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LEAD Grant Examples

Please click on each topic below to read some successful LEAD Grant Award Winners.

Legislation to enhance patient access

Problem: The New York Children’s Health Insurance Program (CHiP) would cover only clotting factor administered in an inpatient setting, which can be a barrier to access. According to Linda Mugford, Executive Director of the Hemophilia Association of New York, “This lack of coverage has caused many families who are eligible for the program to not utilize it, and can lead to financial hardship and difficulty in accessing factor.”

Solution: After unsuccessful attempts to find a fix through administrative channels, the New York State Bleeding Disorders Coalition, comprising patient-consumer community organizations in New York State, mobilized to make this its signature issue for legislative action.

LEAD Grant Award: The Hemophilia Association of New York (HANY) applied for a LEAD grant on behalf of the coalition. The LEAD grant was awarded, providing support for the coalition’s efforts to build its argument for the legislation and continue to build its statewide advocacy infrastructure to ensure success on this and future issues. The coalition drafted legislation, secured sponsors, and educated legislators on the issue, as well as the benefits to the state in making this change in policy. Ultimately, the coalition succeeded in seeing the legislation signed into law by the Governor in October 2013. Effective April 1, 2014, children enrolled in the CHiP program can now receive their factor in multiple settings, including in-home infusion.This was a multi-year effort that required the full commitment of the members of the coalition to work collaboratively. The bill was not successful in early attempts, but the coalition learned from each setback how to strengthen their argument and build more support for their position.

Congratulations to the New York State Bleeding Disorders Coalition for its effectiveness in Advocacy.

Building a collaboration for action on vWD awareness and diagnosis, laying groundwork for ongoing collaboration

Problem: People with Von Willebrand disease often go for years undiagnosed, therefore not receiving the treatment they need to manage their condition.

Solution: The Bleeding Disorders Alliance of Illinois sought to widen the net of healthcare professionals who could be educated to identify the symptoms of vWD and recommend to parents that they seek follow up for their child to receive proper diagnosis and treatment. Following on other initiatives that focused on School Nurse Education, the BDAI created a coalition of chapters in the Midwest to host a summit with the National Association of School Nurses (NASN) to bring wider attention to the need for earlier diagnosis.

LEAD Grant Award: BDAI was awarded a LEAD grant to support the development and execution of this summit of School Nurses. This summit brought together members of NASN, representatives from bleeding disorder organizations and thought leaders from the medical and healthcare community in the Midwest who examined and discussed some of the main barriers to early detection of VWD. The summit was a great success, and video was taken and shared with NASN and others to continue to spread the word through social media.

Ongoing collaboration: Beyond the importance of raising awareness of vWD outreach, this initiative also laid the groundwork for further collaboration among the Midwest Chapters, leading to a second LEAD grant, awarded to Hemophilia of Indiana, Inc., for HTC Social Worker education to assist with helping patients with bleeding disorders identify appropriate coverage. This initiative will take place in August 2014 and more details will be shared on the scope and outcomes of this effort that will bring together staff of the National Hemophilia Foundation, the Midwest chapters and social workers from HTCs for a deeper dive into the Marketplaces, all in time for open enrollment in November 2014.

Congratulations to the Midwest Chapters for an ongoing collaboration that continues to yield results for the patients they serve.

Assisting patients denied immune globulin through their insurance coverage

Problem: Patients reliant on intravenous immune globulin did not have the necessary resources to file appeals with their insurers when coverage of IVIg for chronic illnesses was being denied.

Solution: Advocacy for Patients with Chronic Illnesses, Inc. determined that a big obstacle facing patients who sought to appeal insurance decisions was the lack of a central clearinghouse of information. The proposed solution was to create an online library of resources that patients and advocates can download when they need support for coverage of IVIg.

LEAD Grant Award: Advocacy for Patients with Chronic Illnesses, Inc. was awarded a LEAD grant specifically to create a new section on their website specific to immune and autoimmune diseases, including medical literature, sample appeals letters and guidance on how best to appeal an insurance company decision. In addition, a hard copy guide book was created and shared with several organization to provide guidance to their constituencies on how to prepare insurance appeals.

LEAD Grant Award: Advocacy for Patients with Chronic Illnesses, Inc. was awarded a LEAD grant specifically to create a new section on their website specific to immune and autoimmune diseases, including medical literature, sample appeals letters and guidance on how best to appeal an insurance company decision. In addition, a hard copy guide book was created and shared with several organization to provide guidance to their constituencies on how to prepare insurance appeals.

Ongoing collaboration: Founded by patient advocate Jennifer Jaff, Advocacy for Patients with Chronic Illnesses was renamed in her honor after her untimely passing. The Jennifer Jaff Center maintains a section on their webpage on how to file insurance appeals and continue to maintain an IVIg patient resource section within their advocacy page to guide individuals as to how to appeal and assisting in providing the necessary resources for such appeals. The Jennifer Jaff Center (thejenniferjaffcenter.org) is a valuable resource for individuals and the new section on IVIg appeals is directly attributable to a LEAD grant awarded to the organization in the fall of 2009.

Congratulations to the Jennifer Jaff Center for creating a valuable resource to help individuals reliant on IVIg become better advocates for their own care.

Please submit the LEAD Grant Application to be considered.

CRP16-05-0001 05/2016
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