In a letter to Senators working to advance reauthorization of the Patient Centered Outcomes Research Institute (PCORI), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on a recent discussion draft of PCORI reauthorization. Chairman Coelho emphasized that this is a “crucial” time for Congress to build on the success of PCORI, noting that PIPC supports efforts to ensure that PCORI research is timely and responsive to the needs of those making decisions about new drugs and other treatment options. In addition to a fully funded reauthorization of PCORI for ten years, and Chairman Coelho offered suggestions pertaining to: (1) board composition; (2) methodology committee selection; (3) outcomes data; (4) high-impact research; and (5) enhancing statutes that protect PCORI’s patient-centered mission. “Now more than ever, we need solutions that are both evidence-based and patient-centered,” wrote Chairman Coelho. “The next 10 years of PCORI will be essential as the institute focuses on dissemination and implementation of its work."

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 Type 2 Diabetes Treatments. Chairman Coelho criticized ICER for omitting quality of life data deemed valuable by patients, pointing out that the institute continues to rely on faulty data in its assessments. The letter also condemns ICER for ignoring the heterogeneity of Type 2 Diabetes Patients in its report.  “ICER continues to use a flawed methodology, ignoring the reality of heterogeneous patient populations and quality of life outcomes that matter to patients in favor of data that easily crosswalks into the discriminatory QALY metric,” wrote Chairman Coelho. “We urge ICER to consider alternative methodologies that will foster improved health care decisions for individual patients.”

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 Cardiovascular disease (CVD). Chairman Coelho argued that there are several key flaws with ICER's report, noting that their model uses inappropriate data for the population being targeted with CVD medications. He also criticized ICER for using an "artificially narrow" definition of a major adverse cardiovascular event. "ICER continues to use a flawed methodology, ignoring real-world data and quality of life outcomes that matter to patients in favor of data that easily crosswalks into the discriminatory QALY metric," wrote Chairman Coelho. "We urge ICER to reconsider both its data sources and its concerning theory that health care must be rationed to achieve savings and efficiency in our health care system." 

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."