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ON April 16, 2020, in the middle of the COVID-19 lockdown in Nigeria, pregnant Hauwah Abdulkareem, 34, a resident of Ilorin, who lives with Sickle Cell Disease (SCD) approached the University of Ilorin Teaching Hospital (UITH) while she was suffering from the vaso-occlusive crisis.
The mother of two said she was astonished when she got to the UITH and was told to go back home, although she held a referral form from a professional hematologist, she was told that her condition was not an emergency case
“The doctor, whose name I can’t recall told me the hospital was only attending to those showing symptoms of COVID-19 or emergency cases,” Abdulkareem recounted.
The woman, who was in her second trimester, said the crisis was eating her up, and she was scared for her life and that of her yet to be born baby when she was turned back at the hospital.
“I was having severe bone pains and couldn’t even walk, yet the doctors at the UITH thought my condition wasn’t severe enough to guarantee me an admission.
“There and then, I started making calls before I was finally admitted into the hospital. Many thanks to the hematologist for her prompt intervention,” Abdulkareem told The ICIR.
While Abdulkareem was fortunate to be admitted into the hospital after her doctor’s plea, many others who are also living with sickle cell disease weren’t that fortunate. They were not only denied proper health care but were confined at home while struggling to survive during the lockdown.
Trapped at home in crisis
A sickle cell crisis, according to American Family Physician Journal, is pain that can begin suddenly and last several hours to several days. It happens when sickled red blood cells block small blood vessels that carry blood to the bones.
It might cause those with sickle cell to have pain in their back, knees, legs, arms, chest, or stomach. The pain can be throbbing, sharp, dull or stabbing. How often and how bad the pain gets varies a lot from person to person and from crisis to crisis.
Due to the lockdown that shut many Nigerians out of the hospital, many Nigerians, particularly those living with sickle cell disease were not only terribly affected but were trapped at home to deal with their crisis.
In late March, 2020, 24-year-old Breakthrough Adekunle, who was born with sickle cell disorder, was on a visit to her Aunt in Owerri when the Federal Government placed a ban on inter-state movement, he had one of his reoccurring crises – vaso-occlusive there.
“I fell sick during the pandemic and was unable to access the hospital. I wasn’t even in Lagos then, I was on a visit to my aunt in Owerri.”
And he couldn’t approach the hospital because he had never used any hospital in the state before.
Adekunle was therefore trapped at her aunt’s place in Owerri, while battling several forms of health crises ranging from stomach, back and chest pains.
“It was one of the most painful crises I have ever had; it would start at night and last for 2 days. I saw hell, my Aunt thought I was going to die,” Adekunle recounted the horrible crisis.
Like Adekunle, 12-year-old Shakirat Adebayo was another sickle cell patient who was trapped in crisis during the lockdown. The young girl, who lives with her parents in the suburb of Ketu, Lagos State was said to have experienced leg ulcer during the lockdown but was not given any medical attention when taken to the Gbagada General Hospital in Lagos.
Her mother, Afusat Adebayo, who spoke with this reporter, narrated how devastated she felt when they were turned back at the hospital.
“We were not even allowed into the hospital premises before we were turned back home.
“The person who addressed us together with other patients outside the gate said the hospital was only attending to those with coronavirus symptoms or emergency cases,” says Adebayo.
Left with self-medication
According to a Pan-African medical journal, 60 to 90 percent of Nigerians adopt self-medication, with the attitude prevalent among the undergraduate students of Nigerian higher institutions, where 67 percent of them is said to indulge in self-medication.
While many Nigerians indulge in self-medication because they can’t afford the hospital bill, some other people embrace self-medication because they can’t access the health centres.
For instance, some Nigerians living with sickle cell disease who spoke with this reporter said they had no choice but to adopt self-medication when they couldn’t access the health facilities during the lockdown.
Breakthrough Adekunle, who has been tagged a “sickler” by his peers and couldn’t proceed to higher institution after leaving secondary school in 2012 because of his incessant crises said he had no choice but to adopt self-medication during the lockdown.
“When I couldn’t access the hospital and was down with vaso-occlusive, I had to start using Diclofenac, which was not even effective.
“I was taken to a nearby pharmacy, where I was given Pentazocine and Promethazine,” Adekunle told The ICIR.
