Battling sickle cell: Experts reveal reality, call for support, awareness

Dr Agnes Jonathan, the Sickle Cell Programme Manager at Muhimbili University of Allied Sciences (Muhas), sheds light on the dire situation, revealing that under-five mortality stands at a concerning seven percent among sickle cell patients in the country.

As Tanzania grapples with these shocking numbers, Dr Agnes revealed an emerging ray of hope from the efforts of the Sickle Cell Programme, which aims to increase access to exchange blood transfusion, a more affordable alternative to bone marrow transplants—for those who cannot afford the curative programmes.

The urgency of the situation is underscored by the stark reality that safe blood availability in the country remains dismally low, meeting only half of the escalating patient needs.

Dr Collings Kanza, a clinical research fellow and a dedicated advocate for change, points out to The Citizen the unfortunate irony that sickle cell patients, who are among the most in need of blood transfusions, are often sidelined when it comes to prioritisation.

However, a beacon of optimism shines as the Programme, in conjunction with the upcoming Sickle Cell Awareness Month this year, takes action to tackle these challenges head-on.

On September 4 to 5, 2023 a transformative event is set to unfold at Muhas grounds—an impactful blood donation drive combined with educational initiatives aimed at disseminating vital information about this devastating disease. "This event isn't just about awareness, but about affecting real change," explained the esteemed Hematology and Blood Transfusion expert, Dr Agnes.

In addition to raising public consciousness about sickle cell disease, the programme is passionately advocating for the inclusion of sickle cell blood exchange transfusion in the national insurance fund.

“This critical step would be a lifeline for those unable to afford the costly treatments. The envisaged insurance coverage for exchange blood transfusion could offer a reprieve to countless families grappling with the financial burden of the disease,” she said.

The call for support extends beyond the borders of Tanzania. The French Embassy has joined the fight against sickle cell disease, aligning with the programme's mission to mitigate the disease's impact.

“Their involvement serves as a heartening example of global solidarity in addressing this pressing health issue. Through collective efforts, we hope that significant strides will be made in minimising the impact of the disease on the lives of Tanzanians,” said Ms Aisha Rifa, Project coordinator for sickle advanced therapy programme.

Notably, the program has already embarked on a pilot study that offers a glimmer of promise.

According to Dr Agnes, 15 sickle cell patients have undergone blood transfusions, and the initial results are encouraging. “Patients have exhibited improved progress, further cementing the potential of this approach as a feasible treatment avenue.”

As the Sickle Cell Awareness Month event draws closer, stakeholders are rallying to ensure its success. Experts from various medical disciplines are coming together to lend their voices to this noble cause.

"This is a collective responsibility," emphasizes Dr Emily Joseph, a pediatric hematologist based in Mwanza. "Sickle cell disease impacts not just the patients but their families and communities as well. It's high time we acknowledge its severity and work collaboratively to offer solutions."

Dr Agnes's sentiment resonates with the wider medical community, which acknowledges the need for multifaceted interventions. Beyond treatment, educational campaigns are vital in dispelling myths and misconceptions surrounding the disease.

Dr Mohammed Hamad, a renowned public health specialist in the isles, highlights the importance of community engagement: "Effective awareness campaigns can empower individuals with knowledge, encouraging timely medical intervention and destigmatizing the condition."

In a nation where sickle cell disease's grip is so relentless, the impending event holds immense promise. It serves as a clarion call to stakeholders, healthcare professionals, policymakers, and the public to unite against this formidable foe.

Through collaborative efforts, the hope is to alleviate the suffering of sickle cell patients, improve access to treatments, and ultimately change the trajectory of the disease in the country.

As the countdown to September 4 begins, the Muhas football ground is set to become a hub of compassion, awareness, and progress. The Sickle Cell Programme's ambitious initiatives, fueled by expert voices and unwavering dedication, stand as a testament to the power of collective action.

In the face of adversity, Tanzania's response is a resounding affirmation: the fight against sickle cell disease will be relentless until every child has the opportunity to live a healthy life.