In February 2023, I awoke to intense pain. My side felt as though I had been stabbed. For weeks, an ache had persisted, resembling a bad runner’s cramp. Now, it was unbearable. I had to brace myself against the wall just to stand. At the emergency room, doctors revealed lesions on my hip bones and sternum—signs of multiple myeloma, a bone-damaging blood cancer.
After the diagnosis, I sought fresh air and, like many patients, turned to Google. An outdated link suggested a newly diagnosed patient’s average lifespan was three to five years. However, recent information showed longer life expectancies due to a drug with a troubling history.
A hospital doctor informed me about taking a thalidomide drug. I doubted this, recalling thalidomide’s role in causing birth defects in the 1950s and 1960s. It was banned globally and led to the modern FDA’s formation. Yet, a derivative, Revlimid, emerged as a cancer fighter, credited with saving my life among others. However, its steep cost—nearly $1,000 per pill—hinders access for many, pushing some into debt or forcing them to stop treatment.
I’ve reported on U.S. health care costs for decades, highlighting the burden on patients. Despite my awareness, Revlimid’s pricing surprised me. Each capsule’s cost mirrored that of a new iPhone. Throughout, the price rose 26 times since launch, demanding a deep dive into Celgene’s pricing tactics.
My investigation revealed how Celgene manipulated drug pricing, beginning with Dr. Bart Barlogie’s unconventional approaches at the University of Arkansas for Medical Sciences. Patients like Ira Wolmer, treated by Barlogie, inspired hope amid grim diagnoses. Barlogie’s methods involved intense chemotherapy and stem cell transplants. However, when Ira relapsed, his wife Beth Wolmer searched for alternative treatments.
“I’ve never been more scared of a spouse of a patient than I was of her.”
Dr. David Siegel
Beth’s tenacity led her to Dr. Judah Folkman, whose research hinted at using thalidomide to inhibit tumor blood supply. Initial tests with thalidomide were unsuccessful. However, a researcher discovered its potential after further experimentation. Though Ira passed away, another patient named Jimmy showed remarkable recovery, propelling Revlimid’s fame.
Celgene, facing financial struggles, acquired thalidomide rights and encountered unexpected success. Despite patents in old thalidomide proving weak, Celgene engineered thalidomide analogs, safeguarding the company from competition. Revlimid’s eventual launch came with hefty pricing, exploiting the cancer market.
To battle competitors, Celgene leveraged the drug’s safety program to stall generic manufacturers, eventually capturing a monopoly. The hefty costs and Celgene’s tactics raised insurer premiums and patient financial strain. Even internal dissent over price hikes surfaced. Lawsuits and settlements concerning generic competition safeguarded the company’s profits until 2026.
Revlimid’s profitable run and Celgene’s internal struggles culminated in its acquisition by Bristol Myers Squibb for $74 billion. Mark Alles, the President at the time, drew criticism for raising prices without added benefits. Despite congressional scrutiny, Revlimid prices persisted, impacting patients severely.
The pain and burden of cancer treatment echo through many accounts. My journey reflects the broader issues of pharmaceutical pricing and patient care. While treatments advance, the reality of lifelong costs persists for many.