Racial and ethnic disparities in healthcare are nothing new. Black and Latinx people have long struggled with getting others to understand the added barriers they face to receiving necessary and adequate care.
“We know that there are multiple disparities across chronic diseases, including inherited blood disorders,” says Keri Norris, PhD, MPH, MCHES, the National Hemophilia Foundation’s (NHF) first vice president of health equity, diversity and inclusion. “Marginalized populations are often blamed for their own poor health outcomes because many relate their condition mostly to behavioral choice or poor medication adherence.”
Norris, who joined NHF in March 2021, says that the unconscious bias of some health providers permeates the healthcare experience of people of color. Addressing it is something Norris says she will do on behalf of the bleeding disorders community. “It’s a systemic issue that needs to be addressed,” she says.
Unconscious bias isn’t the only issue standing in the way of progress on health equity, Norris says. “Marginalized populations often have what we call ‘competing interests’—socioeconomic barriers such as having to make the decision between paying a bill, paying for child care or paying for healthcare, paying for transportation to visits with their providers, and the ability to afford their medication as well,” she says.
“There’s also access to care—not just being able to get to the physician’s office, but also access with regard to health insurance, like not being insured or being underinsured. And then there are institutional practices and policies in place that create an unequal footing for certain populations.”
In marginalized and underserved communities, standard outreach measures may not be enough to overcome some of the obstacles to care. For the Black community, that also means overcoming systemic racism and deep-seated mistrust of the medical profession based on horrific historical mistreatment (such as the Tuskegee Institute syphilis study on Black men that lasted from 1932 to 1972). In the Latinx community, the language barrier is often an overriding issue. Immigration status and religious beliefs also impact care. For both, cultural, economic and social support also play a role.
What Are Health Disparities and Health Inequities?
Understanding the difference between health disparity and healthy equity in healthcare can be confusing. Here’s how the Centers for Disease Control and Prevention defines each term.
Health disparity
A health disparity is defined as “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.”
Health equity
Health equity is defined as the “attainment of the highest level of health for all people. Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities.”
Change Starts with Listening
“Before we can address barriers, we have to make sure that we completely identify all of the barriers that are in place, across varying populations,” says Norris, who has worked in health equity for 20 years.
Through recent initiatives, NHF has shown its commitment to addressing racial and ethnic disparities and inequities within the bleeding disorders community.
In 2019, NHF commissioned diversity, equity and inclusion consultant Kelly Macías, PhD, to conduct a needs assessment of the Black community regarding the joint health needs of Black people with bleeding disorders. The study was funded through a joint agreement between NHF and the Centers for Disease Control and Prevention.
Most focus group respondents said hemophilia treatment center providers understood their needs, and that they had a higher level of comfort with them, Macías says. But several issues kept coming up regarding other healthcare settings.
“They feel like their pain is often not taken seriously—that health providers often think they might be drug-seeking. They feel they have to prove that they are in pain, particularly in ER settings,” she says.
Respondents also said they need to more strongly advocate for themselves because providers often question their understanding of their own bleeding disorder, or assume that their own or their child’s bleeds are due to bad behavior or bad parenting. “They might be talked down to. And they would respond by saying, ‘No, actually, I know what I’m talking about,’” Macías says.
Participants appreciated the opportunity to discuss their experiences in a safe setting with other Black members of the bleeding disorders community, Macías says. “They said, ‘No one’s ever asked us before’…and that they’d never been brought together in a group like this.” That led to participants exchanging contact information and agreeing to keep in touch.
Macías also surveyed several HTC providers, part of an ongoing effort to find out what providers need to better serve their Black patients.
While the needs assessment did not include other people of color, Macías, who has worked on equity issues for over 20 years, says it’s a good place to start. “If you start with the most vulnerable, it gives us a road map to figure out how we expand policies and practices out to others…It’s a building block to serving other underserved communities,” she says.
Putting Thoughts Into Action
Initiatives launched in 2020 stemmed from NHF’s Blue Sky 2030 vision, NHF’s organizing vision created from community input, says Brendan Hayes, NHF’s director of education and innovative therapies. “The focus is to remove barriers along the patient journey to ensure quality education, access to diagnosis and treatments, and standards for care and support for all our community members,” Hayes says.
