Aisha Edward, President of Association of People Living With Sickle-Cell Disease, has accused medical doctors, laboratory scientists and officials of the Anambra State Ministry of Health of exploiting the condition of Sickle Cell Disease (SCD) victims for money. Aisha, who is living with SCD, made the allegation in an exclusive interview with SaharaReporters. According to her, the system is loaded against SCD victims through fraud perpetrated by government officials enabled by the law as well as churches and other non-governmental entities.

She told SaharaReporters that sickle cell disease patients are faced with many challenges, including official exploitation.

"One of the first challenges I had when I started this organization as a result of injustice against people living with the disease was that many people never believed that I’m a sickler probably due to how healthy I look. This is despite the fact that I have challenges with my left femur. Other challenges include battling lots of fraud aimed against persons living with Sickle Cell," she said. 

Instantiating the fraud, Aisha said the Anambra State Sickle Cell law enacted in 2002 neglects SCD victims.            

"Do you know that I took time to study that law and I was thinking that at least a paragraph will give room for a sickling child to have right to education or free medical care. Do you know that this law ended up empowering all these laboratory scientists, medical doctors and people in the Ministry of Health. These are the people that the law budgeted money for as if to say the victims are a specimen," she said. 

She explained that the law demands that schools and churches must request genotype certificates and enjoins traditional rulers to ask same of their subjects. On the other hand, Aisha said the law is silent about SCD victims.    

"The law says nothing about the victims. Nothing! The law benefits government officials, among whom the haematologists are the most prominent. The haematologist is a doctor is in charge of an SCD victim. These people passed that law without a single right for a sickler. No right to education and free medical care. Even provision of subsidized medical care is not there. There is no penalty for a sickler that goes ahead to marry a sickler. Their interest is only encouragement of production of sicklers and conduct of laboratory tests and after that, you pay and acquire a certificate," she said. 

Laboratory scientists, she said, collect blood samples and send to international organizations for money. 

"These people collect our blood samples and send them to the United Nations for classical fraud. The victims are not even benefiting from the investigation and after that they will now tell you they are doing research. How many researches have we been able to do in Nigeria? They have been doing this research since the year 2000 and the research is still ongoing and then some persons accounts will be getting fatter," she alleged 

Aisha said blood samples from the grassroots are sold to the United Nations by haematologists, who still bill patients.                            

"They still will tell you that their hospitals have facilities for sicklers and you'd still come and patronize them. And nothing is free. I know I have some patients who are usually demanding money from me to go for check-ups in Lagos and I ask if we don’t we have haematologists here in the southeast. This made know that these people are a cabal based in Lagos and Abuja. These people collect samples of sicklers from the grassroots after which the United Nations pay them," she stated.                            

Aisha added that haematologists are fond of deceiving SCD victims with the lie that their blood samples are being used for research. The lack of protection for SC victims, she explained, has yielded unsavory outcomes. For instance, forged genotype certificates have increased the prevalence of SCD. She also said many sicklers commit suicide. In addition, Aisha disclosed that parents hide their sickler children because they forged their genotype certificates before getting marriage.                    

"Two-thirds of them forged certificates  and laboratory scientists help them to forge it because they equally gain from it. Recently I arrested one man called Mr. Ben Oko at Amawbia in Awka South Local Government Area of Anambra State. I have written to the State Criminal Investigation Department  and Department of State Security. But the criminals are a powerful syndicate. They even attended the Public Hearing of the new Sickle Cell Bill that is currently with the Anambra State House of Assembly," she claimed.

She further alleged that the fraudsters, who include olive-oil selling pastors, herbalists and doctors, have senior Police officers in their pockets.

"My father sold about seven properties in Abakaliki because of the fraud by all these doctors, people in churches and even herbalists. Out of desperation after looking at my condition, my father was eager to do anything to make me fine and happy and this is why the present Anambra government is fighting so hard to criminalize marriages between Sickle Cell carriers through the new Sickle Cell Bill. Do you know that a Professor Okpara of the Department of Haematology at the University of Nigeria Teaching Hospital, who wasn’t even invited to the recent public hearing on the new Anambra State Sickle Cell Bill, stood up to oppose the Bill. I was shocked. I’m sure he saw the copy of the Bill and realized that if passed, it will criminalize most of their activities," said Aisha. 

She advised SCD victim to avoid falling to the wiles of fraudsters and criminals in health facilities and churches.

Aisha Edward advocates for persons with sickle cell disease in Nigeria

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