St. Jude Children’s Research Hospital will become the first ever health care organization to receive the Legacy Grant from The Links Inc. The grant is aimed at supporting African Americans by advancing the research of sickle cell disease.
St. Jude was named the fifth recipient of the grant, following the Smithsonian National Museum of African American History & Culture, the National Civil Rights Museum, the United Negro College Fund and the NAACP Legal Defense Fund. The $1 million contribution will go toward programs that aim to improve treatment in the U.S. and globally.
Sickle cell disease is a potentially life-threatening disorder that can cause intense pain, strokes and other severe medical problems. The disease is the most common inherited blood disorder in the United States, affecting about 100,000 Americans, predominantly African Americans and Hispanics.
The Links Inc., the largest and oldest professional organization for African-American women, formally announced the grant to St. Jude on May 3.
“As the only medical doctor who has been president of this organization, my thrust for members has been all about health,” said Glenda Newell-Harris, M.D., national president of The Links, Inc. “I had a chance to visit St. Jude a few years ago, and was personally very moved and touched by what I saw walking the halls of this hospital.”
Sickle cell disease has been a research and treatment priority dating back to the founding of St. Jude in 1962. Entertainer Danny Thomas, who raised money to found the children’s hospital in Memphis, declared that children should be treated without regard to their race, religion or ability to pay.
Today, St. Jude has one of the largest pediatric sickle cell programs in the country.
I was impressed by what I learned about Danny Thomas and his commitment and dedication to children, in particular during the civil rights movement.
For parents of children with sickle cell disease, like Chris and Nichole Bridges, The Links Foundation grant means renewed hope for a cure, and a better life in the meantime. Two of their three daughters have the disorder and are patients at St. Jude. Chris has dedicated his life to finding a cure as a lab technician at St. Jude.
Chris says he feels helpless when one of his daughters has a pain crisis. The disease causes red blood cells to reshape into half-moons, which prevents normal blood flow and oxygen delivery. Patients are at increased risk of infection and life-threatening situations such as stroke. They commonly experience unpredictable, acute pain that can last for several hours up to weeks at a time.
I try to hold them and pray and talk to them: ‘If daddy could take it away from you I would.’ I can’t do anything about it and that’s hard.
The Legacy Grant will support expansion of three St. Jude clinical efforts, including studies of cognitive deficits in children with sickle cell disease, the development of a health-worker education program aimed at saving babies in Nigeria and an age-appropriate mobile app to help patients develop self-care and disease literacy.
Director of Patient Services, Yvonne Carroll JD (left) with St. Jude patient Morgan and her mom, Myaudra
Youth-focused solutions are desperately needed as the transition from pediatric to adult care can make or break a patient’s successful management of the disease. The disorder’s symptoms are cumulative, and mismanagement of the disease can lead to drastically diminished outcomes and life expectancy for young adults.
Overall, the lives of people with sickle cell disease are typically 20 to 30 years shorter than those of people who do not have it.
And with a nationwide focus on opioid abuse, adult patients often encounter skepticism when they seek pain relief at the emergency room.
St. Jude offers a transition program to introduce teen patients to local adult care providers and set them up for success in ongoing treatment. The program includes mentoring and support groups, a venue for teenagers to process their fears about the future.
And death is the issue that they’re thinking about. At 16, 17, they’re thinking about dying. We want to allow children to know that there are people with sickle cell disease who live longer and who live successfully. But we also want to find out why, in their mid-20s, that the mortality and morbidity rate increases. Nobody really knows the answer to that question.
To get those answers, St. Jude is conducting a comprehensive cohort study that follows patients with sickle cell disease from birth to end of life.
“We look at all of the consequences of sickle cell disease in the body, all the things that could potentially be damaged from the disease,” said Jane Hankins, M.D., associate member of the St. Jude Department of Hematology.
The Bridges girls, Khirsten and Kaitlyn, take medication daily, and when pain crises arise, they are hospitalized and receive blood transfusions. Things that might seem like an afterthought for most, like staying hydrated and getting enough sleep, are also critical tools for staying on top of the disease and preventing pain crises.
St. Jude patients Kaitlyn and Khirsten (left) with sister Khristia Bridges, father, Chris, and mom, Nichole
As much as St. Jude is doing to advance cures and treatment for sickle cell disease, Nichole and Chris have to prepare their girls for the day when they will leave the hospital’s care, and they are starting early. For Nichole, that means arming her daughters with medical terminology and teaching them to advocate for themselves.
Jane Hankins, M.D., with St. Jude patient Bryce
In general, it’s hard to become an adult for anybody, and it’s even more difficult if you’re reaching adulthood and you have a chronic disease. You’re living with frequent pain crises; you have to take your medication; you have to learn about your disease; you have to learn to communicate with adult providers; and you may be going to college or technical schools, so your life is undergoing so many changes.
Until then, the Bridges are prepared, and wait hopefully.
“What we try to instill in our daughters every day is, ‘You know, I can have sickle cell and I can overcome. Even through the pain I can make it through this and make it just one more day,’” Nichole explains. “But ultimately we are praying for a cure.”
Through funds provided by the Legacy Grant, researchers at St. Jude will also pursue a health-worker education program in Nigeria.
Globally, more than 300,000 babies are born with sickle cell disease every year, and Nigeria accounts for roughly 50 percent of these births. In the U.S. and other high-resource countries, testing all newborns for sickle cell disease has dramatically reduced the number of children who die from the disorder, and approximately 99 percent of children born in the U.S. survive into adulthood.
In Nigeria, 50 percent to 90 percent of children who are born with sickle cell disease die before reaching their 5th birthday. Most of these deaths are preventable by simple interventions such as family education, vaccinations, giving children penicillin to prevent infections and starting medication early to prevent malaria.
To make a global impact on sickle cell disease, St. Jude Global and the Department of Hematology are working with Nigerian doctors to implement a newborn screening program to ensure children born with sickle cell disease in Nigeria receive these proven interventions.
“We want to implement the simple but effective lifesaving therapies, pioneered in the U.S. and at St. Jude, for newborns with sickle cell disease in Nigeria,” said Jeremie Estepp, M.D., assistant member of the St. Jude Department of Hematology.
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