The Queerty Interview

Is life for long-term HIV survivors far worse than we want to admit?

Sean McKenna, as part of a portrait series by photographer David Meanix.

Last December I attended the most moving, transcendent World AIDS Day program I have witnessed in years. That’s not saying much, of course. These evenings are usually well-meaning but maudlin, featuring tearful eulogies while we hold up candles that drip on our fingers as we revisit personal losses that I put to rest a long time ago. Okay, clearly I have issues with grief.

But this event, organized by long-term AIDS survivor Sean McKenna in New York City, inspired and reawakened something in me. The program featured speakers and entertainers (this is New York, after all) who rose above the perfunctory nature of these events and made it something truly beautiful. It ached with loss, yes, but it also had an emotional honesty that never felt melodramatic. And it made me want to know Sean McKenna better.

I tend to present my life with joy and good humor (and let’s face it, I have never had a challenging emotion that wasn’t worth stuffing down as far as possible). Sean, on the other hand, wants us to face the harsh realities of today’s long-term survivors. He has sent me messages to chastise me for painting too rosy a picture. He puts me on the defense a lot. In other words, Sean McKenna does exactly what a good advocate should do. He bears witness and holds people accountable.

In my interview with Sean, we wrangle over our different styles, the purpose of AIDS history, whether fear is a useful tool, and his insistence that life today for long-term survivors is far worse than any of us are acknowledging.

We have very different attitudes about being long-term survivors. After all, I call my blog, MyFabulousDisease. Would you agree?

Actually no, I agree with a great deal of what you say but there’s nothing really ‘fabulous’ about it as we age.

Oh, so we’re going to go there right away, eh? I will admit I was being cheeky when I named it My Fabulous Disease, but isn’t there a place for some levity?

We wouldn’t be here if we couldn’t find joy or humor, and “fabulous” worked for me before my friends started getting ridiculous kidney problems and cancers. Before they became home bound by soft bones and the continued isolation. Some even opting out of their meds or not getting them for cognitive reasons. I have great respect for what you do. The world needs both of us.

Sean McKenna
Sean McKenna (photo: Aline Paley)

You’re speaking up for those for whom decades of HIV hasn’t been easy, or at least it isn’t now.

I’m speaking for people who have recently lost their husbands and have to sell all of their belongings to be able to access the proper care. I’m speaking to people of color who have never been serviced correctly.

When I wrote the piece “Stop Bludgeoning Young Gay Men with Our AIDS Tragedy,” you were offended. Like, really offended. I was making a point about respecting our history but not using it to shame younger people, but you weren’t having it.

I was offended. You don’t tell children to forget slavery, the Holocaust, Vietnam or any other world war. History is not about shame. I’ve never used our war on AIDS to shame anyone. In addition, I believe it gave a lot of younger folk the permission to not give a shit about those of us who paved the way for PrEP. It doesn’t help garner respect for long-term survivors.

Yes, but did you ever, in your youth, ask a WWII veteran to sit down and tell you all about it? My own Dad was an Air Force colonel, and we never discussed the wars he fought in. I give younger people some slack on this topic. Human nature is self-centered. We have to experience life for ourselves.

I give younger folk more credit than that. My Uncle died in the Korean war, he was Dad’s best friend. We were taught about it in schools, so yes, I was curious.

Mark S. King

I know “the AIDS years” of the 1980s have shaped everything I am today, and I believe that history should be preserved. My objection is when we try to scare the hell out of younger people about those nightmare years so they will respect us more or change their risk behaviors. Scare tactics about the past don’t work. If so, why would any new war begin?

When I was in school we had bomb drills. I was scared but it didn’t change my history or the fact that it needs to be at least a reference. I have never tried to scare young people with our war.

I think our different points of view might be reduced to this: I see AIDS in the rear-view mirror. You see it in the passenger seat.

Unless I am misinformed and there is a cure, then you are in the driver’s seat, too. I feel an obligation to communicate our history, not pretend it didn’t happen for fear of scaring young people. Besides, Larry Kramer scared the shit out of a lot of people and boy, I am glad he did.

When I met Larry last month for the first time, to interview him for POZ Magazine, I couldn’t bring myself to tell him I had a blog called My Fabulous Disease. Can you imagine his reaction? Oy.

