By Genoa Barrow | OBSERVER Senior Staff Writer
African Americans deal with a myriad of ills simply trying to survive in the skin they’re in. Add sickle cell to the mix and things can get inherently more complicated.
Passed from parents to child, sickle cell is a condition that impacts many, but is still largely misunderstood. Dr. Marsha J. Treadwell, a leader in care for sickle cell patients in Oakland, says a recent focus on health equity has provided an opportunity to advocate for those living with the disease. Dr. Treadwell brings decades of expertise to UCSF Benioff Children’s Hospital Oakland’s division of hematology. She directs the Sickle Cell Care Coordination Initiative in Northern California, is regional director of the Pacific Sickle Cell Regional Collaborative and serves as co-chair of the diversity, equity and inclusion committee at UCSF Benioff Children’s Hospitals.
Because it largely impacts Black people, sickle cell hasn’t gotten all the attention it deserved, Dr. Treadwell said. Other diseases that primarily impact white people, such as cystic fibrosis and hemophilia, are given more attention, more research, more funding and more treatments.
“Structural racism is absolutely a problem in this country,” Dr. Treadwell said.
“Our population here in Oakland is over 80% Black, African American and 12% Hispanic, Latinx. We also have a large proportion of people who identify as mixed race,” she continued. “Since fibrosis and hemophilia have affected primarily whites and persistently, consistently, it’s demonstrated that there is federal funding, as well as philanthropic funding, that’s of a magnitude of 100 times more given, if not over 1,000 times more given, to these conditions compared to sickle cell disease.
“Then what happens is we don’t have a registry so we can track where people are getting care and we don’t have disease-modifying therapies, so people are sick, and sicker than they need to be.”
Even those in the medical profession haven’t always had all the answers.
“We don’t have the awareness among providers of the importance of the disease, so then our adults with sickle cell disease, a Black or brown person goes into the emergency room in really severe pain and is denied treatment, and is even called a drug addict, a drug seeker, as opposed to a person seeking relief from their pain,” Dr. Treadwell said.
Sickle cell disease is complex.
“Any organ system can be affected – the brain, the eyes, the kidneys, the lungs,” Dr. Treadwell explained. “But there was a thought in the past where providers thought it was ‘just about pain’ and even thinking that pain is insignificant is a problem on the one hand, but on the other hand, this lack of understanding that this is a complex disease really has been a part of the medical community. There just haven’t been enough resources put into sickle cell disease in the history of the country.”
She points to the Sickle Cell Anemia Control Act of 1972, legislation in the 2000s and most recently the Sickle Cell Treatment Act introduced in Congress in September by Black California lawmaker Barbara Lee and others as progress toward correcting past inequities.
The Work Is Plenty
Dr. Treadwell came to Children’s Hospital more than 25 years ago as a health psychologist after graduate school at the University of Washington.
“I met people with sickle cell disease, young people, adolescents at the time, who were really dealing with tremendous pain and then, sometimes, the stigma in the community and then the typical challenges everyone has – divorce of their parents or school problems, or whatever. I really started working with them, teaching them about coping with pain and with other aspects of their lives that might be challenging.”
She was amazed by the strength displayed by these young people.
“I just really was drawn to continue to work with the population and really learn from them about where this resilience comes from, so I could teach others about that,” she said.
“The other thing that was important to me and the reason why I came here to Oakland is social justice. Sickle cell disease has been so characterized by these disparities and so this was my opportunity to do work with the African American population focused on social justice issues. Focus on something that’s not only complex medically, but complex psychologically, as people are dealing with pain and a disease that could, in those days, really kill them early. That’s why I started working with sickle cell.”
Through the years, Dr. Treadwell’s role grew. She became a part of the sickle cell center and eventually ran its community education component.
“Since then, I’ve really evolved into doing health services research, implementation science research. What that means is that my work really looks at moving discoveries into practice and implementing best practices,” she said.
Dr. Treadwell creates systems that help advocate for patients.
“They are discriminated against, disbelieved in the health care system when they go to the emergency room for pain, so we created a standardized pain plan that will go in the patient’s electronic health record so that the provider would know exactly how to treat them. It would cut down on the provider not believing them about what their pain treatment would be,” Dr. Treadwell said.
“We did that project in eight sites around the country. We want it to be rolled out around the country, but right now it’s a research project looking at how to improve pain management.”
Dr. Treadwell was also among leaders who wrote a sickle cell action plan in 2018.
“I got a small grant and brought together 50 people from around the state – clinicians, researchers, epidemiologists, people with sickle cell disease, community-based organizations, family members – and we met together and deliberated on what are the needs of people with sickle cell disease in the state of California. We really identified that adults with sickle cell disease really get very poor care and that we needed to focus on that population specifically.”
