Making Health Reform Work for People Living with HIV/AIDS

By Amy Killelea October 10, 2012

The closing plenary at the 2012 U.S. Conference on AIDS tackled the topic of the Patient Protection and Affordable Care Act (ACA). I joined my colleagues Anne Donnelly (Project Inform), John Peller (AIDS Foundation of Chicago), and Celeste Davis (Harvard Law School Center for Health Law and Policy Innovation) to discuss the role that state and local HIV providers, advocates, and consumers must play to ensure that the ACA is implemented in ways that increase HIV prevention, care, and treatment.

The ACA has been the law of the land for over two years, and there are two things that are abundantly clear. First, the ACA – if fully implemented – is still the game changer that the HIV community fought for in terms of its potential to reduce new infections, increase access to care and treatment, and reduce health disparities. Second, there is no road map for implementation. Unless HIV providers, advocates, and consumers are actively involved in every step of implementation, we as a community will miss an important opportunity to use the ACA to fix our broken health care system in ways that work for people living with HIV.

Health Reform at the State and Local Level

In the coming weeks and months, the most important ACA advocacy imperatives at the state and local levels will be to ensure:

  1. Every state expands Medicaid;
  2. Benefits requirements for both Medicaid and private insurance meet HIV care and treatment needs;
  3. Exchanges are designed and implemented in ways that work for people living with HIV; and,
  4. Expertise and models of care HIV providers and organizations have built over the past thirty years are preserved going forward.

State Medicaid Expansions

The first advocacy imperative is arguably the most challenging. The Supreme Court’s June 2012 decision – while upholding the entire ACA – limits the ability of the federal government to enforce state compliance with the Medicaid expansion. This means that there is a real question as to when and if all states will expand their programs to people with incomes up to 133 percent of the federal poverty level (FPL). This is a significant challenge for the HIV community, as many currently uninsured people living with HIV have very low incomes and will qualify for Medicaid if their state chooses to expand. HIV advocates are working in coalition with a range of other stakeholders to make the public health case, the individual health case, and the economic case for why their states must expand Medicaid in 2014.

Health Reform Benefits Packages

In addition to the Medicaid expansion, state decisions about what will actually be covered under new insurance options are also incredibly important to ensure that increased access to insurance translates to increased access to care. There is a short window of opportunity for deciding the benefits that will be available for both private insurance sold in the individual and small group markets in 2014 and Medicaid for the newly eligible population. Unless HIV providers, advocates, and consumers are involved in shaping these benefits packages, they may not meet HIV care and treatment needs.

State Health Insurance Exchanges

State advocacy is also needed to ensure that exchanges – the new marketplaces where in 2014 individuals will be able to compare and purchase private insurance – include HIV providers and systems of care and are designed in ways that are accessible to people living with HIV/AIDS (PLWHA).

Making the ACA work for PLHWA

Advocates in both California and Illinois offer helpful lessons and strategies for how to seek out health reform decision-makers and ensure that the needs and concerns of people living with HIV/AIDS are voiced. State advocacy initiatives have also included a call to action for local providers to assess the impact the ACA will have on their clients and to begin preparing for a changing role once the ACA is fully implemented. Resources, such as HIV Health Reform, provide an information clearinghouse to state advocates to help them take up this call to action. Over the coming weeks and months this information sharing will be crucial to ensure that the ACA is implemented in ways that work for people living HIV.

Though not a focus of the plenary, the ACA’s impact on access to care for people living with viral hepatitis will also be significant. As we work to ensure that critical HIV/AIDS prevention, care, and treatment services are accessible through new public and private insurance expansions and health infrastructure investments, we must also ensure that these reforms ensure access to viral hepatitis services.

To learn more about health reform and its impact on people living with HIV/AIDS and viral hepatitis, check out the Health Reform Resources at

How is your state working to ensure implementation of the ACA works for PLWHA? Let us know by leaving a comment below.