You give people a laugh and hope and I respect that, but there isn’t anything I’m afraid to tell Larry. He was not about laughs. I like to think he would be proud of my tenacity.

What do you want to see change? What rights and services are not being provided us, and do you mean long-term survivors specifically, or all people living with HIV?

Well even those that are positive now will someday be long-term survivors, no? I would like AIDS service organizations to realize that those of us who were given a death sentence in the 80’s and 90’s are not doing so well. We didn’t have the advanced meds, we were the ones they tested them on. I can’t believe that you don’t know any long-term survivors from those days who are living in poverty and often times without any services at all. People with bone and cognitive issues, people who are homebound, because that is the reality of long-term survivors today and time is not on our side.

Actually, I know plenty of longtime survivors. We’re all doing well, although bone density issues have cropped up. That is probably more to do with my being a privileged gay white man, I imagine, with access and resources.

I have heard of too many early deaths, be it from side effects or just giving up and I hear of more every day. It is because of constant needling of the GMHC that they now have a working Buddy Program and are creating a Long-Term Survivor Hub, that and (GMHC Executive Director) Kelsey Louie’s willingness to listen to me. (Sean convinced GMHC to reinstate its Buddy Program in 2015, specifically to offer support to long-term survivors.)

At community-based events like Positive Living (the last remaining weekend conference/retreat for and by people living with HIV/AIDS), I get to hang out with a much more diverse collection of people living with HIV. And yes, they are struggling. It is happening behind a dark curtain of racism and poverty.

That curtain needs desperately to be lifted as we are dying again. Some of my friends say it’s like the 80’s all over again.

The 80s? In what way? Do you believe that? It feels extreme. As someone else who was there, today ain’t nothing like the parade of funerals we had then.

We may not be dying in the numbers that we were in the 80’s, but the stigma, lack of services, lack of someone to listen and help, is too close to what happened in those early years. We’re losing each other when we should be serviced and respected. So yes, in many ways it’s just like the 80’s. We watch the fortunate survivors thrive while having arthritis at 40 or 50 years old, which is not normal, makes it hard to even get out of bed. Support groups have dried up, not that we can all get to them. The difference between now and the 80’s, besides numbers, is that nobody is desperately trying to save us like back then.

I want to hear more about this, because I think it would surprise a lot of people. Please say more about longtime survivors who are homebound, dying of side effects or giving up. I don’t think it is the dominant view, although social stigma is another thing altogether.

So many of my friends have lost their insurance and are now living on disability alone. You can’t live a healthy life on that amount of money. Too many have written to tell me they’ve given up. Too many have died most recently in their 50’s and 60’s whether it be heart attacks caused by the med side effects or cancers that we are 40% more likely to get. It’s a bleak existence, living below the poverty level, having cognitive issues at an early age and trying to understand a system that is quite happy to lose us.

I do believe a lot of people would prefer that long-term survivors hurry up and die already.  I mention this specifically in an article on HIV stigma I wrote for POZ Magazine, saying, “They remind us of our darkest days, these unwelcome relics, and though we ignore them their haunting persists, in the daylight of the grocery store and the darkness of the bars. We avert our eyes and anticipate their extinction.”

I couldn’t agree more with your quote. We are a reminder of those dark days but that is no reason for our community to sweep us under the rug. We’re just like you said, “unwelcome relics.” Certainly not what veterans of a war deserve.

Who else is addressing the plight of longtime survivors in ways you admire? Any programs or organizations that are handling these issues well?

Tez Anderson in San Francisco, founder of Let’s Kick ASS (AIDS Survivor Syndrome) is to be admired, and some healthier long-term survivors are waking up to it but that is it, other than what I talked GMHC into doing, and that’s a crime. (NOTE: Watch the “Definition of Brave” Town Hall Forum in San Francisco, about long-term survivors, below.)

There’s only one person who comes to mind who is addressing the issues of longtime survivors? That suggests there isn’t a lot going on, or you’re not exactly impressed with what is.

There are a handful of us but cognitive issues is one of my most embarrassing traits so I’m sure I’m forgetting people.

