AB 1488: County juvenile transition centers.
- Session Year: 2017-2018
- House: Assembly
- Latest Version Date: 2018-06-26
Existing law provides for the supervision of persons discharged from the Division of Juvenile Facilities and from county juvenile facilities by county probation departments and provides funds to the counties for that purpose.
This bill would require every county, after consultation county to convene a working group with stakeholders, to establish at least one discuss and assess what resources are needed for the creation or support of a juvenile transition center in the county that would provide housing and services to youth upon release from juvenile correctional facilities. The bill would require the centers to provide temporary transitional housing and other specified services to participants. The bill would require counties to implement the program only to the extent that funds are available from the state or other sources.
This bill would declare that it is to take effect immediately as an urgency statute.
Existing law provides for the supervision of persons discharged from the Division of Juvenile Facilities and from county juvenile facilities by county probation departments and provides funds to the counties for that purpose.
This bill would require every county, after consultation with stakeholders, to establish at least one juvenile transition center in the county that would provide housing and services to youth upon release from juvenile correctional facilities. The bill would require the centers to provide temporary transitional housing and other specified services to participants. The bill would require counties to implement the program only to the extent that funds are available from the state or other sources.
This bill would declare that it is to take effect immediately as an urgency statute.
Existing law requires the State Department of Public Health to create programs for the monitoring and treatment of various diseases, including cancer and cardiovascular disease.This bill, until January 1, 2024, would require the department to establish a Sickle Cell Disease Center to coordinate care for people with sickle cell disease throughout California and to provide specified training and outreach services for patients with sickle cell disease and health care professionals. The bill would require the center to be located as determined by the department to best serve the population of state residents with sickle cell disease. The bill would specify the responsibilities of the center. The bill would establish the Sickle Cell Disease Center Program Account and specify purposes for which moneys in the account may be used.This bill would declare that it is to take effect immediately as an urgency statute.Existing law requires the State Department of Public Health to create programs for the monitoring and treatment of various diseases, including cancer and cardiovascular disease.
This bill, until January 1, 2024, would require the department to establish up to 4 a Sickle Cell Disease Centers, that are responsible for coordinating care of Center to coordinate care for people with sickle cell disease throughout California and for providing to provide specified training and outreach services for patients with sickle cell disease and health care professionals. The bill would require at least 2 of the centers to be located in southern California, one center to be located in northern California, and one center, if established, the center to be located as determined by the department to best serve the population of state residents with sickle cell disease. The bill would specify the criteria used to establish the centers and the responsibilities of established centers. The bill would appropriate $20,000,000 in fiscal year 201718 and $15,0000,000 in each of the fiscal years 201819 to 202122, inclusive, for the program and would specify the manner in which those moneys are to be allocated. the center. The bill would establish the Sickle Cell Disease Center Program Account and specify purposes for which moneys in the account may be used.
This bill would declare that it is to take effect immediately as an urgency statute.
Existing law requires the State Department of Public Health to create programs for the monitoring and treatment of various diseases, including cancer and cardiovascular disease.
This bill, until January 1, 2024, would require the department to establish up to 4 Sickle Cell Disease Centers, that are responsible for coordinating care of people with sickle cell disease throughout California and for providing specified training and outreach services for patients with sickle cell disease and health care professionals. The bill would require at least 2 of the centers to be located in southern California, one center to be located in northern California, and one center, if established, to be located as determined by the department to best serve the population of state residents with sickle cell disease. The bill would specify the criteria used to establish the centers and the responsibility responsibilities of established centers. The bill would appropriate $20,000,000 in fiscal year 201718 and $15,0000,000 in each of the fiscal years 201819 to 202122, inclusive, for the program and would specify the manner in which those moneys are to be allocated.
This bill would declare that it is to take effect immediately as an urgency statute.
Existing law requires the State Department of Public Health to create programs for the monitoring and treatment of various diseases, including cancer and cardiovascular disease.
This bill bill, until January 1, 2024, would require the department to establish up to 4 Sickle Cell Disease Centers, that are responsible for coordinating care of people with sickle cell disease throughout California. California and for providing specified training and outreach services for patients with sickle cell disease and health care professionals. The bill would require at least 2 of the centers to be located in southern California, one center to be located in central California, and one center to be located in northern California. California, and one center, if established, to be located as determined by the department to best serve the population of state residents with sickle cell disease. The bill would specify the criteria used to establish the centers and the responsibility of established centers. The bill would appropriate $20,000,000 in fiscal year 201718 and $15,0000,000 in each of the fiscal years 201819 to 202122, inclusive, for the program and would specify the manner in which those moneys are to be allocated.
Existing law requires the State Department of Public Health to create programs for the monitoring and treatment of various diseases, including cancer and cardiovascular disease.
This bill would require the department to establish up to 4 Sickle Cell Disease Centers, that are responsible for coordinating care of people with sickle cell disease throughout California. The bill would require at least 2 of the centers to be located in southern California, one center to be located in central California, and one center to be located in northern California.
Existing law requires the Director of Health Care Services to establish and administer a program for the medical care of persons with specified genetic conditions. The program is also required to provide access for these persons to social support services.This bill would make a technical, nonsubstantive change to these provisions.Existing law requires the Director of Health Care Services to establish and administer a program for the medical care of persons with specified genetic conditions. The program is also required to provide access for these persons to social support services.
This bill would make a technical, nonsubstantive change to these provisions.
(a)Each county shall, after consultation shall convene a workgroup with stakeholders, including, but not limited to, community organizations, law enforcement, health officials, and juveniles who have been released from juvenile correctional facilities and their families, establish at least one to discuss and assess the resources that are needed for the creation or support of a juvenile transition center in the county. The transition center shall provide housing and services to youth upon release from juvenile correctional facilities.
(b)County juvenile transition centers shall provide temporary transitional housing to participants. Centers shall also provide participants with services, including, but not limited to, assisting with education, work training, health and mental health services, family and social services, and legal services.
(c)Counties shall work with other county, local, and state programs, as well as nonprofit organizations, to provide services and to coordinate services to the maximum extent possible.
1989.Residential and other services shall be made available to all eligible juveniles, but release, parole, or probation shall not be made conditional upon residing at, or receiving services from, a center.
1990.Counties are only required to implement this chapter to the extent that funds are available from the state or from other sources.
SEC. 2.This act is an urgency statute necessary for the immediate preservation of the public peace, health, or safety within the meaning of Article IV of the California Constitution and shall go into immediate effect. The facts constituting the necessity are:
In order for juveniles in the community to receive the services and support they need at the earliest time after release from the juvenile justice system, in order to reclaim their lives and avoid the cycle of recidivism, it is necessary for this measure to take effect immediately.
(a)Each county shall, after consultation with stakeholders, including, but not limited to, community organizations, law enforcement, health officials, and juveniles who have been released from juvenile correctional facilities and their families, establish at least one juvenile transition center in the county. The transition center shall provide housing and services to youth upon release from juvenile correctional facilities.
(b)County juvenile transition centers shall provide temporary transitional housing to participants. Centers shall also provide participants with services, including, but not limited to, assisting with education, work training, health and mental health services, family and social services, and legal services.
(c)Counties shall work with other county, local, and state programs, as well as nonprofit organizations, to provide services and to coordinate services to the maximum extent possible.
1989.Residential and other services shall be made available to all eligible juveniles, but release, parole, or probation shall not be made conditional upon residing at, or receiving services from, a center.
1990.Counties are only required to implement this chapter to the extent that funds are available from the state or from other sources.
SEC. 2.This act is an urgency statute necessary for the immediate preservation of the public peace, health, or safety within the meaning of Article IV of the California Constitution and shall go into immediate effect. The facts constituting the necessity are:
In order for juveniles in the community to receive the services and support they need at the earliest time after release from the juvenile justice system, in order to reclaim their lives and avoid the cycle of recidivism, it is necessary for this measure to take effect immediately.
All matter omitted in this version of the bill appears in the bill as amended in the Assembly, May 30, 2017. (JR11)The Legislature finds and declares all of the following:
(a)Sickle cell disease (SCD) is an inherited disease of red blood cells that is a major health problem in California and in the United States.
(b)Approximately 100,000 Americans have SCD and approximately 1,000 babies are born with SCD in the United States each year. SCD is also a global problem, with close to 500,000 babies born annually with this disease.
(c)In the United States, SCD is most common in African Americans and in those of Hispanic, Mediterranean, and Middle Eastern ancestry. Among newborns in the United States, SCD occurs in approximately 1 in 300 African Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
(d)More than three million Americans, mostly African Americans, have the sickle cell trait. These Americans are carriers of the sickle cell gene who have inherited the normal hemoglobin gene from one parent and the sickle cell gene from the other parent. Sickle cell trait is not a disease, but when both parents have the sickle cell trait, there is a one in four chance with each pregnancy that their child will be born with SCD.
(e)Although SCD is not highly prevalent in California, the medical, social, and financial burden of the disease on the 7,000 residents living with SCD is great. Children and adults with SCD have high rates of acute illness and hospital utilization, shortened life expectancy, a high risk of sudden death, episodes of extreme, debilitating pain, and challenges with accessing quality health care. As a result, people with SCD may experience poor quality of life. In 2014, there were 6,667 hospital admissions by 1,964 individuals with SCD in California. The average number of admissions was 3.4 per individual, with the length of admission ranging from one day to 213 inpatient days. The cost of hospitalization and emergency room use in 2014 was approximately 350 million dollars.
(f)Children with SCD may have frequent pain episodes, entrapment of blood within the spleen causing enlargement and life-threatening anemia, acute lung complications (acute chest syndrome), priapism, and brain injury. During episodes of severe pain, life-threatening complications can develop rapidly. Spleen enlargement and acute chest syndrome are both life threatening. Children with SCD are also at risk for septicemia (bacterial infection) and brain injury.
(g)One of the most devastating complications for children with SCD is a stroke: either overt, causing paralysis, or silent, causing learning and other occult neurological and developmental problems. Overt stroke occurs in 10 percent of the children with sickle cell anemia prior to their 18th birthday and occurs in infants as young as 18 months of age. Children with SCD at highest risk for stroke are screened, identified, and treated early with monthly blood transfusions for stroke prevention. Students with SCD who have silent strokes may not have any physical signs or symptoms of overt stroke but may have lower educational attainment when compared to children without SCD due to these silent strokes.
(h)Many adults with SCD have acute problems, including frequent pain episodes and acute chest syndrome, that can result in death or prolonged hospitalization. Adults with SCD can also develop chronic problems, including chronic pulmonary disease, pulmonary hypertension, degenerative bone disease of the shoulder and hip joints (bone necrosis), eye disease, and kidney failure. Adults continue to have neuropsychological problems due to strokes suffered as children. Stroke and intracranial hemorrhage in the adult SCD population commonly result in lifelong mental and physical disabilities.
(i)SCD has a significant effect on mortality. In California, the median age of death for individuals with SCD is 42.8 years, with 30 percent of those deaths among individuals under 35 years of age. Causes of death in children and adults include bacterial infection, stroke, and lung, kidney, heart, or liver failure. Bacterial infections and lung injuries are the leading causes of death in children and adults with SCD.
