Albinism in Africa
Oculocutaneous albinism (OCA) is much more common in certain parts of Africa than elsewhere in the world. However, there are limited statistics regarding the incidence and prevalence of albinism in Africa in the current literature. Approximately 1 in 1429 in Tanzania, 1 in 4182 in Zimbabwe, and 1 in 4000 in South Africa have OCA, which is strikingly disparate from the prevalence rates in the United States (1 in 37,000) and globally (1 in 20,000). Therefore, the albino population in Africa represents an incredibly vulnerable group of people.
Firstly, the majority of Africans have dark complexions; therefore, an albino’s fair skin stands in stark contrast to their darker counterparts. This dissimilarity is readily apparent to the local populace and lends itself to public scrutiny. Albinos are often segregated from their community due to erroneous myths surrounding the genesis and transmission of albinism. Many people believe OCA is contagious, and will therefore avoid physical contact with a person with albinism. Another common belief is that the family of an individual with albinism is being punished for having previously mocked an albino. The resulting stigma associated with albinism can lead to depressive symptoms and ostracism.
Secondly, the lack of melanin pigment in OCA incurs an increased predilection for skin cancer, particularly squamous cell carcinoma. Hence, individuals with albinism must take proper precaution against the sun’s ultraviolet radiation (UVR) in order to protect themselves from developing potentially lethal cutaneous neoplasms. A study conducted in Tanzania clearly demonstrated how susceptible persons with albinism are to the carcinogenic potential of UVR: 100% of children had skin damage in their first year of life, and 50% of individuals between the ages of 20 and 30 had advanced, symptomatic skin cancers.
Even more striking, the study authors identified an albino child as young as 9-years-old who had already developed skin cancer. Furthermore, less than 2% of children with albinism living in Tanzania have a life expectancy of up to 40 years of age, and most die between the ages of 20 and 30. At the time of the study, 23.53% of the general Tanzanian population was older than 35-years-old, as compared to less than 10% of the albino study population. However, promising research has demonstrated that persons with albinism can live substantially longer with proper sun protection.
Thirdly, multiple ocular impairments are associated with OCA, including hypopigmentation of the iris and retina, hypoplastic fovea, hyperopia, severe myopia, strabismus, photophobia, loss of stereoscopic perception, and nystagmus. These visual disturbances may limit the type of work a person with albinism can accomplish without appropriate ophthalmic care, which is oftentimes prohibitively expensive. Without visual aids or special assistance in school, such as priority seating close to the blackboard and the provision of textbooks with enlarged text, many albinos succumb to academic pressures and drop out of school. Deprived of a proper education, persons with albinism have limited employment opportunities; unfortunately many resign themselves to manual labor, such as agricultural fieldwork, which exposes their vulnerable skin to noxious UVR. UVR is more potent and therefore carcinogenic near the equator, thereby further increasing their risk of skin cancer.
Finally, although albinism is transmitted through an autosomal recessive gene, it is more prevalent in certain regions of Africa due to the common practice of consanguineous marriages. In some societies, these unions are encouraged in order to keep property within a family. Unfortunately, if two cousins marry, each with one recessive allele of the defective gene, every pregnancy has a 1 in 4 chance of producing an albino child. Considering the stigma and discrimination against persons with albinism in many parts of Africa, education is necessary in order to promote awareness regarding the etiology of albinism, and the specific health concerns of this particular patient population. Of note, a common misconception in Tanzania is that a person with albinism is not human (a term to describe an albino in Tanzania is “zerus,” meaning “invisible”). Therefore, Africans are less inclined to support and advocate for this ignored cadre of ostracized individuals, furthering the importance of public education and awareness.
Human Rights Violations Against Persons with Albinism
The practice of using albino body parts for witchcraft in order to cure diseases or confer magical powers to make one rich or lucky has been reported throughout sub-Saharan Africa, particularly in Tanzania and the Democratic Republic of the Congo. $75,000 USD can be charged for the procurement of albino arms, legs, ears, and genitals. Children are not immune from these atrocities, as a case of a 7-month-old albino child being brutally murdered with a machete has been reported. In addition, it has been reported that albinos may be raped under the premise that their white skin can cure HIV or other sexually transmitted diseases. These human rights violations against persons with albinism are not uncommon, and increased international recognition and awareness is necessary in order to effect change and deter the continuation of these egregious crimes.
A Comprehensive Strategy to Address Albinism
Considering the multiple myths regarding albinism existent in Africa and the lack of education on this topic, one proposed mechanism to prevent the various stigmas and human rights violations against persons with albinism is through education-awareness campaigns. These campaigns can also facilitate collaboration between the public and private sector in providing humanitarian assistance to vulnerable populations.
