NAPWA’s 2011 Public Policy Agenda

By Matt Lesieur, NAPWA Vice President of Public Policy

• HIV Criminalization
• Implementation of the Patient Protection and Affordable Care Act
• Appropriations for Domestic HIV Programs
• National Institutes of Health (NIH) Funding for HIV Preventive and Therapeutic Vaccines and a Cure
• Reauthorization of the Housing Opportunities for People with AIDS (HOPWA) Program
• Implementation of the National HIV/AIDS Strategy
• Social Security Disability Status for People with HIV
• HIV Stigma
• HIV Education in Public Schools
• AIDSWatch 2011
• Other

Below is the National Association of People with AIDS (NAPWA) public policy agenda for the calendar year 2011. This agenda is not set in stone and is subject to change in response to the changing Federal and national landscape and the changing needs of the HIV community and persons living with HIV.

Founded in 1983, NAPWA is the first coalition of people living with HIV/AIDS in the world as well as the oldest AIDS organization in the United States. NAPWA is the trusted, independent voice of the more than one million people living with HIV/AIDS in America. NAPWA remains committed that people with HIV and AIDS are neither silent victims nor passive patients as our lives are challenged. We have had a critical impact on the nation’s policies affecting us and changed the way policy makers work with all people affected by a disability or disease. We hope to do so until the last day of this pandemic.

HIV Criminalization

In state legislatures across the country, legislation is being introduced and laws are being enacted that are specifically designed to criminalize the transmission of HIV infection. The deliberate and targeted criminalization of HIV transmission actually impedes HIV prevention efforts by discouraging individuals from learning their HIV status, increases HIV stigma, and criminalizes individuals living with HIV. In addition, the application of criminal law has been applied egregiously, involving numerous cases of prosecution that had no relationship to risk factors for HIV or anyone actually being infected. Individuals have gone to prison in cases where no transmission of HIV actually took place.

In the small number of cases involving intentional transmission of HIV, and where transmission actually occurred in those instances, the application of criminal law might be justified. NAPWA fully supports the notion that individuals, including individuals living with HIV, should take responsibility for their actions and do everything they can to protect their partners. However, wider application of criminal law is problematic from public health and human rights perspectives.

From a public health perspective, applying criminal law to cases not involving intent can actually impede HIV prevention. It suggests the responsibility for prevention lies solely with people living with HIV, and dilutes the public health message that everyone should practice safe behaviors regardless of their HIV status. Applying criminal law broadly could discourage people from getting tested, being diagnosed and disclosing to their partners, as ignorance of status may become the best defense to a criminal prosecution. It may also create distrust in relationships with health service professionals and researchers and impede the provision of quality care, as people may fear information they provide regarding their HIV status may be used against them in court.

The criminalization of HIV transmission also tends to increase discrimination against people living with HIV, and other stigmatized groups such as migrants, injecting drug users, sex workers and men who have sex with men. 

NAPWA recommends the following:

·   If a legislative approach is deemed necessary, public health law should be used instead of criminal law, as it has greater flexibility to take individual circumstances into account and to balance the rights of the individual with public health protection.

·   Criminal prosecution should only be used where public health interventions may fail, such as in the case of intentional transmission of HIV. Use of general criminal legislation is recommended over the development of HIV-specific legislation.

Implementation of the Patient Protection and Affordable Care Act

For far too long, access to HIV primary medical care for persons living with HIV was entirely dependent upon where an individual lived in the United States. Individuals in states such as New York and Massachusetts often have far greater access to care than individuals in many other states. Passage of the Patient Protection and Affordable Care Act was an important milestone in the effort to ensure that all persons living with HIV have access to HIV medical care, including HIV medications, and to help close the gap in access based on residency. Now that the Affordable Care Act is law, efforts must focus on implementation and application of the new law.

The HIV community must be engaged in decisions on the composition of minimum essential health benefits package for those newly eligible for Medicaid and those insured through state-based insurance exchanges. The make-up of services available will be critical for persons living with HIV/AIDS and HIV service providers. The HIV community must be actively engaged in ensuring that a full complement of services is mandated, meeting the need of persons living with HIV/AIDS. Some areas where NAPWA will be paying particular attention are:

·   Will the Federal government and state governments provide adequate oversight over insurance companies to ensure that PLWHAs receive full access to the services they need without unnecessary barriers?

·   Will enough resources be dedicated to increasing the HIV capacity of Federally qualified health centers and ensuring there are enough HIV specialists meet future needs?

