World Sickle Cell Day: Patients suffer neglect, high treatment cost

Experts urge subsidized treatments, massive awareness, special centres   By Ojoma Akor (Abuja), Christiana T. Alabi (Lagos), Mohammed I. Yaba (Kaduna), Usman Bello (Benin), Hameed Oyegbade (Osogbo), Richard P. Ngbokai (Kano), Eyo Charles (Calabar), Iniabasi Umo (Uyo) & Umar Muhammed (Lafia)   Today is world Sickle Cell Day and Nigerians suffering from the disease have […]

• Experts urge subsidized treatments, massive awareness, special centres

 

By Ojoma Akor (Abuja), Christiana T. Alabi (Lagos), Mohammed I. Yaba (Kaduna), Usman Bello (Benin), Hameed Oyegbade (Osogbo), Richard P. Ngbokai (Kano), Eyo Charles (Calabar), Iniabasi Umo (Uyo) & Umar Muhammed (Lafia)

 

Today is world Sickle Cell Day and Nigerians suffering from the disease have lamented the high cost of managing the illness, stigma they face from family and other people, as well as general neglect of their plight by government and other stakeholders.

Nigeria has the highest burden of Sickle Cell Disease (SCD) in the world and is also the top sickle cell endemic country in Africa.

Over 40 million Nigerians suffer from the disease according to experts.

Sickle Cell disease is a genetic blood disorder that affects a person’s red blood cells. It affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body.

The disorder causes normal round and flexible blood cells to become stiff and sickle shaped, which in turn stops the blood cells and the oxygen they carry from moving freely around the body.

According to Prof Obiageli Nnodu, a haematologist and Nigerian National Coordinator of Consortium on Newborn Screening in Africa (CONSA), an estimated 150,000 babies in Nigeria are born with Sickle Cell Disease (SCD) annually.

Nnodu, who is also the Director Centre of Excellence for Sickle Cell Disease Research and Training, University of Abuja, said many of them do not live past the age of five because of lack of access to diagnostic testing and comprehensive care.

 

‘Kano is the epicentre of sickle cell in Nigeria’

A haematology consultant in Kano, Dr Ibrahim Musa, said there are indications that the state has the highest number of individuals suffering from sickle cell anaemia in Nigeria and likely the worst hit state in the world.

He revealed that between 100 to 250 cases of sickle cell disease are seen in each of the major hospitals within Kano metropolis alone, even as the cases keep increasing.

This he relates partly to cultural practice of the people which allows marital ties between partners from the same extended family with a history of genetic disorder.

He said consanguineous marriages have perpetuated the preponderance of sickle cell disease in the state, making it likely the most endemic state in the world.

“If your parents or you have it in your family and you inter-marry, you are likely to produce offspring that would have the disease. So, taking into cognizance high population, high rate of consanguineous marriage and preponderance of malaria in Kano, all have contributed basically to the high number of sickle cell disease in the state.”

He said at the Aminu Kano Teaching Hospital AKTH, there are two clinics that see individuals with sickle cell disease. Children less than 16 years are seen in the paediatric clinic while those above 16 years are seen in the adult clinic.

“So, with the AKTH combination of basically the adults and children, we could say that 200 to 250 children are seen every week. If you go to Murtala Specialist Hospital, in the paediatric clinic, they see up to 100 children every week and in the adult clinic, they see about 200 patients every week. There are other hospitals like Asiya Bayero for instance, because some of these sufferers are really poor, they go to those clinics and the number is much there, sometimes even more than in the tertiary care,” he said.

He explained that the prevalence of the disease in the state has been the same for the past 8 years because not much is being done to scale down the prevalence as people keep having consanguineous marriages even without knowing their genotype status.

He advocated for deliberate policies to stem the tide of consanguineous marriage and entrench premarital genetic counselling and testing among intending couples.

Sufferers lament

Narrating his ordeal, a sickle cell survivor, Kayode E. Rotimi, said the cost of caring for a sickle cell patient is very high and almost impossible for the poor to afford.

He said, “I was born with this illness and it has really limited a lot of things I would have loved to do.

“Sickle cell patients have not really been able to tell what to do or not to do to stop the attack we experience. We are usually told not to stress ourselves; not to go into the rain; not to carry heavy things but they don’t just end there as too much rest could cause an attack, over feeding could cause it, hunger could cause it so anything could actually be the reason for the pains.”

He said aside pains, sickle cell disease sufferers also experience constant long days of erection that could lead to infertility. He urged government to establish special hospital for sickle cell disease in each state of the country.

Malama Maryam Husseini, the mother of 13-year-old Salim, a sickle cell patient in Kano, lamented the difficulty in accessing care at the tertiary facility in the state because of the cost.

She said her son was diagnosed for sickle cell disease at his 8th month, and has been on treatment at Asiya Bayero Paediatric hospital.

She said she was forced out of the tertiary hospital in the state due to high cost of treatment.

Another survivor, Aderonke Adejare, deplored discrimination against people with Sickle Cell Disease (SCD) and called on Nigerians to stop isolating and stigmatizing them.

