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Advocacy group spin may skew discussion on finasteride side effects

The following is a guest post by Dr. Richard Hoffman, a long-time story reviewer who’s been helping us knock down inflated claims from drug and device companies for years. This time, he’s raising questions about the harms attributed to a drug and whether the messages about those harms are evidence-based. There are many forces that seek to shape and sometimes distort the media discussion about health; all of them are fair game for our blog and systematic reviews.      


Blackboard with the chemical formula of FinasterideMany years ago I participated, for the first and only time, as a site investigator for a pharmaceutical study. The study was designed to evaluate the efficacy and tolerability of finasteride, marketed as Proscar, for treating men with symptomatic benign prostatic hyperplasia (BPH) in primary care settings (original studies showing clinical benefit were conducted in urology practices and enrolled only men with markedly enlarged prostate glands). Merck wanted to show that finasteride could be added to the “therapeutic armamentarium” of primary care physicians, thus expanding the use of their drug. Finasteride did reduce urinary symptom scores compared to placebo, though the statistically significant findings were of limited clinical importance. The discrepancy with the urology studies was likely because the primary care study enrolled men with relatively smaller prostate glands. Strikingly, drug use was associated with a 14% risk of sexual side effects, including erectile dysfunction, decreased libido, and ejaculation disorders. These findings are not surprising given that finasteride acts to reduce prostate size by blocking testosterone (which is why, marketed as Propecia, it is also used to treat male-pattern baldness). I’ve prescribed finasteride for many years to treat lower urinary tract symptoms in men with an enlarged prostate and routinely inform patients about the potential side effects.

Until recently, however, I had never heard of the “Post-Finasteride Syndrome” (PFS). I received an e-mailed advisory — essentially a news release — from Dr. John Santmann, described as an emergency medicine-trained physician and health informaticist, who is the CEO of the Post-Finasteride Syndrome Foundation. (The document emailed to me was nearly identical to this “Global Public Health Advisory” on the PFS Foundation website.) Santmann alerted me that PFS is a condition that “often has a life-altering impact on victims and their families, such as job loss and the breakup of marriages and romantic relationships, while also being linked to suicides.” The advisory was timed to coincide with the apparent addition of PFS to the NIH’s Genetics and Rare Diseases Information Center (GARD) and because a meta-analysis just published in JAMA Dermatology (not the more prestigious JAMA, as erroneously reported by the advisory) noted the seemingly biased and poor quality of reporting on the sexual adverse harms of low-dose finasteride for androgenic alopecia (male-pattern baldness).

This alert raises some interesting issues. The sexual adverse harms of finasteride for BPH are well documented; I was not aware of any long-term harms following discontinuation of the drug.  The average age of men in the BPH treatment trials was about 65, so aging is also contributing to declining sexual function—thus confounding efforts to attribute harms to the medication. However, many of the men enrolled in the hair-loss trials were in their 20s or 30s. Hair loss is not exactly a life-threatening condition, and sexual dysfunction certainly adversely affects quality of life. Expecting more rigorous efforts to determine the incidence and severity of important side effects of pharmacotherapy is reasonable—a point raised by an editorialist of the meta-analysis.

Nonetheless, the advisory seems rather hyperbolic in admonishing physicians to be vigilantly looking out for “symptoms in adverse drug reaction reports, suicide post-mortems, suicide-prevention services, and other patient records” and to alert the general population of this newly recognized condition. These appeals strike me as uncomfortably reminiscent of late-night TV and billboard pitches for malpractice attorneys.

In highlighting the growing concerns about this condition, the Foundation cites ongoing studies at prominent institutions–implying that this has become a priority research issue. However, these studies were actually funded by the Foundation, in part to “help establish PFS as a bona fide condition.” An announcement describing one of these studies and providing patient recruitment details refers to those suffering from finasteride-related side effects as “victims.”