Let me plug some folks I appreciate in this arena. I like the Reunion Project out of Chicago by TPAN, which has been holding events in major cities, and the recent Seniors with HIV conference in Ft Lauderdale sponsored by SunServe. I do see HIV media making aging with HIV a hot topic: stories about our unique challenges are on every HIV site, and Positively Aware just devoted an entire issue to it. Now, some of these are specific to longtime survivors and some are more generally about aging with HIV, but it’s happening. I see people like Tez, Matt Sharp, Jeff Berry, Sean Strub, Rae Lewis-Thornton, Greg Cassin and others as being pretty forward thinking on this.

Let’s just say I started talking about it four years ago. That’s lives lost in the meantime. I agree that we are more in the public eye but it’s one thing to be talked about, another to be serviced.

So what, then, would you like to see being done? What programs need to be offered, and by whom?

I want respect and services before we die. I want services for homebound long-term survivors. I’m quite proud of how GMHC is following through on this. But many of these agencies are focused on PrEP, trans rights, etc., which are all admirable and all necessary. Just don’t toss us aside.

There is a real poignancy in your saying “I want respect,” Sean. You’ve mentioned it a few times. I share that sense of wanting due respect, for what we endured and what we accomplished as a community 30 years ago. That said, no one has much use for the past, it seems. I’m talking about people generally, but even younger, newly diagnosed HIV positive people. They’ve got their own challenges, their own lives to lead. We’re not great at looking backward as a species. Which is where this conversation began, actually.

If we ignore history we are doomed to repeat it. There are ways to educate younger people without scaring the crap out of them and maybe in this day and age of immediate gratification we should pause and look back once in a while. I want to thank you too for keeping our spirits afloat with your blog for those years that we didn’t foresee these consequences.

Well, I’m both more optimistic and more cynical than you. I think the world today is a far better place for people living with HIV than it once was, but I don’t think people care about history all that much. Most everyone who reads this will be long-term survivor themselves. Most others will scroll right past.

Not true, you would be surprised but time will tell.

Okay, you’re a hard nut to crack but I admire your tenacity. We share a very close DNA strand about these things. Let’s be friends.

I thought we were!

Well, we’ve never done lunch. That’s a requirement.

Lunch is on, but you’re paying.

Done.

Mark S. King is Queerty’s HIV/AIDS and health writer

 

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37 Comments

  • Kieru

    “I think our different points of view might be reduced to this: I see AIDS in the rear-view mirror. You see it in the passenger seat.”

    This was perhaps the most shockingly ignorant line in this article.

    I’m just old enough to have been affected by the fear of the 80s and 90s… when treatments existed but were costly and had terrible, terrible side-effects. People weren’t afraid… they were terrified. It was hard enough to be open about your sexual orientation, but then to also worry the guy you were about to meet might be “infected”.

    Today’s youth has grown up in a utopia by comparison. Kids are able to come out as early as they are comfortable with… to greater rates of acceptance than ever before. We have LGBTQ+ role models and healthy sexual relationships displayed across all forms of media. They live in an era of highly-effective ART and, now, PrEP.

    The problem with that Utopia is that it isn’t real. It’s just a walled-off garden and outside it is the reality that HIV infections among this group are on the rise. And that’s why HIV cannot be “in the rear-view mirror”. That sort of blasé attitude (It’s ‘just’ HIV; there are treatments) is why we’re seeing an uptick in infections.

    • 1898

      I couldn’t agree more. Growing up in the late ’80s and the ’90s, I remember seeing one of my parents’ friends die of AIDS; I remember people being afraid that you could catch it from a handshake or a public toilet seat; I remember hearing a TV news anchor report that it was possible to catch it via “deep tongue kissing”; I remember sex-ed classes in middle school in which we were told that not using a condom was a potentially deadly decision; and I remember my mother crying when I came out to her because she thought for sure my being gay meant that I was going to die of AIDS.

      It’s great that society moved past most of that crap, but the pendulum has swung too far in the opposite direction with regards to prevention and education. People do not realize and do not talk about the long term issues related to the disease and related to the meds, and that includes Truvada (PrEP). If someone plans to be on Truvada long term, they’re going to face some of the same issues that long term HIV+ people face. I’m not knocking PrEP — it’s a good tool for some groups of people — but it comes with a cost, and there are a lot of people who don’t follow the regimen correctly, which is even worse.

    • ChrisK

      “they’re going to face some of the same issues that long term HIV+ people face.”

      You seem very sure. Do you have any statistics to back up your opinion?

