Getting PrEP: Step One
November 20th, 2015
After several weeks of effort, I was able to find a doctor within the Blue Shield HMO plan who prescribes Truvada as Pre-Exposure Prophylaxis, PrEP. The source of my primary care is now through APLA Health and Wellness at the Gleicher / Chen Health Center in Baldwin Hills.
This feels a bit ironic to me. For years I’ve sporadically supported AIDS Project Los Angeles. I’ve participated in the AIDS Walk from time to time and contributed to various programs but they weren’t particularly applicable to my life. They were just a “good organization” with whom I didn’t much interact.
Thursday evening was my first appointment. There was almost no one in the waiting room and the staff was more than pleasant. The employees seemed to be genuinely enjoying their work and their interaction with patients. The office, which is only a year old, was spotless, well lighted, and comfortable.
I didn’t see my doctor yesterday.
Before Truvada is prescribed, a series of tests needs to be run. There was blood work taken for two HIV tests (one which identifies more recent exposure), a liver test, as well as the usual lab work. Urine and swab samples were taken to indentify any sexually transmitted infections. And, of course, there were questions about recent sexual history and practices.
The nurse-practitioner was friendly, informative, and willing to answer questions. She was aware that some personal questions are uncomfortable and made the process feel professional rather than invasive.
We discussed the changes in care and protection over the years and the hopes for the future. Although we both celebrated the changes we’ve seen, she expressed concern about how a younger generation sees HIV like it sees diabetes, not terribly serious. A long time AIDS care provider and community advocate who has lost many friends to the disease, she’s disappointed that more people are not availing themselves of PrEP. I share that feeling.
But now I wait.
In two weeks I will return for my results and, if everything is proper, I’ll get my prescription and join the ranks of those who are proactively protecting themselves from the HIV virus.
Continuing the hunt for PrEP
November 10th, 2015
First I eliminated the doctor who practices in Santa Paula, 70 miles away in another county. That’s a bit too far to drive every three months during office hours and I certainly wouldn’t want a primary physician that far away.
Then I called the doctor who doesn’t do PrEP at all; he only does HIV testing. Which I do myself using OraQuick, the at-home testing kit.
Next was the doctor who does do PrEP, but not through my insurance. He only accepts patients with my insurance if they are already HIV positive.
Finally, I called the last number (the two remaining doctors practice together). I was transferred to a voice message of someone who I believe said that he is the PrEP coordinator for APLA.
So there is still some hope that this final contact will come through and I will finally have access to the program.
I heard back from the PrEP coordinator and it turns out that the doctor does take my insurance, administers PrEP, and is accepting new patients. He’s 6 miles away and only about a half-hour drive, so I’ve changed my primary care doctor and have an appointment for next week.
This has not been an easy process. But it has proven to be possible, something I was not sure about for a while.
The PrEP quest continues
November 7th, 2015
On Thursday I shared with you the surprising difficulty of finding a doctor within my health network that will prescribe pre-exposure prophylaxis (PrEP), a proactive approach to avoiding HIV infection.
Since then I’ve received help and suggestion from several sources, including in the comments here at BTB. Thank you.
I dropped by the new West Hollywood outpost of the Los Angeles LGBT Center and, though it was after hours, the young man at the desk sought to be helpful. I’m not sure that I was able to adequately explain that I needed to know whether they would honor my insurance or that I needed to find a primary care physician, but he did provide me with the main number of the Center.
I also had a response from a pharmacist who was able to recommend two sources: the LGBT Center, which he warns has a two month waiting list, and an HIV treatment center 25 miles away. Neither of these options seem ideal.
But yesterday I did hear back from Blue Shield. And they were able to provide me with a comprehensive list of all of the doctors in the network who offer PrEP service in the Los Angeles area. There are a grand total of five.
Now I need to see if any of them are willing to add a new patient.
My quest for PrEP
November 5th, 2015
Today Larry Kramer, the grandfather of ACT-UP, released a scathing indictment of the current status of AIDS research. And though he was in parts incoherent (gonorrhea statistics don’t speak to AIDS research funding), his frustration has merit. Bureaucratic structures don’t lend themselves well to efficiency and as decades slip by with the oft-promised cure remaining just out of sight, it becomes easy to agree that the National Institutes of Health are “more interested in Alzheimer’s than AIDS and Congress is not interested in AIDS at all”.
Kramer is the king of rage. His anger has propelled a life-long fight against institutional power, even as Kramer has gained access to levels that most of us could never achieve. And though many of his demands over the years have been met, his bleak view has never been at loss for a target of his fury.
But, frankly, a life lived in outrage is exhausting. And my temperament doesn’t allow me to see the world through the prism of loss and lack.
