October 20, 2010
When Oprah used Magic Johnson as an example of how one can successfully live with HIV and implied that maybe having HIV is no longer a "big deal". Ms. Gordon was not having any of it. "Most of us don't live like Magic Johnson," she said. Most of us do not have the resources to employ a personal chef or trainer; hire someone to clean our house, do our laundry or take care of our children; or enough celebrity or staff to protect us from the stigma that accompanies living with HIV. Most of us are not Magic.
Oprah was very gracious and accepted Ms. Gordon's pushback. But her initial belief reflects the way many, if not most, HIV-negative Black Americans view living with HIV. Many Black folks, particularly young people who see Magic -- or me, for that matter -- mistakenly think that living with HIV is no big deal. They view it as yet another manageable chronic disease. As someone who lives with the disease every single day, I can tell you they are incredibly wrong!
There is no doubt that the treatments for HIV are better than they were 15 years ago: The regimens are easier, the drugs are less toxic and there are fewer adverse effects. Yet those of us who take these medicines can definitely experience major problems. For starters, having to take any medication every day for the rest of your life is emotionally, physically and logistically challenging. HIV regimens are particularly unforgiving -- they require greater than 90 percent compliance or you risk becoming resistant to their therapeutic effects and possibly developing drug-resistant or untreatable strains of the virus.
The drugs affect each person differently. Some experience chronic fatigue; others diarrhea; still others lipodystrophy, a redistribution of body fat. Some experience liver and or kidney damage, diabetes and or heart disease. And because the treatments are relatively new, no one yet understands the long-term effects of being on these drugs over the course of a lifetime. Moreover, for people uncomfortable with disclosing their HIV status, the process of hiding their medications from family, friends, co-workers or employers can be very difficult.
Even with these challenges, I can tell you from experience, receiving treatment is better than not receiving treatment. I am alive today, as are many of my friends, because of it. America's HIV-related death disparities are inextricably connected to the treatment divide between Black people and other racial ethnic groups. But receiving treatment remains challenging, particularly for those without insurance. The therapies are expensive, even cost prohibitive, and in the current economic environment, AIDS Drug Assistance Programs (ADAP) designed to help poor people gain access to HIV/AIDS drugs now have waiting lists or restrictions on how many medicines a person can take.
The shame and humiliation that accompany HIV infection contribute to another major difficulty. While stigma has clearly declined, it continues to be a factor. People with HIV risk rejection in relationships and in employment. Sometimes even privilege cannot protect them, as Magic's unsuccessful attempt to resume playing in the NBA after his diagnosis demonstrated. Personal profiles on Internet dating sites often read, "HIV negative, you be too," or "clean, looking for same." What's more, many people believe that if you have HIV, you did something to deserve it. And while in some circles we have moved from "AIDS is God's punishment," that or similar sentiments often lurk just below the surface.
No matter how you slice it, living with HIV is a big deal. It is not something that should be treated cavalierly. Even Magic could not be protected from the reality that HIV infection lasts for a lifetime. Neither he, nor I, nor you -- should you get infected -- can give the virus back. HIV can be treated, but it can't be cured. We must remain ever vigilant to focus on prevention, so those who are not infected don't become infected and people who are infected are diagnosed early and obtain appropriate care and treatment.
I am extremely blessed. I am grateful to have had the same remarkable doctor for over 20 years and a family that loves me unconditionally. Living with AIDS has taught me lessons I might have missed had I not become infected. And while 30 years into it -- like George Bailey -- I wouldn't change it. I wouldn't wish it on anyone else either. Living without HIV/AIDS is a more preferable wonderful life.