Bills that come up for a vote in Washington, DC, often stall as they get defeated repeatedly on the US Senate floor. So it is refreshing to hear that the New York State Bleeding Disorders Coalition (NYSBDC got two bills passed in five years to help residents with bleeding disorders gain affordable access to clotting factor.
The most recent victory was in October 2013, when New York Gov. Andrew Cuomo signed bill A0962a/S2186a into law, which allows children on New York’s Child Health Plus (CHP) insurance plan to have their clotting factor covered for at-home use. When CHP was first implemented in 1991, clotting factor was only covered if it was administered in a clinical setting, such as a hemophilia treatment center (HTC) or a hospital.
“New York state was the only state in the US in which this provision was written into their CHP program,” says Tom Wilmarth, vice president of the Mary M. Gooley Hemophilia Center in Rochester, NY, and chair of the steering committee of the NYSBDC. New York state provided coverage for clotting factor regardless of how it was administered until the New York State Department of Health (DOH) issued a letter in 2006, stating that the law did not cover outpatient use. “That was when we saw coverage start to be dropped,” says Wilmarth. “We knew we needed to take action.”
But determining the appropriate response took some time. NYSBDC had numerous meetings with the DOH to explain the situation and discuss possible options. The DOH eventually told the group that new legislation was necessary to change the policy.
For the next three years, coalition members—including the Mary M. Gooley Hemophilia Center, the Hemophilia Association of New York, the New York City Hemophilia Chapter, the Bleeding Disorders Association of Northeastern NY, the Hemophilia Center of Western New York, the Bleeding Disorders Association of the Southern Tier, and all eight New York HTCs visited Albany to meet with legislators to push the issue.
“It wasn’t easy, because this wasn’t a fiscally neutral bill,” Wilmarth explains. “It was estimated at costing New York about $5 million.” But the coalition stressed the bill’s importance by having families come to show the impact of CHP’s policies. Because Medicaid covered home use, some families had one parent quit a job so they could qualify for the program. “When you have a family with a job opportunity that pays enough to get them off Medicaid, that should be a wonderful thing,” Wilmarth says. “But we had families who would refuse, because their son wouldn’t have access to his medication. That’s devastating.” The group also referred to studies that showed the long-term implications for people with bleeding disorders who do not treat prophylactically, and the impact that could have on the state.
NYSBDC found two sponsors for the bill: Sen. Joseph Robach (R-Greece) and Assemblyman Micah Kellner (D-Manhattan). The bill passed unanimously in October 2013. Coverage for home use went into effect April 1, 2014. The group experienced a previous victory in 2010, when it helped pass a bill that prohibited insurance companies from establishing a fourth tier for expensive medications, such as clotting factor. Tier IV drugs typically require coinsurance based on a percentage of the cost of the medication, which would make it too expensive for many people.
Wilmarth credits the strength of a united coalition as key to its legislative victories. While the various chapters and HTCs in the coalition worked to win over their individual legislators, at all times the coalition functioned as a team. “For the bleeding disorders community, this is a wonderful example of what a state can accomplish when it comes together and focuses on a single goal.”