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  • Writer's pictureJoye Smith

Why I prefer sickle cell disease prevention to the search for a cure

As a survivor of sickle cell challenges and a passionate advocate for sickle cell disease prevention and a cure, if I were put under duress to choose between prevention and a cure, I would prioritize prevention, despite many alternative viewpoints. The reason is because prevention is paramount to reducing the incidence of sickle cell disease worldwide.

People who disagree about preventing the disease in their unborn children often argue that personal happiness outweighs concerns about genotype compatibility. They cite advancements in treatment that allow some warriors to live longer, as well as the availability of other types of prevention apart from genotype compatibility. Some note the likelihood of only one child out of many inheriting the disease. Despite these reasons, I still support sickle cell disease prevention instead of gambling and waiting for a universal cure that might never come.

Why It’s Important to Learn Your Genotype

Genotype compatibility

I strongly believe in the significance of love. For any single person desiring biological children, you hold the key to your unborn child’s health. Your decisions can determine whether your child will have certain diseases or not. It is crucial to be aware of your genotype and select a compatible partner if you are unable to pursue other methods to prevent the birth of children with sickle cell disease.

Note that two partners’ genotypes are said to be compatible when they have no possibility of birthing a child with sickle cell disease. In contrast, they are incompatible when they can birth a child with sickle cell disease. The universally compatible genotype is AA.

Alternatives for couples with incompatible genotypes

To avoid having a child with the disease, it is not necessary to forsake love. Suppose you plan to have children with a partner with an incompatible genotype. In that case, alternatives include:

  • Choosing not to have biological children

  • Adoption

  • In vitro fertilization (IVF) along with preimplantation genetic testing of one’s embryo. This ensures the embryo has no genetic diseases; if it carries any disease, it won’t be implanted.

Choosing a partner with a compatible genotype is the most effective and economical way for people from low socioeconomic regions. The majority of people with sickle cell disease come from sub-Saharan Africa, where many cannot afford IVF or cope with the stress. Many of these same people believe that childbearing is the primary purpose of marriage, so they often don’t welcome options like adoption or choosing not to have children.

Having children with sickle cell disease also can take a toll on marriages. I have witnessed couples who were deeply in love but saw their marriages crumble under the strain of raising children with sickle cell disease, due to financial, mental, emotional, and physical stresses.

Challenges of finding a universal cure

While the idea of discovering a universal cure is remarkable, developing one for a genetic disease is one of the most challenging tasks in the field of science. This is evident by the fact that many of the approved treatments for sickle cell disease do not constitute a universal cure. Instead, they are disease-modifying therapies that aid in symptom management and slow the progression of organ damage.

Additionally, the gene therapies that have shown promise for becoming a potential cure are often not affordable or accessible to the majority of people living with the disease. Moreover, serious complications can result due to the use of chemotherapy for these new therapies. Given the uncertainty surrounding the quest for a universal cure for sickle cell disease, I am hesitant to rely solely on this possibility.

The urgency of prevention measures

Prevention emerges as the most effective strategy to reduce the incidence and mortality rates of sickle cell disease, especially considering the progressive nature of the disorder and the impact of sickle cell-related complications on quality of life. People living with sickle cell disease face various challenges, from excruciating pain to multiple organ failure, and from physical disabilities to reduced life expectancy. This highlights the urgency of proactive measures to prevent the birth of more children with the disease.

When preventive measures are available, we should not needlessly pass on the burden of sickle cell disease to any child, as every child deserves the gift of good health.

While we eagerly await an affordable and accessible universal cure for sickle cell disease, I emphasize the importance of knowing one’s genotype and urge partners with incompatible genotypes to earnestly explore avenues to prevent the birth of more children with the disease. Ignorance used to be an acceptable excuse, but not anymore. In sickle cell disease management, prevention for me will always be superior to a cure.

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