A/HRC/43/42
untreated skin cancer. 53 Their resulting isolation further restricts their access to health
treatment for the cancer.
47.
In other countries, the lack of availability of health insurance coverage for albinismrelated health conditions or products, or the cost of such insurance, pose additional
barriers.54 Submissions from Argentina and Paraguay highlighted the high costs of adaptive
devices and sunscreen, which makes them unaffordable for a significant number of mothers
of children with albinism.
48.
Many mothers around the world who have children with albinism rarely have access
to specialists who have information on the condition. Therefore, the early health
intervention crucial to their child’s development is rarely available to them. 55 Thus, mothers
of babies and young children do not often have the necessary information on how to take
care of their child with albinism, including information on vision impairment and measures
to protect them from skin cancer.56 This can lead to the development of skin cancer that
could have been easily prevented. Moreover, the lack of adequate health information on
albinism has also led to distress, depression and self-blame among mothers of children with
albinism. Mothers reportedly suffer from postnatal depression after giving birth to a child
with albinism and are not adequately informed about their rights to available services for
the child and the necessary psychosocial care and support.57
49.
Sometimes, owing to their limited understanding of albinism, health professionals
give parents of children with albinism incorrect information. 58 A submission received from
Turkey indicates that some health professionals have erroneously told parents that their
baby with albinism would never be able to see and that they cannot leave the house because
of potential sun damage. 59 A submission from Mexico, among others, also noted that some
mothers of babies with albinism have been told that the condition would result in total
blindness, which is not usually the case.
50.
To compensate for the lack of support in national health systems, several nongovernmental organizations around the world60 provide support to new parents of children
with albinism. Such work should be increasingly supported by States and development
partners.
4.
Sexual and reproductive health
51.
Civil society organizations in several countries reported that women and girls with
albinism have limited or no access to sexual and reproductive health services. Reasons
provided include stigma and discrimination from health-care providers.61
52.
Access to maternal health care is another challenge in some countries. Midwives,
who are often the first contact with babies with albinism when they are born, often lack the
knowledge to give sound advice to concerned parents. 62 In some cases, health professionals
repeat prevailing myths about albinism or give parents erroneous information. This
discourages mothers of children with albinism from seeking services, including for their
sexual and reproductive health.
53
54
55
56
57
58
59
60
61
62
10
Submission from Guinea.
Submissions from Burkina Faso, Cameroon, Eswatini, Ghana, Kenya, Mali, Mozambique, Nigeria,
South Africa, United Republic of Tanzania, Uganda and Zimbabwe.
Submissions from Angola, Burkina Faso, Ghana, Japan, Kenya, Mozambique, Uganda and
Zimbabwe.
Submissions from Eswatini, Kenya, Mozambique, Nigeria, Somalia and United Republic of Tanzania.
Submission from Eswatini.
Submissions from Argentina, Colombia and Paraguay.
Submission from Turkey.
Submission from New Zealand (Albinism Trust). See also www.albinism.org/information-forparents-grandparents-and-caregivers/.
Submissions from Ghana, Kenya, Japan, Jordan, Mali, Slovenia (Government), Uganda and United
Republic of Tanzania.
Submission from Kenya.
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