According to her: “Fighting the disease is hard enough but being treated differently by people because they have SCD just makes life even worse. Embrace people with SCD because they need the love of family and friends like everyone else.”

Hamindu Tanko, a 27-year-old sickle cell survivor in Nasarawa State also lamented that members of the public always stigmatize people living with the disease.

“People always tell me that I will not live long because I am a sickle cell patient, and each day of my life, I always live in fear and panic,” he said.

He explained that he always cried because of the severe pain, right from when he was little boy and his late father used to take him to hospital where he was given drugs that he took daily.

He said the disease has left him with a disability in one leg as he could no longer walk normally. He added that an injection he has been taking all his life prevented him from losing the second leg.

The sickle cell survivor said despite his ailment, he struggled to obtain a National Diploma certificate in business administration and management from  Isa Mustapha Agwai 1 Polytechnic Lafia, and is currently running his Higher National Diploma in the same course.

He said because of his condition, he doesn’t attend lectures sometimes for three weeks, particularly during rainy season, because of cold weather.

He commended the state government for establishing a school for people living with disabilities in the state, saying the reduction of fees for students with disabilities has gone a long way in encouraging some of his colleagues to develop interest in education.

He said his major challenges are lack of funds to buy drugs, adding that each time he eats noodles and takes cold drinks, he always feels a symptom associated with the disease.

 

He said he buys Diclofenac 75 mg one card five days at the rate of N1000, but now it is N1200, adding that in a week, he spends N400 and in a month is N5000.

He called on both the federal and state governments to assist him and other people  suffering from the disease.

Malam Abdullahi Ibrahim Musa, the Administration Officer, Sickle Cell Community Kano State, said the cost of drugs and discrimination in job recruitment are major problems for survivors.

He said, “I was diagnosed with this condition since I was six months old and now, I am 30 years old. And the major challenge we face every now and then is in accessing the prescribed drugs.

“Sometimes, the drugs are expensive and even with your money, because the drugs are usually controlled, if there is any emergency you hardly get drugs directly from pharmacy without doctor’s prescription.

“And for some of us that are students, I appeal that there should be some measures put in place to carry along sickle cell patients especially during exams; because on several occasions some of us are being made victims of circumstances because they have an attack during exams period. Some have carry-overs, spilling over at various levels of their education.”

Yahaya Faruk who was born with the disease more than 40 years ago said a major way to reduce the burden of the disease is through bone marrow transplantation but many parents whose children have the disease cannot afford it.

He said, “Bone marrow transplantation helps save patients by improving their blood cells. The cells are in the bone marrow so the moment the transplant is successful, the person will be normal.”

Ways to make treatment, life easier – survivors

A 55-year-old survivor, Malam Shehu Mohammed, said the way to make access to treatment optimal and life easier for sufferers is to subsidise drugs and also provide special areas for sick cell patients called haematology department in all the hospitals.

“There is need to subsidise drugs and make the costs cheaper. Sickle cell survivors should also have free access to the National Health insurance Scheme (NHIS). Immediately they confirm you are ‘SS’, they should give you free medical care all through,” he advised.

He said health workers should also be trained on handling SCD sufferers as some of them discriminate the patients.

He also called on government to give special consideration in job placement for Sickle Cell disease sufferers to address the stigma associated with employment.

He said government could consider giving a certain percentage to people with special needs like SCD out of the total number of people it wants to recruit for employment.

He said this is important as till date some employers shy away from employing sufferers for fear of their falling ill and staying away from work.

He advised parents and family members not to discriminate their children with the disease but treat them like every normal child. He said they should also give them all necessary support and attention. “Don’t treatment them as outcasts, feed them well, and don’t delay their treatment,” he said.

He advised people living with the disease not to give up, not to leave anything to chance, and stick to their treatment regimen.

He said Sickle cell disease is not a death sentence, and the society should stop seeing it as such.

Yahaya Faruk, a sickle cell survivor, said the only way to reduce the burden in the country is for couples to know their genotype before marriage.

He said: “there is need to make available folic acid tablets that improve blood cells for people with sickle cell, especially those who can’t afford it. Government must find a way to provide centres where people will go for counselling.”

Debola Alabi, a business man in Osogbo who is also a Sickle Cell survivor, said giving proper care to sufferers make them live long and happily. He said the stigmatisation against sickle cell patients should stop, while advising prospective couples to be sure of their status before getting married.

The President Edicharson foundation for sickle cell in Edo State, Comrade Charles Edigin, lamented that governments at all levels have virtually abandoned sickle cell sufferers to their fate

He said to change the narrative, governments should create massive awareness about sickle cell disorder so that people at the grassroots will be aware of the disorder, what causes it and how to avert it.

He said the federal and state governments should support sickle cell centres so that sufferers can have access to treatment.

He said currently, sickle cells treatment centres across the country are mere consulting clinics without drugs and medical personnel to man the centres.

“The centres are not operating 24 hours operation for sickle cell patients and attack on sickle cell patients usually happened at night.”

He said following the development, many sickle cell sufferers who had attack in the night have died because there was no 24 hours treatment for them.

