37/57 Report of the Independent Expert on the enjoyment of human rights by persons with albinism
Document Type: Final Report
Date: 2018 Dec
Session: 37th Regular Session (2018 Feb)
Agenda Item: Item3: Promotion and protection of all human rights, civil, political, economic, social and cultural rights, including the right to development
GE.17-22923(E)
Human Rights Council Thirty-seventh session
26 February–23 March 2018
Agenda item 3
Promotion and protection of all human rights, civil,
political, economic, social and cultural rights,
including the right to development
Report of the Independent Expert on the enjoyment of human rights by persons with albinism
Note by the Secretariat
The Secretariat has the honour to transmit to the Human Rights Council the report of
the Independent Expert on the enjoyment of human rights by persons with albinism
pursuant to Council resolution 28/6. In her report, the Independent Expert explores matters
concerning the enjoyment of the right to the highest attainable standard of health by persons
with albinism. On the basis of information gathered from surveys, reports and country
visits, she conceptualizes the multifaceted challenges in the field of health, including
disabilities arising from visual impairment and the high number of fatalities caused by skin
cancer in certain regions, the applicable norms and standards in international human rights
law, the continuing challenges and best practices. In so doing, she discusses contextual
factors, as well as exogenous elements, including health determinants. She highlights the
important work being carried out by civil society and makes several recommendations
centred on the call for more government ownership and initiative in this area.
United Nations A/HRC/37/57
Report of the Independent Expert on the enjoyment of human rights by persons with albinism
Contents
Page
I. Introduction ................................................................................................................................... 3
II. Activities of the Independent Expert ............................................................................................. 3
A. Regional Action Plan on Albinism in Africa (2017–2021) .................................................. 3
B. Witchcraft-related harmful practices .................................................................................... 4
C. Other activities ...................................................................................................................... 4
III. The right to health of persons with albinism ................................................................................. 4
A. Introduction .......................................................................................................................... 4
B. Condition of albinism ........................................................................................................... 5
C. Exogenous health determinants ............................................................................................ 5
D. International normative framework ...................................................................................... 6
IV. Issues and challenges .................................................................................................................... 8
A. Impact of health issues on the right to life ............................................................................ 8
B. Impact of health issues on socioeconomic rights .................................................................. 10
C. Psychosocial impact and mental health ................................................................................ 11
D. Health of displaced persons .................................................................................................. 13
E. Health and sustainable development ..................................................................................... 14
F. Health financing.................................................................................................................... 14
V. Best practices ................................................................................................................................ 15
A. Country strategies ................................................................................................................. 15
B. Other responses ..................................................................................................................... 17
VI. Conclusion and recommendations ................................................................................................. 19
I. Introduction
1. The present report is submitted pursuant to resolution 28/6 of the Human Rights
Council, in which the Council established the mandate of the Independent Expert on the
enjoyment of human rights by persons with albinism.
2. In section II of the report, the Independent Expert provides an overview of the
activities undertaken since March 2017, in particular regarding attacks, related human
rights violations and discrimination against persons with albinism. In section III, she
focuses on the right of persons with albinism to the highest attainable standard of health,
particularly with regard to visual impairment and their high susceptibility to skin cancer and
related ailments.
II. Activities of the Independent Expert
3. In 2017, the Independent Expert conducted country visits to the United Republic of
Tanzania (A/HRC/37/57/Add.1) from 18 to 28 July 2017 and to Fiji from 27 November to
7 December 2017. The report of the mission to Fiji will be presented to the Human Rights
Council in March 2019.
4. The report on the Independent Expert’s visit to the United Republic of Tanzania
contains details of the measures taken by both the Government and civil society to
significantly decrease the number of reported attacks against persons with albinism.
However, the Independent Expert stresses that progress remains extremely fragile, as the
root causes of the attacks are still widespread in the country. During her visit to Fiji, the
Independent Expert focused on the measures taken to address and mainstream the right of
persons with albinism to the highest standards of health, to combat discrimination and to
ensure their full access to education.
A. Regional Action Plan on Albinism in Africa (2017–2021)
5. The Regional Action Plan on Albinism in Africa (2017–2021) to address attacks and
related human rights violations against persons with albinism has now been finalized (see
A/HRC/37/57/Add.3). The Plan was developed by the Independent Expert through
consultations with representatives from the United Nations, the African Union,
Governments, organizations of persons with albinism and other civil society organizations.
It is based on various recommendations by international bodies and mechanisms, and sets
out 15 specific, concrete and time-bound measures in key areas, such as public education
and awareness-raising, systematic data collection, research on the root causes of violence,
the use of legal and policy frameworks to deter harmful practices related to witchcraft and
trafficking in body parts, and measures to fight impunity and to ensure support for victims.
6. The Regional Action Plan was endorsed by the African Commission on Human and
Peoples’ Rights during its 60th ordinary session in May 2017.1 In addition to endorsing the
Plan, the Commission urged all States parties to the African Charter on Human and
Peoples’ Rights to take all the measures necessary for its adoption and implementation and
invited the relevant organs and bodies of the African Union to give due regard to adapting
and implementing the Plan.
7. In that context, the Independent Expert convened2 a regional meeting in Pretoria in
November 2017 with representatives from international organizations and civil society,
including organizations of persons with albinism, to design an implementation strategy for
the Plan. That strategy is currently being finalized and will be launched in 2018.
1 Resolution 373 (LX) 2017.
2 With the University of Pretoria and the Open Society Foundations.
B. Witchcraft-related harmful practices
8. In previous reports (A/HRC/34/59 and A/71/255), the Independent Expert showed
how interrelated factors, including witchcraft-related harmful practices, contributed to
ongoing outbreaks of attacks and discrimination against persons with albinism.
9. To further the debate, the Independent Expert organized, in Geneva in September
2017, the first-ever systematic and in-depth workshop3 on witchcraft and human rights. The
two-day workshop brought together United Nations experts, academics and members of
civil society to discuss the violence associated with such beliefs and practices and their
impact, particularly on groups in vulnerable situations, including persons with albinism.
10. Workshop participants addressed the various manifestations of witchcraft, its scope,
the difficulties associated with its definition and its links to harmful practices, as well as
ritual attacks and killings. In addition, victims of witchcraft-related harmful practices
shared their experiences. The workshop was concluded with an identification of best
practices, recommendations and suggestions for the way forward (A/HRC/37/57/Add.2).
C. Other activities
11. In addition, the Independent Expert participated in numerous public engagements,
including interventions in a multiplicity of local and international media events,
conferences, campaigns, consultations and expert meetings, which allowed her to increase
awareness among a diverse and extensive audience, provide input, share information and
promote good practices with regard to the enjoyment of human rights by persons with
albinism.
III. The right to health of persons with albinism
A. Introduction
12. Persons with albinism are entitled to the highest attainable standard of health
without discrimination of any kind. Under international human rights law, the content and
scope of the right to health are defined by international standards and jurisprudence.
Considering the evolutionary nature of those standards, the right to health of persons with
albinism requires contextualization and the factoring-in of exogenous issues. That is
particularly important because persons with albinism are victims of multiple and
intersecting discrimination, which hinders the enjoyment of their right to the highest
attainable standard of health.
13. The present report is based on research conducted and information collected by the
Independent Expert through country visits, academic research, questionnaires sent to
member States, organizations serving persons with albinism and other non-governmental
organizations.4
3 With the University of Lancaster, the Witchcraft and Human Rights Information Network, the Special
Representative of the Secretary-General on Violence against Children, the Special Rapporteur on
violence against women, its causes and consequences, and the Special Rapporteur on extrajudicial,
summary or arbitrary executions.