·   Is the current HIV service delivery system preparing itself for the changing environment? Are HIV service providers prepared to accept reimbursement for services through Medicaid and private insurance companies in the exchanges and to meet the changes in performance, record keeping, information technology and billing, among others, this will require? Will consumers be left without access to services because their local AIDS service provider cannot cope in the new health care environment?

·   Will reimbursement from Medicaid, Medicare and private insurance be sufficient to meet the costs of care? Will changes in reimbursement such as bundled payments, pay-for-performance, capitation payments, and the like ensure that even the most difficult to treat PLWHAs with other complicating factors receive the care they need?

·   Will Ryan White continue to pick up those services not included in the package?

Where possible, NAPWA will work with state-based HIV advocates to carefully monitor the steps taken by state government to implement provisions in the law. California has already taken significant legislative steps necessary to prepare for the new law. Other states, such as New York, have already announced a Health Care Reform Advisory Committee or something similar. The state will play a major role in the implementation of the new law and will have a very important and ongoing role in how residents of their state access benefits. While much attention has been paid to actions at the Federal level, state level advocacy will prove just as critical in the months and years ahead.

   Ryan White, the Affordable Care Act, and Challenges for the HIV Community

While the Patient Protection and Affordable Care Act is clearly a hugely important program for persons living with HIV/AIDS, the law will have an impact on the Ryan White program and other HIV-specific programs. Of particular importance, as thousands of individuals living with HIV/AIDS transition into Medicaid and the insurance exchanges, Ryan White must be prepared to carefully monitor where new gaps in services will appear and where older service priorities will no longer be necessary. The transfer of individuals into other funding streams to pay for medical care should free up Ryan White resources to address other unmet needs. Planning Councils, state agencies, the Federal government and other Ryan White providers must be ready to address major changes in the funding environment. Providers must also be prepared for significant shifts in Ryan White resources as needs change, especially starting in 2014.

Implementation of the new law is an ongoing process, with countless regulations being issued almost weekly by the Federal government. States will also play a major role in the implementation of the new law. These changes will ultimately be of tremendous value to the HIV community in the years to come, but everyone must pay careful attention to the myriad of challenges, both good and bad, that will occur as a result of these shifts.

   Changes to the Patient Protection and Affordable Care Act

Even with passage of this historic legislation, NAPWA would like to see the following improvements to health care reform:

·   Creation of public/government run insurance option (single payer would be better, but we are realistic about its likelihood anytime soon);

·   Mandated minimum reimbursement levels for Medicaid and private insurance to at least match those of Medicare. Ensure enhanced reimbursement for specialty services such as HIV primary medical care, infectious disease physicians, etc.;

·   Improvement in Medicaid minimum benefits package, such as inclusion of pharmaceuticals;

·   Inclusion of all residents of the United States in Medicaid and exchanges, regardless of citizenship status; and

·   Automatic increases in the Federal Medicaid matching rate (FMAP) during major economic downturns.

Appropriations for Domestic HIV Programs

Federal funding to combat the HIV epidemic has been lacking and is not keeping pace with the care, treatment and service needs of the growing number of people living with HIV and AIDS in the United States. The HIV community has suffered through eight years of neglect in funding for the domestic HIV portfolio during the Bush Administration. Flat funding, coupled with medical inflation and over 56,000 new HIV infections a year, has resulted in a HIV service delivery system that is unable to adequately meet demand. The major crisis with the AIDS Drug Assistance Program is a mirror of the stress placed on the system to meet demand based on current resources. We need Congress and the President to increase funding of HIV/AIDS programs.

NAPWA will support the Federal AIDS Policy Partnership (FAPP) AIDS Budget and Appropriations Coalition appropriations request for domestic HIV/AIDS programs and urge Congress to improve funding for HIV programs.

   Funding for the AIDS Drug Assistance Program

With states having waiting lists for individuals to enroll in the ADAP program and other states enacting other cost containment measures that reduce access (such as smaller formularies and lowering eligibility), the ADAP program is in dire need of additional resources. The economic downturn, coupled with states facing severe budget crises, has resulted in more individuals accessing ADAP while resources have shrunk or not kept pace with demand. While NAPWA agrees that states do have responsibility to adequately cover the residents of their own state, absent local action the Federal government also has a responsibility to the whole nation. Individuals who need HIV medications should not be left without access because the states point to the feds for assistance and the feds in turn point to the states to support the program. This attempt to “pass the buck” must end and a solution must be found to ensure all individuals have access to the medications they need.

Areas where NAPWA will advocate for increased funding to help address demand are: