SPECIAL REPORT: Nigerians with albinism dying of skin cancer due to healthcare gaps

The Gabriels are more than just a family – they are siblings bound by both love and a shared struggle. From Ankpa Local Government in Kogi State, the seven siblings lived with albinism.

Their extended family rejected them because their mother gave birth to children with albinism.
Tragically, they are orphans, facing an overwhelming battle that has only grown harder with time.

Three of the siblings have already lost their lives to skin cancer: the first passed away some years ago, the second in November 2024, and the third, Roseline Gabriel, on 31 January. Despite efforts to raise funds for her treatment, Roseline, 41, succumbed to the disease at the National Hospital in Abuja.

Now, the remaining four siblings grapple with the uncertainty of who might be next.

In contrast to the Gabriels, Damilola Ibigbami, 34, from Osun State, seems to be more fortunate in her battle against skin cancer.

Having survived 12 surgeries, including nine nose reconstructions and three skull operations, she continues to fight. However, Ms Ibigbami’s luck may be running out, as she now urgently needs another surgery due to dehiscence —a condition where a surgical wound reopens, requiring immediate intervention and continued care.

Skin cancer and persons with albinism

Skin cancer is becoming an increasingly significant health concern, especially among persons with albinism (PWAs). Nigeria’s tropical climate, with its intense sunlight, places PWAs at heightened risk of this type of cancer.

Albinism, a genetic condition characterised by a lack of melanin, results in minimal protection from harmful ultraviolet (UV) rays, making these individuals more susceptible to developing skin cancer.

Research has shown that PWAs account for 67 per cent of patients managed for primary skin cancers, with 61 per cent of these patients being under 40 years old.

Reports indicate that three to five persons with albinism die of skin cancer every six months, and only two per cent survive to reach the age of 40.

“The prevalence of skin cancer among PWAs is alarmingly high, with at least two persons dying every month in Nigeria from the disease,” the National President of the Albinism Association of Nigeria (AAN), Bisi Bamishe, said.

Ms Bamishe noted that the actual figures could be higher, as many cases are underreported. She explained that many PWAs are affected by skin cancer due to prolonged exposure to the sun during their childhood, which often manifests as skin cancer in adulthood.

Despite the high prevalence, low awareness of skin cancer and insufficient access to preventive care, coupled with PWAs’ lack of knowledge about the dangers of prolonged sun exposure and the absence of regular skin checks, worsen the situation.

Ms Bamishe said, “Skin cancer is prevalent among us because of lack of information. When we were growing up, the exposure was not there, and most of us stayed in the sun. There wasn’t knowledge that there was sunscreen to wear to protect our skin.”

She explained that individuals often delay seeking help when cancer symptoms first appear, either because they don’t recognise it as skin cancer or are unsure of how to proceed.

“By the time they report it, it’s usually too late – often by stage three, when little can be done to treat it effectively,” she said.

Delayed diagnosis, consequences

In 2010, Margaret Obisanya noticed a lump in her right ear. Initially thinking it was just acne, she later believed it to be a boil and treated it with shea butter, hoping it would disappear as boils typically do. However, it didn’t go away.

The lumps spread to her shoulder, back, and cheek, eventually starting to ‘melt.’ Her family assumed it was a spiritual attack and focused their efforts on spiritual remedies, unaware that it was skin cancer.

Unfortunately, Margaret passed away in July 2012, leaving her family wishing they had been better informed and sought proper medical care in time.

Twelve years later, Margaret’s sister, Victoria Obisanya, who also has albinism, has fought off more than six cases of skin cancer, all detected early.

“It will start like a blister, and people often ignore it because acne and blisters are normal to people. After some time, the blister becomes reddish and painful, and if care is not taken, it would degenerate into cancer and might lead to death. At least, that was the case with my sister,” Ms Obisanya told PREMIUM TIMES.

She also mentioned that she has experienced similar symptoms but immediately treated them: “I had one between my eyes and nose recently. As soon as I noticed it, I treated it, because if caught early, it can be managed.”

Similarly, in 2013, Wumi Alabi, who was in her late 30s at the time, discovered a sore on her neck. Initially dismissing it as an insect bite, she didn’t seek medical attention even when it started producing pus.

“I didn’t bother about treating it at first as it wasn’t affecting me. But after some time, it became painful, and the pus was coming out consistently. It was at this point that I started seeking medical help,” she told PREMIUM TIMES.

It took six years before Ms Alabi received treatment, which involved a successful surgery, including a skin graft taken from her thigh to cover her neck.

