The RxISK Prize of $100,000 USD is offered to anyone who can provide a cure for persistent sexual side effects after stopping antidepressants, finasteride (Propecia), or isotretinoin (Accutane).
Story
Most people are aware that antidepressants can cause sexual side effects but almost no-one knows these can endure permanently after treatment stops – sometimes only emerging after treatment stops. This is a problem facing tens of thousands of people with:
- Post-SSRI Sexual Dysfunction (PSSD)
- Post-Finasteride Syndrome (PFS)
- Post-Retinoid Sexual Dysfunction (PRSD)
Finasteride is used in younger men for the treatment of male-pattern baldness. Isotretinoin is a retinoid used in the treatment of acne.
These conditions lead to suicide, relationship and family break-up, job loss and lead to a lot of wasted money taking risks on dangerous options held out as cures. At present there is almost no support for those affected.
The problems affect both men and women and cause genital numbness, pleasureless or weak orgasm, impotence, loss of sex drive and other difficulties. They can start after only a few days exposure to these medications and in some cases persist for decades.
We want to change this.
On September 12, 2017, we launched our campaign to raise $100,000 for a Prize which will be offered to anyone who finds a cure for PSSD, PFS or PRSD. This could be a doctor, a scientist, a drug company, a member of the public – anyone.
Goals & achievements
Raised funds
The goal of $100,000 USD was achieved on 14 December 2020 through a combination of donations and pledges from 193 supporters in 24 countries.
Donations are held by Centre for Data Based Medicine, a registered charity in England and Wales.
Increased awareness
We used the campaign as an opportunity to raise awareness by contacting and informing various groups about the conditions. This included pharmaceutical companies, medical associations, sexual health groups, mental health groups, drug regulators and journalists.
RxISK was the first group to report on enduring sexual dysfunction after treatment with isotretinoin in the peer-reviewed medical literature. We were aware of common features between PSSD, PFS and PRSD from the beginning, and this was made clearer in our published papers:
- Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin
- Enduring sexual dysfunction after treatment with antidepressants, 5α-reductase inhibitors and isotretinoin: 300 cases
Network of healthcare professionals
We created a list of doctors and specialists who are familiar with PSSD.
Medication labels
We successfully petitioned regulators in North America and Europe resulting in changes to antidepressant labels. See our blog posts:
- EMA acknowledges persistent sexual dysfunction after SSRIs & SNRIs
- Health Canada warns about persistent sexual dysfunction after SSRIs & SNRIs
Petitions to FDA
We submitted petitions to the Food and Drug Administration (FDA) on 11 May 2018 and 29 October 2018, requesting changes to antidepressant and isotretinoin labels. These are still outstanding.
- Citizen petition: Sexual side effects of SSRIs and SNRIs
- Citizen petition: Sexual side effects of isotretinoin
They can also be viewed along with accompanying documents and comments on FDA’s website using this link for the antidepressant petition and this link for the isotretinoin petition.
Personal stories
Our blog contains several personal stories from those affected by enduring sexual dysfunction after stopping antidepressants, finasteride or isotretinoin.
Buried alive
“It’s a very scary thought that I probably won’t ever be me again, and I have moments of real fear when I think what I’ve lost.” Read more…
A PSSD story
“It is difficult to talk about this problem. When I have talked to people about it I have regretted it.” Read more…
I took antidepressants and I still feel medicated
“I have been medication free for almost 10 months. I continue to have numb genitals, low desire for sex and pleasureless orgasm.” Read more…
Post-finasteride syndrome (PFS)
“I still feel like ending my life and only keep going for the sake of my children, but I don’t know how long I can keep this going for.” Read more…
30 years of trading our sex lives for clear skin
“Sexual dysfunction has been my lot in life since taking Accutane over 14 years ago, and as noted, I am far from alone.” Read more…
His chemicals, my imbalance: A story about love
“I want to spend the rest of my life with him, but how does one have a successful marriage without a physical, intimate connection?” Read more…
Making a claim
You have to produce a positive outcome in a group of volunteers with PSSD/PFS/PRSD who are known to RxISK. Our volunteers are people whom we are confident have these conditions – there many people who think they have but don’t.
They know a lot about the condition and have researched it and possible treatments for years, so a first step is having a rationale good enough to persuade some sophisticated people who have already been damaged by drugs to take an additional risk.
Ideally anyone proposing a treatment will have some data in addition to a rationale. Data is often more persuasive than a rationale.
The treatment has to make a significant difference to most of the group. There are lots of individuals who have responses to different things that don’t work for any or many others.
RxISK must be allowed to tell the world about the treatment. It is important to give people who are enduring a horrific condition and at risk of suicide or harm from trying other dangerous remedies the earliest possible access to a treatment. We will not support someone attempting to profit from these conditions.
Campaign statistics
Video
You can watch our original video about the RxISK Prize.
Proposal to transfer the Prize
On March 13, 2024, it was announced that we are considering transferring the Prize to our PSSD Research Fund. More information on the background and our reasons for the proposal can be found in this blog post.