Albinism: A Global Health and Social Challenge

Context

The World Health Organization (WHO) has included sunscreen in its Model List of Essential Medicines. This decision is considered a major relief, especially for people with albinism living in Africa and other sunny regions.

About Albinism

• Albinism is a genetic condition characterized by a deficiency of the pigment melanin in the body.
• Due to the lack of melanin, the skin, hair, and eyes of an affected person are very light in color.
• Globally, it is estimated to affect 1 in 20,000 people.
• It is a congenital condition and can occur in any gender, race, or region.

Types

• Oculocutaneous albinism (OCA): It affects the skin, hair, and eyes.
• Ocular albinism: It affects only the eyes.

Characteristics

• Very light skin and hair color
• Photophobia (sensitivity to light)
• Increased susceptibility to sunburn and skin damage from the sun
• Higher risk of skin cancer

Global Prevalence

• The average rate of albinism worldwide is 1 in 20,000 births.
• However, in sub-Saharan Africa, the rate ranges from 1 in 5,000 to 1 in 15,000 births.
• In Tanzania, the rate is even higher, at approximately 1 in 1,400 births.
• Due to the high levels of sunlight in Africa, up to 90% of people with this condition may develop skin cancer before the age of 30.
• In Africa, people with albinism face social discrimination and, in some cases, violence and even murder due to superstition.

Situation in India

• Precise data on albinism in India is not available, but experts estimate that approximately 1 to 2 lakh people are affected in the country.
• The prevalence rate is similar to the global average, which is about 1 in 17,000 to 20,000.
• The main challenges are social discrimination and lack of awareness.
• Easy access to sunscreen and eye protection through healthcare services remains a challenge.

WHO's Recent Initiative

• The WHO has reclassified sunscreen from a cosmetic product to an 'essential medicine'.
• This aims to protect people who are particularly vulnerable to sun exposure, especially those with albinism.
• Governments worldwide use the WHO's list to prioritize medicines at the national level.

Benefits of this Initiative

• People with albinism will have access to free or affordable sunscreen.
• The risk of skin cancer will decrease.
• Life expectancy will increase, and quality of life will improve.
• This decision will promote health equity.

Response in East Africa

• Albinism communities in Kenya, Uganda, and Tanzania have welcomed the WHO decision.
• Tanzania has called it a significant step towards health justice.
• Local organizations have termed it a 'life-changing decision' and urged their governments to include it in their national essential medicines lists. 

Challenges

• Ensuring the availability and distribution of sunscreen in rural areas of Africa and Asia
• Combating social discrimination and misconceptions
• Addressing the lack of awareness, which often leads to delays in seeking treatment and adopting preventive measures
• The difficulty for economically disadvantaged communities to afford regular sunscreen

Way Forward

• India and other countries should incorporate the WHO recommendation into their national policies
• Free distribution of sunscreen at primary healthcare centers
• Awareness campaigns on albinism to reduce social discrimination
• Dedicated programs for the early detection and treatment of skin cancer
• Facilitating global collaboration to make sunscreen production and distribution affordable and accessible worldwide