Young Survival Coalition Expresses Concern About Overlooked Moonshot Recommedations

I haven’t written much about the President’s Cancer Moonshot initiative recently and as much as I would like – perhaps because following some Blue Ribbon Panel recommendations and a large number of organizations and individuals expressing, in general, positive feedback among the cancer community, there hasn’t been a lot of news about next steps.  I think the Vice-President spent some time overseas promoting this while the national news media seems consumed by the upcoming election.

Of course, it is hard to please everyone, all the time, but one patient advocacy group was mentioned in a recent article in Oncology Practice that refers to a couple of key issues/patient populations I think are worth mentioning — namely, young adults and the metastatic community. Both are significant issues that I think will come out more and again as we enter October or “Pinktober” and National Breast Cancer Awareness Month. Young Survival Coalition (YSC) as the story below reprinted mentions thinks there should be more resources put towards young(er) adults and patients with metastatic disease. 

While pediatric patients are mentioned in the recommendations, and many gains have been made among childhood cancers, cancers in younger adults, according to YSC were overlooked.  On a personal level, watching friends die of colon and esophageal cancer and sarcoma in their late 30s and early 40s – I agree.  While we tend to think of cancer as a disease of aging, this patient population appears to have been overlooked and should be addressed. 

The metastatic community of course was also overlooked and I understand for patients in this category, they feel shunned.  Hashtags such as #dontignorestageiv and #thisismbc are commonplace among posts and tweets within the metastatic community.  Historically, only a small percent of available dollars has gone towards this patient population.  Again, another spectrum of oncology patients.  This I think will continue to be a challenge – a population squeezed for resources and clinical trials.  A lot of our emphasis on the war on cancer has been to educate, screen, detect at an early stage, surgical based treatments and adjuvant chemotherapy and radiotherapy for local control, in the hopes of preventing local or distant recurrence.  No easy answer here.  Prevention is key as is appropriate behaviors to limit incidence of disease – not only cancer, but other major causes of morbidity and mortality – such as heart disease, diabetes, COPD and kidney disease. 

That being said, is an ounce of prevention worth a pound of cure? Not to folks who present with Stage IV disease or progress rapidly to Stage IV disease. And how do we as a society balance prevention and early screening measures with treating those with advanced disease? I think we are learning more about active screening and surveillance that, if, physicians follow along, may tilt this a bit — for example, we recently learned that surgery versus radiation versus “watch and wait” in early stage prostate cancer are just as effective treatment “methods” with recent headlines such as “Ten-year survival rate in early-stage prostate cancer unaffected by treatment choice”.  AND we still have perhaps excessive PSA screening despite this…In breast cancer we are adjusting recommendations for age-appropriate screening and perhaps a shift away from tissue-conservation surgeries and going back towards recommending mastectomies. 

Do we over screen and over treat early stage disease at the expense of metastatic disease? Perhaps that is the question.  But I do agree the committee needs to relook at this for patients whose biology limits their treatment options currently with serious quality and quantity of life issues. 

Overall, the response to Blue Ribbon Panel recommendations for guiding the Cancer Moonshot initiative were well received, though some patient advocates say a few key issues were overlooked.

In early September 2016, the Blue Ribbon Panel, a group of more than 150 scientists, clinicians, patient advocates, and industry representatives convened by the National Cancer Institutes’s National Cancer Advisory Board, published its Top 10 recommendations to guide future endeavors of the Cancer Moonshot Initiative.

The recommendations, which were informed by input from the research community and the public, emphasized “the importance of direct patient engagement in cancer research, a deeper understanding of why some therapies work and others do not, the dynamics of tumor evolution, and the need for mechanisms of data sharing, access, and analysis,” wrote Dinah S. Singer, PhD, and two other cochairs of the Blue Ribbon Panel in an article published in Science (2016 Sep 7. doi: 10.1126/science.aai7862).

“The recommendations that were announced today by the Cancer Moonshot Blue Ribbon Panel are vitally important to accomplishing the goal of the National Cancer Moonshot Initiative, which is to achieve a decade’s worth of advances in five years,” wrote American Association for Cancer Research President Nancy E. Davidson, MD, in a statement.

“The panel’s thoughtful work makes an important contribution to the Cancer Moonshot Initiative,” wrote American Society for Clinical Oncology President Daniel F. Hayes, MD, in a statement. In an interview, Dr. Hayes added that innovations in information technology and the focus on improving interoperability of electronic health records were two important strengths of the recommendations that will be “critically important to deliver high-quality, high-value oncology services to individuals with cancer.”

Michelle Esser, senior program manager at the Young Survival Coalition (YSC), agreed that the recommendations are good initial steps. However, she pointed out two issues that the recommendations overlooked. “First, is the lack of mention or understanding of the adolescent and young adult (AYA) oncology patient population,” Ms. Esser noted during an interview. “The report specifically called out pediatric cancer as an area of needed research, but AYAs, whose survival rates lag behind those of older and younger patients with a similar diagnosis, and for whom cancer is the leading cause of disease-related death, were not mentioned.”

Second, there was little mention of cancer metastasis, she said. “It is not an early-stage cancer diagnosis that kills, it is when cancer metastasizes and spreads that it becomes deadly. Out of the 10 recommendations only 1 mentions metastasis. If we want to make a difference in cancer outcomes, there needs to be focus on understanding why metastasis occurs, how to prevent it, and how to cure it.”

In order for these recommendations to really expedite the nation’s progress against cancer, “It is crucial that Congress provide the necessary funding to support the priority projects identified by the Blue Ribbon Panel and those we will hear about from the Task Force and Vice President’s Executive Reports later this year,” reported Dr. Hayes, a sentiment echoed by Dr. Davidson.