The cost of keeping your hair | Before and After Episode 1 | Background Briefing

Key Concepts

• Finasteride: A medication primarily used to treat male pattern baldness and benign prostatic hyperplasia.
• DHT (Dihydrotestosterone): A potent androgen hormone derived from testosterone, implicated in male pattern baldness.
• Post-Finasteride Syndrome (PFS): A controversial condition characterized by persistent physical, neurological, and sexual side effects after discontinuing finasteride.
• Telerealth: Healthcare services delivered remotely using telecommunications technology.
• Epigenetics: The study of heritable changes in gene expression that do not involve changes to the underlying DNA sequence.
• Therapeutic Goods Administration (TGA): Australia's regulatory authority for therapeutic goods, including medicines.

The Internet's Influence on Body Image and Pharmaceutical Solutions

This episode of "Background Briefing" explores the phenomenon of individuals turning to the internet for perceived bodily flaws and the subsequent marketing of solutions, focusing on the drug finasteride and its potential side effects. The narrative begins with an experiment by reporter Ty King, who, after searching for "hair loss treatment" online, encounters the telehealth company Pilot.

Pilot and the Finasteride Experiment

Ty King's personal experience highlights the ease with which individuals can access finasteride through online platforms.

• Process: King Googled "hair loss treatment," clicked on a top result leading to Pilot's website, completed a quiz, uploaded photos of his hair, and had a brief consultation with a doctor.
• Medication: He was prescribed a combination of finasteride and minoxidil.
• Advertised Side Effects: The doctor mentioned low libido, breast swelling, mood changes, and erectile dysfunction, noting these could persist after stopping the drug and were "very, very rare." Topical finasteride was presented as safer, but oral was chosen for convenience.
• Delivery: The medication arrived five days later in a nondescript, blank cardboard box, with instructions to scan a QR code for more information.
• Unmentioned Side Effects: The QR code's information focused on sexual side effects but omitted more serious potential harms like anxiety, depression, and suicidal ideation, which King had heard about.

The Case of Andre Eid: A Personal Account of Persistent Side Effects

The report then delves into the experiences of individuals who claim to have suffered severe and persistent side effects from finasteride, such as Andre Eid.

• Initial Motivation: At 25, Eid noticed hair thinning and sought treatment from Ashley and Martin, a company that advertised hair loss solutions.
• Early Symptoms: Within three weeks of using topical finasteride, Eid experienced enlarged nipples (gynecomastia) and a muted, pleasureless orgasm.
• Escalation of Symptoms: Despite stopping the topical finasteride, his sexual symptoms worsened, and he developed new issues, including panic attacks and a fear of public speaking, contrasting with his previously extroverted personality.
• Diagnostic Challenges: Eid faced difficulties in getting a diagnosis, with doctors dismissing his concerns or being unaware of finasteride's potential side effects. He was told a blood test for DHT was not possible, and some doctors suggested his symptoms were psychosomatic ("in your head").
• Discovery of PFS: Through online forums, Eid learned about "Post-Finasteride Syndrome" (PFS), a condition reported by thousands of men experiencing similar persistent symptoms.
• Medical Response: An endocrinologist acknowledged PFS as a possibility but advised patience. He was prescribed erectile dysfunction medication, which did not address his psychological symptoms.

Understanding Finasteride and the Emergence of PFS

The report explains the mechanism of finasteride and the historical context of its side effect reporting.

• Mechanism: Finasteride blocks the enzyme that converts testosterone to DHT, the hormone responsible for male pattern baldness.
• Merck's Propecia: Developed by Merck in the 1990s, Propecia's initial safety trials identified sexual side effects, which were included on the packaging.
• Delayed Recognition of Psychiatric Effects: Depression and other psychiatric side effects were not identified as risks in early clinical trials. Patients reporting such symptoms were historically dismissed.
• Post-Patent Generic Versions: After Propecia went off-patent in 2013, numerous generic versions became available, increasing accessibility and potentially contributing to a rise in reported concerns about persistent psychiatric side effects.

The Role of Advocacy and Research in PFS

The narrative highlights the efforts of patient advocacy groups in driving research into PFS.

• Mitch Sabine and the PFS Network: Mitch Sabine, not a medical professional, established online forums like "Propecia Help" and later the "PFS Network" charity to raise awareness and fund research due to a lack of action from pharmaceutical companies and regulators.
• Reported Symptoms: Forum members report a wide range of symptoms including muscle wastage, penile shrinkage, cognitive issues (insomnia, brain fog), anhedonia (inability to feel pleasure), severe anxiety, depression, and suicidal ideation.
• Crowdfunded Research: The PFS Network is funding two studies: one investigating epigenetic changes as a cause for persistent side effects, and another exploring genetic predispositions.
• Criticism and Justification: While advocacy groups funding research face criticism for potential bias, they argue they are filling a void left by others.