For 2021, NHF has dedicated one of its four department objectives to health equity, launching a Health Equity Working Group. “We’re focused on improving equitable health outcomes by identifying issues and potential solutions through the work we do,” says Hayes, who will head the group.
Through ongoing discussions, Hayes says she keeps hearing two things from Black and Latinx community members: “We want to ensure our voices are heard. We want to feel included in the decision making.”
NHF has responded to this need to be heard and to listen. In 2020, it created an online space through HealthUnlocked, exclusively for Black community members with bleeding disorders, their families and caregivers. Connie Montgomery, who has spent the past decade conducting diversity training for chapters nationwide through NHF’s Cultural Diversity Taskforce, serves on its patient advisory group.
The online forum was a direct result of the needs assessment, Montgomery says. “We found Black people really wanted a place where they could have a voice and feel safe to just be open and honest and authentic about the things happening to them—about life with a bleeding disorder, and of course, now, going through this pandemic.”
For several years Montgomery, who lives in South Carolina, has also facilitated an NHF educational workshop called the Patchwork Quilt, where participants share life experiences and learn from one another. “We address the need for diversity head-on. And how we can embrace that within our chapters, and within our overall community,” she says. Part of the program is to construct a small quilt together—a tapestry that symbolizes both unity and everyone’s uniqueness, Montgomery says.
Improving the Healthcare Experience
To help providers better serve the Black community, NHF has partnered with Tulane University in New Orleans and Rush University in Chicago on the HTC Black Communities Project. “These healthcare systems have large Black populations. We’re trying to understand their unique medical needs and how we can better address them,” Hayes says.
Tammuella Chrisentery-Singleton, MD, chief of hematology for the Louisiana Center for Advanced Medicine, has served the bleeding disorders community in the Greater New Orleans region for the past 20 years. She says the issues surrounding health disparities for people of color are “multifaceted and multilayered.”
To truly reach the Black community, she says, providers first need to understand what’s shaped their belief systems. Singleton also stresses the importance of providers uncovering the nonmedical factors that keep people of color from getting the healthcare they deserve, such as transportation, housing and employment issues, which are known as social determinants of health.
“We still have a disconnect,” she says. “We need to figure out what the real issues are. Because if you don’t experience those issues yourself, how do you really understand what’s happening? There are real-life issues that are extra hard to overcome when you’re a minority.”
NHF’s Inhibitor Education Summit (held prior to the pandemic) showed the importance of engaging Black patients, providers and caregivers in one forum, Singleton says. (Inhibitors are more prevalent in Black people who have hemophilia.) “It was great in terms of not only having a safe space for patients to talk and know they’re not alone, but also to have support, and to hear some constructive ways that they can start to address some of those things for themselves and to empower themselves.”
Much-Needed Forum
NHF is utilizing its community-powered registry, Community Voices in Research (CVR), to bring the voices of marginalized community members to the forefront by listening to their stories, understanding their needs, and hopefully meeting them where they are, says Rosaura Vidal, a clinical research education specialist at NHF.
“We recently hosted a Virtual Advisory Panel (VAP) in collaboration with an industry partner, where participants who identify as African American and/or Latinx from CVR were able to share their healthcare journey with us, from diagnosis to learning to manage their disorder to the struggles that come along with that, and it was truly impactful,” Vidal says.
Vidal says the goal is “to gain a better understanding of the unmet needs of communities of color in order to help identify priorities to improve those lived experiences, and we hope to achieve this by continuing to actively recruit participants in CVR and providing them the platform to add their voice, because we are listening.”
Bridging the Language Gap
For the Latinx community, NHF started Guías Culturales in 2017. 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. It’s a buddy system to foster better healthcare.
When Fel Echandi’s son was diagnosed with hemophilia in 1999, he had difficulty finding information in Spanish about bleeding disorders. “We still had dial-up internet then. Now with advances in technology, there are more resources available in Spanish to those newly diagnosed,” says Echandi, who is originally from Costa Rica.
Eventually the Echandis found a book in Spanish. But that initial lack of education frustrated Echandi and his wife, Laura, as they tried to navigate their son’s healthcare. It’s a frustration felt by many Latinx.
It wasn’t until they switched doctors that the Echandis were told about the local NHF chapter. “We were overwhelmed with all the help that we got,” Echandi says. To give back, Fel and Laura have volunteered with NHF for the past six years. And they both became guías culturales.
