Bill > A4016

Introduced Session

There is a significant link between rare disease and the coronavirus 2019 (COVID-19) pandemic. Many people who live with rare diseases are immunosuppressed and have respiratory and neurologic issues that make the consequences of the virus much more severe for them. This link heightens the importance of the establishment of an advisory council to examine the issues that affect persons with rare diseases in the State. Therefore, this bill establishes the 30-member New Jersey Rare Disease Advisory Council in the Department of Health to advise the Legislature, State departments, agencies, commissions, and authorities, and private agencies providing services for persons diagnosed with a rare disease. The membership of the advisory council will consist of: the Commissioners of Banking and Insurance, Children and Families, Environmental Protection, Health, Human Services, and the Executive Director of the New Jersey Office on Minority and Multicultural Health or their designees, as ex officio members; two members of the Senate, one appointed by the President of the Senate, and one appointed by the Minority Leader of the Senate; two members of the General Assembly, one appointed by the Speaker of the General Assembly, and one appointed by the Minority Leader of the General Assembly; and 20 public members appointed by the Governor, including two physicians licensed to practice in this State who have expertise in treating patients with rare diseases, one who would be a pediatrician who provides care to children with rare diseases; a registered professional nurse licensed in this State who has expertise in providing care to patients with rare diseases; a representative of general hospital or hospital system in this State recommended by the New Jersey Hospital Association; a representative of federally qualified health center in this State recommended by the New Jersey Primary Care Association; a geneticist licensed to practice in this State; a genetic counselor who has experience in providing services to persons diagnosed with a rare disease, their families, or their caregivers or care partners; a representative of the health insurance industry recommended by the New Jersey Association of Health Plans; a pharmacist licensed to practice in this State who has experience with persons with a rare disease; a representative of the pharmaceutical industry who has expertise in rare diseases recommended by the HealthCare Institute of New Jersey; a representative of the biotechnology industry who has expertise in rare diseases recommended by BIO NJ; a representative of the medical technology industry who has expertise in rare diseases; a representative of the Rutgers Biomedical and Health Sciences who is engaged in rare disease research; a representative of the Rowan University Graduate School of Biomedical Sciences who is engaged in rare disease research; two representatives of rare disease patient advocacy organizations; two persons, age 18 years or older, who have a rare disease; and two caregivers or care partners for a patient or partner with a rare disease; one who would be a caregiver for a child with a rare disease. The purpose of the advisory council will be to: act as the advisory body on rare diseases to the Legislature and State departments, agencies, commissions, authorities, and private agencies that provide services to, or are charged with the care of, persons with rare diseases; conduct a thorough and comprehensive study of all issues relating to the quality of, and access to, treatment and services provided to persons with rare diseases in this State, including the link between rare diseases and the COVID-19 pandemic, and to develop policy recommendations on those issues; establish and implement a repository of best practice to share with health care providers that will ensure they are adequately informed of the most effective strategies for recognizing and treating rare diseases in New Jersey; identify effective research-based strategies that have been developed to help diagnose, treat, and prevent rare diseases; develop effective strategies to raise public awareness of rare diseases in this State; evaluate and make recommendations to improve the State's Newborn Screening Program in the Department of Health and State Medicaid coverage for approved treatments and medications for patients with a rare disease; research and make policy recommendations to the Legislature on access to health insurance specialists and other needed services for patients with a rare disease; and identify, with assistance from the public, additional research topics on rare disease to inform future studies the council may conduct. Finally, the bill requires the advisory council to report biennially, to the Governor and the Legislature on its findings and recommendations on issues relating to the quality of, and access to, treatment and services provided to persons with rare diseases in this State. This bill is similar to H-7094, the "Rare Disease Community Support, Resource Coordination and Quality of Life Act of 2014," that was adopted by the state of Rhode Island earlier this year.

AI Summary

Committee Categories

Daniel Benson (D)*,  Ronald Dancer (R)*,  Anthony Verrelli (D)*,  Chris DePhillips (R),  Thomas Giblin (D),  Carol Murphy (D),  Valerie Vainieri Huttle (D),  Andrew Zwicker (D), 

Substituted by S2682 (1R) (on 05/20/2021)

Official Document