This past Sunday, December 3, was the United Nations International Day of
Persons with Disabilities. This annual observance aims to focus the world’s
attention on issues that affect the dignity and well-being of persons with
disabilities, this year’s theme is a call to action to rescue and achieve the
Sustainable Developmental Goals (“SDGs”) for, with, and by persons with
disabilities.
Sadly, the global health community has failed to uphold SDG 3, which is
focused on ensuring healthy lives and well-being for all, for a major group of
people with disabilities. As world leaders continue to meet at the annual UN
Climate Change Conference, COP-28, to address the climate crisis, persons
with albinism, continue to battle epidemics like skin cancer and early deaths
due to the impacts of the changing climate without the policy and medical
support they need. 2023 is poised to be the hottest year on record, with global
temperatures rising 1.4 degrees Celsius above pre-industrial levels.
This year, COP-28 had its very first Health Day where the Director-General of
the World Health Organization (WHO), Dr. Tedros Ghebreyesus, highlighted
the need to prioritize health in climate negotiations due to the continued
impact of climate change on both communicable and non-communicable
diseases. The WHO has reiterated its commitment to integrating climate
change into all its programs and noted the importance of protecting people’s
health in the context of the climate crisis.
In addition to the WHO, more than 40 million health professionals called for
support from communities most vulnerable to the impacts of climate change at COP-28. Although people with albinism are one of many communities
most affected by the health impacts of climate change, and need access to
protective medical products, the WHO has yet to reinstate lifesaving
sunscreen lotion with SPF 50, and UVA and UVB protections to its essential
medicines list. There will be serious repercussions if we continue to delay
protecting the human right to health, saving lives, and working to achieve
the realization of SDGs for persons with albinism.
The link between climate change and skin cancer is clear — ultraviolet
radiation “(UVR) is considered a complete carcinogen due to its ability to act
as a mutagen and promote and initiate tumor formation without
inducement by another agent.” Regarded as one of the world’s most
common cancers, incidence rates of skin cancer have increased substantially
with the highest incidence observed in fair-skinned people. Squamous cell
carcinoma, is “well-accepted as accounting for the majority of cutaneous
malignancies globally”.
Albinism is a genetic condition that results in a lack of melanin which makes
persons with albinism susceptible to ultraviolet rays, increasing their risk of
developing deadly skin cancer. Research has shown that persons with
albinism are 1000 times more vulnerable to skin cancer than persons without
albinism, and are more likely to die from the disease by the age of 40.
For persons with albinism, particularly those in Africa, a multiplicity of
intersecting factors such as violations of their right to education and work,
affect their ability to enter formal employment which often results in a
majority of them living in poverty. As such, many persons with albinism are
forced to engage in informal employment activities such as farming and
vending, which include long days outside under the sun’s rays, often resulting
in the development of sunburn and painful blisters. These factors mean that
in addition to facing stigma and discrimination, many persons with albinism experience indigence, and have limited resources to cover their daily
expenses and the cost of sunscreen lotion out of pocket to maintain their
health.
Earlier this year, advocates lobbied the 24th WHO Expert Committee on
Selection and Use of Essential Medicines (Committee) to have sunscreen
lotion with SPF 50, with UVA and UVB added to the essential medicines list
to save the health and lives of persons with albinism. Advocates argued that
the addition of sunscreen lotion was particularly critical for persons in sunny
climates like Sub-Saharan Africa, where there are significant financial barriers
to the purchase of sunscreen.
The Committee, in April 2023, acknowledged that there is public health
relevance and effectiveness of sunscreen in preventing skin cancer in high-
risk subgroups such as people with albinism, but ultimately rejected the
application. They argued that before sunscreen could be added to the
essential medicines list, there was a need to “define relevant standards and
specifications for therapeutic (as distinct from cosmetic) sunscreen products”
to provide reliable guidance to states.
Persons with albinism, especially, children with albinism do not have the
luxury of time. The UN Independent Expert on the enjoyment of human
rights by persons with albinism has emphasized the urgency and gravity of
the situation stating that, “sunscreen is not a cosmetic product for people
with albinism — it is a life-saving medical product that can prolong and
improve the quality of life for many who don’t have the means to afford it.”
Although health has been championed as a priority during this week’s COP-
28 meetings on climate vulnerability, the health of people with albinism
continues to be overlooked. Any meaningful global action designed to
achieve the realization of SDGs for persons with albinism must respond to the realities of their lived experiences. They are the ones best placed to
understand and communicate their health needs and the global health
community must respect their autonomy, and respond accordingly. Adding
sunscreen lotion to the WHO essential medicine list is a human right and a
matter of upholding the dignity and well-being of persons with albinism.
