Factor Support Network (FSN) advocates for people with bleeding disorders and other high-cost medical conditions through personal empowerment and public health issue advocacy at the federal, state, and local levels.

Personal Empowerment

FSN employees confront many of the same issues affecting all members of the bleeding disorders community. Because members of our staff deal with these challenges, including access to medical care, adherence to treatment regimens, or simply managing the chronic nature of hemophilia, FSN understands the importance of building capacity in our community. By sharing personal insights, life lessons, and other valuable skills, we enable our clients to fulfill their own personal endeavors. By volunteering at hemophilia camps, attending local events, facilitating programs, and helping to raise funds for local activities, FSN pursues efforts to empower community members. Staff members coordinate the Fun with Sports and Nutrition Program to improve the physical health of participants through structured sessions involving safe exercises, experiential learning, and at-home maintenance. The award winning Let the Bandana Game Begin Program offers an engaging and creative program for children who attend summer camp as an arts-and-craft project or as an icebreaker for small groups of campers to learn more about each other.

Public Health

As people affected by chronic conditions, FSN staff and leadership recognize the importance of educating public officials about bleeding disorders and other co-morbidities, as well as advocating for programs and services to protect vulnerable populations. Access to care and services is essential for anyone affected by illness, and staff members maintain advisory positions on state boards throughout the country to ensure appropriate representation for our community based needs. FSN has been actively involved in efforts to ensure the safety of the blood supply, compensation for people affected by HIV, implementation of health reform (especially the removal of lifetime caps and pre-existing condition exclusions), and reimbursement for medication and services required for an optimal quality of life. FSN employees have assumed leadership positions on national boards, activist roles in bleeding disorders community campaigns, service roles on community advisory boards, active support of community-based missions, and advocates in the clinic setting, as well as being conscientious customers of industry.

Advocacy In Action

Paul Brayshaw, Client Services Representative, Factor Support Network, and his wife Frances, hosted President Obama in their backyard for a town hall style discussion regarding the Patient Protection Act. As a person with severe hemophilia B, Paul must endure the challenges of a bleeding disorder. In 2006, confronted with a loss of insurance coverage due to a lifetime benefit cap, Paul struggled to maintain a health insurance policy to pay for lifesaving medications to treat hemophilia. After four years and a seismic shift in the political landscape, Paul has survived to share his story and the benefits of access to health care. The visit by President Obama was an opportunity to highlight the benefits of the Patient Protection Act, and moreover the critical safety net of access to care for people with high cost, pre-existing conditions.