Recently, the Institute for Clinical Economic Review (ICER) announced that their future reports will incorporate more prominently “a calculation of the Equal Value of Life Years Gained (evLYG).” For over a decade, representatives of patients and people with disabilities have communicated to ICER that QALYs are fundamentally flawed and inherently discriminatory. The QALY was developed as a tool to make one-size-fits-all decisions, not facilitate patient-centered health care.
PIPC Chairman Tony Coelho has penned a new blog in Real Clear Health that criticizes CVS Caremark’s use of the quality-adjusted life year (QALY) metric when deciding treatment coverage. “CVS touted its program as an ‘innovation,’ but it is anything but. Under the new policy, CVS would offer employers policies that exclude drugs from their formularies if they exceed a subjective ‘cost-effectiveness’ threshold. CVS would rely on a deeply flawed value assessment model developed by the Institute for Clinical and Economic Review (ICER) in determining whether treatments fall below a $100,000 ‘cost per quality-adjusted-life-year’ limit. Patient advocates have been down this road before. In the early 1990’s Oregon proposed using a similar ‘cost-effectiveness’ formula in Medicaid, but ultimately backed away from it in part due to concern that it discriminated against people with disabilities and would violate the Americans with Disabilities Act.”
 In an op-ed for The Hill, PIPC Chairman Tony Coelho outlined his concerns with MedPAC’s pursuit of cost-effective analysis to make coverage and reimbursement decisions. As he writes, "As policymakers encourage a transition towards value-based health care, I worry that more focus is being given to what is most cost-effective for the “average patient” than creating a system that works for each individual patient. I am not average. You are not average. We are the reason a health-care system exists — our health and well-being, our treatment, our recovery."
 As Chairman of the Partnership to Improve Patient Care (PIPC), I have seen tremendous progress in the patient-centeredness movement, particularly in changing the culture of medical research. Yet, our leaders should know that we still have a long way to go to give patients, people with disabilities, veterans and caregivers a voice in how we deliver care that patients value. They deserve a seat at the table in any discussion of health care policy, as well as meaningful opportunities to voice their unique and real experiences
 In an op-ed published in RealClearHealth, PIPC Chairman Tony Coelho examines the limitations of quality-adjusted-life-years (QALYs) and how this tools for value-assessment may systematically discriminate against patients and individuals with disabilities. As he writes, "Underlying all this is the key question we must ask ourselves when considering any policy related to the payment and delivery of health care: for whom are we creating this policy? Who is the ultimate stakeholder? If the answer is not the people served by health systems -- patients and people with disabilities -- then we have a serious problem."
 PIPC Chairman Tony Coelho recently penned a blog for HuffPost, complimenting steps that are being taken that show progress in shifting toward value-based healthcare decisions. “While a tremendous amount of work remains to be done, policymakers took two steps recently that show progress is possible. One was approval by the Senate Finance Committee of the CHRONIC Care Act, a bipartisan bill (yes, they still exist!) whose success is attributable to significant stakeholder engagement and that, if enacted, will help to meet real patient needs.”
 On April 19, 2017, I provided comments to the Centers for Medicare and Medicaid Innovation (CMMI) on behalf of the Partnership to Improve Patient Care (PIPC) related to some new, recently proposed episode payment models. I applauded the agency for making a deliberate and conscious effort to solicit authentic patient feedback about their proposed new payment models. Although I’ve been critical in the past, I told them that I appreciated their seizing of this opportunity to forge a new path forward on engaging stakeholders, particularly patients, in the development, implementation and evaluation of alternative payment models.
 In a blog published by The Huffington Post, Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho urged members of the new Congress and new administration to listen to real patients and embrace health care solutions for that cater to all patients, caregivers and people with disabilities. "Patients wanted a voice in research and in health care policymaking, because, too often, traditional research is irrelevant to the goals we have for our health and our lives," Coelho wrote. Coehlo also noted that while Congress continues to focus on improving the "value" of healthcare, it is crucial for patients to have a voice in defining this value in their healthcare plans.
As PIPC continues to play an active role in building a patient-centered healthcare system, we’ve been intensely focused on ensuring that the transition to a value-based health system is built on the foundation of achieving outcomes that truly matter to patients. That’s why PIPC was encouraged when the Center for Medicare and Medicaid Innovation (CMMI) recently announced two models designed to increase patient engagement in care, as well as increase shared decision-making about care and treatment.
Catherine Rampell’s Dec. 2 op-ed, “Keep this part of Obamacare,” told half the story. Yes, the Medicare “Innovation Center” created under Obamacare appears to be doing some good work. But it also is in serious need of changes to protect patients. The Innovation Center created significant (if unintended) risks with some models that patients identified as going too far and driving “one-size-fits-all” care in stark contradiction of the nation’s drive to develop targeted therapies under the Precision Medicine Initiative and Cancer Moonshot.
Over the last few years, I’ve been very outspoken on the need to engage patients and people with disabilities in efforts to define the value of health care. Engagement has become my ministry because, frankly, what we often find is “token” engagement - a pat on the head, with no real impact on policy development and implementation. I thought we were making real progress on engagement in this administration. It seems I was wrong.
What's the most important question facing any patient with a life-threatening illness?
"Which treatment option is best for me?" By most accounts, this is a good problem to have; giving patients a range of treatment options, and the ability to make an informed choice about the regimen that most directly aligns with their personal health priorities is fundamental to high-quality, individualized health care. But along with these new methods for treatment come difficult questions. Do I want the more aggressive or conservative therapy? Is my quality of life during treatment more important than returning to work quickly? Which course of action has more tolerable side effects? Can I afford the care I need? Many people want to quantify “value” in health care. But for the ultimate beneficiary, the patient, value is more personal. That doesn’t mean we can’t get better value, it just requires us to find ways that respect patients and their diverse care needs and preferences. This was the big message I took away from a roundtable recently convened by the Partnership to Improve Patient Care (PIPC) and the Cancer Support Community (CSC) with many leading organizations representing cancer patients.
After five years of progress towards patient-centered comparative effectiveness research (CER), the Center for American Progress (CAP) threatens to unwind it by reviving the old debate over using CER to control medical spending. Proposals for Medicare and private payers to use CER are understandable, but concerning. Understandable because the challenge of rising costs is real, and policy-makers naturally reach for familiar policy tools. Concerning because it would pull CER away from individualized patient decisions and back towards centralized payer decisions. The end result would be limited choice of treatments based on one-size-fits-all determinations of “value” for the average patient.
There’s a lot of talk right now about moving health care towards value-based payment models. But will these new models reward care that patients actually value? Maybe. It depends, first and foremost, on bringing patients into the conversation and giving them a meaningful voice.
The Affordable Care Act embraced important patient-centered principles, through the creation of the Patient-Centered Outcomes Research Institute (PCORI), and its embrace of concepts like shared decision-making in health care. The shift from a payment system based on quantity to quality could be promising – depending on how we define quality. But if the healthcare system of the future is to achieve outcomes that matter to patients, it must systematically engage patients in their own healthcare decision-making and in governance. Without this sustained commitment, the enterprise will too easily slip to one that merely rewards providers for achieving cost containment through fewer treatment or service choices for patients. |