2014 PFS Foundation Annual Address

Aug. 4, 2014

Dear Friends:

I’m pleased to report that 2014 is shaping up to be a turning point on the road to widespread awareness of post-finasteride syndrome.

Couple that with the steady progress of our clinical studies and I become ever more hopeful that the coming year will bring not only worldwide acceptance of PFS as a valid medical condition, but additional research projects that lay the groundwork for effective therapies.

Now, to mark the PFS Foundation’s two-year anniversary, I’d like to share with you some milestones of the past 12 months:

Global Medical Awareness: In January, we issued a Health Advisory on the growing incidence of PFS to more than 100 public-health agencies in 83 nations. Officials at eight of those agencies shared the advisory with 365 additional staffers. Among them was the chief medical editor at the Finnish Medicines Agency, who dispatched it to 110 colleagues. Six months later, we announced a 26% rise in the number of nations accessing PFSFoundation.org, which the Indonesian minister of health forwarded to 120 colleagues, and the chief medical editor at the Italian Medicines Agency to 35. Additionally, we’ve initiated communication with more than 500 doctors and other health care professionals across the globe who have backgrounds in finasteride use and research, and now share an interest in helping prevent PFS.

Media Awareness: In tandem with medical awareness have come additional news reports on finasteride’s long-term side effects, and the impact of PFS on patients’ health and daily lives. In April, nationally syndicated columnists Joe and Terry Greadon wrote: “Finasteride is associated with sexual dysfunction. Unfortunately, this adverse consequence of the drug sometimes lasts long after the medicine has been discontinued.” And in June, This Morning, the UK’s most popular morning show, reported that Propecia not only left Paul Innes “depressed and suicidal but it shrank the size of his penis.” That report was subsequently picked up by news services in Korea, Malaysia, Vietnam, Hungary and Nigeria.

Clinical Studies: On Aug. 21, 2013 we announced the funding of a second major research initiative, this one conducted by Dr. Mohit Khera at Baylor College of Medicine in Houston. (Meanwhile, Dr. Khera is still accepting patients. Anyone interested in participating should contact Sharon Harrison at sharons@bcm.edu) Also in the works is our first research project, conducted by Dr. Shalender Bhasin at Boston’s Brigham and Women’s Hospital (a Harvard Medical School teaching affiliate). Both studies are progressing steadily.

Supporting Research: Peripheral to the clinical research funded by the foundation, a number of studies have recently been published supporting the thesis that finasteride does in fact cause PFS. In a Korean Journal of Urology paper, Dr. A.M. Traish of Boston University School of Medicine writes, “The argument that the benefits of the drug outweigh the risks is slowly eroding in the face of new emerging scientific evidence…The available data demonstrate that such drugs do pose serious adverse effects.” And in a study published in the American Journal of Men’s Health, Dr. Christine Ganzer of the City University of New York writes, “The most notable finding was that adverse effects persisted in each of the domains, indicating the possible presence of a ‘post-finasteride syndrome.’”

Development: Thanks to continued support from hundreds of donors around the globe—from Beverly Hills, Calif., to Karnataka, India—we’ve raised hundreds of thousands of dollars in new funding. In particular we’d like to thank the family and friends of Daniel Stewart for their contributions in his memory, and once again express our condolences for his loss.

As we continue this important work in the coming quarter and beyond, I ask each of you to continue giving generously to the foundation to help ensure that we’re able to find a cure, while continuing to create awareness that promises to prevent any more needless deaths, or decimation of otherwise happy, productive lives.



John Santmann, MD