“I don’t think people understand how difficult living with sickle cell is,” says Porscha Burks. Burks is one of approximately 1,000 Milwaukee residents who suffer from sickle cell disease, which disproportionately affects African Americans. (Photo by Trisha Young)
By Trisha Young
This story was originally published by Milwaukee Neighborhood News Service, where you can find other stories reporting on fifteen city neighborhoods in Milwaukee. Visit milwaukeenns.org.
Porscha Burks lives a normal life in many ways. She is the mother to an 8-year-old boy and works as a patient service representative at a North Side clinic.
However, there is one thing that sets her apart from the average person.
Burks has been living with sickle cell disease her entire life.
“I don’t think people understand how difficult living with sickle cell is,” she said.
For Black patients, like Burks, there are many barriers to sickle cell treatment, the biggest among them being lack of access to quality health care and limited blood donations, experts say.
Sickle cell disease occurs when red blood cells bend into a crescent or sickle shape instead of their normal round shape, blocking blood flow and preventing oxygen from circulating throughout the body. This leads to frequent and severe pain throughout a person’s life.
For Burks, living with sickle cell disease has meant daily treatments with pain medication and monthly blood transfusions.
Even with those treatments, she said she still experiences chronic pain, which sometimes lands her in the emergency room.
“Pain and fatigue is an everyday thing,” Burks said. “It’s difficult mentally and physically.”
Approximately 100,000 Americans are living with sickle cell disease, according to the Centers for Disease Control and Prevention, or CDC.
Sickle cell disease disproportionately affects the Black community.
The disease occurs in 1 out of every 365 African American births, the CDC reports.
About 95% of people with sickle cell disease in Wisconsin are Black, according to the National Institute of Health, or NIH.
Bridging the gap
Advocates and providers in Milwaukee are trying to bridge that gap and are asking members of the community to help by donating blood, which is integral to much of the treatment of sickle cell.
According to the NIH, only about 5% of blood donations come from Black donors, which can pose problems in providing matched blood to Black recipients.
Patients with sickle cell disease may rely on regular blood transfusions throughout their lifetimes to prevent health consequences such as organ and tissue damage, severe pain and strokes, according to the American Red Cross.
Despite her challenges with sickle cell, Burks said she’s grateful to live in Milwaukee, where there is a strong support system, which includes medical providers who understand the disease.
According to Children’s Wisconsin, Milwaukee is a crucial hub for advancing treatments for sickle cell disease, as it is home to approximately 85% of the 1,200 diagnosed individuals in the state.
For example, Versiti Blood Center of Wisconsin will be opening a blood center on Milwaukee’s North Side, Versiti on King, which will be located on North Dr. Martin Luther King Jr. Drive.
“We’re committed to having a more permanent versus transactional relationship with the Black community,” said Chris Miskel, Versiti’s president and CEO.
Versiti on King will offer job training, social services and assistance with blood donations as well as education about blood donation, diseases and resources.
Barriers to treatment
According to Dr. Prithu Sundd, senior investigator for Versiti Blood Research Institute, “There is a built-in stigma to treating a disease where the majority of patients are Black.”
Sundd said that many clinics may wait longer to give pain treatment to sickle cell patients because of outdated beliefs that African Americans have higher pain tolerances.
One NIH study found that non-white patients in the emergency room are less likely to get pain medicine, wait longer and are less likely to be admitted than white people.
According to another NIH study, lack of quality medical care may make it difficult for Black patients with sickle cell disease to deal with the health-related stigma and racial bias they already face.
While treatments for sickle cell disease are improving and provide hope for better outcomes, Sundd believes there’s still much work to be done.
“In our research, we are trying to find ways that prevent the symptoms from ever happening,” Sundd said.
How to get involved
“We need more African Americans in Milwaukee to donate blood,” Sundd said.
This is because people with African ancestry have better outcomes when receiving blood donations from others with similar ancestry due to genetic similarities.
According to the American Red Cross, 1 in 3 African American blood donors is a match for a patient with sickle cell diease.
Sundd said he recognizes that racial disparities and stigma surrounding health care can discourage Black people from donating blood.
Burk agrees. “We need more education in the community and that means providers need to be doing more outreach work,” she said.
Meanwhile, Burks has high hopes about the future for those who live with sickle cell disease.
“This is a disease that can be cured. It’s just a matter of when,” she said.
Where to donate blood
Milwaukee Blood Donation Center, located at 638 N. 18th St. More information here.
American Red Cross Southeast Chapter, located at 2600 W. Wisconsin Ave. Find more locations for blood drives happening near you here.