17 April 2020
Today is World Haemophilia Day. The day, which has been marked since 1989, raises awareness and understanding of haemophilia and other bleeding disorders. The date was chosen in honour of Frank Schnabel, founder of the World Federation of Haemophilia, who was born on this day.
Muriel Cozier
The US Centre for Disease Control and Prevention says that; ‘Haemophilia is usually an inherited bleeding disorder in which the blood does not clot properly.’ People with haemophilia have low levels of proteins called clotting factors that help stop bleeding. The lower the amount of clotting factor, the more likely it is that bleeding will occur from injury, for example, which can lead to serious health problems.
A paper published in the journal Haemophilia highlights that over that past few decades, blood-borne viruses have impacted haemophilia patients that have been treated with clotting factors derived from human plasma. In the past, these have included HIV and hepatitis C.
But as the paper points out, while viruses can have a devastating impact on those with haemophilia, they also play a role in treating the condition, as demonstrated by the success of gene therapy clinical trials.
The emergence of new infectious agents remains a constant concern for haemophiliacs. For this reason, the last few decades have been devoted to improving the safety of clotting factor concentrates derived from human plasma, the paper’s authors say.
Of course, the new infectious agent causing the widest concern today is Covid-19, and the paper’s authors have examined the potential effects of the current pandemic on haemophiliacs.
It is impossible to know if the factor deficiency that those with haemophilia contend with could influence the manifestation of the infection, its natural course and outcomes, they state. ‘It seems clear, however, that the current pandemic will have definite consequences […] on the management of haemophilia worldwide. In this context, it seems appropriate to try to identify these likely consequences in order to best manage the current challenges and anticipate major difficulties in the longer term’.
The paper highlights a number of major issues, such as the delivery of therapies through pharmacies, hospital and home delivery programmes, which could be impacted by the pandemic. And while production of recombinant DNA replacement products is not expected to be affected, there could be a major challenge if an insufficient workforce is available to continue production due to illness.
Plasma-derived clotting factors could be impacted if plasma donations are reduced due to a reduction in the numbers donating. Other factors such as access to treatment centres and medical follow-up are among the issues of concern. In addition, many clinical research programmes and educational activities will or have already been halted. The authors also highlight the economic impact of the virus, not just on the global economy, but on those who have haemophilia.
The authors stress that while not wanting to be pessimistic, they want to be realistic. ‘Our bleeding disorders global community has experienced more than one crisis. This one is as different as it is unexpected. Together, we can face it and learn the necessary lessons from it,’ the authors conclude.
Haemophilia DOI:10.1111/hae.14001
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