Irish Haemophilia Society E-zine: March 27, 2020

Irish Haemophilia Society eZine: March 27, 2020
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An Update from I.H.S. CEO
March 27, 2020

Our work and home environments have been altered and impacted very significantly by the SARS-CoV-2, the Coronavirus responsible for the Covid-19 pandemic.

At the time of writing (March 27th), we had 1,819 cases of Covid-19 in the country resulting in 19 deaths. While this is a grim statistic, the figures are not as starkly negative as projected on St Patrick’s Day when we were projected to have 15,000 cases by the end of March. We may be only at the beginning of a surge of cases but even that delay gives the health service time to prepare more fully for a large number of anticipated cases.

Hospital bed capacity has been increased. Hospital wards are being converted into Covid-19 wards. The agreement with private hospitals will add 2000 beds to the system along with much needed intensive care unit beds and beds where people can be ventilated if required. The Government, the health service and the entire population have collectively met this challenge so far. Drastic steps have been taken in temporarily closing down many businesses and requiring many people to work from home. Schools and colleges are closed. All unnecessary travel has stopped. This is all welcome.

We need to flatten the curve of infection. If we have the same number of people infected in the country but spread over a four month, rather than a four-week period, the health care system should cope. We should have enough intensive care unit beds, enough ventilators and enough proper personal protective equipment to keep our healthcare staff safe as they minister to those with Covid-19.

The new virus is called SARS-Cov-2. SARS stands for Severe Acute Respiratory Syndrome. There was an outbreak of SARS in 2003. This new virus is one of a class of viruses called Coronaviruses. It is called SARS-CoV-2. It causes severe respiratory disease and is transmitted by droplets or contact. The public health measures which include social distancing, proper cough etiquette and self-isolation where warranted are now well known and are being updated frequently by the Department of Health.

I do not need to repeat them in this article. I want to provide some context from the Society for people with haemophilia, von Willebrand’s or other inherited bleeding disorders.

Coronavirus and Haemophilia

There is no evidence to suggest that people with haemophilia are at any higher risk of Covid-19 infection than the general public. If a person with coronavirus is diagnosed with coronavirus, there is nothing to suggest that it will be any more severe than if they did not have haemophilia. However, your haemophilia may impact how your coronavirus needs to be treated. If you have been diagnosed with Covid-19 and you are being treated by a doctor or hospital outside your haemophilia centre, please ask them to contact your haemophilia treating doctor

Safety of Treatment Products

The standard treatments for people with Haemophilia A are extended half-life recombinant factor concentrates or Emicizumab (Hemlibra). The standard treatments for people with Haemophilia B are extended half-life recombinant factor concentrates. None of these products contain human blood or plasma components and therefore they cannot transmit any potentially blood borne viruses.
The standard treatments for von Willebrand’s or for some of the rare bleeding disorders are plasma derived factor concentrates. The manufacture of all each these products contain viral inactivation and elimination procedures which are sufficient to very effectively destroy lipid enveloped viruses such as Coronavirus.

It is worth remembering that, with the two previous Coronavirus outbreaks (SARS and MERS), there was no evidence of, or no reports of, infection with either of these Coronaviruses through plasma derived factor concentrates.

There is no safety concern in relation to coronavirus and plasma derived factor concentrates.

Supply of Treatment Products

We are fortunate that we have in place a very efficient home delivery system for treatment products for those on prophylaxis or home treatment. In an earlier post on our website from the National Coagulation Centre (NCC), it was confirmed that from mid-March, the next two monthly deliveries of factor for home treatment would each deliver a five-week supply. This will provide individuals with two weeks of additional stock. The supply situation will be kept under constant review.

We are not aware of any current threat to the supply chain of treatment products globally. Due to the earlier potential supply risk caused by Brexit, we had increased our stock of factor concentrates in the country and we now have a national supply of four months stock.

Attendance at hospitals and treatment centres

We will be posting updated information on our website as often as it is made available on any changes to in-patient or walk in services for people with Haemophilia, von Willebrand’s or rare bleeding disorders. Services at Children’s Hospital Ireland in Crumlin are continuing. Many outpatient clinics are now virtual and being conducted by telephone. Parents are asked to contact the hospital prior to attending for an emergency requiring treatment for their child but they should continue to attend in an emergency.

Many of the outpatient appointments at the NCC are now being conducted by telephone consultation. Any adult who needs to attend due to a bleeding episode should contact the service by phone prior to attending. Currently, they will be seen in the National Coagulation Centre on the 3rd floor at St. James’s Hospital and not in the H and H ward which is now being used to treat people with Covid-19. We have not been notified of any change in procedures by Cork or Galway University hospitals. Updated information has been posted on our website on emergency dental services.

For up to date information on inpatient and outpatient services, please refer to our website. We will place updated information on our website as soon as it is received. The information will also be sent out by e mail to any member for whom we have an e-mail address and, in addition to this newsletter and the website, we will be sending out an electronic newsletter (E-Zine) weekly.

