I have to say that I am very excited to see Alexandria Ocasio-Cortez (AOC) take notice, and better yet take action, on the issues of HIV, prevention and drug pricing in the US. I have a lot of respect for her fearlessness, her tenacity, and most of all her ability and willingness to speak truth to power and privilege. What a great addition to the US political scene.
I love that she really went after the CEO of Gilead Sciences about the price of their product Truvada, used in HIV treatment, but also in HIV prevention as pre-exposure prophylaxis, or PrEP. Apparently, Truvada, at least as PrEP, is subject to some patents owned by the Centers for Disease Control, which is declining to enforce them or to collect royalties on them. Gilead disagrees with the validity of those patents. I’ll leave that one to the intellectual property lawyers and to the politicians who ought to be demanding answers about the abandonment of public investment to private profits, as AOC and some of her colleagues are doing.
When I see a screaming headline that “People are dying for no reason” because of the price of Truvada as PrEP, I have to take a step back to reconsider what all of that means to me, a gay man living with HIV and diagnosed late (advanced HIV infection) in 1997-1998 (I was fortunate enough to cover the end of year holiday period with my little drama). Here I am in the 22nd year after my diagnosis, very much alive. I know that journalists, and least of all headline writers, can misconstrue and oversimplify, but careful messages get understood.
The PrEP Story
It took a long time to prove and with a few controversial trials, but the combination of tenofovir disoproxil fumarate and emtricitabine (TDF/FTC) has proven itself to be an effective tool to prevent HIV infection for people exposed to risk. All people, not just gay men, with some caveats for the length of time it takes one of those molecules to reach protective levels in vaginal tissues…but it does get there. It’s interesting to call it by its scientific generic name because in much of the world generic versions that cost a lot less than the name-brand. In the few hold-outs, including the US, the name brand is still covered by patents that prevent generic competition, keeping the price up.
In Québec, where I live, the nature of the distribution of prescription medications has meant that people have not been paying the full sticker price for the name brand product for quite some time, and now there are no fewer than three generic substitutes that have satisfied our regulatory tests of equivalence. No special payment program, and because the name brand was already in use for HIV treatment (in combination with other drugs), it was available for PrEP even before we had guidelines for doctors to follow.
The Patent Game
The same company has a new version of this drug combination that it is testing and applying to have approved for use as PrEP (and which is already approved for use in HIV treatment, so there we go again). The big claim for the new version is that it minimizes the side effects of the original, which could cause problems with kidney function and bone density for a certain number of those taking it. Notably, a number of studies have shown that those problems correct themselves over time after the person stops taking it, but the person also loses the protection from HIV. So, good for them for continuing to research and finding a version with fewer side effects.
Does everyone need the new version? No, just the people with the side effect problems. Does the company want you to think almost everyone has those side effect problems? Looks like it from their marketing efforts, but not so much if someone sues them over the side effects of the original. And just to underline a coincidence without wishing to allege any wrongdoing, the company is bringing out this new improved version just as their patents on the old one are expiring all over the place. Just sayin’.
HIV and Death
Here’s where I have a problem with what the Representative from New York has to say about the issue. She seems to be suggesting that not being able to access PrEP is a death sentence. What does that mean for people living with HIV?
After the introduction of protease inhibitors as part of effective treatment combinations in the mid-1990s — 1996 in Canada, just in time for me, I might note — the rates of mortality in rich countries with access to the treatments plummeted. The graph, picked form the internet, shows it pretty clearly. We die less than we used to, with our treatment supply uninterrupted, at least.
These days, in our wealthy countries, we speak of HIV as a manageable chronic illness, and focus on problems related to aging with HIV — that problem we couldn’t have conceived of in the 1980s when everyone around us was dying. We are more likely these days to die of classic things like heart disease, liver disease, various cancers, the complications of diabetes, things that may be aggravated by HIV or by the treatments we have taken to control it. We die less of the classic complications that would define AIDS in someone infected with HIV.
It’s true that in the US that access to treatment is often through special programs whose funding has to be fought for on a recurring basis, because the lack of comprehensive health care for the population (like in every other wealthy country) is too radical an idea to be adopted. The current administration’s cuts also threaten the global response, as PEPFAR and the Global Fund have helped make that radical graph curve above a reality for a number of other countries. Apparently generosity and compassion are in short supply these days.
Stigma and the Death Message
One of the biggest problems we have always had working to end HIV is the stigma that is attached to it. Whether it is because of the ways in which HIV is classically transmitted (sex, drug use) or the often irrational fear of “catching it”, stigma puts the brakes to a lot of efforts to encourage people to get tested, to sensitize the general population about HIV, to be as adherent to medication as we need to be to stay undetectable, to be able to take our place in society and enjoy all the same rights and, yes, obligations as everyone else.
It’s been a tightrope act to navigate between messages that encourage people to stay negative and messages seeking to reduce the fear of people living with HIV, and we haven’t always done it well. I’m not sure we’re really doing it as well as we ought to today. We know that fear doesn’t last as a motivation, and we know that instilling fear of HIV infection to encourage prevention efforts actually contributes more to fear of people living with HIV. Not helpful.
What we really need to do is communicate a more pertinent and accurate portrait of what it means to live with HIV today, in all of our very different circumstances, to reduce fear and increase empathy. There are plenty of good reasons not to want to get HIV that don’t involve making people afraid of us. We might be living longer, but we have challenges that I wouldn’t wish on anyone. As I often said after my diagnosis, I really never intended to become this high maintenance in my life. Well, here I am, and I’m apparently doing an okay job of it.
So getting back to our allies, please take the time to understand the whole context. Don’t stigmatize the million-plus people living with HIV in the US by waving around a death message in defense of access to PrEP. Do you know that PrEP is not even recommended if your HIV-positive partner is on effective treatment and undetectable (actually, under 200 copies/ml)? Talk to the AIDS organizations in your state, in your city. Talk to the passionate activists — including plenty of HIV-positive folks — who are your allies on a whole host of other issues, too.
Just know what you’re talking about and think about the consequences of how you say it.
1 comment:
Nicely said, Ken! ❤️
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