DVIDS – News – Sickle cell disease, Childhood cancer awareness month: summit focuses on advances, transitions and disparities in sickle cell disease
Walter Reed Bethesda’s John P. Murtha Cancer Center hosted the Childhood Blood and Cancer Summit on September 23, 2021 at the Military Medical Center.
This year’s summit focused on the advancements in sickle cell disease, the transitions of pediatric sickle cell patients to adult care, and the disparities in sickle cell care regionally and globally.
September is Sickle Cell Awareness Month, as well as Childhood Cancer Awareness Month. In previous years, the summit has addressed advances in the diagnosis, treatment and care of childhood cancer, which affects approximately 1 in 285 children in the United States before their 20th birthday, according to the National Cancer Institute, which is part of the National Institutes of Health. . Each year in the United States, approximately 15,600 children 19 and under are diagnosed with cancer, and around the world, more than 300,000 children under 19 are diagnosed with cancer each year, reports the NCI.
Sickle cell disease (SCD) also has a huge impact on people, affecting approximately 100,000 Americans. According to the Centers for Disease Control and Prevention (CDC), it occurs in about 1 in 365 black or African American births. Additionally, SCD occurs in about 1 in 16,300 Hispanic births, the CDC also reports.
It is estimated that one in 13 black or African American babies are born with sickle cell trait (SCT), the CDC adds. Many people don’t know they have TSS because the trait usually doesn’t cause illness, but those who have it can pass the trait on to their children. If both parents have SCT, there is a 25% (or 1 in 4) chance that one of their children has SCD, characterized by periods of severe pain caused by sickle-shaped red blood cells, rather than by healthy round red blood cells.
In a person with sickle cell disease, the red blood cells become hard, sticky, and look like the C-shaped farm tool called a sickle. Sickle cell cells die prematurely, causing a constant shortage of red blood cells. This makes blood transfusions vital for people with sickle cell disease. Also, when sickle cell cells pass through small blood vessels, they get stuck and obstruct blood flow, which can cause pain, infections, acute chest syndrome, and stroke.
During the summit at Walter Reed Bethesda, Dr Andrew Campbell discussed inequalities in sickle cell care regionally and globally, and strategies to close the gap. Associate Professor in the Department of Pediatrics at the George Washington School of Medicine, Campbell explained that the treatment of sickle cell anemia relies on early detection to determine if the child was born with a trait or sickle cell disease, and although sickle cell disease is the most common inherited blood disorder. globally, access to testing is a critical disparity in the global treatment of sickle cell disease, particularly in sub-Saharan Africa.
Campbell said that while SCD has a huge impact on people in the United States, its burden is most felt in countries outside of states, with most cases occurring in sub-Saharan Africa. There, most medical centers lack the resources to treat the disease. He said international teamwork was needed to address the global burden of pediatric disease.
In addition to Campbell, other presenters at the summit, including those with SCD, explained that the disease affects a disproportionate number of people from ethnic minority groups in the United States, some struggling with poverty, lack of insurance and access to health care. In addition, they explained that patients with sickle cell disease often depend on emergency departments for care during a pain crisis, and because opioid medications are often needed to treat pain, adolescent and adult patients are frequently stigmatized as drug seekers, even when they disclose their sickle cell disease.
Campbell said more can be done in the United States to improve the experiences of sickle cell patients and reduce health care inequalities in the United States.
“Sickle cell disease is a disease of disparities in health care, in terms of lack of research, misunderstanding, and lack of appropriate therapies,” Campbell said. He encouraged those who pursue medicine to “make a difference, to get into public health to be part of the stakeholders who play a role in improving access to care for patients with sickle cell disease.”
Dr. Caterina Minniti was also a keynote speaker at the summit. She discussed the “growing pains” of people with sickle cell disease, explaining some of the challenges pediatric patients with sickle cell disease face when making the transition to adult care. These challenges may include loss of home medical care, decreased access to outpatient services and hematology specialists with an interest or expertise in CDS, loss of insurance, loss of an adult caregiver, the worsening of the disease and the worsening of the stigma.
“Deterioration in health is multifactorial during the transition of care for young adults with sickle cell disease,” Minniti explained. She added that this leads to increased morbidity and mortality. “It is not the patient, but the system that has to change,” she added.
Stacee Springer, a clinical social worker at Walter Reed Bethesda who works closely with pediatric beneficiaries and their families, explained that one of the most important aspects of a pediatric patient successfully transitioning to adult care is to identify a suitable supplier. She said this should involve a discussion with the young adult about their expectations of a new provider, their health insurance needs, and identifying a provider who is accessible and willing to follow the youngster. adult.
Minniti added that health care during and after the transition from pediatric to adult care should be “flexible, responsive, developmentally responsive, comprehensive, coordinated and [possessing] continuity.”
Springer and Army Col. (Dr) Dina Parekh, Pediatric Hematology / Oncology physician at Walter Reed National Military Medical Center, discussed the comprehensive sickle cell care program at WRNMMC. The program includes a multidisciplinary clinic with annual visits for beneficiaries aged 2 to 26 years with all phenotypes. Those 2 years of age and younger may be seen more frequently by the clinic. Annual visits include a number of screenings including retinopathy, transcranial Doppler, proteinuria, lungs, echocardiograms, high-risk neurocognitive immunizations, behavioral health, and transition-based education and counseling. of age.
Parekh said the program is tailored to the needs of beneficiaries, focused on the patient and family, and includes input from doctors, nurses, clinical social worker and administrator. Those who also assist in care may include an art therapist, physical therapy, the patient’s school, and hospice professionals. Springer added that communication between team members is critical to the success of the program.
Paige Cephas, who has sickle cell disease and has moved from the military health care system to adult care, said, “I knew when I got here. [as a SCD pediatric patient], everything would be settled. I got everything I needed without going to different parts of the hospital. She explained that one of her biggest challenges as an adult with sickle cell disease is trying to keep up with the various medical appointments she has to keep to stay on top of her care.
Regarding the impact of the COVID pandemic on sickle cell care, Campbell said many sickle cell patients “cower at home” fearing to come to hospital for fear of COVID exposure. . This was also the case for potential blood donors, as well as those needed for transfusion therapy. He added that it also appeared that sickle cell patients were less inclined to seek emergency care for painful episodes for fear of possible exposure in the emergency department.
Regarding the COVID vaccination, Campbell said during the spring, there appeared to be a crisis, but just before schools started there had been a significant increase in the number of people vaccinated, including parents of patients. pediatric SCD.
“The complications from the vaccine are really low,” Minniti said. “We no longer see complications among the SCD population that are different from those we see in the general population,” she said.
For more information on sickle cell disease, visit the CDC’s website at https://www.cdc.gov/ncbddd/sicklecell/index.html.
|Date posted:||09/27/2021 2:16 PM|
|Site:||BETHESDA, MD, United States|
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