TRENTON – The Senate today gave approval to a bill sponsored by Senator Vin Gopal that would establish the New Jersey Rare Disease Advisory Council in the Department of Health. The new council would consist of 20 members and be charged with advising the Legislature, State departments, agencies, commissions, and authorities, and private agencies tasked with providing services for persons diagnosed with a rare disease.
A rare disease is defined as a disease that affects fewer than 20,000 people. There are roughly 7,000 known rare diseases, sometimes known as orphan diseases, affecting approximately 25 to 30 million Americans. The exact cause for many rare diseases remains unknown. However, 80 percent of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes which can be passed down from generation to generation.
“Given the devastation brought on by the coronavirus pandemic, we should use this event as a wake-up call for us to better understand and treat rare diseases. While the COVID-19 crisis has shown to have horrific outcomes for millions of people, it has been especially hard on those who live with rare diseases, who are immunosuppressed and have respiratory and neurologic issues that make them particularly vulnerable,” said Senator Gopal, (D-Monmouth).
A person suffering with a rare disease faces a wide range of challenges, including delays in obtaining a diagnosis; being misdiagnosed; shortages of medical specialists who can provide treatment for rare diseases; and the lack of therapies and medication that are used by doctors to treat rare diseases.
“Someone who is diagnosed with a rare disease shouldn’t have to jump through hoops to receive proper medical treatment. With the creation of an advisory council, we will develop policy recommendations and best practices to share with state decision-makers that can improve the lives of those in the rare disease community,” said Assemblyman Ronald Dancer (R-Burlington/Middlesex/Monmouth/Ocean), prime sponsor of a companion bill, A-4016, in the General Assembly. “This council would help state departments and agencies assist those affected by a rare disease with critical and possibly life-saving information.”
Membership of the advisory council would consist of various state commissioners and officials, including two members from the Senate, two members from the General Assembly, and 12 public members appointed by the Governor.
The bill, S-2682, was released from the Senate by a vote of 37-0.