My doctor shamed me for getting tested

[rvwnsd]

Truvada comes off patent in December 2017. Teva Pharmaceuticals is already producing a generic and selling it through two companies to patients in England, Canada and Australia. It is also approved for sales in France and South Africa and I believe it is the Teva generic for sale there. The Teva generic I believe runs about $40-60 dollars a month, but I could be off on the cost a bit. I can ask my aussie friend on the exact cost. They run the Australian program. Hopefully, the Australian government will officially approve it. They are meeting with him today (go get 'em Phil).

 

If Gilead wanted to, it could do a slight modification of the drug, file for another patent, and it would remain a brand-name drug with no generic equivalent available in the US. Even if they did that, insurance would likely still cover it given the money its use can save over the long run. Additionally, "generic" does not equal "cheap." A generic asthma medication I was taking cost more than $200 per month.

 

In terms of quoting a 1% or less bone loss, that is the average. For someone who has a family history of osteoporosis the risk could be higher. One has to weigh the risks and make an informed decision. Using my asthma as an example again, one of my meds increases susceptibility to respiratory infections. That means I am very susceptible to bronchitis or pneumonia, particularly when my immune system is down after having a cold. It can also cause thrush if I do not scrupulously rinse my mouth after using it. However, that med is what keeps me breathing. I gladly accept the risk of bronchitis (and the antibiotics that accompany it) because the alternative is not breathing. Some people think I should experiment with other drugs. Fortunately, my doctor is not one of those somebodies.

 

I agree that PrEP is a good solution for many people. However, it is not a solution for everyone. Repeatedly chiding those who do not wish to take Truvada as PrEP is another form of shaming. It needs to stop, as does the shaming of people who choose to take it.

[Juan Vancouver]

I think Floyd has been very clear with his recommendation. If I read correctly (and I read attentively) he expressly mentioned it is not for everyone, but anyone who is considered at a high risk should definitely consider it.

 

I'd be curious as to where you see instances of shaming people who won't take it.

 

I think you might be misconstruing what I wrote? I compared this subject to climate change denialists. What I thought I clearly wrote is that now the facts are clear. Anyone at risk can prevent infection if they take this drug correctly. Anyone denying this fact and crying that condoms are the one effective way is technically wrong.

 

This doesn't mean that I purport that everyone should take it. Doesn't mean that if you chose not to take it you are wrong.

 

It's your body. Your choices.

 

This is somewhat different to anti vaxers. Their choices greatly affect everyone around them. Your choice to take or avoid truvada is just for yourself.

[mike carey]

Hopefully, the Australian government will officially approve it. They are meeting with him today (go get 'em Phil).

As an aside, the Australian Government has recently approved a Hep C drug that used to cost $AU100k p.a. on the Pharmaceutical Benefits Scheme.

I'd be curious as to where you see instances of shaming people who won't take it.

I think Floyd was referring back to the title of the thread.

[Juan Vancouver]

I think Floyd was referring back to the title of the thread.

 

Actually I was referring to this comment:

 

Repeatedly chiding those who do not wish to take Truvada as PrEP is another form of shaming. It needs to stop, as does the shaming of people who choose to take it.

[mike carey]

Ah, ok Juan.

[LookingAround]

I view Juan's comments as on the money. But I have seen other escorts view condom use as the "religious test" of being an "observant gay" and deride PrEP use. They are, of course, sadly mistaken and history will prove them so, but I thought the comment referred to others' comments (I'll say it, I thought of Killian James' comments) and not Juan's. Not sure what Floyd meant, but that is where my mind went.

[LADoug1]

Dawn Smith is the CDC's expert on condom effectiveness and she is the one who has been saying 70% and has been saying it for at least several years. She first reported it at CROI (Conference on Retroviruses and Opportunistic Infections) 2013. It was the first study of condom effectiveness since 1989. But in 1989 the report was also 70%. So that number is unchanged really in 26 years.

 

http://www.hivandhepatitis.com/hiv-aids/hiv-aids-topics/hiv-prevention/4038-croi-2013-consistent-condom-use-stops-70-of-hiv-infections-says-cdc

 

The 80% figure you are quoting I believe relates to condom effectiveness against HIV transmission in vaginal intercourse, not anal intercourse. It is 80% vaginally, but only 70% anally. That is mostly because condoms were not designed and never meant to be used anally. We've been using them because that's all we have. And it is better than nothing. But it isn't "safe" sex. It is merely "safer" sex.

