Almost 100 people gathered at Busboys and Poets on Fifth and K streets, northwest last week to discuss research that could lead to improved treatments for sickle cell disease
and challenges people living with the inherited blood disorder face.
The event was the third installment this year of Science Café 360°, a series that connects researchers with residents throughout the Washington, DC, metropolitan region. The gatherings allow the public to provide their perspective on medical research, usually on pressing local healthcare needs.
Dr. Susan Perrine-Faller, a hematologist and oncologist at Howard University, discussed research pertaining to the life-threatening disease including the possible benefits of high levels of fetal hemoglobin, the oxygen-carrying pigment produced in the womb, on inhibiting red blood cells to sickle in adolescent and adult patients.
“I feel research is so important,” Dr. Perrine-Faller said to the packed room. “We only know the tip of the iceberg of a disease.” Advocating participation in clinical trials, Dr. Perrine-Faller said that research needs a lot of people to find out what works best since medications affect individuals differently.
The event featured personal stories from adults living with sickle cell disease, many lamenting on the disparity of care from childhood to adulthood. One speaker ,Boston resident Cloret Clark, participated in clinical trials with Dr. Perrine-Faller read a poem that she wrote describing the challenges she has faced with the disease.
At one point in time, the audience was standing room only filled with local healthcare professionals, families living with sickle cell disease, and representatives from organizations and programs such as Be The Match
, an initiative of the National Marrow Donor Program.
Shameka Jones of Silver Spring, Md., whose son has sickle cell disease, asked about the differences in managing the inherited blood disorder in an adult setting versus a pediatric one such as Children’s National, which has among the largest pediatric sickle cell disease programs in the country. Each year, Children’s National treats more than 1,400 children and young adults, from birth to age 21, with all types of sickle cell diseases. Several people voiced concern about how they feel adolescent and adult patients fall through the cracks in terms of receiving care because of the lack of attention on sickle cell disease in older patients.
“The power of the patient is huge,” said one audience member as she advocated individuals align themselves with local and national organizations committed to awareness, advocacy and research on the disease.
The Community Advisory Boards within Children's National Health System, George Washington University, Howard University, and Georgetown University hosted the community event. The free event was supported by a NIH Clinical and Translational Award Grant.
Providing opportunities to engage the public and connect clinicians with the community are vital and gatherings such as the Science Café meet that need, according to Joseph Wright, M.D., M.P.H., chair of Howard University’s Department of Pediatrics and former senior vice president for community affairs and head of the Child Health Advocacy Institute within Children’s National Health System.
He noted that Howard University President Wayne A.I. Frederick, a surgeon and researcher, supports the event and hopes to see more partnerships like it to address pressing issues. The university’s Center for Sickle Cell Disease assists teens and young adults transitioning from pediatric to adult providers and works with Children’s National and NIH to provide patient services for sickle cell disease in the region.
In 2013, two cafes focused on asthma and mental health, and one in early 2014 discussed bone marrow transplants for sickle cell disease. Organizers plan to address future topics such as reproductive/sexual health and obesity.