Financial and emotional burden

The financial burden of treating skin cancer in Nigeria is overwhelming, with the cost of surgeries, chemotherapy, and radiotherapy often far beyond what the average person can afford. For Ms Ibigbami, multiple surgeries and ongoing medical care have plunged her and her family into relentless financial strain.

A native of Ekiti State, she has been battling skin cancer since 2016. What initially seemed like a harmless pimple on her nose turned out to be skin cancer, setting her on a painful journey of treatments, surgeries, and recoveries.

Ms Ibigbami underwent chemotherapy and radiotherapy at the National Hospital, Abuja. However, after free treatment for persons with albinism was discontinued, she had to cover the costs herself – a financial burden she describes as unbearable.

Even after completing treatment, the nightmare continued. In 2019, three years after her initial battle, cancer resurfaced – this time on her head. It had spread so deeply that it affected her skull. A complex surgery in 2022 required part of her skull to be replaced with a mesh.

“I ran from one place to another,” she said, describing her desperate search for financial support to access treatment.

Although the surgery was successful, complications arose again in 2024. The mesh that had been placed to cover her skull opened up, and she was told it needed to be replaced, a procedure costing over N2 million, which she has not been able to raise.

For Roseline Gabriel, the financial hurdle was just as dire. Each chemotherapy session costs ₦200,000, with up to eight sessions required. Radiotherapy alone costs ₦900,000 per session. When her siblings couldn’t raise the funds, she was discharged from the hospital after just one chemotherapy session – paid for through support from the Abuja chapter of AAN.

Her younger sister, Priscilla Gabriel, said: “We are orphans, and our extended family has not been able to help. I had to take my sister home when we couldn’t afford further treatment, and the hospital bills kept piling up.”

As Roseline’s condition worsened, she was taken back to the hospital with no clear plan on how to pay for her care.

“The doctors asked us to do a brain test because they suspected the cancer had spread to her brain. We didn’t know where else to turn,” Ms Gabriel said.

Beyond the financial burden, persons with albinism battling skin cancer often face emotional distress, as many are abandoned by family and friends during their most difficult times.

Barriers to Treatment

Accessing treatment for skin cancer in Nigeria is a long, costly, and exhausting process, worsened by the lack of comprehensive healthcare coverage and late diagnosis. Many PWAs struggle to find the right care, often moving between states in search of treatment.

When Ms Ibigbami was first diagnosed, she had no clear path to treatment. She moved from Lagos to Ondo, then to Abuja and Kwara, undergoing different phases of care. “The referrals and hospital visits were emotionally and financially draining, but I had no choice but to keep going,” she said.

For Ms Alabi, the journey was just as tough. She spent six years visiting chemists, private hospitals, and auxiliary nurses, hoping to heal. It was not until she reached Wesley Guild Hospital in Ilesa that she was diagnosed and referred to Obafemi Awolowo University Teaching Hospital, Ile-Ife.

Through TAF Africa, she later secured free surgery at the National Hospital in Abuja in 2019.
Many PWAs with skin cancer cannot afford treatment, leading to preventable deaths. Free skin cancer treatment was once available at the National Hospital, Abuja, but was discontinued during President Muhammadu Buhari’s administration – an initiative advocacy groups are pushing to restore.

Lagos Government blazing the trail

To improve access to treatment for PWAs with skin cancer, the Lagos State Government, through the Lagos State Office for Disability Affairs (LASODA), funded free treatment at LASUTH in January 2024.
The Dermatology, Plastic Surgery, and Oncology units are managing the initiative, providing surgical care, chemotherapy, and radiotherapy based on severity.

LASODA General Manager, Adenike Oyetunde-Lawal, in an interview explained that the skin cancer treatment programme was borne out of the desire to provide adequate care to PWAs.

Mrs Oyetunde-Lawal emphasised the state’s commitment, noting that preventive care like UV umbrellas, hats, and efudix ointment has also been distributed.

“We intend to continue to fund the purse at LASUTH so that the dermatology unit can, at minimum, administer the first point of care for people,” she said.

A Consultant Physician and Dermatologist at the Department of Medicine, Dermatology Unit in LASUTH, Folakemi Cole, confirmed that at least nine patients have received full treatment, with many others benefiting.

Ms Cole shared that the beneficiaries have been able to access free treatment for skin cancer, depending on the severity of the level of their skin cancer.

One beneficiary, Edema Taiwo, a private school teacher, could not afford surgery but received it free at LASUTH in June 2024. “The pain was unbearable, and I had no means to pay. I’m grateful to the government for saving my life,” he said.

