There has been no increase in federal funding for cancer research since 2001. That means–in real dollar terms–the United States government is spending half as much now as it was in 2001 once you figure in inflation.
Drug companies only want to fund sure winners. They want access to patient files. And they don’t want to fund research into the longterm side effects of drugs that have already been approved by the FDA.
Insurance companies won’t pay for anything they view as experimental.
Anything creative in cancer research has to be funded from the unrestricted funds raised through private fundraising efforts.
Those are the headlines from my day at the Dana-Farber Cancer Institute Leadership Summit. They read as an indictment of the way both the federal government and private enterprise currently view the kind of research that needs to be done if we are going to find better answers than we have for the cancers we are beginning to get a handle on–not to mention those like NET where we are years away from having a cure–or anything that really looks like one.
That’s why what the Jimmy Fund, the Marathon Walk, the Pan Mass Challenge and a slew of other fundraisers raised last year matters so much. Without those funds there is no creative, basic research. Without those funds there is no Program in Neuroendocrine and Carcinoid Tumors. Without those funds we have what we have for treatments right now and not much else.
That would mean 10 percent of children with the most common form of leukemia would continue to die–and those we have cured would continue to have a lifetime of long term side effects we are only starting to learn about.
That would mean there would continue to be be precious little beyond our current palliative drug regimen for those with NETs and CS.
That would mean fewer birthdays, fewer anniversaries, fewer days with children, wives, and husbands.
Last year, Dana-Farber raised $168 million through charitable efforts. Eighty-nine cents of every one of those dollars went into funding research the government can’t afford to fund and private companies won’t fund. It went to fund research into the genetics of NET; it went to fund the Profile Project that looks at every individual patient’s cancer genetically and treats it based on what it is and how it works; it went into the search for new kinds of cures that are less likely to take patients to the edge of death to kill their cancer.
I drove home from Boston again this afternoon without Jane. I’ll have dinner again tonight without her. I’ll go to bed tonight without her.
I’ll do all those things because neither the government nor private enterprise thought her cancer was important enough to spend money on.
Dana-Farber has shown this year that they think it is important enough to spend money on.
We need to help them find the money to keep their research into NET and Carcinoid Syndrome going.
We need to do it so fewer people are driving home alone.
September 9 I will walk the Boston Marathon again. Help support that walk with the biggest donation you can afford. I’ll match it dollar for dollar up to $5,000.