The NIH has also expressed concerned about the quality of media communications on this topic. The PFS Foundation advisory referenced above was headlined, “U.S. National Institutes of Health Recognizes Post-Finasteride Syndrome” — suggesting that the NIH had given its imprimatur to classify PFS as a rare disease. However, inquiries from HealthNewsReview.org suggest that the agency interprets things differently. Bobbi Gardner, a public affairs specialist at NIH, wrote that the purpose of the NIH Genetics and Rare Diseases Information Center is to distribute information about conditions or syndromes, “not to determine or proclaim something a rare disease.” She emphasized that the page has a primary name “Adverse events of 5-alpha-reductase inhibitors” and was added in response to an outside inquiry. “The statement by the Post Finasteride Foundation you referenced therefore is not accurate and was not determined by us,” she said.

Why is this important? While I applaud efforts to obtain better evidence about the possible side effects of finasteride and communicate that information to patients, the public discussion about this issue seems to be troublingly skewed toward worst-case scenarios and personal stories highlighting speculative harms of the drug. The JAMA Dermatology meta-analysis did not find any evidence for a life-altering impact of finasteride, just that studies consistently failed to provide sufficient data to adequately characterize the potential harms of the drug. And yet the media coverage of the topic, based on these individual stories, presents an extremely dire portrait.

WTVR-TV (CBS): How One Man Said Hair-Loss Drug Ruined His Life

KPBS: Men Say Hair Loss Drug Causes Sexual Problems And Depression

CNN Weekend Show: Man Says Propecia Made Him Impotent

Just as narratives driven by personal stories can lead to an exaggerated sense of the benefits of drugs and treatments — as we often point out in our story reviews — personal narratives about harm have the potential to distort the public discussion that we are consistently hoping to elevate. More accurate, evidence-based news releases can lead to more balanced and informative coverage of these types of issues.

Additional reporting for this post was contributed by Kevin Lomangino.

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Comments (24)

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Brian Anderson

August 12, 2015 at 9:10 pm

“The JAMA Dermatology meta-analysis did not find any evidence for a life-altering impact of finasteride,”

Because that wasn’t the aim of the study. You say the meta-analysis “failed to provide” as if it was part of the methodology. And you blame others for skewing discussion. What a silly strawman.

Charles

August 12, 2015 at 10:31 pm

This opinion piece is pretty silly. Of course a site investigator for a specific drug would get defensive when the validity of said study (and dozens of others) is called into question. I think your own prejudice manifests itself when you coyly admit “Hair loss is not exactly a life-threatening condition.” Let’s be completely honest here – hair loss is NOT a medical condition. There is mounting evidence that finasteride causes long-term side effects in a subset of men through post marketing surveillance reports, case series, and more recently even controlled studies examining the composition of CSF in post finasteride syndrome patients.
Moreover, it is weak to try to impugn the credibility of the recent meta-study by saying it is from JAMA Dermatology, “not the more prestigious JAMA”. JAMA Dermatology is published by JAMA Network, the same umbrella organization which creates the generalist JAMA publication. It is undeniable this meta-study was published by a respectable and influential source and should carry weight with any objective, uninvolved reader.
Lastly, I find it utterly shocking that you are willing to put aside the risks of suffering permanent sexual/cognitive dysfunction for the prospects of slowing hair loss. I could understand this attitude if finasteride treated an ACTUAL medical condition but it is cavalier to disregard the very real risk potential for a drug that is usely purely for cosmetic purposes.

    Kevin Lomangino

    August 12, 2015 at 11:24 pm

    Charles,

    Thanks for the comment. I don’t see any “impugning” of the quality of the JAMA Dermatology meta-analysis in this post. Merely that it was inaccurately described in the PFS Foundation release as being published in the prestigious Journal of the American Medical Association — which it was not. I also see nothing to suggest that that Dr. Hoffman is willing to “put aside the risks of suffering permanent sexual/cognitive dysfunction for the prospects of slowing hair loss.” He doesn’t make any comment on that issue. The thrust of the post deals with the tone and accuracy of the statements made in the release, and the potential for those statements to influence subsequent media coverage.

