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What Are the Implications of the Affordable Care Act for People with HIV?


The Affordable Care Act (ACA) has already brought about some important benefits for people living with HIV, including prohibition of lifetime insurance coverage limits and state programs to provide coverage for people with pre-existing conditions, according to a new report from the Kaiser Family Foundation (KFF). More changes are expected in 2014, including expanded Medicaid coverage, guaranteed availability of coverage regardless of health status, and subsidies for private health insurance premiums. 

Until recently, people with HIV and other health conditions were routinely denied individual health insurance coverage or had to pay very steep premiums. The ACA -- better known as "Obamacare" -- set in motion a large-scale overhaul of the U.S. health system. The law is scheduled to go into full effect in 2014, if not changed by the courts or repealed by opposition politicians.

The new KFF report explores how key provisions of the ACA will impact HIV positive people, as well as opportunities and challenges for using the law to improve HIV care. The act includes some major changes to Medicaid, which provides care for the largest proportion of people with HIV in the U.S. Many others rely on the Ryan White CARE Act, a federal grant program that serves as the "payer of last resort." Ryan White provides the federal portion of funding for state AIDS Drug Assistance Programs (ADAPs), which pay for HIV treatment.

A Supreme Court ruling in June upheld most provisions of the ACA -- including the individual mandate to carry insurance coverage -- but limited the federal government's ability to enforce the law's planned Medicaid expansion at the state level.

A recent article by Jen Kates in KFF's "Notes on Health Insurance and Reform" examined insurance access for people with HIV, including eligibility pathways prior to the ACA, during the period between the law's enactment and full implementation, and in 2014 and beyond.

The full report, available free online, lays out useful provisions of the law and when they will go into effect. Before 2014, the ACA provides Medicaid coverage for low-income childless adults, closes the Medicare "donut hole" drug coverage gap, prohibits lifetime coverage caps and rescissions in insurance policies, and establishes temporary state programs to provide insurance for people with pre-existing conditions. (Long-time community advocate Matt Sharp recently wrote about his struggle to obtain insurance as an HIV positive person after losing employer coverage.)

Young adults may now stay on their parents' insurance until age 26, and the new free prevention services for women include HIV testing. The ACA also allocated $30 million to the CDC for HIV prevention, surveillance, and testing, and provides funding to collect data about health disparities across populations.

By 2014 the ACA will expand Medicaid coverage (contingent upon state cooperation) and guarantee availability of coverage regardless of pre-existing conditions (at which point the temporary state programs will be phased out). It will establish private health insurance exchanges, mandate that most individuals carry insurance, and provide premium subsidies for those who cannot afford it.

Some challenges are expected as the ACA goes into effect. HIV positive people who live in states that refuse to expand Medicaid coverage may have incomes too low to qualify for private insurance subsidies. The fate of ADAP and other Ryan White-funded programs remains uncertain. Medicaid expansion could take financial pressure off some state ADAPs, according to the report, but others may have to fill even bigger gaps. Not surprisingly, there is considerable overlap between states that have expressed reluctance to expand Medicaid and those that have failed to fully fund their ADAP programs.

Another important issue is the fate of undocumented immigrants, who currently may receive Ryan White services but are excluded from the ACA.

It will be important to consider a new role for the Ryan White program in the post-ACA world, the report authors write. "First established in 1990 as an emergency response to the HIV epidemic, the program has grown into a critical part of the HIV health care delivery system, and the HIV response overall has benefitted from the program’s investments in community infrastructure and building HIV-focused institutions and capacity."

The Ryan White act is due for reauthorization in 2013, providing an opportunity to consider how it "can assist people with HIV in their transition to new coverage as well as its continued role in providing care to those who have limited coverage or remain ineligible for health coverage in the future," they continue. "Maintaining the Ryan White program’s flexibility and infrastructure will therefore be important to ensure that the current system of HIV care is not prematurely weakened as the ACA is implemented."

"The Affordable Care Act has already led to improvements in access to and quality of care for people living with HIV and, when fully implemented in 2014, is expected to significantly expand access even further," the report concludes.

"At the same time, there are several outstanding questions regarding the implementation of the ACA, and decisions that have yet to be made by the federal government and the states will affect its ultimate reach," it continues. "There are also key opportunities for working to ensure that new systems of care will include high quality HIV standards for realizing the potential of the ACA to be a 'game changer' in reducing the burden of the HIV epidemic in the United States."



JS Crowley and J Kates. The Affordable Care Act, the Supreme Court, and HIV: What are the Implications? Kaiser Family Foundation report. September 2012.

J Kates. How the ACA Changes Pathways to Insurance Coverage for People with HIV. Kaiser Family Foundation Notes on Health Insurance and Reform. September 18, 2012.