Existing law requires all health care providers and laboratories to report cases of human immunodeficiency virus (HIV) infection to the local health officer and requires the local health officer to report unduplicated HIV cases to the State Department of Public Health. Existing law requires state and local health department employees and contractors to sign confidentiality agreements prior to accessing confidential HIV-related public health records. Existing law requires the department or appropriate local health department to annually review the agreements.

This bill would require employees and contractors to annually sign the agreement and would repeal the annual review of the agreements. By increasing obligations on local health departments to annually obtain signed agreements, this bill would impose a state-mandated local program.

Existing law requires public health records related to HIV or acquired immunodeficiency syndrome (AIDS), containing personally identifying information, that were developed or acquired by a state or local public health agency, or an agent of that agency, to be confidential and not disclosed, except as otherwise provided by law for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by their guardian or conservator. Existing law authorizes certain state or local public health officials to disclose those records to other local, state, or federal public health agencies or to medical researchers when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease.

This bill would additionally authorize disclosure when the confidential information is necessary for the coordination of, linkage to, or reengagement in care for a person.

Existing law authorizes local public health agency staff to disclose information to state and federal public health agency staff for purposes of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of persons coinfected with HIV and specified transmittable diseases.

This bill would repeal that authority.

This bill would make legislative findings and declarations as to the benefits of HIV-related data sharing and would state the intent of the Legislature to enhance these data sharing practices.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law requires all health care providers and laboratories to report cases of human immunodeficiency virus (HIV) infection to the local health officer and requires the local health officer to report unduplicated HIV cases to the State Department of Public Health. Existing law requires state and local health department employees and contractors to sign confidentiality agreements prior to accessing confidential HIV-related public health records. Existing law requires the department or appropriate local health department to annually review the agreements.

This bill would require employees and contractors to annually sign the agreement and would repeal the annual review of the agreements. By increasing obligations on local health departments to annually obtain signed agreements, this bill would impose a state-mandated local program.

Existing law requires public health records related to HIV or acquired immunodeficiency syndrome (AIDS), containing personally identifying information, that were developed or acquired by a state or local public health agency, or an agent of that agency, to be confidential and not disclosed, except as otherwise provided by law for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by their guardian or conservator. Existing law authorizes certain state or local public health officials to disclose those records to other local, state, or federal public health agencies or to medical researchers when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease.

This bill would additionally authorize disclosure when the confidential information is necessary for the coordination of, linkage to, or reengagement in care for a person.

Existing law authorizes local public health agency staff to disclose information to state and federal public health agency staff for purposes of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of persons coinfected with HIV and specified transmittable diseases.

This bill would repeal that authority.

This bill would make legislative findings and declarations as to the benefits of HIV-related data sharing and would state the intent of the Legislature to enhance these data sharing practices.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law requires all health care providers and laboratories to report cases of human immunodeficiency virus (HIV) infection to the local health officer and requires the local health officer to report unduplicated HIV cases to the State Department of Public Health. Existing law requires state and local health department employees and contractors to sign confidentiality agreements prior to accessing confidential HIV-related public health records. Existing law requires the department or appropriate local health department to annually review the agreements.

This bill would require employees and contractors to annually sign the agreement and would repeal the annual review of the agreements. By increasing obligations on local health departments to annually obtain signed agreements, this bill would impose a state-mandated local program.

Existing law requires public health records related to HIV or acquired immunodeficiency syndrome (AIDS), containing personally identifying information, that were developed or acquired by a state or local public health agency, or an agent of that agency, to be confidential and not disclosed, except as otherwise provided by law for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by their guardian or conservator. Existing law authorizes certain state or local public health officials to disclose those records to other local, state, or federal public health agencies or to medical researchers when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease.

This bill would additionally authorize disclosure when the confidential information is necessary for the coordination of, linkage to, or reengagement in care for the a person.

Existing law authorizes local public health agency staff to disclose information to state and federal public health agency staff for purposes of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of persons coinfected with HIV and specified transmittable diseases.

This bill would repeal that authority.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law requires all health care providers and laboratories to report cases of human immunodeficiency virus (HIV) infection to the local health officer and requires the local health officer to report unduplicated HIV cases to the State Department of Public Health. Existing law requires state and local health department employees and contractors to sign confidentiality agreements prior to accessing confidential HIV-related public health records. Existing law requires the department or appropriate local health department to annually review the agreements.

This bill would require employees and contractors to annually sign the agreement and would repeal the annual review of the agreements. By increasing obligations on local health departments to annually obtain signed agreements, this bill would impose a state-mandated local program.

Existing law requires public health records related to HIV or acquired immunodeficiency syndrome (AIDS), containing personally identifying information, that were developed or acquired by a state or local public health agency, or an agent of that agency, to be confidential and not disclosed, except as otherwise provided by law for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by their guardian or conservator. Existing law authorizes certain state or local public health officials to disclose those records to other local, state, or federal public health agencies or to medical researchers when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease.

This bill would additionally authorize disclosure when the confidential information is necessary for the coordination of, linkage to, or reengagement in care for the person.

Existing law authorizes local public health agency staff to disclose information to state and federal public health agency staff for purposes of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of persons coinfected with HIV and specified transmittable diseases.

This bill would repeal that authority.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

 UNFINISHED BUSINESS  

Bill No: SB 1333

Author: Eggman (D) and Roth (D)

Amended: 6/4/24

Vote: 21

SENATE HEALTH COMMITTEE: 11-0, 3/20/24

AYES: Roth, Nguyen, Glazer, Gonzalez, Grove, Hurtado, Limón, Menjivar, Rubio, Smallwood-Cuevas, Wiener

SENATE JUDICIARY COMMITTEE: 11-0, 4/9/24

AYES: Umberg, Wilk, Allen, Ashby, Caballero, Durazo, Laird, Min, Niello, Stern, Wahab

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/16/24

AYES: Caballero, Jones, Ashby, Becker, Bradford, Seyarto, Wahab

SENATE FLOOR: 37-0, 5/23/24

AYES: Alvarado-Gil, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Eggman, Glazer, Gonzalez, Grove, Hurtado, Jones, Laird, Limón, McGuire, Menjivar, Min, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

NO VOTE RECORDED: Allen, Archuleta, Newman

ASSEMBLY FLOOR: 62-0, 8/22/24 - See last page for vote

SUBJECT: Communicable diseases: HIV reporting

SOURCE: APLA Health

Equality California

LGBTQ Legislative Caucus

San Francisco AIDS Foundation

DIGEST:

This bill revises and recasts existing law to permit the California Department of Public Health (CDPH) and local health departments (LHDs) to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD.

Assembly Amendments

add legislative findings and declarations and state the intent of the Legislature to enhance data sharing practices concerning people living with HIV, while continuing to prioritize privacy and safety measures to ensure responsible dissemination of sensitive health data and coordination of, linkage to, or reengagement in care.

ANALYSIS:

Existing law:

1. Requires CDPH to establish a list of diseases and conditions to be reported by local health officers (LHOs) to CDPH. Requires CDPH to specify the timeliness requirements related to the reporting of each disease and condition, and the mechanisms required for, and the content to be included in, reports made. Permits the list to include both communicable and non-communicable diseases. Permits the list to be modified at any time by CDPH, after consultation with the California Conference of Local Health Officers. [Health and Safety Code (HSC) §120130]
2. Requires health care providers and laboratories to report cases of HIV infection to the LHO using patient names on a form developed by CDPH. Requires CDPH and LHD employees and contractors to sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records. Requires those agreements to be reviewed annually by either CDPH or the appropriate LHD. [HSC §121022]
3. Prohibits public health records relating to HIV/AIDS containing personally identifying information from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by the person’s guardian or conservator. Permits CDPH or an LHD, or their agent, to disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by CDPH or an LHD. [HSC §121025]
4. Permits the following disclosures for the purpose of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with certain diseases:
   1. LHD HIV surveillance staff may disclose the information to the health care provider who provides HIV care to the HIV-positive person who is the subject of the record;
   2. LHD tuberculosis control staff may disclose the information to CDPH tuberculosis control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent the information is requested by the CDC and permitted for purposes of the investigation, control, or surveillance of HIV and tuberculosis coinfections;
   3. LHD sexually transmitted disease (STD) control staff may disclose the information to CDPH STD control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent it is requested for the purposes of the investigation, control, or surveillance of HIV and syphilis, gonorrhea, or chlamydia coinfection; and,
   4. For purposes of the investigation, control, or surveillance of HIV and its coinfection with hepatitis B, hepatitis C, and meningococcal infection, LHD communicable disease staff may disclose the information to CDPH staff, who may further disclose the information, without disclosing patient identifying information, to the CDC to the extent the information is requested. [HSC §121025 (c)(1)]
5. Permits certain LHD staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, to further disclose the information to CDPH or LHD STD, communicable disease control, and tuberculosis control staff; the HIV-positive person who is the subject of the record; or, the health care provider who provides their HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care. [HSC §121025 (c)(3)]

This bill:

1. Permits CDPH and LHDs to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD. Permits LHD HIV surveillance staff to disclose the information to a health care provider who provides care to the HIV-positive person who is the subject of the record.
2. Deletes existing law [in 4) b)-d) above] which only permits disclosure of HIV/AIDS public health records for the purpose of enhancing the completeness of reporting to the CDC of HIV/AIDS and coinfection with certain diseases.
3. Deletes existing law which permits disclosure of public health records only for the purpose of facilitating care for persons coinfected with HIV and specified reportable diseases, and instead permits the disclosure of that information for facilitating appropriate case management or care coordination or delivery of medical care and treatment of persons coinfected with HIV and any reportable disease.
4. Requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once. Deletes the requirement that CDPH and LHDs review the agreements annually.
5. Makes other technical, clarifying changes.

