More than 25 years ago, a young boy named Ryan White stole the hearts and minds of Americans everywhere when he was diagnosed with a rare and mysterious disease called AIDS. A lot has changed since the disease claimed the lives of Ryan and countless others. There are now more than 1.1 million people living with HIV or AIDS in the U.S. today — the highest level of people ever in our country living with HIV. That’s largely due to both people living longer and the level of new infections, roughly around 50,000, each year.
Fortunately today with antiretroviral medications, people with HIV can live relatively healthy lives if they have access to and remain in care and on treatment. We know now that HIV treatment is undeniably also HIV prevention. When a person is on HIV or AIDS drugs their virus is suppressed and it prevents HIV transmission to others. Due to the positive effects of treatment, scientists now believe that we have the ability and knowledge to end AIDS if people are first diagnosed through testing and then linked to and retained in care and treatment. Sounds simple enough, but the truth is we still have a long way to go.
Looking at the numbers, we have far to go in turning the scientists’ vision of ending AIDS into a reality. In fact, more than 200,000 people in the U.S. are unaware they are HIV positive, but even after they are aware of their HIV status, 66 percent of those infected are linked to care. Digging deeper, the numbers get worse: only 37 percent are retained in care, 33 percent prescribed antiretroviral treatment, and only a mere 25 percent ever achieve the ultimate goal of viral suppression.
In order to get closer to ending AIDS, we must continue our country’s commitment to adequately funding those efforts, like the Ryan White Program, which we know is playing an instrumental role in helping people with HIV live relatively healthy lives and reducing the number of new infections. The Ryan White HIV/AIDS Program provides medical care, medications and essential services to low-income, uninsured and underinsured people with HIV and AIDS. It has often being referred to as “the payer of last resort.” It is the safety net that provides treatment to those who, without the program, would never be able to afford the life-saving medications available today.
Today, with the implementation of health care reform, the Affordable Care Act, some people who previously had no coverage other than from Ryan White can now get coverage from expanded Medicaid, if they qualify, or from the marketplace. However, Medicaid expansion is a state option and only half the states are moving forward with the expansion at this time. In those states, where many of the HIV positive individuals in the Ryan White Program live, the principal provider of care and treatment is the Ryan White HIV/AIDS Program. Even in the age of the ACA, it is essential for these individuals that we continue to fund this critical link to care.
We are also learning that even when people move to the marketplace and start receiving coverage, there are associated costs in the form of monthly premiums, co-pays for drugs, labs and office visits. We are seeing more of co-insurance, where a beneficiary is responsible for paying a certain percentage — 30, 40 or even 50 percent — of the drug cost. While there are out of pocket limits, these costs quickly add up. Fortunately, the Ryan White Program, particularly its AIDS Drug Assistance Program, can help with these costs.
In Massachusetts, a state that had an early Medicaid expansion and health care reform system, they are using their ADAP dollars for funding on premium support and co-pays and serving almost twice as many people, with about the same amount of money. This early example shows that even with health care reform, the need for their Ryan White funding is still great and must be maintained.
The bottom line: the Ryan White Program continues to make a difference in the lives of hundreds of thousands of Americans and is still needed now and in the future, even as we implement health care reform.
Ryan could have never dreamed of the success of treatments and of the critical importance of the program that bears his name to the hundreds of thousands of people living with HIV and AIDS in the United States. Over the years it has changed as science and the times have progressed, but now we are at the juncture of another change. We know the positive benefits of bringing people into care and treatment and now we have the expanded coverage opportunities under the ACA. No matter how the Ryan White Program changes in the future due to the implementation of health care reform, its funding must be continued and maintained for those currently receiving services and the growing number of people who will not gain coverage through health care reform.
Jeanne White-Ginder is a national HIV/AIDS advocate and the mother of Ryan White, the namesake of the HIV/AIDS program. Michael Ruppal is the executive director of The AIDS Institute.