Weinberg Bill To Establish ‘Bleeding Disorders Treatment Fund’ Approved

Measure Would Create Dedicated, Sustainable Funding for State’s Hemophilia Treatment Centers

TRENTON – A bill sponsored by Senate Majority Leader Loretta Weinberg which would create a dedicate, non-lapsing funding source to support New Jersey’s Hemophilia Treatment Centers into the future was approved by the Senate Budget and Appropriations Committee today by a vote of 10-1, with one abstention.

“Unfortunately, we live in difficult economic times for New Jersey, and governors, both Democratic and Republican, have had to make difficult decisions to balance the State Budget from one fiscal year to the next,” said Senator Weinberg, D-Bergen, who also sits on the Budget Committee. “As legislators, we’ve agreed with some of those decisions and opposed others. However, when it comes to certain programs that people depend on, that live up to our collective responsibility to protect the most vulnerable among us, those programs deserve to be protected from the uncertainty of budget deliberations. Funding for the State’s hemophilia programs falls into this category.”

The bill, S-2132, would establish the “Bleeding Disorders Treatment Fund,” a revolving fund administered by the Department of Health, to help ensure the long-term financial viability of hemophilia treatment centers located throughout the State, and to provide an ongoing source of funds to support the purchase of insurance policies and other patient-related services provided through the Hemophilia Association of New Jersey. The bill would require that no less than 60 percent of the monies available in the Fund would be used for the operating expenses of the hemophilia treatment centers, which provide comprehensive and coordinated medical treatment for individuals living with hemophilia. The fund would be paid for using a mix of federal funds and a new rebate requirement of 6 percent on the manufacturers of clotting factor medications, and a 2 percent rebate on home care companies that sell clotting factor to patients residing in the State.

“While we recognize the fiscal difficulties in guaranteeing funds for hemophilia treatment moving forward, we have to recognize that public funding and support has been instrumental in improving the lives of individuals living with hemophilia in the past,” said Senator Weinberg. “Cutting off that support now, without a plan B, would be inhumane and cruel. Many hemophilia treatment centers outside of New Jersey already rely upon the difference between the cost of discounted drugs and the payer’s reimbursement to fund their programs, so the idea of rebates is nothing new.”

Hemophilia is a congenital bleeding disorder that affects approximately 800 males in New Jersey. The condition, which is linked to the X-chromosome that determines gender, is more prevalent in males than in females, because males only have a single X-chromosome, and the defective gene that carries hemophilia is all but guaranteed to manifest if it exists within the gene pool. Hemophilia is characterized by lifelong, frequent and spontaneous bleeds in the joints and internal organs that cause excruciating pain, crippling joint damage, and often death for children and adolescents. It is unique among congenital disorders in that it requires coordinated, multi-specialty comprehensive care from birth until death – there is no cure for hemophilia, and in order to successfully manage the disease, a person with hemophilia must receive comprehensive medical care for their entire lives.

“With the establishment of comprehensive treatment centers for individuals with hemophilia in 1975, and with the increase in availability of clotting factor medications, the lives of those with hemophilia have been vastly improved,” said Senator Weinberg. “The mortality rate for those receiving comprehensive care from State-designated treatment centers in New Jersey has dropped by 40 percent. By making treatment and medication available to those suffering from hemophilia, we’ve taken what was once a certain death sentence, and given these people a new lease on life. We cannot turn our back on this vulnerable population now.”

The bill now heads to the full Senate for consideration.