Without the necessary awareness about albinism and how to manage it effectively, the rate of skin cancer, alongside other skin complications, among people with the condition in Nigeria will continue to rise. According to the United Nations independent expert on the enjoyment of rights for persons with albinism, Ms. Muluka-Anne Miti-Drummond, up to five deaths caused by skin cancer are being recorded every half year for people with albinism in Nigeria, particularly due to rising ultraviolet (UV) rays.

Dr Folakemi Cole-Adeife, a dermatology consultant at Lagos State University Teaching Hospital (LASUTH), corroborates the link between skin cancer and sun exposure. She revealed that many Nigerians with albinism do not take early protective measures, which are necessary as low levels of melanin greatly reduce skin protection from harmful UV radiation. She explained that this is responsible for collagen damage, which can lead to skin thickening, dry skin which becomes wrinkled, freckles or brown spots. With all of these, the skin may develop actinic keratosis which is precancerous and may progress to skin cancer if left untreated. She explained:

A large percentage of patients who I see with skin cancers are not aware or have just recently become aware of the dangers of excessive sun exposure to people with albinism. They have lived most of their lives without any significant efforts at protecting themselves. There is a low level of awareness in people with albinism and the general public on the importance of sun protection.

Adams and Ayo come from backgrounds where their parents were well-informed about the heightened dangers of sun on their skin. They passed this knowledge on to them. Yet, like many other people with albinism, they often are not aware of the severity of skin cancer. Adams witnessed it for the first time during her visit to LASUTH to check out a blister on her forehead. She shared:

A major eye-opener for me was when I visited LASUTH for a blister on my forehead that wouldn’t heal. That day, I saw persons with albinism facing severe skin cancer challenges. It was shocking. I had always known about the risks of sun exposure, but I didn’t know it could get that severe. I saw very large wound openings.

According to Dr Cole-Adeife, people like Adams rarely present with skin cancers because they know when to visit the clinic for skin evaluation. The patients who often have advanced skin cancers are people who do not know about sun protection and safety. This lack of timely presentation and late detection due to wrong diagnosis aggravates the damage of skin cancer in many people until it’s too late and dims the hope of recovery. ‘People with albinism do die from skin cancer—not because it’s untreatable, but because of late presentation. Mortality rates range from 12 to 15 per cent, mainly because many present when it’s almost too late for effective medical intervention,’ she told me. Another key factor contributing to high mortality rates is the financial inability to pursue treatment, which is astronomically expensive. Dr Cole-Adeife explained:

The type of skin cancer common among people with albinism often requires multiple sessions of radiotherapy, which costs about ₦1.8 million per session. Surgical treatment is effective in the early stages when the cancer hasn’t spread, but once advanced treatment like chemotherapy or radiotherapy is required, survival rates drop due to cost. Most people with albinism cannot afford these treatments, so we lose a lot of them to advanced skin cancer because of that.

Adams’ blister healed without intensive treatment. However, her experience at LASUTH led her to inquire about the ease of accessing treatment from Albinism Association of Nigeria (AAN), a group, which she’s a member, working to protect people with albinism from discrimination and also empower them. They’ve also been partnering with the Lagos State Office for Disability Affairs (LASODA) to distribute protective gear like hats and sunscreen, helping people with albinism protect their skin and reduce exposure to harmful UV rays. From the AAN association, Adams learnt of how LASODA has been responsive to skin cancer care for persons with albinism. So, if people with albinism develop skin cancer, there’s a subsidized arrangement for treatment. Dr Cole-Adeife attested to this, stating:

The Lagos State Government has been providing free cancer treatment for people with albinism. They get free surgeries, free drugs, and a cream for early-stage skin cancer called 5-fluorouracil, which the government supplies at no cost, along with free cryotherapy and surgical treatment by plastic surgeons. Chemotherapy has also been provided to some, and even the expensive radiotherapy has been paid for in a few cases. But even with this support, patients with advanced cases still don’t always survive.

Speaking of preventive measures, Adams explained that albinism dictates her choice of clothing and outings. In addition, her skincare routine is never short of sunscreen. Ayo, who also follows similar practices, pointed out the cost barrier that prevents people with albinism from using sunscreens. She said: ‘They’re expensive and that’s why many cannot afford them, and so they are not able to properly prevent themselves from some of these harsh conditions.’

For this reason, Dr Cole-Adeife said dermatologists are advocating that sunscreens be covered under health insurance schemes as an essential drug. In the meantime, she explained that early detection is key. ‘Skin cancer often begins as a tiny rash—it may look like a pimple on the face, neck, or ear, or appear as a small sore that doesn’t heal quickly, she said, ‘I always tell them {patients with albinism}: once you have any little lump, pimple-like lesion, or sore that’s been there for more than two weeks, please come to the hospital.’