Establishes the rare disease advisory council

• Democratic23
• Republican17

◆ The sponsor's argument

Why Roxanne J. Persaud says this is needed

This act therefore establishes a standing rare disease advisory council in New York to advise and consult on policy matters related to rare diseases. It defines the number and makeup of the body of council members and the scope of responsibilities for members. A rare disease is defined by the federal Orphan Drug Act as a medical condition affecting fewer than 200,000 people in the United States. According to the National Institutes of Health there are over 10,000 currently known rare diseases affecting over 30 million Americans, 90% of which lack an FDA approved treatment. Further, the National Organiza- tion of Rare Disorders (NORD) reports it can take someone with a rare disease an average of 6 years to receive a diagnosis. While most rare diseases lack effective treatment, care for those affected can cost over 400 billion dollars annually according to the NIH/National Center for Advancing Transitional Sciences project. In addition to serious health problems, those with rare diseases and their families often experience significant physical and mental impacts on the rest of their lives. These impacts can lead to isolation, worsening disease symptoms, and a significantly lowered quality of life. While New Yorkers with rare diseases benefit from state supported services like newborn screening, mandated coverage of medical nutrition and prescription cost sharing protections, there remain many unmet needs. Addressing these needs requires a focused, sustained effort and in 2019, as an important first step, New York created a temporary rare disease working group which sunset in 2024. The creation of a permanent New York State Rare Disease Advisory Council (RDAC) is the critical next step to help bring greater care, support, and hope for those with rare diseases, their families and caregivers. Rare Disease Advisory Councils currently serve 29 other states by connecting patients, caregivers, and other healthcare experts and fostering collaboration to improve the development and exchange of know- ledge and best practices that improve the lives of those with rare diseases. This can range from helping to create databases on research, treatments, and treatment providers to helping develop public policies and support services which enable people with rare diseases to live healthier lives. Because a RDAC isn't temporary, it can provide a foun- dation for promoting work essential to supporting advances in science and technology, as well as the development of resources to help meet the needs of patients and their caregivers.

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.