Hemophilia is a rare genetic bleeding disorder that causes blood to take a long time to clot because of a deficiency in one of several blood clotting factors.

People with hemophilia are at risk of excessive and recurrent bleeding from modest injuries, which have the potential to be life threatening. 

Speaking about the disorder, Dr Painstil said many people, including health workers did not have adequate knowledge on hemophilia, a situation she said, ought to be addressed in order to provide good care support systems to patients with the condition.

She spoke via video conference at a Pfizer organised media roundtable on Thursday (April 13, 2023) as part of the commemoration of this year's World Hemophilia Day, which will be held on April 17.

Dr Paintsil said, “We need good medical intervention for hemophilia.”

Hemophilia

According to the World Federation of Hemophilia (WFH), an international not-for-profit organisation, more than 38,000 people worldwide were living with hemophilia B in 2021.

WFH works closely in partnership with hemophilia treatment centers (HTCs) in 29 African countries to share knowledge and build global awareness through information exchange, education, and training. 

Pfizer, which is a partner of the World Federation of Hemophilia, organised the media briefing to create more awareness on the condition, while driving home the need for innovation in access to hemophilia treatments.

It is the goal Pfizer to make sure patients living with hemophilia are seen, heard, and never forgotten as it continues to work tirelessly to find breakthrough solutions and therapeutic options to change their lives was reiterated at the media roundtable.

Care support

Dr. Painstil who is also a Senior Specialist Paediatrician working at the Komfo Anokye Teaching Hospital (KATH) in Kumasi, expressed the worry that there was little commitment from the government in terms of providing the needed logistical support for hemophilia care in the country.

“The burden people living with hemophilia B face is significant, with many receiving routine infusions or injections which can interfere with their ability to take part in day-to-day activities that many take for granted,” said. 

She explained that it has always been the World Hemophilia Federation that had been providing support for people living with hemophilia through their provision of drugs and diagnostic equipment.

For Dr Painstil, there was the need to provide health facilities with adequate drugs and diagnostic equipment to enable them to provide comprehensive care support for hemophilia patients.

Currently, she noted, only the Teaching Hospitals as well as some selected regional hospitals provide care support for hemophilia patients in the country.

She explained that due to lack of resources, including logistical and human resources at the district health facilities, people with the condition could not access care from such places and as such, had to travel to the Teaching or Regional hospitals in order to be seen.

Dr Painstil also expressed the concern that due to poverty, many of the patients suffering from hemophilia were unable to access health care.

In addition, she noted, some socio-cultural practices also prevented people suffering from the condition from seeking early medical intervention. 

According to her, some people with the condition blame it on witchcraft or curses, hence seeking care from spiritual leaders instead of going to the hospitals for proper diagnosis and care.

She said currently, 309 patients had been registered by the Ghana Hemophilia Society, stressing that there were about 1500 cases yet to be diagnosed.

Dr Painstil said bleeding disorders could easily lead to death, hence their care culture ought to be prioritised.

Pfizer's advocacy  

The Pfizer Medical Director for Sub-Saharan Africa, Kodjo Soroh, for his part said, “Pfizer’s efforts at advancing treatment for hemophilia and bridge gaps in access to care resonates with this year’s theme of World Hemophilia Day’s (WHD) Access For All: Prevention of Bleeds.”

He said Pfizer’s commitment to equity and continued investment in hemophilia was evident in its more than 30 years of experience in developing therapies for hematological disorders as it has a deep understanding of the significant challenges that people living with hemophilia continually face.

He pledged the commitment of Pfizer to continue to raise awareness on the condition, saying “We will continue to amplify and celebrate the work of the global hemophilia community as we create awareness on the need for innovation in access to hemophilia treatments.”

For his part, Professor Akanmu Sulaimon, a Professor of Hematology and Blood Transfusion of the University of Lagos, said people with severe hemophilia "often bleed spontaneously into their muscles or joints, or rarely into other critical closed spaces such as the intracranial space, where bleeding can be fatal."