(j)Children and individuals 20 to 30 years of age who have SCD are among the most vulnerable of this population. Hospital admissions and emergency department visits rise dramatically after childhood as patients are transitioned from comprehensive pediatric SCD care into a general medical community that does not have the expertise, adequate resources, or appropriate reimbursement to care for patients with SCD. In 2014, 82 percent of emergency department visits for patients with SCD in California were made to facilities without demonstrated expertise in SCD care.
(k)As a complex disorder with multisystem manifestations, SCD requires specialized comprehensive and continuous lifetime care to achieve the best possible outcome and to reduce complications and cost to the state. Newborn screening, genetic counseling, and education of individuals with SCD and their family members are critical preventative measures that decrease morbidity and mortality, delay or prevent complications, reduce inpatient hospital stays, and decrease overall costs of care.
(l)Currently, one of the most effective treatments to prevent or treat a stroke for a child with SCD is monthly blood transfusion, throughout childhood for many and throughout life for most. This requires the removal of sickle cell blood and replacement with normal blood (exchange transfusion) or the dilution of the sickle cell blood by simple transfusion.
(m)With acute chest syndrome, blood transfusions are usually required and are often the only therapy demonstrated to prevent premature death.
(n)Hydroxyurea is currently the only medicine approved for treatment of SCD. Although over 80 percent of hematology physicians have reported that they know about the recommendations for the use of hydroxyurea, less than half reported that they prescribed hydroxyurea to eligible patients.
(o)The Legislature intends with this act to develop and establish systemic mechanisms to improve the treatment of sickle cell disease in order to prevent complications, improve patient quality of life, and decrease hospitalizations and morbidity for people with this disease in the State of California.
SEC. 2.Part 8 (commencing with Section 106100) is added to Division 103 of the Health and Safety Code, to read:8.Sickle Cell Disease Centers106100.(a)The State Department of Public Health shall establish a Sickle Cell Disease Center pilot program. The pilot program shall do all of the following:
(1)Create a competitive grant program Award grant funding to establish three or four a Sickle Cell Disease Centers, Center, as provided in Section 106101. Grant funding shall be allocated as provided in subdivision (b).
(2)Enable coordination between the established centers center and community providers to improve the care of people who have sickle cell disease and to establish a seamless sickle cell treatment program in the state.
(3)Evaluate the overall program on a biannual basis.(3)Collect data on the outcomes for patients treated by the center.
(b)(1)On or before January 1, 2021, the department shall report to the Legislature and the Governors office on the efficacy of the program and the effect of the program on the treatment of sickle cell disease in the state, including, but not limited to, improved outcomes for patients and reduced costs to public and private insurers due to the pilot program.
(2)The report required pursuant to this subdivision shall be submitted in accordance with Section 9795 of the Government Code.
(c)(1)There is hereby established in the State Treasury the Sickle Cell Disease Centers Center Program Account, which is continuously appropriated to the State Department of Public Health. Account. The moneys in the account shall be used are available, upon appropriation by the Legislature, to fund the grant program established by this part. The department may use the moneys to pay for the actual and reasonable administrative costs relating to the establishment of the grant program and for any actual and reasonable costs required by this part. Subject to an appropriation, moneys may be used for the following purposes:
(2)In each of the fiscal years 201718 to 202122, inclusive, the following allocations shall be made:(A)Each Administration of the established center shall receive one million five hundred thousand dollars ($1,500,000) per fiscal year for participation in the pilot program. center.
(B)One hundred thousand dollars ($100,000) per year shall be used for the The State Sickle Cell Disease Conference, as required by paragraph (11) of subdivision (a) of Section 106102.
(3)The following amounts are allocated to the department in the 2017-18 fiscal year for use at any time prior to January 1, 2023:(A)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, for the acquisition(C)The acquisition of major purchase items for use at the center, including, but not limited to, specialized medical equipment for the treatment of sickle cell disease.
(B)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, to aid in the(D)The transportation of patients to access the centers. center.
(C)Two hundred fifty thousand dollars ($250,000) to defray the(E)The actual travel and attendance costs of the quarterly meetings of the advisory committee required pursuant to Section 106104.
(4)In the 201718 fiscal year, one million dollars ($1,000,000) shall be allocated for the development of the Internet Web-based information center required pursuant to Section 106103. For fiscal years 201819 to 202122, inclusive, five hundred thousand dollars ($500,000) shall be allocated each year for the(F)The development, continued operation operation, and maintenance of the Internet Web-based information center. center required pursuant to Section 106103.
(5)In the 201718 fiscal year, five hundred thousand dollars ($500,000) shall be allocated for the(G)The development of a database to track patients with sickle cell disease, including the location and number of persons with the disease, hospitalization, rehospitalization, and emergency room use by those patients. For fiscal years 201819 to 202122, inclusive, two hundred fifty thousand dollars ($250,000) shall be allocated each year for this purpose.
(6)(2)The remaining funds may also be used by the department, in its discretion, for any or all of the following:
(A)Grants to health care providers or clinics that are not affiliated with an the established center but that provide care to patients with sickle cell disease. If grants are awarded pursuant to this subparagraph, the recipients shall do all of the following:
(i)The provider or clinic shall have an affiliation with one ofthe three centers center for consultation.
(ii)A provider or clinic shall demonstrate the ability to refer patients to pediatric or adult subspecialists for sickle cell care.
(iii)A pediatric provider or clinic shall have the ability to perform transcranial Doppler studies on young children 30 months of age and younger or be able to refer patients for that evaluation.
(iv)A provider or clinic that is treating a patient who does not have a confirmed diagnosis of sickle cell disease shall have the diagnosis confirmed at a central hemoglobinopathy laboratory.
(v)A provider or clinic shall have the ability to refer a patient for red cell transfusion for primary or secondary prevention of stroke to a facility that adheres to the standards of care for sickle cell red cell transfusion by simple or automated red cell exchange.
(vi)A provider or clinic shall demonstrate the ability to evaluate, prescribe, and monitor patients who are prescribed hydroxyurea or other medications used to treat sickle cell disease, in consultation with the affiliated center.
(vii)At least one physician from the provider or clinic shall attend at least one teaching seminar or webinar given by a center every year that funding is received. Attendance at the State Sickle Cell Disease Conference shall fulfill this requirement.
(B)Grants for the establishment and maintenance of a telehealth system or an online consultation service to support patients with sickle cell disease and the health care professionals who treat them.
(C)Hemoglobinopathy testing to confirm diagnosis of sickle cell disease in patients in California and parents of children known to have sickle cell disease.
(d)Any moneys remaining in the Sickle Cell Centers Disease Center Program Account that are unencumbered as of January 1, 2024, shall be returned to the General Fund.
106101.(a)The department shall provide competitive grants to establish three or four a Sickle Cell Disease Centers. Two centers shall be established in southern California, one center shall be established in northern California, and one center, if established, Center. The center shall be established in a location to be determined by the department to best serve the population of state residents with sickle cell disease.
(b)In order to receive a grant under this part, an applicant shall demonstrate all of the following:
(1)That the applicant has at least 150 current patients who have sickle cell disease, including both adult and pediatric patients.
(2)An affiliation with a health care facility, licensed pursuant to Section 1250, that cares for patients with sickle cell disease. The health care facility shall have the capability for tertiary acute inpatient care, automated red cell exchange transfusion, intensive care, and emergency care.
(3)Access to a genetic counselor and trait counselor, each at least 3/5 time, onsite for adult and pediatric patients.
(4)Full-time employment of a pediatric social worker and an adult social worker that patients can access during the workweek.
(5)The facility is accessible to the community via public transportation or other means, including coordinating with community organizations to provide access to the center.
(6)Access to neuropsychological testing for children and adults who have sickle cell disease and access to a psychologist, at least 3/5 of the time, to serve both pediatric and adult patients.
(7)A program for transitioning sickle cell patients from pediatric care to adult care.
(8)A full-time pediatric hematology physician or pediatrician for pediatric patients and a full-time adult hematologist or internist for adult patients.
(9)Full-time nursing support by either a registered nurse or a nurse practitioner with a focus on pediatric hematology-oncology for pediatric patients and adult hematology for adult patients.
(10)The ability to perform transcranial Doppler studies for children under three years of age to screen for stroke risk and to provide appropriate care and services for children who are at risk for stroke.
106102.(a)Each The established center shall do all of the following:
(1)Provide primary care for patients with sickle cell disease. Primary care includes either performing any services required or the ability to refer the patient to a specialist, if needed.
(2)Perform outreach to the community to improve access to care and educate people who have sickle cell disease and sickle cell trait, including health care navigation and patient education. The center shall engage in and support community programs relative to sickle cell disease treatment and education.
(3)Identify people who have sickle cell disease in its catchment area and collaborate with the other centers to support a statewide database of people who have sickle cell disease.
(4)Provide sickle cell disease and trait counseling for children and adults adults, and make these services available to the community.
(5)Provide transfusion services for chronic transfusion therapy at least five days a week, including automated red cell exchange transfusion. Transfusion services shall have the ability to monitor iron in transfused patients, provide iron chelation therapy, and have the capability for red cell genotyping or phenotyping. The center shall have access to a blood center with the ability to provide phenotypically matched red cells for transfusion.
(6)Provide outpatient pain management for persons with sickle cell disease in a day treatment or outpatient facility.
(7)Collaborate with the other centers to establish Establish state guidelines for the best standards of care for people who have sickle cell disease. The standards shall be made available to all health care practitioners and health care facilities in the state.
(8)Provide outreach to, and training of, health care and social service professionals at all levels who provide care and services for people with sickle cell disease.
(9)Provide collaborative support to practitioners who care for adult and pediatric patients who have sickle cell disease through an online consultation system, seminars, and webinars.
(10)Collaborate with the other centers, the department, department and the sickle cell community to develop and maintain the Internet Web-based information center, as specified in Section 106103.
(11)Collaborate with the other centers to coordinate Coordinate and fund the annual State Sickle Cell Disease Conference, hosted at each of the centers in rotation. Conference. The conference shall be open to all health care practitioners and shall provide continuing education units for physicians, nurses, and other health care professionals.
(12)Establish a telehealth system or an online consultation service to serve patients and consult with medical providers at remote sites.
(b)The center shall have an identified medical director who oversees the center and is responsible for teaching and training programs for health care professionals in the center. The medical director shall assess the quality and performance of the center on a biannual basis and the staff on an annual basis and shall formally report the progress to the department.
106103.The department, with the assistance of the established centers, center, shall establish and maintain an Internet Web-based information center that has all of the following capabilities:
(a)Provide information on sickle cell disease and sickle cell trait to the public, including options for diagnosis, treatment, and counseling.
(b)Provide information about the centers, center, including contact information, services, and outreach and education programs for patients and health care professionals.
(c)Provide a portal for health care providers to access information and resources relating to the treatment of adult and pediatric patients with sickle cell disease. The provider portal shall include a way for health care professionals who are not near a the center to communicate with a health care professional in one or more centers on a real-time or similar basis through an online consultation service.
(d)Provide a portal for patients to access information and resources relating to treatment and counseling. The patient portal shall include a way for patients to communicate with a health care or counseling professional in one or more centers on a real-time or similar basis.
106104.(a)The department shall convene an advisory committee consisting of the following:
(1)One individual who has sickle cell disease.
