Original HRC document

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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 (20172021)

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 childrens 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.