Dec 24, 2015
Why have the people (like me) who suffer from meds-related Lipodystrophy been forgotten? Why has the shift gone to the HIV negative community? Why are we talking Vaccine instead of Cure? Why? Because Doctor's and Big Pharma will end up losing money if a cure comes out or is found. I find this socially repugnant.
Response from Dr. Young
Hello and thanks for posting.
There's a lot in your questions- let me see if I can try to address your concerns. If you were right, I'd agree, this would be a repugnant situation. but I disagree. Respectfully.
First and foremost, doctors and other HIV care providers are not the benefactors of the absence of a HIV cure; indeed, my colleagues are your front line to prevent unwarranted disease, illness and death. Moreover, HIV specialists in the US are the lowest (yes, lowest) paid speciality of all American medicine. Don't throw these professionals under the bus; they are among the most dedicated advocates for the HIV community.
Next, Pharma doesn't block cure research- whether for profit or other motive. Indeed, the lack of a cure isn't because there isn't interest, or because there hasn't been investment. It's simply been a very difficult subject (don't forget that we don't cure depression, diabetes, heart disease, etc, etc, either). There is good news on investments in cure/eradication- including this recent announcement of a $20 million grant to UC San Francisco to work specifically on cure strategies.
As for lipodystrophy, I wouldn't say that patients like you have been forgotten- perhaps less in the news, and yes, the research stream has lessened but certainly very much part of the in-care treatment community. Our friends here at TheBody.com have continued to devote pages to the subject, including last month, this interview with Richard Loftus, MD.
Lastly, perhaps your comment about the shift to the HIV-negative community has to do with the attention about HIV Pre-Exposure Prophylaxis (PrEP)- which is highly effective in helping empower HIV uninfected people from getting infected. But if you sense that there's been less attention to the poz community, I would at least argue that this is not entirely correct. Just look at the UNAIDS recent goals of elimination of epidemic AIDS; our IAPAC joint project with UNAIDS, UN-Habitat and the city of Pairs, called Fast Track Cities Initiative has city governments around the world joining with medical and patient communities to radically and rapidly scale up, indeed double the number of people with access to HIV testing and successful treatment in just 60 months. Recently, the World Health Organization Guideline Group (that I'm a member of) expanded HIV treatment eligibility to all people living with HIV, not just those with CD4 counts below 500. This single policy increases by millions, the number of people who will soon benefit from live saving (and HIV preventing) treatment.
The lack of a HIV cure is regrettable; but HIV treatments today (for most people) are very effective and well tolerated; for most who are starting treatment, can be as simple as one pill per day. Life expectancy in many countries is now essentially normal, and increasing dramatically even in countries in sub-Saharan Africa. In my opinion, HIV care and treatments allow people who test early, receive non-stigmatizing and trained care to live normal, healthy lives. Yet, about 1 in 8 people living with HIV don't know their status, and only a minority of people are actually on suppressive HIV medications. Roughly 4000 people will die today, tomorrow and every day for lack of today's medications (not a future vaccine or cure) until we appreciate this atrocity. It would be socially repugnant, indeed an human rights violation of colossal scale to not focus our immediate attention to making sure that all people living with HIV have immediate access to the knowledge of their status. In our clinics, our national and international associations, we're trying to focus global attention to this. I think the needle is moving, but it will take imagination and courage to believe that unnecessary suffering and death can end.
Thanks for reading. BY
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