On 3rd February 2020, the World Federation of Haemophillia put out a statement on the outbreak of the novel coronavirus1. At this stage, their thoughts, were that the worldwide risk of this new coronavirus remained low, even as the WHO issued a global state of emergency.
On 4th March 2020, exactly a month later, the WFH did an update to that Statement. Their main concern was “risk to blood, blood treatment products, and plasma derived products”
“Based on its relatively large size and structure, which includes a lipid envelope, the COVID-19 virus would be inactivated through solvent/detergent treatment and/or eliminated by nanofiltration,
both of which are part of the clotting factor concentrate manufacturing process (however, some products do not undergo nanofiltration),” said the WHF2.
By this stage, the WFH had also revised their position on the risk of regional spread of the virus, indicating that there may be “widespread transmission”.
One year later, the pandemic has ripped its way through global society with (at the time of writing) a coronavirus case load of over 132 million people and nearly 3 million deaths3. There have been and will be massive long-term repercussions economically and health wise for the global community. Not least of this, to our own Haemophilia community.
The question is: How does Covid-19 affect me, being a person with Haemophillia?
In April 2020, the WFH presented a Webinar on Bleeding Disorders and Covid-19.4 In this webinar, they pointed out that “the people at greatest risk for severe disease are those with comorbidities such as cardiovascular disease, hypertension, obesity, diabetes, HIV, and older age groups as well as those on steroids and immunosuppressants.
They clearly stated that “bleeding disorders are not comorbidities in severe COVID-19.”
There is no increased susceptibility to infection in immune-competent people with bleeding disorders.”
A paper published in July 2020 indicated that “its not fully clear how COVID-19 may affect patients with hereditary bleeding disorders. Anticoagulation in patients with Haemophilia is still debated. But they also added that “Sars-CoV-2 can cause some changes in coagulation processes in affected patients. They also suggested that Haemophilia seems to protect from the hypercoagulable state caused by COVID-19.”5
Along with the disease side of the pandemic came the community effects of the pandemic. Social isolation – imposed upon us to attempt to mitigate the risk of the pandemic to the healthcare systems, and an effort to save lives.
Social isolation for anyone, but specifically for a person with haemophilia is difficult.
There is reduced access to health care facilities and haemophilia treatment centres (HTC’s), postponement of elective surgeries, and negative impacts to clinical research programs.
In addition, the cancellation of many in person educational and research exchanges interrupts the knowledge flow of haemophilia care, including guidance on the management of complications from COVID‐196.
The global haemophilia community is dealing with new challenges to ensuring continued access to haemophilia treatments including maintenance of product supply chains, and the impact of reduced blood and plasma donations.
For people who do home treatment, it is recommended to have a 14-day supply of factor products available at all times, during any crisis.8
While isolating, remember to look after yourself. Exercise and diet are very important to keeping your body strong, fit and healthy; including helping reduce stress and anxiety.
A home exercise program of routine moderate intensity physical exercise will help with immune support.7
Eating a varied and balanced diet, avoiding saturated fats, excess sugars, and refined carbohydrates. Weekly vitamin D (D2 or D3) supplementation, in addition to its beneficial effects on bone mineral density, offers protection against acute respiratory infections, particularly among people who are deficient in vitamin D.7
Make an effort to remain in contact with friends and family. Use the modern-day technologies to your advantage – pick up the phone. Call a friend; have zoom tea times. Stay connected.
One of the most important things to remember is to continue your regular treatment plan as prescribed by your doctor or HTC. A person with Haemophilia should not delay treatment if bleeding occurs.
If there is a need to go to the HTC or the emergency room (ER) to treat a bleed, don’t hesitate to get treatment. Call them in advance. Let them know that you are a person with a bleeding disorder, and let them know you are coming in. This allows them to prepare beforehand. It also might turn out that they could, depending on your bleed, do a telehealth consultation instead. See if this is an option.
Currently, the global health care systems are working on getting everyone vaccinated against Covid-19.
According to the NHF (USA Hemophilia Federation), having a bleeding disorder is not a reason to avoid getting a vaccine.9
When going for the vaccination, there may be some screening questions: do you have a bleeding disorder; are you receiving monocolonal antibody treatments; and are you taking medications with one of the following ingredients (such as a stabliser used in many medications – PEG (polyethylene glycol))?
The WHF recommend that vaccinations are administered intramuscularly with the smallest gauge needle available; apply pressure for at least 10 minutes post-injections and check the injection site 2-4 hours later to see that there is no delayed haematoma. They also recommend that patients with moderate to severe Haemophilia do their vaccination after they have had a factor injection.10
Speak to your HTC or doctor before going for your vaccination. Don’t forget, if you are part of a clinical study, you should also report your vaccination to the study investigators.9
This pandemic is teaching us some valuable lessons:
- Health is important – physical and mental.
- Family, friends and community are important.
- People with rare diseases need to be extra vigilant during these times.
Remember to stay in close contact with your HTC; your doctor and maintain your treatment regime. Keep a diary of all your bleeds and infusions. This will allow you to keep track of what is happening while you are not seeing your doctor; and when you do, it will be an easy reference for your doctor or HTC to look at, without relying on memory.
During times when the healthcare system is strained to breaking point with other issues, people with rare diseases and bleeding disorders perhaps feel they are being left to fend for themselves.
Family, community, healthcare workers and patient associations – Go ahead and FEND.
People with Haemophilia are born warriors!
Written for you by:
The SAHF Editorial Team in conjunction with OCTAPHARMA.
- The WFH have a page dedicated to COVID-19 COMMUNICATIONS.
- The WFH held a webinar a year ago, discussing Covid-19 and how it is impacting the international bleeding disorders community.
- Practical recommendations from the WHF.
- Recommendations on vaccinations from WHF:
- https://news.wfh.org/wfh-statement-on-outbreak-of-novel-coronavirus-2019-ncov/ [6 April 2021]
- https://news.wfh.org/world-federation-of-hemophilia-statement-update-to-covid-19/ [6 April 2021]
- https://www.worldometers.info/coronavirus/ [6 April 2021]
- http://www1.wfh.org/publications/files/pdf-1752.pdf [6 April 2021]
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7364750/ [6 April 2021]
- https://onlinelibrary.wiley.com/doi/10.1111/hae.14191 [6 April 2021]
- https://www.tandfonline.com/doi/full/10.1080/17474086.2020.1818066 [6 April 2021]
- https://hemaware.org/mind-body/managing-bleeding-disorder-during-pandemic-answers-6-common-questions-about-covid-19 [6 April 2021]
- https://www.hemophilia.org/news/covid-19-vaccines-and-bleeding-disorders-frequently-asked-questions-faqs [6 April 2021]
- https://news.wfh.org/covid-19-vaccination-guidance-for-people-with-bleeding-disorders/ [6 April 2021]