In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on ICER's draft evidence report on treatments for Duchenne Muscular Dystrophy (DMD). Chairman Coelho offered criticism of ICER’s model for oversimplifying the disease, noting that ICER continues to overlook outcomes that matter to patients and caregivers. He also pointed out that ICER continues to use the flawed and discriminatory quality-adjusted-life-year (QALY) metric in its review. “ICER continues to overlook outcomes that matter to patients, families and caregivers in their haste to provide reports to payers,” wrote Chairman Coelho. “We encourage ICER to be more strategic and focus on producing complete and thoughtful analysis using high quality data incorporating a range of outcomes important to patients instead of rushing to complete reports that do not have appropriate scientific rigor."

​In a letter to the Institute for Clinical Economic Review (ICER), over 30 patient and disability groups joined the Partnership to Improve Patient Care (PIPC) in outlining concerns about ICER’s 2020 Value Assessment Framework. The letter calls on ICER to abandon its use of the quality-adjusted-life-years (QALY) metric, as well as other metrics that discriminate against patients and people with disabilities. PIPC also emphasized that ICER must develop novel measures of value to account for patient differences and priorities, as well as models that are open-source, transparent, and available to all patients and researchers. “Above all, we urge ICER to put patients and people with disabilities at the center of all of your assessments,” the letter states. “While we share your interest in lowering healthcare spending and addressing affordability, we do not believe that generating value assessments in a manner that leads to restricted access and discrimination is a necessary tactic or ethical strategy for achieving these goals.”

The Partnership to Improve Patient Care (PIPC) joined over 40 patient advocacy groups in signing onto the Alliance for Aging Research's comment letter to the Centers for Medicare and Medicaid Services (CMS) on the agency's proposed interoperability and patient access rule. While the letter commends CMS for acknowledging the importance of providers and patients being engaged in shared decision-making, advocates remain concerned that shared decision-making remains an unsupported and undefined concept within the agency. "To truly empower patients to 'effectively manage their own health, care, and costs'  will require the agency to prioritize implementation of the National Quality Partners Playbook: Shared Decision-Making in Healthcare (Playbook)," the letter states. "Moving forward, we hope that CMS will work with our organizations to advance shared decision-making fundamentals for healthcare organizations, establish a measurement framework for shared decision-making, and then implement the ‘Drivers of Change’ outlined by the Playbook."

In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on ICER's draft evidence report on treatments for peanut allergy. Chairman Coelho was critical of ICER for overlooking patient input and preferences in favor of the discriminatory quality-adjusted-life-years (QALY) metric, noting that the use of the QALY does not help patients with peanut allergies and their caregivers mitigate burden. He also noted that ICER's model does not account for the complexities of peanut allergy conditions. "ICER continues to use one-size-fits-all models and limited data that do not capture the complexities of different patient populations in their assessments of innovative medical products," wrote Chairman Coelho. "PIPC echoes the Asthma and Allergy Network, the Asthma and Allergy Foundation of America, and other patient advocacy groups that have implored ICER to acknowledge that patients are unique individuals with different preferences who respond differently to treatments."

​In a letter to the California Legislative Analyst’s Office (LAO), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on the LAO’s recent report entitled “The 2019-20 Budget: Analysis of the Carve Out of Medi-Cal Pharmacy Services From Managed Care.”  While PIPC shares concerns emphasized in the report about affordability of health care for patients and people with disabilities, Chairman Coelho recognized the implications of using of discriminatory cost-effectiveness analysis for preference of drugs and as reference for spending caps. He emphasized that these analyses ultimately employ discrimination and restricted access as a means to lower costs. “In the end, policies that prevent patients and people with disabilities from getting the right care at the right time based on their unique characteristics and priorities adversely impact health and increase costly adverse events such as hospitalizations,” wrote Chairman Coelho. “Therefore, we reject any approach that fails to consider the implications for discrimination and adverse health outcomes in its analysis of the formal use of cost-effectiveness analysis for preference of drugs in Medi-Cal and use of a drug spending cap, similar to the State of New York.”

In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on ICER's draft evidence report for Treatment-Resistant Depression (TRD). The letter offers criticism of ICER's model for inaccurately accounting for the cost burden of TRD, as well as ICER's misleading estimates on mortality rates associated with the disease. Chairman Coelho encouraged ICER to abandon discriminatory value assessment metrics such as the Quality-Adjusted-Life-Year (QALY), and instead focus on outcomes that truly matter to patients. "As the National Alliance on Mental Illness (NAMI) highlighted in its November comment letter to ICER, individuals with treatment resistant depression (TRD) are in desperate need of treatments that offer fast, effective relief," wrote Chairman Coelho. "The ICER model fails to capture the value of the treatment’s immediate impact. For patients, the ability to quickly get back to work and their families is invaluable.​"

In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho offered feedback on ICER's ​draft evidence report
on a treatment for Secondary Progressive Multiple Sclerosis (SPMS). The letter aligns with the National Multiple Sclerosis Society's position that ICER should discontinue the current review for siponimod due to the FDA approval for siponimod and the subsequent approval for cladribine, meaning that ICER’s scope of its draft evidence report is no longer sufficient. "ICER has once again missed the mark by showing callous disregard for patients," wrote Chairman Coelho. "Instead of working to engage with MS patients and taking their preferences and needs into consideration in evaluating a treatment designed for MS patients, ICER instead has chosen to rely on dated studies and mechanisms that are widely considered flawed."

The Partnership to Improve Patient Care (PIPC) submitted a comment letter to the Innovation and Value Initiative (IVI) on their first oncology-specific Open-Source Value Platform (OSVP) model focused on non-small cell lung cancer (NSCLC). PIPC Chairman Tony Coelho complimented the detail and comprehensiveness of the IVI's model, noting the tremendous value that open-source models offer. However, Chairman Coelho strongly encouraged IVI not to utilize the flawed quality-adjusted-life-year metric in its multi-criteria decision analysis (MCDA) component. "As QALYs are assigned by both quality as well as quantity of life, an incremental QALY assessment would prioritize providing treatment to a non-disabled population with a longer theoretical life expectancy, and otherwise perfect health, over a population with a disability or chronic condition," wrote Chairman Coelho. "It is our hope that IVI chooses to be innovative in moving beyond the QALY."

As detailed in a recent letter from PIPC, CancerCare, and over 40 other advocacy organizations, there is 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 makes 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).