This week, thousands of HIV service providers, policymakers, advocates, and people with HIV will arrive in Las Vegas for the U.S. Conference on AIDS. As we enter the fourth decade of this disease in America, there are many reasons for us to be hopeful. Expanding HIV testing, ensuring early, consistent access to treatment, and establishing new efforts to prevent the spread of HIV, including pre-exposure prophylaxis (PrEP), have the potential to not only reduce HIV transmission, but could bring us closer to ending the epidemic.
Moreover, the Obama Administration has demonstrated an admirable commitment to effectively addressing the epidemic in the U.S. and beyond. Among the most crucial of those accomplishments was the passage of the Affordable Care Act (ACA), which has the potential to transform access to health and services for those at risk for HIV in the U.S.
There are distinct policy differences between Democrats and Republicans, including each party’s presidential candidate. The results of the November elections, not only for President but also for Congress, will have a profound impact on care and services for persons with and at risk for HIV. Indeed, with the ACA’s very existence, and funding for a host of domestic HIV programs hanging in the balance, people with HIV, and those who care about HIV prevention and care, cannot afford to sit out this election.
To explain how the ACA offers so many benefits for Americans with HIV, several misconceptions about HIV and AIDS first need to be addressed. First, HIV is not just a young person’s disease. As a campaign created by my organization, the AIDS Community Research Initiative of America (ACRIA), advises: “Age is Not a Condom.” Older people have sex and, just like others, are at risk for HIV unless they protect themselves. One in every six new HIV diagnoses is of an adult age 50 or older. And thanks to the antiretroviral drugs that have made HIV a manageable condition for many, those with HIV are living longer lives; indeed, many are likely to see old age. As a result, however, HIV is rarely the sole health condition that these men and women experience. In a study conducted by ACRIA, we found that these older adults, on average, manage three other illnesses in addition to HIV, which often includes bearing the accompanying medical costs.
Nor is HIV a disease largely confined to white gay men who can afford the medications they need. That's a stereotype that has eroded over the years, but remains too pervasive. When one looks at all ages and demographics, our current approach to delivering health care and services is not working for far too many people with HIV in this country. Americans with HIV are disproportionately likely to be unemployed or working in low-wage jobs—and in an employment-based insurance system, that means they are uninsured.
How, then, will the ACA do much good for the health of those with HIV? For decades, many insurers were able to deny care to patients with HIV on the basis of preexisting conditions, or to charge astronomical fees for the same reason. Thanks to ACA, that is no longer true. By 2014 insurance companies won’t be able to charge higher rates based on gender, illness, or institute annual or lifetime spending caps. And as of January 2014, workers earning between $15,000 and $44,000 per year will be eligible for subsidies to buy private health insurance through state-based exchanges.
But the answer also has much to do with the ACA’s expansion of Medicaid and improvements to Medicare. The ACA significantly expands Medicare’s Part D prescription drug benefit, making HIV medications far more affordable. The infamous “donut hole,” while not gone, has at least been reduced in size; it now covers 50% of the cost of name-brand medications, and money spent on drugs through the state-level AIDS Drug Assistance Programs (ADAP), created by the Ryan White Care Act in 1990 counts as out-of-pocket expenses and thus toward exiting the hole.
And beginning in 2014, nearly all very low-income households will have access to Medicaid, presuming that most states agree to participate. The Kaiser Family Foundation has found that Medicaid already accounts for over half of all federal HIV spending. The same Kaiser study also found that patients with HIV on Medicaid have a distinct demographic profile. As of 2007, half were black, compared to 26% of Medicaid patients without HIV; 48% were age 45-64, compared to only 13% without HIV; and 57% were male—the inverse of the non-HIV figures. They also have distinct needs; prescription drugs were the largest share of spending for those with HIV, but the smallest share of spending for those without it. Currently, only those who are debilitatingly sick qualify for Medicaid. Come 2014, most people earning less than $14,000 per year will be eligible and able to get Medicaid assistance for the treatment they need, regardless of their current health or disability status.
There are obstacles ahead. While the recent Supreme Court ruling on the ACA laudably upheld most of its provisions, Chief Justice Roberts’ opinion effectively opened the door for states to opt out of the Medicaid expansion, meaning that some states will deny expanded care to many HIV-positive people. Moreover, many regulations and details remain to be worked out by the federal government, including the “essential health benefits” and drug coverage under both the Medicaid expansion and the state-based insurance exchanges.
But the facts are unambiguous. The ACA will not address every healthcare problem that Americans with HIV experience. But it is by far the greatest step forward towards that goal since the Ryan White Act was enacted in 1990. As we approach the election, all Americans with HIV— and those concerned about their health—should remain mindful of the stakes and the choice we have on November 6.