4 Member States include Cuba, Honduras, Kuwait and Slovenia. Contributions were submitted by the
following organizations of persons with albinism: the Albino Network Association of Nigeria;
Association Ivoirienne pour la Promotion des Femmes Albinos; Association pour la Promotion des
Albinos au Cameroun; Connexion Worldwide, Benin; Mwanza Albino Society, United Republic of
Tanzania; Organization of Persons with Albinism in Rwanda; Portail des Droits des Personnes
Handicapées en Afrique de l’Ouest, Mali; Rwanda Albinism Society; the Source of the Nile Union of
Persons with Albinism, Uganda; and Stukie Motsa Foundation, Swaziland. Information was received
from the non-governmental organization Kilimanjaro Sunscreen (KiliSun) and the Kilimanjaro
Sunscreen Production Unit, United Republic of Tanzania.
B. Condition of albinism
14. Throughout the world, people are born with albinism, which is a relatively rare, non-
contagious, genetically inherited condition that affects people regardless of ethnicity or
gender. In order for a person to be affected by albinism, both parents must carry the gene.
In such cases, there is a 25 per cent chance at each pregnancy that a child will be born with
albinism. The condition is characterized by a significant deficit in the production of
melanin, which results in the partial or complete absence of pigment in any part or all of the
skin, hair and eyes.
15. There are different types of albinism. The most common and visible type is
oculocutaneous albinism, which affects all of the skin, hair and eyes. Within this type, there
are various subtypes, which may reflect varying degrees of melanin pigment deficiency.5
The main subtypes of oculocutaneous albinism are tyrosinase negative albinism and
tyrosinase positive albinism. In tyrosinase negative albinism, there is little or no production
of melanin; it is often characterized by white hair and opaque or transparent irises. In
tyrosinase positive albinism, which is the more prevalent subtype, particularly in African
countries, some melanin is produced; it is characterized by yellow-blonde or sandy-
coloured hair and grey to light brown irises. Less common forms of albinism include ocular
albinism, which affects the eyes alone, and Hermansky-Pudlak syndrome, which is
albinism with bleeding and bowel (colitis) disorders, and lung diseases.
16. In addition to significantly affecting appearance, albinism often results in two
congenital permanent health conditions: visual impairments to varying degrees and high
susceptibility to ultraviolet-induced skin damage, in particular skin cancer.
C. Exogenous health determinants
17. The enjoyment of the right to health by persons with albinism, in particular
regarding visual impairment and the susceptibility of the skin to solar damage and cancer,
requires consideration of exogenous determinants of health. Visual impairment relates to a
condition of the body and leads to disability insofar as the manner in which “environment
and society respond to that impairment”.6 As recognized in preamble to the Convention on
the Rights of Persons with Disabilities, disability results from the interaction between
persons with impairments and attitudinal and environmental barriers that hinder their full
and effective participation in society on an equal basis with others. Similarly, the
Committee on Economic, Social and Cultural Rights specifies that the right to health
embraces a wide range of socioeconomic factors that promote conditions under which
people can lead a healthy life. Those extend to the underlying determinants of health, such
as food and nutrition, housing, access to safe and potable water and adequate sanitation,
safe and healthy working conditions, and a healthy environment.7 For instance, in the Bhatti
Tribe of Pakistan, in which about 5 per cent of its members are persons with albinism, a
study found that “most of them are economically poor and cannot afford to buy sun
protection medicines and clothing required for this condition”.8 Likewise, in Nigeria, the
barriers to eye care faced by persons with albinism include poor awareness, non-availability
5 See, for example, Geraldine R. McBride, “Oculocutaneous albinism: an African perspective”, British
and Irish Orthoptic Journal, vol. 11 (2014), pp. 3–8, at p. 3: “Melanin is a photo-protective protein
whose role in the skin is to absorb ultraviolet (UV) light and prevent damage; without melanin the
skin is more prone to sunburn and skin cancer. Lack of melanin results in a triad of signs — pale skin,
light hair and pale iris colour — but the consequence of [oculocutaneous albinism] is impaired visual
acuity (VA)”.
6 Theresia Degener, “Disability in a human rights context”, Laws, vol. 5, No. 3 (2016).
7 See general comment No. 14 (2000) on the right to the highest attainable standard of health, para. 4.
8 Azam Jah Samdani and Bahram Khan Khoso, “A unique albino village of Bhatti tribe in rural Sindh,
Pakistan, with oculocutaneous albinism manifestations: an epidemiological study”, Iranian Journal of
Dermatology (2009).
of such care, financial constraints and limited accessibility, notably regarding transportation
due to the uneven spatial distribution of services.9
18. In addition to the socioeconomic and environmental factors, a range of other
exogenous determinants greatly, and often negatively, affect the enjoyment of the right to
health by persons with albinism. Those factors include myths, discrimination and
stigmatization, which are often conveyed and reinforced through popular culture, such as
folklore, media and film, and exacerbated by a widespread lack of awareness about
albinism, including among health professionals. Any consideration of such exogenous
determinants requires “a reorientation in dealing with albinism — away from just medical
intervention to treating it as a social construct requiring a holistic approach”.10
19. In sub-Saharan Africa, it has been widely documented that myths and misbeliefs
surrounding persons with albinism have led to witchcraft-related harmful practices,
involving the use of their body parts obtained through brutal attacks and mutilations.11 In
that region, the psychological impact of stigmatization and fear of being attacked greatly
affect the health of persons with albinism. For instance, in the United Republic of Tanzania,
persons with albinism — victims or not — often exhibit a high level of anxiety, including
hypervigilance scanning, which is often a response to a ubiquitous fear in all environments.
20. Moreover, it is reported that persons with albinism — particularly when there is a
strong visible contrast between their appearance and that of the general population — are
rejected, shunned and excluded from their community, owing to the myths surrounding the
condition and related stigmatization.
21. Climate is also a significant risk factor. Regions of high sun exposure represent a
particular threat to persons with albinism, such as in the Sahel, equatorial countries, the
South Pacific and South America.
D. International normative framework
22. Article 12 of the International Covenant on Economic, Social and Cultural Rights
provides the most comprehensive normative framework on the right to the highest
attainable standard of health. It is buttressed by specific provisions in other international12
and regional13 human rights instruments.
The right to health
23. Pursuant to that article, States parties should take all appropriate measures to ensure
access for persons with albinism to gender-sensitive health services, including health-
related rehabilitation. In particular, States parties shall provide tailored health services for
the condition of albinism, and ensure that such health services are made available as close
9 N.N. Udeh and others, “Oculocutaneous albinism: identifying and overcoming barriers to vision care
in a Nigerian population”, Journal of Community Health, vol. 39, No. 3 (2014), pp. 508–513.
10 R.J. Gaigher, P.M. Lund and E. Makuya, “A sociological study of children with albinism at a special
school in the Limpopo province”, Curationis (2002).
11 A/HRC/34/59.
12 The right to health is also recognized in the following international legal instruments: International
Convention on the Elimination of All Forms of Racial Discrimination, art. 5 (e) (iv); Convention on
the Elimination of All Forms of Discrimination against Women, arts. 11 (1) (f), 12 and 14 (2) (b);
Convention on the Rights of the Child, art. 24; International Convention on the Protection of the
Rights of All Migrant Workers and Members of Their Families, arts. 28, 43 (e) and 45 (c); and
Convention on the Rights of Persons with Disabilities, art. 25.
13 The right to health is also recognized in several regional instruments, such as the African Charter on
Human and Peoples’ Rights, the Additional Protocol to the American Convention on Human Rights
in the Area of Economic, Social and Cultural Rights, known as the Protocol of San Salvador (1988)
and the European Social Charter (1961, revised in 1996). The American Convention on Human
Rights (1969) and the Convention for the Protection of Human Rights and Fundamental Freedoms
(1950) contain provisions related to health, such as the right to life, the prohibition on torture and
other cruel, inhuman or degrading treatment or punishment, and the right to family and private life.
as possible to local communities where persons with albinism live. Furthermore, States
parties shall require health professionals to provide care of the same quality to persons with
albinism as is available to others; prohibit discrimination against persons with albinism in
the provision of health services; and prevent discriminatory denial of health care or health
services on the basis of disability or colour.
