The National Hemophilia Foundation (NHF) celebrates its 75th anniversary in 2023. Throughout the year, HemAware.org will be commemorating this special milestone with articles that look back at notable programs, initiatives, and events in NHF’s history.
In recent years, there’s been a growing awareness of the need for diversity, equity, and inclusion in all facets of society, including health care. Here’s a look at some of the ways the National Hemophilia Foundation (NHF) has addressed this important issue.
New Addition to Senior Leadership
In 2021, Keri L. Norris, Ph.D. JM, MPH, MCHES, joined NHF as vice president of health equity, diversity, and inclusion, which was a newly created position. At NHF, Norris was hired to create a strategic health equity framework to integrate health equity, diversity, and inclusion into NHF programs and services to address disparities in health outcomes within the community. She also provides internal guidance on fostering a workforce culture that is inclusive, equitable, and creates belonging and that is reflective of the inheritable blood disorders community that NHF serves.
“Health equity work was already in place prior to my hire, but now we’ve incorporated expertise, antiracist practices, and community driven efforts in addition to other things to expand on that work and use our health equity lens with everything that we do as a foundation,” Norris says.
“It’s important to meet the community where they are with resources and realize that not every community needs the same things, so we have to be very strategic,” Norris adds. She says some of the barriers that can impact someone’s care include but are not limited to geographic location, provider bias, cultural differences, zip code influence, language, health literacy, and gender bias in diagnosis.
“All social drivers of health and health outcomes need to be addressed because they keep our marginalized and minoritized community members on the outskirts of care and feeling unwelcomed, therefore they might not seek care at a hemophilia treatment center, or they may decide to opt out of care completely” Norris says.
Resources for Spanish-Speaking Community Members
In 2017, NHF introduced the Guías Culturales program. Guías culturales, or cultural guides, are volunteers within the bleeding disorders community who speak Spanish and have navigated bleeding disorders care for themselves or family members.
Their focus is to not only educate but to bring the voice of the Spanish-speaking community to NHF, says Kate Nammacher, MPH, vice president of education at NHF. “We train our volunteers to go into the community and facilitate workshops in Spanish, but they also come back to NHF and let us know if there’s information that’s missing or anything that we could be doing differently.”
Nammacher says one of the big learnings of the Guías Culturales program has been the importance of having all materials made available at the same time in both English and Spanish. “In the United States, the reality is that you may have folks who speak fully Spanish, some who speak fully English, and some who are fully bilingual. So to truly meet the needs of every family, we need to be providing all the materials in Spanish and English at once, and not translating to Spanish later as phase two of a program.”
Online Forum for Black and African American Community Members
In 2020, NHF created an online space through HealthUnlocked exclusively for Black and African American community members with bleeding disorders, their families, and caregivers.
Nammacher says the decision to create the online forum stemmed from the results of a 2019 needs assessment of Black and African American community members. “What we heard is that it can be hard to connect locally with other Black and African American community members, especially if representation isn’t as high at local events. However, there was a desire to find others who were going through similar experiences, and so we realized there might be value in creating a national online platform for Black and African American people to connect and share experiences,” she says.
In 2022, the platform was transitioned to a Facebook group to make it easier for people in the community to find the group and participate in it.
Health Equity Through HTCs Pilot Program
Another offshoot of the 2019 needs assessment was the Health Equity Through HTCs Pilot Program, which looked at Black/African American patient experiences at two hemophilia treatment centers (HTCs): Rush Hemophilia and Thrombophilia Center in Chicago, and the Louisiana Center for Bleeding and Clotting Disorders at Tulane University in New Orleans.
Nammacher says one of the biggest findings from the study was that many Black and African American patients and caregivers encounter problems when they seek emergency care outside of the HTC. “We heard from parents that there’s this extra bias involved if their child is bruised, and a real concern that the emergency department staff will call child protective services faster because they suspect abuse,” she says. “Also some patients said they felt that emergency room staffers doubted their symptoms, especially around pain.”
This project also included focus groups with HTC staff and healthcare providers, as well as sharing feedback and a collaborative discussion on how the HTCs can better support Black and African American patients and families. Nammacher says there was a better understanding for how social determinants of health can impact someone’s bleeding disorder, and how to keep those issues in mind when talking to patients and caregivers.
Women and Girls Remain Underserved
Although it’s been 20 years since NHF first launched an awareness campaign about the fact that women and girls can have bleeding disorders (rather than merely being “carriers”), Dawn Rotellini, NHF’s chief operating officer, says women and girls remain an “underserved, undermet need community.”
“In the United States, it takes between 13 and 16 years for a woman or girl to get accurately diagnosed with a bleeding disorder to this day,” says Rotellini, “so that shows you that this diagnostic journey is still such a battle.”
To help increase awareness of women’s bleeding disorders so that girls and women receive early, accurate diagnoses, leading to better health outcomes, NHF created the Better You Know campaign, which targets undiagnosed women and their health care providers to get them on the path to diagnosis, treatment, and care. In addition, the Victoryforwomen.org website celebrates the voices of women in the bleeding disorders community, and is a place for women in the community to express themselves, ask their questions, share their challenges, and above all, celebrate the victory of standing up and being heard.
In an effort to be more inclusive to a broader range of gender identities that may face some of the challenges noted above, Rotellini says NHF now uses the term “women, girls, and people with the potential to menstruate.”
In addition to the initiatives above, NHF has made diversity, equity, and inclusion (DEI) a research priority and also provides DEI training for health care providers and chapter staff. “DEI is important in all aspects of our organization,” Rotellini says.