With the coronavirus pandemic putting stress on the global healthcare system, patient advocacy groups for those living with bleeding disorders such as hemophilia or von Willebrand disease are keeping a close eye on the unfolding crisis. Just as they have on many other aspects of daily life, restrictions on travel and public gatherings are having a significant impact on the bleeding disorder community. Many local groups around the world have had to cancel or postpone fundraising and other events surrounding today’s World Hemophilia Day.
For example, the "Urban.Arts" event at Zurich main station, an arts event which would have drawn attention to World Hemophilia Day, had to be postponed to 1st September. "Due to the applicable regulations, we canceled all events in the near future," said Jörg Krucker, managing director of the Swiss Hemophilia Society SHG.
The current corona crisis presents the SHG with challenges. “Holding a meeting virtually is not an alternative for us because personal exchange among the participants is an important aspect of the event,” says Kruckner. In order to bridge the time of the lockdown, the SHG in cooperation with the Swiss Hemophilia Network SHN has created a fact sheet and uploaded it to their website. It specifically addresses questions from people with bleeding disorders. Jörg Kruckner: "We very much hope to be able to make up for at least some of the events and meetings in the second half of the year."
" We very much hope to be able to make up for at least some of the events and meetings in the second half of the year. "
Joerg Krucker, Managing Director, Swiss Hemophilia Society
In an open letter in March, Dr. Leo Valentino, President and CEO of the US National Hemophilia Foundation (NHF) stated that people with inherited bleeding disorders are generally “neither immune compromised nor at greater risk for viral infections such as COVID-19.” However, those living with both hemophilia and inhibitors “have an altered immune system and greater care should be taken to avoid exposures to others who are sick, especially those with fever and/or a cough,” Valentino wrote.
“Those who take particular drugs (e.g. steroids) that depress the immune system are at heightened risk for infections including viral infections,” Valentino added. “These individuals should take heightened precautions to keep space between them and others, avoid crowds as much as possible, and wash hands frequently and thoroughly – especially after going out, and avoid contact with others who are sick to avoid exposure.”
The World Federation of Hemophilia has also posted a statement to its site. The Coalition for Hemophilia B shared information relevant to patients on its Facebook page and on youtube.
