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Barriers: Reasons why vulnerable people stop PrEP


fskn

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It's been many years since I moderated here on BZ and clearly the underpinning software has changed.  But moderators, if it is possible to untangle the interesting but off topic political part of this thread to a different place I know I and others would appreciate it.     Thanks BTW, I definitely appreciate your work here.  

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Thanks, @JimInWisc!

To everyone: It's easy to self-moderate. If you want to talk politics (or branch off into some other related but separate topic) you can create a thread in another forum and post a link here. Simply copying the URL of the new thread and pasting it into a message here will generate a neat call-out.

That was how I created this thread, in fact. The conversation about barriers to PrEP started in a thread about whether someone should get an HIV test or experience the thrill of not knowing. As much as I wanted to continue the tangent about PrEP, I wanted to respect the prior participants and leave space for their conversation to continue. 

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3 hours ago, fskn said:

Thanks, @JimInWisc!

To everyone: It's easy to self-moderate. If you want to talk politics (or branch off into some other related but separate topic) you can create a thread in another forum and post a link here. Simply copying the URL of the new thread and pasting it into a message here will generate a neat call-out.

That was how I created this thread, in fact. The conversation about barriers to PrEP started in a thread about whether someone should get an HIV test or experience the thrill of not knowing. As much as I wanted to continue the tangent about PrEP, I wanted to respect the prior participants and leave space for their conversation to continue. 

So very true, and yet....

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On 1/30/2022 at 8:52 PM, fskn said:

A thread in another forum,

veered off into discussion of why people facing the greatest risk sometimes stop PrEP. I'm starting a new thread here to continue the conversation. Please add your own observations, @hntnhole, @WiChaser, @MrsTatt00, and others.

In surveys, common reasons that young MSM in San Francisco give for stopping PrEP are:

• Losing health insurance

• Believing that their sexual risk has dropped

Correlates that researchers observe are:

• Precarious housing

• Precarious employment

It's hard to be certain, because people may be embarrassed to admit that they have stopped PrEP, and may tell counselors what they think the counselors want to hear.

Negative signals are often more informative than positive ones, but harder to get. For example, a few years after she had started her small business, I told the owner of my local bakery that she should routinely overbake, count what's left at the end of the day, and cheerfully throw it out. The value would be in the data. Even if she could survey all of her late-afternoon customers, she could never know for sure what they would have bought if it had been on the shelf, in front of them.

Insurance changes: Despite Medicaid expansion, generous Affordable Care Act subsidies, and the preventive care mandate, any change in insurance can interrupt PrEP access for months. Without a universal health insurance plan, I don't know how to solve this. For now, the focus ought to be on cheap, convenient bridging, such as giving clinics money to dispense 30-day bottles of Aurobindo's low-cost generic Truvada on the spot.

Reduced risk: Often imaginary, this gets at the sense of invincibility that @hntnhole mentioned. Maybe logging pills taken each day, and sexual activity, and seeing a current risk score would help; some PrEP studies provide apps for this purpose. If sex tracking were integrated into hookup apps like Grindr, people might be more likely to try it. Intermittent or "2-1-1" PrEP seems to be a vital alternative when people believe they no longer need daily PrEP.

Precarious housing: So many health care processes require a fixed address. ACA applications, public benefit recertifications, insurance ID cards, drug rebate coupons (where still necessary), and other bureaucratic nonsense should be reduced to the bare minimum and be made available from mobile Web browsers on cell phones. People who don't want to mail documents, and who can't receive documents in the mail, shouldn't be excluded. Patients should always have the option to pick up PrEP prescriptions near where they are at the moment.

Precarious employment: It's time to decouple all health insurance from employment. It's also time for stupid, backward public and private medical offices to offer evening and weekend drop-in hours. If we want to protect vulnerable people, staffing up is worth the cost. To be really blunt, people with economic resources, political influence, and good health care enjoy fucking vulnerable people. What comfortable middle-class bottom doesn't like taking dick from an edgy thuggish badboy top now and then? (I'm deliberately speaking in stereotypes.) Investing in protecting vulnerable people protects everyone.

The fewer barriers, the more people will use PrEP and the more HIV infections will be prevented. I'd like to see small quantities of Truvada/generics, with easy-to-follow "2-1-1" instructions, handed out without prescription at sex clubs, glory hole places, cruising areas, and gay events/parties. I'm always the first to say that PrEP should be used under medical supervision, but open access might be the only way to reach high-risk people who don't engage with the medical system. (Paradoxically, the problem is worse and more insidious in jurisdictions with universal health insurance. For example, for the first few months of the COVID-19 vaccination campaign in Ontario, Canada, there was no way for undocumented immigrants, immigrants with legal status but still in their first three months of residence, visitors from other Canadian provinces, and homeless people who had lost their health cards, to get vaccinated. No Ontario health card, no vaccine, and fuck you! Every health system needs flexibility.)

Maybe throw a home HIV test in the package, knowing that it's a lousy, second-generation diagnostic that can only tell you your HIV status as of 3–6 months ago. It's cheap, easy, private, and better than nothing!

Of note, the 2021 CDC PrEP guidelines have relaxed safety monitoring. For people under 50 with good initial kidney test results, kidney monitoring is now yearly. Throw in a coupon to visit an outpatient lab (or a chain pharmacy?) for a kidney test, and hope some people use it, but don't let safety monitoring be a blocker! HIV treatment regimens carry a far greater risk of side effects than do HIV prevention regimens.

In my view, non-medical reasons to stop PrEP may come down to mainly two things:

- Lack of money. Which nicely sums up what losing health insurance, and precarious employment and housing have in common;
- Prejudice. And perhaps internalised prejudices but in all cases that being on PrEP is a sign one is a slut or a bottom.
(And the reason given that some people don't think they need PrEP anymore is a lot like this. When in a relationship one should be monogamous might be a prevalent idea. But fact is - right or wrong - that it's not uncommon for people to have sex with someone else than their partner, husband or wife).

It's hard do stay out of political discussions when talking about these kinds of things, especially when it concerns the financial aspects (health insurance) but also the (religious) viewpoints about relationships and sexuality are often politicised. 

 

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On 2/5/2022 at 10:34 AM, fskn said:

Thanks, @JimInWisc!

To everyone: It's easy to self-moderate. If you want to talk politics (or branch off into some other related but separate topic) you can create a thread in another forum and post a link here. Simply copying the URL of the new thread and pasting it into a message here will generate a neat call-out.

That was how I created this thread, in fact. The conversation about barriers to PrEP started in a thread about whether someone should get an HIV test or experience the thrill of not knowing. As much as I wanted to continue the tangent about PrEP, I wanted to respect the prior participants and leave space for their conversation to continue. 

Thanks, @fskn. I agree and I think that part of the thread has run its course. The conversation veered off organically based on quite a few of the points on PrEP availability and vulnerability, which begat the other points. Hopefully we can move on. 

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