24. The right to health also includes four interrelated elements: availability,
accessibility, acceptability and quality. In addition, it entails ensuring access to an adequate
system of health protection without discrimination, the right to prevention and treatment of
illnesses, the right to access essential medicines, the provision of health-related education
and information, and the participation of those concerned in health-related decision-
making.14
The rights of persons with disabilities
25. Persons with albinism are entitled to the same rights and standards enjoyed by
persons with disabilities, owing to the lack of sufficient melanin in their eyes and skin,
which results in sensitivity to bright light, visual impairment, susceptibility to skin cancer
and various associated barriers in society. It is essential to reassert that human rights are
inalienable, regardless of health or disability status. In accordance with the Convention on
the Rights of Persons with Disabilities, States have a duty to provide reasonable
accommodation in order to ensure de facto equality of persons with disabilities. 15 The
Convention also recognizes the right to the enjoyment of the highest attainable standard of
health, without discrimination on the basis of disability.16
Equality and non-discrimination
26. Persons with albinism also face discrimination on the basis of colour, which leads to
significant barriers to the enjoyment of the right to health. In that regard, the Committee on
the Elimination of Racial Discrimination recognizes that persons with albinism suffer from
racial discrimination, as it is discrimination based on colour, one of the prohibited grounds
of racial discrimination listed in article 1 of the International Convention on the Elimination
of All Forms of Racial Discrimination.17
27. Discrimination against persons with albinism on the basis of colour manifests itself
in a variety of forms. They include harmful practices,18 and physical attacks and mutilation
motivated by witchcraft-related beliefs and practices, which often lead to death, as reported
in 28 countries in sub-Saharan Africa. In that region, pre-existing conditions include a
widespread belief in witchcraft and, in particular, ambiguity between the practice of
witchdoctors and practice of traditional medicine.19
28. In that regard, the International Convention on the Elimination of All Forms of
Racial Discrimination lays down the obligations of States parties to prohibit and eliminate
racial discrimination in all its forms and to guarantee the right of everyone, without
distinction as to race, colour, or national or ethnic origin, to public health, medical care,
social security and social services.20 Therefore, under the Convention, persons affected by
racial discrimination, including persons with albinism, are entitled to benefit from special
measures by States parties until de facto equality is guaranteed.21
14 Committee on Economic, Social and Cultural Rights, general comment No. 14.
15 Arts. 2 and 5.
16 Art. 25.
17 See CERD/C/ZAF/CO/4-8, paras. 20–21.
18 Joint general recommendation No. 31 of the Committee on the Elimination of Discrimination against
Women/general comment No. 18 of the Committee on the Rights of the Child (2014) on harmful
practices.
19 See A/HRC/34/59, para. 56.
20 Art. 5.
21 General recommendation No. 32 (2009) on the meaning and scope of special measures in the
Convention.
Intersecting and multiple discrimination
29. Persons with albinism are discriminated against on the basis of intersecting grounds,
largely based on disability and colour. According to reports and direct observation,
discrimination based on colour exacerbates the consequences of disability, in particular
when there is high degree of contrast between the colouring of persons with albinism and
that of the dominant population. According to Patricia Lund, in sub-Saharan Africa for
example, “this appearance, so strikingly different from normally pigmented family
members and the rest of the black community, results in problems of acceptance and social
integration for those affected.”22
30. In other words, discrimination against persons with albinism should be understood
as a specific situation stemming from the intersection of both disability and colour. Also,
multiple discrimination affects subgroups and individuals among people with albinism. For
instance, persons with albinism who are women and those affected by HIV/AIDS face
aggravated discrimination.23
31. Therefore, an understanding of the challenges and identification of promising
practices to ensure the right of persons with albinism to the highest attainable standard of
physical and mental health require a holistic approach. Such an approach should also
address the contextual and exogenous determinants that underpin specific situations at the
intersection of both disability and colour, which manifest themselves with different degrees
of severity according to the specific context.
IV. Issues and challenges
32. The most pressing health issue faced by persons with albinism is skin cancer. That
fact has been firmly established on the basis of several studies and consultations with civil
society organizations, particularly those working with persons with albinism. In addition to
skin cancer, other urgent health issues include visual impairment and mental health.
33. Persons with albinism are also subject to other health problems not linked to the
condition of albinism. Those include common conditions and illnesses to which they have
become more vulnerable, owing to poverty and pre-existing discrimination and neglect of
albinism in the health and social services system, in general. Organizations of persons with
albinism reported specific health problems, such as malnutrition and dehydration, tropical
diseases, such as malaria and typhoid fever, infectious diseases, HIV/AIDS, cholera and
chronic non-communicable diseases.
34. At present, the enjoyment of the right to the highest standard of mental and physical
health by persons with albinism is far from a reality. As a consequence, health issues and
intersecting discrimination in the context of exogenous factors have an impact on the
enjoyment of other human rights, such as the right to life and socioeconomic rights.
A. Impact of health issues on the right to life
35. The most serious health issue affecting the enjoyment of the right to life by persons
with albinism is their susceptibility to skin cancer. In addition, the discrimination and
stigmatization arising from skin colour leads to immediate life-threatening crimes in
contexts in which witchcraft-related misbeliefs and harmful practices are widespread.
High susceptibility to skin cancer
36. It has been indicated in several reports that most persons with albinism in sub-
Saharan Africa die from skin cancer between the ages of 30 and 40 years.24 In the case of
22 P.M. Lund, “Oculocutaneous albinism in southern Africa: population structure, health and genetic
care”, Annals of Human Biology, vol. 32, No. 2 (2005), pp. 168–173, at pp. 168–169.
23 Submission of the Association Ivoirienne pour la Promotion des Femmes Albinos.
24 Submissions of Connexion Worldwide and the Source of the Nile Union of Persons with Albinism.
the United Republic of Tanzania, which has been a prime beneficiary of multiple
interventions on the issue, and consequently accounts for a significant amount of data on
the matter, it has been reported that half the population of persons with albinism “will
develop advanced skin cancer between 20 and 30 years of age, with less than 2 per cent of
albino children in Tanzania living to be 40 years of age”.25 It was also indicated in an
earlier study that “chronic skin damage was found in all those with albinism by 12 months
of age”.26 In those circumstances, the prospects of having limited or no access to preventive
measures and treatments for skin cancer would inevitably lead to premature although
preventable death — all of this despite the fact that the susceptibility of the skin of a person
with albinism to cancer and other solar damage has been known for at least half century.27
The risk is exacerbated in sunny climates closer to the equator, but it is still a permanent
and universal risk for persons with albinism throughout the world. In Cuba, where persons
with albinism enjoy free access to the health system, a small number of cases of skin cancer
are reported.28
37. In poor countries, “sunscreens are prohibitively expensive, leading to a focus on sun
avoidance and protection from an early age”.29 At schools in sunny climates, sun exposure
may also differ between boys and girls as they tend to have different leisure activities and
wear different clothes. The Association Ivoirienne pour la Promotion des Femmes Albinos
reports that women may be more vulnerable to sun exposure due to the type of clothes they
wear and their daily activities, including childcare. In their study of children with albinism
in a specialized school in South Africa, Patricia Lund and Julie Taylor observed that boys
play football outdoors, while girls prefer activities in shaded areas. In that regard, data
collected by the only cancer institute in the United Republic of Tanzania shows that men
and boys are significantly overrepresented at their clinic. Thus, a gender perspective is
required in devising responses to the susceptibility of persons with albinism to skin cancer.
