Existing law requires the State Department of Public Health to provide public and professional education on Alzheimers disease to educate consumers, caregivers, and health care providers, and to increase public awareness.

This bill would require the Center for Healthy Communities, within the department, on or before January 1, 2021, to update the 2009 Alzheimers Disease Facts and Figures in California: Current Status and Future Projections to quantify the burden of Alzheimers disease on at-risk and underrepresented populations, including African Americans, Asian-Pacific Islanders, Latinos, Hispanics, and women. The bill would repeal these provisions on January 1, 2025.

Existing law requires the State Department of Public Health to provide public and professional education on Alzheimers disease to educate consumers, caregivers, and health care providers, and to increase public awareness.

This bill would require the Center for Healthy Communities, within the department, on or before January 1, 2021, to update the 2009 Alzheimers Disease Facts and Figures in California: Current Status and Future Projections to quantify the burden of Alzheimers disease on at-risk and underrepresented populations, including African Americans, Asian-Pacific Islanders, Latinos, Hispanics, and women. The bill would repeal these provisions on January 1, 2025.

Existing law requires the State Department of Public Health to provide public and professional education on Alzheimers disease to educate consumers, caregivers, and health care providers, and to increase public awareness. Existing law requires the department to establish an Office of Health Equity for the purpose of, among other things, improving the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities. Existing law establishes an advisory committee within the Office of Health Equity to advance the goals of the office. Existing law requires that members of the advisory committee be composed of representatives from applicable state agencies and departments, local health departments, community-based organizations, organizations working to advance health and mental health equity, vulnerable communities, and stakeholder communities that represent the diverse demographics of the state.

This bill would require at least one member of the advisory committee described above to have a background in Alzheimers disease and aging. The bill would require the department to implement a public outreach program at all California Alzheimers Disease Centers to educate the public on the availability, purpose, and value of research and clinical trials related to Alzheimers disease. The bill would require that the goal of the program be to increase public awareness and participation in research and clinical trials related to Alzheimers disease, particularly among individuals from traditionally underrepresented groups.

The bill would require the Office of Health Equity to conduct a study to determine the human burden and economic costs of Alzheimers disease in California on African Americans, Latinos, and women. The bill would require the office, on or before January 1, 2020, to submit a report to the Legislature summarizing the findings of the study. The bill would repeal these provisions on January 1, 2024.

Existing law requires the State Department of Public Health to provide public and professional education on Alzheimers disease to educate consumers, caregivers, and health care providers, and to increase public awareness. Existing law requires the department to establish an Office of Health Equity for the purpose of, among other things, improving the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities. Existing law establishes an advisory committee within the Office of Health Equity to advance the goals of the office. Existing law requires that members of the advisory committee be composed of representatives from applicable state agencies and departments, local health departments, community-based organizations, working to advance health and mental health equity, vulnerable communities, and stakeholder communities that represent the diverse demographics of the state.

The bill would require the office Office of Health Equity to conduct a study to determine the human burden and economic costs of Alzheimers disease in California on African Americans, Latinos, and women. The bill would require the office, on or before January 1, 2020, to submit a report to the Legislature summarizing the findings of the study. The bills provisions would be repealed January 1, 2024. The bill would repeal these provisions on January 1, 2024.

Existing law requires the State Department of Public Health to provide public and professional education on Alzheimers disease to educate consumers, caregivers, and health care providers, and to increase public awareness. Existing law requires the department to establish an Office of Health Equity for the purpose of, among other things, improving the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities.

This bill would declare the intent of the Legislature to enact legislation that would require the department to conduct a study examining the impact of Alzheimers disease on minorities and women. require the office to conduct a study to determine the human burden and economic costs of Alzheimers disease in California on African Americans, Latinos, and women. The bill would require the office, on or before January 1, 2020, to submit a report to the Legislature summarizing the findings of the study. The bills provisions would be repealed January 1, 2024.

Existing law requires the State Department of Public Health to provide public and professional education on Alzheimers disease to educate consumers, caregivers, and health care providers, and to increase public awareness.

This bill would declare the intent of the Legislature to enact legislation that would require the department to conduct a study examining the impact of Alzheimers disease on minorities and women.

 UNFINISHED BUSINESS  

Bill No: SB 1292

Author:

:

Vote:

SENATE HEALTH COMMITTEE: 9-0, 4/18/18

AYES: Hernandez, Nguyen, Leyva, Mitchell, Monning, Newman, Nielsen, Pan, Roth

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/25/18

AYES: Lara, Bates, Beall, Bradford, Hill, Nielsen, Wiener

SENATE FLOOR: 36-0, 5/30/18

AYES: Allen, Anderson, Atkins, Bates, Beall, Bradford, Dodd, Fuller, Gaines, Galgiani, Glazer, Hernandez, Hertzberg, Hill, Hueso, Jackson, Lara, Leyva, McGuire, Mitchell, Monning, Moorlach, Morrell, Newman, Nguyen, Nielsen, Pan, Portantino, Roth, Skinner, Stern, Stone, Vidak, Wieckowski, Wiener, Wilk

NO VOTE RECORDED: Berryhill, Cannella, De León

ASSEMBLY FLOOR: 79-0, 8/30/18 - See last page for vote

SUBJECT:

SOURCE: Alzheimer’s Association

Latino Coalition for a Healthy California

DIGEST:

This bill requires the Center for Healthy Communities within the Department of Public Health to, on or before January 1, 2021, update the 2009 Alzheimer’s Disease Facts and Figures in California: Current Status and Future Projections to quantify the burden of Alzheimer’s disease on at-risk and underrepresented populations, including African Americans, Asian-Pacific Islanders, Latinos, Hispanics, and women.

Assembly Amendments

delete a requirement that the Office of Health Equity conduct a study to determine the human burden and economic costs of Alzheimer’s disease on African Americans, Latinos and women, and instead require the Center for Health Communities, with the Department of Public Health (DPH) to update a prior report to quantify the burden of Alzheimer’s disease on at-risk and underrepresented populations; and, delete a requirement that at least one member of the Alzheimer’s Disease and Related Disorders Advisory Committee to have background in Alzheimer’s disease and aging.

ANALYSIS:

Existing law:

1. Establishes DPH in the California Health and Human Services Agency (CHHS). [GOV §12803]
2. Establishes the Alzheimer’s Disease and Related Disorders Advisory Committee within DPH. [HSC §1568.15 - 1568.17]
3. Encourages the establishment of California Alzheimer’s Disease Centers (CADCs), which are geographically dispersed diagnostic and treatment centers for Alzheimer’s disease within every postsecondary higher educational institution with a medical center, to encourage research to discover the cause of, and a cure for, Alzheimer’s disease. [HSC §125275]
4. Requires DPH to establish an Office of Health Equity for the purposes of aligning state resources, decision making. [HSC §131019.5]
5. Requires state agencies, and expresses intent that the University of California, include, in appropriate periodic progress reports required under existing law, data on the extent to which state funds administered by those agencies and the University of California, or both, are used by grantees to support research on diseases, disorders, and health conditions that includes women and minorities in research trials, and that studies diseases, disorders, and health conditions of particular concern to women and minorities. States intent that the research includes Alzheimer’s disease as well as other diagnoses. [HSC §100239]

This bill:

1. Requires the Center for Healthy Communities within the Department of Public Health to, on or before January 1, 2021, update the 2009 Alzheimer’s Disease Facts and Figures in California: Current Status and Future Projections to quantify the burden of Alzheimer’s disease on at-risk and underrepresented populations, including African Americans, Asian-Pacific Islanders, Latinos, Hispanics, and women.