(2)One parent of a child who has sickle cell disease.
(3)One nurse practitioner or registered nurse with a minimum of five years of experience caring for patients with sickle cell disease.
(4)One social worker with a minimum of five years of experience providing client services to people who have sickle cell disease.
(5)One representative from a community outreach program or community-based organization with five years of experience working with the sickle cell community.
(6)One adult-focused hematologist or a pediatric hematologist-oncologist with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(7)One primary care physician with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(8)One individual from the department with experience in developing, implementing, monitoring, and evaluating state medical institutions.
(b)The advisory group shall review the implementation of this part by the department and the established centers center and shall provide recommendations to the department to improve services and supports for the sickle cell patient and health care community.
106105.This part shall remain in effect only until January 1, 2024, and as of that date is repealed.
SEC. 3.(a)For the 201718 fiscal year, the sum of twenty million dollars ($20,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).(b)For each of the 201819 to 202122 fiscal years, inclusive, the sum of fifteen million dollars ($15,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).SEC. 4.SEC. 3.This act is an urgency statute necessary for the immediate preservation of the public peace, health, or safety within the meaning of Article IV of the California Constitution and shall go into immediate effect. The facts constituting the necessity are:
In order to provide critical and potentially life-altering services to individuals living with sickle cell disease, it is necessary that this act take effect immediately.
The Legislature finds and declares all of the following:
(a)Sickle cell disease (SCD) is an inherited disease of red blood cells that is a major health problem in California and in the United States.
(b)Approximately 100,000 Americans have SCD and approximately 1,000 babies are born with SCD in the United States each year. SCD is also a global problem, with close to 500,000 babies born annually with this disease.
(c)In the United States, SCD is most common in African Americans and in those of Hispanic, Mediterranean, and Middle Eastern ancestry. Among newborns in the United States, SCD occurs in approximately 1 in 300 African Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
(d)More than three million Americans, mostly African Americans, have the sickle cell trait. These Americans are carriers of the sickle cell gene who have inherited the normal hemoglobin gene from one parent and the sickle cell gene from the other parent. Sickle cell trait is not a disease, but when both parents have the sickle cell trait, there is a one in four chance with each pregnancy that their child will be born with SCD.
(e)Although SCD is not highly prevalent in California, the medical, social, and financial burden of the disease on the 7,000 residents living with SCD is great. Children and adults with SCD have high rates of acute illness and hospital utilization, shortened life expectancy, a high risk of sudden death, episodes of extreme, debilitating pain, and challenges with accessing quality health care. As a result, people with SCD may experience poor quality of life. In 2014, there were 6,667 hospital admissions by 1,964 individuals with SCD in California. The average number of admissions was 3.4 per individual, with the length of admission ranging from one day to 213 inpatient days. The cost of hospitalization and emergency room use in 2014 was approximately 350 million dollars.
(f)Children with SCD may have frequent pain episodes, entrapment of blood within the spleen causing enlargement and life-threatening anemia, acute lung complications (acute chest syndrome), priapism, and brain injury. During episodes of severe pain, life-threatening complications can develop rapidly. Spleen enlargement and acute chest syndrome are both life threatening. Children with SCD are also at risk for septicemia (bacterial infection) and brain injury.
(g)One of the most devastating complications for children with SCD is a stroke: either overt, causing paralysis, or silent, causing learning and other occult neurological and developmental problems. Overt stroke occurs in 10 percent of the children with sickle cell anemia prior to their 18th birthday and occurs in infants as young as 18 months of age. Children with SCD at highest risk for stroke are screened, identified, and treated early with monthly blood transfusions for stroke prevention. Students with SCD who have silent strokes may not have any physical signs or symptoms of overt stroke but may have lower educational attainment when compared to children without SCD due to these silent strokes.
(h)Many adults with SCD have acute problems, including frequent pain episodes and acute chest syndrome, that can result in death or prolonged hospitalization. Adults with SCD can also develop chronic problems, including chronic pulmonary disease, pulmonary hypertension, degenerative bone disease of the shoulder and hip joints (bone necrosis), eye disease, and kidney failure. Adults continue to have neuropsychological problems due to strokes suffered as children. Stroke and intracranial hemorrhage in the adult SCD population commonly result in lifelong mental and physical disabilities.
(i)SCD has a significant effect on mortality. In California, the median age of death for individuals with SCD is 42.8 years, with 30 percent of those deaths among individuals under 35 years of age. Causes of death in children and adults include bacterial infection, stroke, and lung, kidney, heart, or liver failure. Bacterial infections and lung injuries are the leading causes of death in children and adults with SCD.
(j)Children and individuals 20 to 30 years of age who have SCD are among the most vulnerable of this population. Hospital admissions and emergency department visits rise dramatically after childhood as patients are transitioned from comprehensive pediatric SCD care into the a general medical community that does not have the expertise, adequate resources, or appropriate reimbursement to care for patients with SCD. In 2014, 82 percent of emergency department visits for patients with SCD in California were made to facilities without demonstrated expertise in SCD care.
(k)As a complex disorder with multisystem manifestations, SCD requires specialized comprehensive and continuous lifetime care to achieve the best possible outcome and to reduce complications and cost to the state. Newborn screening, genetic counseling, and education of individuals with SCD and their family members are critical preventative measures that decrease morbidity and mortality, delay or prevent complications, reduce inpatient hospital stays, and decrease overall costs of care.
(l)Currently, one of the most effective treatments to prevent or treat a stroke for a child with SCD is monthly blood transfusion, throughout childhood for many and throughout life for most. This requires the removal of sickle cell blood and replacement with normal blood (exchange transfusion) or the dilution of the sickle cell blood by simple transfusion.
(m)With acute chest syndrome, blood transfusions are usually required and are often the only therapy demonstrated to prevent premature death.
(n)Hydroxyurea is currently the only medicine approved for treatment of SCD. Although over 80 percent of hematology physicians have reported that they know about the recommendations for the use of hydroxyurea, less than half reported that they prescribed hydroxyurea to eligible patients.
(o)The Legislature intends with this act to develop and establish systemic mechanisms to improve the treatment of sickle cell disease in order to prevent complications, improve patient quality of life, and decrease hospitalizations and morbidity for people with this disease in the State of California.
SEC. 2.Part 8 (commencing with Section 106100) is added to Division 103 of the Health and Safety Code, to read:8.Sickle Cell Disease Centers106100.(a)The State Department of Public Health shall establish a Sickle Cell Disease Center pilot program. The pilot program shall do all of the following:
(1)Create a competitive grant program to establish three or four Sickle Cell Disease Centers, as provided in Section 106101. Grant funding shall be allocated as provided in subdivision (b).
(2)Enable coordination between the established centers to improve the care of people who have sickle cell disease and to establish a seamless sickle cell treatment program in the state.
(3)Evaluate the overall program on a biannual basis.
(b)(1)On or before January 1, 2021, the department shall report to the Legislature and the Governors office on the efficacy of the program and the effect of the program on the treatment of sickle cell disease in the state, including, but not limited to, improved outcomes for patients and reduced costs to public and private insurers due to the pilot program.
(2)The report required pursuant to this subdivision shall be submitted in accordance with Section 9795 of the Government Code.
(c)(1)There is hereby established in the State Treasury the Sickle Cell Disease Centers Program Account, which is continuously appropriated to the State Department of Public Health. The moneys in the account shall be used to fund the grant program established by this part. The department may use the moneys to pay for the actual and reasonable administrative costs relating to the establishment of the grant program and for any actual and reasonable costs required by this part.
(2)In each of the fiscal years 201718 to 202122, inclusive, the following allocations shall be made:
(A)Each established center shall receive one million five hundred thousand dollars ($1,500,000) per fiscal year for participation in the pilot program.
(B)One hundred thousand dollars ($100,000) per year shall be used for the State Sickle Cell Disease Conference, as required by paragraph (11) of subdivision (a) of Section 106102.
(3)The following amounts are allocated to the department in the 2017-18 fiscal year for use at any time prior to January 1, 2023:
(A)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, for the acquisition of major purchase items for use at the center, including, but not limited to, specialized medical equipment for the treatment of sickle cell disease.
(B)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, to aid in the transportation of patients to access the centers.
(C)Two hundred fifty thousand dollars ($250,000) to defray the actual travel and attendance costs of the quarterly meetings of the advisory committee required pursuant to Section 106104.
(4)In the 201718 fiscal year, one million dollars ($1,000,000) shall be allocated for the development of the Internet Web-based information center required pursuant to Section 106103. For fiscal years 201819 to 202122, inclusive, five hundred thousand dollars ($500,000) shall be allocated each year for the continued operation and maintenance of the Internet Web-based information center.
(5)In the 201718 fiscal year, five hundred thousand dollars ($500,000) shall be allocated each year for the development of a database to track patients with sickle cell disease, including the location and number of persons with the disease, hospitalization, rehospitalization, and emergency room use by those patients. For fiscal years 201819 to 202122, inclusive, two hundred fifty thousand dollars ($250,000) shall be allocated each year for this purpose.
(6)The remaining funds may be used by the department, in its discretion, for any or all of the following:
(A)Grants to health care providers or clinics that are not affiliated with an established center but that provide care to patients with sickle cell disease. If grants are awarded pursuant to this subparagraph, the recipients shall do all of the following:
(i)The provider or clinic shall have an affiliation with one of the three centers for consultation.
(ii)A provider or clinic shall demonstrate the ability to refer patients to pediatric or adult subspecialists for sickle cell care.
(iii)A pediatric provider or clinic shall have the ability to perform transcranial Doppler studies on young children 30 months of age and younger or be able to refer patients for that evaluation.
(iv)A provider or clinic that is treating a patient who does not have a confirmed diagnosis of sickle cell disease shall have the diagnosis confirmed at a central hemoglobinopathy laboratory.
(v)A provider or clinic shall have the ability to refer a patient for red cell transfusion for primary or secondary prevention of stroke to a facility that adheres to the standards of care for sickle cell red cell transfusion by simple or automated red cell exchange.
(vi)A provider or clinic shall demonstrate the ability to evaluate, prescribe, and monitor patients who are prescribed hydroxyurea or other medications used to treat sickle cell disease, in consultation with the affiliated center.
(vii)At least one physician from the provider or clinic shall attend at least one teaching seminar or webinar given by a center every year that funding is received. Attendance at the State Sickle Cell Disease Conference shall fulfill this requirement.
(B)Grants for the establishment and maintenance of a telehealth system or an online consultation service to support patients with sickle cell disease and the health care professionals who treat them.
(C)Hemoglobinopathy testing to confirm diagnosis of sickle cell disease in patients in California and parents of children known to have sickle cell disease.
(d)Any moneys remaining in the Sickle Cell Centers Program Account that are unencumbered as of January 1, 2024, shall be returned to the General Fund.
106101.(a)The department shall provide competitive grants to establish three or four Sickle Cell Disease Centers. Two centers shall be established in southern California, one center shall be established in northern California, and one center, if established, shall be established in a location to be determined by the department to best serve the population of state residents with sickle cell disease.
(b)In order to receive a grant under this part, an applicant shall demonstrate all of the following:
(1)That the applicant has at least 150 current patients who have sickle cell disease, including both adult and pediatric patients.
