- PIPC Patient Blog: Tom Hardy Testifies for Access to Multiple Myeloma Treatments, click here to view blog.
- USA Today: Health Insurers Find Back Door to Limit Choice, click here to view the article.
- Morning Consult: Cost of Care or Value of Care? Ask the Patient, click here to view the article.
- New York Times: Proposal to Reduce Medicare Drug Payments Is Widely Criticized, click here to view the article.
- Video: Evaluating the Quality of Evidence Used for Developing Value Frameworks, click here to view the video.
- PCORI Board Approves $20 Million for New Patient-Centered Research on Breast Screening, Cerebral Palsy, Hepatitis C, and Stress Management, click here to view the press release.
- ASCO Value Task Force Takes Two Steps Towards Patients, Slaps ICER, Abacus, clickhere to view.
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.”
2. USA Today: Health Insurers Find Back Door to Limit Choice
In USA Today, Jeff Stier of the National Center for Public Policy Research writes about the burgeoning utilization of comparative effectiveness research to make coverage decisions. “Lost in the noise of political posturing over health care, there’s one widely accepted principle: the importance of the doctor-patient relationship in medical decision-making. Yet we’ve all heard stories where insurance companies won’t fully cover a drug that both the doctor and patient believe is the right medical choice. Why not? It’s pretty simple: the insurance companies don’t want to pay… To do so, they’ve cooked up a clever way to justify exclusions from formularies by founding and funding a group called the Institute for Clinical and Economic Review, or ICER. ICER does a version of something called ‘comparative effectiveness’ to determine whether, across the population, the drugs are worth the cost compared to other treatments. It releases the findings around the same time drugs come to market, just in time for insurance companies, who, not coincidentally, serve on ICER’s governing board, to justify excluding FDA approved drugs from the formulary based, in part, on ICER’s ‘independent’ math.”
“…ICER, which holds itself out as a kind of Consumer Reports for drugs, is basically an industry-backed comparative effectiveness calculator. That ICER is industry backed isn’t the problem, it’s that it uses comparative effectiveness to lend an air of legitimacy to the formulary shenanigans. Different people respond differently to medications. The blue pills don’t always work the same as the red pills. Individuals, it turns out, are different… So far, ICER hasn’t received the scrutiny it deserves. ICER’s controversial methods are being used to weigh which drugs we’ll have access to, and insurance companies have their thumbs on the scale.” Click here to view the article.
3. Morning Consult: Cost of Care or Value of Care? Ask the Patient.
Marc Boutin, CEO of the National Health Council, wrote last week about the Patient-Centered Value Model Rubric in Morning Consult. “If patient-perceived value is important in determining meaningful care, then why is the patient voice not front and center in the health care value debate? Various models and frameworks have recently been released to support physicians and payers in assessing the value of treatments. However, the patient community has expressed that it would like to see framework developers engage the patient community in a more meaningfully way. It is unclear if or how these cost-effectiveness models can capture the patient’s definition of value. Patient perspectives on value can differ significantly from that of payers and even their providers. It is much more than cost effectiveness based on a national average. Value also varies greatly within patient populations. It evolves with the disease trajectory and stage of a patient’s life, and is highly dependent on individual responses to specific therapies.”
“Value assessment, from the patient’s perspective, includes whether the treatment permits the individual to fulfill personal goals, such as a woman with multiple sclerosis to live longer to see a grandchild grow up or a man with Parkinson’s who wants to keep his condition concealed for fear of discrimination at work. The patient community brings to the value discussion perspectives that have been informed by their life experiences, level of expertise about their condition, and many other factors. The only way a value model can be of benefit to patients – the ultimate user of our health care system – is if people with chronic conditions are part of not only the model development process, but the value discussion in its entirety. Such action is particularly important if physicians and payers look to ‘value’ to inform decisions that can affect the treatment options available to a patient.” Click here to view the article.
4. New York Times: Proposal to Reduce Medicare Drug Payments Is Widely Criticized
New York Times’ Robert Pear writes about CMS’ oft criticized Part B drug payment proposal, which PIPC has panned for relying on “one-size-fits-all” methodologies to determine patient access to treatments. “An Obama administration proposal to reduce Medicare payments for many prescription drugs has run into sharp bipartisan criticism, suggesting that it is easier to diagnose the problem of high prices than to solve it. Patients’ advocates have joined doctors and drug companies in warning that the federal plan could jeopardize access to important medications. Every member of the Senate Finance Committee — 14 Republicans and 12 Democrats — and more than 300 House members have expressed concern… Bari Talente, executive vice president of the National Multiple Sclerosis Society, said her group opposed the administration’s plan in its current form. The National Alliance on Mental Illness, an advocacy group for patients, said the proposal ‘could limit access to long-acting injectable antipsychotic medications’ used to treat schizophrenia and other disorders. In a letter to Medicare officials, Dr. Laurie H. Glimcher, dean of Weill Cornell Medical College in New York, said, ‘This experiment puts the care of patients at unnecessary risk.’” Click here to view the article.
5. Video: Evaluating the Quality of Evidence Used for Developing Value Frameworks
As innovation continues to boom in the oncology market, Bruce A. Feinberg, DO; Alan Balch, PhD; and Michael Kolodziej, MD, discuss unmet needs when measuring a drug’s value in a video for the American Journal of Managed Care. The panelists also describe the potential effectiveness of patient feedback when determining a product’s value in the market. As Dr. Kolodziej explains, “we have, now, are these efforts by ASCO [American Society of Clinical Oncology], and NCCN [National Comprehensive Cancer Network], and ICER [Institute for Clinical and Economic Review]... They don't have all of the right inputs, and I'm sure we're going to get into that. It's a work in progress, and they have used the tools that are currently available to them to try to build a model so that we can have an honest discussion about health technology assessment.” Click hereto view the video.
6. PCORI Board Approves $20 Million for New Patient-Centered Research on Breast Screening, Cerebral Palsy, Hepatitis C, and Stress Management
According to a press release last week, “The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved more than $20 million to fund four new patient-centered comparative clinical effectiveness research (CER) studies...The four projects approved for funding today will support research on which care options might work best in treating a range of conditions and problems that impose high burdens on patients, caregivers, and the healthcare system.” Click here to view the press release.
7. ASCO Value Task Force Takes Two Steps Towards Patients, Slaps ICER, Abacus
Robert Goldberg of DrugWonks.com commented last week on ASCO’s newly-released cancer value framework. “In sum, the ASCO value framework is an improvement over its first version. It is more patient-centered and less a tool for policy making and political attacks. As a recent comparison of the ICER and ASCO frameworks concluded: ‘Substantial drug price reductions may be necessary in order to meet ICER thresholds even when maximum NHBs are present as assessed within the ASCO framework.’ In that important regard, it is a better value framework than those developed by ICER and Peter Bach.” Click here to view the article.