Comments

1. Author’s statement. According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer’s disease on underrepresented communities including African-Americans, Latinos, and women. According to a recent national study, African-Americans are about two times more likely than white Americans to have Alzheimer’s and other dementias, and Latinos are 1.5 times more likely to have Alzheimer’s. When-and if-diagnosed, African-Americans and Latinos are notified in the later stages of the disease. As a result, African-Americans and Latinos diagnosed with Alzheimer’s use substantially more hospital, physician, and home health services – and incur substantially higher costs for those services – than white counterparts. The number of African-Americans and Latinos living with Alzheimer’s is expected to increase significantly by 2025, placing unprecedented demands on our healthcare system. Further, by 2030, the number of African-Americans with Alzheimer’s disease is expected to more than double from 2.7 million to 6.9 million. Respectively, the number of Latinos with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender, and caregiver statistics and address modifiable risk factors.
2. Alzheimer’s disease program. The Alzheimer's Disease Program (Program) was established to meet the legislative mandates of relieving the human burden and economic cost of Alzheimer's disease and related dementias, and to assist in ultimately discovering the cause and treatment of these diseases. The Program administers a statewide network of 10 CADCs at university medical centers. CADCs are located at: UC Davis (Sacramento and Walnut Creek sites), UCLA, USC (Los Angeles and Rancho Los Amigos sites), UCSF (San Francisco and Fresno sites), Stanford University, UC Irvine, and UC San Diego. These centers are dedicated to improving the quality of life of persons affected with Alzheimer's disease and their families by providing diagnostic and treatment services; professional training for medical residents, postdoctoral fellows, nurses, interns, and medical students; and community education such as caregiver training and support. The Program also administers the Alzheimer's Disease Research Fund, which awards grants through a competitive process to scientists in California engaged in the study of Alzheimer's disease and related disorders. Key partners include: California Department of Aging, Alzheimer's Association, California Health and Human Services Alzheimer's Disease and Related Disorders Advisory Committee, Caregiver Resources Centers, and Area Agencies on Aging. The research program is solely dependent on donations from California taxpayers on their State income tax forms.
3. 2017 Guideline for Alzheimer’s disease management. The 2017 Guideline is a required legislative report that includes an overview of the workgroup meetings that were held and recommendations from the working group that developed the Guideline. The 2017 Guideline aligns with SB 613 (Allen, Chapter 577, Statutes of 2015) and is designed to improve Alzheimer’s disease management. The Guideline assists primary care physicians with Alzheimer’s disease patients under their care, and offers resources for other forms of dementia including mild cognitive impairment. The 2017 Guideline report concludes that it is vital that California maintain and build upon its accomplishments by supporting this valuable and unique network of CADCs. Additionally, the Guideline concludes that it is important to incorporate public health approaches to prepare for significant growth in Alzheimer’s disease. The Guideline states that expanding upon existing resources, such as the data collected by the Program, can further assist in program refinement, grant submissions and implementation of the California’s Alzheimer’s Disease State Plan. According to the Guideline, the Program aims to set the stage for action and inclusiveness, and help improve delivery and efficacy of treatment through informing caregivers about how to seek optimal care, while expanding education and community outreach to underserved communities. The Program will continue to develop and provide culturally sensitive diagnostic tools to meet the needs of California's diverse seniors, in collaboration with stakeholders.
4. Alzheimer’s disease Facts and Figures in California: Current Status and Future Projections. In February of 2009, the Alzheimer’s Association published the report, Alzheimer’s disease Facts and Figures in California. The report executive summary indicates that, over the next 20 years, the impact of Alzheimer’s disease on the State of California will increase dramatically. The leading edge of the baby boomer generation turned 62 in 2009 and the report details the broad and significant implications that this increased prevalence of Alzheimer’s disease and related conditions will have on California’s businesses, public programs, and affected families.

FISCAL EFFECT: Appropriation: Fiscal Com.: Local:

According to the Assembly Appropriations Committee, $180,000 GF per year for two years to DPH to contract for the report and for related administrative costs.

SUPPORT: (Verified 8/30/18)

Alzheimer’s Association (co-source)

Latino Coalition for a Healthy California (co-source)

AARP California

California Assisted Living Association

California Commission on Aging

California Pan-Ethnic Health Network

California Rural Legal Assistance Foundation

Mi Familia Vota

Services, Immigrant Rights, and Education Network

Street Level Health Project

UDW/AFSCME Local 3930

OPPOSITION: (Verified 8/30/18)

None received

ARGUMENTS IN SUPPORT: The Alzheimer’s Association writes that this bill expands research to better understand the disproportionate burden and economic costs of Alzheimer’s disease on underrepresented communities. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender and caregiver statistics and address modifiable risk factors. Importantly, this bill addressed the need for research and data collection to improve the human burden and economic toll of Alzheimer’s disease. The California Pan-Ethnic Health Network writes that the number of African-Americans with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million by 2030. California is uniquely positioned to combat this inequity with increased data collection, research participation and surveillance within its diverse communities.

ASSEMBLY FLOOR: 79-0, 8/30/18

AYES: Acosta, Aguiar-Curry, Travis Allen, Arambula, Baker, Berman, Bigelow, Bloom, Bonta, Brough, Burke, Caballero, Calderon, Carrillo, Cervantes, Chau, Chávez, Chen, Chiu, Chu, Cooley, Cooper, Cunningham, Dahle, Daly, Eggman, Flora, Fong, Frazier, Friedman, Gabriel, Gallagher, Cristina Garcia, Eduardo Garcia, Gipson, Gloria, Gonzalez Fletcher, Gray, Grayson, Harper, Holden, Irwin, Jones-Sawyer, Kalra, Kamlager-Dove, Kiley, Lackey, Levine, Limón, Low, Maienschein, Mathis, Mayes, McCarty, Medina, Melendez, Mullin, Muratsuchi, Nazarian, Obernolte, O'Donnell, Patterson, Quirk, Quirk-Silva, Reyes, Rivas, Rodriguez, Rubio, Salas, Santiago, Steinorth, Mark Stone, Thurmond, Ting, Voepel, Waldron, Weber, Wood, Rendon

NO VOTE RECORDED: Choi

Prepared by:

8/30/18 20:54:28

**** END ****

SENATE THIRD READING

STR Bill Id:SB 1292

Author:(Hueso)

As Amended Ver:August 23, 2018

Majority vote

SENATE VOTE: 36-0

SUMMARY: Requires the Center for Healthy Communities, within the California Department of Public Health (DPH), to, update the 2009 Alzheimer's Disease Facts and Figures in California: Current Status and Future Projections (Report) to quantify the burden of Alzheimer's disease on at-risk and underrepresented populations, including African Americans, Asian-Pacific Islanders, Latinos, Hispanics, and women; and, requires the Report to be updated on or before January 1, 2021 and sunset the new provisions of the bill on January 1, 2025.

