On April 14, 2023, 56 organizations representing patients and people with disabilities sent a letter to CMS related to its guidance for implementation of the Medicare Drug Negotiation Program. The letter to CMS provides the following recommendations and comments:

As healthcare costs in the United States have continued to grow, there has been an increasing desire to move towards “value-based” care in which patients and payers would be paying for the “value” of the treatment patients receive. This idea has been gaining particular momentum as policymakers look for strategies to curtail spending on pharmaceuticals. While there is merit in paying for services and treatments that work and eliminating wasteful spending, it is important to step back and consider to whom “value” is being provided. As the ultimate beneficiary, we would advocate that the measure of “value” in a healthcare setting should focus on value to the patient, but currently, we are concerned that the trend is to look towards “value” to the payer by prioritizing reduced cost over care outcomes for patients in the form of cost-effectiveness analyses. 

​The Partnership to Improve Patient Care (PIPC) has released a public opinion poll by Morning Consult regarding the use of cost-effectiveness assessments to determine value of coverage and treatment costs. The survey demonstrates that voters resoundingly reject the main tenets of cost-effectiveness analyses with 82 percent of American voters objecting to their use in determining health care coverage and reimbursement decisions. These types of measures, which are often used outside of the U.S. to limit patient access to medicines, have been frequently criticized as discriminatory by patients and persons with disabilities. Increasingly, policymakers and payers have proposed to use these same tools to limit coverage for Medicare and Medicaid beneficiaries.  

Click here to view a blog post on the poll by PIPC Chairman Tony Coelho. 

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).

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. 

Value assessment in general, and the use of cost-effectiveness in particular, is receiving renewed interest as a tool for controlling health care spending. Currently, the most common method for determining incremental cost-effectiveness of healthcare interventions is based on a calculation of quality-adjusted-life-years (QALYs). While the model has a basic appeal for making population-level decisions (by reducing patient populations to single, aggregate numeric values), it also poses several significant concerns from the vantage point of patient-centeredness and efforts to preserve access to needed care for individual patients and people with disabilities.  Of particular concern to me are the implications of use of QALYs for discrimination against people with disabilities, and its conflicting goals from the goals of personalized medicine.

​Value frameworks and similar value assessment tools are playing an increasingly prominent role in health care as insurance companies, Medicare, state agencies, and other stakeholders all are working rapidly toward "value-based" payment models. But will they pay for care that patients value? The Partnership to Improve Patient Care (PIPC) was founded on principles of patient-centeredness that cannot be achieved without engaging patients and people with disabilities. For the transition to a value-based health system to achieve outcomes that matter to patients, patients must have a seat at the table in defining value through the development of the value frameworks and tools.

Today, Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho sent a letter to the Department of Health and Human Services (HHS) expressing concerns with a proposed extension of Oregon's Medicaid Health Plan Extension.  Currently, Oregon has a unique waiver from “EPSDT” – a foundational principle of Medicaid that makes health care for children a national priority, and specifically requires coverage of “all medically necessary diagnostic and treatment services." The system underlying the Oregon Health Plan is a prioritized list of services, that uses quality-adjusted life-years (QALYs) to help rank treatments in order of importance.  High ranked treatments are funded; low ranked treatments are automatically denied regardless of medical necessity. 

The Partnership to Improve Patient Care (PIPC) and over 40 organizations representing patients, people with disabilities and providers submitted a letter to the Institute for Clinical and Economic Review (ICER) in response to their request for input on their value assessment process.  In the letter, the organizations stated, “Simply put, if we aren’t paying for care that patients’ value, we aren’t really paying for value-based care.”

The Partnership to Improve Patient Care (PIPC) has compiled a list of patient-centered resources that policymakers can and should be using to inform their development of public policy.  Groups representing patients and people with disabilities know the populations they serve better than anyone, and that patients and people with disabilities bring credible and insightful data to the table.  This list of the resources should be utilized by policymakers to inform the development and implementation of new payment models, quality measures and shared decision-making tools.  Moreover, this work should facilitate facilitate more direct engagement of patients and people with disabilities in policymaking. 
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This list of resources will continue to be updated as information is compiled. Click here to fill out the survey.