 

Truvada is as close to "safe" sex as we have now. As I've said, and as every study has shown, no one who has taken it as directed every day has ever seroconverted. The prn dosing of the French study showed a reduction of 86%, which is still better than condom usage.

 

In fact, as far as people on PrEP, or people who are TasP (Treatment as Prevention -- HIV +/undetectable), having sex without a condom is not considered unsafe sex anymore according to the CDC. They now refer to it as condomless sex, not unsafe sex.

 

As far as long-term consequences, we know those. Truvada was approved for HIV+ patients in 2002. It is hardly a new drug. It's risk profile is well studied and understood. And long-term risk for PrEP can be avoided by frequent periodic testing which is part of the protocol. Any kidney and/or liver (to a much lesser extent) is picked up during routine screening and if detected, the drug is stopped and function is returned to normal very quickly. There are some reports of slight bone density loss which is easily compensated for with including a daily Vitamin D pill (a significant number of people are Vitamin D deficient anyway).

 

And we are sadly aware of the long-term consequences of seroconverting. Medically, the consequences are serious but manageable. There are even studies now suggesting that HIV+ patients are starting to live longer than similar HIV- patients assuming they receive competent medical care. This is because they are seeing their health care providers every 3 months. As opposed to most men who don't see a doctor until they have a problem that takes more effort to cure. People on PrEP will also have that same benefit of improved doctor/patient relationships.

 

Now it the most serious consequence seems to be the shaming and stigma that far too many of our negative brothers heap upon our positive brothers. I know of positive men who are told they should just kill themselves. People use the term "clean" on the apps, as if being positive is dirty. I've personally had positive men tell me on Scruff or A4A, "I'm positive, undetectable. But if you don't want to meet me because of that I understand". The rejection they have suffered is palpable. And it is disgusting to me.

 

Yes, a vastly wider group of people should be on PrEP. There is no doubt in my mind. Nor in the doubt of virtually every AIDS service organization in the country. And there is certainly no doubt in the minds of the CDC.

 

Or in the words of Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, at this year's National HIV Prevention Conference:

 

"The science has spoken," Fauci concluded. "There can now be no excuse for inaction."

Actually there has been a PrEP user in Florida who did seroconvert. And he was very diligent about taking the drug as directed. It is a brand new event and will be publicized soon. I don't have any more information at this time.

[Floyd_Taylor]

Actually there has been a PrEP user in Florida who did seroconvert. And he was very diligent about taking the drug as directed. It is a brand new event and will be publicized soon. I don't have any more information at this time.

 

Until there has been an actual confirmed case, I'm not willing to say that there has been. At some point someone undoubtedly will. We know that many have seroconverted using condoms. So even if a few did seroconvert on PrEP, it doesn't change the fact that it is still vastly more effective than condoms. But there have been these rumors for several years and have never been confirmed. So absent confirmation with lab-confirmed blood titers, we can so no one has seroconverted.

 

But my position is that there are certainly some people for whom PrEP is not an appropriate choice and is clearly contraindicted for. People with chronic liver and/or kidney disease, osteoporosis, the inability or lack of commitment to take it every day or to maintain follow-up care and testing regimen. There are certainly other valid reasons not to take it such as someone is taking a break from sexual activities, someone is in a committed monogamous relationship (although 46% of all new HIV cases are reported within a committed relationship). But I do believe most people should at least consider it and discuss it with their doctor. No choice is wrong based on that person's individual situation and assessment and no one should be shamed for their choice whatever it is (unless they are criticizing PrEP Users as #TruvadaWhores while they use it themselves. Hypocrites are fair game.). But I do believe a lot more guys should be on it because it is a vital tool to help defeat HIV and should discuss it with their doctor. And I sure as hell believe that doctors should never, ever, under circumstance, judge or shame someone for their sexual choices. Or other choices for that matter.

[rvwnsd]

I think Floyd has been very clear with his recommendation. If I read correctly (and I read attentively) he expressly mentioned it is not for everyone, but anyone who is considered at a high risk should definitely consider it.

 

I'd be curious as to where you see instances of shaming people who won't take it.....

