Advocates Question Disparities Related to Sickle Cell: Due to Lack of Knowledge or Lack of Caring?

This post was originally published on Seattle Medium

By Aaron Allen

10 years ago, Christine Young gave birth to a beautiful Black child, and as she cuddled the newborn with joy, the nurses delivered the alarming news that her child had been born with sickle cell.

According to Young, the nurses were very patient with her at the time and asked her if she had ever heard of sickle cell.

“I expressed that I had heard about it and that it predominately affected Black people, and that’s all I really knew because I never had anyone close to me have it,” recalled Young.

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Red blood cells house hemoglobin, a protein that transports oxygen throughout the body. Healthy red blood cells are round, and in someone with SCD, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and shaped like the farm tool, the sickle, hence called a “sickle.”

The sickle cells die early, which causes a constant shortage of red blood cells. When these “sickle cells’ travel through small blood vessels, they can get stuck and clog the blood flow. This can cause pain and other serious complications such as infection, acute chest syndrome, and stroke.

There are several types of SCD. The specific type of SCD a person has depends on the genes they inherited from their parents. People with SCD inherit genes that contain instructions, or code, for abnormal hemoglobin. People who inherit one sickle cell gene and one normal gene have the sickle cell trait (SCT). People with SCT usually do not have any symptoms of sickle cell disease (SCD), but they can pass the trait on to their children.

African Americans have been disproportionately affected by sickle cell, unlike any other race or culture. SCD impacts roughly 1,000,000 Americans and 1 out of every 365 Black or African American births. Experts also believe SCT impacts around 1 in 13 Black or African American babies.

Jean Bishop, 70, a retired dental hygienist, has gone through life with the sickle cell trait, but witnessed the suffering that her sister, who died at an early age from sickle cell, went through as they were growing up. Bishop is now feeling the effects of the disease later in life, which in itself is a rare occurrence.

“My experience is a little different than other sickle cell patients,” says Bishop. “I had a very late start of sickle cell. Because of that, I was able in my earlier years to live a pretty normal life, although I had a sister with sickle cell, and she had many hospitalizations.”

For many patients, the most frustrating thing about sickle cell is the lack of information from qualified experts. Both Young and Bishop say that it is very important for people to know about the trait in order to properly care for themselves or a loved one who has it.

“They [her medical providers] gave me some step-by-step information and then sent us on our way,” says Young. “Me as a hands-on parent, I always ask questions. Basically, the medical field wasn’t forthcoming or even that knowledgeable on sickle cell, so I taught myself basically by reading, going to appointments, and just watching my daughter.”

“Where the inefficiency reveals themselves is in the knowledge and/or experiencing patients with SCD,” says Bishop. “What is lacking is to know why these things are happening in our bodies? Even contemporary medicine hasn’t invested in the cause of the pain and discomfort, and if not treated in time, the cause and effect could result in other parts of the body failing because the oxygen is not reaching those vital parts and the lack of attention can cause death.”

Foxy Davidson, Director of the Metropolitan Seattle Sickle Cell Task Force, sympathizes with individuals and families impacted by the disease.

“Experiences like Christine Young and Elise are unfortunately common,” says Davidson. “But I must say that there are healthcare providers who are doing an amazing job, and then there are those who just do not understand. The fact that it is the number one inherited blood disease in the world, and it’s treated like it’s rare, and you have to ask yourself why.”

Davison, a mother of three, says she had a similar experience when she discovered that two of her children had sickle cell.

“I remember no one knew the ‘why,'” says Davidson. “Why does this disease affect us in this way? I knew nothing about SCD before my children were born, and, in my experience, I kept hearing the word “lack,” lack of knowledge, lack of experience around people with sickle cell, lack of funding, and it was always coming up.”

“I remember asking my doctor what is this about? And, they just said ‘because of who it affects,'” continued Davidson. “I’ll never forget that day, and it really opened my eyes up to just looking at a health system where health care or the gaps in health care that are very real are based off of race and class.”

Since its discovery in western medicine in 1910, there has been an ebb and flow in keeping the medical field and the community abreast of this condition and how to treat it. For decades the medical field seemingly swept it under the rug noting it as a rare disease. There is no cure for sickle cell, and there are those who believe that modern medicine’s lack of emphasis on finding a cure for sickle cell is because it predominantly affects African Americans.

“Even though it affected many more people compared to others — cystic fibrosis and other diseases — sickle cell had no money going into research, and I think it was quite obvious this was due to the population it affected,” says Bishop.

Optimistically, Davidson says that medicine has made strides in the past decades to concentrate less on managing the pain associated with sickle cell, and beginning to put earnest effort into the why.

“Sometimes we don’t know where to look in regard to disparities,” says Davidson. “I do believe that within this condition, you see so many different disparities at play — that if we can come around and learn how to support this condition, it will teach us how to just be a more accommodating community, individually and as a whole. And so I encourage folks, don’t take your eyes away because that is what happened in the past with the ebb and flow. We need to keep our eye on this and the research and funding that surrounds it.”

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