However, it is essential to remember that sunburn and similar damage could still occur in
the shade. That is why adequate protective clothes are key in sun avoidance and protection.
38. Outdoor working conditions aggravate the risks and the prevalence of skin cancer
among persons with albinism, particularly in rural areas. 30 Limited employment
opportunities and vocational training condemn most to outdoor income-generating activities
under extended sun exposure. Furthermore, a lack of health facilities and health
programmes, including screening and treatment, directly contribute to the high mortality
rate of persons with albinism owing to skin cancer.
39. For those who already have skin cancer, treatment is often not available. In Benin,
for instance, Connexion Worldwide reports that they are not aware of any specialized
centre for screening and treatment of skin cancer. In Uganda, the Source of the Nile Union
of Persons with Albinism reports that the only radiotherapy machine in the country has
been broken for a long period. Furthermore, the risk of skin cancer is higher when persons
with albinism seek help too late after the appearance of the first symptoms, or fail to follow
preventive measures or complete their treatment regimen.31 Factors accounting for those
issues include the lack of priority accorded to prevention measures given the need for
immediate survival, self-isolation to avoid further stigmatization, fear of attack, lack of
information and lack of financial means to cover the cost of transport to health centres and
other costs.
25 Geraldine R. McBride, “Oculocutaneous albinism: an African perspective”, p. 11.
26 Patricia M. Lund and Julie S. Taylor, “Lack of adequate sun protection for children with
oculocutaneous albinism in South Africa”, BMC Public Health, vol. 8 (2008).
27 A.N. Okoro, “Albinism in Nigeria. A clinical and social study”, British Journal of Dermatology, vol.
93, No. 5 (1975), pp. 485–492.
28 Submission of Cuba.
29 P.M. Lund, “Oculocutaneous albinism in southern Africa”.
30 Submission of Connexion Worldwide.
31 Geraldine R. McBride, “Oculocutaneous albinism: an African perspective”.
Attacks, rape, mutilation, infanticide and trafficking of body parts
40. Discrimination and stigmatization against persons with albinism, owing to myths
and misbeliefs, lead to several human rights violations. Foremost is the violation of the
right to life, which often takes the form of attacks, mutilations, trafficking of body parts and
infanticide. For instance, in Benin, there are reports that infanticide has been carried out
based on the misbelief that children with albinism cause misfortune. 32 Similarly, in
Zimbabwe, it is reported that, “traditionally, children with albinism were associated with
witchcraft and bad omens and were killed at birth”.33 Instances of infanticide have also been
reported in Swaziland.34 Furthermore, there is also the prevalent “death myth”, which holds
that persons with albinism do not die but simply disappear.
41. In some regions, it has been reported that persons with albinism are the subject of
positive misbeliefs, such as being considered gods or quasi-deities, as in southern Benin35
or in the Kuna Lands in Panama.36 In those cases, the misbeliefs do not generate a direct
threat. However, their apparently benign origin is not to be automatically looked upon as
favourable since they are still misbeliefs, ignorant of the condition of albinism. Such
misbeliefs are also dangerous because they associate the value, dignity and, ultimately, the
human rights of persons with albinism with a subjective interpretation, which could change
over time.
42. The life expectancy of persons with albinism, particularly children and women with
albinism, is also put at risk by harmful practices based on misbelief and witchcraft. A
number of countries in sub-Saharan Africa continue to be affected by the ritual defilement
and rape of girls and women with albinism because of the belief that their body parts have
magic or medicinal qualities. This situation has been caused by the myth that having sexual
intercourse with a woman with albinism can cure HIV/AIDS. As a result, persons with
albinism, in particular women and children, are more susceptible to HIV infections and face
further stigmatization and self-isolation. Persons with albinism who are HIV-positive may
not seek treatment for fear of being easily identified. All those factors constitute a
multifaceted barrier affecting the right to live in dignity and the life expectancy of persons
with albinism, in particular, women and children with albinism.
B. Impact of health issues on socioeconomic rights
43. The absence of reasonable accommodation for visual impairment and health care
regarding susceptibility to cancer hamper the enjoyment of the right to health, as well as
other socioeconomic rights. Access to education and employment by persons with albinism
are particularly undermined.
Right to education
44. Visual impairment and the associated lack of reasonable accommodation represent a
serious barrier to keeping children with albinism in school. In addition to stigmatization and
bullying, visual impairment partly accounts for low school attendance. The high
susceptibility of skin to cancer and other conditions also act as barriers in accessing
education when reasonable accommodation is not provided. For instance, participants at the
first Fiji Albinism Awareness Symposium, held in 2015, observed that vision aids and
sunscreen were not generally available for children in village schools.
45. Often, the absence of reasonable accommodation at school is due to the lack of
awareness about albinism among communities and teachers. For instance, the belief that
32 Submission of Connexion Worldwide.
33 J.S. Taylor and P.M. Lund, “Experiences of a feasibility study of children with albinism in Zimbabwe:
a discussion paper”, International Journal of Nursing Studies, vol. 45, No. 8 (2007), p. 1250.
34 Submission of Stukie Motsa Foundation, Swaziland.
35 Submission of Connexion Worldwide.
36 P. Jeambrun, “Oculocutaneous albinism: clinical, historical and anthropological aspects”, Archives de
pédiatrie: organe officiel de la Societe francaise de pediatrie, vol. 5, No. 8 (August 1998), pp. 896–
907.
children with albinism develop blindness is widespread across the medical and educational
sectors and is resulting in children being taught Braille when they do not require it. In some
countries those with albinism are registered as “legally blind” or “blind”, although this does
not mean they have no vision.37
Right to work
46. The overall health situation of persons with albinism described above, along with
discrimination and stigmatization, represent a barrier to favourable conditions of work, in
particular regarding safe and healthy working conditions. 38 For instance, in a study on
members of the Tonga community with albinism living in a remote area of Zimbabwe, it
was highlighted that sensitive skin and photophobia prohibited them from participating in
agricultural and fishing activities and that very few other opportunities for work existed.39
47. Furthermore, the appearance of skin cancer lesions on persons with albinism, often
confused with albinism itself due to the lack of awareness, leads to even more
stigmatization and exposes persons with albinism to further discrimination, particularly
when seeking employment.40 In Pakistan, many persons with albinism “referred to their
cosmetic disability as one of the reasons for their joblessness”.41 Similarly, in Nigeria,
“social discrimination, often associated with albinism, constitutes a major obstacle to
building of social relationships and finding/maintaining an occupation among persons with
albinism”. 42 Reported examples of discrimination and stigmatization in India include
refusing to provide work placements and having to sign a declaration to release a college
from its duty to provide placements to students.43 Similarly, in Spain, it was reported that
persons with albinism had been discriminated against based on their physical appearance, in
particular in employment that required direct contact with clients. Potential employers
considered that their appearance could have a negative impact on their business.44
Women and girls’ rights
48. As pointed out above, women and children, in particular girls, suffer multiple
discrimination owing to targeted rape by persons with HIV/AIDS. Consequently, survivors
of sexual violence can experience increased health complications, such as post-traumatic
stress disorder, pregnancy and sexually transmitted infections.45
C. Psychosocial impact and mental health
49. Mental health has been identified by persons with albinism as one of their major
health issues. 46 The issue is global, as the psychological and mental impact of
stigmatization is reported worldwide. The need for psychological and rehabilitative support
should not be underestimated; not only for those that have survived attacks and mutilation,
but also for all persons with albinism who experience fear, bullying, stigmatization, lack of
37 P. Lynch, P. Lund and B. Massah, “Identifying strategies to enhance the educational inclusion of
visually impaired children with albinism in Malawi”, International Journal of Educational
Development, vol. 39 (2014), pp. 216–224.
