By Leonard E. Colvin
New Journal and Guide
Over 40 years ago Diane Creekmore was wondering why her firstborn daughter Sherita was constantly experiencing bouts of pain. She was diagnosed with various ailments and prescribed various medicines which did nothing to resolve the child’s ills.
She discovered that previous physicians had misdiagnosed her child’s medical issues. She finally consulted a doctor who administered a test revealing that her offspring had Sickle Cell Disease (SCD).
Five years later, her second child Dinita, was born and at 18 months old was diagnosed with Sickle Cell Disease (SCD) as well. Both girls were born in Virginia; however, at the time of their births there was no newborn screening for sickle cell to alert parents that their child was affected by SCD, a disease affecting mostly people of African ancestry and other races.
“I took my children to CHKD as referred by their pediatric doctor, Dr. Toland,” she recalled. At that time Dr. Rebecca Byrd and Dr. Melissa Warfield oversaw the sickle cell program.
“They told me that neither one of my children would live to see their teen years,” said Creekmore. “I did not know what to do. I did not know anything about the disease. They told me to go and talk to someone at the local Sickle Cell Association of Hampton Roads.”
At that time, it was called The Sickle Cell Society.
The organization is now 51 years old, and Judy Anderson is its Executive Director and has spent 47 years with the agency. When Creekmore first walked through the front door of the organization, Anderson said she was not working directly with the patients. But over time she, Creekmore and other individuals with families have become close knit and supportive.
Thanks to the association, after countless hours of researching, engaging the medical and political establishment, Creekmore and others impacted by SCD have evolved into a small army of outspoken activists for individuals and families living with SCD in Virginia each day.
Creekmore was born in Norfolk in the Historic Titustown section of the city.
Anderson said that some 5,000 mostly African-American Virginians have SCD, and half of that number are in Hampton Roads. September is Sickle Cell Disease Awareness Month. But Anderson said she and SCD Awareness Warriors like Creekmore, are beating the pavement to advocate and educate people on the subject each day they open their eyes.
Creekmore and her fellow advocacy warriors don’t mince words about the slow pace of the development of a surefire and affordable treatment for SCD more than 100 years after it was first discovered. Over the years they have worked to educate themselves in every aspect of the deadly disease.
They formed the Sickle Cell Family and Peer Advocates of Tidewater (SCFandPA) which networks with the SCD Association and other groups promoting awareness. She said the group was formed over time as families and individuals with children impacted by SCD often engaged each other.
SCFandPA, year-round, organizes various community and client focus events such as Health Fairs, Support Group Meetings, Game Night, Christmas Parties for families, assisting families during holidays, school supply giveaways, Blood Drives and the SCD Walk at Norfolk State University.
Anderson said that her organization now has a caseload of 235 people including 55 families. She said the funding levels of the association dived.
She recalls the late State Senator Yvonne Miller, who began fighting to insert state funding into the state budget for the agency in the 90s.
Anderson said that federal funding in small grants via the state Health Departments provides resources. Her agency manages to provide emergency assistance for medical co-pays, medicines, and other services.
For those with SCD, dealing with a blood crisis is a large part of living with the disease. This happens when their blood flow is blocked to joints and organs due to the sickled shape of their cells. People experiencing excruciating pain during a Sickle Cell Crisis need a transfusion of fresh normally shaped red blood to reduce the impact of the sickled cells.
Blood collected from African-American donors due to its unique make-up is a key element in transfusions.
On September 18, SCFandPA was scheduled to participate in a blood drive at a local car dealership but it was cancelled due to a lack of people signing up to participate.
Over the years Creekmore has campaigned to encourage Black people to donate blood for SCD and other reasons.
“I am so disappointed,” Creekmore told the GUIDE. “Sickle cell affects mostly Black people. But why don’t our people care about this disease and its impact on our community? I do not understand it.”
Creekmore said despite the century-long existence of the SCD, the nation’s healthcare networks have fallen behind in addressing the issue of pain and other disparities facing people with the malady.
Creekmore says pain “is the hallmark” of the Ill effects that most people with SCD face daily.
In the 90s and until recently morphine was the most widely used drug to combat it, for adults and even children. Since then, several other pain meds (opiates) have been developed.
Some procedures show signs of providing a cure for SCD. Advocates say that Stem Cell Gene Therapy is promising. Also, receiving compatible bone marrow from a family member, is a hopeful treatment.
Back in 2018, Creekmore brought awareness about the way SCD patients, experiencing debilitating pain, were treated in the emergency rooms, their most convenient means of seeking care, especially for adults.
“Sickle Cell patients are still being treated like drug addicts trying to get a quick fix,” she said. “They are called frequent flyers and worse. ER personnel need to be trained to be more sensitive about this issue.”
While most children with SCD are treated at CHKD, Creekmore says there is no Comprehensive Care Treatment Center for adults with the disease.
Anderson said she is acutely aware of the lack of such care for SCD patients who transition into adulthood and out-of-care eligibility at CHKD.
She said SCD patients who have a private doctor or Medicare or Medicaid-funded Care Physician (PCP) are usually referred to a blood specialist such as a hematologist in the region.
Many patients must travel an hour to adult SCD care in Richmond, “often experiencing pain” due to a Sickle Cell episode.
Both in their 40s now, Sherita S. Yancey and Dinita L. Brazell, her daughters, and others, are alive and well, have families and are living healthy lives.
“Since the diagnosis of my children and their illness I’ve been passionate about educating myself about Sickle Cell,” she said.
“So, thanks to the Sickle Cell Association Inc., for my volunteer years, traveling to the Virginia General Assembly, Capitol Hill Washington DC, and to State and National conferences. As a result of my caring and research, I now know more about the disease, about the care or lack people are receiving and realize so much more needs to be done.”