Does The Cancer Moonshot Really Cover Everything?
When Obama announced the Cancer Moonshot initiative , I admit I didn't jump to cheer what appeared to be a huge breakthrough for the cancer community. So why wasn’t I thrilled by this news?
My years advocating, first for my late husband and then on behalf of patients and caregivers nationwide, exposed me to enough research and patient stories to know, without being a medical expert, that there is no simple answer to curing cancer. Cancer is complex and cunning by nature. Yes, research happening under the Moonshot initiative can help us learn what won’t work or what may.
As an advocate, I'm held back by the following questions that should be asked about the Moonshot Initiative:
- 1. What about the millions of survivors, and not just those completing "curative treatment", struggling NOW with the impacts of cancer - and all future survivors whose lives may be extended by the Initiative?
- 2. Will it address financial toxicity, fatigue, body image issues,
- ...you know, the LIFE part of it?
- 3. Can it better fund the creation of survivorship care plans – a tool that we’ve known helps those with cancer cope better (yet, conservatively, more than 10 million survivors are still without)?
- 4. Who is representing the voice of the cancer patient, their caregivers, and families? It's been noted that few to none non-medical professional survivors have a voice in this conversation.
- 5. What is being done specifically to address concerns of the metastatic community?
- 6. How can existing initiatives, such as the Commission on Cancer 2012 Mandate (updated in 2016 due to challenges including time and funding resources) receive the resources needed?
Instead of being swept up in the emotional storytelling of ‘we will find a cure’, if we are to funnel millions of dollars into this initiative, we owe it to ourselves to ask these important questions that need answers.
Everyday social media sites and my coaching groups are filled with stories of the struggles including not just physical, but mental, emotional, social, and spiritual. Cancer deals crushing blows to finances, careers, relationships, independence, happiness, and more. Treatment is just one of many steps in the process of dealing with cancer after a diagnosis. Yet funding for survivorship care plans and programs continues to be limited.
Do we need to find better treatments and ways to cure cancer? Of course! But we also need to pay attention to the 'and; part- everything else.
For survivors who are in remission or managing chronic disease, we see a frustratingly uninformed way of thinking that they should be happy treatment is over – or that it could have been worse. I firmly believe, after everything my late husband and I experienced during his 'survivorship', that morally and ethically, as we fund life extending treatments we must also fund survivorship resources. We need to help people not only extend the number of days they live but also the quality of life they have during those days.
The most recent report by the Blue Ribbon Panel advisory group for Cancer Moonshot, delivered on September 7th, is being extolled for ‘crystallizing’ the plan with 10 recommendations. Clarity is always a good thing. However, what is also clear is that the ambitious plan to accomplish in 5 years that which would normally take 10 will require significant funding. A recent article in Science Magazine pointed out that the $755 million requested by President Obama for the 2017 fiscal year, which begins October 1st, has not yet even made its way into any draft spending bills.
While there is definitely value in the 10 recommendations that have been made, I agree with Tyler Jacks of the Massachusetts Institute of Technology in Cambridge, who is co-chair of the Blue Ribbon Panel, that we are not seeing anything particularly ‘surprising’ in that the focus is on existing research efforts that could be fast-tracked.
It seems fair to question the soundness of this tactical approach and whether it will lead to the breakthroughs we would hope can come from such significant investments.
The biggest missing piece is that the 10 recommendations appear to focus entirely on the medical experience of cancer. Survivorship, quality of life, and resources to address the psychosocial aspects of cancer don’t seem to be getting the attention given the more than 14 million survivors and their caregivers-a number that will continue to grow as treatments and outcomes improve.
So before we all jump on the bandwagon shooting fireworks that we're on the path to finding a cure...before we succumb to the Hollywood type headlines that these kind of declarations generate, let us press pause and ask, "what will be done about the aftermath of living with, through, and beyond cancer?"
What are your thoughts on the newest updates behind the Moonshot Initiative? Leave a comment below or click to join the community here!
Photo courtesy of Doug Walters