Comments

1. Author’s statement. According to the author, California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, mpox, or Shigella, is not allowed. During the 2022 mpox outbreak, CDPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment risking more severe infections. Not being able to record an mpox case’s HIV status in the secure and confidential data systems for mpox investigations meant that LHDs were also unable to determine whether people diagnosed with mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage mpox cases and delivery of timely, client-centered mpox services for the people at highest risk of mpox complications. This bill will improve California’s ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.
2. Background. According CDPH, the prevalence of diagnosed HIV infection was 355.6 per 100,000 population in 2022, compared to 343.1 per 100,000 in 2018 – an increase of 3.7%. Of the 142,772 people living with diagnosed HIV infection in 2022, 73.7% were in HIV care and 64.7% achieved viral suppression. Among all racial/ethnic groups, African Americans are the most disproportionately affected by HIV. While Latinx and white individuals make up the largest percentage of persons living with diagnosed HIV, the rate of HIV among African Americans is substantially higher (1,012.3 per 100,000 population, versus 319.5 per 100,000 among whites and 364.8 per 100,000 among Latinx). The rate of new HIV diagnoses among African Americans is 4.4 times higher than whites among men and 5.7 times higher among women. Latinx are also disproportionately affected by HIV with rates of new HIV diagnoses 2.7 times higher than white among men and 1.6 times higher among women. Most of California’s living HIV cases are attributed to male-to-male sexual transmission (66.3%; 8.2% of living cases are attributable to high-risk heterosexual contact; 6% to men who have sex with men who also inject drugs; 5.3% to injection drug use; 1.9% to transgender sexual contact; 0.5% to perinatal exposure and 11.9% to other or unknown sources including other heterosexual contact.
3. HIV/mpox coinfection. According to CDPH, the recent mpox outbreak disproportionately affected people with HIV. The CDC estimates 38% of mpox infections nationally from May through July 2022 were among people with HIV. According to CDC, people with HIV, particularly people whose HIV is not virally suppressed, are more likely to be hospitalized and can be at the highest risk of severe mpox infection and death if they are infected with mpox compared with people who are infected with mpox who do not have HIV. Through March 2024, 40.2% of mpox infections in California have occurred in people with HIV. All three of the mpox deaths in California during the recent outbreak were among people with advanced AIDS. People with advanced HIV are most likely to experience severe manifestations of their mpox infection; these are also the patients about whom CDPH was most often consulted on at the height of the mpox outbreak in 2022. People with HIV whose viral load is not fully suppressed have a greater clinical need both for mpox vaccination and for mpox treatment due to increased risk for severe disease and death. CDC recommends considering administration of mpox treatment for people with HIV who are not virally suppressed, and knowing this information is critical to facilitate prompt treatment which can prevent severe health outcomes of HIV/mpox coinfection, including death.

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

According to the Assembly Appropriations Committee, no costs to CDPH. According to the County Health Executives Association of California and the Health Officers Association of California, minor and absorbable costs to local health departments.

SUPPORT: (Verified 8/22/24)

APLA Health (co-source)

Equality California (co-source)

California LGBTQ Legislative Caucus (co-source)

San Francisco AIDS Foundation (co-source)

Amador County Arts Council

Asian Americans Advancing Justice Southern California

Bienestar Human Services

California Democratic Party

California LGBTQ Health and Human Services Network

California Medical Association

California Transcends

Christie’s Place

County Health Executives Association of California

County of Los Angeles

Courage California

El/La Para Translatinas

End the Epidemics

GLIDE

Health Officers Association of California

Los Angeles LGBT Center

National Asian Pacific American Families Against Substance Abuse

National Center for Lesbian Rights

Parivar Bay Area

Pomona Valley Pride

PRC

Pride Panthers Coalition, Inc.

Radiant Health Centers

San Francisco Community Health Center

San Francisco Department of Public Health

San Joaquin Pride Center

Somos Familia Valle

Stanford Healthcare

The Pride Panthers Coalition, Inc.

The San Diego LGBT Community Center

The Source LGBT+ Center

Transfamily Support Services

Transyouth Liberation

One individual

OPPOSITION: (Verified 8/22/24)

None received

ARGUMENTS IN SUPPORT: Supporters write that this bill will allow confidential HIV reporting and data sharing between public health officials and health care providers for all reportable communicable diseases to promote the health and wellbeing of people with HIV, without needing to amend California law for each new or existing reportable infection. Expanding the sharing of HIV data for all reportable communicable diseases will allow CDPH to respond quickly to an emerging disease affecting people with HIV, including during a public health emergency, and promote improved health outcomes for people with HIV. This bill will improve care coordination for people with HIV who are coinfected with another disease by allowing confidential data sharing between state and local public health officials and health care providers. Strong federal and state privacy laws will remain in place to protect the confidentiality and privacy rights of patients while better addressing the health needs of people with HIV.

ASSEMBLY FLOOR: 62-0, 8/22/24

AYES: Alanis, Alvarez, Arambula, Bains, Bennett, Berman, Boerner, Bryan, Juan Carrillo, Wendy Carrillo, Chen, Connolly, Megan Dahle, Davies, Dixon, Essayli, Flora, Friedman, Gabriel, Gallagher, Garcia, Gipson, Grayson, Hart, Hoover, Jackson, Jones-Sawyer, Kalra, Lackey, Lee, Lowenthal, Maienschein, Mathis, McCarty, Muratsuchi, Stephanie Nguyen, Pacheco, Papan, Jim Patterson, Joe Patterson, Pellerin, Quirk-Silva, Ramos, Rendon, Reyes, Luz Rivas, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Wood, Zbur, Robert Rivas

NO VOTE RECORDED: Addis, Aguiar-Curry, Bauer-Kahan, Bonta, Calderon, Cervantes, Mike Fong, Haney, Holden, Irwin, Low, McKinnor, Ortega, Petrie-Norris, Weber, Wicks, Wilson

Prepared by: Melanie Moreno / HEALTH / (916) 651-4111

8/22/24 16:10:51

**** END ****

SENATE THIRD READING

STR Bill Id:SB 1333

Author:(Eggman and Roth)

As Amended Ver:June 4, 2024

Majority vote

SUMMARY

Revises and recasts existing law to permit the Department of Public Health (DPH) and local health departments (LHDs) to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by DPH or a LHD.

Major Provisions

COMMENTS

1. Prevalence of diagnosed human immunodeficiency virus (HIV) infection in California. According DPH, the prevalence of diagnosed HIV infection was 355.6 per 100,000 population in 2022, compared to 343.1 per 100,000 in 2018 – an increase of 3.7%. Of the 142,772 people living with diagnosed HIV infection in 2022, 73.7% were in HIV care and 64.7% achieved viral suppression. Among all racial/ethnic groups, African Americans are the most disproportionately affected by HIV. While Latinx and white individuals make up the largest percentage of persons living with diagnosed HIV, the rate of HIV among African Americans is substantially higher (1,012.3 per 100,000 population, versus 319.5 per 100,000 among whites and 364.8 per 100,000 among Latinx). The rate of new HIV diagnoses among African Americans is 4.4 times higher than whites among men and 5.7 times higher among women. Latinx are also disproportionately affected by HIV with rates of new HIV diagnoses 2.7 times higher than white among men and 1.6 times higher among women. Most of California's living HIV cases are attributed to male-to-male sexual transmission (66.3%; 8.2% of living cases are attributable to high-risk heterosexual contact; 6% to men who have sex with men who also inject drugs; 5.3% to injection drug use; 1.9% to transgender sexual contact; 0.5% to perinatal exposure and 11.9% to other or unknown sources including other heterosexual contact).
2. HIV/Mpox coinfection. According to DPH, the recent Mpox outbreak disproportionately affected people with HIV. The federal Centers for Disease Control and Prevention (CDC) estimates 38% of Mpox infections nationally from May through July 2022 were among people with HIV. According to the CDC, people with HIV, particularly people whose HIV is not virally suppressed, are more likely to be hospitalized and can be at the highest risk of severe Mpox infection and death if they are infected with Mpox compared with people who are infected with Mpox who do not have HIV. Through March 2024, 40.2% of Mpox infections in California have occurred in people with HIV. All three of the Mpox deaths in California during the recent outbreak were among people with advanced AIDS. People with advanced HIV are most likely to experience severe manifestations of their Mpox infection; these are also the patients about whom DPH was most often consulted on at the height of the Mpox outbreak in 2022. People with HIV whose viral load is not fully suppressed have a greater clinical need both for Mpox vaccination and for Mpox treatment due to increased risk for severe disease and death. CDC recommends considering administration of Mpox treatment for people with HIV who are not virally suppressed, and knowing this information is critical to facilitate prompt treatment which can prevent severe health outcomes of HIV/Mpox coinfection, including death.
3. Impact of statutory limitations on Public Health's response to the Mpox outbreak in California. DPH indicates that because Mpox is not included on the list of conditions under existing law that can be cross referenced with HIV data in the state's electronic surveillance system, public health officials were unable to document and understand whether people with Mpox were infected with HIV in our surveillance systems. This delayed public health's ability to understand that this population, which we now know is at greater risk of severe complications and death, was adversely impacted by Mpox and consequently delayed DPH's ability to develop the specific guidance and outreach that would have more promptly enabled local public health and clinical partners to prevent severe Mpox disease in this population. DPH indicates that not being able to record an Mpox case's HIV status in the secure and confidential data systems used by nearly all local health jurisdictions in California (California Reportable Disease Information Exchange and CalCONNECT) for Mpox investigations meant LHDs are unable to determine whether people diagnosed with Mpox also needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. DPH further indicates that existing law limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage Mpox cases and delivery of timely, client-centered Mpox services for the people at highest risk of Mpox complications. Knowing an individual's HIV status is critical to timely and comprehensive Mpox case investigation, including to identify priority cases for follow up and to guide their care and facilitate prompt treatment. People with HIV whose viral load is not fully suppressed have a greater clinical need both for Mpox vaccination and treatment due to increased risk for severe disease and death. DPH indicates that due to statutory limitations DPH was not able to use all of the data that could have been available to make public health decisions.

