A year and a half ago, on World AIDS Day 2011, President Obama committed the U.S. to getting "to zero" in the AIDS epidemic. This reflected earlier statements from Secretary of State Hilary Clinton, who called for the creation of an "AIDS-free generation" and said, "this goal would have been unimaginable just a few years ago." These statements also reflect the commitment of the U.S. to increase access to treatment and reduce new infection rates through the first National HIV/AIDS Strategy that had been adopted in 2010.
New evidence that using HIV drugs earlier can not only help people with HIV live longer and healthier lives but also help prevent new infections has influenced policy makers. These studies show that, in theory, the epidemic could be ended if enough people with HIV can be found, linked to treatment, and helped to lower their viral load.
On top of this commitment there has also been legislative action that could expand access to treatment and care for many people with HIV. Beginning in 2014, states will be allowed to expand Medicaid coverage to people earning below 138% of the federal poverty level (about $15,000 for a single person).
Interestingly, Medicaid expansion under the Affordable Care Act (ACA, also known as "Obamacare") also accomplishes one of the earliest goals of HIV treatment advocates. Previously, Medicaid required that people have low incomes and a disability. This was a problem for people with HIV, since Medicaid required an AIDS diagnosis for access to the very drugs that can prevent AIDS. The health care reform law ends this foolish requirement.
The law also requires changes to the private insurance market. It creates an insurance marketplace in each state that allows comparison shopping of insurance plans. It eliminates exclusions on pre-existing conditions like HIV, and prohibits yearly and lifetime caps on benefits. It requires people who are not eligible for Medicaid to purchase private insurance, but provides subsidies to help people who earn less than 400% of the federal poverty level do so.
In short, health care reform has the potential to allow tens of thousands of people with HIV to gain access to HIV treatment and care, particularly through Medicaid. It eliminates Medicaid's main barrier to HIV treatment and creates much greater access to the private insurance market for people with HIV.
These developments also come with strong incentives to find ways to prevent new infections. People with HIV are living longer and healthier lives, so their number has grown to more than 1.2 million in the U.S. As a result, the cost of their care has also grown. Dr. David Holtgrave, an expert in HIV funding and prevention from Johns Hopkins University, estimates that each case of HIV costs $355,000 just for treatment over a lifetime. As a result, the cost of the epidemic continues to expand. For Medicaid alone, funding has risen from just $10 million in spending in 1983 to over $6 billion in 2012.
The goal of ending the epidemic is an extremely strong position. The President verbally committed to ending the epidemic and created a plan with strong goals that move in that direction. The ACA creates real access to treatment and eliminates barriers to care. New science shows that we can begin to prevent new cases of HIV (and lower costs) by strengthening treatment capacity. What could possibly go wrong?
Unfortunately, there has not been a similar level of commitment in Congress. The political goals of conservatives clash with those of the President over the level of government involvement in public life and the amount of overall federal spending. As a result there has been direct opposition to implementation of the ACA by conservatives. The Republican-controlled House of Representatives has voted to repeal the ACA almost 40 times. Additionally, the Supreme Court ruling on the ACA made Medicaid expansion optional, and nearly 20 states will likely decide not to expand. Many people with HIV in those states will continue to rely on other programs for treatment, notably the Ryan White Program.
At the same time there has been a strong effort to cut all government spending. Though our ongoing budget crisis had resulted in cuts to other programs, HIV research, treatment, and prevention had generally been flat-funded. This is because HIV is a policy priority of the President and both parties.
But this year is different. Under the Budget Control Act of 2011, Congress and the President agreed to automatic spending cuts to reduce the federal deficit by $1.2 trillion over ten years. The cuts, known as "sequestration," would be split equally between defense and non-defense spending. They were supposed to be so tough on both parties' priorities that Congress and the administration would be forced to negotiate a better deal.
Unfortunately, that did not happen and $26 billion in non-defense cuts were implemented, including much HIV treatment, prevention, and research. This means about 5% cuts for all HIV funding. Secretary of Health and Human Services Kathleen Sebelius has estimated that prevention cuts under sequestration would result in approximately 424,000 fewer HIV tests by health departments.
