Aug. 4, 2016
I began last year’s annual address by letting you know how encouraged I was that the National Institutes of Health had not only added PFS to its Genetic and Rare Diseases Information Center but linked to our website.
Now I’m equally encouraged to note a similar milestone, achieved exactly one year later, halfway around the globe.
PATIENT SUPPORT: Due to an increasing number of inquires from PFS patients around the globe seeking medical advice, we added a Patient Support section to our Resources page. Listed there are doctors who are aware of PFS and, in some cases, see patients who are believed to have the condition. While none of them professes to know the root cause(s) of PFS, nor claims to have a cure for the condition, they maintain an interest in helping PFS patients manage symptoms as best as possible until clinical research, hopefully, leads to the development of effective therapies.
To date, 20 doctors across nine specialties – from urologist Seth D. Cohen (right) at New York University’s Langone Medical Center to psychiatrist Luis Guilherme Streb in Porto Allegre, Brazil, to cosmetic surgeon Ilhan Serdaroglu in Istanbul, Turkey – have volunteered to assist in this effort.
MEDIA AWARENESS: Earlier this year, two documentaries on PFS debuted in Europe, one the Spanish public network TV3 (right), and another on the Belgian public network VRT, marking the first time the condition has been the subject of extended TV coverage.
We’ve also seen additional print-media coverage of the issue, both domestically and abroad. In September, the Australian-based International Business Times ran a story titled Post-Finaseride Syndrome Foundation funds 3 clinical studies on permanent side effects of prostate cancer, alopecia drug. Two months later, Men’s Journal, a leading US consumer publication, published a special report titled New Risks in Hair-Loss Drugs: The side effects of the most common male-pattern baldness pill—depression, insomnia erectile dysfunction—may be worse than we thought. And potentially permanent.
SUPPORTING RESEARCH: Peripheral to the studies we’ve sponsored, there has been a steady stream of research supporting the thesis that finasteride does in fact cause PFS. Abdulmaged M. Traish, PhD, professor of biochemistry and urology at Boston University School of Medicine, published a paper in the December issue of Current Sexual Health Reports titled The Impact of the 5α-Reductase Inhibitors (5α-RIs) on Male Sexual Function and Psychological Well-Being. In it he writes, “5α-Reductase inhibitors such as finasteride…have serious and, in some patients, persistent or irreversible sexual side effects. These agents interfere with the biosynthesis and metabolism of neurosteroids and may adversely affect mood, stress, and anxiety and potentiate the onset of depression.”
A month later, Carlo Trombetta, MD (right) at the University of Trieste’s Urological Hospital published a paper in Andrology titled An observational retrospective evaluation of 79 young men with long-term adverse effects after use of finasteride against androgenetic alopecia, in which he notes, “Concern regarding adverse effects of finasteride is increasing… The most frequent sexual symptoms referred were loss of penis sensitivity (87.3%), decreased ejaculatory force (82.3%), and low penile temperature (78.5%)…Further studies are necessary to investigate the pathophysiological and biochemical pathways leading to the post-finasteride syndrome.”
(For a full directory of PFS-related studies, please visit our Published Research page.)
As we begin year five of our mission to fund research on and increase awareness of PFS, while helping support those afflicted by the condition, I ask you to continue giving generously to the foundation so that we may continue this vital work. And help prevent any more needless deaths in the coming year.
John Santmann, MD