The Partnership to Improve Patient Care (PIPC) has joined CancerCare and cadre of leading advocacy organizations in a letter demonstrating widespread opposition to the use of third party value assessments, especially those relying on quality-adjusted-life-years (QALYs) and similar metrics, as the basis for denying or restricting access to care in the State of New York. The letter signed by over 40 organizations made it clear that patients and people with disabilities oppose one-size-fits-all definitions of value being used to create arbitrary thresholds in state healthcare systems, especially when they rely on discriminatory methods, such as the quality-adjusted-life-year (QALY).

In a letter to Senate Health, Education, Labor, and Pensions (HELP) Chairman Lamar Alexander, PIPC Chairman Tony Coelho outlined  several patient-centered policy approaches aimed at facilitating informed decision-making and reducing health care costs. Specifically, Chairman Coelho listed: (1) reauthorization of the Patient-Centered Outcomes Research Institute (PCORI); (2) avoiding the use of QALYs or similar value metrics; and (3) empowering patients to make informed health care decisions as avenues to pursue when considering policies to lower health care costs. "Health care stakeholders – ranging from patients, providers, and innovators – understand that a value-based health care system that truly supports advancements in personalized and individualized medicine must be built on a foundation of patient-centeredness," wrote Chairman Coelho. Patient-centered, evidence-based health care can lower overall spending by ensuring patients are able to receive timely treatment that is right for them, avoiding downstream costs, and improving patient outcomes." 

In a letter to the Institute for Clinical and Economic Review (ICER), the Partnership to Improve Patient Care (PIPC) offered suggestions to ICER on the development of new methods to guide value-based pricing of potential cures. The letter encourages ICER to acknowledge the long-term health benefits and cost savings resulting from curative therapies, and work with foreign collaborators to develop more patient-centered methods for value assessment that do not impede access. "While there is no single alternative method that succeeds on all domains at present, we are encouraged that several other organizations and approaches are underway in developing value assessment models that better reflect principles of patient-centeredness," wrote PIPC Chairman Tony Coelho. "We applaud ICER for recognizing the need to improve affordability for patients, and hope you take this opportunity to learn from the ongoing efforts of others to develop patient-centered methods for value assessment that incorporate a range of evidence to determine coverage and care decisions, and reject a single, one-size-fits-all measure of value."

In a comment letter to the Department of Defense (DoD), Partnership to Improve Patient Care (PIPC) offered feedback on the interim final rule concerning the TRICARE Pharmacy Benefit Programs. The letter encourages DoD to avoid adopting "one-size-fits-all" value metrics, and promote a TRICARE program that mitigates discrimination against people with disabilities and serious chronic conditions.“…We recommend the creation of an infrastructure for patient and beneficiary engagement in uniform formulary development under Tricare, to give members of the military and their families a voice in the determination of the value of treatments under the program, and throughout Tricare,” wrote PIPC Chairman Tony Coelho. “We also recommend the incorporation of incentives for health care providers to use shared decision-making tools and decision aids that will enhance the ability for patients and their physicians to assess the highest value treatment for that individual patient. In this way, Tricare can deliver on the intent of this program to deliver high value care by arming beneficiaries with information to improve health decisions instead of putting hurdles in front of the care they need.”

PIPC has partnered with Xcenda to quantify the extent to which ICER incorporates stakeholder input in its final assessments, particularly patients.  Upon review of submitted comments, and comparing those comments to ICER’s final value assessments, Xcenda was able to quantify that patient perspectives were half as likely to be incorporated than other stakeholders. The report published today by PIPC bolsters their argument that ICER needs to take steps to improve not only its process for engagement, but also its consideration of input received from patients. 

​More than 90 leading advocacy organizations representing patients, people with disabilities, physicians, and caregivers wrote a letter to CVS Caremark in opposition to a new policy that would discriminate against individuals with disabilities and chronic illnesses. 

In August, CVS announced that they would offer new insurance plans that exclude drugs 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. This type of cost effectiveness analysis discriminates against people with disabilities and other vulnerable groups like the elderly because it assigns higher value to people in “perfect health” than people in less-than-perfect health. ​As the letter states, "policy decisions based on cost-effectiveness ignore important differences among patients and instead rely on a single, one-size-fits-all assessment. Further, cost-effectiveness analysis discriminates against the chronically ill, the elderly and people with disabilities, using algorithms that calculate their lives as 'worth less' than people who are younger or non-disabled."

PIPC recently joined 50 leading organizations representing patients and people with disabilities in submitting a letter to the Centers for Medicare and Medicaid Innovation (CMMI) urging the agency to act on their statute’s call for alternative payment models to be evaluated based on patient-centeredness criteria. PIPC Chairman Tony Coelho emphasized that when it comes to payment model development, CMMI must engage patients early in their work to develop and implement new models. Specifically, the letter offers three concrete steps to establish the criteria called for by CMMI’s statute: (1) Establish the “patient-centeredness criteria” mandated under Section 1115A of the Affordable Care Act, which requires evaluation of alternative payment models (APMs) against patient-centeredness criteria; (2) convene patient and consumer advisory panels for each of the Innovation Center models under development as well as those currently being implemented; and (3) define “informed decision-making” as a core criterion of patient-centeredness and a goal of each alternative payment model.

In response to the Department of Health and Human Services (HHS) request for information (RFI) on the agency's Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs, PIPC has submitted a comment letter urging HHS to advance policies that emphasize the individual needs of patients. PIPC Chairman Tony Coelho encouraged HHS to make decisions that incorporate comparative clinical effectiveness research that works for patients to improve their health decisions, arguing for "informed healthcare that enables patients, doctors, and other health care professionals to choose the care that best meets the individual needs of the patient; and a health system that fosters continued medical innovation." The letter also includes four guiding principles for HHS to consider as they consider implementing new drug pricing policies, including: (1) avoid one-size-fits-all policies; (2) codify criteria for patient-centeredness across HHS programs; (3) convene patient advisory panels; and (4) focus on policies that advance informed healthcare.