    • Kieru

      @ChrisK – Truvada (the only PrEP available in the United States), like most ART, carries with it the risk of kidney and liver dysfunctions. It’s a more serious risk for HIV+ patients as those patients are taking other drugs with the same side-effects, but it’s something HIV- persons need to consider.

      Every 3 months a PrEP user goes in to ensure they are HIV-, and to ensure that they aren’t experiencing any sort of liver or kidney issues. These issues (as well as others) are well-documented on Truvada’s PrEP-specific side-effects page:

      https://start.truvada.com/side-effects

    • ChrisK

      That’s the point though. Just like everything else they’re getting regular check ups to see if anything is amiss. I’m sure the Dr would have them come off of it if they found something not right.

    • Kieru

      That doesn’t negate the fact that the drug carries with it legitimate risk; a risk that increases the longer you are on it.

    • dwes09

      @ChrisK:
      It is not simply the short term effects that are worrisome. Some of the worst issues with the superseded anto-retrovirals are the ones that did not surface for years and didn’t go away when those drugs were stopped (disfigurement through fat redistribution and facial wasting, cancer, heart disease and so on). Drug trials only last a short time, those on PrEP will be taking it for the rest of their lives. Viral diseases have never been easily curable, and HIV seems to escape control with vaccines. The drug companies are fond of referring to HIV as “easily manageable like diabetes” while failing to note that diabetes still leads to amputations, shortened life, neuropathy, blindness and more even when “well managed”.

      PrEP works remarkably well to prevent transmission, but its long term safety for users is still essentially unknown. If a user discovers they have (for example to use a disease encouraged by antiretrovirals in the past) lymphoma after 10 years, stopping the PrEP is clearly no assurance of survival, and could represent the shortening of a life for the sake of convenience.

    • pudman56

      I consider myself a long term person with HIV. I do not consider myself a survivor. I live, and I live as well as my next door neighbor. I don’t think it’s how long and how well you’re doing with HIV/AIDS as it is whether or not you want to throw in the towel and be a martyr or do your best to be as healthy as you can be and just appreciate every day you have.

      There are a lot of genomes of HIV and I don’t remember where they placed me but through all my 20+ years of drug treatment, including a 12 week treatment for Hep C. I was told more than once that I’ll die of a heart attack before I die of AIDS (my heart is fine).

      We’re all going to die. Wake up and smell the roses. No, there is nothing pretty about AIDS, and I hope against hope that I never have to change my status from a 3 letter acronym for a 4 letter one, but for all these years I get blood work every 3 months and every single time all of the test are in the normal range. Some are near the low/high end, but all within the normal range. The point that I am making is I think we don’t think of HIV/AIDS as personal.

      Until the day I die I will live with the grief of loss, but I will look at life as a, well, I’ll just look at it as a wonder.

      I’m not claiming that anyone is right or wrong, I’m saying HIV/AIDS and how we look at it from our own first hand experiences is just that, ours. I choose life as long as I can. And when I can’t, via whatever reason, then I’ll learn to let go, but I’m not starting early.

    • Heywood Jablowme

      @dwes09: “those on PrEP will be taking it for the rest of their lives.”

      ??? – Why on earth do you assume they will be taking it “for the rest of their lives”??? Seriously – into their 40s, 50s & 60s? (You’re old enough to know better!) There are plenty of scenarios where they would no longer need it:

      a) Someone remains HIV-neg and eventually settles down with someone also HIV-neg. Even if that’s just for a few years, PrEP could and SHOULD be stopped in that situation.
      b) Someone, well, let’s say he smokes too much and “ages badly” and everyone else loses sexual interest in him (lol); PrEP no longer needed.
      c) Someone loses interest in anal sex so PrEP is no longer an issue.

    • ErikO

      Exactly, Mark just goes on and on about bareback sex and how it’s perfectly fine for men who are HIV+ to bareback and those idiots on Truvada to bareback, and even his blog claims that being HIV+ or living with AIDS is a “fabulous disease”.

    • ChrisK

      Hey Shithead. If you’d of actually bothered yourself to read the article you’d realize he already brought it up (My Fabulous Disease) and talked about it at length. Just proves you’re not coming here to read but to spread your ignorant hate as usual.

    • truckproductions

      ChrisK calm down my god..