Like Kramer, I lived through the years of fear and frustration in the 80’s and 90’s and have lost friends to AIDS, though likely not on the same scale. And I too have seen Very Exciting Breakthroughs For A Cure that turned out to be anomalies and overblown wishes. I now approach each new cure-around-the-corner claim with the skepticism of the man who discovers that he did not, after all, buy the Brooklyn Bridge.
But I have experienced the arc of the epidemic. I recall when nothing was known about Gay-Related Immune Deficiency (as it was first called) and then when the Human Immunodeficiency Virus was identified. I know the growing panic during the two-week response period. I remember the breakthrough of the mid-90’s when the “drug cocktail” of antiretroviral treatment caused the death rate to plummet. And since then I’ve watched a plodding but steady progression towards management and sustainability and prevention.
There has been amazing progress.
Yes, HIV continues to impede the full potential of lives. Even in the best of cases, it brings a tedious drug regimen, social stigma, and the fear of unknown possible side effects.
But unlike Kramer, I just can’t see the glass as half full and draining rapidly. Irrespective of whether the NIH appoints a new head of the Office of AIDS Research in a timely manner, I still see the glass as three quarters full with a steady drip increasing the level.
And one of the more recent developments that has given me hope that the viral endemic can finally be beaten has been the two pronged approach of undetectability and insusceptibility.
For most (but not all) HIV infected persons, current drug treatments reduce the level of virus in the body to such a point that it cannot be detected. And the practical reality is (though officials are hesitant to stake this claim) those with undetectable levels of HIV are not transmitting the virus to others.
And more recently, within the past couple of years, it has become evident that pre-exposure prophylaxis (PrEP) in the form of a daily dose of Truvada can cause an HIV negative person to be virtually immune from contracting the virus. By virtually immune, I mean percentages in the high 90’s, a better success rate than condoms. Though anecdotes do not speak definitively, at this point the collective street-knowledge of PrEP is nothing short of astonishing. As a small example, an acquaintance of mine who is seriously dedicated to condomless receptive anal sex and who was one of the early participants in PrEP tested negative again yesterday after a couple years of regular “unsafe” sexual practice.
In combination, these two therapies may not be the cure that Larry Kramer and the rest of us hope for, but if correctly targeted and implemented, we could see HIV in America go the way of tuberculosis in a generation.
Of course, that requires thoughtful and committed leadership. And I do have skepticism about the commitment of government to properly design or implement such a plan.
I suppose it’s possible that a driven and charismatic leader will be appointed to the Office of AIDS Research who will throw political expediency out the window and press towards targeting the communities that most need regular and thorough testing and who is willing to buck powerful elements of the AIDS industry who have a vested interest in opposing PrEP. I suppose someone could don a cape and come to our rescue.
But the history of the AID epidemic suggests otherwise. For the most part, power and government have impeded rather than advanced response. It has been mostly gay men, and their allies (let’s never forget how lesbians stepped up to a crisis to which they are least directly threatened) who have been on the forefront of knowledge and power, who played personal guinea pig, who recrafted the social acceptability of practices within their own community, and who fought in the streets for the right to take drugs that would save their lives.
So I suspect it will be up to the gay community to create a culture in which all of those who HIV positive are tested and place on appropriate medication (and fight for the funding to make this a reality) and all those who are sexually active outside of a monogamous relationship and who are negative go on PrEP (a likely tougher funding fight). We will have to be the ones who make “Truvada whore” a badge of responsibility and sexual freedom.
Yes, we will need to be conscious of possible side-effects and aware that all drugs impact different bodies differently. But – at least so far – it appears that until a cure for AIDS is discovered, PrEP is a promising approach to personal protection and community health.
So it’s time to do my part. It’s time for me to join the Truvada whores, time to take PrEP.
Over the past months, several of my friends have gone to their doctors and signed up. They are all happy with this choice and found it to be a painless process. I’m not so lucky.
My employer provides me with health insurance through Blue Shield of California (for which I am appreciative). My plan is an HMO and though that is more limiting than a PPO, it hasn’t really impacted me much. Until now, I have no complaints. Or, not many.
When the plan was implemented, Blue Shield assigned me to a primary care physician based on location. And as I live near Koreatown, my doctor operates out of an office which caters primarily to older Koreans.
I’m not Korean, but the diplomas were from reputable schools and as my medical history is not complex, I figured that any doctor can provide basic care and I had no reason to change. And, frankly, it felt a bit prejudiced to discount a doctor’s ability to treat me simply because I’m not in his target demographic.
And for the most part, all has been fine.
Yes, there was the time he pressured me to become vegetarian (ummmm, no!). And, as I discovered in the waiting room, I’m not a big fan of Korean soap operas. But he was attentive and personable and I just don’t see a doctor that much.