38 International Covenant on Economic, Social and Cultural Rights, art. 7 (b).
39 Patricia M. Lund and others, “Oculocutaneous albinism in an isolated Tonga community in
Zimbabwe”, Journal of Medical Genetics, vol. 34, No. 9 (1997), pp. 733–735.
40 See A/HRC/31/63, para. 39.
41 Azam Jah Samdani and Bahram Khan Khoso, “A unique albino village of Bhatti tribe in rural Sindh,
Pakistan, with oculocutaneous albinism manifestations: an epidemiological study”.
42 N.N. Udeh and others, “Oculocutaneous albinism: identifying and overcoming barriers to vision care
in a Nigerian population”, p. 512.
43 Information from persons with albinism.
44 Asociación de Ayuda a Personas con Albinismo, Spain.
45 Under the Same Sun, “Kenyans with albinism and racial discrimination”, 2017.
46 Information received from persons with albinism.
social life, rejection by families and isolation, leading to depression and mental illness.47 In
Kuwait, for instance, persons with albinism face psychological and social challenges,
although they benefit from health care and are not the subject of superstitious beliefs.48
50. In Brazil, a study found that the quality of life of persons with albinism is not only
affected by poor vision and skin lesions, but also by social stigmatization. Similarly, in
South Africa, research highlights that “it is often the negative response to albinism by
others that is more hurtful, especially to children, than having to cope with the condition
itself”. 49 In Côte d’Ivoire, persons with albinism bear testament to the fact that
discrimination and exclusion lead to the loss of self-esteem, isolation, sleep disorders and
attempted suicide.50
51. In Ondo State in Nigeria, a study found that elderly people with albinism
experienced several psychosocial problems, such as harassment, abandonment, neglect,
withdrawal, isolation, rejection, divorce, labelling, stigmatization, suspicion, frustration and
limited opportunities.51
52. The oppressiveness of isolation has been observed in Pakistan, where persons with
albinism felt different, abnormal, abandoned and helpless, as they were excluded from
health care and services.52 In Zimbabwe, “The Zimbabwe Albino Society maintains that
many families keep children with albinism hidden at home, not sending them to school
because of the associated stigma and bullying from both children and adults. Consequently,
self-esteem is extremely low in children with albinism.”53
53. Another negative impact on mental health is caused by the aggravated
discrimination of those subject to the stigmatization triggered by the appearance of skin
cancer lesions on persons with albinism, which, in several countries, are mistakenly
perceived to be a natural part of albinism.54 Indeed, the “skin, being the largest organ in the
body, carries immense psychological significance”.55 Therefore, “disfiguring skin disorders
… may negatively distort a patient’s body image”.56
54. Furthermore, such stigmatization may have far-reaching psychopathological
consequences, such as self-exclusion from services, alienation and social withdrawal, loss
of identity, poor self-image, depression and anxiety.57 With regard to self-exclusion, this
has been observed even in institutions of higher education. A study on the beliefs and
stereotypes concerning albinism at a South African university found that “students with
albinism tend[ed] to exclude themselves from the rest of the student community to avoid
discrimination and stereotypes around their condition”.58
55. Social isolation strategies often have negative psychological consequences, such as
depression and anxiety. Such an impact also derives from perceived stigmatization, which
“relates to feelings of shame and the oppressive fear of enacted stigma and predisposes the
47 Submissions of Portail des Droits des Personnes Handicapées en Afrique de l’Ouest, Connexion
Worldwide and the Rwanda Albinism Society.
48 Submission of Kuwait.
49 P.M. Lund, “Oculocutaneous albinism in southern Africa”, pp. 170–171.
50 Submission of Association Ivoirienne pour la Promotion des Femmes Albinos.
51 Awoniyi Babafemi Adeyanju, Omisakin Folorunso Dipo and Alao Moses Taiye, “Health and
psychosocial complaints of elderly albinos in Ondo State, Nigeria”, Indian Journal of Gerontology,
vol. 29, No. 3 (2015), pp. 364–381.
52 Azam Jah Samdani and Bahram Khan Khoso, “A unique albino village of Bhatti tribe in rural Sindh,
Pakistan, with oculocutaneous albinism manifestations: an epidemiological study”.
53 J.S. Taylor and P.M. Lund, “Experiences of a feasibility study of children with albinism in Zimbabwe:
a discussion paper”, p. 1250.
54 See A/HRC/31/63, para. 39.
55 Chukwuma M. Attama and others, “Quality of life of subjects with leprosy and albinism”,
International Neuropsychiatric Disease Journal, vol. 6, No. 4 (2016), pp. 1–6.
56 Ibid., abstract.
57 Relebohile Phatoli, Nontembeko Bila and Eleanor Ross, “Being black in a white skin: beliefs and
stereotypes around albinism at a South African university”, African Journal of Disability, vol. 4, No.
1 (2016).
58 Ibid., p. 9.
stigmatized persons to behaviours that avoid exposing their condition to protect themselves
from experiencing discrimination”.59
56. The emergence and manifestation of stigmatization “represent the intersection of
psychological processes with the cultural construction of the condition”.60 In the case of
persons with albinism, Carolyn Palmer observed that myths, stereotypes and self-perception
did have an impact on self-esteem.61 Regarding the impact of culture, research conducted in
Malawi found that children with albinism and their families experienced “a range of
cultural and social events that impact strongly and negatively on their mental and social
well-being.62
57. Similarly, in Zimbabwe, it was reported that “in a society where albinism is
[steeped] in myth and superstition, regarded as a curse and contagion, affected families lack
a supportive environment and often felt isolated and helpless”.63 Thus, families are also
subject to the impact of stigmatization, apart from cases in which parents and family reject
children with albinism.
D. Health of displaced persons
58. When displaced, persons with albinism face particular risks, such as a heightened
risk of violence, particularly violence related to witchcraft practices, exploitation and abuse,
including sexual and gender-based violence, as well as high levels of stigmatization. In
addition, persons with albinism, as persons with disabilities, also face numerous barriers in
access to humanitarian assistance, education, employment, health care and other services;
and are often excluded from decision-making processes and leadership opportunities.
59. In certain countries, persons with albinism have fled and continue to flee their
homes in the wake of attacks. In the United Republic of Tanzania, as a temporary
protection measure, certain schools and centres have been designated as centres of refuge
for persons with albinism.64 Most of those are government-run and a few others are private.
The designated schools were originally designed for a limited number of people with
particular disabilities and special needs. However, as an emergency measure in response to
attacks, some of them have had to accept an unsustainable number of persons with albinism
who are seeking protection. In addition, such shelters can no longer be considered
temporary, and have ceased to be considered as exceptional emergency measures. Other
less formalized centres of refuge, such as police stations, have been reported in other
countries, such as Burundi. However, up-to-date information on those centres is sparse.65
60. In an assessment of the situation in the United Republic of Tanzania carried out in
2015 by the African Committee of Experts on the Rights and Welfare of the Child, the
Committee noted “the deteriorating health conditions of the children”. 66 They further
elaborated that children at one of the main centres, Buhangija, were suffering from various
forms of health-related challenges. For instance, many could not afford simple remedies,
59 Ibid., p. 8.
60 Ibid., p. 3.
61 Carolyn Palmer, “Myths, stereotypes and self-perception: the impact of albinism on self-esteem”,
British Journal of Visual Impairment, vol. 25, No. 2 (2007), pp. 144–154.
62 P. Lynch, P. Lund and B. Massah, “Identifying strategies to enhance the educational inclusion of
visually impaired children with albinism in Malawi”, p. 6.
63 J.S. Taylor and P.M. Lund, “Experiences of a feasibility study of children with albinism in Zimbabwe:
a discussion paper”, p. 1251.
