I come before you once again to tell you that the state of research for some kind of cure for AIDS at the National Institutes of Health is in the toilet.
As reported in Poz, a statistical model has predicted that over the coming years, if present trends continue, by 2035 there will be 1.39 million cases of AIDS in America alone, and some 435,000 deaths, costing the health care system some $256 billion.
Last year, an estimated two million people were newly infected with the virus worldwide, according to data from UNAIDS. In America, one in eight people infected with HIV do not even know they are infected. One in four new HIV infections occur among youth and young adults ages 13 to 24. Moreover, there was a 22 percent increase in new HIV infections among gay and bisexual men in this age group between 2008 and 2010. “In 1995, a record 50,877 Americans with AIDS died — a one-year count rivaling the 58,000 Americans lost in the entire Vietnam War.” (Frank Rich, New York)
I have dutifully taken my AIDS meds since they became available. I still have respectable T cells and undetectable HIV. I have, however, almost died twice. I spent most of last year in hospitals. Hospital care in this city — New York — is awful and depressing, especially when they can’t find out what’s wrong with you, which was the case for me.
All of this has been very expensive. Even with all my insurances, the resources my husband and I now have to get us through our declining years are becoming diminished. For the first time I am frightened, particularly for David, who is younger and who has had to sacrifice much of his own career as a successful architect and designer to get me through all this.
It was he who saved my life, more than any doctor. I fear for anyone sick with AIDS who does not have such a care partner.
Situations like ours will be increasingly widespread as the population of aging AIDS survivors progressively grows.
I spent last Friday with the staff and volunteers of GMHC. Under the dynamic leadership of Kelsey Louie and Roberta Kaplan, this organization that was started in my living room in 1982 when there only a few hundred cases of something now serves over 9,000 clients and feeds several hundred of them every day. (The food is great.) Many of the volunteers and staff of 90 are working there in memory of loved ones they’ve lost. It was an exceptionally moving experience for me to be among them. They have seen first hand and on a daily basis the effects of all that I am talking about.
Modest but significant bone density loss is now being seen in those taking Truvada (the only drug approved for PrEP) and more so in those taking a higher dose of Viread. Peak bone mass is an important predictor of fracture risk later in life. My gay podiatrist told me that the city’s department of health has been announcing an increasing number of deaths from drug-resistant gonorrhea, which is not protected by PrEP. This very same department of health has seen fit to close down the public health clinic in Chelsea, the neighborhood that is home to the highest number of cases of sexually transmitted diseases in the city. Gonorrhea numbers are out of sight.
The appointment of a new head of the Office of AIDS Research at the National Institutes of Health has been delayed again.
This is when my fear turns into anger akin to rage. What is going on here? Or rather, what is not going on here? Or rather, what is still not going on here? This plague is 35 years old.
OAR is where the research money is. Its director is the person who determines where it should go to do what and by whom. Its last director, Dr. Jack Whitescarver, a gay man whose reign brought very mixed reviews, retired on June 30. His departure must have been known for many months prior to June. One would think in a decent, well-managed, sensible, practical, and humane institution, his replacement would have been ready to seamlessly take over control on July 1.
But the NIH is none of these things. One is struck over and over how casually they waste time, and have done so for these 35 years (and counting) of this plague.
Several months ago, a small group of us (representing amFAR, GMHC, ACT UP, and Treatment Action Group) confronted NIH director Dr. Francis Colllins, demanding to know what was happening, not only with a new OAR director, but also with the sorry state of their research. It is no secret now that there’s no cure in sight and that Whitescarver and Dr. Anthony Fauci have been less than forthcoming about their failure to come up with very much. Dr. Fauci is the Director of NIAID, the National Institute of Allergy and Infectious Diseases, which should be in charge of AIDS, but he is a director who is not allowed to touch the money, which must come via OAR via Dr. Collins. Talk about a bureaucratic nightmare! And all these years, Dr. Fauci has led us to believe that he’s in charge. He’s said many times that he doesn’t want to retire until he finds a cure for AIDS. I once believed him. I once believed there was a cure for AIDS. Dr. Fauci, Dr. Collins, the NIH have done their best to refute this notion and tarnish my hope.
“It’s clear that you have a limited time of effectiveness in Washington if you really are doing anything. If you’re not doing anything, you can stay there indefinitely,” said Dr. George Mueller, whose tough-minded management dauntlessly and successfully supervised getting a man on the moon and then immediately leaving NASA and Washington to return to the private sector. Dr. Fauci has been in Washington for some 40 years.
One in eight Americans infected with HIV still don’t know they have it.
According to Dr. Collins, a final candidate for the OAR director is expected in December or January at the latest. A search committee (which fortunately includes our Peter Staley) is currently reviewing the full packet of applications, and will be interviewing candidates on November 10. They’ll send their “short list” of three or four recommended candidates to Collins about a week later. At that point, their job is done, and Collins picks from this list. God only knows how long he’ll take, and God only knows how long the new head of OAR will take to figure things out, to settle in, to fund new research. A former head of OAR called a moratorium for an entire year while he tried to learn everything he was meant to know. We do know Collins is more interested in Alzheimer’s than AIDS and Congress is not interested in AIDS at all.
Any sense of urgency at the National Institutes of Health, which by charter is meant to look after the health of all the American people, is invisible and relatively non-existent. Time is being wasted on a never-ending daily basis. That it will take this long to fill a vacated position for a new OAR chief is a perfect example of how this place wastes time. By Dr. Mueller’s definition they’re not doing anything. They’ve all been in Washington too long.
LARRY KRAMER is a founder of both GMHC and ACT UP. Volume One of his history of this plague, The American People, has just been published. Last year Yale University awarded him a Doctor of Humane Letters.