Can there really be anything innovative in New York state's plan to "End AIDS"? No, if you only read the first few pages of the plan's blueprint. Yes, if you read it to the end.
Last week, Governor Andrew M. Cuomo revealed the blueprint for the state's plan to end the HIV epidemic. The blueprint was produced by the Ending the Epidemic Task Force as part of a multiyear process with feedback from the public and a host of community partners. The Task Force was established to support Cuomo's three-point plan to reduce new HIV infections in New York state from 3,000 to below 750, and the rate at which persons diagnosed with HIV progress to AIDS by 50%, by 2020.
To achieve these goals, the three-point plan looks to:
- Identify persons with HIV who remain undiagnosed and link them to health care.
- Link and retain persons diagnosed with HIV to health care and get them on anti-HIV therapy to maximize HIV viral load suppression so they remain healthy and prevent further transmission.
- Facilitate access to pre-exposure prophylaxis (PrEP) and non-occupational post-exposure prophylaxis (nPEP) for high-risk persons to keep them HIV negative.
While the inclusion of PrEP is noteworthy, with the focus on testing and getting people living with HIV on treatment, the plan is in line with similar federal and municipal HIV plans within the U.S.
What is exciting about the blueprint are the recommendations that fall under the section "4: Recommendations in support of decreasing new infections and disease progression." In it, one can hear the voice of community. The recommendations move from seeing the person living with HIV as a problem that needs to be monitored and controlled to a system that needs to change to ensure well-being for everyone.
These 10 recommendations turn the blueprint on its head and beg the question: What would the HIV movement look like if any of these were among the key three points?
1. Establish mechanisms for an HIV peer workforce.
Employment is an important facilitator of long-term adherence and viral suppression. Many people living with HIV have already re-entered the workforce or never left it. Others have a strong desire to work, but few opportunities are available to them. Development of a certified peer workforce that can provide Medicaid-reimbursable linkage, re-engagement, treatment adherence and retention in care services offers a high impact, cost-effective and sustainable model for delivering peer education and health navigation services.
Peers reflect the diversity of the people they are serving, and they are uniquely qualified by their shared experiences to assist HIV-positive consumers navigate various health care environments across the service continuum. Peers help to ensure that a consumer-centered approach is taken in service delivery and that access to culturally- and linguistically-appropriate interventions and health care services are more available. Integration of a peer-delivered model in the health care system requires the development a set of services that are optimally delivered by peers and a standardized training program that leads to a certification or designation accepted by service provider agencies and payers, and pays a living wage.
2. Ensure access to stable housing.
The greatest unmet need of people at risk for or living with HIV in New York state is housing. Research findings show that a lack of stable housing is a formidable barrier to HIV care and treatment effectiveness at each point in the HIV care continuum. People living with HIV who lack stable housing are more likely to delay HIV testing and entry into care; are more likely to experience discontinuous care; are less likely to be on antiretroviral therapy; and are less likely to achieve sustained viral suppression.
Studies show that housing assistance is an evidence-based HIV health intervention that is among the stronger predictors of improved HIV health and viral suppression. Expanded eligibility and new resources are necessary for the expansion of supportive housing opportunities for people living with HIV. Statewide protections such as limiting the percentage of income that can be required for rent in publicly funded housing programs should be instituted.
3. Pass the Gender Expression Non-Discrimination Act (GENDA).
All New Yorkers, including transgender New Yorkers, deserve to be treated fairly. The existing NYS Executive Order to protect transgender people in state work places is not far-reaching enough to ensure broad protections from stigma and discrimination. While some counties and municipalities have a transgender civil rights ordinance, they are inconsistent in their language and create inconsistent transgender civil rights coverage. Passage of the statewide transgender civil rights law, GENDA, would standardize protections and unify transgender civil rights protections in New York state. Currently, neither federal nor state law specifically ban discrimination based on gender identity. This lack of statewide protection impacts transgender persons as it relates to employment, housing, credit and public accommodations.
4. Implement the Compassionate Care Act in a way most likely to improve HIV viral suppression.
In June 2014, the New York state legislature passed a medical marijuana bill that makes medical cannabis available to patients with a number of serious illnesses, including HIV. The program gives broad discretion to the Commissioner of Health in implementing the program, which should be operational by January of 2016. Given the potential role that cannabis can play in adherence, eligible individuals living with HIV should have access to this medication.
5. Enact reforms to improve drug user health.
The Task Force proposes a number of recommendations that promote drug user health and elevates a public health approach to drug policy, particularly as it impacts HIV incidence, prevalence and care in New York state.
The recommendations include policy and legislative changes to decriminalize syringe possession; support expanded access to clean syringes for injection drug users through Peer Delivered Syringe Exchange (PDSE) in uncovered areas of the state, and to young injectors through drug treatment, medical care and mental health counseling; increase access to drug treatment such as methadone and buprenorphine within local and state correctional facilities; remove the advertising ban on the Expanded Syringe Access Program (ESAP) and remove the limit of syringes per transaction distributed through ESAP; and improve health systems to protect drug users from related conditions such as contracting viral hepatitis and overdose.