FISCAL EFFECT: According to the Assembly Appropriations Committee $180,000 in general fund costs per year for two years to DPH to contract for the report and for related administrative costs.

COMMENTS: According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer's disease on underrepresented communities including African-Americans, Latinos, and women. According to a recent national study, African-Americans are about two times more likely than white Americans to have Alzheimer's and other dementias, and Latinos are 1.5 times more likely to have Alzheimer's. When-and if-diagnosed, African-Americans and Latinos are notified in the later stages of the disease. As a result, African-Americans and Latinos diagnosed with Alzheimer's use substantially more hospital, physician, and home health services – and incur substantially higher costs for those services – than white counterparts. The number of African-Americans and Latinos living with Alzheimer's is expected to increase significantly by 2025, placing unprecedented demands on our healthcare system. Further, by 2030, the number of African-Americans with Alzheimer's disease is expected to more than double from 2.7 million to 6.9 million. Respectively, the number of Latinos with Alzheimer's disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender, and caregiver statistics and address modifiable risk factors.

Alzheimer's disease is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. Dementia is a general term for memory loss and other cognitive problems that are serious enough to interfere with daily life.

Alzheimer's disease accounts for 60 to 80% of dementia cases. Currently there is no cure for Alzheimer's, but treatments for symptoms are available and research continues. Although current Alzheimer's treatments cannot stop the disease from progressing, they can temporarily slow the worsening of dementia symptoms, and improve quality of life for those with Alzheimer's and their caregivers.

The Office of Health Equity (OHE) was established to provide a key leadership role to reduce health and mental health disparities to vulnerable communities. A priority of this office is building of cross-sectoral partnerships. The work of OHE is informed, in part, by its advisory committee and stakeholder meetings. The OHE consults with community-based organizations and local governmental agencies to ensure that community perspectives and input are included in policies and any strategic plans, recommendations, and implementation activities. OHE is organized into three operational units whose focus is to strengthen DPH's ability to advise and assist other state departments, provide data that facilitates action, and engage partners. These units are the Community Development and Engagement Unit, Health Research and Statistics Unit, and the Health Equity Policy and Planning Unit.

The California Commission on Aging states in support that Alzheimer's disease is the 6th leading cause of death in the nation and the most costly to treat. African-Americans, Latinos, and women are most at risk of developing the disease, with families, their communities, and, often, the state bearing the costs of care. As Californians continue to live longer, the likelihood of their developing Alzheimer's disease or another form of dementia increases, making this a critical topic in planning the state's efforts to ensure access to appropriate treatment and care.

There is no known opposition to this bill.

Analysis Prepared by: Paula Villescaz / HEALTH / (916) 319-2097 FN: 0004552

SENATE THIRD READING

STR Bill Id:SB 1292

Author:(Hueso)

As Amended Ver:May 25, 2018

Majority vote

SENATE VOTE: 36-0

SUMMARY: Requires the Office of Health Equity (OHE) to conduct a study to determine the human burden and economic costs of Alzheimer's disease in California on African Americans, Latinos, and women; requires the study to examine county disease prevalence data statistics, analyze demographic trends, evaluate ethnicity, gender, and caregiver statistics, and address modifiable risk factors; and, requires the OHE to submit a report to the Legislature on or before January 1, 2020, summarizing the findings of the study.

FISCAL EFFECT: According to the Assembly Appropriations Committee $180,000 in general fund costs per year for two years to California Department of Public Health (DPH) to contract for the report and for related administrative costs. 

COMMENTS: According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer's disease on underrepresented communities including African-Americans, Latinos, and women. According to a recent national study, African-Americans are about two times more likely than white Americans to have Alzheimer's and other dementias, and Latinos are 1.5 times more likely to have Alzheimer's. When-and if-diagnosed, African-Americans and Latinos are notified in the later stages of the disease. As a result, African-Americans and Latinos diagnosed with Alzheimer's use substantially more hospital, physician, and home health services – and incur substantially higher costs for those services – than white counterparts. The number of African-Americans and Latinos living with Alzheimer's is expected to increase significantly by 2025, placing unprecedented demands on our healthcare system. Further, by 2030, the number of African-Americans with Alzheimer's disease is expected to more than double from 2.7 million to 6.9 million. Respectively, the number of Latinos with Alzheimer's disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender, and caregiver statistics and address modifiable risk factors.

Alzheimer's disease is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. Dementia is a general term for memory loss and other cognitive problems that are serious enough to interfere with daily life.

Alzheimer's disease accounts for 60 to 80% of dementia cases. Currently there is no cure for Alzheimer's, but treatments for symptoms are available and research continues. Although current Alzheimer's treatments cannot stop the disease from progressing, they can temporarily slow the worsening of dementia symptoms, and improve quality of life for those with Alzheimer's and their caregivers.

The OHE was established to provide a key leadership role to reduce health and mental health disparities to vulnerable communities. A priority of this office is building of cross-sectoral partnerships. The work of OHE is informed, in part, by its advisory committee and stakeholder meetings. The OHE consults with community-based organizations and local governmental agencies to ensure that community perspectives and input are included in policies and any strategic plans, recommendations, and implementation activities. OHE is organized into three operational units whose focus is to strengthen DPH's ability to advise and assist other state departments, provide data that facilitates action, and engage partners. These units are the Community Development and Engagement Unit, Health Research and Statistics Unit, and the Health Equity Policy and Planning Unit.

The California Commission on Aging states in support that Alzheimer's disease is the 6th leading cause of death in the nation and the most costly to treat. African-Americans, Latinos, and women are most at risk of developing the disease, with families, their communities, and, often, the state bearing the costs of care. As Californians continue to live longer, the likelihood of their developing Alzheimer's disease or another form of dementia increases, making this a critical topic in planning the state's efforts to ensure access to appropriate treatment and care.

There is no known opposition to this bill.

Analysis Prepared by: Paula Villescaz / HEALTH / (916) 319-2097 FN: 0004195

Date of Hearing: June 27, 2018

ASSEMBLY COMMITTEE ON APPROPRIATIONS

Lorena Gonzalez Fletcher, Chair

SBPCA Bill Id:SB 1292

Author:(Hueso) – As Amended Ver:May 25, 2018

Urgency: No State Mandated Local Program: No Reimbursable: No

SUMMARY:

This bill requires the Office of Health Equity (OHE) within the California Department of Public Health (CDPH) to conduct a study on the human burden and economic costs of Alzheimer’s disease in California on African Americans, Latinos, and women, as specified, and submit a report to the Legislature on or before January 1, 2020.

It also requires at least one member of the OHE advisory committee to have a background in Alzheimer’s disease and aging.

FISCAL EFFECT:

$180,000 GF per year for two years to CDPH to contract for the report and for related administrative costs.