(2)An affiliation with a health care facility, licensed pursuant to Section 1250, that cares for patients with sickle cell disease. The health care facility shall have the capability for tertiary acute inpatient care, automated red cell exchange transfusion, intensive care, and emergency care.
(3)Access to a genetic counselor and trait counselor, each at least 3/5 time, onsite for adult and pediatric patients.
(4)Full-time employment of a pediatric social worker and an adult social worker that patients can access during the workweek.
(5)The facility is accessible to the community via public transportation or other means, including coordinating with community organizations to provide access to the center.
(6)Access to neuropsychological testing for children and adults who have sickle cell disease and access to a psychologist, at least 3/5 of the time, to serve both pediatric and adult patients.
(7)A program for transitioning sickle cell patients from pediatric care to adult care.
(8)A full-time pediatric hematology physician or pediatrician for pediatric patients and a full-time adult hematologist or internist for adult patients.
(9)Full-time nursing support by either a registered nurse or a nurse practitioner with a focus on pediatric hematology-oncology for pediatric patients and adult hematology for adult patients.
(10)The ability to perform transcranial Doppler studies for children under three years of age to screen for stroke risk and to provide appropriate care and services for children who are at risk for stroke.
106102.(a)Each established center shall do all of the following:
(1)Provide primary care for patients with sickle cell disease. Primary care includes either performing any services required or the ability to refer the patient to a specialist, if needed.
(2)Perform outreach to the community to improve access to care and educate people who have sickle cell disease and sickle cell trait, including health care navigation and patient education. The center shall engage in and support community programs relative to sickle cell disease treatment and education.
(3)Identify people who have sickle cell disease in its catchment area and collaborate with the other centers to support a statewide database of people who have sickle cell disease.
(4)Provide sickle cell disease and trait counseling for children and adults and make these services available to the community.
(5)Provide transfusion services for chronic transfusion therapy at least five days a week, including automated red cell exchange transfusion. Transfusion services shall have the ability to monitor iron in transfused patients, provide iron chelation therapy, and have the capability for red cell genotyping or phenotyping. The center shall have access to a blood center with the ability to provide phenotypically matched red cells for transfusion.
(6)Provide outpatient pain management for persons with sickle cell disease in a day treatment or outpatient facility.
(7)Collaborate with the other centers to establish state guidelines for the best standards of care for people who have sickle cell disease. The standards shall be made available to all health care practitioners and health care facilities in the state.
(8)Provide outreach to, and training of, health care and social service professionals at all levels who provide care and services for people with sickle cell disease.
(9)Provide collaborative support to practitioners who care for adult and pediatric patients who have sickle cell disease through an online consultation system, seminars, and webinars.
(10)Collaborate with the other centers, the department, and the sickle cell community to develop and maintain the Internet Web-based information center, as specified in Section 106103.
(11)Collaborate with the other centers to coordinate and fund the annual State Sickle Cell Disease Conference, hosted at each of the centers in rotation. The conference shall be open to all health care practitioners and shall provide continuing education units for physicians, nurses, and other health care professionals.
(b)The center shall have an identified medical director who oversees the center and is responsible for teaching and training programs for health care professionals in the center. The medical director shall assess the quality and performance of the center on a biannual basis and the staff on an annual basis and shall formally report the progress to the department.
106103.The department, with the assistance of the established centers, shall establish and maintain an Internet Web-based information center that has all of the following capabilities:
(a)Provide information on sickle cell disease and sickle cell trait to the public, including options for diagnosis, treatment, and counseling.
(b)Provide information about the centers, including contact information, services, and outreach and education programs for patients and health care professionals.
(c)Provide a portal for health care providers to access information and resources relating to the treatment of adult and pediatric patients with sickle cell disease. The provider portal shall include a way for health care professionals who are not near a center to communicate with a health care professional in one or more centers on a real-time or similar basis through an online consultation service.
(d)Provide a portal for patients to access information and resources relating to treatment and counseling. The patient portal shall include a way for patients to communicate with a health care or counseling professional in one or more centers on a real-time or similar basis.
106104.(a)The department shall convene an advisory committee consisting of the following:
(1)One individual who has sickle cell disease.
(2)One parent of a child who has sickle cell disease.
(3)One nurse practitioner or registered nurse with a minimum of five years of experience caring for patients with sickle cell disease.
(4)One social worker with a minimum of five years of experience providing client services to people who have sickle cell disease.
(5)One representative from a community outreach program or community-based organization with five years of experience working with the sickle cell community.
(6)One adult-focused hematologist or a pediatric hematologist-oncologist with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(7)One primary care physician with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(8)One individual from the department with experience in developing, implementing, monitoring, and evaluating state medical institutions.
(b)The advisory group shall review the implementation of this part by the department and the established centers and shall provide recommendations to the department to improve services and supports for the sickle cell patient and health care community.
106105.This part shall remain in effect only until January 1, 2024, and as of that date is repealed.
SEC. 3.(a)For the 201718 fiscal year, the sum of twenty million dollars ($20,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).
(b)For each of the 201819 to 202122 fiscal years, inclusive, the sum of fifteen million dollars ($15,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).
SEC. 4.This act is an urgency statute necessary for the immediate preservation of the public peace, health, or safety within the meaning of Article IV of the California Constitution and shall go into immediate effect. The facts constituting the necessity are:
In order to provide critical and potentially life-altering services to individuals living with sickle cell disease, it is necessary that this act take effect immediately.
The Legislature finds and declares all of the following:
(a)Sickle cell disease (SCD) is an inherited disease of red blood cells that is a major health problem in California and in the United States.
(b)Approximately 100,000 Americans have SCD and approximately 1,000 babies are born with SCD in the United States each year. SCD is also a global problem, with close to 500,000 babies born annually with this disease.
(c)In the United States, SCD is most common in African Americans and in those of Hispanic, Mediterranean, and Middle Eastern ancestry. Among newborns in the United States, SCD occurs in approximately 1 in 300 African Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
(d)More than three million Americans, mostly African Americans, have the sickle cell trait. These Americans are carriers of the sickle cell gene who have inherited the normal hemoglobin gene from one parent and the sickle cell gene from the other parent. Sickle cell trait is not a disease, but when both parents have the sickle cell trait, there is a one in four chance with each pregnancy that their child will be born with SCD.
(e)Although SCD is not highly prevalent in California, the medical, social, and financial burden of the disease on the 7,000 residents living with SCD is great. Children and adults with SCD have high rates of acute illness and hospital utilization, shortened life expectancy, a high risk of sudden death, episodes of extreme, debilitating pain, and challenges with accessing quality health care. As a result, people with SCD may experience poor quality of life. In 2014, there were 6,667 hospital admissions by 1,964 individuals with SCD in California. The average number of admissions was 3.4 per individual, with the length of admission ranging from one day to 213 inpatient days. The cost of hospitalization and emergency room use in 2014 was approximately 350 million dollars.
(f)Children with SCD may have frequent pain episodes, entrapment of blood within the spleen causing enlargement and life-threatening anemia, acute lung complications (acute chest syndrome), priapism, and brain injury. During episodes of severe pain, life-threatening complications can develop rapidly. Spleen enlargement and acute chest syndrome are both life threatening. Children with SCD are also at risk for septicemia (bacterial infection) and brain injury.
(g)One of the most devastating complications for children with SCD is a stroke: either overt, causing paralysis, or silent, causing learning and other occult neurological and developmental problems. Overt stroke occurs in 10 percent of the children with sickle cell anemia prior to their 18th birthday and occurs in infants as young as 18 months of age. Children with SCD at highest risk for stroke are screened, identified, and treated early with monthly blood transfusions for stroke prevention. Students with SCD who have silent strokes may not have any physical signs or symptoms of overt stroke but may have lower educational attainment when compared to children without SCD due to these silent strokes.
(h)Many adults with SCD have acute problems, including frequent pain episodes and acute chest syndrome, that can result in death or prolonged hospitalization. Adults with SCD can also develop chronic problems, including chronic pulmonary disease, pulmonary hypertension, degenerative bone disease of the shoulder and hip joints (bone necrosis), eye disease, and kidney failure. Adults continue to have neuropsychological problems due to strokes suffered as children. Stroke and intracranial hemorrhage in the adult SCD population commonly result in lifelong mental and physical disabilities.
(i)SCD has a significant effect on mortality. In California, the median age of death for individuals with SCD is 42.8 years, with 30 percent of those deaths among individuals under 35 years of age. Causes of death in children and adults include bacterial infection, stroke, and lung, kidney, heart, or liver failure. Bacterial infections and lung injuries are the leading causes of death in children and adults with SCD.
(j)Children and individuals 20 to 30 years of age who have SCD are among the most vulnerable of this population. Hospital admissions and emergency department visits rise dramatically after childhood as patients are transitioned from comprehensive pediatric SCD care into the general medical community that does not have the expertise, adequate resources, or appropriate reimbursement to care for patients with SCD. In 2014, 82 percent of emergency department visits for patients with SCD in California were made to facilities without demonstrated expertise in SCD care.
(k)As a complex disorder with multisystem manifestations, SCD requires specialized comprehensive and continuous lifetime care to achieve the best possible outcome and to reduce complications and cost to the state. Newborn screening, genetic counseling, and education of individuals with SCD and their family members are critical preventative measures that decrease morbidity and mortality, delay or prevent complications, reduce inpatient hospital stays, and decrease overall costs of care.
(l)Currently, one of the most effective treatments to prevent or treat a stroke for a child with SCD is monthly blood transfusion, throughout childhood for many and throughout life for most. This requires the removal of sickle cell blood and replacement with normal blood (exchange transfusion) or the dilution of the sickle cell blood by simple transfusion.
(m)With acute chest syndrome, blood transfusions are usually required and are often the only therapy demonstrated to prevent premature death.
(n)Hydroxyurea is currently the only medicine approved for treatment of SCD. Although over 80 percent of hematology physicians have reported that they know about the recommendations for the use of hydroxyurea, less than half reported that they prescribed hydroxyurea to eligible patients.
(o)The Legislature intends with this act to develop and establish systemic mechanisms to improve the treatment of sickle cell disease in order to prevent complications, improve patient quality of life, and decrease hospitalizations and morbidity for people with this disease in the State of California.
SECTION 1.SEC. 2.Part 8 (commencing with Section 106100) is added to Division 103 of the Health and Safety Code, to read:8.Sickle Cell Disease Centers106100.The department shall establish up to four Sickle Cell Disease Centers, that are responsible for coordinating care of people with sickle cell disease throughout California. At least two centers shall be located in southern California, one center shall be located in central California, and one center shall be located in northern California. The centers shall establish best practices for treatment of people with sickle cell disease and shall advise other health facilities on those practices and other issues facing patients with sickle cell disease.106100.(a)The State Department of Public Health shall establish a Sickle Cell Disease Center pilot program. The pilot program shall do all of the following:
(1)Create a competitive grant program to establish three or four Sickle Cell Disease Centers, as provided in Section 106101. Grant funding shall be allocated as provided in subdivision (b).
(2)Enable coordination between the established centers to improve the care of people who have sickle cell disease and to establish a seamless sickle cell treatment program in the state.
(3)Evaluate the overall program on a biannual basis.
