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Kellner Law Ensures That Young New Yorkers with Hemophilia & Other Clotting Protein Deficiencies Will Have Outpatient Services Covered Under State’s ‘Child Health Plus’ Program
Legislation authored by Assembly Member Micah Z. Kellner that provides outpatient coverage under the State’s Child Health Plus program to New Yorkers with hemophilia and other clotting protein deficiencies was signed into law yesterday by Governor Andrew Cuomo. The law will take effect on April 1st, 2014. Assembly Member Kellner said, “It’s a great day for young New Yorkers with hemophilia and other blood clotting deficiencies, who will soon be eligible for coverage of their conditions under the State’s Child Health Plus program thanks to this new law. This is a long-overdue measure to close the gap in coverage for these New Yorkers that occurred when the legislation creating Child Health Plus was first drafted 22 years ago. “I am grateful to Governor Cuomo for signing this important measure; to my colleagues in the Assembly who voted unanimously for it; to Senate sponsor Joseph Robach for leading a bipartisan majority in passing this bill through the State Senate; and to the advocates, patients, and families who’ve worked so long and hard to secure its enactment into law.” Thomas Wilmarth, Chair of the New York State Bleeding Disorders Coalition, said, “This bill will allow children with bleeding disorders who are on Child Health Plus to have equal and fair access to the same standard model of care that those on Medicaid and private insurance currently have. No longer will we have families keeping themselves in Medicaid or spending themselves down into Medicaid to ensure that their child has access to life saving medication. This is both good for the State and for the health of children with bleeding disorders. The New York State Bleeding Disorders Coalition would like to thank our bill sponsors, Assemblyman Micah Kellner and Senator Joseph Robach, for their leadership in getting this bill introduced, and all of the cosponsors and legislators who supported and guided us through the process.”

BACKGROUND: The legislation (A. 962A/S. 02186-A), which passed the Assembly and the State Senate earlier this year, amends Subdivision 7 of section 2510 of New York State public health law to ensure that persons with hemophilia and other clotting protein deficiencies who are otherwise eligible for the Child Health Plus program shall have access to reimbursement for outpatient blood clotting factor concentrates and other necessary treatments and services. Hemophilia is a rare hereditary bleeding disorder affecting approximately 2,000 New Yorkers, resulting from a deficiency in blood proteins known as clotting factors. Without an adequate supply of clotting factors, individuals can experience prolonged bleeding following routine medical and dental procedures, trauma, and a range of physical activities. Additionally, individuals with hemophilia often experience spontaneous internal bleeding that can cause severe joint damage, chronic pain, and even death. Prior to the 1970’s, individuals with hemophilia rarely lived beyond middle age. Early treatment generally entailed transfusions of whole blood and plasma at hospitals. These treatments proved arduous, time-consuming and only minimally effective. The advent of commercially prepared blood treatment allowed for home infusion and improved the efficacy and convenience of treatment for persons with hemophilia and other clotting protein deficiencies. In addition to hemophilia, disorders resulting from blood protein deficiencies include Von Willebrand Disease (VWD), the most common bleeding disorder, affecting approximately two million Americans. Individuals with the severest form of VWD rely on clotting factor treatments similar to those used by individuals with hemophilia. Clotting factor products produced today (derived from plasma or recombinant technology) are very safe and highly effective medications. Access to therapies has vastly improved both the health outcomes and quality of life for the majority of patients and their families. Many patients today rely on a prophylactic regimen to prevent bleeding episodes. This preventative regimen, along with the coordinated care provided by hemophilia treatment centers, has significantly reduced visits to emergency rooms, hospitalizations and joint damage. Further, the ability to manage hemophilia and other bleeding disorders outside of the hospital setting has improved attendance for school-aged children, decreased absenteeism from work for adult patients and caregivers, vastly improved the ability of affected persons to join the work force, and minimized life disruptions for the entire family. Until now, New York State’s Child Health Plus program presently has not covered clotting factor therapies prescribed for use at home by individuals with hemophilia and other clotting protein deficiencies. The new law authored by Assembly Kellner will bring New York State into line with other statewide children’s health programs; until now, New York has been the only state whose children’s health program did not provide coverage for outpatient clotting factor products used by individuals eligible for a statewide children’s health program. There are eight comprehensive hemophilia treatment centers in New York State, including the Regional Comprehensive Hemophilia Diagnostic and Treatment Center at the Weill Cornell Medical Center of NewYork-Presbyterian Hospital, located in the 76th Assembly District represented by Assembly Member Kellner. These centers provide preventive medicine to eliminate or minimize complications stemming from hemophilia and other associated coagulation disorders.




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