"One of the major drawbacks of this type of treatment is that it’s extremely expensive. Insurance doesn’t pay for off-label use of cancer drugs—even if Champions’s scientists are able to prove they will work. Rose and Shapiro wouldn’t say how much they paid Champions to find the perfect drug. “Let’s just say it was a lot of money and I felt lucky that I have the resources to be able to do it,” says Rose. “There’s no doubt that part of me feels a little guilty that others don’t have the ability to do it.”
"It has been said that the best way to survive cancer is to hold off dying long enough that a new treatment can be invented to save your life. That seems to be true now more than ever. Of course, for many cancer is still a death sentence. But Rose is a clear example that it doesn’t have to be. Through seven years of toxic chemotherapies and countless surgeries, he has never left his job (in fact, today he has three jobs—he’s the founder of San Francisco design firm SITELAB urbanstudio, a professor of practice in the Department of City and Regional Planning at the University of Pennsylvania and is running Urban Design+, another design firm, based in New York City). During his treatment, he and Josslyn even had a son, Ryder, now three and a half years old.
In many ways, Rose is living with cancer the way someone with HIV/AIDs would have shocked the world by doing so 10 years ago. The disease, once thought to be a debilitating death sentence, has become something that just needs regular care. According to Shapiro, “Before, when we were told there was only palliative care and they told us the best they could do was manage his disease, I thought that was a failure. But actually, it’s not a failure. You can live with disease in your body.”
Health plans, led by AHIP's Karen Ignagni are not only refusing to pay for cancer survival. And ASCO is enabling such rationing by developing an algorithm that determines 3 months of additional life is not worth spending money on. Or as Lowell Schipper, the head of the ASCO Value Task Force puts it, three months of life (using a $10000 cancer treatment) “it is not a large enough benefit to trump the greater benefits to many that would have to be foregone to provide it.”
It should be pointed out that in 2011, Schnipper remodeled his Maine summer home. The renovation cost $200,000 and took seven months.
When oncologists believe fixing up a second home is more valuable than 3 additional months of life, we have a real problem. Apparently the life of Evan Rose is worth less than Schnipper's hardwood floors.