(b)(1)On or before January 1, 2021, the department shall report to the Legislature and the Governors office on the efficacy of the program and the effect of the program on the treatment of sickle cell disease in the state, including, but not limited to, improved outcomes for patients and reduced costs to public and private insurers due to the pilot program.
(2)The report required pursuant to this subdivision shall be submitted in accordance with Section 9795 of the Government Code.
(c)(1)There is hereby established in the State Treasury the Sickle Cell Disease Centers Program Account, which is continuously appropriated to the State Department of Public Health. The moneys in the account shall be used to fund the grant program established by this part. The department may use the moneys to pay for the actual and reasonable administrative costs relating to the establishment of the grant program and for any actual and reasonable costs required by this part.
(2)In each of the fiscal years 201718 to 202122, inclusive, the following allocations shall be made:
(A)Each established center shall receive one million five hundred thousand dollars ($1,500,000) per fiscal year for participation in the pilot program.
(B)One hundred thousand dollars ($100,000) per year shall be used for the State Sickle Cell Disease Conference, as required by paragraph (11) of subdivision (a) of Section 106102.
(3)The following amounts are allocated to the department in the 2017-18 fiscal year for use at any time prior to January 1, 2023:
(A)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, for the acquisition of major purchase items for use at the center, including, but not limited to, specialized medical equipment for the treatment of sickle cell disease.
(B)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, to aid in the transportation of patients to access the centers.
(C)Two hundred fifty thousand dollars ($250,000) to defray the actual travel and attendance costs of the quarterly meetings of the advisory committee required pursuant to Section 106104.
(4)In the 201718 fiscal year, one million dollars ($1,000,000) shall be allocated for the development of the Internet Web-based information center required pursuant to Section 106103. For fiscal years 201819 to 202122, inclusive, five hundred thousand dollars ($500,000) shall be allocated each year for the continued operation and maintenance of the Internet Web-based information center.
(5)In the 201718 fiscal year, five hundred thousand dollars ($500,000) shall be allocated each year for the development of a database to track patients with sickle cell disease, including the location and number of persons with the disease, hospitalization, rehospitalization, and emergency room use by those patients. For fiscal years 201819 to 202122, inclusive, two hundred fifty thousand dollars ($250,000) shall be allocated each year for this purpose.
(6)The remaining funds may be used by the department, in its discretion, for any or all of the following:
(A)Grants to health care providers or clinics that are not affiliated with an established center but that provide care to patients with sickle cell disease. If grants are awarded pursuant to this subparagraph, the recipients shall do all of the following:
(i)The provider or clinic shall have an affiliation with one of the three centers for consultation.
(ii)A provider or clinic shall demonstrate the ability to refer patients to pediatric or adult subspecialists for sickle cell care.
(iii)A pediatric provider or clinic shall have the ability to perform transcranial Doppler studies on young children 30 months of age and younger or be able to refer patients for that evaluation.
(iv)A provider or clinic that is treating a patient who does not have a confirmed diagnosis of sickle cell disease shall have the diagnosis confirmed at a central hemoglobinopathy laboratory.
(v)A provider or clinic shall have the ability to refer a patient for red cell transfusion for primary or secondary prevention of stroke to a facility that adheres to the standards of care for sickle cell red cell transfusion by simple or automated red cell exchange.
(vi)A provider or clinic shall demonstrate the ability to evaluate, prescribe, and monitor patients who are prescribed hydroxyurea or other medications used to treat sickle cell disease, in consultation with the affiliated center.
(vii)At least one physician from the provider or clinic shall attend at least one teaching seminar or webinar given by a center every year that funding is received. Attendance at the State Sickle Cell Disease Conference shall fulfill this requirement.
(B)Grants for the establishment and maintenance of a telehealth system or an online consultation service to support patients with sickle cell disease and the health care professionals who treat them.
(C)Hemoglobinopathy testing to confirm diagnosis of sickle cell disease in patients in California and parents of children known to have sickle cell disease.
(d)Any moneys remaining in the Sickle Cell Centers Program Account that are unencumbered as of January 1, 2024, shall be returned to the General Fund.
106101.(a)The department shall provide competitive grants to establish three or four Sickle Cell Disease Centers. Two centers shall be established in southern California, one center shall be established in northern California, and one center, if established, shall be established in a location to be determined by the department to best serve the population of state residents with sickle cell disease.
(b)In order to receive a grant under this part, an applicant shall demonstrate all of the following:
(1)That the applicant has at least 150 current patients who have sickle cell disease, including both adult and pediatric patients.
(2)An affiliation with a health care facility, licensed pursuant to Section 1250, that cares for patients with sickle cell disease. The health care facility shall have the capability for tertiary acute inpatient care, automated red cell exchange transfusion, intensive care, and emergency care.
(3)Access to a genetic counselor and trait counselor, each at least 3/5 time, onsite for adult and pediatric patients.
(4)Full-time employment of a pediatric social worker and an adult social worker that patients can access during the workweek.
(5)The facility is accessible to the community via public transportation or other means, including coordinating with community organizations to provide access to the center.
(6)Access to neuropsychological testing for children and adults who have sickle cell disease and access to a psychologist, at least 3/5 of the time, to serve both pediatric and adult patients.
(7)A program for transitioning sickle cell patients from pediatric care to adult care.
(8)A full-time pediatric hematology physician or pediatrician for pediatric patients and a full-time adult hematologist or internist for adult patients.
(9)Full-time nursing support by either a registered nurse or a nurse practitioner with a focus on pediatric hematology-oncology for pediatric patients and adult hematology for adult patients.
(10)The ability to perform transcranial Doppler studies for children under three years of age to screen for stroke risk and to provide appropriate care and services for children who are at risk for stroke.
106102.(a)Each established center shall do all of the following:
(1)Provide primary care for patients with sickle cell disease. Primary care includes either performing any services required or the ability to refer the patient to a specialist, if needed.
(2)Perform outreach to the community to improve access to care and educate people who have sickle cell disease and sickle cell trait, including health care navigation and patient education. The center shall engage in and support community programs relative to sickle cell disease treatment and education.
(3)Identify people who have sickle cell disease in its catchment area and collaborate with the other centers to support a statewide database of people who have sickle cell disease.
(4)Provide sickle cell disease and trait counseling for children and adults and make these services available to the community.
(5)Provide transfusion services for chronic transfusion therapy at least five days a week, including automated red cell exchange transfusion. Transfusion services shall have the ability to monitor iron in transfused patients, provide iron chelation therapy, and have the capability for red cell genotyping or phenotyping. The center shall have access to a blood center with the ability to provide phenotypically matched red cells for transfusion.
(6)Provide outpatient pain management for persons with sickle cell disease in a day treatment or outpatient facility.
(7)Collaborate with the other centers to establish state guidelines for the best standards of care for people who have sickle cell disease. The standards shall be made available to all health care practitioners and health care facilities in the state.
(8)Provide outreach to, and training of, health care and social service professionals at all levels who provide care and services for people with sickle cell disease.
(9)Provide collaborative support to practitioners who care for adult and pediatric patients who have sickle cell disease through an online consultation system, seminars, and webinars.
(10)Collaborate with the other centers, the department, and the sickle cell community to develop and maintain the Internet Web-based information center, as specified in Section 106103.
(11)Collaborate with the other centers to coordinate and fund the annual State Sickle Cell Disease Conference, hosted at each of the centers in rotation. The conference shall be open to all health care practitioners and shall provide continuing education units for physicians, nurses, and other health care professionals.
(b)The center shall have an identified medical director who oversees the center and is responsible for teaching and training programs for health care professionals in the center. The medical director shall assess the quality and performance of the center on a biannual basis and the staff on an annual basis and shall formally report the progress to the department.
106103.The department, with the assistance of the established centers, shall establish and maintain an Internet Web-based information center that has all of the following capabilities:
(a)Provide information on sickle cell disease and sickle cell trait to the public, including options for diagnosis, treatment, and counseling.
(b)Provide information about the centers, including contact information, services, and outreach and education programs for patients and health care professionals.
(c)Provide a portal for health care providers to access information and resources relating to the treatment of adult and pediatric patients with sickle cell disease. The provider portal shall include a way for health care professionals who are not near a center to communicate with a health care professional in one or more centers on a real-time or similar basis through an online consultation service.
(d)Provide a portal for patients to access information and resources relating to treatment and counseling. The patient portal shall include a way for patients to communicate with a health care or counseling professional in one or more centers on a real-time or similar basis.
106104.(a)The department shall convene an advisory committee consisting of the following:
(1)One individual who has sickle cell disease.
(2)One parent of a child who has sickle cell disease.
(3)One nurse practitioner or registered nurse with a minimum of five years of experience caring for patients with sickle cell disease.
(4)One social worker with a minimum of five years of experience providing client services to people who have sickle cell disease.
(5)One representative from a community outreach program or community-based organization with five years of experience working with the sickle cell community.
(6)One adult-focused hematologist or a pediatric hematologist-oncologist with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(7)One primary care physician with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(8)One individual from the department with experience in developing, implementing, monitoring, and evaluating state medical institutions.
(b)The advisory group shall review the implementation of this part by the department and the established centers and shall provide recommendations to the department to improve services and supports for the sickle cell patient and health care community.
106105.This part shall remain in effect only until January 1, 2024, and as of that date is repealed.
SEC. 3.(a)For the 201718 fiscal year, the sum of twenty million dollars ($20,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).
(b)For each of the 201819 to 202122 fiscal years, inclusive, the sum of fifteen million dollars ($15,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).
The department shall establish up to four Sickle Cell Disease Centers, that are responsible for coordinating care of people with sickle cell disease throughout California. At least two centers shall be located in southern California, one center shall be located in central California, and one center shall be located in northern California. The centers shall establish best practices for treatment of people with sickle cell disease and shall advise other health facilities on those practices and other issues facing patients with sickle cell disease.
SECTION 1.Section 125130 of the Health and Safety Code is amended to read:125130.(a)The Director of Health Care Services shall establish and administer a program for the medical care of persons with genetically handicapping conditions, including cystic fibrosis, hemophilia, sickle cell disease, Huntingtons disease, Friedreichs Ataxia, Josephs disease, Von Hippel-Landau syndrome, and the following hereditary metabolic disorders: phenylketonuria, homocystinuria, branched chain amino acidurias, disorders of propionate and methylmalonate metabolism, urea cycle disorders, hereditary orotic aciduria, Wilsons Disease, galactosemia, disorders of lactate and pyruvate metabolism, tyrosinemia, hyperornithinemia, and other genetic organic acidemias that require specialized treatment or service available from only a limited number of program-approved sources.(b)The program shall also provide access to social support services, that may help ameliorate the physical, psychological, and economic problems attendant to genetically handicapping conditions, in order that a person with one of these conditions may function at an optimal level commensurate with the degree of impairment.(c)The medical and social support services may be obtained through physicians and surgeons Genetically Handicapped Persons Program specialized centers, and other providers that qualify pursuant to the regulations of the department to provide the services. Medical care, as used in this section, is limited to noncustodial medical and support services.(d)The director shall adopt regulations that are necessary for the implementation of this article.(a)The Director of Health Care Services shall establish and administer a program for the medical care of persons with genetically handicapping conditions, including cystic fibrosis, hemophilia, sickle cell disease, Huntingtons disease, Friedreichs Ataxia, Josephs disease, Von Hippel-Landau syndrome, and the following hereditary metabolic disorders: phenylketonuria, homocystinuria, branched chain amino acidurias, disorders of propionate and methylmalonate metabolism, urea cycle disorders, hereditary orotic aciduria, Wilsons Disease, galactosemia, disorders of lactate and pyruvate metabolism, tyrosinemia, hyperornithinemia, and other genetic organic acidemias that require specialized treatment or service available from only a limited number of program-approved sources.
