We Cannot Afford Another Lost Generation in The Huffington Post
December 27, 2012 - Philadelphia, PA
By Thom Nickles
When AIDS became a full blown pandemic in 1981–82, times were so frightening I sometimes wished that I could fall asleep and then, like Rip Van Winkle, wake up when it was over. Since that could never be, I had to deal with the fact that a mysterious virus was killing gay men, and that my own life was at risk. The fact that there were still more questions than answers regarding the virus meant that gay men had to question every form of intimacy, be it saliva exchange during a simple kiss to the more complicated forms of sexual contact.
My friend, Steve McPartland, was in his mid-twenties and on the verge of what probably would have been a successful ice skating career when he broke his back on the ice. Yet no sooner had he found another career path when he became one of the first men in Philadelphia to contract AIDS. Reality hit home in a big way for me when I saw a picture of Steve in the hospital bed on the front page of the local gay newspaper.
The year was 1983, well before there was a test to detect the virus or even a drug to ward off secondary infections of the immune system. Immediately after Steve’s death, the lists of the sick and deceased quadrupled in the gay and national press. We were now in the grip of a plague, first known as Gay Cancer, then GRID (Gay Related Immune Defiency), and finally AIDS.
Fast forward to 2012, namely to a middle row seat on a U.S. Airways flight from Philadelphia to San Fransciso. I’m thinking of Steve while reviewing a program booklet entitled, “The Evolution of HIV/AIDS Therapies,” a short panel discussion due to take place at the Gordon and Betty Moore Foundation in Palo Alto, California. The seminar will focus on the progress achieved in HIV therapies, as well as the global challenges still to be met. I’m traveling with two representatives of the event’s co-sponsor, Philadelphia’s Chemical Heritage Foundation, an independent nonprofit dedicated to chemistry and to helping science find ways to help meet contemporary social challenges. I don’t know whether my two CHF colleagues on board had friends who died of HIV-AIDS. I should have asked them perhaps, but I did not, my head still too full of the faces of other buddies who died of the disease. I thought that I had processed the deaths of these friends long ago, but here I was at 30,000 feet going through an emotional facial Rolodex of sorts, as if the word “evolution” in the program title had somehow got me thinking about the past. Whatever it was, I knew there would be more memories once I was front and center at the Moore Foundation to hear Gregg H. Alton and Norbert W. Bischofberger, both from Gilead Sciences, and Sir Richard G.A. Feachem and Paul A. Volberding, from the University of California.
At the conference, Volberding jolts the audience with recollections about walking around the hospital in the early days and seeing the first person with Kaposi Sarcoma. “It was literally the start of the epidemic,” he says. “It took a while before we realized it was an infectious disease, but once we did there was terror because we didn’t know how it was transmitted. So there was a sense of personal risk in dealing with the patients.” It was the same everywhere, of course. In Philadelphia, many straight people stopped inviting gay friends to dinner. City dentists began to be wary of their gay patients and imagined weight loss when there was none. “You look awfully thin,” my dentist said to me several times. “Are you sure you are alright?” I felt there was something in his eyes that wanted me to say, “No,” so that then he could tell me to find another dentist.
“People went blind,” Volberding continued, “and were unable to care for themselves, while caught in the middle was the social issue and the fact that they were gay and families would often descend on the deathbed and try to take over the care from the lover.” How many times did I hear of families preventing the partners of dying sons from visiting them in the hospital? The stories were endless, of men who had spent years together suddenly told that their relationships didn’t matter. Steve died before the discovery of AZT in 1987, even if AZT was no panacea but a drug with a host of unwanted toxic side effects. “AZT was a troubled introduction,” Volberding adds, “it had to be given 4 hours around the clock.” He tells the assembly about a San Francisco community health seminar he attended at the time, and how the room erupted in beeps when 4, 8 and 12 o’clock rolled around because people had to take the drug in four hour intervals. “There were some benefits to AZT, but not many,” he adds.
1996 saw the first large trials of triple therapy, namely Protease inhibitors being combined with various side drugs, that turned the disease around. These were the infamous cocktail drugs, sometimes amounting to 30 pills a day. While AZT killed the virus quickly, it caused the viral strains it didn’t kill to multiply fast, thereby giving them immunity, a former City of Philadelphia pharmacist, Brian Mark Levister says. The cocktails went after these strains and made sure they did not multiply, increasing a patient’s chances of getting down to a viral load of zero, or the eradication of killer strains.
For many, like Steve and novelist Paul Monette (whom I once interviewed by phone as he lay dying of AIDS in his home in Los Angeles screaming through the receiver about the heartlessness of then President Ronald Reagan and the pharmaceutical industry in working to find a cure), this development came too late. But thanks largely to ACT UP, which helped force the pharmaceutical world out of its apathetic slumber, Steve and Monette would be shocked, were they able to come back to life today, on hearing Volberding say how manageable the disease has become: “With my patients now who are motivated and take the drug, it is as easy to treat as hypertension.”
Volberding’s hypertension equation is further enhanced by the development of the FDA approved drug, Stribild, a once-a-day tablet containing two previously approved drugs and marketed as the popular combo pill, Truvada. Stribild’s side effects can include nausea, diarrhea and decreased bone marrow diversity, but it is still a long way away from the toxicity of AZT or the fate of first AIDS patients who could only be treated for infectious diseases, like Kaposi Sarcoma, a skin disease that eventually infects the organs.
Does managed care mean that the pandemic is over? According to the panel, while the global infection rate has dropped some 50 percent since 2001, 1.7 million people died of HIV infection last year and 2.5 million people are currently infected. And because people are living longer, this means that there are still more infections than people being put on treatment. The number of people with HIV is still increasing, although thanks to the creation of the Global Fund to Fight AIDS, an organization founded by Sir Richard G.A. Feachem, nearly 50 billion has been spent on development systems for health and HIV/AIDS.
On the return flight to Philadelphia, my thoughts drifted to the AIDS = hypertension equation and the possibility that the search for a cure would dry up now that the disease can be managed. Then I remembered something Bob Rybicki, Vice President of Programs and Services at the San Francisco AIDS Foundation, told me: “If money is taken away from prevention services and adherence to patient treatment plans, then the epidemic will start to flare up again.”
But we cannot afford another lost generation of Steve McPartland’s and Paul Monette’s.
Link to The Huffington Post.