By Esther Benenson

It’s known as a “disparities disease.” For generations, sickle cell disease (SCD) — a genetic blood disorder that in the United States predominantly affects African Americans, has been perennially at the short end of the stick in terms of research dollars and innovative care.

Scientists believe the sickle cell gene arose in Africa as a means of protecting humans against malaria. As a result, many people who have sickle cell disease are of African descent. As authors of a New England Journal of Medicine opinion piece stated in November 2020, because many of these individuals with African ancestry are Black, the majority of individuals with sickle cell face the challenges not only of sickle cell disease but also of structural racism in America.

Unlike many institutions, VCU Health didn’t turn a blind eye to the needs of this community. Since 1972, VCU Health has held a leadership role when it comes to treating, funding and researching SCD.

As part of its mission to serve everyone, including the historically underserved, and to make a difference in their lives, the VCU Health sickle cell program created its Adult Sickle Cell Medical Home in 2018 to address a steady increase in emergency department visits and hospital admissions among sickle cell patients. The idea was to build a home base for underserved patients where they could receive the clinical, emotional and social support they need to manage their condition.

It’s a holistic approach that differs significantly from the traditional path of merely pain management.

“I liken the difference to slithering along on a flat plane versus taking off, soaring to the sky,” said Wally Smith, M.D., the Florence Neal Cooper Smith Professor of Sickle Cell Disease at VCU School of Medicine and medical director of the adult sickle cell program at VCU Health, who came up with the idea of a medical home for SCD patients. “If you just give them opioids and they go away and then they come back, and you give them opioids and they go away and they come back — if that’s all you’re doing, you’re actually crippling the patient. You’re not helping … You need social, psychological, educational and vocational resources to come alongside the patient.”

When patients have the resources they need take care of themselves, they don’t have to come to the doctor so much, go to the emergency department so much, or be hospitalized so much, Smith said. This is better for the patient in terms of pain management and getting on with their lives and the health care system in terms of cost and resources.

A home for all VCU Health SCD patients

As part of its many services, the Adult Sickle Cell Medical Home offers five sickle cell patients in need the opportunity to live on the downtown MCV campus in their own small apartment in a shared historic home. This housing component of the medical home was made available in collaboration with Virginia Supportive Housing. 

Kendrice “Kenny” Lane is one of these five sickle cell patients who reside in the home, which accommodates 10 patients total with a variety of medical conditions. To Kenny, 33, the house is his first real shot at independence.

“It’s a wonderful feeling,” Kenny said. “This is my first place being on my own. I love it.”

Known as the Clay House, the home provides Kenny and other sickle cell residents a team of specialists dedicated to their clinical, emotional and financial needs. These services are also available to nonresident patients.

“These are genuinely ill people through no fault of their own, and they have not been treated well by society or the health care system,” said Shirley Johnson, patient navigators and social workers who help sickle cell inpatients and outpatients manage their day-to-day challenges.

“We are very hands-on,” said patient navigator Marla Brannon. “If you’re in the hospital, I’m coming to see you. If you’re in the emergency department or you need medication, you can call me."

Patient navigators serve as intermediaries between the patients and clinical, social and financial resources.

“We do three-way calls because some people don’t know how to navigate the system,” Brannon said. ”You need to call Medicaid, you need to call social services, you need to call the drug company. We will do a three-way call to kind of walk you through that process, with the hopes of one day, you’ll be able to call yourself. We’re basically teaching some patients how to fly on their own.”

Relationships, community, stability

For those who live there, Clay House provides the stability they need to take charge of their lives.

“Before I moved into Clay House, I had so much drama,” Kenny said. “I was depressed. I was suicidal.”

Under Brannon’s tutelage, Kenny has been learning to handle the social challenges he’s encountered throughout his life — whether it’s people taking advantage of his good nature and stealing from him, or jobs he’s lost due to pain or hospitalization.

“We build a relationship, a working relationship,” Brannon said. “Oftentimes patients call me just to talk.  That’s OK. They may be upset with something that the doctor may have said or did, and they’ll call and have a vent session. I’ve been hung up on, I’ve been cursed at — but you can’t take it personally because you have to understand that when you’re in pain, you’re frustrated, you’re irritated, you want results. And results don’t always come as fast as you may want. I listen. I try to calm patients down, offer some solutions — this is what I may be able to help you with, come up with some alternatives. It’s about building trust.”

“She’s my protector,” Kenny said of Brannon. “She protects, but at the same time she lets me learn on my own. I’m growing every day.”

No longer feeling overwhelmed, Kenny greets each day with a positive attitude. “Every day I tell myself, ‘Kenny, you’re blessed. Every day that you wake up, you’re blessed. Yes, you have sickle cell, but you’re blessed. You’re not letting the sickle cell defeat you. You’re defeating it.’”

Medical home support leads to healthier lives

The Adult Sickle Cell Medical Home is noteworthy for its effectiveness. Among the entire VCU Health adult SCD population — those residing in the house and those who aren’t — the initiative managed to reduce the number of inpatient days among SCD patients by 1,096 in 2019. Additionally, the readmission rate dropped 10%.

But the proof is not just in the numbers. The quality of life for these patients increases when the whole team works together to stabilize housing, ensure ideal care is adhered to, and potential crises are averted.

“I didn’t realize we would see the results we have so quickly,” Johnson said. “We still have work to do, but it has been a very rewarding team effort when it comes to improving the quality of life for people who too often have had no one in their corner.”

“I love it here,” Kenny said. “I’m stress-free. No more depression. I’m very happy now.”

Paul Brockwell Jr. of the MCV Foundation contributed to this article. For Brockwell's complete article on sickle cell disease, visit “Orphans in Need,” in NEXT Magazine.

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