LLS and the National Moonshot Cancer Initiative

Wednesday, June 29, 2016 I participated in a virtual town hall meeting sponsored by the Leukemia & Lymphoma Society as a part of the National Moonshot Cancer Initiative led by Vice President Joe Biden. I joined about 500 people across the country. This is just the beginning of the conversation.

I am eternally grateful for advancing the cures to end cancer. I am here today because of those dedicated scientists and medical researchers who persistently experimented and are keeping the cancer in my body at bay with three blue pills a day.

I have, however, some deep concerns about drug parity and access for Medicare cancer patients. Here is my mantra: If breakthrough drugs are not accessible to patients because the costs are out of range, it is a tragic situation. My drug costs $10,000 a month. It is keeping me alive. I have access to it through my clinical trial. When I am no longer in the trial, I will not have access to it, because I will not be able to afford the cost, because I will be on Medicare. What then?

Vice President Biden did mention the barriers to access breakthrough cancer drugs, such as the high out-of-pocket costs, but it was not addressed in depth. I have to keep telling myself, “Be patient, La Verne. It all takes time. But that is my frustration. How much time is this going to take? How many patients will die because they do not have access to their cancer drugs because of the financial burden?” This is when I do my tai chi and meditation and just breathe.

I always try to have a Plan A and a Plan B and sometimes a Plan C. Today I will not try to get ahead of myself. LOL. I will unveil a strategic plan and what LLS and I are going to do about cancer drug access in my next blog. Now to the summary of the virtual town meeting…

SUMMARY OF VIRTUAL TOWN HALL

I enjoyed listening to the excerpt of VP Biden’s speech. He said that in the year 2025 there will be 20 million new cases of cancer and 11.5 million deaths, if we don’t realize the urgency of finding cures for the 200 distinct types of cancer. His core mission is to double the pace of medical research progress in five years.

Brian Connell,* Senior Director, LLS Federal Affairs, mentioned that it is important to get the medical research findings out in the public as soon as possible so that “no one works in a vacuum.” He encouraged the interdisciplinary approach to cancer research and breaking down the communication barriers between not only researchers, but also others involved in clinical trials (i.e. data processors) in order to bring the best treatment to every patient.

Lee Greenberger, Ph.D.** spoke about clinical trials and access, as well as collaboration. The LLS website has the LLS Information Resource Center available for patients. He also discussed Dana Farber/Blood Cancer Research Partnership.

Greenberger said that hematologists and oncologists need to be brought together to further research.  A new project in Oregon called Beat AML is underway, because AML (acute myeloid leukemia) is a major problem. There have been no new drugs for that poor-prognosis cancer in the last 30 years. The Therapy Acceleration Program originated by Dr. Louis J. DeGennaro, LLS President and CEO, now has 45 partnerships with biotechnology companies, universities, etc. Another collaborative effort is realized through a specialized Center of Research Grants that has been formed.

Three 2016 goals were listed. The first 2016 goal is to reform the government’s clinical trial website (www.clinicaltrials.gov), so that patients have better access to clinical trials. The National Cancer Institute (NCI) site has a preview of the proposed navigation. The second goal for 2016 is breaking down silos at the FDA. An oncology center of excellence is being formed to streamline medical research information. The third 2016 goal is to increase medical research funding at the National Institutes of Health by $2 billion.

I also got to hear the story of my blood brother Doug Olson,*** a CLL survivor, who was Patient #2 in the Car-T 19 therapy at the University of Pennsylvania with Drs. June and Porter. We met two years ago in D.C. and I got to talk to him face-to-face about his gift of life.

There was not enough time to take many questions. One question was to define leukapheresis (a laboratory procedure in which white blood cells are separated from a sample of blood) and one question was about how to decide to participate in a clinical trial.

*Brian Connell joined the LLs in 2014 to take the lead in the federal legislative activities in support of the LLS mission to find cures and ensure patient access. As Legislative Director for Congressman Brad Ellsworth of Indiana, Connell was an advisor on health care issues. He also led the government relations team at the Medical Imaging & Technology Alliance (MITA). This is a trade association with the mission of increasing access to medical imaging and radiation therapy technology.

** Lee Greenberger, Ph.D.

Greenberger holds a bachelor's degree from the University of Rochester and a Ph.D. from Emory University. He has done post-doctoral work at Columbia University and was on faculty at the Albert Einstein College of Medicine. Greenberger has published more than 85 publications, mostly focused on oncology, during his research career.

***Doug Olson, Ph.D., Patient

Doug Olson received his bachelor’s degree in Chemistry from Maryville College and his Ph.D. in Medicinal Chemistry from Purdue University. Most of Doug’s career has been spent in the Medical Device and In Vitro Diagnostics industry. Doug served as President of DPC’s Instrument Systems Division and corporate Chief Scientific Officer prior to its sale to Siemens Health Care. Doug is the holder of eight U.S. patents and author of a number of publications. Doug is a cancer survivor and patient number two in the initial CART 19 clinical trial. He is on the Board of Directors of the Eastern Pennsylvania LLS chapter, BÜHLMANN Laboratories and BUHLMANN Diagnostics Corp and currently serves as Chief Operating Officer of BUHLMANN Diagnostics Corp.