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Measure Would Help Sufferers of Rare Neurological Disorder Receive Necessary Treatments & 24/7 Care

Legislation Assembly members Peter J. Barnes III, Patrick J. Diegnan, Jr., Linda Stender, Ruben J. Ramos, Jr., and Jerry Green sponsored to create a specialized care nursing facility for the treatment and care of patients with Huntington’s Disease was released Monday from the Assembly Health and Senior Services Committee.

“There is a real need to establish specialized care for Huntington’s patients,” said Barnes (D-Middlesex). “The quality of life of patients and their families should not erode completely, simply because of the disease. To prevent that requires specific supervision and care, 24/7, especially in the late stages of the disease.”

Huntington’s Disease is a hereditary neurological disorder that instigates a programmed degeneration of brain cells in sufferers, causing uncontrolled movements, loss of intellectual faculties and emotional disturbances. It is a familial disease, passed from parents to offspring via genetic mutation. The child of a Huntington’s parent has a fifty percent chance of inheriting the disease gene.

Early symptoms of Huntington’s include: mood swings; depression; irritability; trouble driving; difficulty learning new things; difficulty remembering facts; and increased difficulty in decision making. As the disease progresses, concentrating on intellectual tasks becomes more and more difficult and Huntington’s sufferers have difficulty feeding themselves and swallowing.

“Individuals with degenerative brain disorders require a level of care that few places in the state can provide,” said Diegnan (D-Middlesex). “Creating a place where they can receive the specialized care they need is the only humane thing to do for Huntington’s patients and their families.”

The bill (A-387) would require the state Department of Health and Senior Services (DHSS) to create a specialized care nursing facility for individuals requiring long-term care for the treatment of Huntington’s Disease at JFK Hartwyck Nursing, Convalescent and Rehabilitation Center, also known as Cedar Brook.

Cedar Brook is New Jersey’s only Medicaid-approved Special Care Nursing Facility (SCNF) for the treatment of patients with Huntington’s Disease. Under this designation, Cedar Brook receives a $339-per-day Medicaid reimbursement, as opposed to the $193.48-per-day rate for typical long-term patient care. Currently, the facility can care for 24 Huntington’s Disease patients.

“The ramifications of this disease are devastating – in late stages patients must be hand fed meals and require intensive intervention for even the simplest of tasks, like sitting up or going to the bathroom,” said Stender (D-Union). “We have the capability to better serve this segment of our state’s population, so that their last days may be lived with a modicum of comfort and dignity.”

Under the bill, the DHSS would be required to:

– Issue a special care nursing facility license with 30 beds for the current Huntington’s Disease unit at Cedar Brook;
– Continue the existing Medicaid participation agreement for specialized care of Huntington’s patients;
– Authorize Cedar Brook to expand its Huntington’s Disease unit license and Medicaid provider agreement upon demonstration that there is appropriate utilization and future need;
– Adopt admission and discharge criteria for specialized care nursing facilities serving persons with Huntington’s Disease, which will also serve as the prior authorization criteria for Medicaid coverage.

“Given the severity and unique nature of Huntington’s disease it’s imperative that we ensure that patients in New Jersey have access to proper treatment and care,” said Ramos (D-Hudson). “Expanding their capacity so that more families facing this disease can get the help they desperately need is more than just the right thing to do. It’s the compassionate thing to do.”

“The terrible thing about Huntington’s Disease is that patients progressively get worse,” said Green (D-Union). “If it is possible to give patients and their families the option of slowing or combating the ravages of this terrible disease through expanding access to the proper specialized care, we must seize the opportunity to do so.”

The measure now heads to the Assembly Appropriations Committee for further review.