Sitting before Mitzi Glass is a young man about to step into what some call “the abyss.”

Twenty-one-year-old Alvin Bailey has sickle cell disease. He’s received treatment for the blood disorder since infancy at Children’s Hospital of The King’s Daughters in Norfolk, and sports a cartoon Band-Aid on his arm to prove it. But on this January day, he’s “aging out” of the pediatric system.

He’ll now have to navigate the disability and medical insurance systems. Try to keep flare-ups of pain from derailing jobs or college classes. And pay for medications that used to be picked up by government insurance, which he’s had throughout childhood but will now lose.

The abyss is the adult world; Glass is his guide.

She’s Virginia’s first sickle cell transition coordinator, a state-funded position created to help the growing number of young adults living with sickle cell, a genetic disorder in which crescent-shaped blood cells clog vessels.

The state estimates that 400 young people – a quarter of them in Hampton Roads – will need to make the same transition during the next five years. The number has soared over the decades.

Life expectancy for people with sickle cell has more than doubled, from the early 20s to the mid-40s, since the 1970s because of better treatment and newborn screening.

That’s the good news. The frustration is that the adult world of medicine is not quite ready for the survivors.

 

While the system gears up to provide the more comprehensive care these patients need, some young adults fall through the cracks.

Instead of keeping up with appointments and medications, they rely on expensive emergency care when crippling pain strikes. Many are too healthy to qualify for federal disability benefits but too sick to maintain a full-time job with health insurance.

That means they’re more likely to go off medications that have kept them healthy. When these patients hit their young-adult years, complications that might have killed past generations in childhood begin taking a toll on their hearts, their kidneys and their bones – particularly if they stop getting proper medical care.

Glass, a licensed clinical social worker, has spent the past five months helping CHKD sickle cell patients 17 to 21 years old build a bridge to adult care.

Her role here comes easily because she worked at CHKD for more than a decade before returning in this state pilot program.

When patients like Bailey approach their 21st birthdays, Glass runs them through a set of questions. She knows the answers, but needs to be sure they do.

What kind of sickle cell do you have?

What are your pain episodes like?

What kind of medications do you take? Why do you need them?

When was the last time you were in the hospital? For how long?

Bailey has all the answers.

“Alvin, how would you feel if today were your last appointment here?”

“Good,” Bailey says. “I’m ready.”

He professes a bit of nervousness out of Glass’ earshot.

“I’ve been coming here all my life,” says Bailey, who lives in Smithfield. “I don’t even know who treats sickle cell.”

 

Luckily, Glass does.

She walks Bailey and his mother, Sherry, who also has sickle cell, down a sidewalk that runs between CHKD and Eastern Virginia Medical School.

In 2003, an EVMS doctor teamed up with Sentara Healthcare officials to open a sickle cell clinic that treats the wide array of health problems “sicklers” wrestle with and also provides health services – such as intravenous fluids and pain medicine – in their homes.

The treatment of adult sickle cell involves more than just a blood specialist. Years of compromised circulation can result in skin infections, eye problems, heart conditions, bone loss, breathing issues. Problems that most people might experience in old age can hit people with sickle cell in their 30s and 40s.

As adults, sickle cell patients are also more likely to be viewed as drug addicts because of the high doses needed to control their chronic pain.

The pain episodes might prevent people from working full time, which can leave them without health insurance.

Barbera Radford coordinates the sickle cell clinic at EVMS, so Glass makes sure she links Bailey up with her.

Radford, in turn, sits down with Bailey and shows him Web sites that offer discount drugs. He’s been turned down twice for disability, so she also asks him to bring in his denial letters to see whether she can help him appeal or find other programs.

For years, the sickle cell patients at CHKD have gotten everything they need in one hospital, from kidney checkups to blood tests to social work advice. When they graduate to the adult world, the network of health care providers is more spread out, which often makes transportation a problem.

Radford makes sure Bailey schedules an appointment with one of the clinic’s doctors and hands him a card with some telephone numbers.

“Call 8 to 5 for any routine questions,” she tells him. “But if there’s an emergency and you have to go to the emergency room, tell them to call this pager number.”

 

The growing number of sickle cell survivors in Virginia is partly because of screening of babies that began in 1989. Starting treatment earlier meant healthier bodies. Improved medications also played a role.

The state health department began providing funds in 1995 for a network of pediatric clinics across the state to bolster care for all the newly identified sickle cell patients. Besides the clinic at CHKD, there are three others, in Richmond, Charlottesville and Annandale.

Almost half the infants who screen positive for sickle cell in Virginia live in Hampton Roads, one reason CHKD was chosen to kick off the pilot program to provide transition services for children who are graduating into adult medical care. Jene Radcliffe-Shipman, manager of the state’s sickle cell program, said the state hopes to replicate Glass’ position in other areas.

Dr. William Owen, a pediatric blood disease specialist at CHKD, applied to the state for the grant. When he first started working at the hospital 14 years ago, it served about 200 sickle cell patients. That number has grown to 500. He’s seen young people struggle as they near discharge age.

“It’s difficult enough to be an adolescent and to have a chronic disease,” he said.

The disease is invisible from the outside, so the pain and fatigue are hard for others to understand.

Besides addressing patients’ medical needs, Glass helps with the emotional side. Earlier this month, she brought together the young adults and their families so they could meet one another and also meet health care providers in the field.

Once they transfer into the adult world, she keeps up with them.

“It’s helpful to have someone you know with you, to have someone who will say, 'I’ve got your back.’”

 

Tarry Pulliam, a 21-year-old college student with sickle cell, remembers the anxiety he felt when he left CHKD last year.

“I was the biggest kid there, so I knew it had to happen sooner or later,” he said. “But I still felt like I didn’t want to leave.”

The first doctor he contacted outside CHKD told him he hoped Pulliam wouldn’t turn into a drug addict.

The comment upset Pulliam so much that he quit going to the doctor and focused on school and work instead of lining up medical care.

Earlier this year, Glass called and left a message for Pulliam, who didn’t return her call. Then Glass called his mother, Rita Pulliam, who persuaded her son to attend one of Glass’ meetings. “She did not give up on him,” Rita Pulliam said.

Tarry Pulliam also took Glass’ advice to make an appointment at EVMS.

He said he feels healthier as a young adult than he did when he was younger – so much so that he is pursuing a nursing degree at Norfolk State University. He wants to help others in the same way CHKD staff helped him endure the pain of sickle cell.

Still, he feels under pressure to finish college before he turns 23, when he will no longer qualify for his parents’ medical insurance. Also, managing his class and work schedule during pain episodes can be tricky.

He’s glad to have Glass to turn to for help.

“She’s always told me I could have a regular life like anyone else,” Pulliam said. “Sickle cell is something that can be handled if you take care of yourself and stay on the right path.”

 

Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com [1]