After losing two siblings to sickle cell, Winifred Otokhina, a lawyer by training, who doubles as the Legal Coordinator for Tony May Foundation Sickle Cell Aid went into Sickle Cell Advocacy and today, she is an advocate for policies that would greatly reduce the burden of sickle cell disorder in Nigeria and she is making positive impact amongst the warriors. Our correspondent had a chat with her in commemoration of the 2018 World Sickle Cell Day. Excerpts
PDC: How long have you been a Sickle cell Disorder Advocate?
WO: I started being a sickle cell disorder advocate in 2011. I discovered during our awareness campaigns to communities that there was so much ignorance about sickle cell disorder. In a survey Tony May Foundation carried out in 2014, we found out that 70% of people in Ketu and Ajegunle communities are not aware about sickle cell disorder. Even the 30% who are aware of the disorder do not enough information about the disorder. Some call a child living with Sickle Cell Disorder an ” Abiku ” or “Ogbanje”. Those who even know about sickle cell disorder believe that people living with the disorder do not live beyond the age of 21 years.
In fact there was a recent interview on Television Continental TVC where Prof. Cyril Otoikhian said that “Sickle Cell Disorder is a death sentence and it’s like putting money in a sachet and throwing the sachet away”. We believe as a foundation that there is an urgent need to create awareness about sickle cell disorder as well as dispelling the myths people have about sickle cell disorder. We believe sickle cell disorder is not a death sentence and people living with Sickle Cell Disorder can live a happy and productive life just like Mrs Abiatu Laguda -Onikoyi, the oldest Woman living with Sickle Cell Disorder in Nigeria.
PDC: What spurred you to be a part of sickle cell advocacy and not other forms of advocacy?
WO: My passion for sickle cell advocacy started when I lost two siblings, as earlier said, Anthony aged 29 a graduate of Biochemistry and Mary, a graduate of Law to Sickle Cell Disorder within a space of six months. They died not really because of sickle cell disorder but because of poor management of sickle cell disorder. We decided that instead of grieving over the trauma of losing two loved ones, there was need create awareness about sickle cell disorder to communities, schools, universities and NYSC orientation camps.
I have never been more fulfilled in the mission of providing care, advocacy and research for people living with Sickle Cell Disorder because apart from being a warrior, that is a person living with Sickle Cell Disorder, I also have opportunity to impact on the lives of people living with Sickle Cell Disorder, giving them hope as well as partnering with the government to provide policies that would promote efficient and affordable health care for people living with Sickle Cell Disorder.
PDC: What are the various programs of my organization about increasing awareness on Sickle Cell Disorder?
WO: Tony May Foundation has been working very hard to fulfil its mission of providing care, advocacy and research for people living with Sickle Cell Disorder in Nigeria. Since 2011, we have provided free monthly medications to over 1000 people living with Sickle Cell Disorder in Lagos State. We also partner with St. Joseph Catholic Church Mission Clinic, Kirikiri Town to provide a 50% discounted treatment on a monthly basis so that people living with Sickle Cell Disorder can have access to checkups and treatment. At our monthly Sickle Cell clinics, we educate them about innovative ways to manage sickle cell disorder.
We carry out awareness campaigns in communities, schools (primary to tertiary), communities, public places, National Youth Service Corps (NYSC) orientation camps among others because we believe that that is where prospective life partners can be found and there is need to properly enlighten them about the need to know their genotype and find out if their genotype is compatible with their life partners.
Last year, Tony May Foundation won a grant to provide self-care toolkit to 300 people living with Sickle Cell Disorder in Kirikiri and Ajegunle communities. The outreach made a successful impact on our beneficiaries because 80% of them acknowledge that the self-care toolkit helped to reduce the frequency of Sickle cell crisis. This had a huge impact on our organization so we decided to extend the outreach to Edo State.
On the 22nd of June, 2018, Tony May Foundation provided 150 self-care toolkits to people living with Sickle Cell Disorder at the Sickle Cell Centre, Benin City, Edo State. This was carried out with the support of Edo State Government and Sickle Cell Centre Benin City. We are also looking for more innovative ways to create extensive awareness about sickle cell disorder as well as to reduce the burden of sickle cell disorder significantly in Nigeria.
PDC: According to statistics, there are over 150,000 children born with the Sickle Cell Disorder annually, what is being done to ensure this number reduces substantially?
WO: As a Foundation, we believe that the best way to reduce the high of sickle cell disorder births is to ensure that would-be couples are aware of their genotype, and that of their spouse. Also, they are made to know the effect of getting married to a partner with an incompatible genotype, for example, a partner with an AS genotype getting married to another partner with an AS genotype or a partner with SS genotype getting married to a partner with an AS genotype. The need to be informed and make the right choices. Tony May Foundation as well as the coalition of sickle cell NGOs have been carrying out awareness campaigns from time to time. This is all in a bid to reduce the frequency of Sickle cell disorder births in Nigeria.