Recommendations were also made to expand opioid overdose prevention training and the availability of naloxone to all incarcerated individuals prior to release (permitted under current law); provide liability coverage for individuals who prescribe naloxone; and create safe injection facilities (this would require a legislative change to allow a Penal Code exemption).
Collectively, the proposals shift New York's criminal justice approach to drug use to a public health approach in an effort to reduce harm and end HIV.
6. Decriminalize condoms.
Reform is necessary to end the practice of confiscating and using condoms as evidence. Current law permits a person's possession of condoms to be offered as evidence of prostitution and trafficking-related offenses. Condoms may be confiscated as contraband, and the fact that a person is carrying condoms can be used as a basis for suspicion, arrest or prosecution for both types of offenses. As a result, individuals most in need, low-income women and LGBT people, are discouraged and deterred from carrying and using condoms.
The Criminal Procedure and Civil Practice Law and Rules should be amended to prohibit evidentiary use of condoms as probable cause for arrest, or in legal proceedings related to prostitution and trafficking offenses. A comprehensive statutory ban would also support outreach workers who work in these impacted communities from being criminally charged with promoting prostitution. Most people who carry condoms are not sex workers, but ensuring that everyone is able to carry and use condoms -- particularly if they engage in sex work -- reduces harm to individual health and harm to the general public.
7. Guarantee minors the right to consent to HIV and STI (sexually transmitted infection) treatment, diagnosis, prevention and prophylaxis, including sexual health-related immunization.
Competent minors, who are already able to consent to both STI and HIV testing without parental consent, also should be guaranteed the right to consent to HIV treatment and antiretroviral prophylaxis. A process or policy must be in place that allows for young adults and youth, including transgender youth, to gain access to HIV and STI treatment, as well as prevention services, such as PrEP and nPEP and immunization for HPV (human papillomavirus), without parental consent so that confidentiality is preserved.
Protections must be in place to ensure that insurance information, such as "explanation of benefits" (EOB) documents, are sent to the patient (i.e., young adult or minor) rather than to the policy holder (i.e., the parents) if that young person is using parental insurance to support HIV treatment or prevention services, such as antiretroviral prophylaxis services.
8. Expand Medicaid coverage to targeted populations.
To respond to the care needs of all individuals, the state should provide presumptive Medicaid coverage as a Medicaid waiver program to uninsured/underinsured New York state residents who are at high risk for HIV, including transgender persons, and persons newly diagnosed with HIV.
The benefit would be similar to the existing NYS Family Planning Benefits Program (FPBP), maintaining the FPBP's 223% federal poverty level (FPL) income guideline and three-month retroactivity to focus on those not already enrolled in care; cover sexual health services, such as PrEP, nPEP, STI screening and treatment, HIV management, hepatitis C testing and treatment, family planning services, and transgender transition services.
9. Achieve access to care for residents of rural, suburban and other areas of the state.
Long-term structural barriers to accessing care require specific accommodations to promote increased access, adherence and viral suppression among residents of rural, suburban and other communities across New York state. New York is a large state impacted by varied levels of care access and varied formal care structures.
As a result of this varied access, the effective use of telehealth, telemedicine, digital and electronic care coordination models should be instituted among care and support service providers. Transportation should be reimbursed (via stipend, gas card, Metrocard) and made accessible in a reasonable manner to consumers. Physician incentives should be applied to encourage physicians to practice in rural and other isolated communities of the state, and should include the removal of existing barriers for the reimbursement of telemedicine services.
Culturally sensitive modalities of care should be required when considering the needs of key, high-risk populations including MSM (men who have sex with men), MSM of color, transgender people, women of color, and injection drug users. These identified high-risk communities often report barriers to accessing care within their local community due to stigma and discrimination further provoked by a lack of anonymity.
10. Create single points of entry within all Local Social Services Districts (LSSDs) across New York state to essential benefits and services for low-income persons with HIV.
The greatest unmet needs of people living with HIV in New York state are housing, food and transportation. Research findings demonstrate that lack of stable housing is a formidable barrier to HIV care and treatment effectiveness at each point in the HIV care continuum and that housing assistance is an evidence-based health care intervention for homeless and unstably housed people with HIV that is linked to improved HIV health outcomes, including viral suppression. Adequate nutrition is also crucial for the management of HIV, and lack of transportation can prevent people with HIV from attending health care and social service appointments, especially in rural communities.
Expanding access to essential housing, food and transportation assistance for all HIV-positive New Yorkers and establishing a clear point of entry to these public benefits for people with HIV in each LSSD in the state will address the social drivers of the epidemic (and related health disparities) by ensuring that each income-eligible person with HIV is linked to critical enablers of effective HIV treatment.
Canadian born Theodore Kerr is a Brooklyn-based writer and organizer. He was the programs manager at Visual AIDS; currently, Kerr is doing graduate work at Union Theological Seminary.