The Las Memorias AIDS Wall in Los Angeles memorializes those lost to the disease.
December 1 is World AIDS day, and I am sad. Two men that I loved most in my adult life, next only to my husband and partner of 27+ years, were lost to AIDS. Thinking of them now, 30 years or so after their deaths, it is hard not to weep. I dedicate this post to the memories of these wise, beautiful, loving men.
Of course I am also angry! Michael's and Lyle's deaths may not have been preventable, but they occurred at a time when the President of the United States declined even to utter the word "AIDS," let alone support needed research into prevention and treatment options.
So millions became ill before the first effective medications became available in the mid-1990s. Of these, thankfully, many still live; but they may be in marginal health given the effects of the virus prior to beginning treatment and the side effects of decades of taking anti-retroviral medicines.
The men I've known were and are my age-peers. Their sexual history back in the day is not remarkably different from mine. Grateful for my undeserved good health, I still grieve the loss of those who are gone, and the multiple losses in quality of life experienced by some long-term survivors.
But today I'm also worried. I've been using Grindr to gain an understanding of some of my younger counterparts. Grindr is a 5-year-old mobile online site used especially by younger (20-40 years of age) gay and bi men for social and sexual connections, and I've had some really delightful conversations through the application's chat technology.
This has to be characterized as a highly unscientific and anecdotal bit of research. But I conclude that many Grindr users are thoughtful, youngish men of some substance. To this old man's eyes they are often quite physically attractive, though not always in conventional terms.
Most of those I talked to are students at top universities in the area or college graduates; they have responsible jobs; they are school teachers, architects, physicians, managers of a business, entrepreneurs. They represent virtually every ethnic group, but obviously include only those who can afford smartphones.
Some have friends that they hang out with on a regular basis. Others live more solitary lives. Though interested in significant longer term relationships and making more friends, the preponderance of Grindr users are also looking for "Mr. Right Now," which often means hooking up a within a short time after meeting online.
Grindr has its own line of clothes promoting sexual attractiveness.
Almost universally, they are depending on pre-exposure prophylaxis (PrEP) to protect them from becoming infected by HIV or spreading it. And therein lies my worry.
In 2012 the FDA approved the use of Truvada, produced by Gilead Sciences, Inc. to be taken in daily regimen for the purpose of PrEP. Truvada is a combination of two retroviral drugs that, when present in high levels in the bloodstream, genital tract, and rectum will prevent the human immunodeficiency virus from entering the body and causing infection. Truvada in combination with other drugs is also taken by those already infected to reduce or stop replication of the virus in the body.
The scheme has been subjected to a number of clinical trials, some of which are ongoing, so as to provide evidence concerning its effectiveness and to identify any problematic side effects. The potential side effects include nausea and the risk of reduced liver and kidney function. Medical experts say these side effects can be reversed with proper treatment, but users of the scheme must be monitored by their physicians.
The studies also show that if taken consistently on a daily basis and used in combination with other safe sex practices such as the use of condoms, PrEP can reduce to near zero the frequency of sexual transmission of AIDS in both same-sex and opposite sex couples.
PrEP is aimed at people who are HIV negative, but at very high risk of infection, and for whom other methods of risk reduction have proved ineffective due to improper use - for example using condoms without the correct or sufficient lubrication, causing infected semen to leak into a partner's rectum. Use of PrEP by iteself has been demonstrated to be more effective than the use of condoms as the sole method of risk reduction.
So it's no wonder everybody from the American Medical Association to Grindr is promoting PrEP. And there's no doubt that the proper use of PrEP will reduce the spread of AIDS. Grindr brags that over 25% of users in a 2015 survey said they were on PrEP. So why do I worry about my new Grindr friends and their dependence on PrEP? Chalk it up to human nature and my own experience.
- First of all, is it true that your potential playmate is really using PrEP? We know from previous research that those with HIV infection are reluctant to acknowledge it, for fear of rejection. Why wouldn't this be similar about the failure to use PrEP in a sexualized environment where such use is clearly expected by potential playmates.
- I take about 8 different medications on a daily basis. None of them has any side effects to speak of. But I miss them several times a month - I just forget, sometimes in the morning, sometimes at bedtime. And I'm lazy about refilling my pill box so I sometimes go several days in a row without taking any of them. What if one of those pills was the Truvada? Effectiveness falls off rapidly with lack of consistent use.
- And if I did forget Truvada for a few days over the last couple weeks or a month, how likely is it that I would turn down an attractive guy who wants me to "come on over?" The studies on PrEP use demonstrated that about 50% of clinical trial participants who self-reported consistent use were in fact missing many of their doses.
- Finally there's my disturbing perception that PrEP is considered by many young gay men to be all that is needed to protect themselves and their sex partners from HIV, despite the clarity of information to the contrary, such as that provided by the manufacturer. According to one study of "high risk" men who have sex with men, 81% of those taking PrEP were having receptive anal sex without a condom.
And then there are those optimistic but still pesky statistics. It's clear that when the medication is used at least four days a week, every week, transmission may be prevented in all, or nearly all cases. However, they also demonstrate that adherence to this regimen among those in the clinical trials rapidly decreased over time. As a result, overall effectiveness was reduced to around 50%.
The message to Grindr members? If you yourself are using the PrEP medication at least 4 times a week consistently and without gaps, congratulations: It is extremely unlikely you will get or transmit HIV. Add a condom, and the likelihood approaches zero, plus you then also protect against other sexually transmitted infections, which PrEP by itself does dont accomplish. The studies say you are very rare, and that a good portion of you may in lustful moments mislead yourself about your level of adherence. Don't kid yourself or a playmate into a life-changing condition.
And if you're depending on others who claim they are taking PrEP, consider strongly an attitude toward anal sex that says, "If you're going to stick that pretty thing in me, you'd better have a rubber on it." Take care of yourself, you deserve it!
To Grindr, which no doubt profits from selling messaging to the manufacturer, and to Gilead Sciences, for whom anti-retrovial medication is a source of substantial profit: promote this form of prevention wholeheartedly, as it deserves. But tell the whole story, which requires you to say that in the real world it's much better than nothing but by itself not good enough.
Note: I studied statistics a hundred years ago, and it was difficult for me then. The statistical information I refer to above comes mainly from two trustworthy secondary sources: an article from Poz magazine published in July 2014 and a page called "PrEP Facts" from the website of the San Francisco AIDS Foundation. Both of these sources have links to the original work they report. Of course I alone am responsible for any misinterpretation of the information.