Being a black gay man living in an urban environment like Chicago and working in the HIV policy field, I'm surrounded by the realities of the modern HIV and AIDS epidemic and its devastating effects. However, even I sometimes find myself stunned by how close to home this disease can hit. Earlier this year, one of my uncles was diagnosed with and died of complications related to AIDS.
He was gone so soon, before I had a chance to say goodbye. Me receiving the call that he was hospitalized, us discovering his diagnosis, and his passing away all happened within a few weeks. It's hard to believe, given all our medical and scientific advances in the U.S., that people still die of AIDS-related illnesses in this country. However, they do: According to the Centers for Disease Control and Prevention, there were an estimated 12,963 deaths (due to any cause) of people with diagnosed HIV infections classified as AIDS in 2013, and 6,955 deaths were attributed directly to HIV.
My uncle was the embodiment of the "cool uncle"; growing up, I was so in awe of him. To me, he represented the definition of manhood. He was tall, lean, and attractive, which enabled him to have a constant stream of girlfriends. He smoked cigarettes (when that was seen as cool); he spent hours talking to me about his travels throughout the United States -- which to a young boy from a small town of only 8,000 people seemed like another world away.
Even at an early age I was what they call "clockable" -- meaning even growing up people suspected I might be gay (which turned out to be true). But my uncle never treated me differently; he embraced me and loved me for who I was. After I finally came out to my family, every time I saw him he would greet me with a big bear hug and exclaim, "Man, it's so good to see you! I miss you so much." That may sound routine to some, but since I came from an extremely religious family who had always been somewhat lukewarm about my sexuality, this meant the world to me and allowed me to breathe a sigh of relief whenever I ventured home on holidays.
My uncle's death was due in part to the perfect convergence of social and health disparities. He lived in a Southern state that refused to expand Medicaid, despite the federal government picking up nearly 100 percent of the cost for this newly covered group, versus the 50 percent match it contributes for the rest of state Medicaid programs. This is more frustrating when we know the South is the epicenter of the national epidemic -- this region is home to 44 percent of all people living with HIV and AIDS in the U.S. If my uncle had had greater access to reliable health care, his health outcome may have been different. and he may still have been able to greet me comfortingly at family affairs.
The loss of my uncle demonstrates to me that despite all the gains we have made, the struggle to eradicate this disease and achieve health equity in this country is not within our grasp. The Affordable Care Act has helped to improve health care access to millions of Americans, including people living with HIV and AIDS, but yet there are still improvements to be made to the system to ensure that the ACA truly provides affordable care. Using my uncle's death as a proxy for millions of others, I'm turning my pain into action.
I'm leading a fight on behalf of the AIDS Foundation of Chicago and in partnership with the Center for Health Law and Policy Innovation of Harvard Law School to enforce the health care rights promised by the ACA for people living with HIV.
Right now some insurers selling plans on the ACA marketplace are refusing to cover lifesaving medication and requiring high cost-sharing for drugs used to treat HIV. That's very clearly unacceptable, and so we have jointly filed formal administrative complaints with the U.S. Department of Health and Human Services' Office for Civil Rights, which enforces new antidiscrimination regulations in state-run ACA health insurance marketplaces.
In Illinois we filed our complaint against for-profit insurance company Humana. In its individual plans in our state, a person living with HIV and on Triumeq, one of the federally recommended treatments for HIV, would pay more for their medication in three months ($4,574) than a person with diabetes (another chronic illness that can be managed with daily medication) would pay in an entire year for all prescriptions and medical services ($3,970). That accounts for about 12 percent of someone's monthly income in the Chicago area. In addition to Triumeq, Humana places 16 of the 24 most common HIV medications on the highest cost-sharing tier in its insurance plan, which can amount to thousands of dollars a year. That's far more than patients must pay for drugs to treat many other conditions -- and that's just not fair.
Not covering basic lifesaving drugs -- or placing them on a cost scale that makes them unobtainable -- guts the spirit and law of the ACA, and we have the power to stop insurers from dodging their responsibilities and to require them to follow laws that make health care access available to all.
People living with HIV, like all people, are healthier when they get the medical care they need. Not only is this good individual care, it's good community care. Research shows that people living with HIV are nearly 100 percent less likely to spread the virus to their sexual partners if they stick to a treatment regimen. Given that HIV is a communicable disease, it makes sense that we fight like hell to ensure that no artificial barriers exist to stop people from accessing the care they deserve.
I'm committed to fighting this battle as long as it takes to ensure that there are no such barriers betweem people living with HIV and their lifesaving drugs. It's my act of defiance to ensure that no one has to experience the unnecessary death of a loved one like me because of a lack of access to health care in the U.S.
You can read more about our Office for Civil Rights complaint by clicking here.
RAMON GARDENHIRE is the vice president of policy and advocacy at the AIDS Foundation of Chicago.
