Uganda must legislate for mandatory testing on sickle cell before couples can marry – Ministry of Health.

KAYUNGA, Uganda: The Sickle Cell disease (SCD) has continued to rise in Uganda with approximately 20,000 cases registered among new born children in the country every year, according to Uganda’s ministry of Health permanent secretary, Dr. Diana Atwine.

“It’s our mistake as parents that is causing our children to have pain”, Dr. Atwine

Sickle cell disease is a lifelong, inherited disorder affecting the red blood cells and according to the Ministry of Health, “it is a leading cause of childhood illness and death in Uganda”. The illness is characterized by lifelong anemia, bone crushing episodes that last for days or weeks, disability from brain strokes in childhood, and early childhood death from the infection.

While launching an initiative at the Kayunga regional referral hospital on Monday, Dr. Atwine called for mandatory premarital testing and counseling on would be parents as an initiative to reduce the number of SCD “warriors”, a term used to define people living with sickle cells.

The ” Integrating and Scaling up Sickle Cell Disease care in primary Health Services” program being rolled out by the Non Communicable Disease (NCD) unit of the ministry of health in Uganda is promoted with support from the Texas Children’s Global Hope, The Bailor College of Medicine Children’s Foundation -Uganda, Makerere University among others with funding from the Bristol Myers Squibb Foundation and Mulago National Referral Hospital.

The program aims at ensuring that every infant in Uganda is screened for SCD and those that have the disease, receive essential lifesaving care that includes among others the timely childhood immunization and the provision of Hydroxyurea – a drug that reduces sickling of blood cells to prevent complications of the disease.

Dr. Atwine addressing the press at Kayunga regional referal Hospital on Monday. PHOTO/ Stephen Okhutu

“It’s our mistake as parents that is causing our children to have pain”, Dr. Atwine noted advising that the country should adopt a policy of mandatory premarital screaming as a measure to discourage people with sickle cell traits from marrying each other.

She warned that if mandatory premarital testing is not encouraged, then Uganda is risking having the number of “worriors” increasing every year and that the cost of management the disease will be overwhelming.

Nakalembe Vicky, a resident of Kabimbiri in Mukono is a mother of sickle cell disease “warriors” who shared her story as a parent of two children struggling with SCD. After loosing her 19 year old son to SCD this September, Vicky advises parents to stop producing children who are going to suffer a lifelong pain saying that “All we need to do is to test before we commit ourselves into marriage”.

Nakalemba Vicky, who lost a son due to SCD because of the high cost managing the disease PHOTO/ Stephen Okhutu.

Jjuuko Charles is a resident of Kayunga town council and a journalist working with the New Vision newspaper. He is one of the parents who lost a son to the sickle cell disease. He narrated to the Scribe the challenges parents go through while looking after children suffering from the sickle cell disease saying that “It’s so challenging especially to families that are struggling financially since the cost of managing the disease is too high. The pain of seeing a child suffering with too much pain “when you are sure that the pain is a lifelong suffering you caused to your child because you refused to test” is deep hurting.

The move by the government of Uganda to roll out mass sensitization on the disease and to take SCD testing at the centre of care has been welcomed by caregivers and parents of children living with sickle cell in Kayunga as a measure that is going to release household pressure believed to be caused by lack of support at household levels.

Joyce Bagala, the woman MP in Mityana district, who is also a parent who lost a child due to SCD, on the same occasion called upon fellow legislators to pass a law creating mandatory premarital testing on sickle cell trait in Uganda as a measure to reduce the production of children born with the sickle cell disease.