Provides that persons with clotting protein deficiencies who are otherwise eligible for certain health insurance programs shall have access to reimbursement for certain health services

Summary of provisions

Sections 2510 (7) and (7) (a) of the public health law are amended to include outpatient blood clotting factor products and other treatments and services furnished in connection with the care of hemophilia and other blood dotting protein deficiencies in the definition of Covered Health Care Services and primary and Preventative health care services. A new paragraph is added (xvii) to include blood dotting factor products and other treatments and services furnished in connection with the care of hemophilia and other blood clotting protein deficiencies as defined by the commissioner of health in consultation with the superintendent. Paragraph 1.3 of section 4326 of the insurance law is amended to include outpatient services for hemophilia and other blood clotting protein deficiencies

Justification

Hemophilia is a rare hereditary bleeding disorder affecting roughly 2,000 New Yorkers, resulting from a deficiency in blood proteins known as clotting factors. Without an adequate supply of dotting 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 seldom lived beyond 30. Early treatment consisted of whole blood and plasma transfusions at hospitals. These treatments were difficult, time consuming and only minimally effective. The advent of commercially prepared blood dotting factors in the 1980s represented a major advance in treatment, both in terms of efficacy and convenience. Most importantly, these advances allowed for home infusion.

In addition to hemophilia, there are several other disorders resulting from blood protein deficiencies. These 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 are on a prophylactic regimen to prevent bleeding episodes. This regimen 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.

New York state is the only state in the U.S. that currently prevents individuals qualifying for the State Children's Health Insurance Program (i.e., Child Health Plus) access to outpatient clotting factor products. Moreover, all three programs, Child Health plus, Family Health Plus and Healthy New York, were created to improve access to health care for low-income individuals. Having a public health policy in place that prevents otherwise eligible individuals with hemophilia and other bleeding disorders from accessing lifesaving medications not only violates the spirit of the policy, it fundamentally undermines the programs' goal of ensuring that low-income children and families have access to the quality health care.

Legislative history

New bill 2011.

Fiscal implications

None.

Effective date

This shall take effect on the first of April next succeeding the date upon which it shall have become law.