Part II in a four part series on health outcomes affecting Black Minnesotans. You can read Part I, about breast cancer disparities, here.
Popular Twin Cities DJ, Mickey Breeze, remembers trying to explain to his teachers growing up why he was often in and out of school.
“I’d have teachers that either think I’m possibly putting on a show, or they’re not familiar with what to do in a crisis situation, or if I’m out of school for a long time and it’s something short of like a broken leg or some sort of diagnosis, they’re not sure what to do with that information,” said Breeze, whose given name is Mckinley Breeze-Maxwell West.
Breeze has sickle cell disease.
In the U.S., sickle cell affects around 100,000 people. For Black Americans, the impact is felt disproportionately, with one out of every 365 Black people having sickle cell disease. Those who suffer from it rely on blood cell transfusions to mitigate the crippling pain. Unlike with a common transfusion, blood donations for sickle cell patients needs to match more directly than just type, making the race of the donor a critical factor. Nationally, the chances of finding a Black donor match is 29% compared to 78% for white people, according to James Burroughs, the vice president and chief equity and inclusion officer at Children’s Minnesota.
That inequity reflects on patient experiences.
“(The inequity) is felt tremendously,” Burroughs said. “If you need a transfusion and you don’t have the blood that matches your blood type to get that transfusion, you have to wait longer. And it’s then a longer pain crisis, a longer hospitalization.”
The toll it takes
Sickle cell disease occurs when there aren’t enough healthy red blood cells to carry adequate oxygen throughout the body. As a result, it causes extreme, unpredictable pain that can often lead to emergency room visits and long periods of hospitalization. Between 2016 and 2018, 93% of people hospitalized in the U.S. for sickle cell were Black, and compared to white patients, they were more likely to have significantly higher odds of sickle cell crisis and blood transfusions, according to patient data from 2016 to 2018.
Breeze recalled a pneumonia flare-up he had, which put him in the hospital for several weeks.
“My sickle cell amplified so much to the point where I was having physical pain in my arms and legs versus just my chest,” Breeze said. “The doctors told me it was some unknown virus that got caught and amplified just because of sickle cell.”
He spent most of his early childhood in and out of Children’s Hospital in St. Paul.
“The early experiences with sickle cell were definitely unpleasant,” Breeze said. “It was hospital trips every other month.”
He said his mom was balancing parenting for her child in the hospital and keeping her job as a social worker, which they relied on financially and for health insurance.
Sickle cell disease is one of the diseases with high utilization rates, meaning it has high hospitalization rates and associated costs, said Dr. Alexander Boucher, a provider at M Health Fairview and assistant professor at the University of Minnesota.
“That really takes a toll. It takes a toll on a family. It takes a toll on their pocket. You combine with that the fact that, at least in the United States, those with sickle cell disease are predominantly Black, African American … that brings with it the structural racism that’s built into the health care system and our everyday environment,” Boucher said.
The most difficult period for patients is often young adulthood – which research shows has the highest window of early mortality and highest numbers of hospital stays. As a young adult now, Breeze feels he has a handle on what to do when in crisis.
After a painful episode in 2019, he received three blood transfusions and an injection of monoclonal antibodies, which he says has made his symptoms less severe.
Impacting the day-to-day
Breeze remembers looking around for jobs after graduating and thinking of how he’d tell potential employers about sickle cell. The unpredictability of the disease often held him back from opportunities because employers would think he was unreliable.
“If somebody had to depend on you to come in for a job, you just want to go into it with the mindset that you’ll be able to perform. If you don’t make it known that you have sickle cell at the beginning, then suddenly saying it seems like an excuse. And if you say that ‘I have sickle cell’ at the beginning of whatever obligation you get into, it seems like, ‘I might not be able to depend on this person all the time,'” Breeze said. “I’ve had it happen a few times where I might have lost an opportunity or might not have been able to use an opportunity to the fullest because of mentioning my sickle cell.”
He’s self-employed but works with organizations that understand how the disease affects him. While transitioning into a work environment has been relatively smooth, he wishes his time in school would’ve been the same.