(b)The program shall also provide access to social support services, that may help ameliorate the physical, psychological, and economic problems attendant to genetically handicapping conditions, in order that the genetically handicapped a person with one of these conditions may function at an optimal level commensurate with the degree of impairment.
(c)The medical and social support services may be obtained through physicians and surgeons Genetically Handicapped Persons Program specialized centers, and other providers that qualify pursuant to the regulations of the department to provide the services. Medical care, as used in this section, is limited to noncustodial medical and support services.
(d)The director shall adopt regulations that are necessary for the implementation of this article.
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Date
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Status
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|---|---|
| Aug 16, 2018 | In committee: Referred to APPR. suspense file. |
| Aug 14, 2018 | From committee: Do pass and re-refer to Com. on APPR. (Ayes 5. Noes 2.) (August 14). Re-referred to Com. on APPR. |
| Jul 3, 2018 | Re-referred to Com. on PUB. S. |
| Jun 26, 2018 | From committee chair, with author's amendments: Amend, and re-refer to committee. Read second time, amended, and re-referred to Com. on RLS. |
| Aug 29, 2017 | Withdrawn from committee. |
| Aug 28, 2017 | From committee chair, with author's amendments: Amend, and re-refer to committee. Read second time, amended, and re-referred to Com. on HEALTH. |
| Jul 17, 2017 | In committee: Set, second hearing. Hearing canceled at the request of author. |
| Jun 29, 2017 | In committee: Set, first hearing. Hearing canceled at the request of author. |
| Jun 14, 2017 | Referred to Com. on HEALTH. |
| Jun 1, 2017 | In Senate. Read first time. To Com. on RLS. for assignment. |
| May 31, 2017 | Read third time. Urgency clause adopted. Passed. Ordered to the Senate. (Ayes 67. Noes 0. Page 1973.). |
| May 30, 2017 | Read second time. Ordered to third reading. |
| May 26, 2017 | From committee: Amend, and do pass as amended. (Ayes 12. Noes 5.) (May 26). |
| May 10, 2017 | In committee: Set, first hearing. Referred to APPR. suspense file. |
| May 3, 2017 | Re-referred to Com. on APPR. |
| May 2, 2017 | Read second time and amended. |
| May 1, 2017 | From committee: Amend, and do pass as amended and re-refer to Com. on APPR. (Ayes 13. Noes 2.) (April 25). |
| Apr 18, 2017 | Re-referred to Com. on HEALTH. |
| Apr 17, 2017 | From committee chair, with author's amendments: Amend, and re-refer to Com. on HEALTH. Read second time and amended. |
| Mar 29, 2017 | Re-referred to Com. on HEALTH. |
| Mar 28, 2017 | From committee chair, with author's amendments: Amend, and re-refer to Com. on HEALTH. Read second time and amended. |
| Mar 27, 2017 | Referred to Com. on HEALTH. |
| Feb 19, 2017 | From printer. May be heard in committee March 21. |
| Feb 17, 2017 | Read first time. To print. |
|
Date
|
Description
|
Location
|
Votes
|
|
|---|---|---|---|---|
| Aug 16, 2018 | Placed on suspense file | Senate Standing Committee on Appropriations |
Passed |
|
| Aug 14, 2018 | Do pass, but first be re-referred to the Committee on [Appropriations] | Senate Standing Committee on Public Safety |
Passed |
|
| May 31, 2017 | AB 1488 THURMOND Third Reading Urgency | Assembly Floor |
Passed |
|
| May 26, 2017 | Do pass as amended. | Assembly Standing Committee on Appropriations |
Passed |
|
| Apr 25, 2017 | Do pass as amended and be re-referred to the Committee on [Appropriations] | Assembly Standing Committee on Health |
Passed |
This list shows positions taken on this bill by organizations on the date displayed, which is linked to the original source.
Positions by individuals are not included.
|
Organization
|
Position
|
Date
|
|---|---|---|
| California Legislative Black Caucus | ** Support | Apr 21, 2017 |
| Chief Probation Officers Of California | * Against | Aug 14, 2018 |
| Keith Quirolo, M.D. | ** Support | Apr 21, 2017 |
| wendy bloom, staff rn, benioff children's hospital oakland | ** Support | Apr 21, 2017 |
| Wendy Bloom, Staff RN, Benioff Childrens Hospital Oakland | ** Support | Apr 21, 2017 |
SENATE COMMITTEE ON APPROPRIATIONS
Senator Anthony Portantino, Chair
2017 - 2018 Regular Session
AB 1488 (Thurmond) - County juvenile transition centers.
Version: June 26, 2018 | Policy Vote: PUB. S. 5 - 2 |
Urgency: Yes | Mandate: No |
Hearing Date: August 16, 2018 | Consultant: Shaun Naidu |
This bill meets the criteria for referral to the Suspense File.
Bill Summary:
AB 1488, an urgency measure, would require each county, upon available funds, to convene a working group, as specified, to discuss and assess what resources are needed for the creation or support of a juvenile transition center and to provide temporary transitional housing, as specified.
Fiscal Impact:
Unknown, potentially-major cost pressure to the General Fund to appropriate monies to counties for the purpose of this measure. If it would cost, for example, counties $25,000 annually to provide transitional housing to one youth who is released from a correctional facility, and each county provided this service, on average, to ten youth, the aggregate costs would be $14.5 million. This cost would be separate from the likely lower costs associated with convening working groups.
This measure does not specify a funding source for providing transitional housing or to pay for costs associated with convening working groups, except that counties are required to implement the provisions of the bill only to the extent that funds are available from the state or other sources. Consequently, this bill would impose cost pressures on the General Fund to provide counties with the moneys to implement AB 1488, particularly if other sources are unavailable. (General Fund)
Background:
According to the analysis of this bill by the Senate Committee on Public Safety:
Juvenile reentry is a term commonly used to describe the reintegrative services provided before and after the release of youths in out-of-home placements, such as [the Division of Juvenile Justice] and juvenile hall, to facilitate their return to their home and community. Research on the area of juvenile reentry emphasizes the importance of a smooth transition from an institutional to community setting. (https://www.ojjdp.gov/mpg/litreviews/Aftercare.pdf.) Several entities may be involved in juvenile reentry, including probation, mental and behavioral health service providers, the juvenile’s school, and the juvenile’s family members, as well as other community-based service providers. The Office of Juvenile Justice and Delinquency Prevention’s literature review on juvenile reentry notes four areas which can significantly impact reentry and which should be considered in reentry planning: mental health and substance use treatment, family engagement, targeted educational and employment programs, and housing. (Id. at p. 3.)
The federal Second Chance Act of 2007 provides grants to government agencies and non-profit organizations with the goal of facilitating reintegration of adult and juvenile offenders into the community. Over 840 grants have been awarded since 2009, and the U.S. Department of Justice estimates that over 164,000 have been served by programs funded by the Second Chance Act. (https://csgjusticecenter.org/wp-content/uploads/2018/07/July-2018_SCA_factsheet.pdf.) Grants have been used to provide employment services, substance abuse treatment, housing, and mentoring, among other things.
Several agencies and organizations in California have received Second Chance Act grants. For example, the Juvenile Collaborative Reentry Unit (JCRU) was established in 2009 as a Second Chance Act National Demonstration Project Site and aimed at addressing the historically high recidivism rate of youth exiting out-of-home placements in San Francisco, (http://www.cjcj.org/Direct-services/Juvenile-Collaborative-Reentry-Unit.html.) The program provides comprehensive reentry case planning and reentry services. Due to its success in reducing recidivism among program participants, JCRU was formalized and made permanent in 2012. Now known as the Juvenile Reentry Court, the Reentry Court team is comprised of the Superior Court, Juvenile Probation Department, Office of the Public Defender, Private Bar Panel, Office of the District Attorney, and the Center on Juvenile and Criminal Justice. (https://www.sfsuperiorcourt.org/sites/default/files/images/Juvenile%20Reentry%20Court%20fact%20sheet%20MARCH%202014%20FINALFINAL.pdf?1529020800035.) Each entity also works closely with youths and their families.
Proposed Law:
This bill would require every county to convene a working group with stakeholders, to discuss and assess what resources are needed for the creation or support of a juvenile transition center in the county that would provide housing and services to youth upon release from juvenile correctional facilities.
AB 1488 also would require the centers to provide temporary transitional housing and other specified services to participants. The services would include assistance with education, work training, health and mental health services, family and social services, and legal services. Additionally, counties would be required to work with other county, local, and state programs and with nonprofit organizations to provide and coordinate services to the maximum extent possible. The counties would be required to implement the program only to the extent that funds are available from the state or other sources.
Staff Comments:
It appears that counties currently have the ability to establish a juvenile transition center and to provide transitional housing to youth who are released from custodial detention, if they so choose. As noted above, several entities in the state have received Second Chance Act grants to provide transitional services to youth reentering the community without a state legislative enactment.
-- END --
SENATE COMMITTEE ON PUBLIC SAFETY
Senator Nancy Skinner, Chair
2017 - 2018 Regular
Bill No: AB 1488 Hearing Date: August 14, 2018
Author: | Thurmond | ||
Version: | June 26, 2018 | ||
Urgency: | Yes | Fiscal: | Yes |
Consultant: | SJ | ||
Subject: County Juvenile Transition Centers
HISTORY
Source: Author
Prior Legislation: None
Support: Unknown
Opposition: None known
Assembly Floor Vote: Not relevant
PURPOSE
The purpose of this bill is to require every county, contingent upon funding, to convene a working group with stakeholders to discuss and assess what resources are needed for the creation or support of a juvenile transition center in the county that would provide housing and services to youth upon release from juvenile correctional facilities, and to provide temporary transitional housing and other specified services at the transitional center.
Existing law provides that any person who is under 18 years of age when he or she violates any law of this state or of the United States or any ordinance of any city or county of this state defining crime other than an ordinance establishing a curfew based solely on age, is within the jurisdiction of the juvenile court, which may adjudge such person to be a ward of the court, except as provided in Section 707. (Welf. & Inst. Code, § 602.)
Existing law establishes the Department of Corrections and Rehabilitation, Division of Juvenile Facilities (DJJ). (Welf. & Inst. Code, § 1000.)
Existing law requires that the board of supervisors in every county provide and maintain, at the expense of the county, in a location approved by the judge of the juvenile court or in counties having more than one judge of the juvenile court, by the presiding judge of the juvenile court, a suitable house or place for the detention of wards and dependent children of the juvenile court and of persons alleged to come within the jurisdiction of the juvenile court. Provides that such house or place be known as the “juvenile hall” of the county. (Welf. & Inst. Code, § 850.)
