Dear Mr. Vice President,
I want to personally thank you for all you’re doing for cancer research right now. It’s so powerful how you’ve been able to take the indescribable grief of losing your son, and turn it into something that will hopefully spare other families from experiencing the loss your family has suffered.
However, I have one major concern about how your Cancer Moonshot program is playing out: it doesn’t appear that you’re taking terminal patient voices into account in any formal way. I noticed when the Moonshot’s Blue Ribbon Panel was announced that there don’t appear to be any cancer patients on the panel who aren’t also researchers. I noticed one patient advocate listed–the only on the panel without an MD or PhD after their name–but no actual patients, and none of us who are dying from cancer. And, it’s playing out in a similar manner in the Moonshot Working Groups. Only a couple of the groups have anyone without a PhD or an MD after their name.
This is something that remains a serious problem in cancer land, despite recent advances in patient-researcher communication. We terminal cancer patients can be hard to coordinate with. We get sick, we have days where our fatigue overcomes us, and we can’t always travel to DC for high-level meetings with government and researchers because treatment gets in the way. And maybe that’s why advanced/metastatic patients aren’t usually involved in deciding what research questions get the bulk of the funding, and maybe that’s why funding for metastasis research is alarmingly low.
Many of us have horrifying stories about oncologists writing us off as soon as we’re diagnosed with an incurable cancer, sending us home to settle our affairs without even discussing the available treatment options. And a lot of times, cancer research feels like that. We’re out here dying, and we often feel that nobody is listening, because we rarely have a seat at the table.
When the Moonshot was announced, I was so filled with hope. I sat crying with joy watching the State of the Union, knowing that someone who really gets what it’s like to lose a family member to terminal cancer was going to be spearheading the work. But seeing that no metastatic patients are part of deciding how to tackle the enormous challenge of saving lives made me cry in a different way. They were tears of anger and frustration and despair.
I hope you’ll consider including metastatic patients as decision-makers in the Moonshot program. If you’d like, I’d be happy to send you a list of amazing patient-advocates with demonstrated track records of working collaboratively with researchers–people like Janet Freeman-Daily, who works on lung cancer issues, or CJ Cornelius, who works on breast cancer issues. These patients can bring an important perspective to the Moonshot’s work, and their voices deserve to be heard.
I look forward to your reply.
Co-Founder, MET UP