Afusat Adebayo, whose daughter was turned back at the Gbagada General Hospital, said she had no choice but to start treating her daughter’s leg ulcer with balm and hot water.
Sheriff Ajayi on his own part did not even bother to approach the hospital when he had his own crisis during the lockdown.
The 33-year-old teacher, who lives with Sickle Cell Disease in Ipaja Ayobo, Lagos, said his experience at Igando General Hospital when his niece was sick discouraged him from approaching the hospital.
Ajayi, who said he was faced with COVID-19 symptoms, said he couldn’t even attempt to approach the hospital because of how the doctors abandoned his niece, another sickle cell patient who had a low PCV and needed blood during the lockdown.
“I had COVID-19 symptoms such as catarrh, cough, runny nose, loss of sense of smell and taste but couldn’t approach the hospital because of how my niece was abandoned a month earlier before my illness.
“I treated myself with steam inhalation, Black Seed and Vitamin C,” Ajayi told The ICIR
The death of Glad Odu
While most of those living with Sickle Cell, who spoke with this reporter, shared their horrible experiences during the lockdown, Glad Onyekachi Odu did not live to tell her story, she died during the lockdown.
Odu, who was a 20-year-old final year student of the Health Education department at the University of Benin died around 4 a.m on Monday, July 6, 2020.
Her sister, Victory Odu, who spoke with The ICIR, said her sister had battled several sickle cell crises before succumbing to Malaria on that fateful day.
She said her younger sister who could not access the University of Benin Teaching Hospital because of the lockdown took her last breath at a nearby private hospital.
“My sister only complained of Malaria on Sunday, July 5, and was taken to a private hospital where she died at the early hours of the following day.
Her parents were grief-stricken and unwilling to talk about the loss of their daughter.
The elder Odu said her sister was a sickle cell warrior who had battled vaso-occlusive and leg ulcers for several years before her death.
“My sister battled sickle cell crises throughout her life. She collected over 70 pints of blood during her lifetime and had a severe leg ulcer that kept her out of school for months which terribly affected her self-esteem. She even attempted suicide at a point.
She added that her parents were really supportive and spent heavily to keep her alive but still lost her in the end.
Burden of Sickle Cell Disease in Nigeria
Globally, Nigeria currently has the highest rate of sickle cell disease. The country is estimated to bear the burdens of 30 percent of the sickle cell patients in the world.
Isaac Odame, a professor and the director of the Global Sickle Cell Disease Network, a community of clinicians and scientists who study the disease globally disclosed to Africa Check that Nigeria bears 30 percent of the global sickle cell burden.
Odame added that one in every three babies born with sickle cell in the world is a Nigerian.
Similarly, a research on the global burden of sickle cell in children under the age of five revealed that as of 2010, Nigeria, India, and the Democratic Republic of Congo represented 57 percent of the annual number of newborns with sickle cell anaemia.
The research further stated that 91,000 babies in Nigeria were estimated to be born with sickle cell anaemia in 2010.
The researchers, however, submitted that Nigeria and the Democratic Republic of Congo will probably still be the countries most in need of policies for the prevention and management of sickle cell anaemia in 2050.
According to the National Health Institute (NHI), the childhood survival rate of children with sickle cell in Nigeria is 10 percent.
NGOs to the rescue
Although, Nigeria has the highest burden of sickle cell disease in the whole world, yet the country had no plan for this vulnerable group during the lockdown.
Unlike Nigeria, some other countries with significant populations of people with SCD are studying the implications of COVID-19 on these set of people and are developing measures to assist them.
The International COVID-19 Sickle Cell Disease Registry currently coordinates studies, figures and information on people living with sickle cell who have contracted COVID-19.
In the US, with approximately 70,000 to 100,000 people living with sickle cell, associations of haematologists and other public health agencies have outlined protocols for treating and managing COVID-19 patients with sickle cell.
The US Centers for Disease Control and Prevention (CDC), also issued special precautionary advisories directly to patients living with chronic diseases such as sickle cell.
Similarly, in the United Kingdom, where there is another phase of lockdown due to the second wave of COVID-19, the government has created a list known as the Shielded Patient List for the vulnerable like people living with sickle cell in the country.
This set of people are regarded as clinically extremely vulnerable and are being advised by the government via letters on how to protect themselves from contracting coronavirus.
