bearbandit Posted July 22, 2013 Report Posted July 22, 2013 Thank you - I realise I've become a one-man-band on the issue, but the way so many people just accept what their doctor says, I try to get people asking their doctors the awkward questions the doctors might prefer weren't asked... The UK system of approving drugs is largely the same as the US, except for the fact that all the work has to be be duplicated: the European countries don't trust the US drug companies. It's standard fare for Post Exposure Prophylaxis, but I'm unsure if it's actually "on-label" yet. I see little reason why it shouldn't, given that it's available in the USA. A common practice here is in monogamous serodiscordant couples the positive person can get onto treatment at a much higher CD4 count than would normally considered in order to protect the negative partner from infection. We're beginning to see the start of treatment as protection here, though it's going to be a long haul, I believe, before it becomes an acceptable idea to the British public, especially when you hear, as I have, "of course I'm HIV negative - I had test five years ago"...
fskn Posted July 23, 2013 Report Posted July 23, 2013 Bearbandit, wow, I'm surprised that early HIV treatment isn't accepted by the public in the UK, especially in light of the World Health Organization guidelines and the yet broader International Antiviral Society ones. Immediate treatment is the standard of care in the public health system in San Francisco. Paradoxically for the U.S., this means that people who cannot afford private health insurance but who do qualify for a local or state/federal program may have more options than people with the most restrictive private insurance plans. (Neighboring counties have less well-developed public health offerings, especially for sexual health, so the standard of care differs. There would of course be marked differences in other urban areas and other states, too.) It really upsets me when public acceptance -- usually serious bias, under the guise of moral righteousness -- limits access to effective medical treatment.
pghpigbtm Posted July 23, 2013 Report Posted July 23, 2013 Truvada is in fact two drugs (tenofovir plus emtricitabine) and it was my understanding that because of some of the issues with Truvada, Isentress (raltegravir - who comes up with these names, and who in the world thought that "isentress" was somehow more appealing as the commercial name of the drug than raltegravir???) is now the darling of the PrEP world because it is better tolerated than Truvada and because it accumulates better and persists longer in the genital tract than either of the drugs in Truvada. I was on a regimen of both of these drugs for three years and never had a single side effect from them. In addition, the combination knocked my VL to undetectable in less than 3 months. As has been pointed out several times now, side effects and effectiveness can vary significantly from person to person.
bearbandit Posted July 23, 2013 Report Posted July 23, 2013 Bearbandit, wow, I'm surprised that early HIV treatment isn't accepted by the public in the UK, especially in light of the World Health Organization guidelines and the yet broader International Antiviral Society ones. Immediate treatment is the standard of care in the public health system in San Francisco. Paradoxically for the U.S., this means that people who cannot afford private health insurance but who do qualify for a local or state/federal program may have more options than people with the most restrictive private insurance plans. (Neighboring counties have less well-developed public health offerings, especially for sexual health, so the standard of care differs. There would of course be marked differences in other urban areas and other states, too.)It really upsets me when public acceptance -- usually serious bias, under the guise of moral righteousness -- limits access to effective medical treatment. Largely, the British public wishes we'd just go away except when we're good for a scandal. I'm reminded of nothing so much as the British attitude to homosexuality in the in the seventies. The Government here thought that a couple of campaigns in the eighties would do, and have since left education work to the charities who are slowly going broke despite having apparently lucrative contracts with the government to provide education. We have young adults in the UK who know fuck all about HIV because to teach them about HIV would mean mentioning homosexuality (the infamous section 28, now repealed, forebade discussion in schools of homosexuality as just another form of sexuality). Guess who's testing positive at the clinics? Yup, the very kids who would have benefitted from what section 28 said was a no-no. The government have fostered a public attitude where you have to be at death's door to be entitled to benefits. I know of a case where a guy who was on dialysis pulled out his catheters and bled to death because he felt he couldn't go on. Already blind, and needing support to walk, he was judged to be capable of normal work, according to a letter received by his ex partner five days his death (I was the one seeing ex partner at the time and dealt with all the drunken two o'clock phone calls). I've had abuse shouted at me for simply using a walking stick: there's this health fascism going on whereby if you're not in perfect health you must be a benefits scrounger. And yet it's a four mile journey to pick up healthy food rather than saturated fat sandwiches. The UK is not a pleasant place to live.
