By Ann LeWalk, MA, HFA Vice President of EducationÂ
In the best of times, people with bleeding disorders are at a greater risk of depression. However, during the COVID-19 pandemic, the isolating effects of a chronic disorder, coupled with the forced social distancing, has only magnified mental health issues in the bleeding disorders community.Â
Recognizing the importance of mental health and wellness, Hemophilia Federation of America has committed 2021 to a focus on mental initiatives by raising awareness, providing resources and advocating for mental health services for the bleeding disorders community across all programs and services throughout this year and beyond.
HFA began the initiative by creating an internal Mental Health and Wellness Task Force. To ensure communication of the initiative across the organization, each HFA department is represented. Staff members act as the liaison between their team and
the task force. All HFA staff members have incorporated mental health initiatives into their annual goals, demonstrating our organizational commitment to mental health and wellness.
Listen First
As with all initiatives HFA commits to, the Mental Health and Wellness Initiative is in response to the voice of the bleeding disorders community. HFA and its staff make it a priority to listen to the community, to reach out to all segments and be responsive to the community’s needs by meeting members where they are.Â
Over the past year, the world has learned to pivot, change and adapt to new ways of conducting business, educating and socializing. For some people, adapting to these changes without social interaction and support is too much to handle.
Recognizing the bleeding disorders community was especially vulnerable, HFA conducted educational webinars and surveys of the community in 2020 to determine the impact of COVID-19 on their lives.Â
Through HFA’s communications, community members voiced frequent concerns about depression, anxiety, isolation, trauma, addiction, suicide and grief. The Mental Health and Wellness Task Force is using the community’s voice to develop ways to address these mental health issues across all HFA programs and services.Â
Raise Awareness
From the beginning of the mental health initiative, HFA has acknowledged that it is not a mental health service provider and does not have the expertise to solve the growing mental health crisis. But, as a national bleeding disorders organization, HFA does have the capacity and the obligation to address issues that affect the bleeding disorders community in disproportionate numbers.
HFA will leverage its national reach to raise awareness about mental health and wellness through social media, publications and educational webinars and build a repository of easily accessible mental health resources on its website.
Gather Resources
As a national organization, HFA is fortunate to have access to many highly qualified, nationally recognized mental health professionals interested in providing information and acting as trusting resources for members of the bleeding disorders community. Leveraging these relationships, HFA is able to provide the community with educational webinars, toolkits of materials, links to support groups and crisis lines, and trainings to identify, understand and respond to signs of mental health crises.
Advocate for Mental Health Services
As an advocacy organization, access to quality, affordable health care is a priority for HFA. That includes access to appropriate, affordable mental health services. With the increase of mental health concerns since the pandemic started, reports have surfaced about community members who have been denied access to in-patient mental health services because they have a bleeding disorder.
HFA’s policy and advocacy team will complete an environmental scan to identify barriers to in-patient mental health care and determine how widespread the issue is in the bleeding disorders community. The organization will consult with other infusion/injectable patient advocacy organizations to determine the depth of the issue. Depending on what is found, HFA hopes to identify stakeholders at mental health in-patient facilities to establish mitigation solutions.
Working Together
HFA and the National Hemophilia Foundation have agreed to work collaboratively to prioritize mental health and wellness in the bleeding disorders community through the formation of a coalition of organizations with similar interests. The two organizations aim to partner with mental health organizations, bleeding disorders organizations, HFA member organizations, NHF chapters and hemophilia treatment centers to address mental health and wellness in the bleeding disorders community.
Throughout 2021, HFA and NHF will launch coordinated messaging and resources on their respective websites and begin to cross-promote educational events and training opportunities. Through the spirit of collaboration, the two national organizations will address the mental health crisis in the bleeding disorders community more efficiently and effectively.
