As detailed in a recent letter from PIPC, CancerCare, and over 40 other advocacy organizations, there is 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. The letter makes clear that patients and people with disabilities oppose one-size-fits-all definitions of value being used to create arbitrary thresholds in state healthcare systems, especially when they rely on discriminatory methods, such as the quality-adjusted-life-year (QALY).
First, some good news: When the New York Senate Budget bill was recently released, it reflects that our voices are being heard. While continuing to authorize the use of cost effectiveness studies, it does not allow for use of assessments that "utilize a measure that discounts the value of a life because of an individual’s disability or age…”. Additionally, it seeks to eliminate use of biased assessments by not allowing a third party supplying information to receive funding from the pharmaceutical industry or health insurance industry. And lastly, any assessment relied upon must be made available to the public, including methodologies and models, disclose assumptions made, and present results in a manner reflecting differential outcomes for subpopulations.
Now, the bad news. Unfortunately, the New York Assembly included a provision in their budget proposal similar to the provision we opposed in our letter. The Assembly bill does not preclude the use of a discriminatory metric for determining the value of treatments, and while referencing quality of life, does not require its assessment through diagnosis or domain-specific measures. As drafted, the language would allow for the use of a QALY which measures disabled life as worth less than non-disabled, particularly would allow for use of cost-per-QALY assessments of value conducted by the Institute for Clinical Economic Review (ICER).
The Executive budget and Assembly budget further entrench the profoundly damaging dynamic whereby New York Medicaid will restrict access for people with disabilities and chronic illness as a negotiating strategy for determining what the program will cover and pay for, putting patients and people with disabilities in the middle of the debate on health care costs.
Therefore, we need your help to convey to New York legislators that the Senate budget language is preferred, and that the Executive budget and Assembly budget language is detrimental to our communities.
Below is a draft that we encourage you to personalize:
Now, the bad news. Unfortunately, the New York Assembly included a provision in their budget proposal similar to the provision we opposed in our letter. The Assembly bill does not preclude the use of a discriminatory metric for determining the value of treatments, and while referencing quality of life, does not require its assessment through diagnosis or domain-specific measures. As drafted, the language would allow for the use of a QALY which measures disabled life as worth less than non-disabled, particularly would allow for use of cost-per-QALY assessments of value conducted by the Institute for Clinical Economic Review (ICER).
The Executive budget and Assembly budget further entrench the profoundly damaging dynamic whereby New York Medicaid will restrict access for people with disabilities and chronic illness as a negotiating strategy for determining what the program will cover and pay for, putting patients and people with disabilities in the middle of the debate on health care costs.
Therefore, we need your help to convey to New York legislators that the Senate budget language is preferred, and that the Executive budget and Assembly budget language is detrimental to our communities.
Below is a draft that we encourage you to personalize:
I am writing to express support for language in the Senate budget reflecting the concerns expressed in a letter signed by 45 organizations and individuals that oppose 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.
The New York Senate budget bill reflects that our voices were heard. As drafted, it does not allow the state to rely on assessments that "utilize a measure that discounts the value of a life because of an individual’s disability or age…”. Additionally, it seeks to eliminate use of biased assessments and requires that assessment relied upon must be public, transparent and reflect differential outcomes for subpopulations.
Unfortunately, the New York Assembly included a provision in their budget proposal similar to the provision we opposed in our letter. The Assembly bill does not preclude the use of a discriminatory metric for determining the value of treatments and would allow for the use of a QALY.
Please know we prefer the Senate language and appreciate the Senate’s attention to our concerns. We oppose the Executive budget and Assembly budget language that would further entrench the profoundly damaging dynamic whereby New York Medicaid would restrict access for people with disabilities and chronic illness as a negotiating strategy for determining what the program will cover and pay for.
Key Contacts:
- Carl Heastie, Speaker of the Assembly, (518) 455-3791, Speaker@nyassembly.gov
- Andrea Stewart-Cousins, Senate Majority Leader, (518) 455-2585, scousins@nysenate.gov
- Crystal Peoples-Stokes, Assembly Majority Leader, (518) 455-5005, PeopleC@nyassembly.gov
- John Flanagan, Senate Minority Leader, (518) 455-2071, flanagan@nysenate.gov
- Michael Gianaris, Senate Deputy Majority Leader, (518) 455-3486, gianaris@nysenate.gov
- Gustavo Rivera, Chair Senate Health Committee Chairman, (518) 455-3395, grivera@nysenate.gov
- Richard N. Gottfried, Chair Assembly Health Committee, 518-455-4941, GottfriedR@nyassembly.gov
- Monica Miller, NY Assembly Health staff, millerm@nyassembly.gov