ESCAPE - A Challenging Proposal
End Sickle Cell Across Planet Earth - ESCAPE. That’s who we are. Our vision. It is a simple statement, but considering the odds it is a momentous challenge. We are talking about a disorder that first came to light in 1910 when Dr. James B. Herrick reported the oddly sickle-shaped blood cells in one of his students who hailed from the West Indies. Further investigation revealed that many more people of African heritage had the blood condition which was named “sickle cell disease.” In 1949, in a major breakthrough in molecular science, Linus Pauling and his colleagues identified SCD as the first molecular disorder. The medical community has, therefore, known about sickle cell a long time. According to the Centers for Disease Control and Prevention (CDC), approximately 100,000 people in the United States presently live with the disease. It is most prevalent among African Americans, though there is a substantial number of cases among Hispanic, Asian, and European communities.
In 2006, the World Health Organization (WHO) declared that SCD was a global crisis. In the midst of all this, there is good news and bad news. The bad news first. Initially, studies predicted that by 2050, over 400,000 children would be born each year with SCD. Other studies show that already by 2021 over half a million were born each year with the disorder. This means that now each year more children will die before they see their fifth birthday. The implications of the WHO proclamation were realized sooner than anticipated. The good news is that every year, new treatments and therapies are being developed for the treatment and management of SCD. In addition to hydroxyurea and blood transfusions, gene therapies approved by the FDA now offers alternatives for treatment. Previously, bone marrow and stem cell transplants were the only means of curing the disease.
Reverting to the bad news briefly, all these treatments and cures for SCD are not cheap. Each option runs in the millions of dollars in cost and calls for a commitment of at least a year in care that involves multiple hospital visits and stays. Unfortunately, Blacks are most afflicted ethnic group yet they are the ones most challenged economically. Without good insurance, these treatments and therapies are out of reach for many living with SCD.
All this begs the question: are there an options that do not involve the prohibitive cost, invasive procedures, and protracted time commitment? The options imply that couples at risk of having a child SCD should avoid having children. The mere suggestion is enough to ignite a vigorous conflagration from those of a family-minded, religious, and traditional ethos. For example, when asked if she would consider childlessness, a newly married young woman stated, “Kwani I am not woman enough to have my own children?” Any Swahili speaker will understand that a statement fronted by the word “kwani” announces an entrenched, obdurate position. In America, Blacks have a spotty relationship the health care system. Instances of bias and negative treatment have left many of them wary of the system. Some studies also show that there is a perception that asking at-risk couples not have children is a form of population control intended to suppress this minority group. For those with a religions bent, urging childless goes against God’s command to procreate and fill the earth.
So, what can be done? With more than half a million children being born with sickle cell every year, something is not working. The treatments and cures mentioned above pertain to persons already born. If remaining childless is deemed ungodly, what should be said of bringing a child into the world knowing they will experience suffering, stigma, and pain most of their lives. The children will be unable to do many things children free of SCD would do. They will experience a sub-optimal quality of life - a life that is likely to be 20 to 30 years shorter than their normal peers. We at ESCAPE wrestle with such arguments in discourses with the community regarding a path of less physical and economic pain for parents and the children who would remain on the other side of conception -never entering this world of pain and suffering.
