Patient Advocacy Groups Focus on Key Issues Affecting Hemophilia in 5 States

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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Patient advocacy groups in five states will focus on the challenges affecting patients with blood disorders like hemophilia with the support in part of grants from the Local Empowerment for Advocacy Development (LEAD) program, sponsored by CSL Behring.

The five groups are the Bleeding Disorders Foundation of Washington (BDFW), the Bleeding Disorders Alliance of Illinois (BDAI), the Gateway Hemophilia Foundation (GHF) in Missouri, Hemophilia of South Carolina (HSC), and the Hemophilia Foundation of Michigan (HFM).

Through this funding program, all five organizations received a LEAD grant to support their advocacy initiatives in 2018.

Four of the five groups have a common goal of improving advocacy training. The Hemophilia Foundation of Michigan will use the grant to address advocacy training as well, but as part of a program tackling broader issues.

In Washington State, the hemophilia and blood disorders community is struggling with increasingly complex public policies involving Medicaid, co-pays, and changes to the Affordable Care Act, among others.

BDFW will use its LEAD grant to launch the “Advocacy 102 Summit Training” program, designed to educate up to 40 advocates on how to better inform elected officials regarding healthcare issues.

One of the organization’s main goals is to equip advocates so they can work on the pending federal effort to advance the framework of the Washington State Bleeding Disorder Collaborative into a federal demonstration project.

Similarly, in Illinois, the BDAI will use its LEAD grant to put together a campaign designed to evaluate and address the current and future needs of patient advocacy in the state regarding the bleeding disorders community.

And in Missouri, the GHF will use its LEAD grant to build on its pre-existing Advocacy Ambassador program by providing training to reinforce relationships and increase engagement with key local legislators.

The HSC organization in South Carolina will also spend its LEAD funding to help the patient advocacy group work on accessing Hemophilia Treatment Centers and factor therapies, as well as expanding its Advocacy Ambassador program.

Additionally, the organization will use its grant to address other challenges in the state, including establishing a standard-of-care for hemophilia and bleeding disorder patients in South Carolina.

Finally, in Michigan, HFM will use its LEAD grant to tackle wider goals, which Executive Director Susan Fenters Lerch describes as “burgeoning threats to health care.” HFM’s strategy is to increase youth involvement, education, and leadership at the state level to protect and improve access to care.

“Advocacy is a necessary part of life for all members of the bleeding disorders community,” Lerch said in a press release. “In the words of one of our teen advocates, ‘a bleeding disorder is part of my identity, and advocacy comes along with that.’”

Since the program was established in 2008, CSL Behring has awarded over $1 million in LEAD grants.

“CSL Behring is committed to supporting the important work of these organizations, which play a vital role in expanding patient access to information and healthcare,” said Dennis Jackman, CSL Behring’s senior vice president for global healthcare policy and external affairs.

“This is all the more important during a time of uncertainty around access to care for patients generally, and for those with rare and chronic medical disorders in particular,” he said. “We are driven by our promise to strive to ensure all patients have access to the medicines and services they need.”