Health for persons with albinism

Albinism is an inborn condition caused by a shortage of melanin, a skin pigment which protects one from ultraviolet light.

Prolonged exposure to ultraviolent light in persons with albinism causes skin lesions which eventually lead to cancer.

Melanin also provides pigmentation of eyes and hair. As such, albinism exposes people with the condition to lifelong physical and health problems, including visual impairment.

However, the condition is profoundly misunderstood, both socially and medically.

The appearance of persons with albinism is associated with superstitious beliefs and myths that strengthen marginalisation and social exclusion.

However, persons with albinism are people just like everyone else and many have excelled in their lives more than those with pigmented skin.

There should, therefore, be no cause for alarm or any form of discrimination based on this condition.

To address multiple challenges they face,  government adopted the National Action Plan on Persons with Albinism in Malawi.

The blueprint adopted in 2017 expires in 2022.

It assigned outlined tasks to different stakeholders to comprehensively address various albinism issues.

This article tackles albinism in Malawi from a health perspective because health is a fundamental human right for all.

The policy tasks the Ministry of Health to improve access to affordable and quality health services for persons with albinism at all levels.

In fact, only healthy people contribute positively to the socio-economic advancement of their family, community and country.

So the policy objective assigned to the ministry not only ensures quality health for all (Sustainable Development Goal 3), but also financial inclusion as the country races to achieve Malawi Vision 2063.

However, skin cancer is the leading cause of death in persons with albinism, contributing to about 80 percent of them.

This is the main health concern for persons with the rare condition.

Yet skin cancer is totally preventable and treatable if detected early.

Firstly, adequate knowledge among healthcare workers, persons with albinism, their families, guardians and communities in which they live can help roll back the neglected health crisis.

This includes accurate knowledge on skin care and cancer prevention.

This involves correct use of sunscreen lotion and protective gear—umbrellas, sunglasses, hats and long-sleeved wear.

The Ministry of Health is working with partners across the country to achieve this task and establish a clear referral pathway for clients with skin lesions likely to lead to skin cancer.

There are also on-going screening programmes for persons with low vision, including school-going children with albinism.

This is a key element in the attainment of a meaningful inclusive education.

During the screening campaigns, over 500 learners with albinism have received appropriate spectacles to improve their sight.

Besides, there are many efforts underway to ensure that appropriate sunscreen lotion is available throughout the supply chain—from procurers and suppliers at the Central Medical Stores to distributors at the district health offices until it reaches the end users in remote areas.

Success of these efforts requires a multi-sector approach.

Firstly, there is a need to develop a positive attitude towards albinism. This should start from the persons with albinism themselves, their families and communities where they live in.

The inclusive attitude must extend to health workers and other stakeholders because everyone has a crucial role to play. Together we can contribute to the quality health of persons with albinism  in the country.

Special recognition should go to Beyond Suncare and Standing Voice for the crucial roles they are playing in various districts to improve access to sunscreen and other basic services.

The two are among countless partners supporting districts to deliver necessary services to persons with albinism.

What is crucial, therefore, is that these partners must collaborate with the district health offices to ensure effective and equitable delivery of the services in the districts.

A Malawi where no person with albinism dies of skin cancer is possible.

According to Mahatma Gandhi, “It is health which is real wealth and not pieces of gold and silver”.

The country cannot talk about universal health coverage unless we work together to reduce the financial hardship and needless suffering vulnerable groups, including persons with albinism, face to access basic health services.