Sickle Cell: The Cure and Resources
By Dianne Anderson
For those devastated by the debilitating pain and crisis of sickle cell anemia, the long-awaited cure for the disease is here and now.
Dr. Akshat Jain, MD, a pediatric physician specializing in hematologic disorders at Loma Linda University Children’s Hospital, said they are working hard to help as many children as possible who suffer from sickle cell disease.
In April, the hospital announced its first stem cell transplant for 11-year-old Valeria Vargas-Olmedo, who was experiencing bone loss, and severe chronic pain of sickle cell crisis.
She was too weak to walk or attend school. Vargas-Olmedo received stem cells for her transplant from her father.
Dr. Jain said the hope is to continue the success of the program by building up the stem cell transplant team at the hospital, and to help others in sickle cell crisis in the inland empire and surrounding regions.
Sickle cell patients should continue working with their regular treating physicians, and talk about their choices along with their hematologist, which is the first step, he said.
The hematologist is an expert that judges the need for, and the feasibility of, implementing the stem cell transplant option. And, as with every procedure, he said there are risks that are communicated with each patient.
“The foremost area of risk is toxicity from chemotherapy and the risk of infection while the patient is awaiting the transplanted stem cells to take home and make healthy sickle-cell-free red blood cells,” he said.
Among many other services, Loma Linda University Children’s Hospital has a robust sickle cell comprehensive care program that provides hematology services for sickle cell disease including, physiotherapy, dental, imaging, laboratory testing, blood transfusions, and access to pain management specialists.
Depending on the insurer and the plan, medical costs and coverage can vary, but he said many insurances provide coverage, both in part or full, for such lifesaving therapies.
As for the risks, one adverse effect known to occur is the rejection of the stem cell donated product, and reaction to the donated stem cell – something called Graft Versus Host Disease.
“However,” he said, “it’s important for those seeking treatment to know that with recent advancements in the field, the toxicities described above are being seen less and less.”
According to the Center for Disease Control, sickle cell disease affects approximately 100,000 Americans, with about one out of every 365 Black or African-American births, with about 1 in 13 Black or African-American babies is born with sickle cell trait.
The disease impacts one of every 16,300 Hispanic-American births.
For Starlerra Simmons, sickle cell is something the family has learned to live with, and overcome. She and her husband did not know that they both carried the trait with their firstborn son.
Many years ago, her son was approved by their insurance for a stem cell transplant, but she opted against it, feeling the new procedure had too many variables at the time. It was too harsh with a long recovery hospital time.
“You have to weigh the quality versus the quantity of life. If you don’t have a good quality of life, then there is nothing to lose,” said Simmons, the president and founder of The Sickle Cell Foundation of Orange County,
Through the years, her children, now basically grown, have learned to strive despite their disability.
As a licensed sickle cell educator, Simmons fights for local parents and kids for access to medical and academic services through her foundation, which started with a fight for services for her own children.
On average, they’ve lost about 40 or more days of school time, hospitalized each year. Despite the pain, and long absences, her 16-year old daughter Alyssa’s grades haven’t suffered. She holds a 4.8 GPA, and is set to graduate high school next year with her bachelor’s degree.
Her goal is to get her law degree to advocate for disabled people.
Simmons said that her kids not only have endured but have a big heart to give back to the community.
“She does everything she’s supposed to do. She’s always rooted and grounded in Christ,” Simmons said.
Her son, Charon, was pronounced clinically dead in 2012 during a sickle cell crisis, and came back strong after a coma to graduate Cum Laude.
Lately, Simmons’ outreach leans more toward education policy, as she works directly with the Department of Education to guide parents and students to resources for primary, secondary and post-secondary education.
She also goes into hospitals, working with doctors to ensure that parents receive the right medicines for their children, and can access medical equipment in the home, including oxygen tanks, crutches or auditory equipment that schools may not supply.
She believes the sickle cell community needs more awareness of services, such as IEP’s and 504’s. She partners with several legal organizations to provide parents access to legal clinics.
Through the nonprofit’s free workshops, parents learn of their rights to ensure they get what they need so the kids do not fall behind in school while in the hospital. Parents can also learn how state and federal laws can protect their child through school.
Simmons, who began her outreach to advocate for her own children during the 1990s has since expanded services, helping hundreds of parents of sickle cell kids fight for federal education protections.
“[Our outreach] is so that students know what their rights are, and working to prepare them for college readiness,” she said.
To learn more about Children’s Hospital sickle cell program, call 909-651-1910 or see https://lluch.org/conditions/sickle-cell-disease-children
To contact Simmons for resources, see http://www.scdfoc.org/