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Community health worker helps lower barriers in sickle cell treatment

Sharon Johnson is not a physician or scientific researcher. She has never been trained as a nurse. Her most recent prior occupation was as office manager in a dental practice.

Yet colleagues say she's a bundle of compassion, a quick study and a genius at communicating with people of all backgrounds — all qualities that have made her a key player in iHOMES, a Johns Hopkins-based network of health care providers who are dedicated to mobilizing every possible resource in the fight against sickle cell disease.

Johnson, 51, is a community health worker, which is the most commonly used name for professionals who neither diagnose illness nor write prescriptions but act as liaisons between a health care system that strikes many as remote, even intimidating, and the underserved populations it hopes to treat.

People such as Johnson, experts say, are indispensable in the battle against sickle cell, a painful and in many ways complicated disorder that affects African-Americans more often than any other group.

"There are so many barriers to effective treatment of sickle cell, and not all are medical," said Dr. Sophie Lanzkron, founding director of the Sickle Cell Infusion Center for Adults at Johns Hopkins Hospital. "Someone like Sharon, who connects so well with people and has the pulse of the community, can be a critical part of healing."

Medical researchers have long been baffled by sickle cell, a noncontagious, genetically acquired malady that affects the way the DNA creates hemoglobin, the substance that allows red blood cells to carry crucial oxygen from one part of the body to another.

A healthy individual's red blood cells are round and malleable, allowing for passage through the body's tiniest and most byzantine vessels. In sickle cell sufferers, certain otherwise ordinary life conditions — fatigue, dehydration, stress — can turn the cells hard and sickle-shaped, leaving them unable to navigate the twists and turns.

"My tissues literally get starved of oxygen" during these crises, said Carlton Haywood, an assistant professor of hematology at the Johns Hopkins School of Medicine who has had sickle cell since childhood. "I as an individual experience that as severe pain. It can go on for hours, days or weeks at a time."

Sickle cell is rare — about 4,000 people in Maryland have it, about 100,000 across the U.S. — but no less devastating for that. Most who have it miss major stretches of school or work. Sufferers are highly susceptible to diabetes and stroke and have trouble fighting bacterial infections.

Certain vaccines can minimize the threat of illness. One drug, hydroxyurea, appears to reduce the frequency of pain crises. But there is no cure. Sufferers, on average, don't survive their 40s.

iHOMES — the Improving Health Outcomes and Medical Education for Sickle Cell Disease network — can help with the medical side. A Johns Hopkins Medicine initiative, it draws a variety of Maryland caregivers and institutes together, helping to train primary care providers, connect sufferers with physicians and guide teens into adult care, among other services.

But a storm of sociological challenges surrounds the disease. That's where Baltimore native Johnson, one of about 40 community health workers at Hopkins, and the only one at iHOMES, comes in.

Studies show that most sickle cell sufferers live in low-income communities, a fact that leaves many without the financial resources, transportation and child care that make regular follow-up visits possible. A good number have also suffered strokes, which causes cognitive problems.

"Many have trouble navigating the system we have," Lanzkron said.

In addition, about 90 percent of sickle cell patients are African-American, while health care providers in the main are not. Studies show the disparity predicts gaps in communication, understanding and trust, all of which compromise care, said Dr. Chris Gibbons, director of the Urban Health Institute at the Johns Hopkins Bloomberg School of Public Health.

Add in a uniquely tragic twist: during many crises, only potent opioid drugs can relieve the pain, yet sufferers display no observable symptoms.

"Imagine, if you will, that you're in Baltimore City, you're a 20-year-old African-American male and you're telling the ER doctor you're in excruciating pain and you need narcotics, but there's no test that can prove you're in crisis. How do you think that goes? Every patient has horror stories about terrible treatment in the ER," Lanzkron said.

The 4-year-old Infusion Center, the only facility of its kind in Maryland, minimizes that problem. It has made for shorter waiting times for drugs and radically cut hospitalization rates for patients who come to area emergency rooms.

But it's Johnson and her fellow community health workers who add the human touch.

Trained in the basics of sickle cell, the West Baltimore native has a busy but varied schedule. On a typical day, she'll visit a couple of patients in their homes, explaining doctors' directions, checking blood pressure, offering appointment reminders, even sharing stories of her childhood to help establish trust.

Then she'll visit some in the hospital. "I don't stay long, but I'll hold their hand and listen," she says. "I let them know I'll come back soon. That may not decrease the pain, but it might make them feel a bit better inside."

In recent weeks, Johnson, a former Americorps volunteer, has babysat children, restored medication schedules, offered rides, referred patients to drug-rehab programs and shared her insights on patients with grateful hematologists. Her costs are covered by grant from the Health Resources and Services Administration.

"She's the modern equivalent of the old country doctor, but without the medical degree," said Gibbons, who strongly supports increased use of community health workers in an age when doctor visits can be pricier than ever.

Johnson is helping physicians and other health providers bring down barriers a little at a time.

"She works hard, and always has a big smile on her face," Lanzkron said. "That's healthy for everyone."


The Johns Hopkins Sickle Cell Infusion Center is in Room 136 of the Carnegie Building at 601 N. Wolfe St. Interested patients can learn more at, call the Hopkins sickle cell hotline at (443) 717-2198 or email iHOMES at

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