March 2, 2017
MOUNT DARWIN, ZIMBABWE — Luckson Chapfunya, 19, used to wrap a towel over his head with a hat on top to protect the wound on his face from the scorching sun.
Like many with albinism, a congenital disorder characterized by the absence of pigment in the skin, hair and eyes, he suffered from skin cancer. Because his family was not able to afford treatment, the cancerous growth that started in July 2015 turned into a septic wound that covered almost half of his face and spread into his ear. It eventually killed him. Chapfunya died Jan. 29.
Although the family had a letter from the government stating that Chapfunya could not afford treatment, his grandmother Eneres Chapfunya says, they were turned away by Parirenyatwa Hospital in the capital city of Harare, where they sought treatment.
“We were told that social welfare letters were no longer being accepted,” she says. “We were told that they needed $950 to operate the mass on his cheek.”
Dr. Gerald Gwinji, permanent secretary in Zimbabwe’s Ministry of Health and Child Care, says that Luckson Chapfunya’s case is unfortunate, and that the government seeks to prevent such situations through the country’s Social Welfare Assistance Act.
“When someone brings a social welfare letter, it shows that they are indigent and therefore they should be assisted,” he says.
Without money and with the hospital’s refusal, Eneres Chapfunya, a peasant farmer whose income has diminished because of successive droughts, says she had no option but to use traditional herbs, which proved ineffective.
John Chipendo, who is in charge of a local clinic in Luckson Chapfunya’s village, about 250 kilometers (155 miles) away from the capital, says the clinic could only topically treat Chapfunya and provided him with gloves and Betadine to dress the wound. The clinic just didn’t have the expertise to treat skin cancer, Chipendo says.
Parirenyatwa Hospital declined to respond after several calls and three emails seeking comment about Chapfunya and about treatment of those with albinism-related skin cancer that have social welfare letters that show they cannot pay for treatment. Gwinji, of the Ministry of Health and Child Care, asked that patients alert the ministry about any challenges they face in accessing health care.
“We have had cases that were brought to our offices from various institutions, and we have quickly moved in to correct the situation,” Gwinji says.
“People should not just end at the reception desk; if they are denied service, there is always a chief executive officer at health institutions, and we encourage them to approach these offices, because the flexibility of clerks at the reception is limited,” he says. “If you are not satisfied with one level, you should go to the next level to get assistance.”
Albinism, believed to affect one in 20,000 people worldwide, is more prevalent in sub-Saharan Africa. In Zimbabwe, as many as one in 1,000 are affected, according to the Journal of Medical Genetics.
A review of 64 cases by the journal BMC Dermatology posits that the incidence of squamous cell carcinoma in the general African population ranges from 7.8 to 16 percent of all diagnosed skin malignancies. The risk goes up a thousandfold for Africans with albinism.
The Alive Albinism Initiative, a local nongovernmental organization in Harare, estimates that at least two people with albinism die of skin cancer every month in the country.
Blessing Mupondiwa, 18, also had albinism and also died recently from skin cancer. He lived in Dzivarasekwa, a suburb of Harare, and was able to receive treatment when a local benefactor provided the funds.
Photo by Gamuchirai Masiyiwa, GPJ Zimbabwe
Mupondiwa’s grandmother Idah Dzotizei says he underwent three operations at three local hospitals on his nose and lip area and also underwent chemotherapy at Parirenyatwa Hospital through the assistance of Forgiveness Makore, a reverend with the Christian Marching Church.
Moses Nyamasoka, who has a lump on his lip that medical doctors said might be cancerous and should be removed, says he also was turned away from the hospital, in September 2016, due to lack of funds.
“It’s really painful, especially when eating, but I have to endure the pain because I do not have money to get treatment,” he says. Nyamasoka says the hospital told him he would need to pay about $400 to have the lump removed.
Gwenlisa Mushonga, director of the Alive Albinism Initiative, says many living with albinism either are unaware of the precautionary measures they should take to protect themselves from the sun or cannot afford them.
“Sunscreen lotions, which we must use to protect our skin, are expensive and beyond the reach of most people living with albinism, especially those in the rural areas,” Mushonga says.
Dr. Gift Salimo, a general practitioner who offers free screenings for people with albinism, says more than 50 percent of people with albinism are prone to skin cancer. Yet only a few organizations provide creams and health care for them.
“We treat those we can treat at [a] primary level, and if we see any suspicious mass, abnormal pigmentation, we refer them to a specialist for further evaluation,” he says.
Salimo says the government does not have sound financial capabilities, and individual hospitals must charge user fees to survive.
“It’s just an economy which is not functioning well, and if things improve, we will see everyone else, including the disadvantaged, getting better health care,” he says.
Gwinji acknowledges that skin cancer for those with albinism is a challenge for the health system. “We have not done very well in that area in general. You hardly find sunscreens in our pharmacies,” Gwinji says.
He says new health funding will include strategies to aid those with albinism. “What we can do for this special group is to make sunscreens and medical products available to them,” Gwinji says.
Photo by Gamuchirai Masiyiwa, GPJ Zimbabwe
Gamuchirai Masiyiwa, GPJ reporter, translated some interviews from Shona to English.