This bill allows confidential HIV reporting and data sharing for all reportable communicable diseases between public health officials and health care providers in order to facilitate the care of patients with HIV.

According to the Author

California law only allows state and local public health personnel to communicate with each other or with health care providers about a person's HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, monkeypox (Mpox), or Shigella, is not allowed. The author continues that during the 2022 Mpox outbreak, DPH could not disclose a patient's HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex Mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment, risking more severe infections. Not being able to record an Mpox case's HIV status in the secure and confidential data systems for Mpox investigations meant that LHDs were also unable to determine whether people diagnosed with Mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. The author contends that California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage Mpox cases and delivery of timely, client-centered Mpox services for the people at highest risk of Mpox complications. The author concludes that this bill will improve California's ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.

Arguments in Support

According to APLA Health, Equality California, and the San Francisco AIDS Foundation, cosponsors, this bill will allow confidential HIV reporting and data sharing between public health officials and health care providers for all reportable diseases to promote the health and wellbeing of people with HIV, without needing to amend California law for each new or existing reportable infection. Expanding the sharing of HIV data for all reportable diseases will allow DPH to respond quickly to an emerging disease affecting people with HIV, including during a public health emergency, and promote improved health outcomes for people with HIV. Strong federal and state privacy laws will remain in place to protect the confidentiality and privacy rights of patients while better addressing the health needs of people with HIV.

Arguments in Opposition

The Department of Finance is opposed to this bill because it may result in a reimbursable state mandate and potential ongoing General Fund costs not included in the state's spending plan. Existing law allows HIV data sharing when the patient with HIV is coinfected with a specified reportable disease in current law. This bill would allow confidential HIV reporting and data sharing for all reportable diseases, without outlining each new reportable disease in law. This bill also updates the requirement for state and local public health department employees and contractors to only sign confidentiality statements once, to requiring them to sign annually to maintain access to this confidential information. The bill removes the requirement for the state to annually review confidentiality agreements, reducing administrative burden on the state.

FISCAL COMMENTS

According to the Assembly Appropriations Committee, no costs to DPH. According to the County Health Executives Association of California and the Health Officers Association of California, minor and absorbable costs to local health departments.

VOTES

SENATE FLOOR: 37-0-3

YES: Alvarado-Gil, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Eggman, Glazer, Gonzalez, Grove, Hurtado, Jones, Laird, Limón, McGuire, Menjivar, Min, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

ABS, ABST OR NV: Allen, Archuleta, Newman

ASM HEALTH: 16-0-0

YES: Bonta, Waldron, Aguiar-Curry, Arambula, Jackson, Flora, Haney, Jones-Sawyer, Maienschein, McCarty, Joe Patterson, Rodriguez, Sanchez, Santiago, Schiavo, Weber

ASM PRIVACY AND CONSUMER PROTECTION: 11-0-0

YES: Bauer-Kahan, Joe Patterson, Bryan, Dixon, Hoover, Irwin, Lowenthal, Ortega, Ward, Wicks, Wilson

ASM APPROPRIATIONS: 14-0-1

YES: Wicks, Sanchez, Arambula, Bryan, Calderon, Wendy Carrillo, Dixon, Mike Fong, Grayson, Haney, Hart, Jim Patterson, Pellerin, Ta

ABS, ABST OR NV: Villapudua

UPDATED

VERSION: June 4, 2024

CONSULTANT: Eliza Brooks / HEALTH / (916) 319-2097 FN: 0004066

Date of Hearing: August 7, 2024

ASSEMBLY COMMITTEE ON APPROPRIATIONS

Buffy Wicks, Chair

SBPCA Bill Id:SB 1333

Author:(Eggman) – As Amended Ver:June 4, 2024

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

SUMMARY:

This bill revises statutes related to confidentiality of HIV-related public health information to expand data sharing for the coordination of, linkage to, or reengagement in care.

Specifically, this bill:

1. Requires state and local health department employees and contractors to annually sign confidentiality agreements prior to accessing confidential HIV-related public health records.
2. Repeals a requirement that the state and local health departments annually review confidentiality agreements.
3. Authorizes the California Department of Public Health (CDPH) and a local public health department (LHD) or an agent of a health department, to disclose a person’s personally identifying information relating to HIV or AIDS in public health records to other state, local, or federal health agencies or to collaborating researchers, for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD.
4. Removes requirements that disclosures by specified communicable disease staff be for the purpose of enhancing the completeness of reporting to the Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with certain diseases.
5. Authorizes state or local public health agency HIV surveillance staff to disclose specified information to a health care provider who provides care to an HIV-positive person for the purpose of facilitating appropriate case management or care coordination or delivery of medical care and treatment.
6. Makes findings and declares the intent of the Legislature to enhance data sharing practices concerning people living with HIV while continuing to prioritize privacy and safety measures to ensure responsible dissemination of sensitive health data and coordination of, linkage to, or reengagement in care.

FISCAL EFFECT:

1. No costs to CDPH.
2. According to the County Health Executives Association of California and the Health Officers Association of California, minor and absorbable costs to local health departments.

COMMENTS:

1. Purpose. This bill is sponsored by APLA Health, Equality California, and the San Francisco AIDS Foundation. According to the author:

California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, mpox, or Shigella, is not allowed. During the 2022 mpox outbreak, CDPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment risking more severe infections.

1. Background. According to CDPH, the recent Mpox outbreak disproportionately affected people with HIV. The CDC estimates 38% of Mpox infections nationally from May through July 2022 were among people with HIV. People with HIV, particularly if the HIV is not virally suppressed, are at the highest risk of severe Mpox infection and death. Because Mpox is not included on the list of conditions under existing law that can be cross referenced with HIV data in the state’s electronic surveillance system, public health officials were unable to document and understand whether people with Mpox were infected with HIV. CDPH indicates that not being able to record HIV status in the secure and confidential data systems used for Mpox investigations meant LHDs were unable to determine whether people diagnosed with Mpox also needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. LHDs and health care providers were also unable to triage Mpox cases and deliver timely, client-centered Mpox services for the people at highest risk of Mpox complications.
   
   This bill allows confidential HIV reporting and data sharing for all reportable communicable diseases between public health officials and health care providers to facilitate the care of patients with HIV.

Analysis Prepared by: Allegra Kim / APPR. / (916) 319-2081

Date of Hearing: July 2, 2024

ASSEMBLY COMMITTEE ON PRIVACY AND CONSUMER PROTECTION

Rebecca Bauer-Kahan, Chair

SBPCA Bill Id:SB 1333

Author:(Eggman) – As Amended Ver:June 4, 2024

PROPOSED CONSENT

SENATE VOTE: 37-0

SUBJECT: Communicable diseases: HIV reporting

SYNOPSIS

In 2022, there was a global mpox (formerly monkeypox) outbreak that included a reported 32,603 cases in the U.S, 6,160 of those in California. According to the Centers for Disease Control, “the main transmission route was associated with sexual activity among certain gay, bisexual, and other men who have sex with men.”

Since mpox was not included in this list of conditions for which CDPH and LHDs can cross reference HIV data, both local and state public health officials were unable to document and understand whether people with mpox were infected with HIV. This delayed their ability to understand if those infected with HIV were adversely impacted by mpox and subsequently delayed the ability to develop specific guidance and outreach, which would have more promptly enabled local public health and clinical partners to prevent severe mpox disease in this population.

Under existing law, CDPH and LHDs are only authorized to share personally identifying information of a person infected with HIV if they have HIV alone or have a coinfection with one or more of seven reportable diseases: chlamydia, gonorrhea, hepatitis B, hepatitis C, meningococcal infection, syphilis, and tuberculosis.

The purpose of this bill is to allow state and local health departments to react more quickly when there are outbreaks of viruses that may disproportionately impact HIV-positive people by allowing LHDs and CDPH to share the personally identifying information of a person coinfected with HIV and any other reportable conditions.

SUMMARY: Expands existing law by removing the limitations on the types of conditions for which the California Department of Public Health (CDPH) and local health departments (LHDs) may disclose personally identifying information of human immunodeficiency virus (HIV) positive individuals in public health records for the coordination of, linkage to, or reengagement in care. Specifically, this bill:

1. Authorizes CDPH and LHDs to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD.
   1. Removes the limitations on disclosure described in 6) b) through d) of existing law, below.
   2. Removes the requirement that the disclosure is for the purpose of enhancing the completeness of reporting to the Centers for Disease Control and Prevention (CDC) of HIV/acquired immunodeficiency virus (AIDS) and coinfection with certain diseases.
2. Authorizes LHD HIV surveillance staff to disclose information to a health care provider who provides care to the HIV-positive person who is the subject of the record for the purpose of facilitating appropriate case management or care coordination or delivery of medical care and treatment.
3. Requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once, and deletes the requirement that DPH and LHDs review the agreements annually.
4. Finds and declares the following:
   1. According to CDPH, more than 142,700 people in California are living with diagnosed HIV infection.
   2. Approximately 73.7 % of people living with diagnosed HIV infection in California are in HIV care and 64.7 % have achieved viral suppression.
   3. The goals of the Ending the HIV Epidemic in the U.S. plan include increasing linkage to care and viral suppression to 95 % by 2025.
   4. Evidence-based data sharing practices allow state and LHDs to leverage public health and health care systems data to more effectively serve people living with HIV.
   5. States the intent of the Legislature to enhance data sharing practices concerning people living with HIV, while continuing to prioritize privacy and safety measures to ensure responsible dissemination of sensitive health data and coordination of, linkage to, or reengagement in care.

