Some advocates say research focus is promising but recommendations do not address survivorship, which affects things such as mental and financial health
Though it has been 18 years since a doctor first told Jennifer Stewart she had cancer and she can now call herself a survivor, she is excited about the White House moonshot panel to cure cancer and what it means for people who are just starting their journey through the disease.
Less than nine months after Barack Obama announced the plan, a panel of top cancer scientists and patient advocates on Wednesday presented a report on how the moonshot could destroy the disease.
For cancer survivors like Stewart, the panels 10 recommendations present a promising model. If I could spare anyone from going through even a portion of what I went through, I would in a heartbeat, said Stewart, who was diagnosed with acute myelogenous leukemia at age 20.
The Cancer Moonshot Blue Ribbon Panel initiatives, led by Vice-President Joe Biden, include organizing a clinical trial network for immunotherapy and creating national databases of patient and clinician information to profile cancer cases and model tumors. This information-sharing is meant to further research, but is also seen by survivors as having the potential to fill gaps in the isolating process of learning about, and coping with, a cancer diagnosis.
Ive relied on my community, the young adult cancer community, to find out about things they are talking about putting in the database, said Stewart, a volunteer with the not-for-profit Stupid Cancer.
She said some information, like how to be a part of clinical trials, is typically not known to people when they are first diagnosed. For people less connected to the cancer community or far from top research facilities, acquiring this information can be a slow process that the moonshot databases would address.
But some survivors worry they will be left behind in the plans for the biggest federal push against cancer since Richard Nixon declared a war on cancer in 1971. Moonshot aims to accomplish 10 years of cancer research in five years, so the panels report emphasizes science and research, not what happens to those who survive the disease.
If at the end of the line a vaccine comes out of this and we dont have to worry about this any more, well, wow, thats great, but youre still not educating me on what I should be doing, said Mailet Lopez, a breast cancer survivor and co-founder of the social network for cancer patients, survivors and supporters, I Had Cancer.
She is excited about moonshot, but had hoped the recommendations would do more to address survivorship, which affects things such as mental health, fertility and financial health for a lifetime. I want to know what Ive been doing or what Ive done or what I can do to prevent this, Lopez said.
There are approximately 15.5 million people in the US who are cancer survivors, according to the American Cancer Society. And there are expected to be 1.6m new cases nationwide this year.
Emily Giegerich, communications director at I Had Cancer, said these concerns about survivorship were echoed in the social network, which has more than 250,000 users worldwide. Even if all these 10 recommendations are met, there is still life after cancer and there are still so many things people dont talk about, she said, noting that most people with cancer are only patients for a short percentage of time.
One of two patient advocates on the 28-person Blue Ribbon Panel, David Arons, the National Brain Tumor Society CEO, said the highest and best use of moonshots time was to find things that are going to destroy cancer.
Thats why there was such a strong focus on science and on research and things that are going to accelerate drug development, and the development of new technologies which will help us understand better if a tumor exists, if a cancer exists, if a cancer is growing, whether we can detect it early, whether we can treat it early and whether we can save patients, Arons said.
He said tools like the national databases are meant to help researchers and clinicians understand patients better by giving them the opportunity to put their data in a national network and have improved access to clinical trials. Were trying to end cancer, were trying to make cancer all different types of cancer a chronic, manageable disease, Arons said.
To do this, of course, will require funding.
Obama asked for $1bn to fund moonshot and Biden secured a $264m increase in federal funding to the National Cancer Institute before moonshot was announced.
I hope it comes to fruition, said Stewart, who also said she hoped moonshot would not lose sight of the long-lasting effect cancer has on survivors.
I think we need to take what we [the cancer community] have, and a lot of it is out there already, and make sure that thats all incorporated into everything moonshot is doing because the more people that survive cancer the more important survivorship is going to be, and how people deal with that and the issues can only come up along the way are only going to become more prominent and more important.