We would encourage all members to provide us with your e- mail address if you wish to receive these e-mail notifications. You can send your e-mail address to Barry Healy: [email protected] (mailto:[email protected])

Reducing your risk of transmission and staying safe

Currently, there are no known elevated risk factors to transmission of CoV-19, or an increased predisposition to the severity of the disease for people with haemophilia or inherited bleeding disorders. There is no evidence to suggest that people with inherited haemophilia who have inhibitors are at any higher risk from Covid-19.

However, there are people in our community who are immune compromised where their ability to combat an infection may be compromised. There are also people in our community over the age 0f 70. All of these individuals should take particular care to comply with all the public health advice. Maintain social distancing and stay away from any person who is showing symptoms. Practice good hand hygiene. Work from home if possible. Avoid all unnecessary travel. There is also some information that people with high blood pressure or diabetes may have additional problems if they develop Covid-19. If you have high blood pressure or diabetes, please make sure they are under control. Take your prescribed medications.

Please keep up to date with the precautions being proposed and get your information from the HSE, mainstream media or other reliable sources such as your treatment centre, GP or the Society. Do not pay attention to spurious information circulating on some platforms such as WhatsApp.

Services and Support from the Society

The Society staff are all working from home at present. All staff have access to their office files, and we have the ability to carry out most of the routine work. We are unable to schedule visits to members at home or in hospital at present, but we will be carrying out an enhanced service of staying in touch with members by phone. In the past 10 days, we have been in contact with a large number of members.
If you wish to contact the Society staff, call the office as normal. Your call will be automatically redirected to a member of staff. We will stay in touch. Please do contact us if you have a concern or question, or if you just want to chat.

This will be a challenging time for all of us. It is worth reflecting that this community has dealt with some unprecedented challenges in the past with issues such as HIV and Hepatitis C. We have overcome these challenges. We have prevailed. We have emerged as a stronger and more united community. Let us show the same resolve on this occasion where the entire country and indeed the entire world are being challenged. We will prevail again.

I think this country will emerge from this dark time stronger as a society, if not stronger as an economy. Economics is, and must, take second place to the welfare of all the people of the country. When this crisis ends - and it will end - we will have a deeper appreciation for many parts of our normal life which have been put on hold: shaking hands, meeting with friends, visiting family, going out for a meal or to the cinema, pub or theatre, interacting at work with colleagues. In the meantime, we must work together as a community to stay safe and stay connected.

Brian O’Mahony
Chief Executive
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Update on Children's Health Ireland, Crumlin
March 27, 2020

In the midst of the current Coronavirus pandemic, it is worth re-stating that the haemophilia and bleeding disorders service at CHI, Crumlin remains operational.
* Out patient clinics are virtual where possible and being conducted by telephone
* For new patients, where blood tests would be required, these out patient visits are being rescheduled
* Parents may still bring children in if there is an emergency which requires them to be seen in the hospital but please contact the hospital first before travelling there
* The contact telephone numbers for the haemophilia service remain the same during the day
* Outside normal working hours, contact the hospital and ask to speak to the Haematology Registrar on call

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Important Message from the NCC Regarding Home Delivery of Treatment from TCP

In relation to deliveries from TCP to people with bleeding disorders who are on home treatment:

From the week beginning the 16th of March, your next two scheduled deliveries from TCP will have 5 weeks supply instead of 4 weeks supply.

This means that after the two deliveries you will have two weeks extra treatment at your home.

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Events Update

Hardly a surprise give the current situation we find ourselves in but so far we've had to postpone the following events:

Von Willebrand’s Information Day

Date: Saturday, April 18th
Venue: Castleknock Hotel, Dublin

FYI: This event has been re-scheduled for August 29th.

Young Adult Conference 2020

Dates: Friday, April 24th to Sunday 26th
Venue: Radisson Blu Hotel, Athlone

FYI: This event has been postponed until further notice and will be re-scheduled for later in the year.

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: Hodson Bay Hotel, Athlone, Co. Westmeath

FYI: This event has been postponed and will be held in 2021 instead.

Mother & Daughter(s) Overnight

Date: Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

This event has unfortunately been cancelled.

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Hyde Square Apartments

Just to remind you all, that the Hyde Square apartments will continue to be available for members and bookings will be taken as normal.


▪ People with haemophilia or related bleeding disorders from outside of Dublin, when attending St. James’s Hospital or Our Lady’s Children’s Hospital, Crumlin for treatment, for a hospital appointment or for a review clinic.

▪ An immediate family member, a spouse, a partner and/or child of the person with haemophilia or related bleeding disorder from outside Dublin, when attending St. James’s Hospital or Our Lady’s Children’s Hospital, Crumlin for treatment, for a hospital appointment or for a review clinic, or while a family member is an in-patient.

To make a booking, please contact Julia on 01 657 9900*.

For more info, please click here ([link removed]) .

* A nominal fee of €10.00 per booking, per night will be levied to offset the cost of cleaning and routine maintenance.



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VHI Women's Mini Marathon Postponed

This year’s VHI Women’s Mini Marathon has been postponed amid the “growing threat” of the coronavirus outbreak.

The 10km run in Dublin’s city centre, which attracts well over 30,000 women and raises funds for the society every year, was due to take place on Sunday, May 31.

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