Sept. 18, 2014 | In the nine months since it first opened, the University of Arkansas for Medical Sciences (UAMS) adult sickle cell clinic has become an invaluable resource for nearly 100 patients living with the disease, some of whom had few options beyond the emergency room prior to the clinic’s opening.

One of those, Little Rock’s Jarques Smith, 24, who was diagnosed at birth, said discovering the clinic has helped provide a much-welcomed sense of stability. When a primary care doctor told him at age 12 that he didn’t have sickle cell, he lost his insurance and managing the pain became hectic.

“I couldn’t go to a primary care physician or clinic for my treatment, so I did go to the emergency room quite often,” he said. The process was time consuming — waiting to be seen, getting fluid injections, receiving pain medication. And it often meant limited relief.

“Depending on how serious you are, they may keep you or let you go for the night. Usually when they let me go for the night, I’d end up right back in the ER because of the pain. It’s just like a cycle; you can’t make it go away.”

That made it hard to hold a job or be a student.

“There’ve been classes that I failed, jobs that I lost, because of crisis pain,” Smith said. “I’ve had jobs and had to go into the emergency room, and I come back and I didn’t have a job anymore. A lot of people overlook sickle cell because not a lot of people have it, and people don’t talk about it as well. There have been doctors that came into the room and just swore up and down that I wasn’t in pain, that I was just there for the medicine.”

That started to change in the fall of 2013 when Smith met Robin Devan, M.D., on a trip to the UAMS emergency room.

“Once I came across Dr. Devan, it was better. She was a sickle cell doctor. She knew patients that had sickle cell. She told me that she really did understand how I was feeling and what I was going through, which I never had with all the doctors that I came across in the ER. Nobody ever understood the pain of a sickle cell crisis.”

Devan told Smith about the formation of the clinic, which was the result of grassroots support organizations seeking legislative funding over a number of years to solve a problem many people simply didn’t know about.

“I came on board at UAMS in August of 2012 and at that time the state Legislature had given UAMS some money to start a clinic. That’s all we knew. So I developed a plan in conjunction with members of the Hematology/Oncology Division here at UAMS and our Center for Distance Health.”

The plan included a multidisciplinary clinic for adults living with the disease. It would offer not only treatment – infusions and medications without having to resort to the emergency room – but also support groups and a help line not just for patients, but their families and even their doctors. While Arkansas Children’s Hospital has for a long time had a strong pediatric program for sickle cell patients, Devan said, there’s been no organized medical resource for adults throughout Arkansas.

“In the past, patients were sent off to a primary care provider as an adult with this disease. But it’s a rare disease. Primary care providers out in rural Arkansas might not take care of but one patient with this disease. So it puts a burden on that provider,” she said. Additionally, patients might change jobs and move, losing contact with their provider. Usually that results in frequent trips to the emergency room.

The clinic, which began in January 2014, and its associated programs aren’t meant to replace primary care providers, Devan said, but add “another layer of support for patients.” Sometimes that’s immediate care; other times it’s just a listening ear via the help line at 1-855-SIC-CELL (742-2355).

“Between calling Stella Bowers, our R.N., directly or calling the call center, we get about 150 calls a month, and that’s 150 calls that used to never happen per month,” Devan said.

“That’s one of the things that I’m most proud of, that we have this opportunity as a sickle cell team to educate the patients,” Devan continued. Whether it’s about smoking cessation, avoiding inflammatory foods or just avoiding general life stress, conversations with patients have gone a long way.

“Stella is a wonderful ear on the end of the line, and a lot of patients have come to call her for things other than their sickle cell pain.”

For Smith, the programs have allowed him to stay active. In addition to being on track to graduate with a business degree next year, he works for a nonprofit that engages at-risk teen boys in service projects and provides mentoring and support.

“Everything’s just been a learning experience to me, it’s all new,” Smith said. “It seems like it’s just happened out of the blue, but I’m grateful for it.”