Following the 14th Annual Meeting October 12-14, 2018, NASPCC conducted a separate Bone Health Access Roundtable at The Liaison Capitol Hill, Washington, D.C. on Sunday, October 14 from 1:00 p.m. – 5:00 p.m., followed by a dinner with the attendees. Present were Johnny Payne, Don Lynam, LaTanya Patton, Merel Nissenberg and Tom Kirk (all of whom are on NASPCC’s Executive Committee); along with Elizabeth Franklin of Cancer Support Community; Anna Hyde from the Arthritis Foundation; Maureen Rigney from Lung Cancer Alliance; Walt Dardenne (Advanced Prostate Cancer Support Group in California); NASPCC representatives Gabe Rosko (New Jersey), Renee Savickas (Colorado), Beverlyn Eckert (Arkansas), Dave and Doreen Hulbert (Minnesota), and James West (Florida); Breast Cancer Advocates Vernal Branch and Valerie Fraser; Samuel Denmeade, M.D. of Johns Hopkins; Karl Sjostrand, Ph.D. of Progenics; and Linda Murakami from Amgen.
Dr. Denmeade presented on bone involvement in cancer and the need to use Bone Targeting Agents (BTA’s), and Dr. Sjostrand demonstrated accurate bone health imaging for use by clinicians through the Automated Bone Scan Index. Elizabeth Franklin and Anna Hyde both talked to the Roundtable participants about Step Therapy and why we should care, as the insurance rule which is being utilized by certain private insurance companies and will be applied to Medicare Advantage patients starting January 1, 2019 is likely to interfere with access to prescribed treatments for cancer patients. There was discussion about the 10 new states that have passed legislation on step therapy and patient protections, and the need to make sure that those laws are in fact implemented.
Don Lynam, Chair of NASPCC’s Advocacy Committee, agreed that we want to make Step Therapy a priority issue for our organization and hopefully lead the prostate cancer community in this effort, as well as to join state and federal activities geared for that purpose. We will also explore a meeting with Representative Ruiz of California who sponsored federal legislation on Step Therapy that needs to be reintroduced in the new Congress. NASPCC will join efforts by multiple foundations and advocacy organizations in the Step Therapy efforts that they have made and continue to make.
On September 1, 2015, the Patient-Centric Prostate Cancer Collaborative Coalition (PCPC3), a strategic alliance between NASPCC and six other national prostate cancer organizations will officially come to fruition. PCPC3 is a group of independent, not-for-profit, patient-centric organizations whose primary, shared goals include the education and support of men with diagnosed with prostate cancer, their family members and care-givers, and all men at risk for prostate cancer.
The founding members of PCPC3 are:
- National Alliance of State Prostate Cancer Coalitions (NASPCC)
- Patient Advocates for Advanced Cancer Treatments (PAACT)
- Prostate Cancer International (PCaI)
- Prostate Conditions Education Council (PCEC)
- Prostate Health Education Network (PHEN)
- Us TOO International
The members of PCPC3 are dedicated to
- Ensuring that all adult males and their families understand and are aware of their risk for diagnosis with prostate cancer
- Providing information, education, and support for men who are diagnosed with prostate cancer — and for their care-givers and family members
- Advocating for and educating patients about opportunities for high-quality diagnosis, management, and treatment of prostate cancer and its consequences by primary care and specialist clinicians of all types
- Advocating for advances in the diagnosis and management of prostate cancer over time
- Eliminating prostate cancer as a significant clinical risk factor to the greatest extent possible
For additional information please see the PCPC3 web site at www.pcpc3.org.
September was first designated National Prostate Health Month (NPHM) by the American Foundation for Urological Disease (AFUD) in 1999. AFUD is now known as the Urology Care Foundation. Originally the aims of observing NPHM were more restricted, concentrating on making the public better informed about prostate health issues.
September is Prostate Cancer Awareness Month (NPCA). NPCA is extremely important as it provides a specific, month-long opportunity to educate all Americans about prostate cancer and offset what appears to be most people’s opinion, which is that prostate cancer is an unimportant cancer that most men will “die with, and not from”.
That impression is not always the case. Prostate cancer is the second leading cause of cancer death in American males, after lung cancer. Men and their loved-ones should be aware of the need for informed decision-making in prostate cancer. NPCA provides us the opportunity to emphasize the importance of men having an informed discussion with their physicians about prostate cancer testing, because if a man has aggressive or potentially lethal prostate cancer then time is of the essence in receiving treatment.
As President of NASPCC I am very proud of the activities that many of our NASPCC coalitions and states will be conducting during NPCA (see below) and implore others, including those not affiliated with our organization to do the same.
Merel Grey Nissenberg
President, National Alliance of State Prostate Cancer Coalitions