While the Latinx community isn’t a monolith, many find it difficult to communicate with healthcare providers, either because of the language barrier or because of cultural norms, Echandi says. Several families he serves have also experienced problems with school districts confusing their child’s bleeding disorder for abuse.
“Many families have questions that are never answered because they’re too afraid to ask,” he says. “Once they get education on bleeding disorders in Spanish, they’re more open to ask questions, of providers and NHF, and to advocate for themselves.”
While the Echandis are based in California, guías culturales assist Spanish-speaking members throughout the United States. Fel has worked with families in Colorado and Wisconsin, for example. Echandi also presents workshops at chapter events nationwide to help with their outreach to the Latinx community. Throughout the pandemic, he also presented Zoom workshops in Spanish.
“One of the things we’re trying to teach (Latinx families) is how to deal with their healthcare providers, how to know their rights as a patient, how to make their voices heard,” Echandi says.
The online portal for Guías Culturales has educational materials and programming in Spanish. NHF also offers both its Steps for Living program and HemAware.com articles in Spanish. It plans to translate more online content into Spanish, as well as offer more educational programs, such as webinars, in Spanish.
NHF wants to ensure content and programs are culturally appropriate and diverse, Hayes says. “We’re really examining the way we’re developing resources and looking at those already developed to ensure we’re doing what’s best for our community.”
Tackling Cultural Competency
For the Black community, 2020 also highlighted racial tensions over social justice issues—something that carries over into healthcare, says Cathy Tiggs, a Black social worker with the HTC at the University Hospitals Cleveland Medical Center for the past 15 years. The disproportionate toll of COVID-19 on people of color has further solidified their mistrust of public health, she says.
“There’s always been a hesitancy to engage in medical care. But the reactions of people and of our government over the last six to nine months have taken some of our patients and people in the Black community back 50, 60, 70 years,” Tiggs says.
Despite her own experience with factor VII deficiency—a rare bleeding disorder—Connie Montgomery still can’t convince some of her family members to get tested. “It’s difficult with Black women from older generations because of the racial bias in the medical community and inherent mistrust because of systemic wrongs done to the Black community in healthcare,” she says. “You have to be aware of these issues before you can start to relate to someone else.”
Tiggs still sees the damage of medical mistrust in older Black men, who often delay treatment for their bleeds. “A lot of our older guys just wait. They struggle through the pain,” she says.
Patients of color, says Tiggs, continue to bump up against racial and ethnic stereotypes. “Even though we do cultural competence training, we still don’t always engage in great cultural competency in the clinic room,” she says. “Sometimes there are things that happen that the provider doesn’t understand. Sometimes it comes down to the cultural context within that family.”
Social workers can help bridge the communication divide between patients and providers, Tiggs says. But providers can ask questions upfront that can help to overcome cultural hurdles. For example, who should the provider address in the family, who is the head of the household, and what do they feel comfortable discussing with the provider? What providers may see as failure to answer questions or comply with treatment may simply be due to the fact that the decision maker wasn’t in the room and needed to give the final approval, Tiggs says.
Bolstering cultural competency among HTC providers also concerns Singleton. “We have a lot of doctors, nurses, social workers, physical therapists who are not only highly educated, they’re also very experienced. Many of them have been around a long time, serving patients in the Black community. But that doesn’t always equate to cultural competency,” she says.
As a Black healthcare provider, Singleton urges providers to learn from their Black and Latinx counterparts. “My Latino brothers and sisters, people from Indigenous communities, they can speak to the things that are important to know about those communities that I don’t know anything about,” she says.
The first step is having the conversation, Singleton says. “Part of the issue was we thought we were doing OK, and we’re not. So, I know that I’m incredibly happy and proud that we’re now asking questions as a community. And I’m very hopeful that we’re in a position where we’re now willing to listen to the real answers to some of the questions.”
For her part, Norris is excited about what the future holds. “I can honestly say that in my experience working in health equity with various disease states and various teams all across the country, that I have never seen such passion, dedication and willingness to rise to the occasion to ensure equity,” she says. “In the long term it simply boils down to equitable access and treatment and opportunities for every member of the community so that they and their families can thrive.”