    Kevin Lomangino
    Managing Editor

      Charles

      August 13, 2015 at 7:47 am

      Thanks for your response Kevin. The original press release does not lionize JAMA as being prestigious, it merely states the meta-analysis was published by JAMA which is an accurate statement. JAMA is responsible for the approval, editing, and quality controls of all of the articles published within its network so it is really nit-picky to criticize the press release for what is not even an inaccuracy. In my opinion, it reveals the underlying prejudice of Dr. Hoffman.

      Moreover, if you want to suggest there has been any quality concerns about PR you would have to point to the NIH. The GARD website very explicitly refers to Post Finasteride Syndrome as occurring in a “rare subset of patients”. Meanwhile, the NIH has also contributed funding to studies investing the syndrome. If it does not want to classify post finasteride syndrome as a rare disease, I am really unsure why they created a page for it on the Genetic and Rare Diseases Information center. Post-finasteride-syndrome has been named since finasteride is the most commonly taken 5-ARI but really the same condition has been reported from taking other drugs in the same class.
      While Dr. Hoffman does seem to discard the underlying message of the PFS release, at least in my opinion, it is pushing back against the overwhelming body of opinions that naively reject or deny the mounting evidence that these side effects are real.
      The prevalence of such side effects is low and remains to be determined, but it is an outcome that is extremely alarming since the benefit of taking hair loss drugs is minimal. Would you think the public would stand for it, if they knew a certain brand of lipstick left 1% of female consumers with permanently charred lips? Absolutely not and this is no different.

      Kevin Lomangino

      August 13, 2015 at 8:10 am

      Charles,

      I see this differently. The release does not say published “by” JAMA — it says published “in” JAMA, which refers to the specific journal and is not accurate. Different editorial people and standards and not at all the same thing.

      Regarding why the NIH put up the page in GARD, I think Dr. Hoffman tried to clarify this in the post by contacting them directly. Their interpretation of the significance does seem to be different than that conveyed by the release — a point that, to me at least, seemed worth communicating.

      Thanks for commenting.

      Kevin

Chris

August 13, 2015 at 7:16 am

Dr. Richard Hoffman,
I thought it was important to clarify some points in your article.
You write that Dr. Santmann is “described as an emergency medicine-trained physician and health informaticist.” I’d like to point out that Dr. Santmann — as is clearly stated in his bio on our website — “earned his M.D. from Washington University School of Medicine in St. Louis and his B.A., in biophysics, from the Johns Hopkins University.” If you doubted that this was true, you could simply call those schools — or the hospitals he worked at — to confirm it. In addition, if you doubt that he runs a medical-software company, they only need to Google him — or even drive to his office — to see that he has been in that position for over a decade. Hence, Dr. Santmann is not “described” as those things. He IS those things.
You also note that Dr. Belknap’s study was published in “JAMA Dermatology (not the more prestigious JAMA).” First of all, the email advisory issued by the PFS Foundation links directly to the JAMA Dermatology page, so anyone going to that page can see the actual source. Secondly, JAMA Dermatology is the exact same publisher as as JAMA, so trying to imply there’s any difference in the public’s mind is like saying Diet Coke is a less impactful brand than regular Coke.

    Kevin Lomangino

    August 13, 2015 at 7:54 am

    Dear Chris,

    Thanks for your comment. Dr. With respect to the description of Dr. Santmann, I think you are taking issue with a perceived slight that was not intended and does not exist. Dr. Hoffman was conveying the fact that this description of Dr. Santmann came from the news release and that it provides additional specifics regarding his training (info that might not be evident just by describing him as “Dr. Santmann”) There is no suggestion that Dr. Santmann is not in fact an emergency-trained physician or health informaticist.

    Regarding your second point, I must beg to differ. There is a very significant difference between JAMA and JAMA Dermatology in the minds of people knowledgeable about medicine and, I would bet, many members of the general public. Who knows how many people will click through the link to see where the study was actually published? The description is misleading.