“Online learning or distance learning was not a thing back when I was still going to school, and I wish it was,” Breeze said. “I couldn’t help but think, ‘Where was this when I had crises?’ Why did it seem like it almost had to depend on the world ending to finally have stuff like this available?”
Implicit biases
Sometimes, when patients go into the emergency department during a pain crisis they’re met with implicit biases that affect their care. Black patients are less likely to be prescribed opioids compared to white patients, Burroughs said.
“They receive treatment like they are drug addicts because they come in needing pain medication that sometimes people can get addicted to,” Burroughs said. “A lot of times, if Black and brown people come asking for these drugs, some of them are treated like addicts. They’re not treated with respect and dignity.”
There are also funding disparities for research on sickle cell compared to other pediatric diseases. Cystic fibrosis, for example, primarily affects white people and less than half of the numbers affected by sickle cell disease in the U.S., but received 3.5 times more funding.
In the Twin Cities, Boucher says only two of the six main systems (M Health Fairview and Hennepin Healthcare) care for adults with sickle cell disease. That could be attributed to the high government pay insurance rates of the disease, he said.
“We have a health inequity issue right here in our backyard,” Boucher said. “Our numbers are about 81% government pay insurance, and that’s not good reimbursement when it comes down to it. If systems are intent on monetary gain and reducing high utilization, sickle cell disease is not that disease.”
Boucher has patients who come all the way from Mankato, Duluth and some in western Wisconsin, due to the poor care options at other health systems, he said.
Solutions
The only known cure for sickle cell disease is a blood or marrow transplant, which takes healthy stem cells from a donor and puts them into someone else.
Be The Match, an organization that specializes in helping people get transplants, has started a program aimed at addressing the barriers that individuals living with sickle cell disease and their families may face when considering curative treatment options.
“We want to remove some of the barriers to getting to and through transplants,” said Karla Dawson, the associate program manager for health equity at Be The Match. “There’s a lot of financial considerations involved with it. There are some mental health concerns; you need to have good social support.”
Be The Match sends people Warrior Packages that educate families on transplants, and invites them to reach out for financial and mental health support. As of now, families can apply for $2,000 in funding to help cover some of the transplant costs. But that is a drop in the bucket. A transplant costs around $1 million, and government-pay insurance may cover very little of that. For gene therapy, the proposed cost, once approved, is expected to be $3 million according to Boucher.
Transplants have their risks, however, Boucher said. While it may cure sickle cell disease, there’s a chance of getting other chronic lifelong health conditions because of the change in immune systems between the patient and donor.
Gene therapy, on the other hand, is more successful in leading to healthier outcomes because the blood comes from the patient. But right now, gene therapy only applies to a small subset of patients, about 15% of M Health Fairview’s sickle cell patients, Boucher said.
“The curative therapy options are not a panacea because, as of right now, there’s a limited subset of patients who will be able to meet the criteria, and that’s not even including financing for it,” Boucher said. “You have to have severe to moderate disease, meaning at least a couple of emergency department visits to meet that.”
M Health Fairview has been able to reduce the number of hospital stays among its patient base, Boucher said. From 2019 to 2021, M Health Fairview’s emergency department’s re-admission rate for sickle cell patients was around 1.6%. Now, that’s down to 0.4%.
Organizations like the Red Cross and Be The Match are working to lessen the racial gap in blood donations – to help people who are managing the symptoms through blood transfusions.
This year, Children’s Hospital is hosting its annual Star Gala, and funds from that will go toward treating cancer and blood disorders like sickle cell.
In my world, and it is a small one and there are others out there, I would talk to my legislator. He or she is available. The number is in the book. You can meet your legislator in the district, or in his office at the capitol. You can call him off the floor. You can reach out to your neighbors and they can reach out to their legislatos.
The thing to know about political people is that they are both busy and stupid. If you don’t tell them things, there is a real good chance they don’t know those things.
Yet, some would claim that there are no genetic determinants of race (watch the recent NASEM video introduction of their report ‘Advancing Antiracism, Diversity, Equity and Inclusion in STEMM’) – that the science is just a “social construction”. Thus, one should ignore any phenotypic characteristics that might suggest it is important to test for the presence of the gene for sickle cell disease, or any other condition that may be more prevalent in those of African descent.