fskn Posted July 24, 2013 Report Posted July 24, 2013 it was my understanding that because of some of the issues with Truvada, Isentress (raltegravir ...) is now the darling of the PrEP world For now, Truvada is the only FDA-approved drug for PrEP, so if a US doctor ordered Isentress to protect an HIV-negative patient, that would be an off-label use, and also much less likely to be covered by insurance. The references I've found say that Isentress, used alone, showed promise in a very small sample of convenience of women, and in a small-scale animal study. I didn't see any randomized, double-blind trials like the ones conducted with Truvada, but a doctor or medical researcher would of course have access to better search tools. Interestingly, Isentress has a shorter half-life than Truvada, so it was given twice a day instead of once a day. Greetings to you in Pittsburgh, by the way! I spent several years there and loved the town and the people. Your avatar makes me want to go back. ;-) Bearbandit, while the US was ahead in terms of decriminalization of homosexuality (except for 13 holdout states, whose loosely-enforced prohibitions were finally struck down by the federal Supreme Court in 2003), our sex education programs are worse than what you describe in the UK. Some states and localities teach abstinence, and deliberately avoid mentioning practical ways to avoid pregnancy or sexually-transmitted diseases. Some of those states teach creationism, to give you an idea of the lack of scientific awareness. Everywhere in the country, parents have an absolute right to excuse their children from sex education. Have you seen the new documentary about Turing, who was a victim of England's law against homosexuality? Maybe we should all move to the Continent for good medical care and up-to-date sexual mores!
bearbandit Posted July 24, 2013 Report Posted July 24, 2013 I hate to say it but most of the good moves in HIV protection have surfaced in the USA and them pitched up in Europe six months or so later. Well aware of your somewhat crazier compatriots' views on sex and sexuality (and tired of signing petitions about them!). I don't think the Turing documentary has yet been shown: I rarely watch broadcast TV so will probably just get the DVD when its available. I hate to tell you this but it was good old UK medicine that nearly killed me last year, and our sexual mores are very young as yes. Less than twenty years ago it was worthwhile buying an NTSC video player and copy a whole load of rental videos to copy time and again to make a bit of cash on the side. My partner went through customs with the video player whereas I had fifteen to twenty high illegal (at the time) cassettes in my back pack. Just as well I'd got that "I have been on a plane for eleven hours without a cigarette: do not impede my progress to a smoking area" face on. Isentriss is a bit of a pain, but it's only one extra pill out of the thirty I take daily. There's a new integrase inhibitor on the way, whose name escapes me, which will be once a day. Dolutegravir looks about right... ETA: unknown...
wood Posted July 24, 2013 Report Posted July 24, 2013 There's an article specific to the kidney effects here. Note that the elevated risk persisted even after the drug was discontinued.I'm really of two minds when it comes to PrEP. You're taking some heavy duty, expensive drugs that have potentially life-threatening side effects. I'd hate for someone here who's still negative to end up with permanent liver or kidney damage just because they thought they could take these drugs and get away with barebacking without consequences. Like Heinlein wrote, TANSTAAFL. If you're so scared of HIV that you're willing to expose yourself to drugs like these, then perhaps barebacking isn't right for you. I can't possibly imagine that any insurance program, private or government, would be willing to fork over the massive expense of PrEP (not to mention the risks) when there are plenty of other perfectly legitimate and much more inexpensive and safer means of dealing with HIV prevention (and that's the old familiar "ABC" method they routinely push in sex-ed). We're talking approximately $7000 per year when you can buy 150 condoms at Walgreen's for $35. What do you think they're going to tell you? And actually, given that there are other effective options out that, I think that might just be the right call. So yeah, I think PrEP is a dead end. Unless the price of HAART drops radically, which ain't on the horizon. Heres my issue with what you are saying. "The study examined the medical records of 10,841 HIV-positive veterans in the national VA health care system who were new users of antiretroviral therapy from 1997 to 2007. It was published electronically in the journal AIDS on February 9." 1) This is a study that has studied people from 1997 to 2007, not really in the current timespan. 2) all the people in the study were HIV positive, and most likely on other drugs also, any number of which can cause kidney damage 3) we have no idea what other drugs any of these people were taking, any number of which may work in tandem with truvada to cause kidney damage. I am not saying that PrEP is the only way to go, but I am saying that in my opinion it could be an excellent way to curb HIV transmission. Also while you mentioned condoms, we all know that condom use is not just the answer, otherwise no one would be on this board. I think that right now because truvada is GRAS (generally recognized as safe) the studies about PrEP should continue, and those in them should be monitered for kidney issues. I think its also imporant to look at PrEP in a different perspective. Maybe for the person taking it, it is a few years of it before they enter a stable relationship, vs a lifetime of medication if they become positive. A lifetime of medication will almost certainly have more health implications than a few years of one. Hell even a few MONTHS of excessive tylenol use can cause liver failure. Its all relative, for some people PrEP will be worth it, no questions asked. For others however it may not be. Personally I am going to talk to my doctor and get on it ASAP. Im not even having a lot of sex, but after daying a poz guy before, and seeing how HIV has affected friends lives, I dont want it, and will take any steps to mitigate my risk.