  • MediaGuy

    It’s not really a mystery that these medications can have long-term negative outcomes. But, as already noted, these negative outcomes have been underplayed and minimized. Not because anybody’s trying to cover anything up, it’s just that when life saving treatments came available, everyone breathed a sigh of relief and figured that whatever the negatives of the meds, it was better than dying. They were right.

    • dwes09

      PrEP, however, is not a life saving medication, but simply a way to avoid use of condoms and other risk-reduction techniques. It is quite possible that it will have negative long term effects as well. All antiretrovirals necessarily have a strong effect on our cell chemistry.

    • MediaGuy

      dwes09. I have certainly considered PREP but didn’t end up doing it for exactly the reasons you mention. The possible, unknown long term outcomes. The world is gonna end tonight because we agree on something.

  • He BGB

    I found this very interesting and educational especially about the bone problems and arthritis and 40 percent more cancer risks but it should have been edited down a litttle. I think the wishing they would just die and stop reminding us of AIDS probably is more prevalent in SF. I don’t find that attitude in other cities. SF being a tiny penisula, where it is crowded you are faced with that more in the Castro, etc. I want to read it again to really understand more. There’s alot to take in, racism in treatment, side effects, so much here. I wish there was more info in what long term survivors are doing about finances. Nobody expected to be living 3 decades later after quitting their high paying job, for example.

  • Chris

    To me, the issue is “what residual knowledge/wisdom do we want this and future generations to glean from our struggles?” As people die off, direct memory/knowledge of any historical crisis fades; and as direct, first-hand knowledge fades, in come the pseudo-facts, stereotypes, exaggerations, and wishful thinking.

    I don’t want this generation to think of HIV as a death sentence, the way I saw it develop among my friends and even a sibling. But also, I don’t want them to think that it’s easily manageable and no worse than a cold (until such a time as it becomes relatively-easy to manage like a cold).

    Balancing between seeing it in my rear view mirror versus oncoming in the passenger’s seat remains a struggle for me. But just because I’m worried doesn’t mean that I attach stigma to the illness. So yeah, we need to be more thoughtful about what we leave behind for future generations of gay men. And while I’m at it, I hope that, eventually, they come to look at these times the same way that we look at the Middle Ages: as full of superstition and ignorance.

  • assiandude

    Before HIV, we thought we had it all under control. Sex was great, fun, and we were fighting for liberation. Unrestricted sex was part of that fight and it became a strong bonding part of our culture and expression. However, it only took about 10 years after our open sexual expression before HIV arose to decimate us. Although it was obviously around in monkeys for unknown years, it took about 10 to 20 years for HIV to find and infect millions of people. HIV became an epidemic because unprotected sexual intercourse is highly effective for disease transmission and the Gay sexual behavior in the 60s to 80s was a perfect breeding ground for this disease. It has nothing to do with being gay or straight, it’s just a biological fact that multiple partners with unprotected sex raises the risk to transmit pathogens. If Gay men forget this fact and feel that HIV is “managed” and we go back to the 70s, we’re again inviting something new and perhaps equally terrible.

    This is a numbers game. The more people having non-monogamous unprotected sex the higher likelihood of disease spreading in a population. Older Gay men, who lived through the massive losses during the 70’s and 80s are giving warnings about current changes in sexual behavior, but obviously this is being resisted as “slut shaming” which has become a Gay sin. I don’t know what young gay men are doing these days, but if it looks like the attitudes are becoming similar to pre-AIDS and the ability for sexual contact is even easier than when I came out. In my 20’s and 30’s the average gay man had so many different sexual contacts that straights and lesbians were shocked. The average number was over 1000 for someone with AIDS but close to that for gay men without AIDS but who were out for about the same time period. Perhaps the gay men of today are more sexually conservative and more apt to enter into monogamous relationships but I would be surprised if that were true for the rank and file. I don’t think that taking Truvada would dramatically change the amount of sex, but I expect that it encourages unprotected sex and if so, we are asking for another epidemic of something, whether it’s completely resistant gonorrhea, syphilis, or some new devastating organism that finds an inviting situation to set up shop.

    It’s a shame to be negative about Truvada, because it and other pre-exposure drugs will decrease the number of new HIV infections which is a great thing. However, if it increases the number of other infections and leads to the development of resistance or yet a new terrible disease it’s obviously not a good path.

