Freedom and Justice… and the Pursuit of a Marriage without Sickle Cell Babies

Richmond Darko

On Tuesday 9 March and Wednesday, 10 March 2010 Ghanaweb.com and myjoyonline.com, respectively, published the same article titled, “Know sickle cell status of your marriage partner - Mettle-Nunoo”. The first section of the article stated “The Deputy Minister of Health, Mr. Rojo Mettle-Nunoo, has stressed the need for Ghanaians to know the sickle cell status of their prospective marriage partners to reduce its incidence in the country. He said in view of the prevalence rate, the pain, anguish and cost of medications that patients had to bear, it was important to exercise restraint in expressing love to a member of the opposite sex before marriage”. My comments below assume these words capture the true message the Deputy Minister intended to convey. When I read articles on myjoyonline.com and on Ghanaweb.com I often return to read the numerous reader comments. A month after these articles were published, there had been only two reader responses to the two articles. The lone responder on myjoyonline wrote: “If no one marries these sickle cell patients, who will then marry them? Think on these things and pray, for all things are possible to them that believe.” Whereas the lone responder on Ghanaweb wrote “Provide better health facilities: That is the solution.”

I remain disappointed at the fact that this article and the controversial statements made by the deputy Minister of Health did not ignite the heated debate I expected to see among readers. I expected readers to respond as passionately as they often do on issues regarding which players are selected to play for the Ghana Black Stars. Where is the outrage?! Perhaps, most readers agreed with the Deputy Minister, and this idea of a “controversy” is a figment of my own imagination. Well, I refuse to believe there is no controversy here, and I will explain why shortly. Perhaps most readers agree with the responder who asked us to think and pray about these things and see what God does, and since praying and thinking often do not go with showing the type of outrage I had expected to see, the reader-silence is understandable. Perhaps, the outrage will come as people heed to Honorable Deputy Minister’s advice to get tested for sickle cell, learn about their status, and realize it is not effortless to exercise restraint in expressing love to a member of the opposite sex before marriage.

Sickle cell disease is a serious public health issue for Ghana and the whole of Sub-Saharan Africa. In Ghana, about 1.8% of children born each year have sickle cell disease. To put this in real numbers, about 705,500 children are born each year in Ghana, and of these about 12,700 have sickle cell disease. It is estimated that about 95% of these children die before they reach 5 years of age, some without their parents even knowing they had sickle cell disease. A child cannot be born with sickle cell disease unless each parent carries at least one copy of the gene that causes sickle cell disease. So it may seem that if you know you have one copy of the gene the best way to make sure you don’t give birth to a child with sickle cell disease is to only have children with someone who does not carry a copy. It would mean exercising “restraint in expressing love to a member of the opposite sex before marriage” until you know he or she is not carrying a copy of the sickle cell gene. But things are not that simple. In Ghana, 1 out of every 4 people carries a one copy of the gene that causes sickle cell disease. It is impractical to expect people to demand to know each other’s sickle cell status as they court one another. Yes, knowing one’s sickle cell status is important, but what is even more important is providing people with the appropriate and well-informed counseling services to allow them to make the right decisions regarding their marriage and reproduction.

The importance of proper counseling regarding sickle cell disease, and the absence of appropriate counseling services in our current health system in Ghana became personally vivid a few days ago.

Less than a month after reading these articles, I received a phone call from a very good friend, who asked me to explain to her the health implications of sickle cell disease. I went on lecturing her about the science. Then she asked me if I thought it was selfish to marry someone when you are aware your child is risk for sickle cell disease. At this point, I realized she was not asking me to give her a lecture, but that she was asking for counsel. She has been in a very close relationship with her boyfriend for 5 years, and they were planning to get married. They found out they each have a copy of the gene that causes sickle cell disease, and although they are healthy, they are aware of the 25% chance that each time they had a child he or she could be born with sickle cell disease. I asked if they had been receiving advice from any trained professional. Of course, I should have known the answer to my own question before I asked. Certainly the answer was, no—because our health system currently does not provide such services to the Ghanaian.

When two people who love each other find themselves in such a situation, what they need is support and counseling and to “think and pray” as one of the lone responders said.

Very often our church and other community leaders provide the counseling for couples who plan to marry. The fact, however, is, that they lack the knowledge and the training necessary to provide the appropriate counseling on matters regarding sickle cell disease. Some of these leaders, despite their well intentions, are simply giving people the wrong information.

Even some health professionals are providing inappropriate and incomplete counseling. When my friend went to get tested for sickle cell, she received a note from the lab technician with her results. It read: “WARNING, Pls do not marry man with AS, SS, SC or CC. Your right man is = HB-Genotype AA. Take Note. To avoid future problems. To avoid sickler marry AA.” AA refers to someone without a copy the gene for sickle cell disease. This falls short of the emotional and psychological support or counseling. It is essentially a warning to her and instruction to end her relationship with her boyfriend.

The lone responder on Ghanaweb said “provide better health facilities: That is the solution.” As general is it sounds, there is immense truth to what he suggests. Before suggesting the need for Ghanaians to know the sickle cell status of their prospective marriage partners, what the Ghana Ministry of health ought to do is provide the appropriate counseling resources and facilities for sickle cell disease.

A comprehensive sickle cell control program should, among other features, include a plan to advocate screening, as well as provide education and counseling components to empower the citizen to make informed and values-based decisions regarding his or her own reproductive choices.

Until it ensures the provision of comprehensive and accessible counseling for all who seek their sickle cell status, the Ministry of Health is putting the cart before the horse when it stresses the need for Ghanaians to know their sickle cell status and that of their prospective marriage partners.

The Author is an MD candidate at the University Of Chicago School Of Medicine and a Masters in Public Health (MPH) candidate in Global Health at Emory University School of Public Health. Email: rdarko@gmail.com