Jeff Taylor, incoming Co-chair of the Community Advisory Board of the amfAR Institute for HIV Cure Research, has been living with HIV for 35 years. A longtime HIV research advocate and cancer survivor, he has served on many community advisory boards, including currently the National Cancer Institute's AIDS Malignancy Consortium and the Collaboratory of AIDS Researchers for Eradication (CARE). He produces a monthly education series on HIV treatment issues for HIV patients and providers, serves on the regional Ryan White Planning Council, and is director of the HIV+Aging Research Project-Palm Springs to study aging in HIV.
In observance of National HIV/AIDS and Aging Awareness Day on September 18, amfAR spoke with Mr. Taylor about the constellation of issues that affect older Americans living with HIV.
amfAR: How did you become involved in community advocacy?
Jeff Taylor: I did it out of self interest. When I was infected in 1982 there was no reliable test and the diagnosis was considered a death sentence. So in 1988, when there was talk of AZT being a treatment, I got tested and was told I had two years to live and to start making arrangements. By that time my T-cell count was below 200.
The first thing I did was to buy a lifetime membership to a gym because I had watched people waste away as they died, looking like concentration camp victims. So I thought, "Whatever I can do to keep that from happening, I will."
And the second thing I did was sign up for a clinical trial at the AIDS Clinical Trials Group (ACTG) at Northwestern University in Chicago. I got into one of the first AZT trials for people without a formal AIDS diagnosis, which at that time required symptoms of either Kaposi sarcoma or pneumocystis pneumonia. After that I continued enrolling in clinical trials to get access to drugs to stay alive. Until the effective drug "cocktails" were approved in 1996, I got nearly all my drugs through clinical trials.
I also started going to informal community meetings of HIV advocates to share what little information there was. That group later developed into the Test Positive Aware Network (which publishes Positively Aware magazine), and has been a force in the field ever since.
In 1989 I decided I couldn't survive another Chicago winter and I moved to San Diego because they had one of the best ACTG sites in the country, headed by Doug Richman, still a leading virologist in the field. I began participating in their studies and was asked to start the group's Community Constituency Group, now called the Community Scientific Liaison Subcommittee.
amfAR: More than half of people living with HIV in the United States are age 50 and older, and is projected to be more than 70% by 2020. What would you say are the biggest challenges facing people living with HIV as they get older?
Taylor: Many long-term survivors who tested one drug after another developed resistance and are on what we call "kitchen sink" salvage regimens, where they kind of throw everything at the virus. These people are taking a lot of pills, some very toxic.
For a smaller subset, even that's not working and they are struggling to put together an effective regimen. There's also a subset whose CD4 counts have not rebounded, even though their viral load is suppressed. So they're still in that under-200 danger zone and fighting to stay healthy.
People are still dealing with the toxicity of the drugs over the years. For example, a lot of people who were on tenofovir have kidney damage and bone mineral loss with resulting fractures that restrict their mobility. So they are often physically 10-15 years older than their HIV-negative counterparts and are having to struggle with their health all the time like they did before the cocktails came out. They're also dealing with the effects of polypharmacy, from having to take other drugs to manage aging-related comorbidities like diabetes, high blood pressure, and cardiovascular disease.
Aside from the medical issues, many people experience what has been dubbed the "AIDS Survivor Syndrome" -- the psychological effects of having been fighting an epidemic for the last 35, almost 40 years now. When people who were able to cope for a long time start to watch their friends die again, or to get heart attacks and cancer at higher rates than others their age, they begin having the same grief reaction they had earlier in the epidemic. Many get depressed, some commit suicide, stop taking their drugs, or just completely isolate and have a horrible quality of life.
Back when there was no hope and no cure there were a lot of support programs, and monies were dedicated to them. When the new drug "cocktail" came out in '96 the whole thrust -- as it should have been -- was to get people on the drugs, but we've lost sight of people's psychosocial needs.
amfAR: Are there ways that research programs could better serve older Americans living with HIV?
Taylor: Absolutely. The Multicenter AIDS Cohort Study (MACS), now partnered with the Women's Interagency Health Study, has been an invaluable resource since the beginning of the epidemic. MACS initially enrolled both HIV-positive men and other gay men of the same age to see what was causing people to seroconvert. These people are now in their 50s and 60s, and we know there has been accelerated or accentuated aging. But we don't know what happens when they get even older.
We need novel ways to get people out of their isolation and depression. As importantly, we need to find ways to provide culturally competent care.
Palm Springs, where I now live, is unique in that we have a very high proportion of older people with HIV. I've been working on forming a community-based research collaboration with local providers called the HIV and Aging Research Project, Palm Springs, to look at people longitudinally over time. We have a cohort of people that's missing elsewhere -- people in their 70s, 80s and 90s -- and we hope this group can fill the data gaps.
We need to get a handle on inflammation. Aging is a disease of inflammation; and HIV disease, even if it's fully controlled, causes chronic low-level inflammation. I think that's what's driving a lot of the age-related comorbidities like increased cancer rates, increased rates of cardiovascular disease, bone mineral loss, kidney disease, and diabetes that we're seeing exacerbated in the HIV population.
We need novel ways to get people out of their isolation and depression. As importantly, we need to find ways to provide culturally competent care. Staff in AIDS service organizations are very well-meaning, but often weren't even alive when the epidemic was raging. They're taught, "control their HIV, get CD4 back up and they should be fine," but they may have no idea what their older patients have lived through, so they're unaware of the psychosocial factors that are causing most of their problems.
amfAR: About one in six new HIV diagnoses in the US are among people aged 50 or older, and older Americans are more likely to receive the diagnosis later in the course of their infection. What could be done to improve HIV prevention and testing rates in this population?