Existing law generally prohibits the juvenile hall from being in, or connected with, any jail or prison, and provides that it not be deemed to be, nor be treated as, a penal institution. Provides that juvenile hall be a safe and supportive homelike environment. (Welf. & Inst. Code, § 851.)
Existing law requires that the juvenile hall be under the management and control of the probation officer. (Welf. & Inst. Code, § 852.)
Existing law provides that juvenile ranches or camps may be established in order to provide appropriate facilities for the housing of wards of the juvenile court in the counties of their residence or in adjacent counties so that those wards may be kept under direct supervision of the court, and in order to more advantageously apply the salutary effect of a safe and supportive home and family environment upon them, and also in order to secure a better classification and segregation of those wards according to their capacities, interests, and responsiveness to control and responsibility, and to give better opportunity for reform and encouragement of self-discipline in those wards. (Welf. & Inst. Code, § 880.)
Existing law provides that the county of commitment shall supervise the reentry of any ward still subject to the court’s jurisdiction and discharged from the jurisdiction of DJJ. (Welf. & Inst. Code, § 1766, subd. (b)(1).)
This bill requires each county to convene a workgroup with stakeholders, including, but not limited to, community organizations, law enforcement, health officials, and juveniles who have been released from juvenile correctional facilities and their families, to discuss and assess the resources that are needed for the creation or support of a juvenile transition center in the county.
This bill requires the transition center to provide housing and services to youth upon release from juvenile correctional facilities.
This bill requires county juvenile transition centers to provide temporary transitional housing to participants, and to also provide participants with services, including, but not limited to, assisting with education, work training, health and mental health services, family and social services, and legal services.
This bill requires counties to work with other county, local, and state programs, as well as nonprofit organizations, to provide services and to coordinate services to the maximum extent possible.
This bill requires that residential and other services be made available to all eligible juveniles, but release, parole, or probation shall not be made conditional upon residing at, or receiving services from, a center.
This bill provides that counties are only required to implement this chapter to the extent that funds are available from the state or from other sources.
This bill includes an urgency clause.
COMMENTS
- Need for This Bill
According to the author:
Since 1980, California has built 22 new state prisons and just 1 new university. Furthermore, California spends $10,291 per K-12 student and a staggering $62,300 per prison inmate. This begs the question, what are we doing to invest in education, rather than incarceration?
According to a report by the state Division of Juvenile Facilities (DJF), 70% of youth paroled from its institutions were re-arrested within 2 years, many for serious crimes. DJF also documented extremely high rates of mental health disorders (approximately 70%) and substance abuse histories (exceeding 80%) for its release populations.
This bill is necessary in order for juveniles in the community to receive services related to education, work training, health and mental health services, family and social services and legal services. Most importantly the services provided will help reduce recidivism. By allowing each county to convene a workgroup with stakeholders, this bill takes a localized approach so that counties are able to assess the resources that they have for the creation or support of a juvenile transition center and discuss best practices.
- Juvenile Reentry
Juvenile reentry is a term commonly used to describe the reintegrative services provided before and after the release of youths in out-of-home placements, such as DJJ and juvenile hall, to facilitate their return to their home and community. Research on the area of juvenile reentry emphasizes the importance of a smooth transition from an institutional to community setting. (https://www.ojjdp.gov/mpg/litreviews/Aftercare.pdf.) Several entities may be involved in juvenile reentry, including probation, mental and behavioral health service providers, the juvenile’s school, and the juvenile’s family members, as well as other community-based service providers. The Office of Juvenile Justice and Delinquency Prevention’s literature review on juvenile reentry notes four areas which can significantly impact reentry and which should be considered in reentry planning: mental health and substance use treatment, family engagement, targeted educational and employment programs, and housing. (Id. at p. 3.)
The federal Second Chance Act of 2007 provides grants to government agencies and non-profit organizations with the goal of facilitating reintegration of adult and juvenile offenders into the community. Over 840 grants have been awarded since 2009, and the U.S. Department of Justice estimates that over 164,000 have been served by programs funded by the Second Chance Act. (https://csgjusticecenter.org/wp-content/uploads/2018/07/July-2018_SCA_factsheet.pdf.) Grants have been used to provide employment services, substance abuse treatment, housing, and mentoring, among other things.
Several agencies and organizations in California have received Second Chance Act grants. For example, the Juvenile Collaborative Reentry Unit (JCRU) was established in 2009 as a Second Chance Act National Demonstration Project Site and aimed at addressing the historically high recidivism rate of youth exiting out-of-home placements in San Francisco, (http://www.cjcj.org/Direct-services/Juvenile-Collaborative-Reentry-Unit.html.) The program provides comprehensive reentry case planning and reentry services. Due to its success in reducing recidivism among program participants, JCRU was formalized and made permanent in 2012. Now known as the Juvenile Reentry Court, the Reentry Court team is comprised of the Superior Court, Juvenile Probation Department, Office of the Public Defender, Private Bar Panel, Office of the District Attorney, and the Center on Juvenile and Criminal Justice. (https://www.sfsuperiorcourt.org/sites/default/files/images/Juvenile%20Reentry%20Court%20fact%20sheet%20MARCH%202014%20FINALFINAL.pdf?1529020800035.) Each entity also works closely with youths and their families.
This bill seeks to build upon existing collaborative models for juvenile reentry such as the one discussed above by mandating that each county convene a workgroup with appropriate stakeholders to discuss and assess the resources that are needed for the creation or support of a juvenile transition center within the county. This bill specifies that a transition center must provide temporary transitional housing and various services, including assisting with education, work training, health and mental health services, family and social services, and legal services. However, implementation of the requirements in this bill is only required to the extent that funding is available from the state or from other sources.
-- END --
ASSEMBLY THIRD READING
ATR Bill Id:AB 1488
Author:(Thurmond)
As Amended Ver:
2/3 vote. Urgency
Committee | Votes | Ayes | Noes |
Health | 13-2 | Wood, Maienschein, Bonta, Burke, Limón, McCarty, Nazarian, Quirk-Silva, Ridley-Thomas, Rodriguez, Santiago, Chiu, Waldron | Gallagher, Patterson |
Appropriations | 12-5 | Gonzalez Fletcher, Bloom, Bocanegra, Bonta, Calderon, McCarty, Quirk, Friedman, Eduardo Garcia, Gray, Muratsuchi, Reyes | Bigelow, Brough, Fong, Gallagher, Obernolte |
SUMMARY: Requires the Department of Public Health (DPH) to establish a Sickle Cell Disease Center (center) that is responsible for coordinating care of people with sickle cell disease and for providing specified training and outreach services for patients and health care professionals. Specifically, this bill:
- Requires DPH to establish a Sickle Cell Disease Center pilot program, which does all of the following:
- Awards, under a competitive grant, funding for a center. Specifies qualifications for an applicant to receive a grant;
- Enables coordination between the center and community providers to improve the care of people who have sickle cell disease and to establish a seamless sickle cell treatment program in the state; and,
- Collects data on outcomes for patients treated by the center.
- Requires the center to be established in a location to be determined by DPH to best serve the population of state residents with sickle cell disease.
- Requires the center to provide various services and collaborations, including, but not limited to, the following:
- Primary care for patients with sickle cell disease;
- Outreach to the community;
- Support a statewide database of people with sickle cell disease;
- Sickle cell disease and trait counseling
- Transfusion services, as specified: and,
- A telehealth system or an online consultation service to serve patients and consult with medical providers at remote sites.
- Requires DPH, with the assistance of the centers, to establish and maintain an Internet Web-based information center with specified capabilities.
- Requires DPH to convene an eight member advisory committee that includes one individual with sickle cell disease, one parent of a child with the disease, and six other specified individuals.
- Establishes in the State Treasury the Sickle Cell Disease Center Program Account. States that money in the account shall be available on appropriation of the Legislature. Specifies how money in the account may be used.
- Requires DPH to report no later than January 1, 2021 to the Legislature and the Governor on the efficacy of the program.
- Sunsets the provisions of this bill on January 1, 2024.
- Includes an urgency clause.
FISCAL EFFECT: According to the Assembly Appropriations Committee:
- Costs, likely in the low millions annually, to develop a Sickle Cell Disease center.
- Costs in the low millions annually to DPH to administer the program.
- To the extent this bill improves outcomes for individuals with Sickle Cell Disease, unknown cost savings to the state Medi-Cal program. According to a study of emergency department utilization among such patients in California based on data published by the Office of Statewide Health Planning and Development, sickle cell disease patients of all ages are heavily reliant on Medi-Cal (46%).
COMMENTS: According to the author, it is unthinkable that with all the advances in medical science, the life expectancy of an individual with sickle disease has not increased since the 1980s and remains at 45-50 years of age. Unfortunately, even though new and effective therapies exist for people who have sickle cell disease, there is no infrastructure to provide access to this care for many patients. Access to these therapies would improve the quality of life for people who have sickle cell disease by reducing hospitalization and ultimately decreasing the financial cost of this disease to the state. This bill will provide the infrastructure and expertise to decrease emergency room use and hospitalization for people suffering from sickle cell disease, thereby improving their quality of life. Currently there is no coordination of care and no standards of care for persons who have sickle cell disease in California. The state now spends hundreds of millions of dollars annually for substandard care and possibly unneeded emergency room use and hospitalization. By providing adequate care for people who have sickle cell disease outside the emergency room and decreasing both the need for and length of hospital stays, the enormous financial and social cost of sickle cell disease can be reduced.
Sickle cell disease affects approximately 7,000 people in the State of California. It is an inherited disease that affects primarily African Americans and Hispanics. The disease results in an abnormality in the oxygen-carrying protein hemoglobin found in red blood cells. This often causes the red blood cells to have a rigid, sickle-like shape, hence the name sickle cell disease. Problems in sickle cell disease typically begin around five to six months of age. A number of health problems may develop, such as attacks of pain ("sickle-cell crisis"), anemia, swelling in the hands and feet, bacterial infections, and stroke. It is a lifelong disease that generally becomes medically more complex with age.
Analysis Prepared by: John Gilman / HEALTH / (916) 319-2097 FN: 0000828
Date of Hearing: May 10, 2017
ASSEMBLY COMMITTEE ON APPROPRIATIONS
Lorena Gonzalez Fletcher, Chair
ABPCA Bill Id:AB 1488
Author:(Thurmond) – As Amended Ver:May 2, 2017
Policy Committee: | Health | Vote: | 13 - 2 |
|
|
Urgency: Yes State Mandated Local Program: No Reimbursable: No
SUMMARY:
This urgency bill establishes the Sickle Cell Disease (SCD) Centers grant program under the California Department of Public Health (CDPH) to improve treatment for that disease in the state, and appropriates funds for the centers and related administrative costs and grant programs. It also:
- Requires CDPH to coordinate between centers, evaluate the program on a biannual basis (every six months), a report to the Legislature on the outcome of the program.
- Appropriates $80 million over five fiscal years to fund the program, though a newly established, continuously appropriated account.
- Establishes criteria for the centers and for related grant programs.
- Requires CDPH to maintain a web-based information center with specified capabilities, including a telehealth capability that allows health providers to communicate with specialists.
- Repeals the program as of 2024.
FISCAL EFFECT:
- $20 million in 2017-18, and $15 million in each of the following four fiscal years.
