The morning chill of February 2023 brought more than just cold air. It brought an excruciating pain that roused me from sleep. This wasn’t the typical ache I’d endured for weeks, reminiscent of a stubborn cramp from too much exertion. Now, standing required leaning against the wall for support.
Several hours into my hospital visit, the doctor approached, asking me to step into a private room. There, he revealed something unsettling: scans showed lesions and bone destruction across my hips and sternum. The diagnosis was multiple myeloma—a type of cancer that devastates bones.
A subsequent examination showed ‘innumerable lesions’ from head to toe, uncovering two broken ribs and a spinal compression fracture.
Seeking solace and answers, I turned to Google. The internet presented a grim outlook, stating a lifespan of three to five years for newly diagnosed patients. However, that information was outdated. Recent advances, particularly those tied to a surprising drug with a troubling past, have extended patient lives significantly.
The Revival of a Troubled Drug
The drug my doctor suggested was a thalidomide derivative—Revlimid. Thalidomide’s story is infamous, having caused severe birth defects in the mid-20th century. Here was a drug once condemned, now given renewed purpose as a valuable cancer treatment.
Revlimid has become one of the most profitable drugs, generating sales exceeding $100 billion, benefiting tens of thousands, including me. Yet, it demands nearly $1,000 per pill, despite costing only 25 cents to produce. The steep cost often puts it out of reach for many, impacting insurance premiums and patient debts.
Beth and Ira Wolmer’s Battle
Beth and Ira Wolmer’s journey began on a tranquil beach in the Cayman Islands in 1995, enjoying a brief respite from their busy New York lives. But during this trip, Ira experienced sudden cheekbone pain, leading to a multiple myeloma diagnosis upon their return.
Faced with limited treatment options, they discovered Dr. Bart Barlogie in Arkansas. Known for his aggressive approach to the disease, Barlogie had devised experimental therapies, like tandem stem cell transplants. However, Ira’s cancer remained resistant, pushing Beth’s resolve to the forefront. Determined, Beth scoured medical literature, looking for a breakthrough.
Folkman’s Vision and D’Amato’s Discovery
The quest led Beth to Dr. Judah Folkman, a visionary researcher. Folkman focused on tumor vasculature, hypothesizing cancer could be halted by depriving tumors of blood supply. Robert D’Amato, a researcher under Folkman, identified thalidomide as a potential vascular inhibitor.
Despite thalidomide’s notorious legacy, D’Amato’s work suggested possibilities for cancer treatment. Encouraged by Folkman, Barlogie and his team began early trials of the drug. Although it didn’t work for Ira, another patient, Jimmy, showed remarkable improvement.
Celgene’s Strategic Moves
News of Jimmy’s improvement reached Celgene, a company struggling financially. Acquiring thalidomide’s patents initially seemed futile. However, Celgene’s fortunes shifted as thalidomide, marketed as Thalomid, found new life. Its success led to the development of Revlimid, with Celgene securing strong patent protections to stave off competition.
Challenges and Allegations
Celgene faced criticisms over its pricing strategies, suspected of blocking competitors through rigorous safety programs. Despite generic makers’ requests, Celgene rarely sold Revlimid for testing. As frustrations mounted, the FTC and FDA scrutinized their practices, with little resolution.
Celgene’s revenue reliance on Revlimid drove aggressive pricing. By collaborating with and compensating key figures in the multiple myeloma community, they garnered support while edging out critics.
Revlimid’s Continued Impact
Despite challenges, Revlimid’s role in treating multiple myeloma persists. While it extends lives, its side effects and cost burden patients. Even under new ownership by Bristol Myers Squibb, price increases continue, pushing more patients to seek alternatives like generics or international suppliers.
Now in remission, I’m acutely aware of the ongoing battle against multiple myeloma. Like many, I hope for advances that balance efficacy and cost, ensuring everyone can access life-extending treatments.
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