EXISTING LAW:

1. Establishes under federal law, the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which sets standards for the privacy of individually identifiable health information and security standards for the protection of electronic protected health information, including, through regulations, that a HIPAA-covered entity may not condition the provision of treatment, payment, enrollment in a health plan, or eligibility for benefits on the provision of an authorization, except under specified circumstances. Provides that if HIPAA’s provisions conflict with state law, the provision that is most protective of patient privacy prevails. (42 U.S.C. § 1320d, et seq.; 45 Code Fed. Regs. Part 164.)
2. Establishes the Confidentiality of Medical Information Act, which establishes protections for the use of medical information. (Civ. Code § 56 et seq.)
   1. Prohibits providers of health care, health care service plans, or contractors, as defined, from sharing medical information without the patient’s written authorization, subject to certain exceptions. (Civ. Code § 56.10.)
3. Requires CDPH to establish a list of diseases and conditions to be reported by local health officers (LHOs) to CDPH.
   1. CDPH must specify requirements related to the timeliness of reporting each disease and condition, the mechanisms required for reports, and the content that must be included in the reports.
   2. Authorizes the list to include both communicable and non-communicable diseases.
   3. Authorizes the list to be modified at any time by CDPH, after consultation with the California Conference of Local Health Officers. (Health & Saf. Code § 120130.)
4. Requires health care providers and laboratories to report cases of HIV infection to the LHO using patient names on a form developed by CDPH.
   1. CDPH and LHD employees and contractors are required to sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records.
   2. Those agreements are required to be reviewed annually by either CDPH or the appropriate LHD. (Health & Saf. Code § 121022.)
5. Prohibits public health records relating to HIV/AIDS containing personally identifying information that were developed or acquired by CDPH or an LHD, or their agent, from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by that person’s guardian or conservator. (Health. & Saf. Code §121025(a).)
   1. Authorizes CDPH or an LHD, or their agent, to disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by CDPH or an LHD. (Health. & Saf. Code § 121025(b).)
   2. Any disclosures made are to include only the information necessary for the purpose of the disclosure and only upon agreement that the information will be kept confidential. (Id. at (c).)
6. Authorizes the following disclosures for the purpose of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with certain diseases:
   1. Disclosure to the health care provider who provides HIV care to the HIV-positive person who is the subject of the record by LHD HIV surveillance staff.
   2. Disclosure by LHD tuberculosis control staff to CDPH tuberculosis control staff, who are authorized to further disclose information to the CDC, except for identifying patient information and only to the extent the information is requested by the CDC for purposes of the investigation, control, or surveillance of HIV and tuberculosis coinfections.
   3. Disclosure by LHD sexually transmitted disease (STD) control staff to CDPH STD control staff, who are authorized to further disclose information to the CDC, except for identifying patient information and only to the extent the information is requested by the CDC for the purposes of the investigation, control, or surveillance of HIV and syphilis, gonorrhea, or chlamydia coinfection.
   4. Disclosure by LHD staff to CDPH staff for purposes of the investigation, control, or surveillance of HIV and its coinfection with hepatitis B, hepatitis C, and meningococcal infection, who are authorized to further disclose information to the CDC, except for identifying patient information and only to the extent the information is requested by the CDC. (Health & Saf. Code § 121025(c)(1).)
7. Authorizes specified LHD staff to further disclose information to CDPH or control staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, the HIV-positive person who is the subject of the record or the health care provider who provides their care. (Health & Saf. Code § 121025(c)(3).)

FISCAL EFFECT: As currently in print, this bill is keyed fiscal.

COMMENTS:

1) Author’s statement. According to the author:

California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, mpox, or Shigella, is not allowed. During the 2022 mpox outbreak, CDPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment risking more severe infections. Not being able to record an mpox case’s HIV status in the secure and confidential data systems for mpox investigations meant that LHDs were also unable to determine whether people diagnosed with mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage mpox cases and delivery of timely, client-centered mpox services for the people at highest risk of mpox complications. This bill will improve California’s ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.

2) Purpose of this bill. In 2022, there was a global mpox (formerly monkeypox) outbreak that included a reported 32,603 cases in the U.S, 6,160 of those in California.^[1] Mpox is a viral illness caused by the monkeypox virus. Symptoms include a skin rash or mucosal lesions which can last 2–4 weeks accompanied by fever, headache, muscle aches, back pain, low energy, and swollen lymph nodes. The virus can be transmitted to humans through physical contact with someone who is infectious, with contaminated materials, or with infected animals. The World Health Organization data shows that 110 countries reported about 87 thousand cases and 112 deaths.^[2] According to the Centers for Disease Control, “the main transmission route was associated with sexual activity among certain gay, bisexual, and other men who have sex with men.”^[3]

Since mpox was not included in this list of conditions for which CDPH and LHDs can cross reference HIV data, both local and state public health officials were unable to document and understand whether people with mpox were infected with HIV. This delayed their ability to understand if those infected with HIV were adversely impacted by mpox and subsequently delayed the ability to develop specific guidance and outreach, which would have more promptly enabled local public health and clinical partners to prevent severe mpox disease in this population.

Under existing law, CDPH and LHDs are only authorized to share personally identifying information of a person infected with HIV if they have HIV alone or have a coinfection with one or more of seven reportable diseases: chlamydia, gonorrhea, hepatitis B, hepatitis C, meningococcal infection, syphilis, and tuberculosis.

The purpose of this bill is to allow state and local health departments to react more quickly when there are outbreaks of viruses that may disproportionately impact HIV-positive people by allowing LHDs and CDPH to share the personally identifying information of a person coinfected with HIV and any other reportable conditions. This ensures that the delays associated with the mbox outbreak will not be repeated as a result of not being able to access HIV cross reference data. The author does not propose waiving any additional privacy protections that have not already been waived in the current law.

3) Related legislation. SB 249 (Leno, Ch. 445, Stats. 2013), among other things, authorized CDPH and LHD to access reports of HIV infection that are electronically submitted by laboratories, and authorized LHD staff to further disclose information to the HIV- positive person or the health care provider.

REGISTERED SUPPORT / OPPOSITION:

Support

APLA Health (co-sponsor) Equality California (co-sponsor) San Francisco Aids Foundation (co-sponsor)

Amador County Arts Council
Asian Americans Advancing Justice Southern California
Bienestar Human Services
California Democratic Party
California Transcends
Christie's Place
City and County of San Francisco
County Health Executives Association of California (CHEAC)
Courage California
El/la Para Translatinas
Glide
Health Officers Association of California
Los Angeles LGBT Center
National Center for Lesbian Rights
Parivar Bay Area
PRC
Radiant Health Centers
San Joaquin Pride Center
Somos Familia Valle
The Pride Panthers Coalition INC
The Source LGBT+ Center
TransFamily Support Services
TransYouth Liberation

Opposition

None on file.

Analysis Prepared by: Julie Salley / P. & C.P. / (916) 319-2200

1. Data from the Centers for Disease Control. https://www.cdc.gov/poxvirus/mpox/response/2022/us-map.html ↑

2. World Health Organization. Mbox Fact Sheet (Apr. 18, 2023), https://www.who.int/news-room/fact-sheets/detail/monkeypox. ↑

3. Centers for Disease Control. Risk of Clade 1 Mpox Outbreaks Among Gay, Bisexual, and Other Men Who Have Sex With Men in the United States (Jun. 4, 2024), https://www.cdc.gov/forecast-outbreak-analytics/about/modeling-forecasting/mpox-gbmsm-technical-brief.html. ↑

Date of Hearing: June 18, 2024

ASSEMBLY COMMITTEE ON HEALTH

Mia Bonta, Chair

SBPCA Bill Id:SB 1333

Author:(Eggman) – As Amended Ver:June 4, 2024

SENATE VOTE: 37-0

SUBJECT: Communicable diseases: HIV reporting.

SUMMARY: Revises and recasts existing law to permit the Department of Public Health (DPH) and local health departments (LHDs) to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by DPH or a LHD. Specifically, this bill:

1. Authorizes DPH and LHDs to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by DPH or a LHD.
   
   1. Removes the limitations on disclosure described in 4) b) through d) of existing law, below.
      
   2. Removes the requirement that the disclosure is for the purpose of enhancing the completeness of reporting to the Centers for Disease Control and Prevention (CDC) of human immunodeficiency virus (HIV)/acquired immunodeficiency virus (AIDS) and coinfection with certain diseases.
      
2. Authorizes LHD HIV surveillance staff to disclose information to a health care provider who provides care to the HIV-positive person who is the subject of the record for the purpose of facilitating appropriate case management or care coordination or delivery of medical care and treatment.
   
3. Requires DPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once, and deletes the requirement that DPH and LHDs review the agreements annually.
   
4. Finds and declares the following:
   1. According to DPH, more than 142,700 people in California are living with diagnosed HIV infection.
   2. Approximately 73.7 % of people living with diagnosed HIV infection in California are in HIV care and 64.7 % have achieved viral suppression.
   3. The goals of the Ending the HIV Epidemic in the U.S. plan include increasing linkage to care and viral suppression to 95 % by 2025.
   4. Evidence-based data sharing practices allow state and LHDs to leverage public health and health care systems data to more effectively serve people living with HIV.
   5. States the intent of the Legislature to enhance data sharing practices concerning people living with HIV, while continuing to prioritize privacy and safety measures to ensure responsible dissemination of sensitive health data and coordination of, linkage to, or reengagement in care.