- CDPH estimates at least four positions at a cost of $530,000 annually would be needed to administer the program. These costs are included in the appropriation.
- To the extent this bill improves outcomes for individuals with SCD, unknown cost savings to the state Medi-Cal program. According to a study of emergency department (ED) utilization among SCD patients in California based on data published by the Office of Statewide Health Planning and Development (OSHPD), SCD patients of all ages are heavily reliant on Medi-Cal (46%).
COMMENTS:
- Purpose. According to the author, the life expectancy of an individual with SCD has not increased since the 1980s and remains at 45-50 years of age, despite advances in medical science and treatment for the disease. This bill intends to create a network of interrelated centers, clinics, and other infrastructure and support to provide for the high-quality care in order to avoid emergency room use and hospitalization for persons who have SCD and improve their quality of life. This bill is sponsored by a specialist in SCD and supported by the Legislative Black Caucus.
- Background. According to the National Institutes of Health, the term SCD describes a group of inherited red blood cell disorders. Blood cells are misshapen and do not flow freely, resulting in problems related to lack of oxygen, blood clots, severe pain, and anemia due to the short life span of the sickle-shaped blood cells. Most children with SCD are pain-free between painful crises, but adolescents and adults may also suffer with chronic ongoing pain. The red cell sickling and poor oxygen delivery can also cause organ damage. Over a lifetime, SCD can harm numerous parts of the body. In the United States, most people with sickle cell disease (SCD) are of African ancestry or identify themselves as black. About one in every 365 black children is born with sickle cell disease.
According to the 2012 study published in the journal Pediatric Blood Cancer, "Sickle cell disease in California: sociodemographic predictors of emergency department utilization," patients living further from a self-identified provider of comprehensive SCD care had higher rates of ED visits and a lower likelihood of hospitalization from the ED. Publicly insured patients had higher rates of ED visits and were more likely to be in the highest tier of users than were the privately insured or uninsured.
Analysis Prepared by: Lisa Murawski / APPR. / (916) 319-2081
Date of Hearing: April 25, 2017
ASSEMBLY COMMITTEE ON HEALTH
Jim Wood, Chair
ABPCA Bill Id:AB 1488
Author:(Thurmond) – As Amended Ver:April 17, 2017
SUBJECT: Health care: genetic diseases.
SUMMARY: Requires the Department of Public Health (DPH) to establish up to four Sickle Cell Disease Centers (centers) that are responsible for coordinating care of people with sickle cell disease and for providing specified training and outreach services for patients and health care professionals. Specifically, this bill:
- Requires DPH to establish a Sickle Cell Disease Center pilot program, which does all of the following:
- Creates a competitive grant program administered by DPH to establish three or four centers. Specifies qualifications for an applicant to receive a grant;
- Enables coordination between the centers to improve the care of people who have sickle cell disease and to establish a seamless sickle cell treatment program in the state; and,
- Evaluates the overall program on a biannual basis.
- Requires two centers to be established in Southern California, one center in Northern California, and one center, if established, in a location to be determined by DPH to best serve the population of state residents with sickle cell disease.
- Requires each center to provide various services and collaborations, including, but not limited to, the following:
- Primary care for patients with sickle cell disease;
- Outreach to the community;
- Support a statewide database of people with sickle cell disease;
- Sickle cell disease and trait counseling; and,
- Transfusion services, as specified.
- Requires each center to have an identified medical director.
- Requires DPH, with the assistance of the centers, to establish and maintain an Internet Web-based information center with specified capabilities.
- Requires DPH to convene an eight member advisory committee that includes one individual with sickle cell disease, one parent of a child with the disease, and six other specified individuals.
- Requires DPH to report no later than January 1, 2021 to the Legislature and the Governor on the efficacy of the program.
- Establishes in the State Treasury the Sickle Cell Disease Centers Program Account, which is continuously appropriated to DPH, to be used to fund the grant program established by this bill. Specifies allocation amounts for various activities, including: a) $1.5 million per fiscal year (FY) for each center for participation in the pilot program; b) $100,000 per year for a State Sickle Cell Disease Conference; c) up to $1million for the acquisition of major purchase items for use at centers, including, but not limited to, specialized medical equipment for the treatment of sickle cell disease; d) up to $1 million which may be distributed by DPH upon request by the centers, to aid in the transportation of patients to access the centers; e) $250,000 to defray the actual travel and attendance costs of quarterly meetings of the advisory committee; f) $1 million in FY 2017-18 for the development of an Internet Web-based information center, as specified, and $500,000 for each year thereafter for its continued operation and maintenance; g) $500,000 in FY 2017-18 for the development of a database to track patients with sickle cell disease, including the location and number of persons with the disease, hospitalization, rehospitalization, and emergency room use by those patients, and $250,000 for each year thereafter.
- Permits the remaining funds to be used by DPH, in its discretion, for any or all of the following:
- Grants to health care providers or clinics that are not affiliated with an established center but that provide care to patients with sickle cell disease;
- Grants for the establishment and maintenance of a telehealth system or an online consultation service to support patients with sickle cell disease and the health care professionals who treat them; and,
- Hemoglobinopathy testing to confirm diagnosis of sickle cell disease in patients in California and parents of children known to have sickle cell disease.
- Appropriates from the general fund the following amounts:
- For FY 2017-18 fiscal year, $20 million: and,
- For the ensuing four FY, $15 million.
- Sunsets the provisions of this bill on January 1, 2024.
EXISTING LAW:
- Permits DPH to require that a sickle cell anemia test be given to any identifiable segment of the population that DPH determines is susceptible to sickle cell anemia at a disproportionately higher ratio than is the balance of the population.
- Permits DPH to make grants or contracts for demonstration projects to determine the feasibility of alternate methods of testing for sickle cell anemia, to provide counseling services, to evaluate the social consequences of the identification of sickle cell trait carriers, to provide training in genetic counseling, and to conduct research on the prevention of sickle cell anemia.
- Requires the Department of Health Care Services to establish and administer a program for the medical care of persons with genetically handicapping conditions, including sickle cell anemia.
FISCAL EFFECT: This bill has not yet been analyzed by a fiscal committee.
COMMENTS:
- PURPOSE OF THIS BILL. According to the author, it is unthinkable that with all the advances in medical science, the life expectancy of an individual with sickle disease has not increased since the 1980s and remains at 45-50 years of age. Unfortunately, even though new and effective therapies exist for people who have sickle cell disease, there is no infrastructure to provide access to this care for many patients. Access to these therapies would improve the quality of life for people who have sickle cell disease by reducing hospitalization and ultimately decreasing the financial cost of this disease to the state. This bill will provide the infrastructure and expertise to decrease emergency room use and hospitalization for people suffering from sickle cell disease, thereby improving their quality of life. Currently there is no coordination of care and no standards of care for persons who have sickle cell disease in California. The state now spends hundreds of millions of dollars annually for substandard care and possibly unneeded emergency room use and hospitalization.
The author states that this bill seeks to create a network of interrelated centers, clinics, and other infrastructure and support to provide for the care of persons who have sickle cell disease, with the express purpose of providing best care practices within the state, to provide access to therapies that are currently available but under-utilized, with the purpose of decreasing emergency room use and hospitalization for persons who have sickle cell disease and improving their quality of life. By providing adequate care for people who have sickle cell disease outside the emergency room and decrease both the need for and length of hospital stays, the enormous financial and social cost of sickle cell disease can be reduced. - BACKGROUND. Sickle cell disease affects approximately 7,000 people in the State of California. It is an inherited disease that affects primarily African Americans and Hispanics. The disease results in an abnormality in the oxygen-carrying protein hemoglobin found in red blood cells. This often causes the red blood cells to have a rigid, sickle-like shape, hence the name sickle cell disease. Problems in sickle cell disease typically begin around five to six months of age. A number of health problems may develop, such as attacks of pain ("sickle-cell crisis"), anemia, swelling in the hands and feet, bacterial infections, and stroke. It is a lifelong disease that generally becomes medically more complex with age. According to the sponsor, for those with this disease the quality of life is poor related to the fact that there are few physicians specializing in adult sickle cell disease in the state (between two and six physicians). There is no coordination of care or resources within the state, there are no agreed upon standards of care within the state, the quality of care is substandard in many cases. It has been known for decades that the care for children who have sickle cell disease is very good if they live near a center and that the care for those over the age of 18 is substandard across the state. Morbidity and mortality rise exponentially after the age of 18. Life expectancy has not changed since the 1980’s and remains between 45 and 50 years for most. Due to the lack of coordinated care young adults and older persons who have sickle cell disease disproportionately utilize emergency rooms and have high hospital admission rates and hospital readmission rates. There are treatments for sickle cell disease, but due to the lack of expertise and dedicated physicians few people who have sickle cell disease have access to these therapies.
On April 20, 2017, the New England Journal of Medicine (Journal) published a detailed review article about sickle cell disease which the Journal notes is an increasing global health problem. Estimates suggest that every year approximately 300,000 infants are born with sickle cell anemia. The Journal reports that recent studies of nongenetic factors, including climate and air quality, suggest more complex associations between environmental factors and clinical complications. New treatments and management strategies accounting for genetic and nongenetic factors could substantially and rapidly improve the quality of life and reduce health care costs for patients with sickle cell disease. - SUPPORT. Supporters of this bill argue that it is a multi-tiered solution to the health care crisis facing those living with sickle cell disease. The cost is high both to those affected in terms of their quality of life and to the state in terms of health care expenditures. In 2014, it was estimated that the cost of hospitalization and emergency room visits alone cost the state approximately $400 million; the dollar cost today is surely higher. That cost does not include outpatient care, imaging studies, and pharmaceuticals. Although the care for children who have sickle cell disease has led to a 97% survival rate to age eighteen, the same cannot be said for those who are older. Supporters point out that morbidity and mortality exponentially increases beyond the age of 18 leading to unnecessary death and disability in young adults who have sickle cell disease. The life expectancy for those who have sickle cell disease continues to be approximately 45 years and has not changed since 1980 despite the fact there is effective therapy for this disease. This discrepancy between the care of children and young adults is one of access, lack of coordination of care, and the absence of any standards of care in the state. Supporters argue that this bill is designed to remedy this inequitable care for people who have sickle cell disease by creating infrastructure and support of health care providers and patients. By overcoming the lack of coordinated care, support, and access to therapy this bill has the potential to save the state money while improving and extending the lives of people who have sickle cell disease.
- COMMENTS.
- The author proposes to amend this bill in committee to add an urgency clause.
- The provisions of this bill sunset on January 1, 2024; however, funding provided by this bill ends on June 30, 2022. The author may wish to clarify his intent in changing the sunset.
REGISTERED SUPPORT / OPPOSITION:
Support
Keith Quirolo, M.D. (sponsor)
California Legislative Black Caucus
Wendy Bloom, Staff RN, Benioff Children’s Hospital Oakland
Opposition
None on file.
Analysis Prepared by: John Gilman / HEALTH / (916) 319-2097
Discussed in Hearing
1H
Senate Standing Committee on Appropriations
7MIN
Senate Standing Committee on Public Safety
4MIN
Assembly Floor
1H
Assembly Standing Committee on Appropriations
2MIN
Assembly Standing Committee on Health
Bill Author
Bill Co-Author(s):