Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
How can I begin raising more awareness for hemophilia? I want to be an advocate!
Engaging in advocacy is important in bringing about change that can help people living with rare diseases. Patients and caregivers can begin by using a collective voice to call attention to your narratives and to become an agent for change. Disease awareness efforts can help educate the public and also make an impact on delivery of services. Furthermore, involvement through the legislative process can bring forth dramatic changes in policy across a broad spectrum of issues, including patient choice, health disparities and access to services. Taking on the task of being heard can sometimes feel like a tough fight. Here are some tips that can help you on your way:
- Connect with other patients. Engaging with national or international organizations, such as the National Hemophilia Foundation, the Hemophilia Federation of America and the World Federation of Hemophilia, through social media can help connect you with others with hemophilia. These dedicated organizations often will provide a platform to bridge you with people who organize advocacy activities or forums to get your message to elected officials. Also, reach out to social workers at your hemophilia treatment center, as they are often tasked with coordinating the center’s consumer advisory board (CAB). The collaboration of patients, caregivers and providers on a CAB is essential to helping deliver optimum care and to helping shape policy and program development.
- Raise awareness and communicate with elected officials. Lawmakers and their staff need to hear from people with hemophilia; your story and your expertise will educate elected officials about your condition and what it’s like to live with it. Getting your message out there can come in the form of phone calls, emails, letters and meeting lawmakers in person.
- Share your story. It’s important to share your firsthand experience with a bleeding disorder and how your life has been affected, as it can help focus attention on the need for specific policy change and awareness. Your story can help deliver a message that people with rare diseases deserve the same recognition and resources as others.
—Bobby Korathu, MSSA, LCSW
Korathu is a social worker at the Cardeza Foundation Hemophilia and Thrombosis Center in Philadelphia and a member of the Social Work Working Group.