A4052

An Act concerning sickle cell and making an appropriation.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. a. The Department of Health, in consultation with the Department of Human Services, shall establish a three year sickle cell center pilot program, under which six sickle cell comprehensive treatment centers shall be established in federally qualified health centers selected by the Department of Health, with one sickle cell comprehensive treatment center located in each of the following municipalities: Jersey City, Newark, Paterson, Plainfield, Trenton, and Camden. The Department of Health shall select federally qualified health centers for participation in the pilot program on a competitive basis, and shall support the establishment and operation of the sickle cell comprehensive treatment centers from funds appropriated to the department pursuant to section 2 of this act.

b. The purpose of the pilot program shall be to:

(1) link outpatient sickle cell care to inpatient sickle cell care, and provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and surveillance services to adults with sickle cell;

(2) foster outreach to individuals and families with sickle cell and providers of medical, nursing, and social services who serve and treat persons with sickle cell;

(3) promote sickle cell education and awareness;

(4) develop initiatives to build a State medical workforce of clinicians who are knowledgeable about the diagnosis and treatment of sickle cell; and

(5) establish Statewide surveillance of sickle cell to monitor incidence, prevalence, demographics, morbidity, health care utilization, and costs.

c. Each sickle cell comprehensive treatment center shall provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and monitoring services to adults with sickle cell.

d. The Department of Health and sickle cell comprehensive treatment centers shall coordinate with health care facilities and health care professionals to establish centers of excellence for sickle cell research and innovation within sickle cell comprehensive treatment centers, as determined by the Commissioner of Health.

2. There is appropriated from the General Fund to the Department of Health the sum of $10,200,000, which sum shall be used by the department to support the establishment and operation of sickle cell comprehensive treatment centers through the provision of grants to federally qualified health centers selected pursuant to subsection a. of section 1 of this act for the duration of the pilot program. Any unexpended funds shall revert to the General Fund once the pilot program expires.

3. This act shall take effect January 1, 2023 and shall expire three years thereafter.

STATEMENT

This bill establishes a three-year sickle cell center pilot program and appropriates $10,200,000.

Under the bill, the Department of Health (DOH), in consultation with the Department of Human Services, is to establish a three-year sickle cell center pilot program. The pilot program is to consist of the DOH selecting six federally qualified health centers to establish sickle cell comprehensive treatment centers, with one comprehensive treatment center located in each of the following municipalities: Jersey City, Newark, Paterson, Plainfield, Trenton, and Camden. The Department of Health is to select federally qualified health centers for participation in the pilot program on a competitive basis, and support the establishment and operations of the sickle cell comprehensive treatment centers for the duration of the pilot program through the award of grants out of $10.2 million appropriated under the bill for this purpose. Any unexpended funds are to revert to the General Fund once the pilot program expires.

The purpose of the pilot program is to: (1) link outpatient sickle cell care to inpatient sickle cell care, and provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and surveillance services to adults with sickle cell; (2) foster outreach to individuals and families with sickle cell and providers of medical, nursing, and social services who serve and treat persons with sickle cell; (3) promote sickle cell education and awareness; (4) develop initiatives to build a State medical workforce of clinicians who are knowledgeable about the diagnosis and treatment of sickle cell; and (5) establish Statewide surveillance of sickle cell to monitor incidence, prevalence, demographics, morbidity, health care utilization, and costs.

Each sickle cell comprehensive treatment center is to provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and monitoring services to adults with sickle cell. The DOH and sickle cell comprehensive treatment centers are to coordinate with health care facilities and health care professionals to establish centers of excellence for sickle cell research and innovation within sickle cell comprehensive treatment centers, as determined by the Commissioner of Health.

It is the sponsor’s belief that there have been medical advances in prolonging life expectancy for individuals with sickle cell. Despite these advances, sickle cell patients continue to have difficulty accessing care and knowledgeable providers. The average life expectancy for a patient with sickle cell remains 20 to 30 years lower than the average American. Poor access to knowledgeable care and life-altering treatments has limited the impact of these advances for most individuals with sickle cell in the United States, and particularly those living in New Jersey. Because sickle cell is rare, specialty teams are required to accurately diagnose, prevent, reduce, and treat sickle cell’s multi-organ complications and acute episodes. The need for these expert sickle cell teams is increasing in New Jersey.

It is the sponsor’s belief that there is a shortage of sickle cell specialists and integrated comprehensive teams in New Jersey that provide the coordinated medical, social, educational, and behavioral health services that patients and community clinicians need. The sickle cell specialist shortage is most acute for adults with sickle cell. There are few hematologists trained and willing to care for New Jersey adults with sickle cell. As a result, most adults with sickle cell are forced to obtain care in hospital emergency departments and other non-sickle cell specialty settings.

It is the sponsor’s belief that a regional approach is recommended by the CDC for rare disorder health care delivery and surveillance. Hemophilia, a blood disorder five times rarer than sickle cell, has been regionalized for health care delivery and surveillance for over two decades. The regional framework for organizing hemophilia diagnostic and treatment centers encouraged the effective distribution of comprehensive services via organized linkages between these centers in a defined geographic area. Improvements in mortality, morbidity, and costs, as well as being part of national surveillance systems, are benefits to getting care within the regional network. Currently, there are more than 130 Comprehensive hemophilia diagnostic and treatment centers across the country that serve between 70 and 80 percent of the nation’s hemophilia patients. Health care leaders and advocates for other rare, expensive, chronic disorders may find that regionalization improves survival and reduces disability among affected populations.

It is the sponsor’s belief that the lack of a robust and well-resourced sickle cell specialty care center network limits New Jersey’s involvement in scientific advances and patient access to new and potentially better therapies. Clinical trials to test the safety and effectiveness of new sickle cell therapies are best conducted in sickle cell specialty care centers where patients are closely monitored by sickle cell expert clinicians who can rapidly and accurately monitor sickle cell complications.