Metastasis

An Open Letter to Vice President Biden

Posted on by Beth Caldwell

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.

Sincerely,

Beth Caldwell

Co-Founder, MET UP

www.metup.org

Hey Allies: Time to Help!

Posted on by Beth Caldwell

A lot of times, people who want to be allies to to the metastatic community ask “How can I help?” Beyond listening and being emotionally supportive, I don’t always have a specific thing I can ask them to do–but today I do! And it’s suuuuuper easy to do. You can do it in your pajamas. You can do it at work. You can do it sitting on the toilet while scrolling on your smart phone. (Don’t lie, everyone does it. This is why they invented Clorox wipes.)

Here’s what you do: Go to this webpage. Put in your info in the right hand sidebar. Click “Sign Now.” Then share it with your friends and family and ask them to do the same.

What is this thing I’m having you sign? It’s a White House petition. It works a lot like a change.org petition, except, if you hit 100,000 signatures, the White House promises to respond, unlike a change.org petition, which nobody is obligated to do anything with, no matter how many signatures you get.

Why did I start this petition? Here’s the situation: you may have been reading about the Cancer Moonshot that the President announced in his State of the Union speech this year. It’s an exciting time in cancer research–we now have the tools available to really make significant progress in preventing cancer deaths, and the Moonshot can help make that happen faster. Saving 5 years in research time could mean saving 200,000 lives in the US just in breast cancer alone, let alone across all cancer types, let alone across the world. 

I’m a big supporter of the Moonshot. A lot of its goals are really important and have the potential to be game changers for cancer patients, including metastatic patients. But there’s one key piece that I think is missing: there’s no specific goal on understanding metastasis. About 90% of all cancer deaths, across organs of origin, are caused by metastatic disease, and in breast cancer, that figure is almost 100%. Understanding the metastatic process–how cancer spreads, and how to stop it–is vital in ending cancer deaths. 

But currently, very little research money is being spent on understanding metastasis. In breast cancer, it’s only 7% of research dollars. This kind of underfunded research area, one key to preventing cancer deaths, is just the sort of thing the Moonshot should be working on. It should be bringing focus to areas that desperately need better research–and it’s doing that for childhood cancer, for epidemiology, and other important topics. I just firmly believe that metastasis research should be one of those topics.

So, my petition asks that metastasis research be added as a specific goal of the Moonshot. I’m not asking for money (although shifting funds from early stage cancers to those that cause most cancer deaths would also be delightful!), and I’m not asking to remove any of the other important goals the Moonshot has identified. I’m just asking for metastasis research to be added, because I believe adding it will save lives. 

If you tend to agree with me, please sign the petition, and share it as widely as possible and ask your family and friends to sign it too. Everyone has been touched by cancer in some way, and many of us have had family or friends pass away from a metastatic cancer–my grandmother died of metastatic melanoma–and so I hope we can all come together around the issue of metastasis research, so that less of us have to lose a loved one to cancer.