Irish Haemophilia Society E-Zine April 9, 2020 

Irish Haemophilia Society eZine: April 9, 2020
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Covid-19 Update from I.H.S. CEO
April 09, 2020

In an editorial in the Journal Haemophilia this week, the editor and the leaders of WFH discuss their view of the Global ramifications of Covid-19 in Haemophilia. They are of the view that the pandemic will have direct and indirect consequences on the management of haemophilia worldwide. They state that the consequences may include:
* Interruption of access to supply chains
* Decrease in supply of plasma derived factor concentrates
* Difficulty in access to treatment centres
* Interruption of clinical research programmes including clinical trials
* Cancellation of many educational meetings and events
* Possible future impact on funding for haemophilia due to financial crisis

I will briefly discuss these issues and try to place them in context for Ireland.

There is a concern globally about access to treatment because of interrupted supply chains. Many countries do not have home delivery systems. Countries who are almost totally reliant on the treatment provided by the WFH Humanitarian aid programme will face particular difficulties as the WFH will have difficulty sending the products by air at the current time. In Ireland, we are fortunate that we have in place a robust home delivery service and an additional two weeks supply has been delivered or is in the process of delivery to all on home treatment.

Production of recombinant factor concentrates and other non-blood products such as Hemlibra should not be adversely affected. The situation is more complex for plasma derived factor concentrates as their production relies on the collection of plasma. Plasma donations may be adversely affected if donors become unwell with Covid-19 or if donors stop donating due to the requirement for social distancing and staying at home. There has already been a small decrease in plasma donation in the countries who supply most of the plasma for fractionation (USA, Germany, Austria, Hungary and Czech Republic). However, in these European countries, plasma collection has been designated as part of the critical health infrastructure which should help to maintain donations.

There is no concern in regard to the potential for transmission of Covid-19 through plasma derived factor concentrates. Covid-19 is a lipid enveloped virus which is readily inactivated by the viral inactivation methods currently in use. We have a reasonable supply of plasma derived FVIII (for von Willebrand’s) and FX in the country and indeed our reserve supply was increased last year due to concerns about Brexit.

The situation in our hospitals is changing daily. To date, we have not had any problems with access to haemophilia treatment centres and it must be restated that if any person with haemophilia or an inherited bleeding disorder needs to attend their centre in case of a major bleeding episode or emergency, they should attend. However, do contact the centre first by phone.

The centres are open and operational. Some adjustments in infrastructure have been made. In St. James’s Hospital, out-patients who attend with bleeding episodes now go to the National Coagulation Centre (NCC) and not the H and H ward. These arrangements may change which is why it is important that you phone the centre before attending. Physical locations for treatment may change but we do not anticipate any major interruption of service. Elective surgeries have been postponed but other procedures which are required are going ahead as planned.

We have not seen an impact here on our participation in clinical trials. The FIX Gene Therapy trial has proceeded as planned and the three individuals due to be treated have been treated and are currently being monitored. Other individuals continue on clinical trials for the subcutaneous therapy Fitusiran. Clearly, we do not anticipate the centres starting participation in any new clinical trials until the pandemic crisis has diminished and some other clinical trials have postponed treatment for new individuals abroad. The pandemic may delay the completion of clinical trials and the consequent licencing of some of the new therapies.

There will be a major impact on international educational conferences on Haemophilia. The World Federation of Hemophilia Conference scheduled for June of this year has been cancelled. The International Society for Thrombosis and Haemostasis Conference will become a virtual meeting. These are the two largest and most important Conferences on Haemophilia. The European Haemophilia Consortium conference in October this year is scheduled to go ahead. We anticipate seeing more virtual meetings over the coming year and indeed this may become a continuing trend.

From the Irish Haemophilia Society, our October members conference is scheduled to proceed at present. Some of our smaller meetings have been cancelled or postponed. Next week, we have organised two separate virtual meetings for members using the Zoom platform. If these are successful, we will look at organising further virtual meetings in the coming weeks for members on different topics and for different demographic groups within our community. Indeed, such virtual meetings may well offer an opportunity for the future- not to replace face to face events - but to supplement our interaction with members.

The financial cost to the country of Covid-19 will be massive. However, now is not the time to focus on this. We must focus on staying well, on avoiding Covid-19 infection for ourselves, for our families and for our community. There will be time later to look at the financial consequences. It is reassuring to state that our formal involvement together with our treating Doctors in the procurement process for haemophilia medications has been one of the most effective, efficient and cost-effective procurement systems not only in the Irish health system but in the global haemophilia world. There is no waste in our procurement system and we will continue to work to ensure optimum access to the safest and most effective treatments in the future.

Other Covid-19 Updates:

Potential Treatments:

There has been a lot of media coverage on potential treatments for Covid-19. They have speculated on the possible use of the anti-malarial drug Hydroxychloroquine, various antiviral medications such as Redemisvir and the potential protective impact of the BCG vaccination. Time and ongoing work will tell if these have validity or limited, or no use. It is reassuring to see so many clinical trials progressing on different approaches to treating Covid-19 and indeed the relatively slow pace at which such trials are normally approved, particularly by ethics boards, has been considerably accelerated.

There is interesting work progressing on the possible use of Convalescent plasma to treat Covid-19. The plasma of those who have recovered from Covid-19 may be used as a possible treatment for those with severe Covid-19 infection. Small scale trials have demonstrated some beneficial effect. Yesterday (April 8th), the US Food and Drug Administration (FDA) issued guidelines for investigational use of Convalescent plasma in Covid-19. Convalescent plasma for other conditions has been used in the past as a treatment for those conditions. It is encouraging to see this work progressing as we await the availability of a vaccine for Covid-19.

