By Gore Ruvimbo
In the heart of Uganda, a silent crisis unfolds, echoing the desperate cries of those battling sickle cell disease. While the world spins forward, these warriors are forced to stand still, trapped in the unyielding grip of soaring medication costs.
Even after a glimmer of hope in the form of a government-negotiated 60% price reduction with drug manufacturers in July 2023, the battle for survival rages on.
In Uganda, there exists an unsettling statistic – at least 15,000 babies are born with sickle cell disease every year. These numbers transcend mere figures; they are lives ensnared by the cruel clutches of a genetic anomaly.
Yet, these lives are further burdened by an unforgiving truth: the medication that can ease their suffering is often out of reach. Stacked against an average Ugandan income of 600,000 Ugandan Shillings per month, the cost of this medication remains an insurmountable obstacle.
For those living in the outskirts of this vast nation, the journey to access medication is not just a quest for relief but a trek filled with financial and logistical hardships. Medication hubs are predominantly found in urban centers, demanding an added financial burden on those in desperate need.
“Government facilities around them do not have the medication because of the price as well,” laments Ruth Edith Ikilai, a warrior in this relentless battle.
However, speaking to Doctor Sara Lucas, a Senior Systematic Reviewer at HEOR Limited, she explained factors leading to the high cost of sickle cell medication.
She said the process of coming up with the drug and its approval is expensive on its own. She further explained that it should be pegged on a price that matches the quality of life where it’s produced.
“It has to meet a certain threshold; if it works out to be more expensive for the quality of life, it will be dodged,” Doctor Sarah explained.
She also said that the ten years required for a drug to be approved further contributes to the high pricing of medication.
In addition, darkness of misinformation clouds the path to relief. Even within the walls of medical facilities, the knowledge gap is palpable. Incorrect first aid and treatment become the unintended consequences, amplifying the suffering of these brave souls.
In a heart-wrenching twist, many parents find themselves at a crossroads. Constrained by meager incomes, they are left with no choice but to wait, biding their time until the inevitable day of reckoning arrives.
“Within no time, the immunity drops, and the warrior has lost a battle,” said Ruth.
To worsen the situation, there are no working policies to support the warriors as compared to diseases like HIV and diabetes. According to Musiimenta Euniky, the Community Engagement Officer with Uganda Sickle Cell Rescue Foundation.
“All we have is a sickle cell clinic, and we lack medication; in simple terms, there are no functional policies to help the patients,” she explained.
Uganda’s sickle cell warriors stand united in their plea for change. They cry out for a future where the price of hope is not beyond reach.
As the nation strives for progress, it’s time to ensure that every life, regardless of their genetic fate, can access the medication they need to thrive.
The battle against sickle cell disease rages on, but with concerted efforts, we can tip the scales toward hope and affordability.