VISIT TO BRAZIL :REPORT OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM, IKPONWOSA ERO
It is currently pending adoption by Congress.10 Article 2 of the bill
(a) Developing and implementing a national registry;
(b) Developing the range of health-care products and encouraging the practice of
(c) Organizing the flow of health care;
(d) Defining the epidemiological profile;
(e) Training and building capacity among staff in the Unified Health System so
that they can address the various aspects of health care of persons with albinism;
(f) Improving integrated health care for persons with albinism.
(...) The Ordinance
aims at ensuring the universality, completeness and equity of health care for persons with
rare diseases in order to reduce morbidity and mortality, to establish care plans at all levels
of the health-care system, to ensure comprehensive health care for persons with rare diseases
in the health-care network, and to ensure that persons with rare diseases have timely access
to diagnostic and therapeutic resources.
23. (...) The
Independent Expert was informed that life expectancy among persons with albinism could
be as low as 33 years of age owing to an absence of timely and quality preventive and curative
care for skin cancer. Based on recent research, the prevalence of skin cancer in patients
enrolled in studies of the Pro-Albino Programme was 26 per cent, which is similar to that
found in persons with albinism by researchers in Tanzania (25 per cent) and South Africa (23
per cent).26 The same research indicated that persons with albinism in Brazil tend to face
similar prejudice and stigma to those experienced by their counterparts in African countries.
REPORT OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM ON HER MISSION TO THE UNITED REPUBLIC OF TANZANIA : NOTE / BY THE SECRETARIAT
Furthermore, the Ministry of Health, Community Development, Gender and
Children is in the process of developing the national guidelines on health-care fee waivers
for persons with disabilities to facilitate access to health care for such persons, including
persons with albinism.
33. (...) One of the main partners of the Centre’s mobile operations is the non-governmental
organization (NGO) Standing Voice. Its mobile skin-care clinics bring dermatologists to 33
sites in eight regions of the country every six months. (...) Furthermore, the hypervisibility and colouring of persons with
albinism, along with the lesions that skin cancer often leaves on their skin, combined with a
lack of general education on albinism, contribute to and strengthen the myths dehumanizing
persons with albinism.
REPORT OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM ON HER MISSION TO MALAWI : NOTE / BY THE SECRETARIAT
Owing to the lack of melanin in persons with albinism, they are particularly
vulnerable to skin cancer. In Malawi, skin cancer is a life-threatening condition for persons
with albinism as there are few facilities for adequate medical interventions. (...) In addition, free access to dermatological care for persons with albinism is
necessary to ensure that skin cancer is detected early and treatment readily provided.
73. (...) The use of mobile clinics to ensure that persons with albinism in remote areas can
be screened on a regular basis for skin cancer and vision assessment and care is a best
practice established in the region.
VISIT TO SOUTH AFRICA : REPORT OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM
The other key physiological consequence is vulnerability to skin cancer,
which is fatal when left untreated. (...) Entry points include training modules on
disabilities, on rare conditions and diseases and on skin conditions, and primary health-care
services. (...) At school, poor vision, skin problems,
social exclusion and lack of appropriate accommodation impede their progress.
REPORT OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM ON THE REGIONAL ACTION PLAN ON ALBINISM IN AFRICA (2017<U+2013>2021) : NOTE / BY THE SECRETARIAT
Include colour as a
prohibited ground of discrimination.
3 Health Care workers and midwife training State & all stakeholders I to M Train on albinism and early intervention particularly linked to
vision impairment and skin cancer (including preventive and
curative measures). (...) Include PWA in disability policy and benefits.
3 Skin cancer : access to adequate health care State I to L Provide system wide distribution of sun protection creams and
provide cancer, and pre-cancer treatment at no cost.
Reimburse cost if distance to care is far from residence.