    Kevin Lomangino
    Managing Editor

      Chris

      August 13, 2015 at 2:54 pm

      Dear Kevin
      Thanks for your response. I have further objections to the article.
      “In highlighting the growing concerns about this condition, the Foundation cites ongoing studies at prominent institutions–implying that this has become a priority research issue. However, these studies were actually funded by the Foundation, in part to “’help establish PFS as a bona fide condition.’”
      With the words “actually funded” Dr. Hoffman is implying he has exposed some truth here — like the foundation had been hiding some evil deed. But — duh! — right on the advisory itself, it says:
      “Please note that there are currently no effective treatments for PFS. However, the PFS Foundation has to date funded three research initiatives seeking to identify the root causes of the condition.”
      So his “investigative reporting” is to tell the world what the foundation itself said?
      Moreover, he makes no mention of ALL the other, non-foundation-funded research clearly housed on the foundation’s website. If he were look over all that research, would he come to the conclusion that 10 or so highly reputable researchers who have published studies in highly reputable journals are all liars? That there’s zero truth to the fact that finasteride causes persistent damage?
      This isn’t just about the semantics but the slant of the entire article being to discredit a non-profit Foundation dedicated to researching this syndrome.
      Tell me, what does Dr. Hoffman suggest we ought to be doing? Should we NOT talk about it? Should we not try and warn the public about it?
      *shrug*
      Chris

James

August 13, 2015 at 11:31 am

I don´t see the point of the article. Merck has been claiming for years that side effects from this drug are rare and 100% reversible, based on their own studies. So why can´t Post Finasteride Syndrome Foundation claim the opposite, based on the foundations own funded studies? In the end, people will have their own opinions about this medication based on their own experiences. And from the thousands of personal stories we find on the internet, it is not a pretty picture.

    Docforhire

    August 13, 2015 at 5:51 pm

    I find it interesting that on one hand the author states “Until recently, however, I had never heard of the “Post-Finasteride Syndrome” (PFS)” while later in the article he proclaims “and yet the media coverage of the topic, based on these individual stories, presents an extremely dire portrait”
    It seems the author is talking out of both sides of his mouth. If he, a doctor, is just NOW hearing about Post Finasteride Syndrome, then it would seem he either doesn’t stay updated on current medical issues, or the media coverage has been scarce. If it the former, then this article isn’t worth much. If its the latter, then the missive composed is extremely disingenuous. Interestingly the doctor says “More accurate, evidence-based news releases can lead to more balanced and informative coverage of these types of issues” without providing any evidence himself. Very strange. Since the doctor thinks it important to point out funding organizations, “However, these studies were actually funded by the Foundation” in fairness, and considering that Finasteride, even in its generic form, is the lynchpin of the multi billion dollar hair loss industry, who commissioned and paid for the doctor’s time in writing this piece?

      Kevin Lomangino

      August 13, 2015 at 7:59 pm

      Docforhire,

      I wanted to respond to your question about who commissioned and paid for this article. Dr. Hoffman donates his writing and expertise to our project and does not accept payment from us. All of our contributors sign an industry-independent disclosure agreement attesting to the fact that they have not received payments of more than $1000 from drug or device companies in the past year. Dr. Hoffman is passionate about getting accurate and unbiased information about medical issues to our readers. You can disagree with his opinions, but the suggestion that he’s being paid to give them is off-base.

      Kevin Lomangino
      Managing Editor

Docforhire

August 13, 2015 at 5:58 pm

I also just noticed that Dr. Hoffman tagged this story with “Disease Mongering”. Really? If the intent of the article was just to inform, that’s seems like an extremely aggressive, pejorative and belittling tag to put on this article. Don’t the thousands of men suffering from Post Finasteride Syndrome deserve a little more respect than that….or do you think they are all just “disease mongers?”