On my last visit, I told my doctor that I was interested in PrEP. He had no idea what I was talking about so I asked him to look into the subject so that we could pursue that direction. He said nothing.
Finally, having waited for months without a response, I called my doctor’s office and explained to the receptionist that I’d like to see the doctor and would like to discuss PrEP with him and could he please be ready for this. She said she’d ask the doctor.
The receptionist called me back. And said I should find another doctor. One that deals with HIV. Because my primary care physician wouldn’t want to give inadequate care.
It’s probably only my imagination that heard “go away, go away, don’t touch me”.
But fair enough. I’m certain that his knowledge of his community allows him to be aware of cultural particularities which give him greater insight into the care of his specific demographic. And I probably would be better served by finding a doctor who is familiar with the trends in the lives of gay men and specific medical issues of which to be aware.
Besides, I live in Los Angeles. There are more than 25,000 doctors in this county. How hard can it be to find one that specializes in gay health (or “men’s health” as it is sometime euphemistically called)?
As it turns out, it’s not so easy.
My insurer’s website easily allows you to search for another primary care physician. You can search by gender, language spoken, medical specialty, or name. You can even put in other search terms. But gay and LGBT had zero results.
So I turned to Yelp. Here, results were more promising. Several reviews discussed whether the doctors were welcoming of gay men and women. Some even discussed PrEP. Best of all, Yelp’s ad generator gave me the names of medical groups who specialize not just on gay men but on getting them onto PrEP. Yay!
Back to the website I went. The most prominent men’s health group didn’t show up. But fine, another did. So I submitted my change request and waited.
So back to the website I went and sure enough, my primary health group is still the Korean group.
This time I didn’t rely on the doctor’s name showing up in the grid to mean that I could select that doctor. I called or emailed the doctors instead. And it turns out that none of them accept Blue Shield HMO. Zero success.
Back to online searching. Viola, there are handy guides to tell one just who does administer PrEP in LA County. But sadly, they seem to either be upscale and take PPO or other high end insurance plans or else they cater to those less fortunate and take Medicare. For someone who has (what I’ve assumed to be) a perfectly fine but no frills plan, there seems to be nothing.
In desperation, last night I called Blue Shield. And the lovely young women who handled my call agreed to search their database for doctors in LA who take my insurance plan and who specialize in PrEP (who knew it had to be a specialty?). After 20 minutes holding, she came back to tell me that she had no success. But she promised to keep trying and to call doctors until she found me one.
However, I’m not over-confident of hearing back. Because when I suggested that she broaden her search to include gay health or men’s health she became flustered and confused. I’m guessing that in whatever culture she live, one doesn’t say the words “I’m a gay man” out loud.
But I’m not giving up. I do have some leads.
One of the doctor’s offices – one that doesn’t take my plan – generously came up with some names of others who might be able to direct me. And the local LBGT center is a resource that I can approach. Word is that they’ve opened a new outreach office in West Hollywood whose sole purpose is to get gay men on PrEP and I’m hopeful that they might be able to help.
I am confident that eventually I’ll find a doctor that takes my insurance plan who is willing to provide this regimen. I live in a city that is, for the most part, inclusive and welcoming of gay people. I have many many options and opportunities.
But I cannot imagine trying to go through this process in a red state. Or in rural California. Or in a city without an established gay community.
So maybe Larry Kramer has a point. PrEP should be available to every gay man – or every other person in a high risk demographic – through every doctor in the country, not just the handful who “specialize” in gay health. We would not find it acceptable if this level of difficulty were faced by those who sought preventative measures for anything else? Why is it acceptable that doctors can turn away patients simply because they “don’t deal with HIV issues”?
Maybe Kramer’s right. Maybe it is time for a little rage.
CDC Gets Behind PrEP
May 16th, 2014
Federal health officials recommended Wednesday that hundreds of thousands of Americans at risk for AIDS take a daily pill that has been shown to prevent infection with the virus that causes it.
If broadly followed, the advice could transform AIDS prevention in the United States — from reliance on condoms, which are effective but unpopular with many men, to a regimen that relies on an antiretroviral drug.
It would mean a 50-fold increase in the number of prescriptions for the drug, Truvada — to 500,000 a year from fewer than 10,000. The drug costs $13,000 a year, and most insurers already cover it.
Aaron Hicklin of Out picked up the thread, summarizing some of the thinking behind the CDC’s new stance:
Although doctors advise patients to take the PrEP pill, Truvada, in conjunction with condoms, the move is an acknowledgement that after decades of public health education, condom use is in sharp decline among gay men. A C.D.C survey last November showed that the number of gay men reporting unprotected sex had risen nearly 20 percent from 2005 to 2011. Given the stigma around admitting to unprotected sex, that figure is probably much higher. Now, the hope is that by encouraging gay men who have unprotected sex to take Truvada, the number of new infections will continue to fall as scientists continue to hunt for a cure.