Ensure no standing in the sun for school, work or access to
PROMOTION AND PROTECTION OF ALL HUMAN RIGHTS, CIVIL, POLITICAL, ECONOMIC, SOCIAL AND CULTURAL RIGHTS, INCLUDING THE RIGHT TO DEVELOPMENT :WRITTEN SUBMISSION BY THE NATIONAL COMMISSION ON HUMAN RIGHTS OF KENYA : NOTE / BY THE SECRETARIAT
This in turn leaves most of
them un-skilled and un-equipped for jobs and relegates them to menial work, including jobs
that expose them to the sun and subsequently to skin cancer. In other cases, the vision
impairment of persons with albinism has led to the assumption that they are all visually
impaired. (...) This is highly
commendable, given that skin cancer is the number one killer of persons with albinism in
Sub Saharan Africa.
(...) On the right to the highest attainable standard of health care, the Commission
recommends that the government, should establish programmes to support initiatives for
producing sun protection cream locally, facilitate free or low cost skin cancer treatment
across the country for persons with albinism and provide free or low cost visual aids to
enable persons with albinism to participate fully in all spheres of life.
REPORT OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM ON HER MISSION TO MOZAMBIQUE : NOTE / BY THE SECRETARIAT
The most common and visible type is
oculocutaneous albinism, which affects the skin, hair and eyes. Within this type, subtypes
reflect varying degrees of melanin deficiency in an individual. (...) Owing to the lack of melanin in persons with albinism, they are particularly
vulnerable to skin cancer. In Mozambique, as in various countries of the region, skin cancer
is a life-threatening condition for persons with albinism because there are few facilities for
adequate medical interventions. (...) Further, the use of
mobile clinics to ensure that persons with albinism in remote areas can be screened on a
regular basis for skin cancer is a best practice established in the region.
REPORT OF THE SPECIAL RAPPORTEUR ON CONTEMPORARY FORMS OF SLAVERY, INCLUDING ITS CAUSES AND CONSEQUENCES, GULNARA SHAHINIAN : ADDENDUM
(b) Discrimination based on nationality, race or skin colour
71. The Special Rapporteur received reports about the salary discrimination that migrant
domestic workers experience because of their ethnicity. (...) It therefore follows that, the lighter the domestic worker’s skin colour, the higher
the employer’s prestige: Filipino migrant domestic workers are of a lighter skin colour and
are more expensive than Nepalese migrant domestic workers, who are of a darker skin
(...) It pays for some
meals and medical care if a detainee has to go to hospital. Its social workers work on site
and provide recreational activities and a washing machine for the detainees.
VISIT TO PERU :REPORT OF THE WORKING GROUP OF EXPERTS ON PEOPLE OF AFRICAN DESCENT
These stereotypes also feed the impunity of discrimination based on skin colour
for Afro-Peruvians in public spaces outside schools.
51. (...) An administrative directive mandating the registration of ethnicity in
the health information system has not yet been implemented, preventing the development of an
understanding of the specific challenges that Afro-Peruvians face and the limits in their ability
to have access to quality health care. In particular, the lack of updated statistical data has made
it difficult to estimate how many Afro-Peruvian children do not have adequate access to health
care. (...) In 2014, 13 per cent of Afro-Peruvian children reported discrimination based on their
skin colour in schools. Peruvian researchers have confirmed that Afro-Peruvian children suffer
more racial discrimination than any other minority group.15
REPORT OF THE WORKING GROUP OF EXPERTS ON PEOPLE OF AFRICAN DESCENT ON ITS MISSION TO ITALY : NOTE / BY THE SECRETARIAT
The Working Group was informed that while the national health system should
provide all individuals in Italy, irrespective of their status and nationality, with essential
health-care services in every ordinary or emergency case, racial discrimination continues to
prevent access to health care. (...) Moreover, there are variations among the regions in terms of providing health-care services.
In Lombardy, for instance, emergency health care is given to undocumented migrants but
longer-term health care, for example for cancer, is not.
(...) The Working Group noted that all those arriving received medical care and
basic necessities such as food, clothing and drinking water.