EXISTING LAW:

1. Requires DPH to establish a list of diseases and conditions to be reported by local health officers (LHOs) to DPH. Requires DPH to specify the timeliness requirements related to the reporting of each disease and condition, and the mechanisms required for, and the content to be included in, reports made. Permits the list to include both communicable and non-communicable diseases. Permits the list to be modified at any time by DPH, after consultation with the California Conference of Local Health Officers. [Health and Safety Code (HSC) §120130]
2. Requires health care providers and laboratories to report cases of HIV infection to the LHO using patient names on a form developed by DPH. Requires DPH and LHD employees and contractors to sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records. Requires those agreements to be reviewed annually by either DPH or the appropriate LHD. [HSC §121022]
3. Prohibits public health records relating to HIV/AIDS containing personally identifying information from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by the person’s guardian or conservator. Permits DPH or an LHD, or their agent, to disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by DPH or an LHD. [HSC §121025]
4. Permits the following disclosures for the purpose of enhancing the completeness of reporting to the CDC of HIV/AIDS and coinfection with certain diseases:
   1. LHD HIV surveillance staff may disclose the information to the health care provider who provides HIV care to the HIV-positive person who is the subject of the record;
      
   2. LHD tuberculosis control staff may disclose the information to DPH tuberculosis control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent the information is requested by the CDC and permitted for purposes of the investigation, control, or surveillance of HIV and tuberculosis coinfections;
      
   3. LHD sexually transmitted disease (STD) control staff may disclose the information to DPH STD control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent it is requested for the purposes of the investigation, control, or surveillance of HIV and syphilis, gonorrhea, or chlamydia coinfection; and,
   4. For purposes of the investigation, control, or surveillance of HIV and its coinfection with hepatitis B, hepatitis C, and meningococcal infection, LHD communicable disease staff may disclose the information to DPH staff, who may further disclose the information, without disclosing patient identifying information, to the CDC to the extent the information is requested. [HSC §121025 (c)(1)]
5. Permits certain LHD staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, to further disclose the information to DPH or LHD STD, communicable disease control, and tuberculosis control staff; the HIV-positive person who is the subject of the record; or, the health care provider who provides their HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care. [HSC §121025 (c)(3)]

FISCAL EFFECT: According to the Senate Appropriations Committee, DPH estimates minor and absorbable costs. Unknown costs to LHDs to annually obtain signed confidentiality agreements. Cost to counties for administration would be potentially reimbursable by the state, subject to a determination by the Commission on State Mandates.

COMMENTS:

1. PURPOSE OF THIS BILL. According to the author, California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, monkeypox (Mpox), or Shigella, is not allowed. The author continues that during the 2022 Mpox outbreak, DPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex Mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment, risking more severe infections. Not being able to record an Mpox case’s HIV status in the secure and confidential data systems for Mpox investigations meant that LHDs were also unable to determine whether people diagnosed with Mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. The author contends that California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage Mpox cases and delivery of timely, client-centered Mpox services for the people at highest risk of Mpox complications. The author concludes that this bill will improve California’s ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.
2. BACKGROUND.
   1. Prevalence of diagnosed HIV infection in California. According DPH, the prevalence of diagnosed HIV infection was 355.6 per 100,000 population in 2022, compared to 343.1 per 100,000 in 2018 – an increase of 3.7%. Of the 142,772 people living with diagnosed HIV infection in 2022, 73.7% were in HIV care and 64.7% achieved viral suppression. Among all racial/ethnic groups, African Americans are the most disproportionately affected by HIV. While Latinx and white individuals make up the largest percentage of persons living with diagnosed HIV, the rate of HIV among African Americans is substantially higher (1,012.3 per 100,000 population, versus 319.5 per 100,000 among whites and 364.8 per 100,000 among Latinx). The rate of new HIV diagnoses among African Americans is 4.4 times higher than whites among men and 5.7 times higher among women. Latinx are also disproportionately affected by HIV with rates of new HIV diagnoses 2.7 times higher than white among men and 1.6 times higher among women. Most of California’s living HIV cases are attributed to male-to-male sexual transmission (66.3%; 8.2% of living cases are attributable to high-risk heterosexual contact; 6% to men who have sex with men who also inject drugs; 5.3% to injection drug use; 1.9% to transgender sexual contact; 0.5% to perinatal exposure and 11.9% to other or unknown sources including other heterosexual contact).
      
   2. HIV/Mpox coinfection. According to DPH, the recent Mpox outbreak disproportionately affected people with HIV. The CDC estimates 38% of Mpox infections nationally from May through July 2022 were among people with HIV. According to the CDC, people with HIV, particularly people whose HIV is not virally suppressed, are more likely to be hospitalized and can be at the highest risk of severe Mpox infection and death if they are infected with Mpox compared with people who are infected with Mpox who do not have HIV. Through March 2024, 40.2% of Mpox infections in California have occurred in people with HIV. All three of the Mpox deaths in California during the recent outbreak were among people with advanced AIDS. People with advanced HIV are most likely to experience severe manifestations of their Mpox infection; these are also the patients about whom DPH was most often consulted on at the height of the Mpox outbreak in 2022. People with HIV whose viral load is not fully suppressed have a greater clinical need both for Mpox vaccination and for Mpox treatment due to increased risk for severe disease and death. CDC recommends considering administration of Mpox treatment for people with HIV who are not virally suppressed, and knowing this information is critical to facilitate prompt treatment which can prevent severe health outcomes of HIV/Mpox coinfection, including death.
      
   3. Impact of statutory limitations on Public Health’s response to the Mpox outbreak in California. DPH indicates that because Mpox is not included on the list of conditions under existing law that can be cross referenced with HIV data in the state’s electronic surveillance system, public health officials were unable to document and understand whether people with Mpox were infected with HIV in our surveillance systems. This delayed public health’s ability to understand that this population, which we now know is at greater risk of severe complications and death, was adversely impacted by Mpox and consequently delayed DPH’s ability to develop the specific guidance and outreach that would have more promptly enabled local public health and clinical partners to prevent severe Mpox disease in this population. DPH indicates that not being able to record an Mpox case’s HIV status in the secure and confidential data systems used by nearly all local health jurisdictions in California (California Reportable Disease Information Exchange and CalCONNECT) for Mpox investigations meant LHDs are unable to determine whether people diagnosed with Mpox also needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. DPH further indicates that existing law limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage Mpox cases and delivery of timely, client-centered Mpox services for the people at highest risk of Mpox complications. Knowing an individual’s HIV status is critical to timely and comprehensive Mpox case investigation, including to identify priority cases for follow up and to guide their care and facilitate prompt treatment. People with HIV whose viral load is not fully suppressed have a greater clinical need both for Mpox vaccination and treatment due to increased risk for severe disease and death. DPH indicates that due to statutory limitations DPH was not able to use all of the data that could have been available to make public health decisions.

This bill allows confidential HIV reporting and data sharing for all reportable communicable diseases between public health officials and health care providers in order to facilitate the care of patients with HIV.

1. SUPPORT. According to APLA Health, Equality California, and the San Francisco AIDS Foundation, cosponsors, this bill will allow confidential HIV reporting and data sharing between public health officials and health care providers for all reportable diseases to promote the health and wellbeing of people with HIV, without needing to amend California law for each new or existing reportable infection. Expanding the sharing of HIV data for all reportable diseases will allow DPH to respond quickly to an emerging disease affecting people with HIV, including during a public health emergency, and promote improved health outcomes for people with HIV. Strong federal and state privacy laws will remain in place to protect the confidentiality and privacy rights of patients while better addressing the health needs of people with HIV.
   
2. DOUBLE REFERRAL. This bill is double-referred, upon passage of this committee, it will be referred to the Assembly Committee on Judiciary.
   

REGISTERED SUPPORT / OPPOSITION:

Support

Amador County Arts Council

APLA Health

Asian Americans Advancing Justice Southern California

Bienestar Human Services

California Democratic Party

California Transcends

Christie's Place

City and County of San Francisco

County Health Executives Association of California (CHEAC)

Courage California

El/la Para TransLatinas

Equality California

Glide

Health Officers Association of California

Los Angeles LGBT Center

National Center for Lesbian Rights

Parivar Bay Area

PRC

Radiant Health Centers

San Francisco AIDS Foundation

San Joaquin Pride Center

Somos Familia Valle

The Pride Panthers Coalition INC

The Source LGBT+ Center

TransFamily Support Services

TransYouth Liberation

Opposition

None on file.

Analysis Prepared by: Eliza Brooks / HEALTH / (916) 319-2097

 THIRD READING  

Bill No: SB 1333

Author: Eggman (D) and Roth (D)

Introduced: 2/16/24

Vote: 21

SENATE HEALTH COMMITTEE: 11-0, 3/20/24

AYES: Roth, Nguyen, Glazer, Gonzalez, Grove, Hurtado, Limón, Menjivar, Rubio, Smallwood-Cuevas, Wiener

SENATE JUDICIARY COMMITTEE: 11-0, 4/9/24

AYES: Umberg, Wilk, Allen, Ashby, Caballero, Durazo, Laird, Min, Niello, Stern, Wahab

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/16/24

AYES: Caballero, Jones, Ashby, Becker, Bradford, Seyarto, Wahab

SUBJECT: Communicable diseases: HIV reporting

SOURCE: LGBTQ Legislative Caucus (co-sponsor)

APLA Health (co-sponsor)

Equality California (co-sponsor)

San Francisco AIDS Foundation (co-sponsor)

DIGEST:

Revises and recasts existing law to permit the California Department of Public Health (CDPH) and local health departments (LHDs) to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD.

