National Coalition for Cancer Survivorship Roundtable - Summary

(Attended by volunteer Christina McDonald on behalf of the Cutaneous Lymphoma Foundation) 

November 2018 – The day of the National Coalition for Cancer Survivorship (NCCS) Roundtable was the first snow day of the season in DC, so we had an interesting weather start to the day.

NCCS was new to me. I learned that it is a non-profit patient advocacy organization.  A diverse group of individuals attended the event, including representatives of patient advocacy organizations, cancer institutes, oncology-related professional associations, pharmaceutical companies, cancer institutes, and the federal government. Over the course of the day, there were several panel discussions, a presentation, and recognition of award recipients.

My main takeaway is that NCCS offers a forum for interesting, relevant, and current discussions. I think it would be useful for Cutaneous Lymphoma Foundation to continue to participate and attend NCCS events.

Within the broader context for the Cutaneous Lymphoma Foundation, here are key takeaways from the other sessions:

Mid-Term Elections: The Impact on Cancer Research & Care

A panel, with a House Democrat and a Senate Republican, discussed the meaning of the elections on cancer policy work.

  • There seemed to be consensus that there is not likely to be a lot of action in health policy at the federal level (due to the split between the House & Senate).
  • Expect, however, to see a lot of action at the State level.  According to the Democrat, keep an eye on the States to find out what flexibilities they find.  According to the Republican, the States are where you will see the most party difference.
  • Drug pricing: One view was that the Democrats would be willing to work with the Trump Administration, because addressing drug pricing makes lives better.  The other view took the position that Democrats might work with folks at HHS etc. but questioned whether Democrats would work with the most senior of the Republican leadership (i.e., the White House or Congressional leadership) on these matters.
  • Re Medicare: While there may be attempts to flesh out the meaning of “Medicare for all,” there’s not likely to be much action on Medicare.  Do expect to see discussions about Medicare among Democratic Presidential candidates.

Drug Pricing Blueprint & its Impact on Cancer Care

This panel raised a lot of interesting ethical and policy questions about drug pricing.

  • For example, consider that $300K is the once in a lifetime cost for a transplant vs. $300k for drugs that may add one year to a person’s life. 
  • Consider that when a family member is sick, people want options and want those options to come to market faster. Should money be put into research & development or into decreasing existing drug prices?
  • Speaking broadly, these matters involve difficult choices, difficult issues to balance and there are always trade-offs.
  • Drugs seem to be getting through the FDA approval process more quickly than in the past, due in part to the work of nonprofit advocacy groups.

Transitions in Survivorship Care

[Note from CLF: may not be applicable to cutaneous lymphoma patients who may require specialty care throughout their lifetime]

  • Outcomes in cancer care have improved dramatically (people can often live a natural life span) yet our culture has not yet changed (people stay, for decades, with their oncologists). How do we determine high vs. low risk individuals? (High risk should stay with oncologists & low risk transition to Primary Care Physicians (PCPs)). How do we get people to change behavior?
  • There is no systematic way of transitioning people to PCPs/cancer clinics. As a result, people get either too much care or too little care.
  • The number of cancer survivors is much higher than 15 years ago.


  • There is not enough time or oncologists for all cancer survivors to be followed by an oncologist for years.  And the over-reliance on oncologists sends the wrong message to patients.  For example, that other more common health issues like hypertension, lipid issues, diabetes, etc. are less important than cancer to manage. 
  • By sheer increase in the numbers of cancer survivors, PCPs are more informed about cancer. PCPs are an important member of the care team regardless of the level of risk of the patient & regardless of whether the patient is in or after treatment.  More attention to where cancer survivors manage their health by the appropriate clinician  including cancer surveillance, is needed.


For more information about the NCCS and the NCCS Roundtables, visit: