City council passed legislation last week, championed by former nurse and Councilmember Mercedes Narcisse, to include more education and detection of sickle cell disease in New York City Health + Hospitals. The disease is most common in African nations and in people of African/Caribbean descent, which has led to a wide disparity in how those afflicted receive care and treatment.
“We have a large population that are of Caribbean and African descent in New York City, even before the asylum seekers were increasing. So it is our problem,” said Narcisse. “I’m from the Caribbean and I have sickle cell trait, my daughter has the trait, and I have two nieces with sickle cell disease.”
Sickle cell is a lifelong blood disease that affects the way red blood cells carry oxygen throughout the body. It can lead to stroke, eye problems, infections, and chronic pain.
According to the National Heart, Lung, and Blood Institute (NHLBI), sickle cell disease “affects more than 100,000 people in the U.S. and 20 million people worldwide.” Additionally, about 1 in 13 Black people are born with sickle cell trait, carrying only one copy of the altered hemoglobin gene. The disease is also found among Hispanic, southern European, Middle Eastern, or Asian Indian communities, per NHLBI.
The bill, Introduction 968-B, requires the Department of Health and Mental Hygiene (DOHMH), to create culturally sensitive guidance to educate medical professionals and the public about the sickle cell trait and disease, often found through genetic screening and pain management of the condition.
New York City is currently in the throes of an opioid crisis, an issue that dominated the early 2000s and decades prior, and has led to a high number of overdose deaths in Black and brown communities. The opioid crisis, coupled with medical bias and the systemically racist assumption that Black people can tolerate more pain than other races, means that they often experience discrimination when it comes to patient pain assessment and pain management.
“The amount of pain that comes with it [sickle cell disease], all you want is the medication. You’re crawling like a baby sometimes, it’s so painful when you’re in crisis,” said Narcisse. This is why her bill is focused on educating professionals, delivering care, and making sure the population understands the disease.
Racial disparities in medical treatment and access to healthcare in the U.S., along with a lack of investment in medical research, have exacerbated the negative impacts of the disease on Black individuals diagnosed and their families, said Speaker Adrienne Adams.
“By educating and guiding medical professionals and the public on how to detect the sickle cell trait, we are making necessary investments into life-saving preventative care,” said Adams.
Narcisse is excited about advancements in gene therapy and editing that can prove to be a “gamechanger” cure for the disease. A bone marrow transplant is currently the only cure. She said the screening and treatment process is considered expensive, but the earlier people know their status the easier it is to plan for it.
She notes that if you’re born in the city or U.S., you’re likely screened for sickle cell automatically. But if a person immigrated here it’s more likely that they won’t be diagnosed or have access to adequate care. She is advocating in her bill for more education and outreach among undocumented groups prone to the disease.
“That’s the bottomline, get everyone screening. And we know that most of our undocumented population end up at H + H hospitals,” said Narcisse.
Amsterdam News reached out to a few African immigrant advocate groups about the bill. The consensus was that the goal to provide screening for sickle cell disease was admirable. But they agreed that the more overarching language barrier and resource issues in the ongoing asylum seeker crisis has made it difficult for immigrants to access healthcare altogether.
Dr. Seydi Sarr, founder of African Bureau of Immigration and Social Affairs (ABISA), said that she encounters at least 10 different African languages and dialects a day dealing with the city’s immigrant population. She said that social services eligibility is the focus because it’s hard to get people access and familiar with the bureaucracies of insurance with the language barrier.
ABISA’s language lines are often utilized by nurses and doctors to speak with their patients, said Sarr. She suggested that city language line workers be hired from within established immigrant communities in New York to provide 24/7 assistance for asylum seekers. Sarr added that the city needs more emphasis on effectively training service providers on how to communicate with their patients who come from a range of cultural backgrounds and speak vastly different languages.
“They come into our communities and it’s a very transactional model,” said Sarr. “If service providers are not taking the time to educate communities about what’s going on, then what’s the purpose of it?”
Founder of the Black and Arab Migrant Solidarity Alliance (BAMSA) Diane Enobabor said historically and currently there’s not enough information collected on people’s health needs during intake. “When they’re triaged at Roosevelt and signing up for housing, I’m confident that what could be considered an ailment is not adequately communicated just because there [aren’t] enough language translators or interpreters for African communities,” said Enobabor.
Enobabor added that asylum seekers are extremely wary of asking for medical assistance because they fear it will affect their asylum claim in court and they aren’t always aware of their rights as an undocumented person. In addition, healthcare access requires city or state identification and other information that’s not readily available in respite centers or shelters, said Enobabor.
“I think we’re at a surge of people right now,” said Enobabor. “The sentiment for many asylum seekers, given language barriers, is that these things are inaccessible until you have some sort of work authorization or identification card.”
Narcisse’s bill is awaiting a signature from Mayor Eric Adams to be enacted.
Ariama C. Long is a Report for America corps member and writes about politics for the Amsterdam News. Your donation to match our RFA grant helps keep her writing stories like this one; please consider making a tax-deductible gift of any amount today by visiting https://bit.ly/amnews1.