 

For starters, referring to people who do not take Truvada as "people who won't take [Truvada]" is a mild form of shaming. The implication is the people who do not take Truvada are in some way lesser or are bad due to a refusal to take it. However, the comment that I think truly exemplifies shaming is:

 

I have frequently compared those still clinging to the "condoms only" message to sufferers of Stockholm Syndrome. ...

 

Stockholm Syndrome, or capture-bonding, is a psychological phenomenon in which hostages express empathy and sympathy and have positive feelings toward their captors, sometimes to the point of defending and identifying with the captors. How is this not an attempt at shaming those who do not take Truvada into changing their minds about taking it?

 

One could easily compare those who are taking Truvada to sufferers of Stockholm Syndrome as they are being held captive by the drug. That would also constitute an attempt at shaming, albeit shaming them out of taking it.

 

Lastly, Floyd refers to "condom only" people more than once in his posts. Labeling is another form of shaming. Let's leave the labels and comparisons to sufferers of a psychological disorder out of the discussion. Truvada usage, like condom usage, is one way to prevent the spread of HIV. Both methods have their pros and cons and those who choose to use one, the other, or both should be treated with respect by each other.

[Juan Vancouver]

Oy gevalt!

[rvwnsd]

Oy gevalt!

Ask a question, get an answer.

[Floyd_Taylor]

.A new study by researchers at UCLA shows that Truvada is as safe as aspirin. Probably safer.

 

http://www.metroweekly.com/2016/01/study-prep-is-as-safe-as-aspirin/

[Guest]

.A new study by researchers at UCLA shows that Truvada is as safe as aspirin. Probably safer.

 

http://www.metroweekly.com/2016/01/study-prep-is-as-safe-as-aspirin/

Interesting that the article in your link didn't say where this article was published, so one could take a look at it. The article (which is not a scientific study, but just mentions the study) also states" Five major studies on PrEP were compared with two major studies on the safety of aspirin — which an estimated 50 million Americans take. The researchers compared the prevalence of side-effects in the studies." Well, the prevalence of side-effects is not generally what most physicians or the medical community would consider a measure of safety. The prevalence of side-effects is a separate question.

The writer of that article wrote "Reversible effects included mild decreases in creatinine levels and small decreases in bone density — though no serious complications were reported as a result of either of these factors. " Anyone with a medical background would know that a decrease in creatinine demonstrates an improved function of the kidneys, not the other way around. And as a person who has had fractures due to osteoporosis myself, as well as family members who've had that problem, let me assure you that osteoporosis is not an empty diagnosis; fractures can be life-changing. If you know of a prospective, randomized study which actually looked at fracture rates among Truvada versus non-Truvada users over the long term (over 10 years at least), please provide a link to the study (as opposed to some dude talking about a study he read somewhere, although he can't quite remember where).

It's interesting that the Canadians don't seem to agree with the 80% figure, let alone the 70% figure quoted by the CDC site, although obviously the CDC is a reputable source:

http://www.catie.ca/en/fact-sheets/prevention/condoms

There are several reasons why the level of protection in these studies may not reflect how effective condoms can be at reducing the risk of HIV transmission:

 

• Although couples reported using the condoms consistently, they may not have been using the condoms correctly.
  
• Couples who reported using condoms consistently may have had trouble remembering their condom use or did not feel comfortable telling the complete truth. It may be that they did not use a condom for every sex act.
  
• Couples who used condoms may have engaged in behaviors that put them at higher risk of HIV transmission compared to those who were not using condoms. For example, people who chose to use condoms consistently may have been having sex more often or having sex with a higher number of casual partners.
  

For these reasons, the effectiveness of condoms at reducing the risk of HIV transmission through oral, anal and vaginal sex is likely much higher than 80% when used consistently and correctly.

 

This article finds that if condoms are used consistently and correctly, the protection is much higher:

http://www.ncbi.nlm.nih.gov/pubmed/9141163

This article reports that self-report of condom use is not a reliable measure:

http://journals.lww.com/stdjournal/Abstract/1995/01000/Condom_Use_to_Prevent_Incident_STDs__The_Validity.3.aspx

 

Interestingly, I have been trying my darndest to find actual studies on-line to support either the 70% or 80% or 90% or 95% figures. If someone here is better at finding the actual studies than I am, I would love to see actual studies, but all I have been finding are studies which have followed prostitutes in Zaire and Uganda, which are obviously not terribly relevant to myself or my typical patient population.

