This June for World Sickle Cell Day –
I had the opportunity to present at a global sickle cell event about the use of hydroxyurea around the world.
One of the main points I shared was this:
Survival is not the finish line.
For decades, the first major hurdle in sickle cell has been helping children under 5 survive.
Especially in lower-resource countries with less access to basic interventions like newborn screening, penicillin, vaccinations, malaria prevention and regular follow-up.
We're beginning to clear that first hurdle in more places.
More children are being diagnosed earlier, protected from infections and surviving childhood.
But once more children survive, the question changes.
How do we help them grow into teenagers and adults without preventable sickle cell complications affecting their brains, lungs, kidneys and bones?
How do they stay well enough to thrive in education, work and independence?
This is where hydroxyurea becomes such an important conversation.
Hydroxyurea is not a painkiller.
It's not designed to immediately stop a crisis that's happening today.
You don't decline it just because you don't experience "that much" pain.
You don't stop it just because you feel well again.
Hydroxyurea is a long-term prevention strategy that reduces the chances of sickle cell damaging your body in the future.
How you feel right now is not the whole picture.
This is about protecting your future.
This is about reducing the risk of pain crises, acute chest syndrome, hospital admissions, transfusions and complications over time.
And this distinction is still not fully appreciated, even by some doctors.
Globally, hydroxyurea use is still far lower than it should be.
In some parts of sub-Saharan Africa, the main barriers are cost, supply, blood test access and the lack of specialist follow-up.
But even in higher-resource areas like the UK, Europe and the US, where hydroxyurea is available, many eligible people still aren't taking it.
Why?
And sometimes people simply hear that it "didn’t work" for someone else and decide not to try it for themselves.
But hydroxyurea doesn't need to work perfectly for every single person to still be one of the most important treatments we have.
Across populations, it reduces crises, complications, hospitalisations and quality of life.
That matters.
So if your haematology team has offered you hydroxyurea, don't dismiss it just because you feel okay today.
Ask questions.
Understand the benefits.
Understand the risks.
Understand the monitoring and safety precautions.
But most importantly think beyond today’s pain level.
Because good sickle cell care isn't just being pain free today.
It's about staying pain free and protecting your body before damage is done.
Stay Healthy,
Lewis