COMMENTS:

1. Purpose. According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer’s disease on underrepresented communities including African-Americans, Latinos, and women. The author explains there is an immediate need for research and data collection to analyze these demographic trends; evaluate ethnicity, gender, and caregiver statistics; and address modifiable risk factors.
2. Background. Currently, there are nearly 600,000 Californians 55 and older living with Alzheimer’s disease. Alzheimer's is the most common form of dementia, a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. According to a study released in 2010 by the Alzheimer's Association, African-Americans are about two times more likely than white Americans to have Alzheimer’s and other dementias. Latinos are 1.5 times more likely than white Americans to have Alzheimer’s and other dementias.

Analysis Prepared by: Lisa Murawski / APPR. / (916) 319-2081

Date of Hearing: June 19, 2018

ASSEMBLY COMMITTEE ON HEALTH

Jim Wood, Chair

SBPCA Bill Id:SB 1292

Author:(Hueso) – As Amended Ver:May 25, 2018

SENATE VOTE: 36-0

SUBJECT: Alzheimer’s disease.

SUMMARY: Requires the Office of Health Equity (OHE) to conduct a study to determine the human burden and economic costs of Alzheimer’s disease in California on African Americans, Latinos, and women; requires the study to examine county disease prevalence data statistics, analyze demographic trends, evaluate ethnicity, gender, and caregiver statistics, and address modifiable risk factors; and, requires the OHE to submit a report to the Legislature on or before January 1, 2020, summarizing the findings of the study.

EXISTING LAW:

1. Establishes the Department of Public Health (DPH) within the California Health and Human Services Agency.
   
2. Establishes the Alzheimer’s Disease and Related Disorders Advisory Committee within DPH.
3. Encourages the establishment of California Alzheimer’s Disease Centers (CADCs), which are geographically dispersed diagnostic and treatment centers for Alzheimer’s disease within every postsecondary higher educational institution with a medical center, to encourage research to discover the cause of, and a cure for, Alzheimer’s disease.
4. Requires the functions of the CADCs to be designed to serve all of the following purposes:
   1. To provide diagnostic and treatment services and improve the quality of care to victims of Alzheimer’s disease;
   2. To increase research by faculty and students in discovering the cause of, and a cure for, Alzheimer’s disease;
   3. To provide training, monitoring, consultation, and continuing education to the families of those who are affected by Alzheimer’s disease;
   4. To increase the training of health care professionals with respect to Alzheimer’s disease and other acquired brain impairments to the extent that the centers have the requisite expertise; and,
   5. Authorizes the CADCs to collaborate with the Caregiver Resource Centers for Cognitively Impaired Adults, as specified.
      
5. Requires DPH to establish an OHE for the purposes of aligning state resources, decision making, and programs to accomplish all of the following:
   1. Achieve the highest level of health and mental health for all people, with special attention focused on those who have experienced socioeconomic disadvantage and historical injustice, including, but not limited to, vulnerable communities and culturally, linguistically, and geographically isolated communities;
6. Work collaboratively with the Health in All Policies Task Force to promote work to prevent injury and illness through improved social and environmental factors that promote health and mental health;
7. Advise and assist other state departments in their mission to increase access to, and the quality of, culturally and linguistically competent health and mental health care and services; and,
8. Improve the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities.
9. Requires state agencies, and expresses intent that the University of California (UC), include, in appropriate periodic progress reports required under existing law, data on the extent to which state funds administered by those agencies and the UC, or both, are used by grantees to support research on diseases, disorders, and health conditions that includes women and minorities in research trials, and that studies diseases, disorders, and health conditions of particular concern to women and minorities. States intent that the research includes Alzheimer’s disease as well as other diagnoses.

FISCAL EFFECT: According to the Senate Appropriations Committee, a possible cost of $137,454 for DPH personnel to conduct a study to determine the Alzheimer’s disease burden.

COMMENTS:

1. PURPOSE OF THIS BILL. According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer’s disease on underrepresented communities including African-Americans, Latinos, and women. According to a recent national study, African-Americans are about two times more likely than white Americans to have Alzheimer’s and other dementias, and Latinos are 1.5 times more likely to have Alzheimer’s. When-and if-diagnosed, African-Americans and Latinos are notified in the later stages of the disease. As a result, African-Americans and Latinos diagnosed with Alzheimer’s use substantially more hospital, physician, and home health services – and incur substantially higher costs for those services – than white counterparts. The number of African-Americans and Latinos living with Alzheimer’s is expected to increase significantly by 2025, placing unprecedented demands on our healthcare system. Further, by 2030, the number of African-Americans with Alzheimer’s disease is expected to more than double from 2.7 million to 6.9 million. Respectively, the number of Latinos with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender, and caregiver statistics and address modifiable risk factors.
2. BACKGROUND. Alzheimer's disease is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. Dementia is a general term for memory loss and other cognitive problems that are serious enough to interfere with daily life.

Alzheimer's disease accounts for 60 to 80% of dementia cases. Currently there is no cure for Alzheimer's, but treatments for symptoms are available and research continues. Although current Alzheimer's treatments cannot stop the disease from progressing, they can temporarily slow the worsening of dementia symptoms, and improve quality of life for those with Alzheimer's and their caregivers.

OHE. The OHE was established to provide a key leadership role to reduce health and mental health disparities to vulnerable communities. A priority of this office is building of cross-sectoral partnerships. The work of OHE is informed, in part, by its advisory committee and stakeholder meetings. The OHE consults with community-based organizations and local governmental agencies to ensure that community perspectives and input are included in policies and any strategic plans, recommendations, and implementation activities. OHE is organized into three operational units whose focus is to strengthen DPH's ability to advise and assist other state departments, provide data that facilitates action, and engage partners. These units are the Community Development and Engagement Unit, Health Research and Statistics Unit, and the Health Equity Policy and Planning Unit.

1. SUPPORT. The California Commission on Aging states in support that Alzheimer’s disease is the 6th leading cause of death in the nation and the most costly to treat. African-Americans, Latinos, and women are most at risk of developing the disease, with families, their communities, and, often, the state bearing the costs of care. As Californians continue to live longer, the likelihood of their developing Alzheimer’s disease or another form of dementia increases, making this a critical topic in planning the state’s efforts to ensure access to appropriate treatment and care.
2. RELATED LEGISLATION.
   1. AB 614 (Limón) of 2017, requires each Area Agency on Aging, in consultation with local organizations with expertise in Alzheimer’s care to develop an evidence-based or evidence-informed core training program relating to Alzheimer’s disease and dementia, and any additional training based on local needs only to the extent that funds are appropriated by the Legislature for that purpose. AB 614 was held on the Senate Appropriations Committee suspense file.
   2. AB 1955 (Limón) of 2018, requires the Department of Aging to implement a public awareness campaign of the warning signs of Alzheimer’s disease and dementia in order to promote early detection and accurate diagnosis. AB 1955 was held in the Assembly Appropriations Committee.
3. PREVIOUS LEGISLATION.
   1. SB 449 (Monning), Chapter 282, Statutes of 2017, requires at least two of the 60 hours of classroom training that is required as part of the training program for certified nurse assistants to address the special needs of persons with Alzheimer’s disease and related dementias.
   2. AB 1200 (Cervantes), Chapter 618, Statutes of 2017, establishes an Aging and Disability Resource Center program to provide information to consumers and their families on available long-term services and supports (LTSS) programs, and to assist older adults, caregivers, and persons with disabilities in accessing LTSS programs at the local level.
   3. SB 97 (Committee on Budget), Chapter 11, Statutes of 2015, among many other provisions requires appropriations for funding for the Alzheimer’s Research Centers to be used for direct services, including, but not limited to, diagnostic screening, case management, disease management, support for caregivers, and related services necessary for positive client outcomes.
   4. SB 613 (Allen), Chapter 577, Statutes of 2015, requires DPH to convene a multidisciplinary workgroup to update the 2008 Guideline for Alzheimer’s Disease Management in California, and to submit a report from the workgroup to the Legislature, on or before March 1, 2017. SB 613 also permits the workgroup to draw on evidence-based, peer reviewed research and lessons learned from demonstration and pilot projects in updating the Guideline. The updated Guideline was approved by California Health and Human Services Agency on March 15, 2017.