PDC: It has been announced that the Federal Government has approved the mass production of a Sickle cell drug in partnership with May and Baker, do you think this will help patients with Sickle Cell Disorder to avert crisis?
WO: I believe this is a welcome development and I would like to thank May and Baker as well the Government for signing the MOU to commercialize Niprisan in Nigeria. The question is ‘how affordable and accessible would it be for a person living with Sickle Cell Disorder in Nigeria?’ The financial burden that sickle cell disorder pose on patients are really unbearable. Most of our beneficiaries cannot afford some sickle cell disorder medications for example, Hydroxyl urea because it is expensive and these patients and their caregivers who as a result of the frequency of their sickle cell crisis cannot maintain a full time employment. So it goes beyond just mass producing medications for sickle cell disorder. The Government needs to provide a policy that would provide effective management of sickle cell disorder. There is also the need to have a universal health coverage for all Nigerians especially people living with Sickle Cell Disorder to reduce the financial burden as well as to increase their well-being.
PDC: Your organization operate from Lagos, how do you reach those in the hinterland so as to educate them on Sickle Cell Disorder?
WO: You would agree with me that there are some hinterlands in Lagos State where people have no idea about sickle cell disorder. Tony May Foundation has carried out awareness campaigns in Ogbowankwo communities in Lagos State, Somolu market, Kirikiri Town as well as other communities in Lagos State. We hope to extend our impact beyond Lagos State and we recently achieved that through the Sickle Cell outreach program we recently had in Benin. We anticipate taking these awareness campaigns to many communities and states in Nigeria over time.
PDC: Religious organizations are known to be involved in counselling and conducting marriages, how supportive are they in passing the message of sickle cell disorder to intending couples?
WO: You are right. Religious organizations really play a great role in ensuring that intending couples know their genotype before getting married. Most religious organizations even as a matter of policy make sure that intending couples produce a genotype certificate before getting married but experience has shown that some couples conduct those tests in quack laboratories and the couple is found to be genotype compatible. When they start bearing children, they discover that they have a child living with Sickle Cell Disorder. In fact, some intending couples produce fake genotype certificates just for them to get married while some couples who find out that their genotype is not compatible (that is AS and AS or SS and AS) go ahead to get married with the belief that God will prevent them from having children living with Sickle Cell Disorder.
While it is true that intending couples are free to make choices, I would suggest that religious organizations should partner with Sickle Cell organizations to provide genetic counselling to intending couples so that they are fully informed about the choices they make as well as its effects.
We also advise that people should be aware of their genotype before getting too involved in a relationship.
PDC: It has been alleged that many NGOs get international grants but divert it for personal usage, what are the various ways of ensuring that NGOS are accountable to their donors?
WO: Well we are all aware that there are bad eggs exist in every industry. It is true that some organizations get international grants but divert it for their personal use but there are also some NGOs who are committed to a cause, they get grants to carry out projects and diligently carry out the project till its completed. Personally speaking, if you are passionate about a cause or your organization’s mission, you owe a duty to be accountable to grantor or donors. As a non-profit organization, it is a duty to provide reports on how the funds was utilized. Some donors actually include measurement and evaluation plans in their grant proposal requests. This is to ensure that not only is the project carried out but it has impacts on the target audience.
Impacts can be measured through interviews with the beneficiaries, questionnaires, direct contact with the beneficiaries to understudy the change in life style as a result of the project. Social media can also be a useful tool in reporting the impact of a grant project.
PDC: What’s your advice to Sickle Cell Disorder patients on how to live a healthy and longer life?
WO: My advice to Sickle Cell Disorder patients also called “Warriors” or “Raregems” (We don’t call them patients) is that they can live healthy, productive and fulfilling lives. Sickle Cell Disorder is not a death sentence. Sickle cell disorder can be greatly managed through frequent hydration. Drink a lot of water at least three liters a day. Take your vitamins regularly. Folic acid helps in the production of red blood cells which is frequently destroyed as a result of the Sickle cell disorder. Prevent mosquito bites by sleeping under a mosquito treated net. Also, take antimalarial tablets to prevent malaria infection. Malaria triggers sickle cell crisis. Avoid extreme temperatures like too hot or too cold weather. Make sure you go for regular checkups. Ensure you eat balanced diet regularly, stay informed about sickle cell disorder. There are so many innovations going on in the area of Sickle Cell treatment.
There are so many useful information about sickle cell disorder. We also have a sickle cell disorder handbook that provides useful information you need to know about living healthy with the condition. Join Sickle Cell clubs because a problem shared is a problem half solved. At the Sickle Cell clubs, you would not only learn more about sickle cell disorder but you have opportunity to interact with people living with Sickle Cell Disorder and encourage one another. Do what makes you happy and live out your dream to the fullest. You can be anything you want to be if you believe.