Sickle cell disease changes the shape of blood cells into crescents, These cells then stick together, causing blood clots, intense pain and anaemia, hindering blood flow. Sufferers experience severe painful episodes, which can require hospital admission. The drug Hydroxyurea can reduce the number of episodes, but the only cure is a bone marrow transplant. Life expectancy can be 20 to 30 years shorter than the general population.
About 5% of the global population carry the gene and some 300,000 babies are born with the disease each year. The majority with the disease in low-income countries will die before they are five. The condition mainly affects people of African or Caribbean heritage. In Kenya, where nearly 14,000 children are born with the condition every year.
The drug hydroxyurea is commonly used to prevent sickle-shaped blood cells from forming and is the most affordable option to manage the symptoms, although it does not work for everyone and the term ‘affordable’ is a stretch.
Manjusha Chatterjee, from NCD Alliance, said sickle cell and other non-communicable diseases are more than a health issue.
"They are a major human rights and equity issue, as they disproportionately burden the poorest and most marginalised populations. In countries everywhere, this includes ethnic minorities. Urgent steps need to be taken so that health systems are inclusive and no one is left behind,” she said. “Although millions of people around the world live with sickle cell disease, it is still considered a rare condition. Simply getting a correct diagnosis of a rare disease is difficult – on average, it takes seven years.”
Kenyan, Lea Kilenga, explains “My message to people with sickle cell is there’s no saviour coming. We’ve had 100-plus years to wait for them, they have not shown up to make significant change for us. So we must make this change for ourselves and others like us.”