Envita, I learned, is not unique. I also found dozens of similar businesses around the country that provide cancer patients with costly, unproven treatments. I spent months trying to figure out what kind of oversight exists for such clinics, only to discover a confusing patchwork of laws that vary from state to state. What’s more, many of the clinics I found were affiliated with practitioners with long disciplinary histories that included allegations of improper diagnoses, botched operations and patient deaths.
Alternative treatment protocols like the one my dad received at Envita are often not covered by insurance and can cost families tens — if not hundreds — of thousands of dollars. My parents were able to shoulder the expense, but there are many whose decision to seek care drives them into serious debt. I came across hundreds of GoFundMe pages of people asking their communities for help and spoke to several families whose loved ones sold off assets or ran through their small savings to afford such treatments. Some claimed they were betrayed or misled by their clinics but felt their only recourse was to write a bad online review. (I would also later leave Envita a one-star review online.)
As I pored through my dad’s Envita records this year, I tried to understand what, exactly, my family spent so much money on. Envita told me that my dad came to them with an “extraordinarily serious and complex medical condition” and that they only selectively take on such cases. They said his protocol was based on his “specific clinical circumstances” and other factors including the severity of his disease. But when I asked several oncologists across the country to take a look at his records from Envita, they were stunned. One told me that he struggled “to identify a biologically plausible or mechanistically coherent rationale” for much of my dad’s treatment plan. Reading the records, he said, made him “sick.” Another wrote back, in all caps: “OH DEAR.”
What has been the hardest for me to learn, though, is just how doomed my dad was from the moment he was diagnosed. I recently spoke to my dad’s oncologist at Memorial Sloan Kettering, Dr. Mark G. Kris, who said sticking with a conventional regimen of chemotherapy may have eventually improved my dad’s quality of life. Still, no matter what he did, his chance of long-term survival was slim. I have racked my brain to pinpoint a moment when this futility was made clear. But I cannot find one.
Kris did not remember my father; it has been almost seven years, and he was his patient for only about a month. But when I explained my dad’s decision to abandon conventional oncology and asked what he thought, his answer surprised me: “I could not promise him his life back,” he said. “So in that context, he needed to decide how he felt best to fight it.” Kris said he supports patients’ doing whatever they need to feel hope, particularly when they’re as sick as my dad. But, he cautioned, the only thing worse than no hope “is false hope.”