    Perhaps as distasteful as it sounds, Gay men could mimic heterosexual culture, or perhaps develop some other cultural norms, such as limiting unprotected sex to men they know and trust or with whom they want to develop a LTR. It’s not 100% but it might bring the number of risky sexual encounters down to heterosexual levels. It would still involve taking Truvada with its long term risks, but when both partners agree to monogamy they can stop. It would give more meaning and trust to that relationship.

  • pozavatar

    When AIDS reared its’ ugly head people were horrified because very young men started showing symptoms that only occurred in very old men. Now some HIVers have dogged enough bullets to make it to Seniorhood. Perhaps LTS survivors are experiencing the indifference, apathy and neglect that many other senior citizens suffer. HIV is like a spotlight in many ways.

    • ChrisK

      Good point. That’s something I hadn’t thought of.

  • Scotty63

    Its called living in the past…Sean…get over it! Mark has his act together…The silent majority here live just fine with our HIV, we are compliant, healthy and sexually non infectious. Unfortunately that doesnt make for great copy…

    • Kieru

      I don’t know… I think there is a difference between being comfortable with your diagnosis, and being complacent about the disease itself.

      Being comfortable with your diagnosis is fantastic. It’s highly-treatable today with side-effects becoming more manageable with every new therapy developed. You can live a long and healthy life, and you can have a fulfilling sex life with minimum risk of transmission through the combination of condoms and PrEP.

      But… would you not intervene if you saw a friend or family member engaging in high-risk behavior? There is nothing wrong with being comfortable with your own diagnosis, while also encouraging others toward behavior that keeps them negative.

    • 1898

      “Silent majority” eh? Where have I heard that before… oh yeah, from conservative heterosexuals who want the gays to sit down, shut up, and stop asking to be treated equally. So basically your attitude is that you and your acquaintances are fine, therefore everybody else must be fine too?

    • ChrisK

      @Kieru
      So in other words, he can’t say that he’s doing fine or risk some dumbass thinking it’s all a-ok or a busy body like yourself who wants everyone to feel shame.

    • ChrisK

      @1898
      Wow. You just really ran with that one. I didn’t read that at all. Scotty is just saying not everyone is doing bad. As a matter of fact many are doing just fine. Of coarse you can’t say that because it doesn’t fit into the sex shamers world view.

    • QueertyFan

      @Kieru “But… would you not intervene if you saw a friend or family member engaging in high-risk behavior? ”

      No, absolutely not, unless that activity included illicit drug use like Meth or it was causing some permanent damage to their health. But if “engaging in high-risk behavior” is just bare-backing, then no. We are all adults. We don’t need you or the government deciding for us what is “high-risk behavior” and what isn’t. I don’t use condoms and haven’t for the last 20 of my 28 year HIV diagnosis. I’m undetectable, adhere to my meds and I inform all my partners. Not one of my past relationships who were negative ever became positive and for the last 10-15 years, I mostly only date other POS guys. But the shaming thing needs to end. You want to have sex with condoms, be my guest. But I find it funny that so many Queers get up in arms when the Conservative religious right tries to tell us what to do, how to live our lives and how to act, but then turn around and do it to our own community.

    • LARRY

      WOW…..just WOW! who the eff do you think you are to disparage the millions of folks we have lost to this hideous disease? Silent Majority? eff you! I spent too many years in ACT-UP fighting so pigs like you could live. I hope you NEVER have the trials and tribulations of an AIDS diagnosis…oh wait maybe I do…hit me up when you succumb and ask me if I am willing to sit down and shut up while you waste away you self-entitled sanctimonious piece of sh**.

  • Connie Rose

    I keep reading comments about how PREP is taken so that one doesn’t need condoms. And I’m confused because NO WHERE DOES IT SAY THAT’S HOW TO USE IT.

    Maybe if people were using it correctly there would not be an 80%increase in other STDs among the lgbt community.

    • Kieru

      That’s the downside to PrEP … because it ‘technically’ allows for bareback sex, people do so outside of monogamous relationships. So naturally there is an uptick in STIs.

      Where PrEP really shines is in monogamous serodiscordant relationships. In that scenario an HIV- partner can engage in bareback sex with his or her HIV+ partner with minimum risk of infection, particularly if the HIV+ partner is numerically undetectable.

