“My risk–reward calculations changed dramatically as my survival chances declined,” says Jonathan Friedlaender, a 20-year survivor of melanoma.
Everyone in health care seems to be talking about value these days—getting the biggest health care bang for our health care bucks.
Jonathan Friedlaender’s story may provide some insights into what cancer patients really value when the chips are down.
The 76-year-old retired professor of biological anthropology at Temple University in Philadelphia was diagnosed with stage 1 melanoma in 1996. That’s odd, he thought, there’s a bluish grey bump above my knee. Surgery confirmed the worst-case scenario, the M-word: malignant.
Since then, Friedlaender has endured the two decades of ups and downs of cancer treatment. Today, against the odds (and a reminder that they are odds, not foregone conclusions), he is alive and has emerged from active treatment.
When Friedlaender was diagnosed, there were no proven melanoma drugs. After the initial surgery and a follow-up biopsy of a sentinel lymph node in his upper thigh, he was told there was just a 20% chance of recurrence.
Friedlaender dutifully subjected himself to periodic chest X-rays. “They told me nothing was there, and I was more likely to die in a car accident than from melanoma.”
In 2003, he found a lump in the same lymph node bed that had been previously biopsied. His five-year survival chances tanked from 80% down to 20%. His priorities changed. He remarried, retired, and moved to a pretty spot in Litchfield County, Conn.
His cancer had other ideas. Additional tumors appeared. By the end of the first decade as a melanoma patient, he had four surgeries and participated in two clinical trials without a positive response.
After moving, he switched his care to an oncologist at Yale, Mario Sznol, MD, who thoroughly reviewed his records. More bad news: His disease had spread to his lungs. Sznol said he considered Friedlaender to be in stage IV of the disease, median expected survival, eight months.
Rather than being turned off by Sznol, Friedlaender says he appreciated the doctor’s direct but upbeat style. “He was very aggressive and optimistic. He told me, ‘Treating cancer is like soccer, I believe in taking shots on goal even if they are low percentages because some will pay off.’”
But things began to go downhill in 2011.The disease metastasized, and he was suffering blood loss. Friedlaender was treated with one of the new immunotherapy agents, ipilimumab (Yervoy), and it held his disease in check for about a year and half, but then the relentlessness resumed.
Three times he was rejected for trials of the anti-PD-1 immunotherapy drugs but finally was able to get Merck’s anti-PD-1 drug, pembrolizumab (Keytruda), in its expanded access phase.
Still, the cancer had metastasized so many places and it seemed time to face the hard truth.
“I reconciled myself to the possibility of death and I started end-of-life discussions with my family,” says Friedlaender. But he trusted Sznol. Tumors were blocking Friedlaender’s small intestine, but there was a real chance, Sznol advised, that this new therapy could eliminate the remaining disease after the surgery to relieve the blockages. So he went ahead with the surgery.
Now Friedlaender is in reasonably good health, a dramatic reversal from those dark days of 2014. Reflecting the optimism that helped carry him for 20 years, Friedlaender has elected to go off all immunotherapy medications, even though evidence supporting this choice is uncertain.
All those calculations, the tradeoffs, value math—it changes in life-threatening situations, says Friedlaender. “My risk–reward calculations changed dramatically as my survival chances declined,” he says. “I was ready to risk much more.”
Experts say increased “patient centeredness” is one of the most important elements to include in the transition to a value-based health care system. Friedlaender’s experience points to the primacy of the doctor–patient relationship. “The thing I valued the most was finding an oncologist who was extremely knowledgeable and communicative,” says Friedlaender. The interaction he had with Sznol fit perfectly with his desire and commitment to be so actively involved in his treatment. It doesn’t get talked about much, but putting American health care on a value-based footing, which often involves shifting financial risk to providers, could tarnish the doctor–patient relationship by insinuating cost considerations into treatment decisions.
If it were plugged into one of the value algorithms that ASCO and other organizations have put together, who knows how Friedlaender’s experience would come out. The cost of all of the treatments he has received easily exceeds $1 million. Friedlaender knows he’s been fortunate in this respect: His out-of-pocket costs have been a tiny fraction of that amount. “I have great coverage through Temple, plus Medicare,” he says. “I pay essentially nothing, not even monthly payments, because I prepaid for a plan with extra coverage before I retired.” He adds, “They don’t offer that package any more—and I may be responsible!”
Friedlaender wrote an essay for Health Affairs about his treatment experience that was published earlier this year and then excerpted in the Washington Post. He mentioned that his drug costs amounted to about $150,000 per year while the charges for a friend receiving the same treatment were four times higher. Drug companies charge whatever they think the market will bear, he wrote in the Post. “I strongly believe in introducing more competition to drug pricing and changing the way things are currently done,” says Friedlaender.