I could tell you that close to 300,000 children are born with Sickle Cell annually in sub-saharan Africa.
More importantly is that without treatment, up to 80% of these children don't reach their fifth birthday.
Sickle Cell is the most common hereditary blood disorder.
It is a genetic disease that changes the shape of normal round red blood cells to sickle shaped red cells. These sickle shaped red blood cells have tendency to clump together causing blockages in blood vessels. This leads to a cocktail of complications. Chronic anaemia, chronic excruciating pain, progressive organ failure ( heart, kidneys, liver , brain), impaired growth and intellectual development. That's the science.
Sickle Cell has no known cure.
Gene therapy, stem cell transplantation are some attempts at a cure. However the overall cost i.e. (financial, complications and time of recovery) is still too great.
Even though Sickle Cell is found in middle east, Asia, south America and Europe and America. This is largely an African problem.
Most people in sub-Sahara Africa who have sickle cell have no access to early and continuous sickle cell care of acceptable quality. They live with chronic excruciating pain, can't maintain jobs or an income and spend most of their time in hospitals treating complications they can’t afford.
So why do you need to care?
1. Sickle Cell is 100+ year old disease
Research shows the Sickle Cell gene was discovered 7000+ years ago.
In a boy who was found to be resistant to Malaria. 7000 years means it precedes most of the big diseases today i.e. Cancer, Diabetes, TB, HIV etc. that is plaguing Africa.
It also came before tropical medicine and colonial medicine.
Which was the beginning of what we know as global health now. This type of medicine was practised in the colonies during 'scramble for Africa' and other parts.
It was medicine for the soldiers whose bodies succumbed to the local tropical diseases i.e malaria. They developed medicine from local herbs. Researched it in Europe and exported it back to Africa to tackle the likes of Malaria, sleeping sickness, cholera etc.
There has been extensive advancement of global health and most auspiciously Malaria, the cousin of sickle cell, that attracts large budgets and attention. It begs us to wonder., Why is progress on Sickle Cell still in its infancy?
2. Inequalities
Sickle Cell is plagued by racial inequality. It is still largely defined in ethnic and racial lines.
A disease similar in its genetic nature but only affecting Caucasians is cystic fibrosis. We see greater strides made in terms of research, funding and medicines in this disease compared to sickle cell.
Furthermore, due to the make-up of most decision tables globally, and their influences on local policies, sickle cell has been left behind. If a condition does not directly affect a predominantly powerful few, then it will stand at the back of the line.
3. No Policy on Sickle Cell
Show me a country that has a sickle cell policy, I'll show you what priority looks like.
I am yet to find a country with a national sickle cell policy. Even in sub-Sahara Africa where the biggest burden exists. Also, show me one that doesn't have a malaria policy.
4. Stigma
Sickle cell is still seen as a malady and witchcraft in local African communities.
In Cameroon, in extreme cases children are neglected or killed if they were born with Sickle Cell. There's a bill in the making in Nigeria that seeks to make genotype test compulsory to prevent couples from getting married if they carry the sickle cell traits. Which raises a moral and ethical dilemma.
Patients are often seen as lazy and drug seekers in hospitals when they seek care. This image of sickle cell enforces stigma and shapes the the way a patient harnesses their fullest potential.
5. Suffering can be avoidable
All this suffering can be avoided by low cost solutions.
It requires global and national governments to make policies a priority. Policies that come with budgets to e nsure populations are sensitised, health systems are strengthened detect sickle cell early and patients are linked to care to prevent complications.
Access to care has been show to reduce suffering and unnecessary premature deaths. This allows patients to live a full life.
How can you help?
- Share this article (add socials)
- Support a local Sickle Cell organization (donation)
- Support a patient, if you know one.
During COVID-19 pandemic access to care for sickle cell was halted due to clinic closure and disruption in availability of essential meds and services. Furthermore, social support systems like support groups were discontinued due to covid lock downs and covid restrictions. The economic hardship due to loss of income and increased household expenditures during covid, compounded the hardship on these families and community. This saw a rise in patients defaulting and subsequent mental health issues. Which lead to increased morbidities, reduced quality of life and premature mortalities.
The Sickle Cell Daycare Project creates and sustains monthly high-trust, safe spaces that brings patients and providers together to provide ; social support, social and economic empowerment and accountability.
Every month during the monthly Sickle Cell clinic, patients will have a space and sessions for :-
- social and mental health support
- leadership ,
- income generation and management skills.
This space will also allow patients to interact with care providers. The Sickle Cell Daycare project will build back better the social structures of the sickle cell groups, the care community and strengthen health systems that were dismantled during COVID-19.
With consistency and attendance of patients, we create demand to strengthen and build resilient health and social systems for Sickle Cell.