Covid-19 in Blood

Covid-19 virus RNA has been found in the blood of a very small number of blood donors in China. In a sample of 2.430 donations, viral RNA was found in 4 samples. The presence of viral RNA does not necessarily signify infectivity. There is, to date, no evidence of transmission of Covid-19 via blood or plasma and indeed, when we had the outbreak of the earlier Coronavirus, SARS, in 2003, there was no transmission by blood. However, these current findings should lead to more proactive work by blood establishments to screen out donors who may be at higher risk of Covid-19 and in looking at the development of screening tests for the virus in blood donors.

Reported case of Covid-19 in Haemophilia

Earlier this week, the Journal The Lancet published the first journal reported case of Covid-19 in a person with Haemophilia. This was in a 35-year-old man with haemophilia in China. His normal haemophilia treatment was on demand. He developed mild pneumonia and was treated with immune globulins (often used for primary immune deficiency). He recovered well. He had no bleeding due to his Covid-19 infection.

Brian O’Mahony
Chief Executive
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Webinar and Q&A Sessions

While the developing Covid-19 situation has scuppered our ability to organise events for the time being we have decided to do something a little different and host a series of online Webinars and Q&A Sessions in the coming weeks.

As April 17th is World Haemophilia Day, we will host two Webinars next week on the topic of ‘Haemophilia & Covid-19: The Implications for Haemophilia Services' on:

3PM, Tuesday April 14: Dr. Beatrice Nolan, Paediatric Consultant Haematologist, CHI at Crumlin

3PM, Friday April 17: Dr. Niamh O’Connell, National Director & Consultant Haematologist, NCC

Chaired by I.H.S. Chief Executive, Brian O'Mahony

To join us via Zoom, please email [email protected] (mailto:[email protected]) with your preferred date (or dates, you can join both if you like) and we will provide you with further details.
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Update on Video Consultation from the NCC

While regular clinics and non-urgent day patient treatments are suspended at the moment during this COVID-19 emergency, people with bleeding disorders who have active medical issues are being reviewed by telephone at present, to reduce the need to attend the NCC in person.

With the support of St James’s Hospital and the HSE, the NCC team is now also able to offer video consultation to those people who wish to avail of this, and who have internet access via a smartphone.

From this week, if you are contacted by the Administration team at the NCC to arrange a consultation, you will be offered your choice of telephone clinic or video consultation and you can choose which suits your needs best. If you are interested in video consultation, please have a look at our patient information leaflet (below).

In some cases, it is still necessary to arrange a review in person at the NCC and if so, we will schedule a time for you to attend. It is important to know that we are here and ready to assess and give treatments in person if this is needed.

Read the Patient Information Leaflet here ([link removed]) .

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Comprehensive Care Services & Prescribed HIV Medicines

A couple of quick updates for member’s on Comprehensive Care Services & prescribed HIV medicines.

Comprehensive Care services for haemophilia and inherited bleeding disorders

It is worth repeating that despite the current Covid-19 pandemic, the comprehensive care centres continue to function. If you need to attend with a serious bleeding episode or in an emergency, please do so but do contact the centre by phone before travelling there so that they can give you updated advice on procedures.

Prescribed medicines for those on treatment for HIV

Specialised medicines for those with HIV are normally collected from the special unit in St. James’s Hospital. Arrangements are being made for home delivery of these prescribed medications by TCP for those who are currently on home treatment and home delivery for factor concentrates or Hemlibra.

For those with HIV and haemophilia who are not currently in receipt of home delivery, individual arrangements will be made for each person.

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Barretstown Update

Having suspended all Residential and Outreach Programmes, we have received news from Barretstown that they have, with a heavy heart, to cancel their traditional summer camp programmes for the 2020 season evolving COVID-19 situation.

They are determined to keep the magic of Barretstown alive and for the foreseeable future, through a new interactive online platform, ‘Barretstown Live’. The Barretstown Team has created a specially designed studio on site to deliver these programmes with broadcasts going out live every Saturday from 10am to 4pm to families who were due to come to camp.

In addition, children and families across Ireland can discover the magic of Barretstown through Facebook Live broadcasts taking place every Tuesday, Wednesday and Thursday from 12pm to 2pm.
However, they are currently developing plans for ‘Barretstown Live’ for the summer programme and we will of course keep you updated when we know more.

Find out more about #BarretstownLIVE here ([link removed]) .

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VHI Women's Mini Marathon Update

As you are all no doubt aware, this year’s VHI Women’s Mini Marathon has been postponed due to 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.

Organisers are working hard to re-schedule this year’s event in late September or early October, and we will update you as soon as we can.

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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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Our Spring 2020 Magazine is out now!
The Spring issue of our quarterly newsletter - our first remotely produced & digital only mag - is out now!

The latest issue comes packed with loads of interesting articles from members and staff, news and updates, reports from events and more.

In his CEO Report, Brian provides an update on Covid-19 and Gene Therapy, and reports on our recent AGM. Speaking of the latter, there are loads of photos from the weekend in there too.

There are great articles on the Know Your Flow Campaign ([link removed]) , an iPATH update and personal perspectives on educational grants and volunteering with the I.H.S.

It is our first remotely produced and digital only magazine – given the current situation we all find ourselves in – and we hope you enjoy reading it. You can read it via FlipBook here ([link removed]) or download the PDFhere ([link removed]) .

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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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