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Senate of Pennsylvania
Session of 2019 - 2020 Regular Session


Posted: February 4, 2019 04:52 PM
From: Senator Andrew E. Dinniman
To: All Senate members
Subject: Right to Try for Terminally Ill Children

I will soon re-introduce last session’s SB 572, the “The bELIeve Act” (The Right to Try for Terminally Ill Children Act), legislation that calls for requiring insurance providers to cover potentially life-saving clinical trials and the related treatment for terminally ill children in Pennsylvania. Previous sponsors include Senators Fontana, Vulakovich, Mensch, Rafferty and Ward.

This bill stems from the work I have done with Paul B. Matthews of the Eli Seth Matthews Leukemia Foundation in Oxford, Chester County of my Senate District. I am calling this legislation the “bELIeve Act” in honor of Matthew’s late son, Eli, and his organization is already building the grassroots support needed to see it through.

Matthews, who started the foundation after losing his son, Eli, to childhood leukemia in 2011, contacted my office last fall when a 7-year-old boy from Oxford suffering from leukemia was denied access to a potentially life-saving trial drug by his family’s insurance provider because the treatment was out of network. Fortunately, in this case the denial was quickly appealed, and the treatment was covered. The young man was able to receive ground-breaking trial therapies at Cincinnati Children’s Hospital. While the young man initially responded well to the trial, sadly he eventually succumbed to the disease. However, the trial treatment allowed him several more precious months with his family and there’s no telling what contribution his participation made to cancer research and the development of a cure.

Still, any delay in appealing the providers’ initial decision can significantly jeopardize a terminally ill patient’s already-slim chances at recovery. The bottom line is no insurance company should deny a child, no matter how ill, access to potentially life-saving drugs, therapies, trials or related treatment.

Please join me in sponsoring The bELIeve Act and give every child a future

Introduced as SB307