Administrators rawTOP Posted July 24, 2013 Administrators Report Posted July 24, 2013 it is a few years of it before they enter a stable relationship, vs a lifetime of medication if they become positive. That made me laugh. What does a stable relationship have to do with anything? I know of only one or two gay couples who've been together for 7+ years who are still monogamous. I knew one guy who was a bug chaser in a something like a 17 year relationship. He became poz a few years ago now - they're still together and he still goes out regularly to bathhouses to take loads.
wood Posted July 24, 2013 Report Posted July 24, 2013 That made me laugh. What does a stable relationship have to do with anything? I know of only one or two gay couples who've been together for 7+ years who are still monogamous. I knew one guy who was a bug chaser in a something like a 17 year relationship. He became poz a few years ago now - they're still together and he still goes out regularly to bathhouses to take loads. I agree, not everyone is monogomous, but not everyone goes out to bathhouses and takes loads either. I know more than a few couples that dont fuck around, but i know some who do too. Its all about communication.
fskn Posted July 24, 2013 Report Posted July 24, 2013 That made me laugh. What does a stable relationship have to do with anything? I understand the stable relationship sentiment -- shared health interests and relatively more sex with a known person might be risk reduction strategies -- but I agree that it's tenuous. An HIV prevention psychologist whom I dated years ago loved to joke that breaking up gay relationships would be a great preventive. He felt boyfriends were likely to bareback with each other, unlikely to know about each other's outside pursuits. (Just to show that we're all human: He let me start fucking him bare early in our relationship, and cumming inside soon after, and he mentioned swallowing twelve loads in one night at a sex club! How could I not want to date a guy like that?) Setting aside the possibility that people who tell each other they're monogamous may not be, I find it disturbing that monogamy is often considered moral, and that any idea of morality might be a factor in access to medical care. The same can be said of a negative man's insisting on condom use, which lots of people outside (and inside) the gay community elevate to the level of a moral choice. In deciding eligibilty for PrEP, actual sexual behavior, not expected behavior, is what matters.
Administrators rawTOP Posted July 24, 2013 Administrators Report Posted July 24, 2013 I know more than a few couples that dont fuck around Are the ones you know who are monogamous under 5 years into their relationship? I know a lot of those too. But what a lot of gay guys don't realize is that if the relationship doesn't become open then it will inevitably end - with very rare exceptions. Knowing that, I don't quite believe all the guys who say they're monogamous - they're just not admitting they're having sex on the side.
nymanhole Posted July 24, 2013 Report Posted July 24, 2013 I have been on tenofovir only for the last several years as a treatment for Hep B. Has worked very well and I have had no side effects (so far). I am HIV Neg and have wondered at times if the Tenofovir alone has helped keep me neg all this time. Anyone know if tenofovir alone is effective as a PreP?
wood Posted July 24, 2013 Report Posted July 24, 2013 I have been on tenofovir only for the last several years as a treatment for Hep B. Has worked very well and I have had no side effects (so far). I am HIV Neg and have wondered at times if the Tenofovir alone has helped keep me neg all this time. Anyone know if tenofovir alone is effective as a PreP? most likely. http://en.wikipedia.org/wiki/Tenofovir "A Cochrane review examined the use of tenofovir as a pre-exposure prophylaxis against HIV infection. It found that both tenofovir alone, as well as the tenofovir/emtricitabine combination, significantly decreased the risk of contracting HIV"
RawAssBreederCMH Posted July 24, 2013 Report Posted July 24, 2013 Also, be aware that just last month, most insurance companies will NO LONGER cover Truvada for anyone who is not already poz.
fskn Posted July 24, 2013 Report Posted July 24, 2013 Also, be aware that just last month, most insurance companies will NO LONGER cover Truvada for anyone who is not already poz. I'm curious what country you're in and where you read that. There is no legal basis for that in the US, since Truvada for PrEP gained FDA approval last October. Only plans with drug formularies and plans with some sort of categorical exclusion can refuse to cover Truvada for PrEP when a patient meets the prescribing criteria. An insurer can revise a medical plan to add an exclusion, but these are usually annual, calendar-year contracts, so a change in June is unlikely. Various people have posted on the forums that their plans are covering Truvada for PrEP.
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