By Sandy Smith
When a speaker missed a flight to the 2023 National Bleeding Disorders conference, the session Cultural Humility in the Healthcare Setting: A Muslim Perspective turned into an opportunity for the National Bleeding Disorders Foundation to hear that Muslim perspective directly from the community.
Brendan Hayes, MPH, CPH, senior director of education, and Keri L. Norris, PhD, JM, MPH, MCHES, vice president of health equity, diversity and inclusion, hosted a conversation with participants.
“We’d love to leave here with a charge,” Hayes said. “What is it that you’d like NBDF to explore?”
The audience brought a long list of areas in which they have been excluded or overlooked. This might include a chapter Christmas party or a meal not including a halal or vegetarian option. Even the lunches in the exhibit hall included a salad dressing with red wine in the dressing, something Muslims who avoid alcohol could not consume. (One said he’d driven to Virginia for lunch before returning.)
One family discussed their experience with a severe form of an ultra-rare bleeding disorder. Another discussed his family in his home country; 16 cousins have hemophilia because of the cultural tradition of cousins marrying each other. Another, who was raised in an American inner city, noted how his generation “didn’t tell anybody we had hemophilia. I wanted to live a normal life,” he said.
Beyond the NBDF experience, Muslims with bleeding disorders can find a culture clash when fasting for Ramadan. “Whenever I tell my primary doctor, he complains.”
Others discussed the challenges of seeing families in home countries without the same access to care, or a lack of outreach to other Muslims with bleeding disorders.
“Things have evolved. As a young man coming up, they didn’t have any of this stuff,” said one older attendee. “When I was your age, there was nothing like this. I went to the conference in Houston, they didn’t have anything like this. Have a little more patience as things evolve.”
Those participating in the discussion were willing to wait on the logistics; waiting for respect was a different matter.
“How you get the respect for the community and the fit?” asked the man who had gone to Virginia for lunch. “The money, food, does not matter. It’s the respect.”
Hayes said her eyes had been opened to possibilities. “We can do more at the chapter level and more at the national level. The other piece is making sure that our ultra-rare families are heard and seen. I can’t think you enough for broadening my horizons.”
Dr. Norris was ready to take action. “I heard what you said about accommodations. This is a problem. We need to address it. There are ways to do this, and you have to have the right advocate in the right place to get what you need. I would hope that you would continue to come back to our events. As we continue to move forward, you will see action happening in real time.”
