On the recordFebruary 7, 2024
I begin first by expressing my support for the Protecting Health Care for All Patients Act and my appreciation to the leadership of Chairwoman McMorris Rodgers. This bill seeks to address a longstanding concern for the disability community, a community that I have spent the better part of the last 20 years working in and among. It bans the use of quality-adjusted life years, QALYs, measures from being used in Federal healthcare programs. As we know, QALY measures have devalued the lives of disabled and chronically ill patients when it comes to deciding if a certain treatment is cost effective, putting a dollar sign on their lives and barriers to accessing proper treatment. You heard a moment ago my colleague across the aisle refer to the bill in chief as dangerous. As the parent of a child living with epilepsy and on the autism spectrum, I can tell you what is dangerous is the way in which the healthcare system too often treats children and adults like her. It is neither progressive nor compassionate to put a dollar sign on the lives of those who need such life-affirming care. The use of QALYs has put those with chronic illnesses and disabilities, like epilepsy, ALS, and Down syndrome, at the back of the line for treatment, too often denying them access and creating barriers to the support they need. It undermines our commitment to life- affirming care for our most vulnerable.…