REGISTERED SUPPORT / OPPOSITION:

Support

Alzheimer’s Association (cosponsor)

Latino Coalition for a Healthy California (cosponsor)

AARP California

California Assisted Living Association

California Commission on Aging

California Life Sciences Association

California Pan-Ethnic Health Network

California Rural Legal Assistance Foundation

Mi Familia Vota

Services, Immigrant Rights, and Education Network

Street Level Health Project

Opposition

None on file.

Analysis Prepared by: Paula Villescaz / HEALTH / (916) 319-2097

 THIRD READING  

Bill No: SB 1292

Author: Hueso (D)

Amended: 5/25/18

Vote: 21

SENATE HEALTH COMMITTEE: 9-0, 4/18/18

AYES: Hernandez, Nguyen, Leyva, Mitchell, Monning, Newman, Nielsen, Pan, Roth

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/25/18

AYES: Lara, Bates, Beall, Bradford, Hill, Nielsen, Wiener

SUBJECT: Alzheimer’s disease

SOURCE: Alzheimer’s Association

Latino Coalition for a Healthy California

DIGEST:

This bill requires the California Alzheimer’s Disease Centers (CADC) to at least once annually, collaborate to collect the best practices regarding targeted outreach to underrepresented communities for the purposes of expanding community education and increasing participation in clinical trials regarding Alzheimer’s disease; requires the CADCs to produce statewide educational resources describing the important role of research and outlining opportunities for participation translated in Spanish, Chinese, and Tagalog; and, requires up to $50,000 annually of the funds allocated under the California Alzheimer’s Disease and Related Disorders Research Fund to promote targeted outreach to underrepresented communities.

ANALYSIS:

Existing law:

1. Establishes the Department of Public Health (DPH) in the California Health and Human Services Agency (CHHS). [GOV §12803]
2. Establishes the Alzheimer’s Disease and Related Disorders Advisory Committee within DPH. [HSC §1568.15 - 1568.17]
3. Encourages the establishment of CADCs, which are geographically dispersed diagnostic and treatment centers for Alzheimer’s disease within every postsecondary higher educational institution with a medical center, to encourage research to discover the cause of, and a cure for, Alzheimer’s disease. [HSC §125275]
4. Requires the functions of the CADCs to be designed to serve all of the following purposes:
   • 1. To provide diagnostic and treatment services and improve the quality of care to victims of Alzheimer’s disease;
     2. To increase research by faculty and students in discovering the cause of, and a cure for, Alzheimer’s disease;
     3. To provide training, monitoring, consultation, and continuing education to the families of those who are affected by Alzheimer’s disease;
     4. To increase the training of health care professionals with respect to Alzheimer’s disease and other acquired brain impairments to the extent that the centers have the requisite expertise; and,
     5. Authorizes the CADCs to collaborate with the Caregiver Resource Centers for Cognitively Impaired Adults, as specified. [HSC §125275]
5. Requires DPH to establish an Office of Health Equity for the purposes of aligning state resources, decision making, and programs to accomplish all of the following:
6. Achieve the highest level of health and mental health for all people, with special attention focused on those who have experienced socioeconomic disadvantage and historical injustice, including, but not limited to, vulnerable communities and culturally, linguistically, and geographically isolated communities;
7. Work collaboratively with the Health in All Policies Task Force to promote work to prevent injury and illness through improved social and environmental factors that promote health and mental health;
8. Advise and assist other state departments in their mission to increase access to, and the quality of, culturally and linguistically competent health and mental health care and services; and,
9. Improve the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities. [HSC §131019.5]
10. Requires state agencies, and expresses intent that the University of California, include, in appropriate periodic progress reports required under existing law, data on the extent to which state funds administered by those agencies and the University of California, or both, are used by grantees to support research on diseases, disorders, and health conditions that includes women and minorities in research trials, and that studies diseases, disorders, and health conditions of particular concern to women and minorities. States intent that the research includes Alzheimer’s disease as well as other diagnoses. [HSC §100239]

This bill:

1. Requires the CADCs to, at least once annually, collaborate to collect the best practices regarding targeted outreach to underrepresented communities for the purposes of expanding community education and increasing participation in clinical trials regarding Alzheimer’s disease.
2. Requires the CADCs to produce statewide educational resources describing the important role of research and outlining opportunities for participation. Requires the materials to be available to consumers, patients, family caregivers, health professionals, and community members in Spanish, Chinese, and Tagalog.
3. Requires at least one member of the Office of Health Equity’s advisory committee to have a background in Alzheimer’s disease and aging.
4. Requires up to $50,000 annually of the funds allocated to the Secretary of CHHS from the California Alzheimer’s Disease and Related Disorders Research Fund to promote targeted outreach to underrepresented communities for the purposes of expanding community education and increasing participation in clinical trials regarding Alzheimer’s disease, as determined by the Secretary.