      It’s a level of intimacy many of us take for granted.

    • seaguy

      Most PrEP users who do not also use condoms with PrEP likely did not start barebacking when they got PrEP. They were likely already having bareback sex, so going on PrEP was the best way to reduce the chance that they get HIV.

  • Heywood Jablowme

    Mark King says: “I couldn’t bring myself to tell [Larry Kramer] I had a blog called My Fabulous Disease. Can you imagine his reaction? Oy.”

    Come on, I’m sure Larry Kramer is aware of that blog! Although I’m surprised he was too polite to b!tch about it.

    • ChrisK

      Kramers also now a big PreP supporter so things do change.

  • QueertyFan

    @Kieru But all drugs have side effects. I was on Lipitor for more than 15 years before they figured out the long term damage it can cause and I was taken off. It actually killed my grandmother. And after having Non-Hogkins Lymphoma back in the early 90’s, I was left on an Acid Pump Reducer for more than 10 years because the Chemo recked my stomach and I had an issue regulating stomach acid. But once they found out what long term usage caused, I was taken off.

    Now I’ve been HIV+ for 28 years (more than half my life) and started back when all we had was AZT. I spent the last 30+ years living in Snn Francisco and recently moved up to Portland. And yes, i watched the majority of my closet friends die around me back in the 80’s. So fast forward all this time, yes, I’m very concerned about what these drugs might eventually do to me. I own and have always owned my own small business and have had to pay more my own insurance, always. In the beginning I paid about $300 a month out of pocket for meds until ADAP came along. And thankfully, I’m healthy with a T-cell count in the high 900’s and have been undetectable for almost 20 years.

    Maybe it was because I lived in a hotbed of new medical treatments or had good doctors, but I honestly don’t know one single person who is these issues Sean speaks of. I’m not saying they don’t exist, they must. But he’s making it sound like it’s a new epidemic of people dying of drug related illnesses, being shut-ins and being ostracized. Why is this the first we are hearing of this? As someone in the entertainment industry who travels weekly across the country, Canada and aboard, if this was truly as bad as he makes it sound, I think more people would dbe talking about it. And again, I stress, I’m not saying it’s not happening to some people, but not on the levels he making it sound.

    Like most everyone of my HIV pos friends in their late 40’s and 50’s, I take my single pill once a night with my other meds and I don’t think about my HIV. It never stopped me nor does it stop me now from getting dates (speaking to his comment about being ostracized – although I realize middle America is not as open minded as the coastal cities) . I’m not having medical effects (so far) for being on pretty much every new drug that came out over the 28 years. And I’ve not had a single friend tell me they can’t afford their meds or are deteriorating because of the meds. If Sean feels this is a bigger issue than people realize, can we get some statistics? Can we get direct stories? Just to say it’s happening isn’t good enough. And if he’s right, I’m happy to get behind his cause and fight for changes. But honestly, I’m not seeing at all.

    So I don’t say this to be argumentative. I honestly want to know where this is happening and if it’s as rampant as he says. Because if it is, then shame on the Queer news that I read almost daily for not covering it. I’m just skeptical that it’s as rampant as he says.

  • Scotty63

    @[email protected]

    I think some of u neg guys think too much about HIV, to the point of a really unhealthy degree…u put way more thought and energy into statistically unrealistic transmission risk and overblown side effect risk than neccessary…u r neurotic and obsessed about a life with HIV!

    Here is the real deal for me and all my poz buds…we r undetectable, compliant, healthy, and honestly dont spend much time thinking about HIV…get over it…move on…get a life.

  • Scotty63

    Larry…how exactly is living a healthy happy life with HIV disparging the millions who have died from AIDS? People like u are a nusiance, like a gnat buzzing in the ear. Heaven forbid any progress be made, any normalization of a life with HIV occur…You always try to suck the oxygen out of the room with your horror stories of the dead, the treatment failures, and any other negative thing u can dig up.

    Well news flash! You dont own this
    disease, you dont get to brow beat people into submission with your faux outrage or untreated PTSD…So please just Shut-Up…and lets focus on the progress being made and the near normal lives those of us with HIV/AIDS now enjoy living

  • Realityis

    I never liked what Mark King had to say anyway. I’ll go with Sean McKenna all the way

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