Shirley Nkechinyere Hills, is a sickle cell disorder survivor and a multi-award winning serial entrepreneur who runs a health advocacy campaign through ‘Shirley Hills Foundation.’ In this interview with HENRY TYOHEMBA, Hills bares her mind on the need to pass a bill on sickle cell disorder necessitating genotype test for couples before marriage.
You run a health advocacy through Shirley Hill Foundation. What inspired you?
It is about turning my pen to purpose. So many people have lost their lives to sickle cell and personally, I had my own fair share of a death experience where I was already termed dead and my Mum, who was with me at the time, had almost given up the ghost but somehow, by a sheer privilege, I was revived. So, what prompted me was to help people who have this ailment, having survived it. I am still surviving it but it is not exactly a foundation actually, it is a humanitarian venture and as a result, we have established it to bring hope and succour to our people and the society respectively by addressing global health challenges through informed actions. Informed actions in the sense that people need to understand what sickle cell is all about, people need to be informed of their genotype because that is the root cause, marrying wrongly. You are coming together as two people without knowing your genotype. At the end of the day, an AS woman and an AS man get married and they produce an SS, the chances are huge. So, more often than not, the chances are so slim that you will get a non HPSS child. What prompted me therefore, was to alleviate the pain of the society. The foundation has been established to promote awareness and advocacy for preventing, controlling and managing sickle cell disorder in Africa, starting with Nigeria and we want to provide support and succour to carriers of the traits and the sufferers of the disease respectively and we are doing this through counseling, awareness outreaches, advocacy campaign, educational programmes, treatment and research and these things we cannot do all by ourselves. So, we solicit the support of well meaning individuals, donor agencies, the government to come and help us and fellow NGOs who are already in the fight and advocacy for people living with sickle cell disorder.
Many experts have called for policy development and a Bill on Sickle Cell disease control in Nigeria. What is your take?
It can really go a long way if stakeholders and interested partners would come out to do the needful. If the bill is passed, we can have as much support as we want. As a matter of fact, it will even give us the policy that says that if you are both AS and you get married, there will be a penalty. People need to check their genotype before marriage so that there will be no case of this sickle cell disorder. I have met several people who will tell you that ‘I know my wife is AS but I married her like that because if my family knows, they will not allow me to marry her’ and then you marry that woman and you are AS. Concerning the bill, it is important that the bill is passed so that we can curtail and manage sickle cell disease in Nigeria. People will be more aware because they know that if I am AS and I get married to somebody who is AS, I will have a chance of having an SS child. So, when you know that you are going to bring a child to suffer in the world and you know that you will be punished for it, you have to be careful because the bill will have to include the policy that two people, who are carriers of the traits, cannot get married.
Statistics shows that Nigeria has the highest rate of Sickle Cell disorder. what do you think is responsible and what is the way forward?
The major cause is marriage or procreation of the same genotype. If we can meet it at the board, that is just what people can do to avoid sickle cell because it is a genetic blood disease from two people that bear the same traits of AS, that is the only way it can be prevented.
What is your advice for people living with Sickle Cell disorder?
For those who already have sickle cell, how do we manage it is the question. We manage it through hermaninics drugs and most of the time, these drugs are not cheap. They are not made affordable and there are so many sickle cell victims, who have returned to their villages because they cannot maintain the standard of living in Abuja or in the urban areas and also maintain the standard of getting their drugs because this is a life time affair, unless you have a divine intervention and you are healed. It is a life-long disorder and it is in your blood. One way to prevent it is to stop procreation of people of the carriers of the traits. Then to manage it, we have to provide sufferers of this disease with free medications. There can be a medical intervention from the government. The government can give us free medical attention for people with sickle cell, as well as other terminal health disorders. Another way is through living a healthy lifestyle. Don’t expose yourself to cold, drink lots of water, stay away from dusty environment, make sure your environment is well oxidised and avoid getting malaria and traumatic experiences.
What current programmes are you running to enlighten people on the Sickle Cell disease?
We run a ‘Red Crystal Initiative’, which is for sickle cell prevention and management initiative and we started the sickle cell smart campaign, which is both for sickle cell victims and non-sickle cell, for people to be aware and be smart about those living with sickle cell and how to attend to them.
What challenges have you been facing in running a health advocacy campaign?
One of the major challenges has been funding. Funding our programmes, research and for the support of our warriors. We have lost so many warriors because we didn’t have pre-requisite funding. Another challenge is the attitude of caregivers and lack of adequate medical attention. Many people do not have caring attitude towards sickle cell patients. If you go to hospitals and see the way they treat people with sickle cell, it is as if we are addicts. There should be proper medical training for people that attend to sickle cell patients and people with genetic blood diseases like our own. So, it is important that this is done.