The Daily Rise: Monday, June 13

Patients Rising Joins with the Global Liver Institute and Other Advocacy Groups in Commenting on ICER’s Next Target: Obeticholic Acid

We, as members of the liver community representing patients with primary biliary cholangitis (PBC),  appreciate the opportunity to comment on the Institute for Clinical and Economic Review’s (ICER) draft report on obeticholic acid (OCA) in PBC and non-alcoholic steatohepatitis (NASH) in preparation for the July 15 meeting of the Comparative Effectiveness Public Advisory Council (CEPAC). As liver community representatives we will attend the CEPAC meeting to present accurate information on the relevant diseases and call for more meaningful patient participation in the ICER process.

PBC is a rare, orphan disease, disproportionately affecting women, for which the introduction of OCA would result in the first effective treatment available to PBC patients in the last 20 years. The addition of OCA to limited available treatment options, is an eagerly awaited scientific and patient care advancement, potentially saving many lives since the majority of patients are either intolerant of or do not respond to current therapies.

Patients Rising has joined forces with many in the liver community to sign this letter to Dr. Steve Pearson and ICER. We also wrote on our comments to ICER. As an organization we are fundamentally against value frameworks as a means of cost control. Value frameworks, de-value patients in the end by limiting access. here are so many other variables that go into this equation. A balanced dialogue in the national conversation is the answer, but patients have to demand it.

Final ICER Report: Multiple Myeloma

ICER relased it’s final report last week and Eric Palmer at FiercePharma gives a nice wrap-up of their final findings.

Eric Palmer at FiercePharma writesBut from a patient’s perspective, the ICER evaluators found lots wanting in the way drugs are tested, approved and paid for. From a cost side of things, they point out that it is not just the cost of the specific treatment that patients must evaluate but the cost of all drugs that must be taken with a regimen. ICER suggests that payers and drugmakers need to work together to find ways to discount all of the additional drugs that factor into the total cost of treatment.

Working together towards a solution. Great idea. It also goes on to state for payers that the idea of “fail first” or step therapy simply does not apply to myeloma treatment because patients will generally go through many to find out what works best for them.

In closing, the report concludes by saying that in the new world of “accountable care” a focus on trying to cut back the cost of specific drugs is not going to cut it. “The primary mechanisms for cost control should be focused on the entire spectrum of health care services, not solely drug costs for specific classes or certain patient populations.”

This statement is a step in the right direction for the types of conversations we need to be having.

Advocacy Spotlight: International Myeloma Foundation (IMF)

Founded in 1990, the International Myeloma Foundation (IMF) is the oldest and largest myeloma-specific charity in the world. With more than 350,000 members in 140 countries, the IMF serves myeloma patients, family members, and the medical community. The IMF provides a wide range of programs in the areas of Research, Education, Support, and Advocacy:

RESEARCH The signature project of the IMF’s Research division is the Black Swan Research Initiative®, a groundbreaking and collaborative effort to develop the first definitive cure for myeloma. Each year the IMF also awards Brian D. Novis Grants, which promote research for better treatments, management, and practices in the myeloma field. In addition, 200 leading myeloma researchers around the world comprise the IMF’s International Myeloma Working Group, a research body that has developed guidelines to treat myeloma patients that are followed around the world. Finally, the Nurse Leadership Board (NLB), made up of nurses from leading myeloma treatment centers, develops recommendations for the nursing care of myeloma patients.

EDUCATION The IMF Patient & Family Seminars, Medical Center Workshops, and Regional Community Workshops are held around the world. These meetings provide up-to-date information presented by leading myeloma specialists and researchers directly to myeloma patients and their families. The IMF Library of more than 100 publications, for patients and caregivers as well as for healthcare professionals, is updated annually and available free of charge. Publications are available in more than 20 languages.

SUPPORT Our toll-free InfoLine at 800-452-CURE (2873) is staffed by coordinators who answer questions and provide support and information via phone and email to thousands of families each year. The IMF sustains a network of more than 150 support groups and offers training for the hundreds of dedicated patients, caregivers, and nurses who volunteer to lead these groups in their communities.

ADVOCACY The IMF Advocacy program trains and supports concerned individuals to advocate on health issues that affect the myeloma community. Working in the US at both the state and federal level, the IMF leads two coalitions to advocate for parity in insurance coverage. The IMF Global Myeloma Action Network works to help gain treatment access for patients around the world. Thousands of IMF-trained advocates make a positive impact each year on issues critical to the myeloma community.

Anti-Theft Systems Threaten Cardiac Device Patients

The European Society of Cardiology is warning patients with cardiac devices about the hidden risks posed by electronic anti-theft systems.

Science Daily reports that state-of-the-art anti-theft systems can commonly be hidden by advertising, buried under floors, in walls or in doors. Consequently, patients might not be aware of the risks from prolonged exposure to electronic article surveillance (EAS) systems. Research shows that, although rare, the systems can cause pacing therapy to drop beats, leave pacemaker dependent patients with no heart beat, and cause ICDs to deliver inappropriate shocks

“Cardiac implantable electronic devices (CIEDs) are critical to patients’ health,” said co-author Dr Rod Gimbel, an electrophysiologist at Case Western Reserve University and co-author of research presented at CARDIOSTIM — EHRA EUROPACE 2016. “Pacemakers provide pacing support, without which there would be no heart beat at all for a pacemaker dependent patient. Implantable cardioverter defibrillators (ICDs) deliver pacing or shocks to rescue patients from potentially life threatening arrhythmias.”


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