The government of Ghana through its ministry of health signed a Memorandum of Understanding with global medicines company Novartis to improve the diagnoses and accelerate treatment for people with Sickle Cell Disease (SCD).
With the MoU, Ghana became the first African country committed to offering the global standard care for people with SCD.
In contrast, Nigerians living with sickle cell disease after been abandoned by the government lived at the mercy of Non-Government Organisations (NGOs), during the lockdown.
Halimah Ganiyu, a resident of Ibadan, Oyo State, said the fear of catching COVID-19 made her stay indoors during the lockdown before the Sickle Cell Aid Foundation (SCAF) came to her aid.
“I was extra cautious and I still am because I know I might not survive it if I catch the virus. So the fear of having it made me extra cautious. During the lockdown, I didn’t step out.”
She said the organisation gave her foodstuff, drugs and face masks to protect herself during the lockdown.
“I was given 1kg rice, a couple of spaghetti and macaroni, spices, sugar, salt, face mask; all Dangote products and the typical everyday drugs that sickle cell patients use.”
Yejide Adewakun, the vice president admin and legal adviser for SCAF said the organisation is committed to the welfare of people living with sickle cell.
It, therefore, saw the pandemic as an avenue to further ensure that the welfare of that group of vulnerable people are well taken care of, hence the reason for the creation of SCAF Registry for Persons Living with Sickle Cell Disorder.
“Recognising this challenge and the potential impact of COVID-19 on persons with SCD in Nigeria, SCAF sought to register sickle cell warriors. Our aim was to ensure the welfare of those living with SCD during the pandemic and beyond.
“We also used this registry to identify persons and provide them with free essential medications and basic supplies during the imposed quarantine period across the country. In addition, we have partnered with a mental health organisation to provide access to platforms for emotional and mental health support for persons with SCD on the registry.”
Similarly, Damilola Ajibade, the founder of Damilola Sickle Cell Foundation, another foundation committed to the welfare of people living with sickle cell in Kwara State, said the foundation saw how helpless some people living with sickle cell were during the pandemic and decided to assemble a group of medical practitioners to help them out.
“During the lockdown, our doctors were able to administer drugs virtually for those who had slight crisis.”
Experts proffer solution
In order to achieve adequate welfare for those living with sickle cell disease in Nigeria, experts have urged the government to prioritise their health, consider them in future lockdowns and create an healthy environment for them to grow without being stigmatized.
Damilola Ajibade, founder of Damilola Sickle Cell Foundation said, “Apart from considering people living with sickle cell during any pandemic in the country, there is a need for the government to assist people living with sickle cell disease by creating more enabling environment for them to grow.”
She further opined for the need for the government to collaborate with non-governmental organisations in ensuring adequate medical care is given to them.
“By working with non-governmental organisations committed to the welfare of people living with sickle cell in Nigeria, the government can ensure adequate medical care is given to these set of people and as well, eradicate the stigmatisation against them.”
In his own words, Olaniyi Owoeye, a consultant haematologist with Synlab Nigeria, advocated the need for government to ensure the availability of medications to solve the painful crisis people living with sickle cell usually encounter.
He added that there is a need for government to always ease mobility for people living with the sickle cell during a pandemic like COVID-19
“The availability of medications for their painful crisis, as well as other complications, should not be affected by the lockdown. Also, they should be afforded ease of mobility during such periods.”
Government declines comment
The ICIR tried to speak with government officials, particularly at the federal level and in Lagos state for their comments on what the government is doing to prioritise the healthcare of those living with sickle cell disease, especially during a pandemic like COVID-19.
Olujimi Oyetomi, the director of information/head of media & public relations at the federal ministry of health, did not respond to the questions by this reporter, he instead said he is at the verge of leaving the ministry due to his health.
“Although, the website and social media of the ministry bear my details I am no more there due to my health.”
Oyetomi also declined the request of this reporter on releasing the contact of the minister or anyone to speak with at the ministry.
An email sent to the federal ministry of health also was neither acknowledged nor responded to.
Tunbosun Ogunbanwo, the director of public affairs at the Lagos State Ministry of Health also declined comment.
This report was facilitated by the Wole Soyinka Centre for Investigative Journalism (WSCIJ) under its Free to share project.