64 See
http://tbinternet.ohchr.org/Treaties/CRC/Shared%20Documents/TZA/INT_CRC_NGO_TZA_18032_
E.pdf.
65 International Federation of Red Cross and Red Crescent Societies, “Through albino eyes: the plight of
albino people in Africa’s Great Lakes region and a Red Cross response”. Available at
https://reliefweb.int/sites/reliefweb.int/files/resources/E492621871523879C12576730045A2F4-
Full_Report.pdf.
66 “Report on the investigative mission on the situation of children with albinism in temporary holding
shelters — Tanzania” (2016), p. 7.
such as sunscreen, that would protect them from the elevated risk of developing skin
cancer. A medical screening camp found out that 80 per cent of the children had sunburns
and signs of pre-cancer. Most of the children with albinism had visual impairments, fungus,
severe wounds on their skin and suffered from complicated health problems accompanied
by high fever. It was also indicated that malaria was a major challenge.67 The dispensary
and sickbay on site was found to be too small and ill-equipped to attend to those issues,
such that the health of the children was severely endangered.
61. In 2017, the Independent Expert visited some of those centres, including Buhangija,
and noted some improvements. However, she also pointed out that more needed to be done,
including to ensure implementation of plans to increase living accommodation, the
provision of adequate meals and the safe reintegration of residents back into their families
and communities.68
E. Health and sustainable development
62. Human rights are increasingly recognized as essential to sustainable development
and are the main aim of the Sustainable Development Goals.69 The goals refer to the core
content of the right to health, namely ensuring healthy lives and promoting well-being for
all at all ages. To that end, specific targets are listed, including those particularly relevant to
the situation of persons with albinism. They include universal access to health-care
services, access to quality essential health-care services, financial risk protection, and
access to affordable essential medicines and vaccines.70
63. Furthermore, a key principle of the Sustainable Development Goals is to leave no
one behind. This is repeated seven times throughout the 2030 Agenda and applies to
sectional goals, including on health. Persons with albinism have historically been left
behind in terms of health services. A quintessential example is the absence of sunscreen on
the list of essential medicines of many countries that have sunny climates and therefore the
lack of access to such products.
64. That lack of access to a fundamental health product for persons with albinism leads
to loss of life. Some may view such a loss as a mere drop in the economic bucket, since
persons with albinism are a minority quantitatively speaking. Yet, the loss of one life is one
too many and such a view would not be in accordance with the unconditional nature of
fundamental human rights, particularly the right to life, or the prohibition of discrimination
in implementing States’ obligations deriving from the right to health. Finally, such a view is
at odds with the Sustainable Development Goals, which are aimed at reaching everyone,
beginning initially with those furthest behind.
65. The Sustainable Development Goals provide a framework for action and underpin
the priority accorded to health initiatives by the Independent Expert, including through the
Regional Action Plan on Albinism in Africa (2017–2021), which she developed with
multiple stakeholders in sub-Saharan Africa.
F. Health financing
66. Persons with albinism are particularly vulnerable in low-income countries, in which
they are often poor and public health services are limited.71 In such countries, Governments
often face many challenges in guaranteeing the progressive realization of the right to health,
in accordance with international human rights obligations. At the same time, it is reported
that many persons with albinism face the likelihood of early death from skin cancer — a
condition that is preventable with basic and affordable interventions. Moreover, the
67 Ibid., p. 8.
68 See www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21915&LangID=E.
69 See www.ohchr.org/EN/Issues/MDG/Pages/The2030Agenda.aspx.
70 See targets 3.7 and 3.8 of the Sustainable Development Goals.
71 See A/72/169, para. 19.
majority of persons with albinism do not have access to, or are unable to afford, the
necessary protective devices, whether for skin cancer prevention or to accommodate visual
impairment.72
67. In this context and in accordance with international human rights law, States have
the immediate obligation to ensure, at the very least, minimum essential levels of the right
to health for persons with albinism,73 to take steps towards the realization of that right74 and
to refrain from discrimination against persons with albinism.75 In that regard, States should
prioritize health resources for the most poor and marginalized, even in the face of barriers,76
and adopt or facilitate low-cost measures that would have an immediate impact on the
health of persons with albinism, such as including sunscreen in the list of essential drugs
and providing sun protection clothing and devices.
68. States should resort to international cooperation and external funding when
resources are scarce. They should support the work of organizations and agencies
developing and implementing programmes on the right to health of persons with albinism.
In that regard, the Committee on Economic, Social and Cultural Rights recognizes that non-
State actors — in addition to States, which are the primary duty-bearers — should also bear
responsibility for the right to health. States parties should therefore provide an environment
that facilitates the discharge of those responsibilities.77
69. Local governments can also play a pivotal role, as reported by the Source of the Nile
Union of Persons with Albinism in Uganda, in which “some local governments in the
Busoga subregion have started to include small budget allowances to support persons with
albinism, and some of this allowance may be used to purchase sunscreen, although the
allowances are not sufficient to meet total needs”. The complementary actions of national
Governments, local governments, civil society and international organizations could fill the
affordability gap.78
V. Best practices
70. There are several best practices worth highlighting as effective initiatives in
guaranteeing the right to health of persons with albinism. They include innovative
initiatives with minimal cost implications, which promise potential for scaling-up and
replication.
A. Country strategies
The Fiji Albinism Project
71. The Fiji Albinism Project is an initiative — initially undertaken by civil society that
later involved government institutions — which developed a national response to the needs
of persons with albinism. The project emerged from the first Fiji Albinism Workshop, held
at the Fiji School for the Blind in 2014. The project’s steering committee was formed
within the Ministry of Health. The project subsequently organized the first Fiji Albinism
Awareness Symposium in 2015.
72. Several barriers affecting the lives of persons with albinism in Fiji were identified
during the symposium, including: lack of accurate demographic national data on persons
with albinism; limited understanding of albinism in the health and education sectors;
72 Such as in Mwanza, United Republic of Tanzania, as reported by the Mwanza Albino Society.
73 Committee on Economic, Social and Cultural Rights, general comment No. 14, para. 43.
74 Ibid., para. 30.
75 Ibid., para. 43.
76 A/72/169, para. 19.
77 General comment No. 14, para. 42.
78 Ibid.
limited multisectoral communication; and lack of access to services to support persons with
albinism and lack of designated funding.79
73. As a result, the symposium fostered the implementation of measures to address the
health issues of persons with albinism, including awareness at community level, notably to
overcome the cultural issues preventing the wearing of hats and sunglasses, as well as
through a campaign addressing provincial service officers. Recommendations included
increasing awareness at the educational level, granting permission to wear protective
clothing and ensuring the application of sunscreens in school settings. Reasonable
accommodation was also recommended, including allowing children with albinism to sit at
the front of the class with their backs to the windows, mobility around the classroom to
improve vision and access to documents with large print.
74. At the national and regional levels, there were recommendations to increase access
to health services across the country, through monthly albinism clinics and low-vision
clinics. As regards affordability and accessibility, there were recommendations made at the
Symposium to investigate the possibility of producing sunscreen locally and distributing it
through clinics and schools. In the meantime, as part of the project, monthly skin and eye
clinics are organized in Suva. 80 Similarly, there was a suggestion to provide low cost
sunglasses through the Fiji Society for the Blind.