The Ryan White Program, the largest program for HIV care and treatment, is not immune from these cuts. In 2013 the program lost about $144 million out of a total of $2.4 billion. This is a real problem, since the program covers HIV care for at least half a million people every year who don't have health insurance. It also covers support services such as transportation, nutrition, legal help, translation services, and case management. And it contains a billion dollar program called the AIDS Drug Assistance Program (ADAP) that funds drugs for people who don't have insurance or Medicaid. Secretary Sebelius has estimated that cuts to ADAP would result in 7,400 fewer people having access to HIV drugs. Clearly this is a public health issue that the community must immediately address.
Preserving Ryan White
The Ryan White Program is the most prominent legislative accomplishment of the AIDS community. It is named as a living memorial to Ryan White, a teen who became a celebrity as he battled HIV stigma.
The community has argued that Ryan White must be stable while people make the transition to other coverage through the ACA. Unfortunately, it is currently up for its regular review by Congress in a process known as reauthorization. Given the Affordable Care Act, the role of Ryan White has come into question. Some Members of Congress have asked whether Ryan White funding, particularly drug funding, duplicates funding in the ACA.
It is true that both Ryan White and the ACA do cover medical services, drugs, and support services. But Ryan White picks up where the ACA leaves off. In short, it will help to address gaps in care, ensure that care remains affordable, and provide HIV services to people left out of health care reform. It already interacts with Medicaid and private insurance in that way. About 75% of people who use Ryan White services have access to some type of health insurance.
Massachusetts, which expanded Medicaid and access to private insurance over the last ten years, is a good example. As reforms were implemented, some Ryan White resources were moved to cover premiums and co-pays and to cover other medical and support services not covered by Medicaid or private insurance. In fact, Massachusetts continues to use its entire share of Ryan White funding. According to the Treatment Access Expansion Project (TAEP), new HIV diagnoses fell by 46% in Massachusetts between 2006 and 2011. TAEP and others attribute this result at least in part to health care reform's expansion of coverage in Massachusetts.
Some legislators ask why HIV programs should be singled out to have extra coverage for insurance premiums, deductibles, and co-pays when other diseases do not. The community's primary answer is that HIV is an infectious disease with deadly consequences. Ensuring that people with HIV have access to treatment is a way to prevent its spread. The U.S. must remove as many barriers to HIV prevention and treatment services as possible.
The reauthorization of the Ryan White program has been seen as a sign of the HIV community's ability to exert leadership and for Congress to convey its support. Many people with HIV and others who work in the HIV community were concerned when the administration said that the next reauthorization would be delayed past September 30 (the date that the current authorization runs out) and even to the end of the year. Fortunately, the program will continue to exist without a reauthorization and will continue to be funded. And there continues to be relatively strong support from both Republicans and Democrats.
The current political climate is one of the reasons for the delay. It's difficult even for the most determined Congresspeople to move legislation through this highly divided Congress. The most recent Congressional session passed fewer bills than any Congress since the 1940s, and the current Congress may pass even fewer.
Advocates are also concerned about the turnover in Congress since the last reauthorization. In fact, 165 new members of the House of Representatives (38%) and 25 new Senators (25%) have been elected since the last reauthorization in 2009. Many of these new members do not see HIV as one of their top issues, and the community must make the case that Ryan White must be kept intact as the ACA is implemented.
The community is working hard to create a future vision of Ryan White as a public health measure that should be integrated into the ACA. Members of Congress must understand that merely being able to gain access to treatment does not mean we will be able to find more people with HIV and help them obtain treatment. Providing support and enabling people to make educated decisions about HIV will be more important than ever.
However unlikely Congress is to adopt it, the President's budget would be a good blueprint. It states, "... as the number of insured RW clients increase, RW grantees will more easily be able to use a greater percentage of their grants to support services not covered by public or private insurance but which are essential to getting people living with HIV into care and on medications that suppress the virus and help prevent the spread of the epidemic."
The vision of reaching the goals outlined by the President -- of getting "to zero" and to "an AIDS-free generation" -- is the best opportunity to move forward. Ryan White continues to have strong support from both parties. It will be needed both in states that expand Medicaid and in those that don't. The community must remain focused on maintaining and expanding HIV prevention, treatment, and research; ensuring Medicaid and private insurance expansion; maintaining Ryan White while the ACA is implemented; providing an imaginative vision of the future of Ryan White; and working to commit Congress to ending of the epidemic.
William McColl is Director of Political Affairs at AIDS United.