    Kevin Lomangino

    August 13, 2015 at 8:15 pm

    Docforhire,

    The post was not tagged by Dr. Hoffman — I used the “disease-mongering” tag to make sure it was filed with other posts that deal with potential exaggeration relating to medical issues. That’s certainly not meant to belittle the experience of any person or to suggest that anyone suffering from harms of finasteride is a disease-mongerer. However, as the NIH points out, the news release overstates the significance of the listing on the NIH GARD page and what that listing means. In addition, the suggestion that physicians everywhere should be combing suicide post-mortem reports for symptoms of finasteride-related side effects did seem excessive to me and consistent with the “disease-mongering” tag.

    Kevin Lomangino
    Managing Editor

      Charles

      August 13, 2015 at 10:18 pm

      The disease mongering label is inappropriate and dare I say ironic given you are defending a drug prescribed to “treat” hair loss. What you see is not mongering of any sort, but a subset of users who have developed permanently disabling side effects from taking a consumer product. Reports of the adverse events have been around for over a decade but have been conveniently swept under the rug ever since, hence why the term “victim” is appropriate for those suffering from this completely gratuitous disease. Propecia was approved in the late 90s and you probably don’t need reminding that was the period in which Merck also gained approval for Vioxx, their NSAID which led to the deaths of tens of thousands via means of heart attack.

      What you have done here is provide a forum for Dr. Hoffman to defend the research he did in collaboration with Merck on the drug. The message he broadcasts is surprisingly out of phase with this site’s objective to serve as a healthcare watchdog.
      I suggest scrapping this article entirely and commissioning a uninvolved author to investigate the issue from an objective perspective. It would be very beneficial to the public if Health News Review could present a balanced analysis of the evidence that has been collected over the years, a discussion of why these kinds of reports may take so long to emerge, and what more data would be reasonably required in order to come to a conclusion about the matter. Frankly, a piece of this nature has yet to be written.

      Kevin Lomangino

      August 14, 2015 at 7:56 am

      Charles,

      Thanks for the comment. I respectfully disagree. I don’t see anywhere in this post that Dr. Hoffman “defends” finasteride. I think he does a pretty good job of disclosing any possible conflict of interest he might have in discussing a study done many years ago. And he says it’s reasonable for consumers to expect better reporting of adverse events in such studies. His issue as I read it is with the tone and wording of the PFS Foundation news release, which is misleading and inaccurate. So in that respect the post is very much consistent with our role as health care media watchdog. It’s certainly possible that a post exploring other aspects of this issue and the related media impact could be written. But that’s not what was explored in this post. We and Dr. Hoffman have done many posts examining drug company disease-mongering and promotional spin. But we are an equal opportunity critic, and we don’t shy away from exploring any media messages on health care, no matter the source.

      Kevin

Docforhire

August 13, 2015 at 8:44 pm

Considering that Post Finasteride Syndrome is so poorly understood, is a data deficient condition, and with the knowledge that two of the twenty-five men participating in the Baylor research have committed suicide in the past year, it seems flippant at best and dangerous at worst to suggest doctors prescribing Finasteride be less vigilant in regards to drug.

Ewan

August 14, 2015 at 1:19 pm

I think it’s quite clear this article hasn’t been entirely fair. As has been mentioned in previous comments, you say Dr Santmann is “described” as a doctor in his own email, and yet if you really had any doubt about this you could have contacted his universities or done some research to verify it, but by leaving this in the author attaches some doubt as to his credentials, which I think was the intention. The author also then refers to “Santmann” without the title of “Dr” in very next line.

As has also been mentioned, JAMA Dermatology is the journal within the JAMA network which deals with dermatology. Claiming that it is “not the more prestigious JAMA” leads the reader to think that JAMA Dermatology is some kind of a fake copy, which is entirely untrue. It forms part of the JAMA Network, which can be found with a quick google search, and this network includes the general journals called “JAMA” and “JAMA Dermatology”. This has been pointed out, and the response of the editor was to say that those “knowledgeable about medicine” distinguish between the two, which I don’t think is a very good answer. However if this really is the case, and if you think that the Foundation has been misleading, then by all means point out the difference between the two, but it would only be fair to also clarify to readers that JAMA Dermatology is nevertheless a noted and legitimate journal, and is associated with it’s more prestigious sister journal JAMA.