Comments

1. Author’s statement. According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer’s disease on underrepresented communities including African-Americans, Latinos, and women. According to a recent national study, African-Americans are about two times more likely than white Americans to have Alzheimer’s and other dementias, and Latinos are 1.5 times more likely to have Alzheimer’s. When-and if-diagnosed, African-Americans and Latinos are notified in the later stages of the disease. As a result, African-Americans and Latinos diagnosed with Alzheimer’s use substantially more hospital, physician, and home health services – and incur substantially higher costs for those services – than white counterparts. The number of African-Americans and Latinos living with Alzheimer’s is expected to increase significantly by 2025, placing unprecedented demands on our healthcare system. Further, by 2030, the number of African-Americans with Alzheimer’s disease is expected to more than double from 2.7 million to 6.9 million. Respectively, the number of Latinos with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender, and caregiver statistics and address modifiable risk factors.
2. Alzheimer’s disease program. The Alzheimer's Disease Program (Program) was established to meet the legislative mandates of relieving the human burden and economic cost of Alzheimer's disease and related dementias, and to assist in ultimately discovering the cause and treatment of these diseases. The Program administers a statewide network of 10 CADCs at university medical centers. CADCs are located at: UC Davis (Sacramento and Walnut Creek sites), UCLA, USC (Los Angeles and Rancho Los Amigos sites), UCSF (San Francisco and Fresno sites), Stanford University, UC Irvine, and UC San Diego. These centers are dedicated to improving the quality of life of persons affected with Alzheimer's disease and their families by providing diagnostic and treatment services; professional training for medical residents, postdoctoral fellows, nurses, interns, and medical students; and community education such as caregiver training and support. The Program also administers the Alzheimer's Disease Research Fund, which awards grants through a competitive process to scientists in California engaged in the study of Alzheimer's disease and related disorders. Key partners include: California Department of Aging, Alzheimer's Association, California Health and Human Services Alzheimer's Disease and Related Disorders Advisory Committee, Caregiver Resources Centers, and Area Agencies on Aging. The research program is solely dependent on donations from California taxpayers on their State income tax forms.
3. 2017 Guideline for Alzheimer’s disease management. The 2017 Guideline is a required legislative report that includes an overview of the workgroup meetings that were held and recommendations from the working group that developed the Guideline. The 2017 Guideline aligns with SB 613 (Allen, Chapter 577, Statutes of 2015) and is designed to improve Alzheimer’s disease management. The Guideline assists primary care physicians with Alzheimer’s disease patients under their care, and offers resources for other forms of dementia including mild cognitive impairment. The 2017 Guideline report concludes that it is vital that California maintain and build upon its accomplishments by supporting this valuable and unique network of CADCs. Additionally, the Guideline concludes that it is important to incorporate public health approaches to prepare for significant growth in Alzheimer’s disease. The Guideline states that expanding upon existing resources, such as the data collected by the Program, can further assist in program refinement, grant submissions and implementation of the California’s Alzheimer’s Disease State Plan. According to the Guideline, the Program aims to set the stage for action and inclusiveness, and help improve delivery and efficacy of treatment through informing caregivers about how to seek optimal care, while expanding education and community outreach to underserved communities. The Program will continue to develop and provide culturally sensitive diagnostic tools to meet the needs of California's diverse seniors, in collaboration with stakeholders.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: No

According to the Senate Appropriations Committee, DPH may need personnel to conduct a study to determine the Alzheimer’s disease burden. Possible costs of $137,454 (special fund) in 2018-19 for:

• (0.8) Health Program Specialist II, ongoing, and
• One (1.0) FTE of an Associate Governmental Program Analyst ongoing.

SUPPORT: (Verified 5/22/18)

Alzheimer’s Association (co-source)

Latino Coalition for a Healthy California (co-source)

California Pan-Ethnic Health Network

California Rural Legal Assistance Foundation

Mi Familia Vota

Services, Immigrant Rights, and Education Network

Street Level Health Project

OPPOSITION: (Verified 5/22/18)

None received

ARGUMENTS IN SUPPORT: The Alzheimer’s Association writes that this bill expands research to better understand the disproportionate burden and economic costs of Alzheimer’s disease on underrepresented communities. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender and caregiver statistics and address modifiable risk factors. Importantly, this bill addressed the need for research and data collection to improve the human burden and economic toll of Alzheimer’s disease. The California Pan-Ethnic Health Network writes that the number of African-Americans with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million by 2030. California is uniquely positioned to combat this inequity with increased data collection, research participation and surveillance within its diverse communities.

Prepared by:

5/29/18 11:40:43

**** END ****

SENATE COMMITTEE ON

Senator Ricardo Lara, Chair

2017 - 2018 Regular Session

SB 1292 (Hueso) - Alzheimer’s disease

Bill Summary:

Senate Bill 1292 requires the Department of Public Health (CDPH) to implement a public outreach program at all California Alzheimer’s Disease Centers to educate the public on the availability, purpose, and value of research and clinical trials related to Alzheimer’s disease.

The bill requires the department’s Office of Health Equity (OHE) to conduct a study to determine the burden and economic cost of Alzheimer’s disease in California on African Americans, Latinos, and women, and to submit a report to the Legislature, by January 1, 2020, summarizing the study’s findings.

*********** ANALYSIS ADDENDUM – SUSPENSE FILE ***********

The following information is revised to reflect amendments

adopted by the committee on May 25, 2018

Fiscal Impact:

Staff notes the CDPH may need personnel to conduct a study to determine the Alzheimer’s disease burden. Staff notes possible costs of $137,454 (special fund) in 2018-19 for:

• (0.8) Health Program Specialist II, ongoing, and
• One (1.0) FTE of an Associate Governmental Program Analyst ongoing.

Author Amendments:

The amendments remove the proposed requirement for CDPH to implement a public outreach program, as specified.

-- END --

SENATE COMMITTEE ON APPROPRIATIONS

Senator Ricardo Lara, Chair

2017 - 2018 Regular Session

SB 1292 (Hueso) - Alzheimer’s disease

This bill meets the criteria for referral to the Suspense File.

Bill Summary:

Senate Bill 1292 requires the Department of Public Health (CDPH) to implement a public outreach program at all California Alzheimer’s Disease Centers to educate the public on the availability, purpose, and value of research and clinical trials related to Alzheimer’s disease.

The bill requires the department’s Office of Health Equity (OHE) to conduct a study to determine the burden and economic cost of Alzheimer’s disease in California on African Americans, Latinos, and women, and to submit a report to the Legislature, by January 1, 2020, summarizing the study’s findings.

Fiscal Impact:

The CDPH notes costs of $746,563 in Fiscal Year (FY) 2018-19 and FY 2019-20, and $596,563 in FY 2020-21, and ongoing. Specifically:

• One (1.0) Full Time Equivalent (FTE) Health Program Specialist II ongoing
• One (1.0) FTE of an Associate Governmental Program Analyst ongoing, and
• (0.5) FTE of a Health Program Manager II ongoing, to create a public awareness campaign model.
• A public awareness campaign also requires materials, which range from $250,000 ongoing for promotional outreach to the public. There is no compensation for OHE’s advisory committee members; however, OHE does pay for travel-related expenses.  

Background:

• • 1. Current law establishes California Alzheimer’s Disease Centers (ADCs) to be geographically dispersed diagnostic and treatment centers for Alzheimer’s disease within every postsecondary higher educational institution with a medical center, to encourage research to discover the cause of, and a cure for, Alzheimer’s disease. The ADCs must, among other services, provide diagnostic and treatment services and improve quality of care, provide training and continuing education to families impacted by Alzheimer’s disease; and authorizes the CADCs to collaborate with the Caregiver Resource Centers for Cognitively Impaired Adults, as specified.

The Alzheimer’s Disease Program administers a statewide network of ten ADCs at university medical centers, which are located: UC Davis (Sacramento and Walnut Creek sites), UCLA, USC (Los Angeles and Rancho Los Amigos sites), UCSF (San Francisco and Fresno sites), Stanford University, UC Irvine, and UC San Diego. The Program also administers the Alzheimer's Disease Research Fund, which awards grants through a competitive process to scientists in California engaged in the study of Alzheimer's disease and related disorders.

