State Advocates: Track Potential Discriminatory Policies in Your State
Concerningly more and more states are looking to policies that rely on the discriminatory QALY and assessments conducted by the Institute for Clinical and Economic Review (ICER), which calls the QALY the gold standard, to determine coverage and reimbursement. States move quickly in their policy making and their processes are often opaque. Patientaccessproject.org comprehensively tracks states’ regulatory and legislative activity for policies that rely on the QALY or other discriminatory metrics either directly or through referencing ICER.
Visit www.patientaccessproject.org and make sure patients and people with disabilities are able to access the care they need in your state!
Visit www.patientaccessproject.org and make sure patients and people with disabilities are able to access the care they need in your state!
Oregon
- Oregon Advocates Comment Opposes Options to Use QALYs by HERC: On November 1, 2022, letters (option 1; option 2) with 36 signatures were provided to the Oregon Health Evidence Review Commission (HERC) related to its proposed guide for use of quality-adjusted life years (QALYs) in HERC’s meeting materials, processes and decisions, particularly related to the prioritized list of services for coverage under Medicaid.
- Chairman's Corner: Chairman Coelho Testifies in Oregon Against Use of QALYs: Chairman Coelho testified in November, 2022 that the ADA was enacted to counter bias and stigma for future generations. Combined with other disability rights laws, there is no question that metrics like QALYs are not fit for use in our health system.
- Health Advocates Press HERC to Discontinue Using QALYs in Oregon, 2022: Advocates in Oregon joined a letter to the Health Evidence Review Commission (HERC) related to their review of proposed policy options to guide the Commission's use of quality-adjusted life years (QALYs) in meeting materials and decision-making.
- PIPC Joins Over 60 Organizations Urging CMS to Reject QALY's in OR Waiver Renewal Application, 2022: The Partnership to Improve Patient Care (PIPC), along with 62 leading advocacy groups representing patients and people with disabilities, submitted a comment letter to the Centers for Medicare and Medicaid Services (CMS) on Oregon's 1115(a) Demonstration Waiver renewable application.
- PIPC Chairman Coelho Testifies to Oregon HERC that QALYs are Contrary to the ADA: On October 6, 2022, PIPC Chair Tony Coelho testified in response to the Oregon Health Evidence Review Committee's proposed options for continuing its use of the discriminatory quality-adjusted-life-years metric.
California
- California advocates sent a letter to the California Health Care Foundation in 2022 expressing concerns about a new grant to ICER and highlighting its use of discriminatory metrics. https://www.cfri.org/wp-content/uploads/2022/07/Co-Signed-Letter-to-CHCF-Re-ICER-Grant.pdf
- California advocates sent a letter to Attorney General Bonta in 2022 urging urge the office to investigate the biased and discriminatory methods inherent in value assessments driving coverage decisions and benefit design, and to work toward identifying higher standards for the evidence used to make decisions. https://www.cfri.org/wp-content/uploads/2022/10/CA-Letter-to-AG-Bonta-10312022-1.pdf
- Don’t Let Payer Investments in QALYs Undermine California’s Health Equity Goals: California’s diversity is among its greatest strengths, yet ICER has been strongly critiqued for its reliance on average metrics that fail to represent diverse populations. ICER touts how its value assessments can be leveraged to reduce costs, but in reality, its value assessments developed for use by payers will benefit payers at the expense of access to care for patients and people with disabilities — not their benefit. http://www.pipcpatients.org/blog/chairmans-corner-dont-let-payer-investments-in-qalys-undermine-californias-health-equity-goals
New York
- New York’s Embrace of Discriminatory Value Assessments is a Call to Action! A letter led by CancerCare in 2019 with 45 signatures showed 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.
Massachusetts
- Massachusetts advocates sent a letter in 2019 expressing concern about the Governor’s budget proposal and urging the state to avoid the use of QALYs and similar metrics.
- Massachusetts advocates sent a letter in 2019 to the Health Policy Commission about its consideration of the “value” of medications urging it to avoid the use of the discriminatory metrics and allow patients and people with disabilities to have a seat at the table through its process.
- Massachusetts advocates released a statement in 2020 on the Health Policy Commission’s regulations outlining their approach to assessing the value of prescription drugs. The groups stated that HPC’s regulations put patient access at risk and may ultimately do more harm than good for patients.
- Massachusetts advocates released a statement in 2021 lauding legislators for introducing a broad patient protections bill that included a QALY ban.
Tennessee
- PIPC Joins Leading Patient Groups in Comment Letter on TennCare II Demonstration 2020: Twenty groups representing patients and people with disabilities submitted a comment letter to the Centers for Medicare & Medicaid Services (CMS) in response to Tennessee’s proposed amendment to the TennCare Demonstration, TennCare II Demonstration, Amendment 42. The groups expressed concern that adopting a closed formulary opens the door to evaluating the “value” of a drug using cost-effectiveness analyses based on the discriminatory quality-adjusted life year, which would lead to limited access to needed treatments for patients and people with disabilities. "Our goal is for TennCare to be centered on the needs, outcomes, and priorities of patients and people with disabilities; therefore, we oppose opening the door in Tennessee to limited formularies and the use of cost-effectiveness analyses based on the QALY and similar metrics, which would lead to discrimination and restricted access to care," the letter states.