I'm not arguing that Truvada doesn't probably deserve a bigger role than it's been getting. However, I would like to look at actual studies when people quote figures.

[Floyd_Taylor]

Unicorn -- Here's a link to the CDC study authored by Dawn Smith. It was in the Journal of Acquired Immune Deficiency Syndrome.

 

http://www.ncbi.nlm.nih.gov/m/pubmed/25469526/

 

The earlier article you mentioned was from 1997. This is from 2015 and Dawn Smith is the expert at CDC. She first presented her initial findings at CROI in 2013 and this is an abstract and link to the full report.

 

The other article is was published in the Oxford Journal. It is probably better to call it a meta-analysis than a study. Here's link to the article from Towleroad about the same article which is slightly better written (the Metro Weekly writer didn't do a great job). I've seen this mentioned in half a dozen other gay publications in the last 24 hours.

 

http://www.towleroad.com/2016/01/298064/

[Floyd_Taylor]

But what struck me in the Canadian website was the list of Disadvantages to Condoms:

 

Condoms have several disadvantages and this can make it difficult for people to use them consistently and correctly. For example:

 

• There are many ways in which condoms can be used incorrectly.
  
• Condom use can be difficult to negotiate with a partner.
  
• Condoms need to be available at the time of sex and may be difficult to use if sex is unplanned or recreational drugs are involved.
  
• Condoms can make it difficult for some people to maintain an erection, also known as condom-associated erection problems.
  
• Condoms can be uncomfortable and decrease sexual pleasure and intimacy. Poor “fit and feel” of condoms may be a major cause of breakage, slippage, leakage, issues associated with pleasure loss during sex, and condom-associated erection problems.
  
• People who have allergies to latex cannot use latex condoms. However, non-latex options are available.
  

Many ways in which a condom can be used incorrectly, and poor fit and feel which may cause breakage, slippage, and leakage sure seems like those two alone would lead to less than 80% effectiveness when used consistently. Consistently is not correctly. And as we learned in a different thread, some of the non-latex options (such as sheepskin condoms) do not protect against HIV at all (who knew?).

[ny2222]

Two of the better scientific reviews on the subject. References are listed at end of articles.

http://www.aidsmap.com/CDC-researchers-publish-estimate-of-effectiveness-of-condom-use-in-anal-sex/page/2930716/

http://www.aidsmap.com/Do-condoms-work/page/1746203/

 

s

[Guest]

Yes, I think that the scientific reviews referred to in ny2222's post point to the difference between typical condom use versus correct, consistent condom use. If condoms only worked 70 or 80% of the time when used correctly, they wouldn't be of much use. Dawn Smith's article depends on retrospective recollections. When used correctly and consistently, condoms are quite effective. The problem is that condoms often aren't used consistently or effectively.

[Floyd_Taylor]

Yes, I think that the scientific reviews referred to in ny2222's post point to the difference between typical condom use versus correct, consistent condom use. If condoms only worked 70 or 80% of the time when used correctly, they wouldn't be of much use. Dawn Smith's article depends on retrospective recollections. When used correctly and consistently, condoms are quite effective. The problem is that condoms often aren't used consistently or effectively.

 

Dawn Smith's article shows that inconsistent use doesn't go into that 70-80% effectiveness number. That is only with the effectiveness number. And if the condoms are so problematic that they cannot be used correctly and effectively at a much higher rate than that, isn't that a huge problem? The same problems which are listed in the Canadian list? By saying they are 70-80% effective when they are used, that encompasses the times they are not used correctly and effectively rendering them suboptimal at best.

[+ deej]

Fucking fascinating!

 

Indeed. And you say it in such an inviting way.

[Rudynate]

Yes, I think that the scientific reviews referred to in ny2222's post point to the difference between typical condom use versus correct, consistent condom use. If condoms only worked 70 or 80% of the time when used correctly, they wouldn't be of much use. Dawn Smith's article depends on retrospective recollections. When used correctly and consistently, condoms are quite effective. The problem is that condoms often aren't used consistently or effectively.

 

You would have a hard time convincing men who have been sexually active throughout the epidemic and who adopted condom use early on that condoms are only 70-80% effective. There's an enormous population of such men who are HIV-free today who would credit condom use for their status, rightly or wrongly.