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Media Briefing on ICER: St. Louis

May 24


  • Patients Rising Says Any Proposal that Cuts off Access to Life-Saving, Life-Changing Medications Is Not Acceptable
  • CMPI Says ICER’s Assessment of the Value of New Multiple Myeloma Medicines Will Reduce Innovation, Delay Access and Cost Patients Their Lives
  • Aimed Alliance says If ICER Succeeds Patients Would Be less Likely to Survive Certain Types of Cancer than Those in some Less Developed Countries

St Louis, MO – May 24, 2016 –Patients Rising, – a non-profit patient advocacy organization – led a briefing to detail the risks to patients from so-called “value-frameworks” that limit spending on new and innovative treatments for cancer and other serious diseases. The briefing was held in response to proposals from ICER, the Boston-based Institute for Clinical and Economic Research, and its mid-west affiliate CEPAC, initially focused on the blood cancer multiple myeloma. Patients Rising challenged the basic premises proposed by ICER and presented experts who detailed why ICER’s economic benchmarks will harm both patients and medical innovation.

“ICER’s limits on access to new therapeutics would result in 44,000 fewer lives saved for patients with multiple myeloma over a five year period,” said Robert Goldberg, Ph.D., of the Center for Medicine in the Public Interest who co-hosted the briefing. “Further, ICER’s proposed price cuts would eliminate  60 percent of drug discovery, having a huge impact on the future of the fight against cancer.”

Stacey L. Worthy, Esq., Director of Public Policy at the Alliance for the Adoption of Innovations in Medicine (Aimed Alliance), also a co-host, added, “ICER is proposing a system similar to the one used in the UK, where patients are less likely to survive certain types of cancer than those in less developed countries, such as Malaysia and Indonesia. U.S. patients with cancer can expect the same level of deterioration in care if we let ICER define what represents value in healthcare.”

ICER says its proposals are intended to address what its members see as the rising cost of healthcare. However, Patients Rising has long maintained that any discussion of healthcare spending should be based on fact, not rhetoric, and should look at healthcare as a whole not just target new therapeutics.

“Any proposal must put patients first,” said Jonathan Wilcox, Co-founder and policy director of Patients Rising. “The ICER plan will simply result in healthcare rationing. We will oppose any plan that replaces medical decisions with a mathematic formula.”

ICER plans future “value frameworks” that cover lung cancer and multiple sclerosis. The current ICER framework addresses multiple myeloma, a rare blood cancer of cells in the bone marrow. This is a cancer that cannot be cured, but where much progress has been made extending remissions with a growing arsenal of new, innovative treatments that can be used in combination and in sequence.

“When I was diagnosed with myeloma I was given five years to live. Now I’m alive and feeling very well six years later,” says Tom Hardy. “I outlived the prognosis thanks to multiple treatments.”

Nine year survivor John W. Killip, D.D.S. adds, “Where would I be if they based the value of my treatment on five-year survival. It is inappropriate that ICER or anyone challenge the value of my treatment to me, my family, or my continued ability to generate income!”

The Aimed Alliance concludes there are cost-saving alternatives that don’t harm the patients, but actually improve care. One insurance company reduced costs by 15 percent by offering additional care to its most expensive-to-treat patients such as arranging for caregiver calls, helping to  organize medications, and assisting them in daily tasks such as  obtaining groceries. Providing access to quality, patient-centered care and removing barriers to innovation is one way to save money without the need to threaten patients’ lives.

Featured Speakers:

Jonathan Wilcox
Co-Founder and Policy Director of Patients Rising

Jonathan leads the strategic and policy direction for Patients Rising, a non-profit advocacy organization that fights for access to vital therapies and services for patients with life-threatening and chronic diseases. He has a background in corporate communications and public affairs and serves as an Adjunct Professor at the University of Southern California’s Annenberg School for Communication.

Jonathan believes that any proposal that cuts off access to life-saving, life-changing medications is not acceptable and that any plan, like ICER is proposing, that replaces medical decisions with a mathematical formula is a problem, not a solution.

