We Are Not OK -- Until the Cure
By Jeannie Wraight
July 5, 2011
The epidemic has changed so much since I've been involved in the AIDS crisis. When I was first diagnosed, HIV really was a death sentence. I remember my first doctor telling me that I could live as long as 10 years. I smiled and walked out of her office happy. I made it to my car before I realized that she had just told me I'd be dead before I was 38 -- if I was lucky!
The waiting room of my first clinic was like a party every 3 months. We all came on the same day and many of us already knew each other from school or the street or drug programs or elsewhere. We'd go from one person to the next, one group of familiar faces to the next, until our names were called and then we would do our triage and blood draws and wait in the back to see our doctors together. After about a year I noticed the crowd getting smaller and smaller each time. Each visit became less and less of a party atmosphere and more of a telling session of who didn't survive the last 3 months.
The phone rang immediately following approval of the first protease inhibitor with my then boyfriend's doctor telling him to go to the pharmacy. There was a new drug approved and there was a prescription waiting. It seemed like only days, though it had to be longer, as I watched him go from laying in bed all day to being up and feeling great. It was a miracle.
It was a miracle that had its drawbacks. Whereas HAART saved and saves so many lives and revolutionized HIV treatment and care, it also hindered it. We had been dying and fighting for our lives. There was an urgency that propelled action in the AIDS crisis forward. HAART saved lives but slowed that action to a crawl. Drug companies made 'me-too' drugs (drugs similar to the ones we already had) and searched for ARTs with better and better resistance profiles and easier dosing, abandoning the search for a 'cure' which quickly became a dirty word. They focused on making HIV a continually profitable 'chronic manageable disease' through HAART, even though our bodies and bank accounts quickly told us years and years on HAART was not manageable.
Idiotic news outlets declared AIDS was over and Magic Johnson was cured and so many people bought the party line. The attention HIV garnered, as well as the funding, continued and continues to decrease year after year.
Activism all but died out. The Monday night ACT UP NY meetings at the Gay and Lesbian Center, as well as the demonstrations, became smaller and smaller until only a few die-hards remained; and then even most of us gave up as the tiny meetings became less and less focused on the issues that had once ignited heated discussions, passionate pleas, tears and angry voices.
In living we learned how to live with HIV and AIDS, how to accept what really is not acceptable. If HAART saved us all, then it would be acceptable. IT DOES NOT. Twenty to 40 percent of people who need HAART have no access to treatment. And among those of us who do, we are living with and dying from complications like cardiovascular disease, liver disease, diabetes, kidney disease, etc. How many more experts need to say that we will never be able to make enough HIV antivirals for everyone who needs them before we start to listen?!
Recent data that showed a 96 percent decrease in HIV transmission for people on HAART who initiated therapy at over 350 CD4 cells is extremely encouraging news and should be considered as a means of prevention as well as treatment. It is another tool in preventing infections but not, as some groups have contended, the answer to ending the AIDS pandemic.
Efforts to reduce transmission, as well as research for an effective preventative vaccine, are highly essential and must be explored, supported and utilized to contribute to ending the AIDS crisis. But prevention techniques, no matter how effective, will never be utilized by everyone. Just look at the condom. We know condoms prevent infection but a large percentage of people, positive and negative, simply do not use them for one reason or another.
A vaccine is a long ways away. Although it should in no way affect the research and development of a vaccine or the desire for one to be developed, it is important to point out that if a preventive vaccine is found while there is no cure for HIV, it will essentially equate to a death warrant for those of us already infected. If and when a preventive vaccine is discovered, the 34 million+ of us already infected will no longer be a viable, growing market for pharmaceutical companies, and thus there will not be anymore money spent on researching and developing new drugs for us. What we have at that time will be the only therapeutic options we will ever have. The only true way to end the AIDS crisis is either a functional cure or to eradicate HIV.
We are at a crossroads in the AIDS pandemic. The search for a cure, both focused on eradication and a functional cure, has gained much momentum led by the scientific community and a small number of activists and advocates. Every day we learn more and more about how HIV works and how we can stop it. And we are getting closer. One person has already been cured and although it is not plausible to follow the treatment course that cured him, we have learned much from it. Sounds great? Well here's the problem, or shall I say the biggest problem. There's no money for the research needed to get us there, there being a cure.
Hints and Allegations
Jeannie Wraight (known as Jeannie Gibbs before her marriage in April 2011!) has been an AIDS treatment activist for over 14 years. She was a longtime member of ACT UP New York and has participated in countless demonstrations and actions. She has attended over 75 HIV conferences around the world and writes for several HIV publications. Ms. Wraight has sat on many advisory boards as well as the Board of Directors of Health People, an AIDS service organization in the South Bronx, New York. She lives with her partner in the Bronx, where she works on her Web site HIVhaven.com and advocates for novel HIV therapies and nutritional supplements for people with HIV/AIDS. She is also an animal rescuer.
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December 29, 2015 - Moving On: A Blog Entry by Jeannie Wraight
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