If my doctor had told me I’d live to see the 30th anniversary of AIDS, when I was diagnosed 15 years ago, I wouldn’t have believed him. At that time, doctor’s waiting rooms were filled with people on the brink of death. All I could think about was how long it would be until I joined them.
When death sideswipes you and takes out the person next to you instead you’re left with a sense of survivor’s guilt. For years I wondered why I got to survive when others did not. Partly, it was luck. It was also because I was diagnosed when certain medicines were available. I had a job and health insurance so I could afford care. And I was diagnosed early, before I was too weak to recover.
Up to the mid ‘90s, it was understandable that survival was a dicey proposition for people living with HIV; scientists were struggling to get the upper hand on the virus. But a decade and a half later, we have more than 26 antiretroviral drugs (ARVs) capable of stopping HIV progression—drugs that also lower viral load so that the risk of transmission is reduced by 96 percent (if treatment is effective).
And yet, of the 1.2 million Americans estimated to be living with HIV/AIDS, only 262,000, or 22 percent, are on ARVs. Some people aren’t on treatment because they may not yet need it or because they don’t know their HIV status (one in five Americans living with HIV are unaware they are positive), but many who want and need ARVs can’t get the drugs because they can’t afford health care.
But because HIV/AIDS remains something many would rather not think or talk about, because people erroneously believe it is under control, and because there is still too much stigma and silence around HIV—the mainstream media barely register the fact so many people with HIV can’t access treatment. The world needs to be reminded that people are still dying of AIDS in America.
Which is why we decided to feature the incredible work of Joseph’s House, an AIDS hospice in Washington, DC. A reflection of the disproportionately high HIV rates in the District of Columbia, Joseph’s House punctuates the fact that we still have a big problem. Having effective medications is of no consequence if we can’t ensure they reach those in need.
This month’s issue also examines the outdated law that bans HIV-positive people from donating their organs to other HIV-positive people. In “The Right to Give Life,” we show how removing the ban offers the double benefit of saving lives of people with HIV in need of organs while freeing up more room on the organ waiting list.
It’s time that HIV-related laws and health care policies got in sync with the reality of the AIDS epidemic in America. Even though we live in economically strained times, we must ensure people don’t die when we have the means to save them.
For me, survival guilt is worse when you know you could do something and do not. Early AIDS activists fought to develop the drugs that have saved our lives. It’s now our job to fight to get those drugs (and organs) to all in need.
I invite you to join me in this fight. Check out our new initiative at poz.com/roadtowashington to learn how we can end AIDS together.
Editor in Chief