75. Finally, the project is governed through multisectoral coordination among the
ministries responsible for health, education and women’s issues. Modalities of work include
the sharing of information, measures to enhance individual care and the appointment of
dedicated staff. While the Ministry of Health provides skin and eye clinics, civil society
provides free sunscreens and eyeglasses and the Ministry of Education disseminates
information on albinism. Today, the main challenges of the project are funding and data
collection.81
Kenya
76. In 2015, the Government commenced a programme for the purchase and distribution
of sunscreen for people with albinism through the National Council for Persons with
Disabilities and the Kenya Medical Supplies Authority.82 In 2016, the Albinism Society of
Kenya reported that more than 1,000 persons with albinism had been provided with
prescription glasses and other optical devices.83
77. High-level stakeholders and leaders in the sector, such as Grace Mumbi Ngugi, Isaac
Mwaura and other persons with albinism, convinced the Government to allocate funds for
the provision of sunscreen in hospitals, as well as free protective clothing for persons with
albinism. As a result, a programme on albinism, with a dedicated officer, was established at
the National Council for Persons with Disabilities. Its initial goal was to register persons
with albinism so as to plan the allocation of public resources.
78. The programme has been granted significant funding to deliver support to persons
with albinism, including the provision of free sunscreen in district hospitals. However, it
has been reported that challenges persist, particularly as regards accessibility and the
affordability of services. For example, persons with albinism often live far away from
district hospitals and free sunscreen is not available to them locally. In addition, it was
reported that screening and treatment for skin cancer were not free of charge.84
79 Fiji Albinism Project, “Summarised report” (2015).
80 Charlene Lanyon, “Albinism project”, Fiji Times Online, 10 August 2016.
81 Vishaal Kumar, “Albinism project faces big hurdles”, Fiji Times Online, 15 June 2017.
82 Under the Same Sun, “Kenyans with albinism and racial discrimination”.
83 See www.albinismsocietyofkenya.org.
84 Diana Wangari, “For people with albinism living in Africa, Kenya offers a haven of hope”, Star
(Kenya), 10 October 2017.
Nigeria
79. In 2012, the Government of Nigeria, under the auspices of its Ministry of Education,
adopted a national policy on albinism. The policy outlines the main health challenges faced
by persons with albinism, including recommendations on the prevention and treatment of
skin cancer. 85 The policy is holistic and covers several areas of work, including the
promotion of self-esteem and a feeling of belonging, along with access to health and the
promotion of free ophthalmological and dermatological services.
80. To that end, the policy establishes a target, to be achieved by 2020, of a 50 per cent
improvement in accessing qualitative and affordable health and social services by persons
with albinism. The interventions outlined in the policy will provide basic information and
medical services for the prevention of visio-dermal health issues related to albinism;
provide counselling and psychosocial services for persons with albinism by health systems
stakeholders in public and private sectors; secure free, accessible qualitative treatment and
rehabilitation of persons with albinism with skin cancer, sunburn and low vision.
81. The Ministry of Health, in partnership with the National Hospital in Abuja and the
Albino Foundation, coordinate a project on free skin cancer treatment, which provides
treatments that have a direct impact on avoiding premature deaths. According to the Albino
Foundation, free medical treatment has been provided to over 4,000 persons with albinism
who have skin cancer. 86 Today, the main challenges of the project are inadequate
integration or mainstreaming in the health sector, funding and access to treatment, as the
travel costs to Abuja remain prohibitive for most and subsidies by the Albino Foundation in
this regard are limited.
United Republic of Tanzania and Malawi
82. In the United Republic of Tanzania and Malawi, the mobile clinics specifically
attending to persons with albinism who live in non-urban centres have had a highly positive
impact on skin cancer prevention and treatment, as well as reasonable accommodation for
visual impairment.
83. In the United Republic of Tanzania, the Regional Dermatology Training Centre at
the Kilimanjaro Christian Medical Centre has developed a comprehensive care programme
for persons with albinism. The programme includes the registration and periodical health
inspection of persons with albinism in different regions of the country; the provision of free
dermatological services; education and awareness-raising on the importance of sun
protection; and distribution of sun protection materials. In conjunction with Kilimanjaro
Sunscreen (KiliSun) and Standing Voice, it covers 10 regions and reaches 2,000 persons
with albinism.
84. Furthermore, the programme produces the locally made sunscreen, Kilimanjaro Sun
Care or KiliSun, at the Kilimanjaro Sunscreen Production Unit. The unit produces and
ensures a free supply of KiliSun, promotes the use of local resources and seeks to avoid
reliance on external donations of commercial sun protection products.
85. This production of sunscreen responds to the realities and needs of persons with
albinism, following a bottom-up approach. It offers a sun protection factor of at least 30 and
protection against ultraviolet A and B radiation. The unit, in collaboration with health
workers, community dermatologists and civil society, including the Tanzania Albinism
Society and Standing Voice, ensure the quality of distribution, including assessment and
education on the use of sunscreen.87
86. Moreover, in 2018, the Association of Persons with Albinism in Malawi will launch
its first sunscreen pilot production in nine districts, in anticipation of the launch of a full-
scale production unit in 2019 or 2020. This initiative is coordinated with the Government,
United Nations agencies and KiliSun, and represents direct follow-up to the
85 National policy on Albinism.
86 See albinofoundation.org.
87 Information received from KiliSun.
recommendations of the Independent Expert, which were based on her visit to the country
in 2016.
B. Other responses
Technological responses
87. There are specialized institutions and organizations that provide information on
technological responses to the challenges posed by albinism, particularly visual aids and
sun protection devices. That is important, because such devices, separately or together, may
constitute a part of reasonable accommodation for each person with albinism. For instance,
the National Organization for Albinism and Hypopigmentation provides regularly updated
technical information on low-vision aids, including magnifiers, microscopes and telescopes,
non-optical devices and strategies to improve one’s vision. Similarly, the National Library
of Medicine in the United States of America provides online medical information on
albinism, including advice on genetic testing to identify the type of albinism and
management of its signs and symptoms, particularly visual impairment and skin protection.
88. In Kuwait, technological services and approaches are applied in all hospitals to
ensure complete diagnosis, including physical examinations, descriptions of changes in
pigmentation, thorough eye examinations and genetic testing.88
Access to surgery and more specialized treatment
89. The type of surgery required for treating visual impairment may include strabismus
surgery for either functional (improved peripheral fusion) or cosmetic procedures. Skin
cancer treatment, including where there is a slightly enhanced risk of cutaneous melanoma,
is not specific to albinism and includes cryogenic treatment, radiotherapy and
chemotherapy.89
Early intervention measures: registration, counselling and training of nurses and
medical staff, particularly in more remote areas
90. Registering persons with albinism at birth represents an important first response to
address their health condition. Firstly, it provides the opportunity to inform and counsel the
mother and the family about albinism and measures regarding skin protection and
managing visual impairment as the child grows. Early information and care increase the
prospect of the highest attainable standard of health of persons with albinism. However,
records must have adequate safeguards to ensure the right to privacy and to prevent misuse
of data for attacks, discrimination or other illicit acts.
91. Many studies confirm the need for awareness-raising and training of nurses and
medical staff on albinism, particularly in remote areas. In this regard, good practices have
been documented in South Africa in the clinical genetic outreach programme. That
programme, which began in 1990, operates as a form of early intervention in the following
manner: senior nurses at large rural hospitals, trained in medical genetics, form a network
of professionals who identify babies with common genetic disorders at birth and offer
immediate support and counselling.90
92. Counselling for mothers is essential in overcoming ignorance and misbeliefs about
albinism and encouraging acceptance of their children. It also provides advice on the care
necessary to prevent skin cancer. Counselling mothers can also prevent infanticide by
demystifying the condition of albinism. In that regard, training on albinism for midwives
and traditional birth attendants should be prioritized.91 In addition to counselling, early
intervention kits should be made available. For instance, the Kuwait Medical Genetic
88 Submission of Kuwait.
89 United States of America, Department of Health and Human Services, National Institutes of Health.
90 P.M. Lund, “Oculocutaneous albinism in southern Africa”, p. 170.
91 Submission of the Source of the Nile Union of Persons with Albinism.
Centre provides parents with instructions and advice on precautions to help children learn
self-care practices.92
Reaching circles of persons affected
93. A 2006 epidemiological study on albinism in sub-Saharan Africa, based on a World
Health Organization pilot survey, investigated the situation of people with albinism in
Africa, estimated that there were tens of thousands of people living with albinism in Africa
and called for increased awareness and public health interventions to respond adequately to
the medical, psychological and social needs of people with albinism. It recommended that,
based on the estimates available and the severity of social issues faced by persons with
albinism and their families, there should be a public health response to increase attention on
this group of people.93
94. It is important to note that the above-mentioned study was conducted in advance of,
and therefore without reference to, the violent attacks on persons with albinism, which were
first reported internationally in about 2006. It is safe to say that its recommendation to
extend support to all those directly affected by albinism has become even more compelling
in the light of those attacks, as reports sent to the Independent Expert indicate that family
members have also been affected by the attacks, both directly and indirectly. In recognition
of the situation, the United Nations Voluntary Fund for Victims of Torture has provided
funding to civil society to provide medical, psychological and social assistance support to
persons with albinism who are attacked, together with their families.
