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.
