In 1990 the U.S. Congress honored a young man from Kokomo, Indiana, who died of AIDS by naming a program after him that was designed to help others with HIV/AIDS. Ryan White was a courageous young boy who contracted AIDS through a blood transfusion needed because he had hemophilia. His mother Jeanne stood up and spoke out with him, and for him, when he was bullied and discriminated against simply trying to go to school and live a normal life. Those were the days when most of the people who got HIV/AIDS still died quickly. There was an irrational fear that AIDS could be transmitted simply by being in the same room with or touching someone who had it. We have thankfully come a long way from those days.
However, according to an AIDS fact sheet published by The AIDS Institute 24 years after the Ryan White program first passed the Congress, there are still 1.1 million people in the United States living with HIV/AIDS. The HIV virus is still a public health concern and the number of people infected in many parts of the nation is still of epidemic proportions. With new antiretroviral drugs and the Ryan White Program that Congress has continued to fund, people with HIV/AIDS can often live long and healthy lives. But to do so they must get the healthcare they need and access to programs that will keep them healthy. Approximately 554,000 people living with HIV/AIDS get some service, including their drugs, funded through the $2.3 billion federal Ryan White program. Twenty-four years after first advocating for the Ryan White Act, Jeanne White-Ginder once again traveled to Washington, D.C., to participate in a press conference sponsored by The AIDS Institute a national nonprofit that promotes action for social change through public policy, advocacy, research and education in the areas of HIV and hepatitis. She was joined at the press conference by Michael Ruppal, who is executive director, and Carl Schmid, who is deputy executive director, of The AIDS Institute.
After kicking off her day at the National Press Club, White-Ginder proceeded to Capitol Hill to visit with congressional leaders to thank them for their bipartisan support of the program and remind them of the continued importance of adequately funding it. Jeanne White-Ginder is still fighting the good fight to ensure that her son’s death will continue to have meaning to those suffering with HIV/AIDS. Ryan must be looking down at his mom from his place in heaven and admiring her perseverance to keep fighting.
Today the debate over continued funding for the Ryan White Act is changing. We now have the knowledge on how to limit new infections, including the importance of getting and keeping people with HIV on AIDS drugs. While stigma still exists, particularly in the South, more people have been educated and understand the disease. We also now have the Affordable Care Act (ACA), which is helping people gain coverage to healthcare. This is all good news, because when we combine the coverage and the services of Ryan White Program with the ACA, we can truly increase the number of people with HIV on AIDS drugs. Right now only a third of them access these lifesaving drugs.
If we as a nation are going to end AIDS, we must also deal with the reality that last year the Supreme Court struck down the part of the ACA that mandated states to expand their Medicaid programs which would have helped to cover HIV/AIDS patients’ costs. According to a recent article in Health Affairs, 52 percent of the uninsured people living with HIV/AIDS who would be eligible for Medicaid live in those states that have refused to expand their programs. Even in those states with expanded Medicaid programs, or for those persons who are insured through the ACA, many plans still don’t offer all the comprehensive essential support services, such as case management, transportation, and nutritional services that are needed to ensure retention in medical care and adherence to drug treatment. The facts are that only 37 percent of people living with HIV in the U.S. are retained in HIV care; only 33 percent have been prescribed antiretroviral treatment; and only 25 percent are virally suppressed. Persons of minority races and ethnicities and the poor are disproportionately affected.
As we continue the fight to eliminate HIV/AIDS around the world, we must never forget all those who are currently living with the disease and make sure that we do all we can to help them live long and productive lives. In the United States, that means continued funding of the Ryan White Act.
Deputy Executive Director
The AIDS Institute