The author later says that this JAMA Dermatology article “did not find any evidence for a life-altering impact of finasteride”, which gives the reader the impression that the article was attempting to conclude this, and that therefore finasteride is safe. For instance, if I write “The British Medical Association has not found any evidence that speeding causes accidents”, I might conclude that speeding is safe, whereas the truth is in fact that the association did not look for evidence of speeding accidents, and so obviously did not find them. The same is true of the JAMA Dermatology article; it was looking for evidence that safety tests were not adequate, and concluded that they were not. This is about as strong a conclusion that the article could have come to. The author is otherwise quite balanced on this point, however that initial phrase leads readers to think that the article had “finding evidence of life-altering impacts” within its scope, when it did not.

Next, the author associates emails from the Foundation to “late-night pitches” from malpractice attorneys. That may well be, but perhaps only because malpractice attorneys try very hard to sound like their diseases are genuine. How exactly should PFS Foundation sound in order to distinguish themselves? Likewise for the term “victims” for those who suffer from the syndrome. Well, I’m sorry but if the syndrome really does exist then “victims” is exactly the term we should use for them. The fact that drug companies hijack the term to better market their drugs doesn’t mean the use of the word in legitimate cases is wrong.

Lastly, you, the editor, mention in a comment that authors must attest to having not received more than $1000 in payments from drug companies. Now, without accusing this author of anything at all, I would just like to point out that I, personally, would happily write a small piece for $990. Why is the figure $1000 rather than 0?

I feel this author is obviously an intelligent and knowledgeable writer, and he has made a fair attempt at examining the issues surrounding this drug and the possibilities of after-effects, however on these few points I think he has poured scorn where it isn’t justified, and at those points the analysis could have used a more empirical and less suggestive tone.

    Kevin Lomangino

    August 14, 2015 at 6:25 pm

    Ewan,

    Thanks for your comment. Let me respond to your points in order.

    1. See my previous comment regarding Dr. Santmann’s credentials. Although you may think that there was an intention to cast doubt on him, which is certainly your prerogative, I disagree, and I certainly think a reasonable reader could look at it more generously than you and other commenters are doing.

    2. I disagree that pointing out the inaccuracy in the release leads one to believe that JAMA Dermatology is a “fake copy,” or that it’s our obligation to explain the difference between the two. I think the burden is with PFS Foundation to put out an accurate news release to begin with — that’s the thrust of the post. I don’t think they should claim that a study was published in JAMA if it was not.

    3. I see your point but think there’s an equally valid counterpoint. If we have a news release discussing the publication of an important new study that discusses the lack of good reporting on adverse effects, then that’s what the news release should say. On what basis is there a justification to exhort doctors everywhere to comb through suicide post mortems and alert the general public about the life-altering effects of finasteride? In my view, that’s going too far.

    4. Should recruiting documents for clinical studies describe potential participants as “victims”? Seems prejudicial to me. In my view, objective research that’s supposed to characterize the extent of possible adverse effects from a drug should not start with the premise that the participants are victims. It makes it sound like the study is just a means to arrive at a foregone conclusion.

    5. Regarding our conflict of interest policy, the threshold is meant to assure our reviewers’ independence while not unreasonably disqualifying someone from participating because of very limited interactions with industry. The independence of our contributors is quite apparent to me and, I believe, anyone who reads our site on a regular basis.

    Thanks for the thoughtful questions and reasonable tenor of your comments, which is appreciated.

    Kevin

      Charles

      August 15, 2015 at 10:00 am

      Ewan’s post is very much on point. The “tenor” of this original article is written in a way that impugns the credibility of the self-described Dr. Santmann, the less prestigious JAMA Dermatology publication, and the people who now suffer from life-long health issues due to taking a consumer drug (but are not victims).