ANALYSIS:

Existing law:

1. Requires CDPH to establish a list of diseases and conditions to be reported by local health officers (LHOs) to CDPH. Requires CDPH to specify the timeliness requirements related to the reporting of each disease and condition, and the mechanisms required for, and the content to be included in, reports made. Permits the list to include both communicable and non-communicable diseases. Permits the list to be modified at any time by CDPH, after consultation with the California Conference of Local Health Officers. [HSC §120130]
2. Requires health care providers and laboratories to report cases of HIV infection to the LHO using patient names on a form developed by CDPH. Requires CDPH and LHD employees and contractors to sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records. Requires those agreements to be reviewed annually by either CDPH or the appropriate LHD. [HSC §121022]
3. Prohibits public health records relating to HIV/AIDS containing personally identifying information from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by the person’s guardian or conservator. Permits CDPH or an LHD, or their agent, to disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by CDPH or an LHD. [HSC §121025]
4. Permits the following disclosures for the purpose of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with certain diseases:
   1. LHD HIV surveillance staff may disclose the information to the health care provider who provides HIV care to the HIV-positive person who is the subject of the record;
   2. LHD tuberculosis control staff may disclose the information to CDPH tuberculosis control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent the information is requested by the CDC and permitted for purposes of the investigation, control, or surveillance of HIV and tuberculosis coinfections;
   3. LHD sexually transmitted disease (STD) control staff may disclose the information to CDPH STD control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent it is requested for the purposes of the investigation, control, or surveillance of HIV and syphilis, gonorrhea, or chlamydia coinfection; and,
   4. For purposes of the investigation, control, or surveillance of HIV and its coinfection with hepatitis B, hepatitis C, and meningococcal infection, LHD communicable disease staff may disclose the information to CDPH staff, who may further disclose the information, without disclosing patient identifying information, to the CDC to the extent the information is requested. [HSC §121025 (c)(1)]
5. Permits certain LHD staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, to further disclose the information to CDPH or LHD STD, communicable disease control, and tuberculosis control staff; the HIV-positive person who is the subject of the record; or, the health care provider who provides their HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care. [HSC §121025 (c)(3)]

This bill:

1. Permits CDPH and LHDs to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD. Permits LHD HIV surveillance staff to disclose the information to a health care provider who provides care to the HIV-positive person who is the subject of the record.
2. Deletes existing law [in 4) b)-d) above] which only permits disclosure of HIV/AIDS public health records for the purpose of enhancing the completeness of reporting to the CDC of HIV/AIDS and coinfection with certain diseases.
3. Deletes existing law which permits disclosure of public health records only for the purpose of facilitating care for persons coinfected with HIV and specified reportable diseases, and instead permits the disclosure of that information for facilitating appropriate case management or care coordination or delivery of medical care and treatment of persons coinfected with HIV and any reportable disease.
4. Requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once. Deletes the requirement that CDPH and LHDs review the agreements annually.
5. Makes other technical, clarifying changes.

COMMENTS:

1. Author’s statement. According to the author:

California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, mpox, or Shigella, is not allowed. During the 2022 mpox outbreak, CDPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment risking more severe infections. Not being able to record an mpox case’s HIV status in the secure and confidential data systems for mpox investigations meant that LHDs were also unable to determine whether people diagnosed with mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage mpox cases and delivery of timely, client-centered mpox services for the people at highest risk of mpox complications. This bill will improve California’s ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.

1. Background. According CDPH, the prevalence of diagnosed HIV infection was 355.6 per 100,000 population in 2022, compared to 343.1 per 100,000 in 2018 – an increase of 3.7%. Of the 142,772 people living with diagnosed HIV infection in 2022, 73.7% were in HIV care and 64.7% achieved viral suppression. Among all racial/ethnic groups, African Americans are the most disproportionately affected by HIV. While Latinx and white individuals make up the largest percentage of persons living with diagnosed HIV, the rate of HIV among African Americans is substantially higher (1,012.3 per 100,000 population, versus 319.5 per 100,000 among whites and 364.8 per 100,000 among Latinx). The rate of new HIV diagnoses among African Americans is 4.4 times higher than whites among men and 5.7 times higher among women. Latinx are also disproportionately affected by HIV with rates of new HIV diagnoses 2.7 times higher than white among men and 1.6 times higher among women. Most of California’s living HIV cases are attributed to male-to-male sexual transmission (66.3%; 8.2% of living cases are attributable to high-risk heterosexual contact; 6% to men who have sex with men who also inject drugs; 5.3% to injection drug use; 1.9% to transgender sexual contact; 0.5% to perinatal exposure and 11.9% to other or unknown sources including other heterosexual contact.
2. HIV/mpox coinfection. According to CDPH, the recent mpox outbreak disproportionately affected people with HIV. The CDC estimates 38% of mpox infections nationally from May through July 2022 were among people with HIV. According to CDC, people with HIV, particularly people whose HIV is not virally suppressed, are more likely to be hospitalized and can be at the highest risk of severe mpox infection and death if they are infected with mpox compared with people who are infected with mpox who do not have HIV. Through March 2024, 40.2% of mpox infections in California have occurred in people with HIV. All three of the mpox deaths in California during the recent outbreak were among people with advanced AIDS. People with advanced HIV are most likely to experience severe manifestations of their mpox infection; these are also the patients about whom CDPH was most often consulted on at the height of the mpox outbreak in 2022. People with HIV whose viral load is not fully suppressed have a greater clinical need both for mpox vaccination and for mpox treatment due to increased risk for severe disease and death. CDC recommends considering administration of mpox treatment for people with HIV who are not virally suppressed, and knowing this information is critical to facilitate prompt treatment which can prevent severe health outcomes of HIV/mpox coinfection, including death.

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

According to the Senate Appropriations Committee:

The California Department of Public Health (CDPH) estimates minor and absorbable costs.

Unknown costs to local health departments to annually obtain signed confidentiality agreements. Cost to counties for administration would be potentially reimbursable by the state, subject to a determination by the Commission on State Mandates.

SUPPORT: (Verified 5/16/24)

California LGBTQ Legislative Caucus (co-sponsor)

APLA Health (cosponsor)

Equality California (co-sponsor)

San Francisco AIDS Foundation (co-sponsor)

Amador County Arts Council

Asian Americans Advancing Justice Southern California

Bienestar Human Services

California Medical Association

California Transcends

Christie’s Place

County Health Executives Association of California

Courage California

El/La Para Translatinas

End the Epidemics

GLIDE

Los Angeles LGBT Center

National Center for Lesbian Rights

Parivar Bay Area

PRC

Pride Panthers Coalition, Inc.

Radiant Health Centers

San Francisco Community Health Center

San Joaquin Pride Center

Somos Familia Valle

Stanford Healthcare

The Pride Panthers Coalition, Inc.

The Source LGBT+ Center

Transfamily Support Services

Transyouth Liberation

One individual

OPPOSITION: (Verified 5/16/24)

None received

ARGUMENTS IN SUPPORT: Supporters write:

This bill will allow confidential HIV reporting and data sharing between public health officials and health care providers for all reportable communicable diseases to promote the health and wellbeing of people with HIV, without needing to amend California law for each new or existing reportable infection. Expanding the sharing of HIV data for all reportable communicable diseases will allow CDPH to respond quickly to an emerging disease affecting people with HIV, including during a public health emergency, and promote improved health outcomes for people with HIV. This bill will improve care coordination for people with HIV who are coinfected with another disease by allowing confidential data sharing between state and local public health officials and health care providers. Strong federal and state privacy laws will remain in place to protect the confidentiality and privacy rights of patients while better addressing the health needs of people with HIV.

Prepared by: Melanie Moreno / HEALTH / (916) 651-4111

5/17/24 18:49:04

**** END ****

SENATE COMMITTEE ON APPROPRIATIONS

Senator Anna Caballero, Chair

2023 - 2024 Regular Session

SB 1333 (Eggman) - Communicable diseases: HIV reporting

Bill Summary:

SB 1333 would revise and recast existing law regarding the reporting and disclosure of human immunodeficiency virus (HIV) cases.

Fiscal Impact:

• The California Department of Public Health (CDPH) estimates minor and absorbable costs.
• Unknown costs to local health departments to annually obtain signed confidentiality agreements. Cost to counties for administration would be potentially reimbursable by the state, subject to a determination by the Commission on State Mandates.

Background:

Current law requires health care providers and laboratories to report cases of HIV infection to the local health officer using patient names on a form developed by CDPH. CDPH and local health department (LHD) employees and contractors must sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records. Those agreements must be reviewed annually by either CDPH or the appropriate LHD. CDPH indicates it currently reviews and confirms that all required LHD and CDPH staff have completed and signed the annual confidentiality agreements.

Current law prohibits public health records relating to HIV or acquired immunodeficiency syndrome (AIDS), containing personally identifying information that were developed or acquired by CDPH or an LHD, from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by the person’s guardian or conservator. CDPH or an LHD may disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by CDPH or an LHD. Current law permits specific disclosures for the purpose of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, and meningococcal infection.

Current law also permits certain public health staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, to further disclose the information to other specified public health staff, the HIV-positive person who is the subject of the record, or the health care provider, as specified.

Proposed Law:

Specific provisions of the bill would:

• Require CDPH and LHD employees and their contractors to sign confidentiality agreements annually (rather than signing the agreements once); and delete the requirement that CDPH and LHDs review the agreements annually.
• Delete existing authority which only allows the disclosure of HIV/AIDS public health records specific to the purpose of enhancing the completeness of reporting to the CDC of HIV/AIDS and coinfection with and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection.
• Additionally authorize CDPH or an LHD to disclose personally identifying information in HIV/AIDS public health records when necessary for the coordination of, linkage to, or reengagement in care for the person.
• Allow the disclosure of HIV cases between public health staff, the HIV-positive person, and the HIV-positive person’s health care provider for purposes of facilitating appropriate care for persons coinfected with HIV and other communicable diseases, not only tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection.

