By D'KRIZIA BARTLETT

What we call “rare” is often just what we refuse to acknowledge, fund, or prioritise.

In a country where sickle cell disease is anything but rare, silence remains the loudest response.

There is no national registry. No standardised protocols. No emergency guidelines.

Policies are non-existent. Screening is sporadic. Empathy is optional. And urgency? Invisible.

How many more hospital beds must become graves before the sirens of urgency finally sound?

For many politicians, health officials, and policymakers, it’s easy to look away when the pain isn’t personal.

Easy to dismiss the cries that echo from hospital beds you’ll never lie in.

Because they don’t carry the trait, they don’t carry the burden.

Because they don’t feel the pain, they feel no pressure to ease it.

Because it’s not their child. Not their sibling. Not the love of their life.

So they’re able to move on with their own.

Sickle cell isn’t personal to them, so it is not urgent.

And when the urgency becomes optional, our lives are reduced to statistics.

But ignorance doesn’t absolve responsibility.

It prolongs suffering and perpetuates deaths that never had to happen.

This is what remains when a system chooses comfort over conscience.

A reality buried in data but lived in flesh.

A war quietly waged within the body — unseen, but unrelenting.

Life’s sacred river, corrupted.

Your blood, the very thing designed to sustain you, turning against you.

Now filled with damaged, dying, red blood cells — sickled, sharp, and oxygen-deprived, yet determined to drag you on the battlefield of a war you never chose.

Still, you fight.

Every breath, a negotiation.

Every movement, a risk.

And in this war, pain is the only certainty.

But this pain?

It waits beneath the surface, like a quiet predator.

Some days it creeps.

Other days, it strikes like lightning: sudden, searing, cruel, and deadly.

We’ve grown used to the complications of this internal war,

Because sadly, there is no real help in sight:

no accessible cure,

limited treatment options,

and systems that respond far too late.

We already live with the daily burden of a body at war with itself.

Why must we also be at war with the very system meant to protect us?

But even worse than the physical pain?

The pain of being unseen.

The deepest wound sickle cell leaves isn’t always in the body, it’s in how the world chooses to treat those who carry it.

We suffer not only from a disease written into our genes,

but from a system that fails us at every corner.

We are failed at birth.

No mandated newborn screening.

Delayed diagnosis and intervention.

We’re left to suffer until crisis confirms what could’ve been known from day one.

Failed in the classroom.

Our fatigue mistaken for laziness,

Our layered clothing misread as defiance.

Our required accommodations seen as burdens.

Our absences dismissed as excuses.

We are often labeled as unmotivated, even when showing up is a triumph.

We sit through lessons while our bodies scream in silence — too afraid to ask for help, too tired to explain again.

We fall behind not from lack of intelligence, but from lack of support.

And instead of asking “What do you need?”, they ask “What’s your excuse this time?”

We are failed in our adolescence.

No lesson to caution against love’s genetic gamble.

Only silence. Deafening, generational silence.

Until two unsuspecting hearts creates life; a child who inherits more pain than promise.

What should have been prevention becomes neglect.

What could have been an informed choice, is now an unspoken crisis.

Failed in the ER.

Our pain is questioned.

Our voices ignored.

Our symptoms downplayed.

Our knowledge of our own bodies dismissed.

We scream in agony; they call it drug-seeking.

We cry for help; they call it exaggeration.

We are not met with care, but with doubt and bias cloaked in medical “expertise”.

We are failed at work.

Our condition is misunderstood, unsupported, and penalized.

Our crisis seen as inconvenience.

Our fatigue mistaken for poor work ethic.

Our medical absences, investigated.

We are passed over for promotions—not based on performance, but due to perceived fragility.

We are made to feel like liabilities instead of assets.

We are pressured to “push through” pain to prove our value.

And when we advocate for ourselves, we’re labeled difficult, dramatic, or unreliable.

And most heartbreakingly, failed by the very people we put in power.

Forgotten in national health agendas.

No registry to count us.

No specialised unit to care for us.

No studies to understand us.

No data to track us.

No policies to protect us.

No priority placed on whether we live — or how we die.

Until our cries are heard and our pain understood,

our sorrow remains invisible, and our deaths remain routine.

After all, the world only seems to remember this disease in mourning.

At graveside goodbyes, when someone they once knew becomes someone they used to know.

But eulogies are not enough.

Because once our pain becomes a memory, it becomes easier to forget,

especially for those comforted by burying our stories beside our bodies.

Content to lay this emerging epidemic to rest, until it claims someone they can’t ignore.

Here lies the truth, buried beneath sun, sand, sea, and silence:

We are not dying because we are sick.

We are dying because the system is.

So, tell me:

How many more lives must be lost to a healthcare system that reacts instead of prepares?

How many more must break carrying the weight of neglect before the system bears the burden too?

We don’t want pity.

We want policies that treat our lives as worthy of investment, because they are.

We do not want awareness without action.

We do not want acknowledgment only in death.

We do not want promises that expire with news cycles.

We can no longer remain silent while our healthcare system continues to fail us.

To our policymakers, health officials, and leaders—this is your call to action.

The time for reaction-only care is over.

The time to act is now.

What MUST be done:

1. Mandate newborn screening across all public and private institutions.

Early detection is not a luxury, it’s a right.

2. Create and maintain a National Sickle Cell Registry.

You cannot serve a population that you cannot count.

3. Establish a specialised Sickle Cell Unit.

Warriors deserve more than fragmented, inconsistent care.

4. Implement education and training programs across schools and healthcare settings.

Empathy should not be optional. Awareness must be institutional.

5. Invest in local research, data collection, and policy development.

We cannot depend on imported knowledge to solve local suffering.

6. Include sickle cell patients and advocates in decision-making spaces.

Nothing about us, without us.

This is not a wishlist.

It is a survival plan.

A plan that starts with recognising that sickle cell disease is not rare.

But the urgency to fight for those who live with it, is.

• World Sickle Cell Awareness Day was held on Thursday. D’Krizia Bartlett wrote this piece to mark the occasion.