State’s Pharmaceutical Proposal Puts Disabled People at Risk

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If you have read our response to Governor’s Cuomo’s 2019-2020 Budget you know that we thoroughly comb the budget to analyze every disability related policy we can find. However, occasionally one slips past us. This year we missed one appalling proposal from the Governor in a budget that was admittedly chock full of them. Hidden away in the Health and Mental Hygiene budget was a provision to authorize an independent body to use a method, QALYs (Quality Adjusted Life Years) that is built on disability discrimination to advise the state Drug Utilization Review Board to help determine the price the state is willing to pay for a number of vital medications. 

Why are QALYs so harmful to the Disability Community? At the very heart of the evaluation is the idea that disabled lives have less value. So medications that improve the lives of disabled people are devalued under it. In relation to the Drug Utilization Review Board this can mean that the state will restrict access to certain medications as a negotiating tool. These kinds of restrictions, which force people with disabilities to try other treatments before they’re allowed to access the one their doctors recommend, can put lives at risk. This is a dangerous way to practice medicine!

We accept that we live in a system where medical treatment is a commodity and cost must be controlled, but building disability discrimination into the very mechanism by which we control those costs only ensures that Disabled New Yorkers are the group most harmed by these cuts. Embedding discrimination in policies makes it harder to spot and harder to fight. It systematizes the mistreatment our community already faces at higher levels than the non-disabled community. Adopting QALYs tells disabled New Yorkers that the State does not feel they deserve the same level of health care as non-disabled New Yorkers. It will lead to disabled people dying so that the state can save money.

Fortunately there is hope in the Senate one house budget resolution, Senator Stewart-Cousins (the Senate Majority Leader) and Senator Rivera (the Senate health Chair) included language prohibiting the use of QALYs.  It is now vital that we back the Senate’s language and convince the assembly and the Governor to follow their lead. We believe that the budget must include language prohibiting any use of QALY assessments and believe strongly that access to medication should not be restricted in the name of cost-cutting. The Center for Disability Rights urges all New Yorkers to contact your legislators and the Governor’s office urging them to reject the use of QALY!  Disabled lives must not be put at risk by an evaluation system that sees us as less important!