-- END --

SENATE JUDICIARY COMMITTEE

Senator Thomas Umberg, Chair

2023-2024 Regular Session

Bill No: SB 1333 (Author:Eggman)

Version: February 16, 2024

Hearing Date: April 9, 2024

Fiscal: Yes

Urgency: No

AMConsultant:

SUBJECT

Communicable diseases: HIV reporting

DIGEST

This bill authorize the California Department of Public Health (CDPH) and local health departments (LHDs) to disclose personally identifying information in public health records of persons with HIV or AIDS for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD. The bill removes certain limitations on disclosure, such as that disclosure is authorized only when certain coinfections are involved. The bill requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once, and deletes the requirement that CDPH and LHDs review the confidentiality agreements annually.

EXECUTIVE SUMMARY

The mpox outbreak in 2022 highlighted a deficit in California’s existing statutes related to the ability of state and local public health officials to access and share personal information about those infected with HIV or AIDS. The existing statutes only allow information to be disclosed if a person has HIV alone or HIV and certain coinfections that are specified in statute. As mpox, was not one of the specified coinfections health officials were unable to effectively track how mpox was affecting the population of those with HIV. This bill will allow state and local health officials to disclose information for any coinfection, which will allow them to be prepared for any future outbreaks that may occur, subject to existing confidentiality provisions. The bill would also requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once. The bill is sponsored by APLA Health, the California Legislative LGBTQ Caucus, Equality California, and the San Francisco Aids Foundation. The bill is supported by numerous organizations representing the LGBTQ community. This bill passed the Senate Health Committee on a vote of 11 to 0.

PROPOSED CHANGES TO THE LAW

Existing federal law:

1. Establishes the Health Insurance Portability and Accountability Act (HIPAA), which provides privacy protections for patients’ protected health information and generally prohibits a covered entity, as defined (health plan, health care provider, and health care clearing house), from using or disclosing protected health information except as specified or as authorized by the patient in writing. (45 C.F.R. § 164.500 et seq.)
2. Provides that if HIPAA’s provisions conflict with a provision of state law, the provision that is the most protective of patient privacy prevails. (45 C.F.R. § 164.500 et seq.)

Existing state law:

1. Establishes the Confidentiality of Medical Information Act, which establishes protections for the use of medical information. (Civ. Code § 56 et seq.)
   1. Prohibits providers of health care, health care service plans, or contractors, as defined, from sharing medical information without the patient’s written authorization, subject to certain exceptions. (Civ. Code § 56.10.)
2. Requires CDPH to establish a list of diseases and conditions to be reported by local health officers (LHOs) to CDPH.
   1. CDPH must specify requirements related to the timeliness of reporting each disease and condition, the mechanisms required for reports, and the content that must be included in the reports.
   2. Authorizes the list to include both communicable and non-communicable diseases.
   3. Authorizes the list to be modified at any time by CDPH, after consultation with the California Conference of Local Health Officers. (Health & Saf. Code § 120130.)
3. Requires health care providers and laboratories to report cases of HIV infection to the LHO using patient names on a form developed by CDPH.
   1. CDPH and LHD employees and contractors are required to sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records.
   2. Those agreements are required to be reviewed annually by either CDPH or the appropriate LHD. (Health & Saf. Code § 121022.)
4. Prohibits public health records relating to HIV/AIDS containing personally identifying information that were developed or acquired by CDPH or an LHD, or their agent, from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by that person’s guardian or conservator. (Health & Saf. Code §121025(a).)
   1. Authorizes CDPH or an LHD, or their agent, to disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by CDPH or an LHD. (Id. at (b).)
   2. Any disclosures made are to include only the information necessary for the purpose of the disclosure and only upon agreement that the information will be kept confidential. (Id. at (c).)
5. Authorizes the following disclosures for the purpose of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with certain diseases:
   1. disclosure to the health care provider who provides HIV care to the HIV-positive person who is the subject of the record by LHD HIV surveillance staff;
   2. disclosure by LHD tuberculosis control staff to CDPH tuberculosis control staff, who are authorized to further disclose information to the CDC, except for identifying patient information and only to the extent the information is requested by the CDC for purposes of the investigation, control, or surveillance of HIV and tuberculosis coinfections;
   3. disclosure by LHD sexually transmitted disease (STD) control staff to CDPH STD control staff, who are authorized to further disclose information to the CDC, except for identifying patient information and only to the extent the information is requested by the CDC for the purposes of the investigation, control, or surveillance of HIV and syphilis, gonorrhea, or chlamydia coinfection; and
   4. disclosure by LHD staff to CDPH staff for purposes of the investigation, control, or surveillance of HIV and its coinfection with hepatitis B, hepatitis C, and meningococcal infection, who are authorized to further disclose information to the CDC, except for identifying patient information and only to the extent the information is requested by the CDC. (Health & Saf. Code § 121025(c)(1).)
6. Authorizes specified LHD staff to further disclose information to CDPH or control staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, the HIV-positive person who is the subject of the record or the health care provider who provides their care. (Health & Saf. Code § 121025(c)(3).)

This bill:

1. Authorizes CDPH and LHDs to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD.
   1. Removes the limitations on disclosure described in 5)(b) through d), above.
   2. Removes the requirement that the disclosure is for the purpose of enhancing the completeness of reporting to the CDC of HIV/AIDS and coinfection with certain diseases.
2. Authorizes LHD HIV surveillance staff to disclose information to a health care provider who provides care to the HIV-positive person who is the subject of the record for the purpose of facilitating appropriate case management or care coordination or delivery of medical care and treatment.
3. Requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, rather than signing the agreements once, and deletes the requirement that CDPH and LHDs review the agreements annually.

COMMENTS

1. Stated need for the bill

The authors write:

California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable diseases, such as hepatitis A, mpox, or Shigella, is not allowed. During the 2022-23 mpox outbreak, CDPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment risking more severe infections. Not being able to record an mpox case’s HIV status in the secure and confidential data systems for mpox investigations meant that LHDs were also unable to determine whether people diagnosed with mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage mpox cases and delivery of timely, client-centered mpox services for the people at highest risk of mpox complications. This bill will improve California’s ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.

1. Recent outbreak of mpox revealed deficiency in current statutes related to authority of CDPH and LHDs to share confidential personally identifying information of persons affected with HIV or AIDS to coordinate care

Under existing law, CDPH and LHDs are only authorized to share personally identifying information of a person infected with HIV if they have HIV alone or have a coinfection with one or more of seven reportable diseases: chlamydia, gonorrhea, hepatitis B, hepatitis C, meningococcal infection, syphilis, and tuberculosis. In 2022, there was an mpox outbreak in the U.S., and since mpox was not included on this list of conditions for which CDPH and LHDs can cross reference HIV data, both local and state public health officials were unable to document and understand whether people with mpox were infected with HIV. This delayed their ability to understand if those infected with HIV were adversely impacted by mpox and subsequently delayed the ability to develop specific guidance and outreach, which would have more promptly enabled local public health and clinical partners to prevent severe mpox disease in this population.

As noted in the Senate Health Committee analysis of this bill:

According to CDPH, the recent mpox outbreak disproportionately affected people with HIV. The CDC estimates 38% of mpox infections nationally from May through July 2022 were among people with HIV. According to CDC, people with HIV, particularly people whose HIV is not virally suppressed, are more likely to be hospitalized and can be at the highest risk of severe mpox infection and death if they are infected with mpox compared with people who are infected with mpox who do not have HIV. Through March 2024, 40.2% of mpox infections in California have occurred in people with HIV. All three of the mpox deaths in California during the recent outbreak were among people with advanced AIDS. People with advanced HIV are most likely to experience severe manifestations of their mpox infection; these are also the patients about whom CDPH was most often consulted on at the height of the mpox outbreak in 2022. People with HIV whose viral load is not fully suppressed have a greater clinical need both for mpox vaccination and for mpox treatment due to increased risk for severe disease and death. CDC recommends considering administration of mpox treatment for people with HIV who are not virally suppressed, and knowing this information is critical to facilitate prompt treatment which can prevent severe health outcomes of HIV/mpox coinfection, including death.^[1]

In response to the experience of CDPH and LDHs during the mpox outbreak, this bill seeks to remove the existing limitations on disclosing personally identifying information to only those instances where coinfection of specified diseases exist to enable public health officials to have the necessary tools to respond to any future outbreaks of disease. The author and sponsors of the bill state that this will lead to better public health outcomes for those infected with HIV and the state as a whole. The bill still keeps all existing confidentiality requirements around sharing of personally identifying information and requires CDPH and LHD employees and their contractors to sign confidentiality agreements annually, as opposed to only signing the agreements once.

1. Statements in support

The sponsors of the bill write:

[C]urrent law prohibits state and local public health officials from sharing HIV information with health care providers for a person coinfected with a communicable disease not specified in the law, even in response to requests for CDPH clinical consultation during a public health emergency (such as COVID-19 or mpox). As a result, people coinfected with HIV and other communicable diseases are at increased risk for severe health outcomes when their care is delayed or suboptimal because their health care provider is unable to consider the patient’s HIV status as a part of their care and treatment plan.

SB 1333 will allow confidential HIV reporting and data sharing between public health officials and health care providers for all reportable communicable diseases to promote the health and wellbeing of people with HIV, without needing to amend California law for each new or existing reportable infection. Expanding the sharing of HIV data for all reportable communicable diseases will allow CDPH to respond quickly to an emerging disease affecting people with HIV, including during a public health emergency, and promote improved health outcomes for people with HIV. Strong federal and state privacy laws will remain in place to protect the confidentiality and privacy rights of patients while better addressing the health needs of people with HIV.

SUPPORT

APLA Health (sponsor)

California Legislative LGBTQ Caucus (sponsor)

County Health Executives Association of California

Equality California (sponsor)

San Francisco Aids Foundation (sponsor)

Amador County Arts Council

Bienestar Human Services

Christie's Place

Courage California

End the Epidemics

GLIDE

Los Angeles LGBT Center

PRC

Pride Panthers Coalition Inc.