Regulatory Scrutiny and Growing Concerns

Recent actions by regulatory bodies indicate a growing acknowledgment of finasteride's risks.

• FDA Alert: The US Food and Drug Administration (FDA) issued an alert regarding persistent sexual dysfunction and depression linked to topical finasteride.
• European Regulator: The European regulator confirmed suicidal thoughts as a side effect of finasteride tablets.
• Psychiatry Journal Review: A 2023 review in the Journal of Psychiatry concluded that finasteride can cause depression and suicidality even after discontinuation, noting a two-decade delay in recognition.
• French Regulator's Stance: The French health regulator declared the benefit-risk ratio of finasteride for hair loss to be "unfavorable," deeming the dangers to outweigh the benefits for a cosmetic drug.

The Tragic Case of Mark Turner

The report shares the harrowing story of Mark Turner, a Canadian man who documented his experience with PFS in an essay published on Medium.

• Progression of Symptoms: Turner experienced brain fog, slowed thought processes, and exhaustion within weeks of starting finasteride. His condition deteriorated over 18 months, with severe insomnia and a feeling of continuous decline.
• Suicide: Turner died by suicide in 2022, approximately 18 months after starting finasteride. His essay, described as a suicide note, blamed the drug for his suffering and expressed a desire to help others.
• Mother's Perspective: Mark's mother, Denise, believes more information about finasteride's potential permanent side effects could have saved his life. She advocates for increased research funding.

Inconsistent Warnings and Regulatory Investigation in Australia

The report highlights inconsistencies in finasteride warnings in Australia and a subsequent TGA investigation.

• Manufacturer Discrepancies: Product information for Propecia (Merck) includes warnings about depression and suicidal ideation, while the Viatris brand (sold by Pilot) does not, due to different manufacturers.
• Pilot's Defense: Pilot claims to warn about serious mental health side effects but only if a patient indicates a history of mental health issues.
• TGA Investigation: The Therapeutic Goods Administration (TGA) acknowledged the inconsistency and is examining non-compliance issues related to generic finasteride.
• Reported Suicides: The TGA has received three unconfirmed reports of suicide in Australia linked to finasteride, underscoring the urgency of the investigation.

Angus's Near Miss and Concerns about Telerealth

The story of "Angus" (a pseudonym) illustrates the rapid onset of severe side effects and concerns about the accessibility of finasteride through telerealth.

• Rapid Onset of Symptoms: Within five days of starting finasteride, Angus experienced agitation, irritability, loss of erections, and a general feeling of being unwell.
• Deterioration and Suicidal Ideation: Over the following months, Angus experienced numerous physical and neurological symptoms, including anhedonia, brain fog, and severe depression, leading to suicidal ideation.
• Impact on Life: Three years later, Angus still struggles with depression and has found it difficult to maintain his career as a chef. He describes a significant loss of energy and drive.
• Concerns about Telerealth: Angus expresses particular worry about the ease of obtaining finasteride through telerealth platforms, facilitated by targeted social media advertising, believing it bypasses crucial warnings.

The Business of Telerealth and Finasteride's Role

The report examines the business model of telerealth companies and the significance of finasteride within them.

• Eucalyptus Health: Pilot is owned by Eucalyptus Health, a large Australian telerealth company operating in various sectors (Pilot for men, Juniper for women, Kin for fertility, Software for skincare).
• Unicorn Status Ambition: Eucalyptus Health aims for "unicorn status," signifying a billion-dollar valuation.
• Finasteride's Market Share: While Pilot sells various medications, it reportedly serves around 50,000 hair loss patients in Australia, indicating a substantial market for finasteride.
• Advocates' Demands: Australian men like Andre and Angus, along with advocates, call for proper warnings and for companies to fund independent research into finasteride's side effects. They suggest the TGA should mandate this if companies do not comply.

Lingering Effects and Future Outlook

The episode concludes with a reflection on the ongoing struggles of individuals affected by finasteride and the uncertain future of research and regulation.

• Andre's Continued Struggle: Three years on, Andre still experiences anxiety attacks, impacting his social life and personal events. He hopes for a scientific breakthrough.
• Angus's Cynicism: Angus remains less optimistic, believing a cure is unlikely in the near future and that his life may never fully recover. He struggles with daily tasks and maintaining his physical job.
• Call for Help: The episode ends with a reminder to call Lifeline on 13114 if the story has raised concerns.
• Preview of Next Episode: The next episode will focus on the trend of people opting for major surgery due to internet-driven body image concerns.