Panel Approves Kean Bill Creating Advisory Council to Protect Patients of Rare Diseases

Medical Conditions Can Increase Vulnerability to COVID

There are more than 7,000 relatively unknown and difficult to diagnose rare diseases, and there is growing concern that many of these relatively unknown illnesses can make victims more susceptible to the coronavirus.

Legislation (S-2682) sponsored by Senate Republican Leader Tom Kean and approved today by the Senate Health, Human Services and Senior Citizens Committee would ensure those suffering from unusual conditions receive suitable care by establishing the New Jersey Rare Disease Advisory Council.

“The ongoing pandemic makes it more vital than ever to help those who are impacted by rare illnesses that are often difficult to diagnose and treat,” said Kean (R-21). “Genetic mutations are responsible for causing many of these ailments that can be passed down through generations, often resulting in suppressed immune systems or respiratory problems for patients. This makes them especially vulnerable to COVID and its life-threatening effects.”

Rare diseases are difficult to identify and often misdiagnosed, resulting in lengthy delays of appropriate treatment. The lack of medical specialists, medications and other therapies for these orphaned syndromes compound the problems.

“It has always been difficult for patients to find a satisfactory medical determination and effective remedies, and with COVID, the stakes are much higher now,” said Kean. “The creation of this advisory council will help improve communication, awareness and treatment. I am pleased the Legislature is moving on this measure in both houses.”

The New Jersey Rare Disease Advisory Council established by Kean’s bill would include 30 members for the purpose of advising the Legislature, State departments, agencies, commissions and authorities, and private agencies providing services for persons diagnosed with a rare disease.

In the U.S., approximately 25 to 30 million people are affected by rare diseases.