Radiant Health Centers

The Source LGBT+ Center

One individual

OPPOSITION

None received

RELATED LEGISLATION

Pending Legislation: None known.

Prior Legislation: SB 246 (Leno, Ch. 445, Stats. 2013), among other things, authorized CDPH and LHD to access reports of HIV infection that are electronically submitted by laboratories, and authorized LHD staff to further disclose information to the HIV-positive person or the health care provider.

PRIOR VOTES

Senate Health Committee (Ayes 11, Noes 0)

**************

1. Sen. Health Comm. analysis of SB 1333 (2023-24 reg. session) as introduced Feb. 16, 2024 at p. 3. ↑

SENATE COMMITTEE ON HEALTH

Senator Richard Roth, Chair

BILL NO: SB 1333

SUBJECT: Communicable diseases: HIV reporting

SUMMARY:

1. Revises and recasts existing law to permit the California Department of Public Health (CDPH) and local health departments (LHDs) to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD.

Existing law:

1. Requires CDPH to establish a list of diseases and conditions to be reported by local health officers (LHOs) to CDPH. Requires CDPH to specify the timeliness requirements related to the reporting of each disease and condition, and the mechanisms required for, and the content to be included in, reports made. Permits the list to include both communicable and non-communicable diseases. Permits the list to be modified at any time by CDPH, after consultation with the California Conference of Local Health Officers. [HSC §120130]
2. Requires health care providers and laboratories to report cases of HIV infection to the LHO using patient names on a form developed by CDPH. Requires CDPH and LHD employees and contractors to sign confidentiality agreements, which include information related to the penalties for a breach of confidentiality and the procedures for reporting a breach of confidentiality, prior to accessing confidential HIV-related public health records. Requires those agreements to be reviewed annually by either CDPH or the appropriate LHD. [HSC §121022]
3. Prohibits public health records relating to HIV/AIDS containing personally identifying information that were developed or acquired by CDPH or an LHD, or their agent, from being disclosed, except for public health purposes or pursuant to a written authorization by the person who is the subject of the record or by the person’s guardian or conservator. Permits CDPH or an LHD, or their agent, to disclose personally identifying information in public health records to other local, state, or federal public health agencies or to corroborating medical researchers, when the confidential information is necessary to carry out the duties of the agency or researcher in the investigation, control, or surveillance of disease, as determined by CDPH or an LHD. [HSC §121025]
4. Permits the following disclosures for the purpose of enhancing the completeness of reporting to the federal Centers for Disease Control and Prevention (CDC) of HIV/AIDS and coinfection with certain diseases:
   1. LHD HIV surveillance staff may disclose the information to the health care provider who provides HIV care to the HIV-positive person who is the subject of the record;
   2. LHD tuberculosis control staff may disclose the information to CDPH tuberculosis control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent the information is requested by the CDC and permitted for purposes of the investigation, control, or surveillance of HIV and tuberculosis coinfections;
   3. LHD sexually transmitted disease (STD) control staff may disclose the information to CDPH STD control staff, who may further disclose the information, without disclosing patient identifying information, to the CDC, to the extent it is requested for the purposes of the investigation, control, or surveillance of HIV and syphilis, gonorrhea, or chlamydia coinfection; and,
   4. For purposes of the investigation, control, or surveillance of HIV and its coinfection with hepatitis B, hepatitis C, and meningococcal infection, LHD communicable disease staff may disclose the information to CDPH staff, who may further disclose the information, without disclosing patient identifying information, to the CDC to the extent the information is requested. [HSC §121025 (c)(1)]
5. Permits certain LHD staff, for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, to further disclose the information to CDPH or LHD STD, communicable disease control, and tuberculosis control staff; the HIV-positive person who is the subject of the record; or, the health care provider who provides their HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care. [HSC §121025 (c)(3)]

This bill:

1. Permits CDPH and LHDs to disclose personally identifying information in public health records for the coordination of, linkage to, or reengagement in care, as determined by CDPH or a LHD. Permits LHD HIV surveillance staff to disclose the information to a health care provider who provides care to the HIV-positive person who is the subject of the record.
2. Deletes existing law [in 4) b)-d) above] which only permits disclosure of HIV/AIDS public health records for the purpose of enhancing the completeness of reporting to the CDC of HIV/AIDS and coinfection with certain diseases.
3. Deletes existing law [in 4) in above] which permits disclosure of public health records only for the purpose of facilitating care for persons coinfected with HIV and specified reportable diseases, and instead permits the disclosure of that information for facilitating appropriate case management or care coordination or delivery of medical care and treatment of persons coinfected with HIV and any reportable disease.
4. Requires CDPH and LHD employees and their contractors to sign confidentiality agreements [specified in 1) of existing law above] annually, rather than signing the agreements once. Deletes the requirement that CDPH and LHDs review the agreements annually.
5. Makes other technical, clarifying changes.

FISCAL EFFECT:

This bill has not been analyzed by a fiscal committee.

COMMENTS:

1. Author’s statement. According to the author, California law only allows state and local public health personnel to communicate with each other or with health care providers about a person’s HIV status to facilitate medical care and treatment if the person has HIV alone or has HIV coinfection with specific diseases (tuberculosis, hepatitis B, hepatitis C, meningococcal infection, chlamydia, gonorrhea, syphilis, or meningococcal infection). Sharing of information for other reportable communicable disease, such as hepatitis A, mpox, or Shigella, is not allowed. During the 2022-23 mpox outbreak, CDPH could not disclose a patient’s HIV status to an LHD or health care provider even when responding to an urgent request for clinical consultation on a complex mpox case, potentially resulting in more fragmented patient care and delaying appropriate treatment risking more severe infections. Not being able to record an mpox case’s HIV status in the secure and confidential data systems for mpox investigations meant that LHDs were also unable to determine whether people diagnosed with mpox needed linkages to HIV care or prevention services, resulting in missed opportunities to prevent HIV transmission. California laws limiting the sharing of HIV data has seriously hindered the ability of LHDs and health care providers to triage mpox cases and delivery of timely, client-centered mpox services for the people at highest risk of mpox complications. This bill will improve California’s ability to ensure timely, quality health care for people with HIV and other reportable communicable diseases.
2. Background. According CDPH, the prevalence of diagnosed HIV infection was 355.6 per 100,000 population in 2022, compared to 343.1 per 100,000 in 2018 – an increase of 3.7%. Of the 142,772 people living with diagnosed HIV infection in 2022, 73.7% were in HIV care and 64.7% achieved viral suppression. Among all racial/ethnic groups, African Americans are the most disproportionately affected by HIV. While Latinx and white individuals make up the largest percentage of persons living with diagnosed HIV, the rate of HIV among African Americans is substantially higher (1,012.3 per 100,000 population, versus 319.5 per 100,000 among whites and 364.8 per 100,000 among Latinx). The rate of new HIV diagnoses among African Americans is 4.4 times higher than whites among men and 5.7 times higher among women. Latinx are also disproportionately affected by HIV with rates of new HIV diagnoses 2.7 times higher than white among men and 1.6 times higher among women. Most of California’s living HIV cases are attributed to male-to-male sexual transmission (66.3%; 8.2% of living cases are attributable to high-risk heterosexual contact; 6% to men who have sex with men who also inject drugs; 5.3% to injection drug use; 1.9% to transgender sexual contact; 0.5% to perinatal exposure and 11.9% to other or unknown sources including other heterosexual contact.
3. HIV/mpox coinfection. According to CDPH, the recent mpox outbreak disproportionately affected people with HIV. The CDC estimates 38% of mpox infections nationally from May through July 2022 were among people with HIV. According to CDC, people with HIV, particularly people whose HIV is not virally suppressed, are more likely to be hospitalized and can be at the highest risk of severe mpox infection and death if they are infected with mpox compared with people who are infected with mpox who do not have HIV. Through March 2024, 40.2% of mpox infections in California have occurred in people with HIV. All three of the mpox deaths in California during the recent outbreak were among people with advanced AIDS. People with advanced HIV are most likely to experience severe manifestations of their mpox infection; these are also the patients about whom CDPH was most often consulted on at the height of the mpox outbreak in 2022. People with HIV whose viral load is not fully suppressed have a greater clinical need both for mpox vaccination and for mpox treatment due to increased risk for severe disease and death. CDC recommends considering administration of mpox treatment for people with HIV who are not virally suppressed, and knowing this information is critical to facilitate prompt treatment which can prevent severe health outcomes of HIV/mpox coinfection, including death.
4. Double referral. This bill has been double referred. Should it pass out of this Committee, it will be referred to the Committee on Judiciary.
5. Support. Supporters write that this bill will allow confidential HIV reporting and data sharing between public health officials and health care providers for all reportable communicable diseases to promote the health and wellbeing of people with HIV, without needing to amend California law for each new or existing reportable infection. Expanding the sharing of HIV data for all reportable communicable diseases will allow CDPH to respond quickly to an emerging disease affecting people with HIV, including during a public health emergency, and promote improved health outcomes for people with HIV. This bill will improve care coordination for people with HIV who are coinfected with another disease by allowing confidential data sharing between state and local public health officials and health care providers. Strong federal and state privacy laws will remain in place to protect the confidentiality and privacy rights of patients while better addressing the health needs of people with HIV.

SUPPORT AND OPPOSITION:

Support: LGBTQ Legislative Caucus (cosponsor)

APLA Health (cosponsor)

Equality California (cosponsor)

San Francisco AIDS Foundation (cosponsor)

Amador County Arts Council

Bienestar Human Services

Christie’s Place

Courage California

End the Epidemics

GLIDE

Los Angeles LGBT Center

PRC

Pride Panthers Coalition, Inc.

Radiant Health Centers

The Source LGBT+ Center

One individual

Oppose: None received

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