Even though PrEP as a regimen is not exactly new, Tim Murphy’s piece in Out last September rekindled what’s now a vigorous debate among gay men about whether or not PrEP should be offered more widely. Box Turtle’s last post about PrEP, here, is now at a healthy 69 comments (yup) with two main threads emerging. One side, now joined by the CDC, essentially says that the status quo focusing on condoms isn’t working and a new model which recommends both PrEP and condoms is needed. The opposing view, shared by Michael Weinstein of the AIDS Healthcare Foundation, worries that advocating that gay men get on PrEP will not only lead to an explosion of other STDs but also to higher rates of HIV because gay men won’t take the pill as directed and will use it instead as an excuse for unprotected sex:
“If something comes along that’s better than condoms, I’m all for it, but Truvada is not that,” said Michael Weinstein, president of the AIDS Healthcare Foundation. “Let’s be honest: It’s a party drug.”
Some of the concerns have been more directly pragmatic – many assume PrEP is too expensive and, also, many clinicians either haven’t been on board or haven’t been well-informed. Back to today’s story in the NY Times:
Advocates said there were several reasons there had been little clamor for the drug regimen. First, while many doctors prescribe statins as prophylaxis against heart attacks, for example, only AIDS specialists are likely to prescribe AIDS drugs as prophylaxis. But uninfected gay men have no reason to see AIDS specialists, and usually see general practitioners if they see doctors at all.
Also, Truvada is expensive. However, private insurers and state Medicaid programs have thus far generally covered such prescriptions, and Gilead has a program covering co-pays and giving Truvada to the uninsured.
While many in the gay community still share Weinstein’s fears, the CDC’s new position is getting a lot of heavy-hitting support – today, 69 HIV/AIDS groups cheered the CDC’s new guidelines calling them “a powerful additional tool in the AIDS response.”
The Hysterical Gay Men in the Attic
April 10th, 2014
First, this, a black man talking about the first time he saw two black men, and no white men, in an airplane cockpit:
“Do you know, I can’t believe it but the first thought that came to my mind was, ‘Hey, there’s no white men in that cockpit. Are those blacks going to be able to make it?’ And of course, they obviously made it — here I am. But the thing is, I had not known that I was damaged to the extent of thinking that somehow actually what those white people who had kept drumming into us in South Africa about our being inferior, about our being incapable, it had lodged somewhere in me”
This is Desmond Tutu of South Africa, talking about how deeply ingrained are the things he heard about black people growing up that they still, to this day, after decades of fighting for his own equality, influence him.
I sense this same thing in gay people — the same tortured assumption that what we heard when we were growing up is really true, that gay men can’t control themselves sexually, that they will never bond for life, that they will never care about themselves or make good decisions when it comes to sex. This is the message from the people who call Truvada a “party drug” and it’s the same message older men put out there when the Pill came along, that women would use the Pill as an excuse to go wild, that they weren’t responsible enough to take a pill every day, that it would lead to a higher rate of STDs, etcetera, etcetera, etcetera. Yes, condoms are the only thing that prevent many STDs, but is that why many clinics won’t even mention to gay men that Truvada is out there? Imagine if Planned Parenthood refused to tell women about the Pill because they decided it would make women stop using condoms?
This is what’s happening currently with Truvada — we don’t trust gay men enough. We don’t think that if we tell gay men in a clinic that they can get on Truvada, and it will help prevent HIV, but they also need to use condoms to prevent other diseases – we assume that they will simply go wild, just like women were presumed to be wild, illogical people back in the late 60s/early 70s. Women proved those straight men wrong and we gay men can do the same.
Enough of all this religious shaming. I keep hearing that gay men don’t care about themselves, that they are stupid, that they need to just put on a condom already, and it sounds like preaching to me. It doesn’t sound rational. It sounds like a lot of us hate ourselves, or other gay people, like we’ve internalized what we’ve heard our whole lives about those partying, oversexed gay people.
We gay men are capable of making rational decisions as much as the next person. Human beings, in general, have trouble mixing arousal and logic, but this is not anything special to gay men – as Mark S. King always points out, our mothers liked to bareback too, and yet they were (eventually) trusted with the Pill and told to also use condoms to protect themselves fully.
We need to talk about Truvada and PrEP not because it’s a cure all but because it’s asinine that here we have this wonder drug and we can’t bring ourselves to educate sexually active men about it. There’s something wrong with that picture.