Establishes program for familial dysautonomia, Canavan's and Tay-Sachs disease screening; authorizes department of health to provide grants

• Democratic3

◆ The sponsor's argument

Why Shelley Mayer says this is needed

Familial dysautonomia (FD), Canavan disease, and Tay-Sachs disease are serious, and oftentimes fatal inherited diseases. Those diagnosed with Tay-Sachs disease rarely live past the age of five (ten years with a Canavan disease diagnosis). While FD is not necessarily fatal anymore due to advances in medicine, medical care is often very involved and costly. At present, none of these diseases can be cured, but all have effective carrier screening tests that hopeful parents can take. An infant can only be afflicted with these diseases if both parents are carriers and pass along those genes. With the knowledge a test result can bring, hopeful parents can more comfortably enter their family plan- ning stage. These three diseases occur most often in children of Jewish extraction and of Eastern European origin. One in every thirty Ashkenazi Jews (those of Eastern European descent) is a carrier of the Tay-Sachs gene. Couples who are both carriers have a 25% chance of having a Tay- Sachs child. The estimated cost of caring for a Tay-Sachs child during their short life is estimated to be $50,000 to $150,000, while the emotional cost to the family of a Tay-Sachs child is immeasurable. Fami- lial dysautonomia stymies the development of autonomic and sensory nerv- ous systems which regulate the function of internal organs and transmit information from the body to the brain, allowing people to sense things such as pain, temperature, and changes in body position or muscle tension. It is estimated that 1 out of every 30 Ashkenazi Jews is a carrier of FD, and roughly 1 in every 3,600 children of Ashkenazi fami- lies is born with the disorder. Canavan disease is the most common degenerative cerebral disease of infancy and rapidly damages nerve cell growth in the brain. It is estimated that 1 in 40 Ashkenazi Jews are carriers of Canavan disease. Voluntary, confidential screening and counseling would be available for expecting parents and those looking to become parents under this program. Future parents deserve to know if there is a chance their child will die shortly after birth from a detectable disease. Preparing for a family is always challenging and this bill would help to provide more information regarding these diseases for those who need it.

This is the sponsor's own case for the bill, quoted from their memorandum. It is not Agora's description of what the bill does.