January 19, 2011
I was infected with HIV in 1981, the year the disease was discovered. Back then, most people died in six to 12 months from horrible diseases like Kaposi's sarcoma, a skin cancer normally found in older men of Semitic descent; pneunocystis carinii pneumonia, a fungal infection in the lungs; cryptococcal meningitis, which causes the lining of your brain to swell; or toxoplasmosis: You got that from cat feces, and it turned your brain to Swiss cheese.
There were no treatments, really. A "long-time survivor" was someone who lived 18 months.
I was 24 then. In April, I will celebrate my 54th birthday.
I almost didn't make it. In 1996, my doctor at Kaiser Permanente in Los Angeles called my mother in Chicago to tell her that if she wanted to see me alive again, she should fly to Los Angeles immediately. They had given me less than 24 hours to live. I was in a coma in the ICU.
I eventually came out of that crisis, and my doctor prescribed something brand new: a three-drug regimen, commonly referred to as "the cocktail." I recovered from that crisis and went on to found the Black AIDS Institute, an organization I still lead.
What a difference three decades can make. We have gone from no drugs to a few very toxic drugs that didn't really work to more than 25 antiretroviral drugs used to treat HIV. The new drugs are highly effective, and the side effects are much reduced.
And the breakthroughs continue. Last year, scientists identified three new HIV antibodies that might contribute to the development of a vaccine. A gel that women can apply before sex, known as a vaginal microbicide, demonstrated efficacy in a clinical trial in South Africa, and research released last month indicates that some antiretrovirals, when taken as prophylactics, can prevent HIV infection.
Also last year, Congress passed and President Obama signed health care reform legislation that protects people with HIV from being discriminated against in getting health insurance, eliminates lifetime caps on health insurance coverage and expands access to prescription drugs.
And finally, we have a national AIDS strategy that if properly implemented could dramatically reduce new infections, increase the number of people who know their HIV status and increase the number of people in appropriate care and treatment.
The AIDS battle appears to be one we could win.
But we are not winning it yet. Since the advent of the cocktail that saved my life, AIDS deaths in America have dropped from about 50,000 a year to 18,000 a year. That's a huge advance, but 18,000 deaths a year is six times the number of people we lost on September 11. Our AIDS toll is still horrific and unacceptable. I'm alive today for two reasons: I have access to appropriate care and treatment, and I have the love and support of family and friends. Unfortunately, too many people living with HIV/AIDS have neither.
Stigma threatens to derail our efforts to win the battle against HIV. It contributes to misconceptions and fuels irrational fears that keep people infected with HIV from taking action that could save their own lives and the lives of others.
Focus groups conducted by the Kaiser Family Foundation last year with black Americans across the nation revealed a strong perception that life for those living with HIV/AIDS is a shameful and lonely existence. When faced with discrimination, alienation and marginalization, people will not disclose their risk factors, use condoms, get tested for HIV, seek treatment or talk openly about HIV/AIDS.
The therapies, while effective, are very expensive (approximately $12,000 to $14,000 per year, not including the other costs of care). Without health insurance, many people living with HIV/AIDS cannot afford them. Many state-run, publicly funded AIDS drug assistance programs have waiting lists and are not able to accommodate everyone who needs these life-saving drugs.
The new Congress is threatening to repeal health care reform, which would leave many people with AIDS and other diseases at the mercy of insurance companies who could go back to their old ways of denying coverage to people with "pre-existing conditions." And without funding, the new national HIV/AIDS strategy is just a bunch of good intentions and pretty words.
Every day I live to be Greater Than this disease. That's why I founded Greater Than AIDS with the Kaiser Family Foundation. As we commemorate the 30th anniversary of the first AIDS cases identified in the United States, we have the tools to end this epidemic.
The question is: Do we have the moral and political will to use those tools compassionately and expeditiously?
Yours in the struggle,