Topic: Sickle Cell Disease

New Tennessee Center Offers Affordable Care to Sickle Cell Patients

A team of healthcare specialists is working to coordinate care, reduce ER visits, and spread awareness.

June 2012
By Kristina Grifantini

When Dr. Michelle Williams first started practicing pediatrics in Nashville, Tennessee, she noticed that many patients with sickle cell disease stopped receiving primary care treatment once they transitioned to adult care.

Patients with the disease can lead functional lives with consistent medical treatment from primary care physicians and specialists. But without regular care, the genetic blood disorder can cause debilitating pain and lead to early death. Once patients hit adulthood, if they don’t have insurance, says Williams, they often live in pain and rely on emergency room visits when the pain is unbearable.

“One parent with sickle cell disease has two kids with the disease,” says Williams. “The couple brings the children to the doctor and the dad is standing up and you can see he’s in pain. He didn’t have insurance at 20 so he had to quit going to the doctor.”

Now, through Working to Improve Sickle Cell Healthcare (WISCH), a national quality improvement project led by NICHQ, Williams and a team of other doctors in Nashville are addressing those discrepancies. NICHQ instructs teams in quality improvement techniques aimed at reducing patient visits to the ER, helping patients transition from pediatrics to adult care and promoting education in their communities. The Tennessee team—in addition to other improvement efforts—is coordinating a sickle cell resource center that offers affordable and multi-disciplinary care.

By July, the Tennessee team’s new sickle cell resource annex will reside in the Matthew Walker Comprehensive Health Center, where Williams is the health director. There, specialists like hematologists, psychologists and OB-GYN doctors will work together with adult and child primary care doctors to provide comprehensive healthcare to their patients. At the new center, patients like the father with sickle cell disease will be treated for preventative and acute care so they don’t have to rely on ER visits.

“When you can’t get insurance it’s hard to go anywhere except the ER and they’re only getting pain management there and not regular check-ups,” says Williams. “By having the sickle cell team in a single health center which offers affordable care, we can see those that don’t have health insurance and they’re given a holistic approach.”

“We’re literally moving our healthcare team,” says Dr. Michael DeBaun, a professor of pediatrics and the director of Vanderbilt Meharry Sickle Cell Disease Center of Excellence. “We’re moving sickle cell disease specialty outpatient care from the hospital setting—Vanderbilt University Medical Center and Meharry Medical College—to this community health center.”

The establishment of their new sickle cell treatment branch will help children continue to receive care that they need as they transition to adulthood, says DeBaun, who leads the local WISCH team of about 20 healthcare professionals and an advisory board consisting of people who have sickle cell disease. Through the WISCH project, funded by HRSA, the team has been able to gain momentum to establish the multi-disciplinary center. Team members have also been able to educate primary care pediatricians and doctors about sickle cell management and carry out community outreach.

“Sickle Cell Sabbaths”

Aside from offering accessible, coordinated sickle cell treatment at the center, the Tennessee improvement team has also been reaching out to their community to provide education and support. One effort, dubbed “Sickle Cell Sabbaths,” featured awareness-building presentations at 10 local churches explaining sickle cell disease and the importance of blood donations as a source of treatment.

“A year ago, we started meeting with the leadership of the African American churches in town and the American Red Cross and established partnerships to conduct Sickle Cell Sabbath,” says DeBaun. He adds that two to three weeks after the presentations, the team and its partners held blood drives with “a good representation from church members and many first-time donors.”

Other outreach events have included bowling parties for teenagers, a zoo outing for families with sickle cell disease, and a professional retreat to educate specialists, primary care doctors, and emergency room workers about interdisciplinary ways to care for the disease.

At future Sickle Cell Sabbaths and outreach events, the team will present more information on the importance of getting tested for sickle cell trait—a condition where a person can pass on sickle cell disease but might not have any symptoms. If two people with sickle cell trait have children, each child will have a one in four chance of having sickle cell disease and a 50% chance of having the trait.

“We think it’s critical for adults who are at risk at having a child with sickle cell receive sickle cell trait counseling to know their status and so they can make informed decisions about having a child,” says DeBaun.