By Vicky Uhland
NHF has stepped up its efforts on the DEI front, said NHF Director of Chapter Development Kristi Harvey-Simi during the Thursday afternoon session, DEI in Action: Small Steps, Big Progress.
NHF's Keri Norris, PhD, JM, MPH, MCHES, serves members and staff as vice president of health, diversity, equity and inclusion. NHF started its HEDI champions program, in which NHF employees participate in year-long intensive training in HEDI. It published a health equity white paper at Hemophilia.org/HEDI . And it recently hosted the NHF Health Equity Summit in Atlanta.
The overarching goal, said Harvey-Simi, is to “become aware of implicit biases, microaggressions, social determinants of health, social justice and the implications for bleeding disorders communities.”
During the Health Equity Summit, members of the bleeding disorders community developed four HEDI themes they believe are key for NHF to address:
· Access, including transportation, costs, language and translators, resources and emergency room understanding;
· Mental health, including education stigmas, cultural awareness, the need for more psychologists and therapists and financial stressors;
· Health system navigation, including education of front office staff and providers in non-hemophilia treatment centers, pain-treatment equity, insurance coverage and effective telehealth services; and
· Payer and policy, including copays, legislation, better care coordination and educating payers on bleeding disorders.
Summit participants also developed a series of future steps that chapters can focus on, including creating health equity task forces that will address the four HEDI themes, hosting three community roundtables in 2023, and developing empowerment and equity action plans.
Different chapters have different levels of diversity, equity and inclusion initiatives, Harvey-Simi said. NHF’s goal is for each chapter to develop an action plan for addressing DEI in its community for 2023 by Jan. 1, 2023. Those plans should include at least three actionable items on topics like inclusive language and imagery on the chapter’s website, program brochures and other communications; DEI and HEDI trainings; and capacity-building grants.
The session ended with a roundtable discussion of how different chapters around the country address DEI concerns.
Members of the West Virginia chapter learned that when they emailed invitations to events, some lower-income members didn’t receive them because they didn’t have internet access. The chapter addressed this by mailing postcards as well as sending emails.
Other chapters have discovered that for lower-income families, chapter events may be their family’s only form of recreation. One chapter holds events or meetings in botanical gardens, bowling alleys, zoos and cooking classes as a way to eliminate barriers for families that want to participate. Another makes its weekend meetings more vacation-like to help families bond and relax.
The Idaho chapter has a large Mormon population, so members said they reconsider alcohol-focused events. And in the melting pot Lone Star chapter, some members don’t want to raise money in traditional ways. One solution is a family-oriented La Posada fundraiser planned for this December, featuring music, food trucks and a hot sauce challenge.
“We really want to do better in the DEI area, and sometimes it can be overwhelming,” Harvey-Simi said. “We’re not always going to get it right, but we can be willing to be vulnerable and ask questions. Small steps can really make progress.” ■