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The Independent Expert on the enjoyment of human rights by persons with albinism will focus her report to the 80th session of the United Nations General Assembly on the right to health for persons with albinism. It is worthwhile to note that persons with albinism are also recognised as persons with disabilities due to their visual impairment and particular susceptibility to skin cancer as a result of the lack or absence of melanin in their skin.

Objectives

To inform her report, the Independent Expert wishes to receive written inputs from relevant stakeholders, including national governments, national and international non-governmental organizations, national human rights institutions, international and regional inter-governmental organizations, United Nations agencies and entities, activists, academics and persons with albinism themselves.

Due to the fact that skin cancer has particularly high morbidity and mortality rates for persons with albinism, particularly in high UV regions, this report will highlight skin cancer as a major health concern.

Key questions and types of input/comments sought

The Independent Expert invites all interested stakeholders to share their views and provide information on the following questions/issues:

Questions Focused on Skin Health and Skin Cancer

Policy Framework

1. Please provide information on the international and regional frameworks that your government has ratified or committed to in the effort to ensure the enjoyment of the right to health with persons with albinism/persons with disabilities. 
2. Please provide information on efforts made by your government to provide access to quality healthcare services and products in both the public and private health system. 
3. Please share information on any efforts, policies and programs by the government to provide access to sunscreen lotion and protective clothing to persons with albinism in your country? 
4. Is sunscreen lotion part of the national essential medicines list in your country? If yes, please cite the relevant law or policy. 
5. Is sunscreen lotion imported tax free in your country?
6. Have there been initiatives or programs implemented by the government or other stakeholders to raise awareness and educate the public on skin health for persons with albinism?

Human Rights Challenges or barriers to the enjoyment of the Right to Health

7. Please provide information on human rights concerns or barriers affecting the right to health of persons with albinism in your country.
8. Please share any social protection programs provided by the government to enable persons with albinism to access healthcare services and products? 
9. When persons with albinism visit public health facilities (clinics or hospitals) do they receive the necessary treatment for the ailment they are suffering from?
10. Are there any incidents of discrimination in public health services? If yes, please explain further?
11. Do persons with albinism have free or affordable and regular access to the following health services:
    1. Skin cancer screening and prevention
    2. Skin checks (every 6months)
    3. Dermatologists
    4. General Practitioner/doctor
    5. Skin cancer treatment (cryotherapy, chemotherapy etc)
    6. Oncologists
    7. Visual aids and vision health (monocular, prescription sunglasses, prescription spectacles, magnifying glasses)
    8. Ophthalmologists 
    9. Optometrists 
    10. Regular medical checks up for general wellness
    11. Specialists to maintain respiratory health and address excessive bleeding concerns
12. Is the sunscreen lotion available in your country easily accessible? Please explain what makes sunscreen accessible or inaccessible for persons with albinism?
13. Please indicate the places persons with albinism can source sunscreen in your country:
    1. Private pharmacies or chemist shops
    2. Government pharmacies or dispensaries
    3. Government health facilities (clinics/ public hospital)
    4. Supermarkets, sole traders
    5. NGO distribution events or clinics
14. Is the sunscreen lotion available in your country suited to the local climatic conditions and needs of persons with albinism? If no, what challenges exist with the sunscreen lotion that is available? 
15. Are education and awareness raising campaigns on skin health accessible to persons with albinism and caregivers of children with albinism in all areas of the country? (rural and urban) Explain.
16. Do individuals with albinism in your country have access to genetic testing to identify their specific type and related concerns?

GOOD PRACTICES

17. Are there any good practices that have been implemented to ensure access to quality healthcare services and products for persons with albinism/persons with disabilities?

How inputs will be used?

The inputs will be used to inform the report of the Independent Expert on albinism to the 80th session of the General Assembly. Contributors should indicate whether they do not consent to having their input published publicly.

Media inquiries

Input/comments may be sent by e-mail. They must be received by 18 April 2025.

Email address:
hrc-ie-albinism@un.org