The Haemophilia Foundation of Nigeria have lamented the difficulty with which they access life saving medicines donated to them by well meaning individuals due to NAFDAC bottlenecks.
Coordinator of the North Central Chapter of the Foundation, Dr. Uju Patrick stated this while commemorating the World Haemophilia Day in Abuja on Thursday.
TheFact Daily gathered that World Haemophilia Day is marked on the 17th of April every year to create awareness about the disease, von Willebrand disease and other inherited bleeding disorders.
Dr. Patrick emphasized that there was a need for more awareness about the plight of haemophilia patients:
“We need more awareness, we need more information, we need collaboration. Our factors are coming from abroad, free of charge. But we have a serious challenge.
“Getting those factors from the wharf, NAFDAC has been a thorn in our flesh. We charge NAFDAC, all our drugs should not be made to pass through the normal processes all drugs pass through. Because these drugs are coming in millions, hundreds of millions, free of charge, from donors. Sometimes they expire in the course of trying to clear them”, he said.
Dr. Patrick further lamented that, “all the requirements they ask us to get, we have always provided for them but unfortunately, you will always hear one bad news, or one new rule, or the other. And it’s worse once the director of NAFDAC is changed, or once those in that area are changed, it becomes a fresh problem for us”.
He also stated that a good number of haemophilics were undiagnosed and called on healthcare providers to request for a hemophilic factor assessment whenever there was abnormal bleeding.
He mentioned that there were just about 10,000 diagnosed cases, a whole lot remained undiagnosed.
“We (the Foundation) are creating awareness so that in all the hospitals, once you notice a child bleeding abnormally, it is important to recommend for that child to go for hemophilic assessment.
“Once this assessment is done and once it becomes a routine assessment for every bleeder in Nigeria, you will notice that many of the undiagnosed patients in Nigeria will be diagnosed”, he said.
He added that, “our intention is that one day federal government will see it as a more serious problem. Or a problem as serious as HIV, and as serious as tuberculosis, even though it’s not communicable but then, people are suffering from it, and they need support.
On his part, the Director of Clinical Services, National Hospital Abuja, Dr. Abbas Badamasi congratulated the Foundation on the occasion of its 20th anniversary and also the commemoration of the 2025 World Haemophilia Day.
“So I congratulate, especially the patients, for surviving this disease. And of course the health care workers who are going through the thick and thin to manage these patients.
“Agreed, it is not a transmissible disease, that means it’s not airborne. But at least it runs through families. So you cannot say if you have one patient, you have finished.
“If the patient has offspring, it’s likely that the offspring may catch the disease. Especially if you are fortunately for intermarried gender male. The more males are found in hemophilia.
Badamasi assured of the Hospital’s support, “So National Hospital is with you. And we will try and support in whatever way we can. If it means writing to the Ministry of Finance, or Customs or visit NAFDAC, to make sure that these drugs are shipped from wherever they are to National Hospital and all other parts of the country, we are willing to do that.
On her part, Consultant Haematologist and Haemophilia Treatment Center Director, National Hospital Abuja, Dr. Udo Christiana explained that Haemophilia was a protein deficiency and can be treated:
“Haemophilia can be treated in the sense that we say it’s a bleeding disorder. It’s a protein deficiency. The abnormality is in these proteins that produce the factor 8 and factor 9. So the treatment basically is to replace this protein, the protein factor that is deficient.
“If the person has hemophilia A, you will use factor 8 concentrates that is rich in factor 8 to treat the person and the bleeding will stop. If he has hemophilia B, which is factor 9 deficiency, you have the factor that contains factor 9 concentrates. It will be infused to the patient and then the bleeding stops”, she said.
Dr. Udo further explained that there were other non-factor concentrates that are also used for treatment.
“Both for hemophilia A and hemophilia B. There are other newer drugs also that are being used that have come recently and we give the patient maybe just once in a week, twice in a week as prevention even before the bleeding”, she said.
Dr. Udo however said the factors were very expensive. “The government of Nigeria is not providing these factors for us. We get this factor for the treatment of this patient from Donors, World Federation of Haemophilia, some other pharmaceutical company who supports the World Federation of Haemophilia.
“They donate these drugs for our patients. The drugs are quite very expensive. Many of our patients don’t afford or cannot even afford. That is why we are always advocating to our government to also look at these patients with inherited bleeding disorder, haemophilia”, she said.
18 year old Idris Bello recounted how he was diagnosed with Haemophilia. He had bled for six months after circumcision as a baby, forcing his parents to seek for help.
He informed that the Haemophilia Foundation had been of tremendous support, giving them factors free of charge. However, the government needs to come to their aid as the donors won’t be available forever.
Haemophilia is a rare, genetic blood disorder that happens when your blood doesn’t clot enough to make your bleeding slow down or stop. Haemophilia happens when you don’t have the normal amount of clotting factors. Clotting factors help blood clot. Healthcare providers treat Haemophilia by replacing missing clotting factors.