A number of partners, including California Department of Aging, Alzheimer's Association, California Health and Human Services Alzheimer's Disease and Related Disorders Advisory Committee, Caregiver Resources Centers, and Area Agencies on Aging, work on Alzheimer’s related policies and issues.

The OHE is comprised of three units: Community Development and Engagement Unit, Policy Unit, and Health Research and Statistics Unit. OHE works with community-based organizations and local governmental agencies to ensure that community perspectives and input are included in policies and any strategic plans, recommendations, and implementation activities, as well as aligns decision making, and programs to advise and assist other state departments in their mission to increase access to, and the quality of, culturally and linguistically competent health and mental health care and services and to improve the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities.

Proposed Law:

Senate Bill 1292 requires the Department of Public Health (CDPH) to implement a public outreach program at all California Alzheimer’s Disease Centers to educate the public on the availability, purpose, and value of research and clinical trials related to Alzheimer’s disease.

The bill requires the department’s Office of Health Equity (OHE) to conduct a study to determine the burden and economic cost of Alzheimer’s disease in California on African Americans, Latinos, and women, and to submit a report to the Legislature, by January 1, 2020, summarizing the study’s findings.

Related Legislation:

• AB 614 (Limón) requires each Area Agency on Aging, in consultation with local organizations with expertise in Alzheimer’s care to develop an evidence-based or evidence-informed core training program relating to Alzheimer’s disease and dementia, and any additional training based on local needs only to the extent that funds are appropriated by the Legislature for that purpose.
• AB 1955 (Limón) requires the Department of Aging to implement a public awareness campaign of the warning signs of Alzheimer’s disease and dementia in order to promote early detection and accurate diagnosis.
• AB 2400 (Kalra) extends the sunset date for a voluntary contribution fund related to Alzheimer’s research and makes other changes to its structure and implementation.

Staff Comments:

Staff notes that CDPH is supportive of efforts to reduce the human burden and economic costs associated with Alzheimer’s, however, “without the addition of staff with the appropriate expertise, implementing the study would present a significant, unfunded cost to CDPH.” The department provided their estimate, based on similar health burden reports, such as the report commissioned by the Alzheimer’s Association in 2009 entitled, “Alzheimer’s disease facts and figures in California: Current status and future projections,” CDPH is requesting $300,000 in contractual costs for one year, as the report is due in one year.

Below is a breakout of the position and funding request:

• 0.5 FTE Health Program Manger II (0.5 FTE $75,455 ongoing) to manage, coordinate and evaluates the overall public awareness campaign model activities. Directs, and supervises the Health Program Specialist II and the Associate Governmental Program Analyst. Supervises and maintains budgets and fiscal control procedures. Provides direction for program design, implementation and evaluation.

• 1.0 FTE Health Program Specialist II (1.0 FTE $146,176 ongoing) to oversee the day-to-day management and operation of the public awareness campaign model including medium travel, dissemination strategy and planning and implementing a public awareness campaign.

• 1.0 FTE Associate Governmental Program Analyst (1.0 FTE $122,932 ongoing) would prepare contracts materials; provide administrative support to the Health Program Manager II and Health Program Specialist II, provide fiscal support services and technical assistance to the contractor; would serve as the contract manager, and handle any subcontracts and invoices, and other budget-related tasks.

• Burden report (Subcontract $300,000 ($150,000/YR for two years)) to oversee, document, research and determine the human burden and economic costs of Alzheimer’s disease in California on African-Americans, Latinos and women.

• Material costs ($250,000 and ongoing) which includes informational and promotional materials, training materials for orientation and educational purposes. Also includes, printing, production and publication costs. 

• Travel and per diem expenses for the OHE advisory committee member ($2000 and ongoing) which includes transportation, lodging, and meal reimbursement to attend quarterly advisory committee meetings.  

 The following table outlines the department’s anticipated costs to implement the bill:

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SENATE COMMITTEE ON HEALTH

Senator Ed Hernandez, O.D., Chair

BILL NO: SB 1292

SUBJECT: Alzheimer’s disease.

SUMMARY:

Requires the Department of Public Health to implement a public outreach program at all California Alzheimer’s Disease Centers to educate the public on the availability, purpose, and value of research and clinical trials related to Alzheimer’s disease, and requires the Office of Health Equity to conduct a study and submit a report to the Legislature by January 1, 2020, to determine the human burden and economic costs of Alzheimer’s disease in California on African Americans, Latinos, and women.

Existing law:

1. Establishes the Department of Public Health (DPH) in the California Health and Human Services Agency. [GC §12803]
   
2. Establishes the Alzheimer’s Disease and Related Disorders Advisory Committee within DPH. [HSC §1568.15 - 1568.17]
3. Encourages the establishment of California Alzheimer’s Disease Centers (CADCs), which are geographically dispersed diagnostic and treatment centers for Alzheimer’s disease within every postsecondary higher educational institution with a medical center, to encourage research to discover the cause of, and a cure for, Alzheimer’s disease. [HSC §125275]
4. Requires the functions of the CADCs to be designed to serve all of the following purposes:
   • 1. To provide diagnostic and treatment services and improve the quality of care to victims of Alzheimer’s disease;
     2. To increase research by faculty and students in discovering the cause of, and a cure for, Alzheimer’s disease;
     3. To provide training, monitoring, consultation, and continuing education to the families of those who are affected by Alzheimer’s disease;
     4. To increase the training of health care professionals with respect to Alzheimer’s disease and other acquired brain impairments to the extent that the centers have the requisite expertise; and,
     5. Authorizes the CADCs to collaborate with the Caregiver Resource Centers for Cognitively Impaired Adults, as specified. [HSC §125275]
        
5. Requires DPH to establish an Office of Health Equity for the purposes of aligning state resources, decision making, and programs to accomplish all of the following:
   • 1. Achieve the highest level of health and mental health for all people, with special attention focused on those who have experienced socioeconomic disadvantage and historical injustice, including, but not limited to, vulnerable communities and culturally, linguistically, and geographically isolated communities;
6. Work collaboratively with the Health in All Policies Task Force to promote work to prevent injury and illness through improved social and environmental factors that promote health and mental health;
7. Advise and assist other state departments in their mission to increase access to, and the quality of, culturally and linguistically competent health and mental health care and services; and,
8. Improve the health status of all populations and places, with a priority on eliminating health and mental health disparities and inequities. [HSC §131019.5]
9. Requires state agencies, and expresses intent that the University of California, include, in appropriate periodic progress reports required under existing law, data on the extent to which state funds administered by those agencies and the University of California, or both, are used by grantees to support research on diseases, disorders, and health conditions that includes women and minorities in research trials, and that studies diseases, disorders, and health conditions of particular concern to women and minorities. States intent that the research includes Alzheimer’s disease as well as other diagnoses. [HSC §100239]

This bill:

1. Requires DPH to implement a public outreach program at all CADCs to educate the public on the availability, purpose, and value of research and clinical trials related to Alzheimer’s disease, with the goal to increase public awareness and participation in research and clinical trials related to Alzheimer’s disease, particularly among individuals from traditionally underrepresented groups.
   
2. Requires the Office of Health Equity to conduct a study to determine the human burden and economic costs of Alzheimer’s disease in California on African Americans, Latinos, and women.
   