However, individuals like Ms Ibigbami and the Gabriels, who live outside Lagos State and desperately need medical care, wish they had the opportunity to benefit from the state’s free treatment programme and a chance at survival.

Preventing Skin Cancer among PWAs

Excessive sun exposure is the leading cause of skin cancer in PWAs. According to dermatologist Ms Cole, prevention should begin at birth, with early dermatological care and guidance for parents of children with albinism.

She emphasised that prevention involves wearing sun-protective clothing, using umbrellas during the day, wearing sunglasses and sun hats, and applying sunscreen to exposed areas like the face, hands, and legs.

She also advised PWAs to undergo regular skin checks with dermatologists to detect early signs of skin cancer.

“Like with most cancers, early detection is always key. PWAs need to see their dermatologist early so that if they have any cancer or pre-malignant skin condition, it can be treated on time,” she said.
Similarly, Lagos State AAN Chairman, Tolani Ojuri, said the association, with support from the state government, is running media campaigns to educate the public, especially in urban-poor communities, on skin cancer prevention.

Mr Ojuri also added that “PWAs need to check their skin at least once every three months. If there is anything on their skin for up to one week, go to the clinic to check.”

To ensure the preventive measure reaches a wide audience, Mr Ojuri said the association is seeking support from telecom operators to send push messages to PWAs and their families on how to prevent the disease.

The LASODA General Manager, Mrs Oyetunde-Lawal emphasised that prevention is more effective than seeking treatment later, urging parents of children with albinism to prioritise their children’s health by minimising sun exposure.

She also highlighted the role of schools in preventing skin cancer, noting that exposure often starts in childhood, especially during outdoor activities.

She recommended that schools provide alternative uniforms that offer full coverage and avoid reprimanding parents who allow children with albinism to wear long-sleeve uniforms or cover their heads in class.

Seeking Help

Ms Ibigbami has been attempting to raise N2 million since April 2024, but after nine months, she has still not reached her goal. The friends and network who had supported her through the first two surgeries are now financially exhausted and unable to assist her again.

“It is emotionally draining that I have not been able to raise the money needed for this surgery. I hope I survive this,” she said.

Sharing her hope for survival, she said. “I have survived two major surgeries and nine nose reconstructions. I believe I can survive this. I hope the help I need doesn’t arrive too late.”

On behalf of her sister, Ms Gabriel had appealed to Nigerians for help so Roseline could access the care she desperately needed. “Losing two of my siblings to the same ailment and watching the third near death is unbearable. Doctors have told us she can survive, but without the funds, there’s nothing anyone can do,” she shared on 30 January. Tragically, her sister passed away the very next day.

Ms Bamishe, while expressing her displeasure about the lives that have been lost due to the inability to raise funds for surgery, told PREMIUM TIMES that “it’s very difficult for our members to get financial help because of the high cost of skin cancer care. We believe that the only way to get help is through the federal and state governments.”

She appealed for the reinstatement of free skin cancer treatment for PWAs at the National Hospital and in teaching hospitals across Nigeria’s six geopolitical zones.

She also appealed for the inclusion of skin cancer in the National Health Insurance coverage to enable access to quality care by PWAs with skin cancer.

“Cancer treatment is covered under the insurance scheme but not skin cancer. When our members with skin cancer who are covered under the insurance go to the hospitals to access care, they are told that skin cancer is not covered.”

As part of key government actions, Ms Obisanya called for increased awareness of preventive measures so that PWAs are better informed, do not expose themselves to the sun, and reduce their chances of being affected by skin cancer.

Beyond the government

The AAN, under the leadership of Ms Bamishe, has outlined strategic actions to tackle the growing skin cancer crisis among PWAs. Ms Bamishe said that AAN plans to heavily invest in awareness campaigns to reduce the number of skin cancer cases.

The association is working on partnerships with the National Orientation Agency (NOA) to spread critical messages on preventive measures.

She also urged the House Committee on Disability, the National Commission for Persons with Disabilities (NCPWD), and other relevant bodies to prioritise support for PWAs across the country.
In addition, Ms Bamishe advocated for the establishment of a cancer fund, ensuring that those in need of financial assistance for treatment can access the resources they require.

“We also want to establish a cancer fund so that anyone who needs money to access care can rely on the fund, and with that, we can reduce the needless death of our members who wait endlessly trying to mobilise or secure resources to get the surgery done, and in some cases, lose their lives,” the AAN President explained.

This reporting was completed with the support of the Centre for Journalism Innovation and Development (CJID).