Thank you for allowing me to testify again today. I want to start by saying I appreciate that the commission chose not to vote today on a policy to use the quality-adjusted life year.
Based on the meeting last month, it is clear to me that this commission can learn much from the representatives of patients and people with disabilities here that are the real experts.
If the commission has not already reviewed the work on this issue from the National Council on Disability – an independent federal agency advising Congress and the Administration on disability policy issues – I would highly recommend doing that before voting.
As I mentioned last month, there are federal laws that bar health care discrimination.
When HHS first reviewed the Oregon waiver application in 1992, the waiver was rejected because of its use of quality-adjusted life years which would violate the Americans with Disabilities Act which had just passed in 1990.
As the original author of that law, I agreed with HHS.
Since then, the Affordable Care Act explicitly barred the use of QALYs in Medicare.
And more recently the Inflation Reduction Act included language barring the use of evidence that devalues patients and people with disabilities in its considerations about the value of prescription drugs.
It is settled law that QALYs cannot influence Medicare decisions and frankly I think - based on the 1992 decision from HHS - it is settled law that QALYs cannot influence Medicaid decisions.
With regard to your consideration of Option 1, I still do not understand the point of using QALYs as proposed.
When comparing treatments for the same population, comparative clinical effectiveness research measures clinical and other patient outcomes.
There is no need for QALY-based cost effectiveness analyses to understand the clinical impact of different treatments on the same condition.
I still maintain that Option 2 should be a non-starter.
There is no part of a study using the quality-adjusted life year that is not influenced by the discriminatory nature of that metric.
When quality-adjusted life years are used to build the base economic model, all other findings and assumptions in that report are based on that model – even if QALYs are not named in the other report sections.
You may be thinking about the metric called the equal value of life year gained that ICER includes in some of its value assessment reports.
But even as its supporters in the researcher community point out, the “evLYG measure has its own discriminatory implications.”
It fails to account for symptom and quality of life improvements and ignores key aspects of value that are important to patients, and that are important to different degrees for different patients.
It does not accurately capture quality of life for patients.
The same discriminatory evidence is factored into the evLYG – it is not a solution.
I am still surprised Option 2 is on the table.
Redacting mention of QALYs in a report only hides its consideration from the public eye.
For many years, I used Oregon as the example of a state that did not use QALYs only to find out later that the state was using them and doing it behind closed doors.
This is precisely what disability rights laws were written to prevent.
I am going to repeat what I said in October. I have epilepsy and I understand stigma. When I was young, my condition meant I could not get a job, the Catholic church thought I was possessed by the devil, and my parents stood by the church – not me.
The ADA was enacted to counter that 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.
I urge this commission to do the right thing and end its use of QALYs.
Thank you for allowing me to speak.