Despite his PFS affliction, humble library sciences whiz amassed world’s largest collection of information on finasteride dangers
Jan. 20, 2025
Dear Friends:
It is with profound grief that we report the passing of Kelsey Simon Libner. The longtime New York City resident took his own life December 16 at his home in Manhattan, at age 52.
Though many within the PFS community will be unable to place his name, they’re no doubt familiar with his Herculean effort to generate awareness of this devastating condition.
Kelsey was the sole creator and editor of Finasteride Watch, the world’s largest collection of research, news, history and other information on the potential dangers of finasteride, a 5α-reductase inhibitor (5ARI) prescribed for male pattern hair loss (1 mg), and enlarged prostate (5 mg).
From patient to partner
Like thousands of patients before and after him, Kelsey first approached the PFS Foundation via email.
“About 18 months ago, post-finasteride symptoms became very apparent and I’m quite sure it has seriously compromised my sexuality. I took Propecia for about seven years,” he wrote on Christmas Eve of 2015.
And like we do with every PFS patient, we promptly responded, enumerating the services we provide, directing him to report his symptoms to the FDA, and letting him know that, if need be, he could ring us up 24/7.
A week later—on New Year’s Eve—he did just that, eager to discuss his case in more detail, while intensely focused on the clinical and pre-clinical research we’d funded at Harvard Medical School, Baylor College of Medicine, and University of Milano.
Those discussions would become regular events over the next five years, with Kelsey showing an amazing capacity to locate, consume and analyze virtually every iota of finasteride info published anywhere. That, to the point where we eventually began learning things about the drug from him.
As did others. In 2020, Kelsey read a study in the World Journal of Urology titled An Evaluation of the Federal Adverse Events Reporting System Data on Adverse Effects of 5‐alpha Reductase Inhibitors. In it, Bilal Chughtai, MD, a urologist on fellowship at New York Presbyterian Hospital/Weill Cornell Medical College, erroneously stated that, in 2010, the FDA revised the finasteride warning label to include persistent sexual dysfunction.
“This is not checking out with other sources,” Kelsey wrote to Dr. Chughtai, along with a link to a paper in the American Academy of Family Physicians that confirmed the correct year of the regulatory action as 2012.
“Thank you for your note. I really appreciate it,” the researcher replied.
Kelsey was equally apt to take corporate entities to task. In 2018, he fired off this complaint to the FDA:
A new company in San Francisco called “Hims” is using slick marketing to sell hair-loss kits, including finasteride. Here’s the Hair Loss Rx kit that contains 1 mg finasteride pills. The company’s description of sexual side effects in What to expect when taking finasteride is incomplete. It does NOT mention persistent sexual side effects after stopping the medication, as laid out in the FDA-required safety information. I’ve had several of these symptoms since 2013. The condition is called post-finasteride syndrome.
By late 2020, as his PFS symptoms—which by then included anxiety, depression, and suicidal ideation—failed to subside, Kelsey resolved to act on two fronts.
Awareness-wise, he launched Finasteride Watch, which began as a bibliography of published studies and commentary encompassing all points of view vis-à-vis PFS. Within a year, however, he’d expanded the content to include categories ranging from Adverse event data to Weighing the risks. His Timeline section, which begins in 1942, proved particularly valuable to those approaching the PFS saga for the first time, members of the media foremost among them.
Notably, many of the site’s posts are accompanied by original commentary, all under the byline “Montaigne,” a not-so-thinly veiled reference to Michel de Montaigne, the 16-century French philosopher who pioneered essays as a literary form. Montaigne was of course Kelsey.
Medical science-wise, he made an equally important contribution. When we told him that Roberto Cosimo Melcangi, PhD, who heads up PFS research at the University of Milano, had sent us the protocol for a study seeking to demonstrate that the neurosteroid allopregnanolone (ALLO) might be effective in counteracting finasteride-induced alterations in gut microbiota, he grew enthusiastic. After all, positive findings could spell the beginning of the end of his worst PFS symptoms.
Then came the tough part—telling Kelsey we didn’t have sufficient funds for the study. Instead of sulking, however, he immediately mailed us a check to cover its costs: $15,000. Eighteen months later, the research was published in Biomolecules, showing that ALLO can in fact fix finasteride-damaged gut microbiota (at least in rats), thus marking the first known proof of recovery from a PFS symptom.
What’s more, it inspired Prof. Melcangi to restructure his PFS research in a way that progressed more quickly from animal-model explorations to testing potential therapies on humans. That effort would be formalized a year later in the Milano Project.
French connection
Always looking to lend a research hand, Kelsey teamed up with Aide aux Victimes du Finastéride (AVFIN) in 2021. The French PFS advocacy group had been founded five years earlier by Sylviane Millon-Mathieu, whose son, Romain Mathieu, took his own life in 2016 due to PFS.
AVFIN has consistently made progress on the regulatory front, first by prompting ANSM, its nation’s drug authority, to launch the world’s most vigilant PFS-prevention program. Soon thereafter, ANSM mandated that a “red-box” warning—which alerts consumers and health pros that a prescription drug carries significant risks of adverse reactions—be slapped on all finasteride 1 mg products. To this day, France remains the only nation on earth to have instituted such a warning.
AVFIN also played a key role in last year’s move by the European Medicines Agency to launch a finasteride-safety probe focused solely on suicidality.