      Ewan’s point about the meta-study is completely correct as well. There are also numerous studies on the foundation’s website that offer an additional body of scientific evidence that finasteride can cause permanent side effects. The public should absolutely be informed that they risk facing life-altering adverse events should they decide to take a purely cosmetic product.

      Kevin, I might be overlooking something but I don’t see a suggestion in Dr. Santmann’s email or the foundation’s press release that doctors should be “combing through suicide post-mortems”. Your counter-response appears hyperbolic to me. The point of the press release is that this condition is probably both under reported and under recognized in patients suffering from it.

      Lastly, you say that contributors should not have received more than $1,000 from drug companies in the past year to submit an article to Health News Review. This constraint very much overlooks the fact that Dr. Hoffman was directly involved in the pharmaceutical studies for the drug. Do you truly think Dr. Hoffman can be objective on this matter if he was directly involved in the approval process for finasteride? It sounds like he would not be allowed to contribute if he received $1,000 last year from Glaxo but I think his prior involvement with finasteride would skew his objectivity much more. By the way, I imagine he must have received much more than $1,000 for his work at the the time of his participation.

      Thanks for your responses, Kevin.

      Kevin Lomangino

      August 15, 2015 at 10:54 am

      Thanks Charles for your comments. I think we’ve now discussed in some detail the basis for our opinions about Dr. Hoffman’s (in my view, accurate) description of Dr. Santmann’s credentials, the (in my view, inaccurate) description of the JAMA Dermatology meta-analysis by the PFS Foundation, and the tone of the (in my view, hyperbolic) PFS Foundation appeal to doctors to review suicide post-mortems and other patient records for symptoms of adverse effects of finasteride. Regarding potential for conflict of interest, I think Dr. Hoffman and we have been as transparent as we can be about any possible relationship or interest that could bias the article. It’s impossible to eliminate bias, which can take many forms, and readers will have to make their own judgments regarding Dr. Hoffman’s objectivity on this matter given our very upfront disclosure statement and rigorous COI policies. We’re going to be more selective about approving comments on this thread, which is at risk of becoming repetitive, as stated in our comments policy. Thanks again for your interest.

      Kevin

      Ewan

      August 15, 2015 at 1:30 pm

      Kevin,

      Thanks for the speedy reply, if you don’t mind, and as I’m sure you were expecting, I will add a couple of comments to your rebuttals.

      1: Ok, fair enough, if he was really only being absolutely exact by saying that Dr Santmann ‘describes’ himself as a doctor, then alright, and that’s his choice. But the author should be aware that phrases such as “Mr Obama, described as the President of the USA, said yesterday…” sound very strange to anyone who is in a position to verify the state of modern US politics. In the same line, it might have been more natural to simply write “Dr Santmann is an emergency medicine-trained physician”. But then again maybe the original version doesn’t leave the same impression on everyone.

      2: I see, well what I intended by that were examples like the university of “Oxford” and the university of “Oxford Brookes”, which have nothing to do with one another. Or plenty of other instances where someone piggybacks on the fame of another by adding a word or location to the end, I can’t think of a list right now but I’m sure you can think of some. The Foundation should have, to be really exact, said that it was published “by” JAMA and not “in” JAMA, but I don’t know if this merited a little snub. Either way, it should be reassuring to the author to consider that most of those who didn’t click through the link to the article probably wouldn’t know how to distinguish between the two JAMAs anyway.

      3: The argument would be that PFS Foundation’s standpoint is quite clear on the matter, and it is fair for them to interpret scientific in light of this, in a way which is reasonable. Several articles, including some by Michael Irwig, Abdulmaged Traish and Ayad Ali, all established researchers as I’m sure you know, have found or are investigating links between finasteride and suicidal ideation. From a public relations perspective then I think it’s their prerogative to exhort whomever they like, and urge doctors to be aware of this; doctors can see the evidence for themselves. From a scientific point of view, they weren’t claiming that any study had definitively proven the link, this was their interpretation of the evidence. And not an entirely preposterous interpretation. Another study has shown unusually low concentrations of neurosteroids in cerebrospinal fluid after discontinuation of finasteride.

