Legislators have passed a motion urging government to develop a comprehensive policy on the haemophilia disorder.
MPs supported the motion moved by Hon. Joseph Ssewungu (Kalungu West) and seconded by Hon. Margaret Rwabushaija (Workers) during the plenary sitting on Tuesday 16th May 2017.
Ssewungu said that the motion was intent on making sure that government recognises the prevalence of the condition amongst Ugandans and provide cheaper diagnosis and treatment of the condition.
Haemophilia is a disorder that slows the blood clotting process, which is needed to stop bleeding, leading to people suffering from it to bleed longer following an injury.
“I learnt about the condition when I found that my son was suffering from it and to my dismay, we failed to find proper diagnosis at Mulago National Referral Hospital because the machine did not have the necessary reagents,” Ssewungu said.
He added that the cheapest diagnosis from a private hospital in Kampala costs about US$ 200.
Ssewungu said, “I discovered that over 60 children suffer from the rare condition, which can be fatal; we need the Ministry of Health to exercise due diligence on the matter.”
Hon. Rwabushaija noted that a woman with this condition risks dying while giving birth and added that there are increased chances of catching infections due to constant blood transfusion to restore blood in the event of an injury.
The Minister of State for Primary Health Care, Hon. Dr. Joyce Moriku thanked the MPs for spearheading the cause accepting that the condition exists in the country.
“The Ministry of Health has a policy which encompasses all these rare genetic disorders; however I agree that we need something more comprehensive to deal with the haemophilia disorder,” Dr. Moriku said.
The Minister of State for Health (General Duties), Sarah Opendi however said that the population with the condition is estimated at 0.01%.
“We can test for haemophilia at Mulago National Referral Hospital; we cannot have a single policy for the disease but rather something comprehensive,” Opendi said.
The Speaker to Parliament, Rt. Hon. Rebecca Kadaga, said that, “Even if they are 0.01% suffering from the condition they still exist and need to be managed; these people need awareness and advocacy; something needs to be done for them regardless of the numbers.”