Sickle Cell Program Going Strong

By Ben Boulden

Sickle-Cooney

William Cooney has been a sickle cell patient of UAMS for more than 60 years.

Through transformations inside and outside of UAMS, including moving the hospital from McAlmont Street to today’s campus in 1956, he remains confident in the quality of care he receives.

The UAMS Adult Sickle Cell Clinical Program is about to demonstrate the same continuity of care for all its patients as it completes its own leadership transition. Its new co-directors, Megan Davis, M.D., and Pooja Motwani, M.D., recently succeeded Robin Devan, M.D., the program’s founding director.

Motwani and Davis bring to their jobs experience ranging from research and academics to emergency care and hematology. Their diverse backgrounds have equipped them to provide excellent care to long-standing patients like Cooney and new adult patients like Taylor Jones.

Jones, 22, a junior at Arkansas Tech University in Russellville who grew up in Crossett, has received sickle cell care at Arkansas Children’s Hospital (ACH) since she was an infant. Her care shifted to the adult clinical program at UAMS when she reached 21.

“The transition has been good,” Jones said. “I was a little nervous at first because I had been at ACH my whole life. The doctor and nurses have been really supportive.”

As young patients grow into adulthood, they are transferred to the adult program gradually and in an organized fashion. The UAMS team meets with the pediatric sickle cell team at ACH to identify patients who are nearing adulthood. The social worker meets with these patients to prepare them for the adult program and to facilitate scheduling and records transfers.

Sickle-Tayler

Taylor Jones, a student at Arkansas Tech University in Russellville, a year ago transitioned from sickle cell care at Arkansas Children’s Hospital to UAMS.

Davis also brings a skill set to help pediatric patients move into the adult program. She was a chief resident in internal medicine and pediatrics at UAMS, completing her residency in 2014. From 2011 to 2013, she served on the UAMS Pediatric Continuity Clinic Committee. More recently she completed a fellowship in hospice and palliative care.

“With a professional background that includes caring for children and caring for adults, I want to keep using my experience to help our younger patients make the transition from pediatric sickle cell programs to the adult program here at UAMS,” Davis said.

Because of episodes of extreme pain associated with sickle cell disease, patients sometimes end up in hospital Emergency Departments seeking relief. Davis knows that side of things, too.

For several years, she also worked as an EMT and paramedic in Texas and Oklahoma, work that included patient advocacy, public education and directing patient care and documentation. She is leading the palliative care part of the clinic, focusing on relieving symptoms, pain and stress.

Although UAMS and its physicians have a long history of treating sickle cell disease, the Adult Sickle Cell Clinical Program launched just two and a half years ago in January 2014. The effort to create it began with the Arkansas Legislative Task Force on Sickle Cell Disease, which outlined in a report the problems causing disparity in health care to sickle cell patients. The Arkansas Legislature provided funding for UAMS to develop the program.

The UAMS Division of Hematology/Oncology then partnered with the Center for Distance Health to create a statewide system of support for patients with the disease and the physicians who care for them.

Motwani is at the center of that effort and brings to the program expertise in hematology. She has written book chapters and has been the principal author or co-author of several published medical journal articles drawing on her collaboration in hematological and oncological research. She also performs bone marrow transplants and treats patients with various types of hematological disorders. She is the supervisor of the bone marrow procurement clinic at UAMS and trains and supervises new doctors and nurse practitioners.

Motwani is the principal investigator on several clinical trials at UAMS and leads the way in clinical research in hematological disorders.

Together she and Davis oversee a variety of services and initiatives that are part of the Adult Sickle Cell Clinical Program. The program offers a patient support group that meets monthly at the UAMS Winthrop P. Rockefeller Cancer Institute. It now includes patients in other parts of the state via a new, live virtual connection option a patient can make through a computer or an app on a smart phone or electronic tablet.

To provide around-the-clock support for patients and their health care providers, the ANGELS Call Center at UAMS also hosts a sickle cell hotline. Acute medical issues are triaged by the Call Center’s registered nurse, who gives advice on what level of care needed, including sending a patient to an emergency department, scheduling an appointment or providing self-care instruction.

Health care providers can also call the hotline to speak to a specialist to discuss best care practices for sickle cell patients.

Besides educating patients, the sickle cell program engages in a robust effort in person and through distance education to teach physicians and other health care providers about the disease. Both Motwani and Davis have strong backgrounds in academic medicine. Motwani is board certified in internal medicine, oncology and hematology. She will oversee the hematology fellows who will see patients in clinic each week.

“Our skill sets, Dr. Motwani’s and my own, complement each other well,” Davis said. “Both of us are eager to use our skills as we lead the Adult Sickle Cell Clinical Program forward and ensure it keeps improving the health and lives of people with sickle cell disease.”

They share a commitment to patient care and medical education that has a long tradition at UAMS. Patients like Cooney have seen that over the decades and continue to value it.

After 63 years of sickle cell disease, a stroke, a heart attack and two severe cases of pneumonia, he has an active life. He credits UAMS and, more recently, the UAMS Adult Sickle Cell Clinical Program for helping him stay that way.

“Sometimes people try to get me to go to other hospitals, but I tell them, ‘I’ve been going to UAMS my whole life, and I’m not changing,’” Cooney said. “I like the treatment I get at UAMS and the clinical program.”