President of the Sickle Cell Club in Calabar and a survivor of the disease, Deborah Olory, called on government and non-governmental organisations to help establish pain centres in the country.

She said pain centres will tremendously help reduce pains and stress of SCD sufferers, and also curb drug addiction.

Talking about her own personal experience, Deborah said it “has been full of struggle to stay alive, to go to work is hell, to stay in a relationship is a problem.”

She said sickle cell sufferers also suffer from insomnia. “We struggle to sleep. Our life is full of crises; in and out of hospitals, always taking drugs.”

Rotimi, a survivor, advised intending couples to check their genotype before marriage.

“We should never agree to the statement that says ‘love is blind’. The only way to avoid this is to check your genotypes before you get married. AS can’t marry AS, no matter what, just avoid it, just as AS cannot marry SS it should not be allowed; else you would end up getting happy but you would put a life in pains and total regret,” he said.

Another survivor, Aderonke Adejare, said getting people with Sickle Cell Disease the essentials, proper diet, medication, ability to visit clinic for regular check-ups, and access to good healthcare would reduce the morbidity and mortality of the disease.

The 18-year-old undergraduate at Yale University USA, who donated N125,000 to Sickle Cell Foundation recently said more Sickle Cell centres are needed across the country to help in the diagnosis and treatment of the disease.

How to stem the tide of the disease – Experts

A consultant haematologist at the University of Calabar Teaching Hospital (UCTH), Dr Ofonime Essien, called for counselling before marriage, creation of awareness amongst the people, and early detection.

“It is advisable that efforts be made to ensure that it is detected early enough. It can be as early as one day old. There are advance management methods now to handle it. There is even a stem cell plant in Benin,” she said.

Dr. Lucky Okpetu, a consultant haematologist at General Hospital Gusau, Zamfara State, said the burden of sickle cell can be reduced by Hb electrophoresis (genotype) test before marriage.

He added that access to treatment can be improved by empowering Primary Health Care centres (PHCs) at the local government levels to bring health care to the door step of the rural dwellers, who are often time deprived of good health care.

Also, making the NHIS accessible to all, he said, will improve access to treatment and make life easier for sickle cell patients.

Dr. Lucky identified Stem cell transplant, also known as bone marrow transplant as the cure for sickle cell.

He therefore urged the government to provide transplant centres and train more specialists. With this, the sickle cell burden in the country will be reduced.

He suggested that stakeholders can assist sufferers by making the National Blood Transfusion Service (NBTS) centres more functional.

He also encouraged non-remunerated blood donation, to assist those that may need blood transfusion as well as establishment of transplant centres in the six geopolitical zones of the country, to provide cure for sickle cell patients.

Dr. Victor Alade of the Department of Obstetrics and Gynaecology, Dalhatu Araf Specialist Hospital Lafia, called for advocacy and sex education among the populace, noting that this would make them know the implication because when the problem comes, the issue of ‘I love you’ will be out of it, which will make it very difficult to manage the SCD sufferer in the family.

Dr. Alade said SCD sufferers must be sensitized on how to cover their bodies properly, during cold and hot seasons, fluid intake and infection that could trigger crises, particularly malaria.

He revealed that in Nasarawa State, there is no central blood transfusion service, so when they have crisis, the blood will not be properly screened and that will make them contract infections.

While urging government at all levels to ensure that adequate SCD centres are established, he said requisite experts should also be provided in such centres.

The Executive Director of Sickle Cell Warrior’s Care and Healthy Living Foundation in Akwa Ibom State, Dr Rhoda Asuquo, said the promotion and public education of sickle cell disease should be as intense as the advocacy for HIV/AIDS, tuberculosis and other ailment, noting that government’s involvement would help to prevent and control the spread of the disease.

She said the involvement should also extend to the churches and other religious organisations who are involved in the solemnization of marriages, adding that lack of proper awareness was partly responsible for the prevalence of the disease.

The Executive Director, who stated that the struggle was real for survivors of the disease, encouraged government to subsidize the cost involved in the treatment and management of sickle cell.

She further advocated the legislation of laws that would both support sickle cell survivors as well as discourage marriage among persons with the AS, SS genotype.

Dr Asuquo revealed that the fear of stigmatization has prevented many survivors of the disease in the state from identifying with the foundation, noting that though the foundation targets young persons, it does not exclude other persons.

Asuquo, who said the foundation was working towards tackling the problem of issuing wrong genotype results, said it was necessary to authenticate the source of genotype results as many persons have been victims of wrong results which have become fatal.

Minister of Health, Dr Osagie Ehanire, said the burden of sickle cell disease in the country was further worsened by transfusion, hepatitis B, hepatitis C and HIV/AIDS.

On Nigeria’s effort in stemming the disease, he said that the National Policy and Strategic Plan of Action for the Prevention and Control of Non-Communicable Diseases (NCDs) was revised to include SCD.

The minister explained that the purpose was to ensure comprehensive care for all SCD patients, provide evidence-based information, institute a database for universal new born screening and genetic counselling, strengthen the structure and capabilities for patient management and to conduct research.