By Ben Musanje
The Pharmaceutical Society of Uganda (PSU) has intensified its call for government to adopt policies that make sickle cell treatment affordable and accessible to all patients, warning that thousands of Ugandan children continue to die every year from a disease that can be effectively managed with timely diagnosis and appropriate medication.
The appeal was made during the official launch of the PSU Sickle Cell Run 2026 at Pharmacy House in Kyambogo, where pharmacists, government officials, health experts and sickle cell advocates rallied public support for increased investment in screening, treatment and research.
Speaking at the launch, Dr. Nuru Mugide, the Vice President of the Pharmaceutical Society of Uganda, said making essential medicines available and affordable remains one of the most effective strategies for reducing the burden of sickle cell disease in Uganda.
“As pharmacists, we believe no patient should die simply because they cannot afford medicine,” Dr. Mugide said.
She noted that this year’s charity run, scheduled for September 20, 2026, under the theme “Run for Life,” will start from Pharmacy House in Kyambogo and aims not only to raise awareness about sickle cell disease but also mobilize resources to purchase Hydroxyurea, the internationally recommended medicine that significantly reduces pain crises and improves the quality of life of patients.
According to Dr. Mugide, sickle cell disease is an inherited blood disorder in which red blood cells become sickle-shaped instead of round and flexible, causing blocked blood vessels, chronic pain, anaemia, repeated infections and damage to vital organs.
She said patients often experience severe pain crises, delayed growth, swelling of the hands and feet, frequent hospital admissions and lifelong complications that affect education, employment and overall quality of life.
Uganda remains one of the countries with the highest sickle cell burden in Africa.
Dr. Mugide said approximately 20,000 babies are born with sickle cell disease every year, while an estimated 14 percent of Ugandans carry the sickle cell trait, placing thousands of children at risk of inheriting the condition.
She added that between 6,000 and 9,000 Ugandan children die annually from sickle cell-related complications.
Globally, she noted, between 50 and 80 percent of children born with sickle cell disease in Africa die before reaching their fifth birthday if they do not receive proper medical care.
“Behind every statistic is a child, a parent and a future cut short,” he said.
Beyond the suffering endured by patients, Dr. Mugide said the disease places an enormous emotional and financial burden on families.
Parents, she explained, constantly worry about the next pain crisis while struggling with expensive hospital bills, repeated admissions and the high cost of medicines.
She urged Ugandans to know their genotype before marriage or starting families, saying premarital and antenatal screening, coupled with genetic counselling, remain among the most effective ways of preventing the disease.
Dr. Mugide also highlighted the important role pharmacists play in sickle cell care through counselling patients on adherence to Hydroxyurea and folic acid, promoting genotype testing, ensuring medicines are used safely and advocating policies that improve access to treatment.
She commended the Ministry of Health for integrating sickle cell screening into maternal and child health services and including the disease in Uganda’s non-communicable disease strategy, but called for faster nationwide newborn screening, subsidized Hydroxyurea and inclusion of comprehensive sickle cell care under government-funded essential medicines.
The launch also featured remarks from PSU Secretary Dr. Stephen Lutoti, who described sickle cell disease as a silent killer that continues to claim many lives.
“Disease kills, sickle cell disease kills, and therefore we do not want any life to be lost because of sickle cell disease,” Dr. Lutoti said.
He said the pharmaceutical fraternity resolved to organise the annual run because it believes collective action can save lives through awareness, prevention and improved access to treatment.
Meanwhile, the National Medical Stores (NMS) announced that public health facilities treating sickle cell patients will begin receiving dedicated sickle cell medicine kits during the 2026/2027 financial year.
Speaking during the launch, Dr. Doreen Basangwa, a Senior Pharmacist at NMS, said the kits will be distributed free of charge to all eligible government health facilities that report the number of sickle cell patients they manage.
The kits will mainly contain Hydroxyurea and Penicillin V, ensuring that patients accessing care through public health facilities receive essential medicines without affecting facility credit allocations.
“As long as facilities have sickle cell patients and report these numbers to NMS, they will receive the sickle cell kits during routine medicine deliveries,” Dr. Basangwa said.
The strongest appeal of the day came from Dr. Hope Fortunate Achiro, who emotionally recounted losing both her children to sickle cell disease despite spending nearly a year in India pursuing bone marrow transplants.
She said both children suffered repeated pain crises, blood transfusions, oxygen therapy and prolonged hospital admissions before the family raised more than Shs800 million through fundraising, government support, personal savings and the sale of family property to finance treatment abroad.
Despite the enormous financial and emotional sacrifice, both children died in intensive care just two months apart.
“The biggest loss is living without my children,” Dr. Achiro said.
She said she now speaks publicly about her experience to encourage couples to know their sickle cell status before marriage and make informed decisions about having children.
“I don’t want another family to go through what I went through,” she said.
As the September charity run approaches, PSU called upon government, development partners, corporate organizations, the media and the public to support the campaign, saying every participant will contribute towards purchasing life-saving medicines for children who cannot afford treatment.
The society maintains that while sickle cell disease cannot yet be cured in most patients, early screening, public awareness, affordable medicines and sustained government investment can significantly reduce deaths and improve the quality of life of thousands of Ugandans living with the condition.