A portion of that success, says Sylviane, is due to Kelsey, whose deep knowledge of PFS epidemiology coupled with French-language fluency made him an invaluable contributor to AVFIN each step of the way. As such, she was at no loss for words when memorializing him:
Your knowledge and skills could have given you an air of superiority, but that wasn’t the case. You took care to express yourself as clearly as possible so that you could be understood by as many people as possible. You were driven by the need to listen, to reflect, to share, to inform, to denounce, but you always exhibited modesty and sensitivity. All your years of loneliness, of enduring the horrific pathologies linked to 5ARIs, left you no choice but to free yourself the only way you knew how.
Idyllic beginnings
Kelsey entered the world on January 13, 1972, the youngest of three children, in Westport, CT. His father, Arnold, owned the Libner Grain Company, which sold wild bird seed, and later took up commercial real estate investing.
The Libner family lived directly across Coleytown Road from actors Paul Newman and Joanne Woodward. “They were the nicest, most humble people, and when I was a kid, I didn’t even get who they were,” Kelsey’s sister, Lisanne, told VoyageDenver last year. “I was best friends with their youngest daughter, Clea.”
Kelsey, too, made a Newman connection early on, one befitting his burgeoning social conscience. Shortly after the Butch Cassidy and the Sundance Kid star founded The Hole in the Wall Gang Camp in 1988, 16-year-old Kelsey signed up as a volunteer counselor. There, on 344 pristine acres in Ashford, CT, he helped children with serious illnesses spend joy-filled summers with family members—and raise a little recreational hell.
A Connecticut boy through and through, Kelsey remained in the Constitution State up through college. In 1990, he graduated from The Hotchkiss School in Lakeville, where, according to English teacher Geoff Marchant, he grew into an excellent writer who never backed down while defending his work. Four years later, he earned a BA in English from Yale University in New Haven.
Looking up
Kelsey went on to earn two post-graduate degrees: an MS in cognitive psychology from the University of Oregon, and an MS in information from the University of Michigan. It was in the latter discipline—aka library and information science (LIS)—that he first left his professional mark.
Kelsey’s early 21st-century research in this field helped lay the groundwork for the recent boom in artificial intelligence technology used to power apps like ChatGPT and Copilot. In 2002, he was among the team that published a study in the Journal of the American Society for Information Science and Technology titled Getting Answers to Natural Language Questions on the Web, which investigated the use of natural-language questions in eight popular search engines.
Over the next four years, that research was cited by at least as many fellow LIS gurus, in studies including Priming the Query Specification Process and Query Modulation for Web-Based Question Answering.
Kelsey also applied his digital-analytic skills to the corporate world, working for media conglomerate Hearst Communications, and for hedge fund Two Sigma Investments, both based in New York.
Takin’ it to the streets
During the final years of his life, Kelsey became interested in more visceral means of alerting consumers to the potential dangers of finasteride and other prescription medications. So when he met Jody Wood in 2022, it was an awareness match made in heaven.
“I had many conversations with him about ways in which art might interact with some of his research—leveraging the power of community experience while acknowledging that healthcare institutions often alienate us from our own bodies,” said the Brooklyn, NY-based artist.
After musing upon such interactions, Kesley would sometimes email Jody more fleshed-out suggestions, like this one from 2023:
I have an idea for a social art piece about side effects. It would be an information booth in a public place, where people can request information about side effects for common drugs. There would be a file box with leaflets for each drug. More subversive would be to rearrange the sheets and put the side effects at the top. A related idea would be to have a public reading of side effects.
As fate would have it, Jody was looking to add new remedies to her Social Pharmacy, a work in which community members share personal health regimens at a public installation, thus helping diminish reliance on pharmaceutical products.
The exhibit had opened a year earlier, at Sweden’s Skövde Art Museum. Now its New York debut was just around the corner. So Jody invited Kelsey to realize his vision in the form of a new “social prescription.”
And what might that be? A plan for alleviating depression by tapering off prescription drugs—including finasteride. In a fitting testament to his pharmacovigilance efforts, Jody has made Kelsey’s contribution a permanent fixture in the Social Pharmacy.
“Kelsey’s gentleness, humor, and brilliant mind will be greatly missed,” said childhood friend Ed LaLanne.
In lieu of otherwise paying respects to Kelsey, we ask that donations be made to the Milano Project
Finasteride was originally developed by Merck & Co., Inc., and first approved by the US Food and Drug Administration in 1993 as Proscar (5 mg, for enlarged prostate), and again in 1997, as Propecia (1 mg, for hair loss).
In June 2021, Merck spun off its Organon subsidiary as an independent public company (NYSE: OGN). Founded in the Netherlands in 1923, Organon bills itself as a “global health care company dedicated to making a world of difference for women, their families and the communities they care for.”
Among the Merck products Organon acquired in the deal were Proscar and Propecia. To report adverse events for either finasteride product, call the Organon Service Center at (844)674-3200, or email Service_Center@Organon.com.
Anyone living in the US who suffers from PFS should also report his or her symptoms to the US FDA. Anyone living outside the US who suffers from PFS should report his or her symptoms to the US FDA as well as to his or her local DRA, as directed on our Report Your Side Effects page.
If you or a loved one are suffering from PFS, and feeling depressed or unstable, please don’t hesitate to contact the PFS Foundation as soon as possible via our Patient Support hotline: social@pfsfoundation.org
Thank you.