3. Requires the study to examine county disease prevalence data statistics, analyze demographic trends, evaluate ethnicity, gender, and caregiver statistics, and address modifiable risk factors.
   
4. Requires the office to submit a report to the Legislature on or before January 1, 2020, summarizing the findings of the study.
   
5. Sunsets 1) through 4) above on January 1, 2024.
   
6. Requires at least one member of the Office of Health Equity’s advisory committee to have a background in Alzheimer’s disease and aging.
   

FISCAL EFFECT:

This bill has not been analyzed by a fiscal committee.

COMMENTS:

1. Author’s statement. According to the author, this bill expands research to better understand the disproportionate burden and economic cost of Alzheimer’s disease on underrepresented communities including African-Americans, Latinos, and women. According to a recent national study, African-Americans are about two times more likely than white Americans to have Alzheimer’s and other dementias, and Latinos are 1.5 times more likely to have Alzheimer’s. When-and if-diagnosed, African-Americans and Latinos are notified in the later stages of the disease. As a result, African-Americans and Latinos diagnosed with Alzheimer’s use substantially more hospital, physician, and home health services – and incur substantially higher costs for those services – than white counterparts. The number of African-Americans and Latinos living with Alzheimer’s is expected to increase significantly by 2025, placing unprecedented demands on our healthcare system. Further, by 2030, the number of African-Americans with Alzheimer’s disease is expected to more than double from 2.7 million to 6.9 million. Respectively, the number of Latinos with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender, and caregiver statistics and address modifiable risk factors.
2. Alzheimer’s disease program. The Alzheimer's Disease Program (Program) was established to meet the legislative mandates of relieving the human burden and economic cost of Alzheimer's disease and related dementias, and to assist in ultimately discovering the cause and treatment of these diseases. Tthe Program administers a statewide network of ten CADCs at university medical centers. CADCs are located at: UC Davis (Sacramento and Walnut Creek sites), UCLA, USC (Los Angeles and Rancho Los Amigos sites), UCSF (San Francisco and Fresno sites), Stanford University, UC Irvine, and UC San Diego. These centers are dedicated to improving the quality of life of persons affected with Alzheimer's disease and their families by providing diagnostic and treatment services; professional training for medical residents, postdoctoral fellows, nurses, interns, and medical students; and community education such as caregiver training and support. The Program also administers the Alzheimer's Disease Research Fund, which awards grants through a competitive process to scientists in California engaged in the study of Alzheimer's disease and related disorders. Key partners include: California Department of Aging, Alzheimer's Association, California Health and Human Services Alzheimer's Disease and Related Disorders Advisory Committee, Caregiver Resources Centers, and Area Agencies on Aging. The research program is solely dependent on donations from California taxpayers on their State income tax forms.
3. 2017 Guideline for Alzheimer’s disease management. The 2017 Guideline is a required legislative report that includes an overview of the workgroup meetings that were held and recommendations from the working group that developed the Guideline. The 2017 Guideline aligns with SB 613 (Allen, Chapter 577, Statutes of 2015) and is designed to improve Alzheimer’s disease management. The Guideline assists primary care physicians with Alzheimer’s disease patients under their care, and offers resources for other forms of dementia including mild cognitive impairment. The 2017 Guideline report concludes that it is vital that California maintain and build upon its accomplishments by supporting this valuable and unique network of CADCs. Additionally, the Guideline concludes that it is important to incorporate public health approaches to prepare for significant growth in Alzheimer’s disease. The Guideline states that expanding upon existing resources, such as the data collected by the Program, can further assist in program refinement, grant submissions and implementation of the California’s Alzheimer’s Disease State Plan. According to the Guideline, the Program aims to set the stage for action and inclusiveness, and help improve delivery and efficacy of treatment through informing caregivers about how to seek optimal care, while expanding education and community outreach to underserved communities. The Program will continue to develop and provide culturally sensitive diagnostic tools to meet the needs of California's diverse seniors, in collaboration with stakeholders.
   
4. Related legislation. AB 614 (Limón) requires each Area Agency on Aging, in consultation with local organizations with expertise in Alzheimer’s care to develop an evidence-based or evidence-informed core training program relating to Alzheimer’s disease and dementia, and any additional training based on local needs only to the extent that funds are appropriated by the Legislature for that purpose. AB 614 was held on the Senate Appropriations Committee suspense file.

AB 1955 (Limón) requires the Department of Aging to implement a public awareness campaign of the warning signs of Alzheimer’s disease and dementia in order to promote early detection and accurate diagnosis. AB 1955 is pending in the Assembly Aging and Long-term Care Committee.

AB 2400 (Kalra) extends the sunset date for a voluntary contribution fund related to Alzheimer’s research and makes other changes to its structure and implementation. AB 2400 is pending on the Assembly Floor.

1. Prior legislation. SB 449 (Monning, Chapter 282, Statutes of 2017) requires at least two of the 60 hours of classroom training that is required as part of the training program for certified nurse assistants to address the special needs of persons with Alzheimer’s disease and related dementias.
   
   AB 1200 (Cervantes, Chapter 618, Statutes of 2017) establishes an Aging and Disability Resource Center program to provide information to consumers and their families on available long-term services and supports (LTSS) programs, and to assist older adults, caregivers, and persons with disabilities in accessing LTSS programs at the local level.

SB 97 (Committee on Budget, Chapter 11, Statutes of 2015) among many other provisions requires appropriations for funding for the Alzheimer’s Research Centers to be used for direct services, including, but not limited to, diagnostic screening, case management, disease management, support for caregivers, and related services necessary for positive client outcomes.

SB 613 (Allen, Chapter 577, Statutes of 2015) requires DPH to convene a multidisciplinary workgroup to update the 2008 Guideline for Alzheimer’s Disease Management in California, and to submit a report from the workgroup to the Legislature, on or before March 1, 2017. Additionally, SB 613 permits the workgroup to draw on evidence-based, peer reviewed research and lessons learned from demonstration and pilot projects in updating the Guideline. The updated Guideline was approved by California Health and Human Services Agency on March 15, 2017.

1. Support. The Alzheimer’s Association writes that this bill expands research to better understand the disproportionate burden and economic costs of Alzheimer’s disease on underrepresented communities. There is an immediate need for research and data collection to analyze these demographic trends, evaluate ethnicity, gender and caregiver statistics and address modifiable risk factors. Importantly, this bill addressed the need for research and data collection to improve the human burden and economic toll of Alzheimer’s disease. The California Pan-Ethnic Health Network writes that the number of African-Americans with Alzheimer’s disease is expected to increase more than nine fold, from 379,000 in 2012 to 1.1 million by 2030. California is uniquely positioned to combat this inequity with increased data collection, research participation and surveillance within its diverse communities.

SUPPORT AND OPPOSITION:

Support: Alzheimer’s Association (cosponsor)

Latino Coalition for a Healthy California (cosponsor)

California Pan-Ethnic Health Network

California Rural Legal Assistance Foundation

Mi Familia Vota

Services, Immigrant Rights, and Education Network

Street Level Health Project

Oppose: None received

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