That led to another grant that went to establishing 11 new adult sickle cell clinics, including one run by the UC Davis Medical Center.
“That grant started in 2019 and we have one more year of the grant,” Dr. Treadwell said. “I just hope through advocacy that we’ll be able to get more funding.”
Through Blood and Marrow, its stem cell transplant program, Children’s Hospital Oakland has become a leader in gene therapy research. Dr. Treadwell plays a critical role.
“Our program here in Oakland is focused on studying gene editing to correct the situation that causes sickle cell disease and all of its complications,” she said.
The mention of altering genes is often met with a side eye and some definite pushback.
“People are hesitant,” Dr. Treadwell admitted. “And it’s new and it’s still under study. We’re working on ways to educate people about what it really is and what it is not.
The study was launched in 2021.
“This is new – it’s research, we’re still trying it,” said Lorna Fernandes, a spokesperson for UCSF Benioff Children’s Hospitals.
“However, what makes this one somewhat more promising than other gene therapies is that it uses the patient’s own stem cells rather than a donor or any others, so there’s less chance of, for instance, rejection. That said, it’s still quite a grueling process,” Fernandes continued.
Up For The Challenge
UCSF Benioff Children’s Hospital Oakland is California’s oldest sickle cell center.
“We see people from birth and our oldest patients are in their 80s. We have a team that is led by a pediatric hematologist, who takes care of the kids and then we have an adult team that’s led by an internist that takes care of the adults,” Dr. Treadwell said. “It helps a lot because the teams come together and can really talk about how different treatments in the pediatric years can impact how the person really does as an adult.”
Dr. Treadwell and others also are working to establish a UCSF “Sickle Cell Center of Excellence” that will have a presence in San Francisco, Fresno and Oakland, which is already an international leader in sickle cell research and clinical care.
“Our center wrote the guidelines for sickle cell care that are being rolled out to be used across the state,” Dr. Treadwell said. “Our center is also educating providers. That’s another big challenge in sickle cell adult care – that there aren’t knowledgeable providers who are also willing to take care of people with sickle cell disease. There haven’t been around the country.
“That’s one reason why the transition is so difficult for people because it’s hard for them to find an adult provider. So we provide training to nurses, to physicians, to advanced practice providers, social workers, and psychologists. We provide broad training to people to improve their ability to take care of people with sickle cell disease. It’s a very complex disease.”
Weeklong training for providers isn’t enough to provide the level of care patients need, Dr. Treadwell said. Also problematic is the fact that many African Americans don’t have a primary care physician they go to regularly, who knows them outside of a computerized file. Many still rely on emergency rooms as their primary caregivers.
Access to specialists and continuity of care are crucial, Dr. Treadwell said.
“We see young people who haven’t gotten good care in their 40s, who die and they might die of kidney failure, but if they had had that sickle cell specialist monitoring them, at least once a year, if not a couple of times a year, and then they have that primary care doctor who was checking out other things and making sure those things weren’t going on, then that person, can [advance in age].
People can live long lives and good quality lives, but they really need that good care. And the thing about the emergency room care is this whole bias and stigma that can come in, but also they aren’t trained to recognize the complexities of sickle cell disease. Again, that’s where you need that specialist.”
Hearing from patients and others who live with sickle cell drives home the need for Dr. Treadwell.
“There was one young woman that I was talking to, just a beautiful, brave and vivacious girl. I said, ‘What does it feel like?’ She said, ‘Well, it’s actually like having glass go through your veins, then someone’s taking a hammer and smashing your arms.’ Can you imagine having to go through that and then be in the emergency room, and they’re like, ‘You’re just a druggie, you want a fix?’
“It is important to note that the reason why Oakland decided to continue into adulthood care is because there was nowhere else really where adults in the region could go for treatment. We just realized these kids we’ve been treating since babies, they still need to be respected and treated and we know what they need.”
There’s a “real focus” on health equity happening now, Dr. Treadwell said. She’s optimistic it will bring change.
“Because sickle cell disease represents so much inequity, in so many conversations now, the conversation is if your hospital or your institution is going to show that you’re going to provide equitable care, then sickle cell disease is a place to start. That’s one thing that’s happening, I think the social context has changed.
“But then the other thing is that, at the same time people who do have power and privilege have come behind sickle cell disease to support the discovery and implementation of disease-modifying therapies and curative therapies, and with that attention is resurging for sickle cell disease.”
Dr. Treadwell hasn’t seen this much attention paid to the disease since she started working in the field more than two decades ago.
“I feel this is the time for us as committed providers, researchers, committee members who are focused on sickle cell disease to really come together and make things happen.”
This article is part of a series that highlights sickle cell’s impact on the African American community and how medical professionals are working to remove barriers to care and ensure that patients get the treatment they deserve.