Jonathan has been a featured on-air commentator for ABC News, NBC News, Fox News Channel, CNN, several national radio programs and international networks. His editorial commentaries have been featured in Investor’s Business Daily, National Review, Sacramento Bee, Los Angeles Daily News, San Francisco Chronicle, Washington Times, Houston Chronicle, Dallas Morning News and Cleveland Plain Dealer.

Robert Goldberg, Ph.D.
Co-Founder and Vice President of the Center for Medicine in the Public Interest (CMPI)

Dr. Goldberg co-founded the non-profit, non-partisan organization, CMPI, to promote innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. He is an expert on Medicare reform, comparative effectiveness and FDA’s Critical Path Initiative.

In his new white paper Dr. Goldberg describes why ICER’s recommendations limit care for patients with rare diseases such as Multiple Myeloma. His findings prove that many new treatments offset more expensive costs such as hospitalization while allowing patients to be more active and productive. He believes doctors, patients and pharmaceutical companies need to work together to develop a sustainable payment model.

Dr. Goldberg has written articles on drug policy related topics for elite media outlets including The Wall Street Journal, The Washington Post, The Los Angeles Times, National Review Online, The Chicago Tribune, The New York Post and others. Goldberg is the author of Tabloid Medicine: How the Internet Is Being Used to Hijack Science for Fear and Profit. Learn more about Dr. Goldberg’s perspective on today’s drug policies at www.DrugWonks.com.

Stacey L. Worthy, Esq.
Director of Public Policy, Alliance for the Adoption of Innovations in Medicine (Aimed Alliance)

Stacey serves as the Director of Public Policy for Aimed Alliance, a nonprofit organization that takes action to improve health care in the United States by expanding access to novel, evidence-based treatments and technologies. In this role, she provides unique legal insight through research and analysis of laws, regulations, and legislation; develops policy; manages advocacy initiatives; and oversees coalition-building efforts of allied organizations focused on advancing the common goal of improving provider-driven, patient-centered care.

Stacey’s new white paper, Health Care Rationing Proposals Ignore Patients, Undermine Progress, and Would Lead to Deterioration in Care on Par with the U.K., examines existing health care rationing formulas, often referred to as “value-based frameworks.” The paper compares the formula used by the U.K.’s National Institute for Health and Clinical Excellence (NICE) with that of the Institute for Clinical and Economic Review (ICER), and concludes that if ICER’s rationing formulas are implemented in the U.S., patients can expect a significant deterioration in quality care. The paper also recommends alternative strategies insurers can use to reduce health care costs in the U.S. that do not limit patient access to high quality care or stifle innovation. For more information on the Aimed Alliance and Stacey’s perspective on the ICER framework visit www.aimedalliance.org.

John W. Killip, DDS (Kansas City, MO)
Myeloma Survivor | International Myeloma Foundation

John W. Killip, DDS, is a 9-year survivor of Multiple Myeloma.  Following his initial diagnosis in the fall of 2007, he was treated with an autologous stem cell transplants (using his own cells, instead of donor bone marrow) in March 2008.  He remained in medication supported remission for more than 4 years, and in October 2012 received his second transplant.  Dr. Killip remains on a maintenance program requiring bi-monthly pharmaceutical injections that has kept him progression free for more than three-and-a-half years.

Dr. Killip continued to work full-time throughout treatment until retiring from his position as Associate Dean for Student Programs at the University of Missouri-Kansas City School of Dentistry in December of 2012. Currently he serves as the co-coordinator of the Greater Kansas City Myeloma Support Group, and working with the International Myeloma Foundation Advocacy team. He is also a member of the Kansas University Cancer Center Patient Advisory Committee. Additionally, John is an active patient-to-patient phone mentor, and speaks nationally as a member of the Multiple Myeloma Journey Partners.

Dr. Killip notes that his treatment has also allowed him to actively travel the world (Nepal, China Tibet, Japan and southern Africa) as well as pursue his wood working hobbies.​ He is actively involved with the International Myeloma Foundation.

Tom Hardy and his wife, Taybeh (St. Louis, MO)
Myeloma Survivor | International Myeloma Foundation


Thank you to our partners who helped to make the content for this event possible:

Aimed Alliance | Center for Medicine in the Public Interest | International Myeloma Foundation

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