In her paper entitled “Human Rights through Accompaniment,” Dr. Joia Mukherjee advocated supporting the public sector in order to promote human rights in resource-poor settings: “Humanitarian relief must deal with the immediate needs of a suffering population, yet that can be done effectively by empowering and accompanying government to respond to the needs of its people and by engaging grassroots groups and individuals to participate actively in relief and reconstruction of their communities.”
Through global and local education campaigns, both governmental leaders and community members can learn how to best support their fellow countrymen with albinism. This strategy will not only increase solidarity within the community, but it can also leverage the influence of the government, which can impart immediate change regarding public policies and cultural norms. This education-awareness model can also be used for other vulnerable populations, as well.
Since 2007, Dr. Aisha Sethi from the University of Chicago’s Pritzker School of Medicine has been travelling to Malawi every year in order to raise awareness on the human rights violations against persons with albinism. As a dermatologist and humanitarian, she has made it her mission to denounce the stigma associated with albinism, promote public education campaigns, such as “Albinism Awareness Day,” and provide free skin cancer screenings and treatment to this vulnerable patient population (Figure 1). In addition, she also brings medical students and training physicians with her in order to inspire the next generation of medical professionals to continue her work.
Public Sector Response
Over 200 people were present at “Albinism Awareness Day” on September 16, 2010, including both persons with albinism and their dark-skinned relatives and friends, which was a drastic improvement from the initial few who first listened to Dr. Sethi’s message in 2007. Members of the Ministry of Disability and Rehabilitation, the Director of Kamuzu Central Hospital, Dr. Noor Alide, and Dr. Sethi spoke on behalf of the albino population. A clear message of solidarity was conveyed at this event, as many of the speakers were albinos themselves. Boniface Massah, a ministry official who also has albinism, was one of the main speakers at the event. He is one of six children, and two of his siblings also have albinism.
As part of the event’s skin cancer prevention campaign, he explained to those in attendance the proper method for applying sun block, a supply of which was graciously donated from the Netherlands. He also demonstrated the importance of using wide brimmed hats and wearing sunglasses. The entire event was videotaped and many journalists were present, thereby allowing the widespread dissemination of the vital and important messages delivered during “Albinism Awareness Day.” The hope was to reach and educate more than those in the audience, and to help change the cultural attitude towards albinism. In this way, hopefully the stigma associated with albinism will dissipate, and persons with albinism will be able to reclaim their rightful place as productive members of society.
Education-awareness campaigns are only as beneficial as the audience that receives them. In order to truly deter and prevent human rights violations against persons with albinism, societal views regarding albinism and the culture of witchcraft needs to change. The government has an immense role to play in both of these issues. As mentioned previously, Africans are not ignorant to the fact that individuals with albinism are being slaughtered for their body parts; therefore, the police should be able to identify potential and past perpetrators by simple questioning in neighborhoods with high prevalence rates. Swift conviction of these criminals will send a clear message that these horrific acts are unethical, and no longer justified by myth or wealth.
This process is already starting in Tanzania: in 2008, three murderers were sentenced to death by hanging for the killing of a 14-year-old albino boy named Matatizo Dunia. This case was the first of its kind, and has the potential to significantly alter the way Africans think about albinism. In that same year, 170 witch doctors were arrested under the leadership of President Jakaya Kikwete. President Kikwete also appointed Tanzania’s first Member of Parliament with albinism, Al-Shymaa Kway-Geer in 2008. Prompt and appropriately severe governmental response is necessary, as it will inspire otherwise uneducated or recalcitrant community members to promote and uphold the rights of their fellow citizens with albinism.
However, the law is limited in how much influence it has on its populace. Molly Melching, founder of Tostan and a human rights activist, is noted to have said, “Law is a quick-fix solution, and then people think you don’t have to do anything else…The real thing that will make a difference is education.” Education campaigns, such as “Albinism Awareness Day” in Malawi or the “Albinism in Southern Africa” project should be conducted throughout Africa and internationally in order to promote the rights of those with albinism. Subsequently, a holistic approach to terminating these atrocities against individuals with albinism will be achieved, and can serve as a precedent to address similar crimes committed against other vulnerable populations.
Dr. Joan Paul is currently finishing a clinical research fellowship at Virginia Clinical Research, Inc. where she has participated in over 20 clinical trials for various dermatologic conditions, such as psoriasis, lupus, atopic dermatitis, and acne vulgaris. Paul has volunteered in Haiti, Uganda, Mexico, and Trinidad & Tobago. She obtained a Masters in Public Health in Global Health from the Harvard School of Public Health.