      4: You are right, objective research should not start with the premise that the participants are victims. But in recruiting documents this doesn’t matter, since the patient at whom the document is targeted is either a genuine victim or else believes him/herself to be one. In other cases, using the term in the public sphere is fair game, since it’s not pretending to be scientific -if the premise isn’t unreasonable. If in the end the research is found to be biased then it’s anyone’s duty to shoot it down. Having said this, and slightly off-topic, I don’t see how it could be much more biased than a drug company funding studies to prove its own drug is safe. In fact this condition in particular stands out because no one is set to gain anything financially were this illness proven to exist. Or lose anything in fact, since it’s now a generic.

      Ah yes, lastly on this, if calling participants “victims” in recruiting documents is prejudicing the research to a foregone conclusion, then surely categorising this article within “disease mongering” also prejudices the reader to a foregone conclusion?

      5: Alright, yes if you’re satisfied with it then that seems like a fair response. I have to say that I noted the author is otherwise very good at not drawing the readers onto a clear angle, and seems balanced. We’ll leave it to the regular readers of your site to be the judge.

      Thanks for your well thought-out reply, I’m sure the next won’t disappoint.

      Eoghain

Tom

August 14, 2015 at 2:54 pm

I am a 42 year old physician and have been in private practice for 10 years. I had no medical problems whatsoever until I developed post finasteride syndrome 3 months ago. I have had to stop my profession and can definitively state PFS is a devastating and life altering condition. If you review peer reviewed articles by the experts in the field such as Dr. Michael Irwig there is no question that PFS is a real condition. Its a condition that has only recently come to medical attention because finasteride was only approved for male pattern hair loss in the late 90s. Therefore the medical community’s knowledge of PFS is still in the infancy stages.

Docforhire

August 16, 2015 at 8:55 am

Kevin –
I appreciate your time in responding to these comments. Men have been suffering with PFS for as long as the late ’90s. For most of that time these men have struggled to even get their own doctor to believe them, let alone medical establishment. Its taken us (I too suffer from PFS) over 15 years to get to the point where our disease is recognized by the medical community. You can imagine, I am sure, how frustrating it must be for us to see articles like those penned by Dr. Hoffman questioning the validity and reason for our cause. We have struggled to find legitimacy, and articles like this hinder us in finding validation, and ultimately a cure.
Whatever his reasons for writing the article may be, when Dr. Hoffman “uncomfortably” compares the PFS foundation’s motives to that of “late-night TV and billboard pitches for malpractice attorneys.” he (un?)intentionally mitigates our cause by suggesting that our intentions are remunerative in origin. This type of “victim” blaming seems to be anything but unbiased, and I am surprised you are in support of such not so subtle character attacks. I’ve interviewed over thirty different PFS victims for a PFS awareness podcast, and less than half of those men are involved in a lawsuit. Your support of this type of broad and slanderous statement seems curious for a watchdog group.
I’m sure it’s frustrating for you dealing with all these “negative” comments, but when you publish an article maligning a cause that is trying to help men that are suffering, should you be surprised?

    Kevin Lomangino

    August 16, 2015 at 10:07 am

    Docforhire,

    The response to Dr. Hoffman’s article is not at all unexpected or surprising. People with a strong interest in an issue like this will always have more incentive to express their point of view. We’ve seen it time and again. And the responses usually include what I perceive to be some willful misinterpretation of what was said in the post. We do it anyway and let people have their say. The marketplace of ideas… We’ve always maintained that the discussion about health issues should be evidence-based and accurate. We don’t think that campaigns to build awareness about an issue, however well-intentioned, should get a free pass. I don’t think that’s slanderous at all or represents victim-blaming. You are welcome to disagree and we’ve given you the chance to do so. However, this now really has become repetitive, so I will not be approving additional comments or responding to comments that don’t bring anything new to the discussion. Thanks for your interest and understanding.

    Kevin