State Action Center

Opportunities to advocate on this issue are happening daily and we encourage groups and individuals to support the fight against these discriminatory practices. Provided below are resources to help you stay informed on ongoing state issues and events.

Legislative Template for State-Based Legislation: Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities

Value Our Health calls on state legislators to protect patients and people with disabilities from policies that would reference discriminatory cost effectiveness analyses based on QALYs and similar metrics, or that would use QALY-based analyses as leverage to reduce government spending by limiting access through the use of step therapy, prior authorization, cost-sharing designs, and tiered formularies. Consideration of research and analysis for Medicaid policies impacting coverage, reimbursement and incentive programs should be transparent to the public and deliberated with input from patients and people with disabilities. Click here to view a template for state legislation protecting patients and people with disabilities from discrimination.

California News and Updates:

PIPC letter to LAO

Connecticut News and Updates

CT bill (HB 7174): Calls for maintaining a list of “cost effective” drugs in Section 1(b)(3)

Massachusetts News and Updates:

Statement on Health Policy Commission Regulation to Value Prescription Drugs

Groups representing patients and people with disabilities submitted written testimony to the Commonwealth of Massachusetts related to their consideration of the “value” of medications

Here’s why Sarah Palin’s ‘death panels’ are now being debated in Massachusetts

Statement by Massachusetts Disability Organizations re: QALYs and Prescription Drugs

Susan Linn, Epilepsy Foundation New England: Don’t put a price cap on people’s lives

New York News and Updates:

New York’s Embrace of Discriminatory Value Assessments is a Call to Action!

Not Dead Yet Demands Prohibition On Use of QALYs To Limit Health Coverage

Center for Disability Rights: State’s Pharmaceutical Proposal Puts Disabled People at Risk

Chairman’s Corner: New York’s Embrace of Discriminatory Value Assessments is a Call to Action!

CancerCare and Stakeholder Letter to NY Legislators Opposing QALYs and Similar Metrics

Center for Disability Rights statement

Tennessee News and Updates:

Sue Peschin, Alliance for Aging Research, writes for the Tennessean: Discrimination Has No Place in American Prescription Drug Coverage

Tennessee 1115 Waiver Application Deadline is December 27, 2019! Click here to submit comments to CMS

Tennessee 1115 Waiver Application – see page 15 for references to limiting drug coverage to those deemed “cost effective”

Americans Agree: QALYs Have No Place in U.S. Healthcare

Twenty groups representing patients and people with disabilities submitted comments to the Centers for Medicare & Medicaid Services 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. Read the entire letter here.

Resources

Americans Agree: QALYs Have No Place in U.S. Health Care

ICER’s SMA Assessment Contains Alarming Flaws

The Consortium FOR Citizens with Disabilities (CCD) Opposes Use of QALYs