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New Post-Finasteride Syndrome Foundation offers hope for Propecia victims

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Posted On 08.29.12 by in Propecia Archives

Merck & Co. may remain mum on the myriad of persistent side effects precipitated by its popular hair-loss drug Propecia, but victims worldwide should sleep easier tonight knowing that medical pros have banded together in the pharma giant’s backyard to tackle this growing epidemic.

The Post-Finasteride Syndrome Foundation today announced the launch of its website,PFSFoundation.org, which will help raise funds for medical research into treatments for post-finasteride syndrome (PFS), while promoting awareness of the condition.

View slideshow: PFS Foundation launched

The foundation also announced the election of Dr. John Santmann as CEO, Dr. Rosemary McGeady as general counsel, and Matthew Weintraub, R.N., as vice president.

PFS is characterized by sexual, neurological, hormonal and psychological side effects that persist in men who have taken the prescription drug finasteride to treat hair loss (under the brand name Propecia and generics), or enlarged prostates (Proscar and generics).

Among the symptoms endured by thousands of PFS victims across the globe are erectile dysfunction, genital shrinkage, Peyronie’s disease, gynecomastia, loss of libido, severe depression and cognitive impairment.

“From the increasing number of PFS cases being reported to the FDA, it’s likely that we’re just seeing the tip of the iceberg in terms of how many men have been rendered impotent by finasteride, let alone beset by other severe side effects that don’t resolve themselves months and even years after quitting the drug,” said Dr. Santmann, an emergency department physician by training, who earned his M.D. from Washington University School of Medicine and his B.A. from The Johns Hopkins University.

“Now, with the foundation’s website serving as a focal point for the scientific community, we aim to facilitate research at universities and hospitals in the U.S. and abroad,” added Dr. Santmann. “Through these initiatives, we’re seeking to identify the root causes of PFS and, hopefully, develop effective treatments.”

Financial contributions to the foundation can be made via PFSFoundation.org, which also houses published research, research goals, and media reports about PFS.

To date, individual donors have promised hundreds of thousands of dollars in funding to the foundation, Dr. Santmann told The Examiner.

Established in July 2012, the PFS Foundation is based in Somerset, N.J., just 16 miles from Merck’s corporate headquarters in Whitehouse Station, N.J.

Merck has not responded to repeated requests by The Examiner for comment on finasteride’s role in causing persistent side effects in men who have quit the medication.

The announcement of the PFS Foundation follows two new studies by Dr. Michael Irwig of George Washington University on the controversial medication’s long-terms dangers. The first, published July 12 in The Journal of Sexual Medicine, showed that 96% of the 54 young, previously healthy Propecia patients examined by Dr. Irwig suffered sexual dysfunction for more than a year after quitting the drug.

The second study, published Aug. 7 in The Journal of Clinical Psychiatry, showed that nearly 44% of the 61 young, previously healthy Propecia patients reported suicidal thoughts, while 36% had symptoms of severe depression.

And on April 11, 2012, the FDA ordered Merck & Co. to revise the labeling on Propecia to reflect mounting evidence that it can cause persistent sexual dysfunction. Of the 421 Propecia-related sexual dysfunction cases reviewed by the FDA in its probe, 14 percent lasted longer than three months after patients quit the drug.

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