- PIPC Briefing June 20: Value Frameworks in Health Care: The Real Story from Real Patients, see details below.
- PIPC Patient Blog: Tom Hardy Testifies for Access to Multiple Myeloma Treatments, click here to view blog.
- Daily Caller: Nonprofit’s Flawed Drug Pricing Calculations Could Mean Major Issues For Seniors, click here to view the article.
- Drug Rationing Plays Russian Roulette With Patients' Lives, click here to view the op-ed.
- Health Affairs Blog: Reimagining The Consumer Role In Improving Value, click here to view the article.
- PCORI Blog: Drawing on Mental Health ‘Experts-by-Experience’, click here to view the article.
- ACRO: Sharing for Better Caring: Breaking Down Silos to Advance Medical Research
On March 8, 2016, the Center for Medicare and Medicaid Services (CMS) proposed a new Part B Drug Payment Model. Among its provisions, the proposal calls for use of comparative effectiveness research (CER) and cost-effectiveness reports—such as those from the Institute for Clinical and Economic Review (ICER)—as the basis for national Medicare policy.
Patients and people with disabilities have long advocated for a patient-centered health system, fostered by policies such as patient-centered outcomes research and shared decision-making that achieve outcomes that matter to patients. By relying on “value” assessment tools intended to drive centralized coverage decisions, CMS is undermining value to patients and setting a precedent that will create substantial new barriers to patient access.
Join us on Monday, June 20 for an eye-opening congressional briefing that will explore patient perspectives on value frameworks. This unique briefing will feature a panel of patients and policy experts who will share their real-world perspectives on value-based policies, and examine the danger of CMS applying ICER or similar standards in national policy.
- When:Monday, June 20; 12:00 – 1:00 pm ET
- Where: Dirksen 608
- RSVP: Kindly RSVP to annika@PIPCpatients.org
Speakers at the briefing will include:
- Donna Cryer, President and CEO, Global Liver Institute
- Cat Davis Ahmed, Director of Outreach, Familial Hypercholesterolemia (FH) Foundation
- Andrew Sperling, Director of Federal Legislative Advocacy, National Alliance on Mental Illness
- Robin Tuohy, Senior Director of Support Groups, International Myeloma Foundation
2. PIPC Patient Blog: Tom Hardy Testifies for Access to Multiple Myeloma Treatments
In the latest edition of the PIPC Patient Blog, multiple myeloma patient Tom Hardy testifies in response to a public meeting in St. Louis by the Institute for Clinical and Economic Review (ICER) about his treatment journey and the potential impact of cost-effectiveness policies on patients. “As patients, we support each other and share our knowledge about our journey that truly helps us weather the storm. We have mourned those who have lost the battle and marveled at their courage and tenacity. This is what being human is all about, I have learned. It's about supporting one another during tough times and coming together to help and aid others as they come to our aid in times of need. Families, friends, co-workers, are all affected by a diagnosis of cancer, and besides taking so much away, it gives us the opportunity to come together and do what we do best: act cooperatively when danger threatens.” In describing his own experience, he stated, “All of this would not have been possible without the drugs and therapies that have only recently become available to me. I am extremely thankful to the doctors, advocates and scientists that work tirelessly to improve therapies and outcomes…I am appalled that a draconian cost-benefit efficacy analysis should inform any decisions regarding the ministration of the healing arts. Medicine advances and saves lives as much by art as by science, as much by heart as by numbers, as much by curiosity as by money. As a compassionate, civilized society, we must offer the best medicine we have to the patients who need it most without reservation. This is our legacy to generations to come.” Click here to view the blog post.
PIPC Chairman Tony Coelho responded to Mr. Hardy by stating, “It takes people like you to speak up for those patients who may not be able to. I am very grateful that you are working with the International Myeloma Foundation and hope that you continue to stay engaged so we are achieving value as patients define it.”
3. Daily Caller: Nonprofit’s Flawed Drug Pricing Calculations Could Mean Major Issues For Seniors
An article in Daily Caller highlights shortcomings with ICER’s examination of value. “A nonprofit the government is pushing to use to help calculate payments for seniors’ drugs under Medicare Part B may be using a flawed method, which could lead to patients being prescribed less effective and cost-friendly treatment plans. The Institute for Clinical and Economic Review (ICER) is a Boston-based nonprofit largely funded by health insurance companies, health trade associations and pharmacy benefit managers. It uses a model to calculate the value of drug prices similar to what is used in the United Kingdom. The drug payment model incorporates data using quality-adjusted life years (QALYs), a tool used for rationing health care by measuring disease burden. Experts say the issue with the tool is it fails to incorporate critical components like patient and doctor input… Advera Health Analytics, a California-based health-care informatics company, expressed its concern ICER’s framework. ‘ICER’s model presumes total spending on medicines should not grow in relation to other categories of health care spending even if medicines are producing the most significant advances for patients,’ Advera Health Analytics officials wrote in a letter to ICER’s President Steven Pearson. ‘As a result, ICER’s framework ignores the value of reallocating health care spending to care that improves patient outcomes or reduces hospitalizations or emergency room visits.’” Click here to view the article.
4. Drug Rationing Plays Russian Roulette With Patients' Lives
Stacey Worthy of the Alliance for the Adoption of Innovations in Medicine discussed ICER in a recent Morning Consult op-ed. “In addition to delays in care and restrictions on access to life-saving medications, ICER's rationing formulas lead to treatment that is inconsistent with medical standards of care. Insurers may impose overly restrictive medical necessity requirements on more costly treatments, such as with Hepatitis C. While we know newer Hepatitis C medications cure 90 percent of patients who take them, insurers are actually requiring patients to wait until their disease progresses to the point where they need a liver transplant before receiving the more expensive treatment.” Click here to view the op-ed.
5. Health Affairs Blog: Reimagining The Consumer Role In Improving Value
As detailed in an article last week in Health Affairs Blog, “By encouraging all providers to improve the quality of care offered and by using quality measures to remove low-quality providers we can nudge the health care system towards value. Focusing on metrics that are actionable by physicians, managers, purchasers, professional associations, and regulators mean that when they ratchet up quality, everyone benefits regardless of whether they were an uber-consumer or otherwise. Improving quality and moving to value should not be dependent on activating 300 million consumers to respond with their dollars and feet.” Click here to view the article.
6. PCORI Blog: Drawing on Mental Health "Experts-by-Experience"
As Dr. Andrew A. Nierenberg and Dr. Roberta Tovey commented last week onvThe PCORI Blog) comments “An estimated 43.6 million American adults—nearly one in five—have mental illness...Two leaders of MoodNetwork, one of the partner networks that make up PCORnet, the National Patient-Centered Clinical Research Network, know this issue well...We spoke with them about the research needed to improve treatment of mood disorders, and how patients and their families can contribute to this work.” Clickhere to view the article.
7. ACRO: Sharing for Better Caring: Breaking Down Silos to Advance Medical Research
Why is sharing medical data so important to curing diseases? Learn about HIPPA, Big Data, and how data sharing can help break down the barriers that are preventing medical breakthroughs. See ACRO's video here!