For Dr. Gwendolyn Poles, sickle cell disease has served as a daily reminder that many health conditions disproportionately impact people of color. Born with sickle cell disease, the retired physician from Harrisburg, Pa., has made it her lifelong mission to increase awareness and resources for the blood disorder that largely affects African-Americans in the U.S.
The work of organizations like the South Central Pennsylvania Sickle Cell Council, which Dr. Poles helped co-found in the 1990s, has taken on greater importance during the current pandemic.
Because sickle cell patients are at higher risk of developing severe complications from COVID-19, many are staying home and forgoing in-person treatment, according to media reports
When people have sickle cell disease, their red blood cells bend into a sickle shape. This causes the red blood cells to pile up inside blood vessels and prevents the normal delivery of oxygen throughout the body.
It can lead to pain, bone deterioration, strokes, and organ failure, but regular medical care can help keep the disease at bay. Unfortunately, sickle cell disease also makes it difficult to fight off infections, which leaves patients particularly vulnerable to COVID-19.
Enter the South Central Pennsylvania Sickle Cell Council, which provides a host of support services for sickle cell patients in 26 Pennsylvania counties. These services include providing transportation to doctors’ appointments, support groups, patient education, and helping patients adhere to their prescribed medication and treatment plans.
While acknowledging the challenge COVID-19 has presented, Dr. Poles said the Council and its partnership with Penn State Health has helped keep many local sickle cell patients connected to their physicians through telemedicine.
Historically, research and resources for sickle cell disease has been chronically underfunded, but Dr. Poles said new treatments in recent years give her reason for optimism.
“The unfortunate underlying truth is because it predominantly affects people of color, particularly African-Americans, getting attention, research, and resources has been a very challenging issue,” Dr. Poles said. “When I was growing up, there wasn’t much knowledge about the disease – even the medical community.
“When I was growing up, there were literally no treatments other than controlling the pain and monitoring for organ damage. Luckily, there are a number of options today.”
Two potentially transformative drugs for sickle cell were approved in late 2019 by the FDA. There is also hope that gene therapies, which are currently going through clinical trials, may present another breakthrough in the coming years.
September is national Sickle Cell Disease Awareness Month. Find more information about the South Central Sickle Cell Council at www.scpascc.org