Taylor: First and foremost, we need to recognize that older people have sex. There seems to be a real taboo in our society about talking about this. There have been a lot of campaigns for opt-out testing but it's not mandated. Providers need to have frank conversations with their patients about whether and how they are having sex, and if they are using condoms. Many people who were long married and are suddenly finding themselves single think, I don't have to worry about getting pregnant so there's nothing to worry about; and that couldn't be further from the truth.
Even in the gay community where people have been getting the safe-sex message for years, there is a lot of complacency now that we have effective treatment. There is much more unprotected sex happening due to the successes of treatment as prevention with the U=U [undetectable = untransmittable] campaign, as well as pre-exposure prophylaxis [PrEP]. But not everybody is on those therapies and so people are definitely at risk.
Also, the only approved PrEP regimen right now, Truvada, contains the old HIV drugs that cause kidney damage and bone mineral loss. So if you have any of those issues you shouldn't be on Truvada. There is currently some research being done on less toxic PrEP regimens, but I think we're still a few years away from any getting FDA approval.
Many people radically changed their sexual practices out of fear in the '80s and '90s, but some, once they get older, decide to cut loose and have unsafe sex. There are also a disturbing number of people in their 60s and 70s turning to methamphetamine use. HIV clinicians have told us that their number one complaint is that they have patients who are out partying. They tell them the risks, but their attitude is, "I missed out on this. I'm not happy the way I am. I want to go out with a bang and have some fun, consequences be damned." So once again, we can't ignore the psychosocial aspects of what the epidemic has meant for the entire community, not just those who are HIV positive.
amfAR: What issues do you address in your monthly education series for HIV patients and providers?
Providers need to have frank conversations with their patients about whether and how they are having sex, and if they are using condoms.
Taylor: I first surveyed our population to find out their needs and then started bringing world-class researchers and providers from UCSC and UCLA to speak. We discuss the newest drugs and if they will work for older treatment-experienced people, and we provide practical information on healthier living. People are also anxious to hear the latest about a cure.
And then we talk about how to live a good life with HIV. We formed a Palm Springs chapter of Let's Kick Ass, a social group started in San Francisco by Matt Sharp and Tez Anderson. People get together for coffee, pot lucks, pool parties, movie outings, and other activities. We also do a series called the Reunion Project, begun by Test Positive Aware Networks in Chicago. We've extended these seminars around the country, both to provide information and to reunite long-term survivors who feel isolated and marginalized in their own communities.
amfAR: Have you seen attitudes towards HIV and people living with HIV evolve over the years?
Taylor: It's just night and day. Back in the '80s it was an ugly, ugly time. We had a hostile presidential administration, and Congress was not very supportive either. President Reagan didn't say the word AIDS until 1987. And of course, we all remember people like Pat Robertson and William F. Buckley Jr. saying things like that gay men with HIV should be tattooed on the buttocks and put in concentration camps. There was a lot of fear, hysteria, and discrimination.
So of course that's changed thanks in no small part to the work of activists, including groups like ACT-UP, who channeled and retooled the gay liberation political activities of the '70s. And they were helped by many in the lesbian community who fought alongside the gay men to force these changes. Then when the AIDS cocktail became available in '96 that was a complete game changer. People stopped dying, and that tremendously reduced the hysteria.
But even today in places like the U.S. rural South and Washington DC, we have new infection rates that are worse than those in South Africa. So HIV has become like so many things in this country, a disease of the poor and disenfranchised, and racial minorities are being disproportionately affected.
The successes of treatment as prevention and PrEP have also reduced stigma. It used to be really hard for HIV-positive men to date; they were considered sexual pariahs. But PrEP's benefits have only been seen in communities with access, which tends to be gay white men in most parts of the country. Access to PrEP in the South remains limited, especially among younger black MSM, who have a one in two chance of becoming infected with HIV over the course of their lifetime.
The downside is that a lot of people think AIDS is solved since we've got effective medication. So they don't see any urgency, or a need to devote time and resources to finding a cure. Many don't realize that there are 40 million people living with HIV worldwide -- many of whom don't currently have access to these lifesaving medications, which furthers the epidemic's spread
And the irony is that we could stop the AIDS epidemic right now if we tested everybody, put them on treatment if they're HIV positive, and put everybody at risk on PrEP. There would then be no new infections. But we can't manage that in this country because we don't have the political will or a functional healthcare system. And the problems are worse elsewhere, so that's not going to happen. We can't treat our way out of this disease. We have to find a cure, otherwise HIV/AIDS will always be with us.
amfAR: What do cure studies such as those being conducted at the amfAR Institute mean to you personally? How would the lives of people who have been living with HIV for many years be changed if there was a cure?
It's a testament to the incredible altruism of so many in the HIV community that they are willing to keep putting themselves on the line for cure trials that have no direct benefit to themselves.
Taylor: I think everyone, positive or negative, who has lived through the epidemic desperately wants to see a cure in their lifetime. I've been struck by the comments of people in focus groups, especially those from marginalized populations, who said that the only thing that would cure the stigma that remains a barrier to almost every aspect of their lives is a cure. It's a testament to the incredible altruism of so many in the HIV community that they are willing to keep putting themselves on the line for cure trials that have no direct benefit to themselves. That's what's making this whole research enterprise possible.
But we should recognize that a cure may not dramatically change the lives of long-term survivors who have suffered the most. It's not going to reverse all the damage they've experienced from both the virus and the toxicity of the treatments over the years. So even if a cure were found tomorrow we're going to have a population of well over half a million older people in this country who are going to have lifelong medical and psychosocial challenges. We'll celebrate a cure but we have to remember that it's going to leave some people behind, and we can't forget them.