95. Civil society organizations, such as Standing Voice and Under the Same Sun in the
United Republic of Tanzania, are also trying to meet the need to assist family members of
persons with albinism by running women’s groups across the country. These groups consist
of women with albinism and mothers of children with albinism. Various civil society
groups globally have also reported doing outreach for the family members of persons with
albinism in their ordinary course of work. However, these acts are only a drop in the
bucket, as they are often ad hoc and not systemized, and therefore have limited reach.
VI. Conclusion and recommendations
96. The main health issues faced by persons with albinism, namely visual
impairment, high susceptibility to skin cancer and misbeliefs about the condition of
albinism, have been known for more than half a century. Today, responses to those
issues are mainly led by the tireless work of nascent organizations of persons with
albinism and other civil society organizations, and are supported by research in this
area. Nevertheless, those measures still need to be mainstreamed in health policies and
strategies worldwide.
97. Accordingly, the Independent Expert recommends that Member States,
particularly those in which there are records of attacks and in which the issue has
been left out of mainstream health policies:
General measures
(a) Address health-related aspects of albinism as a public health concern;
(b) Ensure the adoption of special measures on persons with albinism in
policies governing health and disabilities, as well as the training curricula of health-
related professions.
92 Submission of Kuwait.
93 Esther S. Hong, Hajo Zeeb and Michael H. Repacholi, “Albinism in Africa as a public health issue”,
BMC Public Health, vol. 6 (2006). Available at www.ncbi.nlm.nih.gov/pmc/articles/PMC1584235.
98. In this regard, the Independent Expert also recommends that member States:
(a) Include specific services for persons with albinism in existing health
centres;
(b) Provide guidance for health professionals on the care needed by persons
with albinism and ensure that the training of health workers, including
ophthalmologists, dermatologists and nurses, includes topics on the condition of
albinism and protective measures;
(c) Ensure that albinism is included in early intervention programmes on
health, including dissemination of detailed health-care information and advice;
(d) Develop specific, concrete and time-bound national action plans on
albinism;
(e) Ensure the prompt provision of medical and psychological support to the
victims of attacks and their families;
(f) Ensure that the right to the highest attainable standard of health is
exercised without discrimination of any kind, in particular against persons with
albinism;
(g) Adopt special measures, if necessary, to guarantee equal access to health
care for persons with albinism. Such measures should be based on statistical data and
supported by adequate funding;
(h) Gather data systematically on persons with albinism, including when
collecting data on health or disabilities, and by inserting a specific question on
albinism in questionnaires when conducting population censuses;
(i) Adopt public health policies to address issues affecting persons with
albinism, ensuring their full participation in the process of elaborating such policies
and in awareness-raising action on such policies;
(j) Ensure that measures regarding the right to health of persons with
albinism are the responsibility of the institution in charge of the issue, such as the
ministry responsible for health;
(k) Ensure that the institution in charge of the issue, such as the ministry of
health, carries out its mission in coordination with other relevant institutions, such as
those in charge of disabilities, education, labour and social protection, as well as those
with responsibility for women and children’s rights.
99. Concerning skin cancer and visual impairment, the Independent Expert
recommends that member States:
(a) Include sunscreen on the list of essential medicines without further
delay;
(b) Ensure the availability, accessibility, affordability and quality of
treatment for skin cancer without discrimination. Such treatment should include
curative measures, as well as cosmetic treatment to restore or improve appearance to
avoid further discrimination based on appearance;
(c) Deliver accessible and culturally appropriate rehabilitation
programmes, particularly concerning skin cancer and visual impairment;
(d) Support or initiate the production and distribution of locally produced
sunscreen, such as KiliSun. Distribution should include health education on the use of
such a product;
(e) Support best practices, such as mobile clinics where they exist or initiate
such measures;
(f) Ensure that specific measures for persons with albinism are integrated
into disability-related programmes, including the distribution of vision devices as a
means of reasonable accommodation;
(g) Facilitate the importation of glasses and gadgets as a measure of
reasonable accommodation, for example, by removing taxes and administrative costs
associated with the importation of these goods.
100. With regard to exogenous conditions affecting the enjoyment of the right to the
highest standard of physical and mental health, the Independent Expert reiterates her
previous recommendations that member States, particularly those in which there are
records of attacks:
(a) Conduct in-depth research on the root causes of attacks against persons
with albinism, including on harmful practices related to witchcraft;
(b) Develop and implement long-lasting awareness-raising campaigns, as
they are critical in addressing the harmful practices and rampant myths affecting the
enjoyment of human rights by persons with albinism;
(c) Review and adapt legal frameworks, as needed, to ensure that they
encompass all aspects of the attacks against persons with albinism, including with
regard to the trafficking of body parts;
(d) Regulate the practice of traditional medicine, including through
mechanisms such as Government-led licensing and monitoring regimes in both urban
and rural areas, and establish adequate standards for traditional medicine;
(e) Ensure that social services are accessible to persons with albinism
without discrimination and with reasonable accommodation, in particular in a
manner that does not subject them to further stigmatization or require them to be
exposed to the sun in order to receive support from social services;
(f) Cooperate with civil society organizations that provide support to
persons with albinism and their families.
101. The Independent Expert recommends that civil society and Governments
should, in the course of their work and in collaboration:
(a) Continue to conduct quality research to shape public policy and
effectively implement sun protection strategies;
(b) Support prevalence and epidemiological studies as a basis for developing
effective measures;
(c) Publish data acquired in the course of their work to inform collaborative
work and develop policies and adequate measures;
(d) Continue to raise awareness to:
(i) Include specific information on albinism and, in particular, susceptibility
to skin cancer in training for health professionals;
(ii) Ensure that there is no barrier to the recognition of persons with
albinism as persons with disability;
(iii) Use international albinism awareness day as an opportunity to inform
the general public about albinism and, whenever appropriate, engage in media
campaigns to this effect.
102. The Independent Expert recommends that the World Health Organization, in
response to recommendations made in the epidemiological study on albinism, pursue
or facilitate government action to ensure that albinism is taken up as a public health
concern, particularly where there are attacks and/or where there has been historical
neglect to the detriment of the enjoyment of human rights by persons with albinism.
103. The Independent Expert recommends that the international community,
including international organizations:
(a) Support efforts for the realization of the right to health of persons with
albinism, such as the scaling-up of best practices identified in the present report, and
by ensuring its insertion into existing health projects;
(b) Support epidemiological studies on albinism in order to gather the data
necessary to develop public health policies;
(c) Ensure that, in particular in regions affected by attacks, actions designed
to guarantee the right of persons with albinism to the highest attainable standard of
health are incorporated into existing health projects and programmes of general scope
and that, in addition, specific programmes are designed and given priority.