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Healthcare Reform: The Implications for People with HIV


Implementation of the Patient Protection and Affordable Care Act is largely good news for patients with HIV, many of whom have been denied coverage under preexisting condition clauses. However, some questions and some gaps in coverage remain to be addressed.

Starting January 1, 2014, because of implementation of the Patient Protection and Affordable Care Act (ACA), an estimated 30 million currently uninsured Americans will have access to affordable health insurance and subsidies to help them pay for it. Most important, insurance companies will not be able to deny coverage because of preexisting conditions.

That  will particularly benefit people with HIV, a quarter of whom do not have health insurance (see Figure at left), says Jennifer Kates, PhD, vice president and director of Global Health & HIV Policy at the Kaiser Family Foundation. One of their challenges has been exclusion from the individual market because of preexisting condition policies. 

Most rely on the  Ryan White HIV/AIDS Program, the nation’s safety net program for people with HIV who are uninsured or underinsured.2 Even those who are insured still rely on Ryan White to cover costs their insurance does not.

However, the Ryan White program is not designed as an insurance plan. It does not provide a basic set of benefits, its funding is subject to the whims of Congress and state legislatures, and the amount of funding rarely matches the need. This results in long waiting lists for the program’s AIDS Drug Assistant Program (ADAP).2 Although those waiting lists were virtually eliminated in the past few years thanks to emergency funding, this $35 million was not included in the continuing resolution recently passed by Congress. “There are now concerns that the waiting lists could come back,” Kates said.

Several other positive provisions within the ACA for people with HIV include:

•    Closing a “donut hole” in Medicare. Twelve percent of people with HIV are covered under Medicare, primarily because they are disabled. Under Medicare Part D, which provides prescription coverage, beneficiaries pay 25% of the drug cost up to $2,970 in overall drug costs. Then they hit the so-called “donut hole,” during which they pay about half the cost of branded drugs and about 80% of the cost of generics. When they incur a total of $6,955 in drug costs for 2013, catastrophic coverage kicks in and covers 95%.

Previous rules did not allow drugs covered under ADAP to count towards total drug costs in the donut hole.  So people with HIV rarely qualified for catastrophic coverage, no matter how much they spent. The ACA does away with that provision and phases out the donut hole by 2020. In the meantime, it heavily subsidizes the cost of drugs during the coverage gap.

•    Medicaid changes. As the Figure shows, 42% of people with HIV are covered under state Medicaid programs. However, few states cover childless adults. The ACA provides funding for states to expand their Medicaid program to cover citizens and legal residents up to 138% of the federal poverty level, but it is up to the states to agree to the expansion. So far, 27 governors have said they support expansion, although it’s not clear how many states will follow through. Nonetheless, says Kates, “This is a  very, very big change,”  

Still, it brings with it one potential problem. In states that do not increase Medicaid eligibility, people with HIV may find themselves locked out of that program yet may have incomes too low for the subsidies available to help them buy individual health insurance. Those subsidies are only available to people with incomes between 100% and 133% of the federal poverty level.

•    Health insurance exchanges. For those who don’t quality for either Medicaid or Medicare, the implementation of state-based health insurance exchanges (online “stores” where individuals can compare and purchase health insurance) provides the greatest benefit for those with HIV, said Kates. “Now there will be a market where people can shop and get coverage and compare coverage and, based on income, may also be able to get subsidies.”

•    Essential health benefits. The ACA requires that all health insurance plans include a core set of 10 benefits, including ambulatory care, emergency services, hospitalization, maternity and newborn care, mental health and substance use disorder services, prescription drugs, rehabilitation services and devices, laboratory services, preventive and wellness services, and chronic disease management.

While the mandated coverage of prescription drugs is critical, questions remain regarding specific coverage of antiretroviral therapy (ART), Kates observed. Guidelines are expected to require coverage for at least one drug in every class, but people cocktail regimens for HIV often include more than one medication from the same class.

•    Consumer protections. Beginning in 2014, health plans cannot deny health insurance or individually rate premiums based on preexisting conditions like HIV. Nor can they limit the dollar amount of annual or lifetime coverage. For people with high-cost conditions like HIV, this is a significant benefit.

One big question in the ACA implementation, Kates said, is the future of the Ryan White program, whose current authorization is set to expire at the end of September. A report [http://www.kff.org/hivaids/8431.cfm] she co-authored (Updating the Ryan White HIV/AIDS Program For A New Era) notes that there is some question as to whether the program will be necessary, or whether the same level of funding is warranted, after the ACA is implemented.

Most Ryan White recipients already have some insurance coverage; they need to program to supplements limits in that coverage and help with co-payments. That is not expected to change, she notes. Financial pressure on Ryan White programs should ease in states that expand Medicaid coverage, but those states will still need to provide some funding to cover coinsurance and copayments. States that do not expand Medicaid will continue to see ADAP waiting list and a shortage of Ryan White funding.

Despite expanded insurance coverage, current efforts to get more people with HIV tested and into treatment will put more pressure on the Ryan White program. Its funding is still critical in Massachusetts, which implemented universal health coverage a decade ago.

The Implications for Providers

Many physicians who see HIV patients are nervous about how the ACA will impact their patients and the Ryan White program, Kates said. They should anticipate that many of their patients will experience changes in coverage, but that they may still have a gap between the coverage they need and the coverage they receive. “Physicians have to watch for any disruptions in care,” she said. It is important that they “troubleshoot” to prevent such disruptions in ART, which can contribute to viral resistance.

Another challenge will be the anticipated shortage of primary care physicians as 30 million previously uninsured people flood the market. The ACA increases payments to primary care physicians who see Medicaid patients, but only for 2013 and 2014. A proposed rule would also define primary care doctors to include primary care subspecialists, who often provide comprehensive care for people with HIV. Given the coming shortage, said Kates, the message is to get as many people into care as possible and “to look at the workforce and how to maintain and bolster that workforce.”



1. Institute of Medicine. Data Systems for Monitoring HIV Care; Institute of Medicine. Washington, DC: The National Academies Press; 2012.
2. Crowley JS, Kates J. The Affordable Care Act, the Supreme Court, and HIV: What Are the Implications?, September 2012.

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