Irish Haemophilia Society E-zine: Jan 15, 2021

Irish Haemophilia Society eZine: January 15, 2021
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An Update from I.H.S. CEO
January 15, 2021

Covid-19 Vaccination

We currently have no information on when and where people with haemophilia and other inherited bleeding disorders will be offered vaccination for Covid-19. We also have no information on which vaccine you will be offered. Information has been produced by the National Coagulation Centre and separately by the WFH, EHC, EAHAD and NHF jointly on how to safely administer an intramuscular vaccine to people with bleeding disorders. This information in on the Society website and is also reproduced in this e zine. The Government has produced an initial prioritisation list for vaccination as follows:

Much will depend on the supply of vaccines. In the past two days, the Government have indicated that they hope to vaccinate 700,000 people by the end of March this year and 4 million by the end of September. This is obviously predicated on approval of the Astra Zeneca vaccine by the EMA (anticipated for January 29^th) and the subsequent approval and supply of other vaccines.

We will keep members updated if and when we receive any further information. We also plan to host a webinar on Covid-19 and Vaccination in Ireland in February and of course, we have Dr. Cillian De Gascun, from NPHET and head of the National Virus Reference Laboratory speaking at our Annual Conference on March 2^nd.

A guidance document for health care workers on vaccination of people with haemophilia, von Willebrands and other inherited bleeding disorders has just been produced by the National Coagulation Centre at St. James’s Hospital. It is reproduced here:

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A guidance document has also been produced jointly by the World Federation of Hemophilia (WFH), European Association for Haemophilia and Allied Disorders (EAHAD), European Haemophilia Consortium (EHC), and U.S. National Hemophilia Foundation (NHF).

It is reproduced here:

World Federation of Hemophilia (WFH), European Association for Haemophilia and Allied Disorders (EAHAD), European Haemophilia Consortium (EHC), and U.S. National Hemophilia Foundation (NHF).

It is important that haemophilia treatment centres, in close collaboration with patient organizations, take action to inform people with bleeding disorders about the COVID-19 vaccines and contribute to an effective vaccination program.

1. People with bleeding disorders are not at greater risk of contracting COVID-19 or developing a severe form of the disease, so they are not considered a priority group for vaccination.

2. The vaccine should be administered intramuscularly. The smallest gauge needle available (25-27 gauge) should be used, if possible. Some vaccines must be administered using the accompanying needle–syringe combination, and so the use of an alternative needle may not be possible or desirable. Pressure should be applied to the site for at least 10 minutes post-injection to reduce bleeding and swelling. Additionally, self-inspection/palpation of the injection area several minutes and 2-4 hours later is recommended to ensure that there is no delayed hematoma. Discomfort in the arm felt for 1-2 days after injection should not be alarming unless it worsens and is accompanied by swelling. Any adverse events (e.g., haematoma, allergic reaction) should be reported to a haemophilia treatment centre.

3. Patients should contact their physician immediately or go to the nearest hospital emergency room right away if they experience an allergic reaction (fever, warmth, redness, itchy skin rash, shortness of breath, or swelling of the face or tongue) as it can be life-threatening. Patients with a history of allergic reactions to extended half-life clotting factor concentrates containing polyethylene glycol (PEG) should discuss vaccine choice with their physician because some vaccines contain PEG as an excipient.

4. Many individuals with bleeding disorders may not have ready access to haemostatic therapies prior to vaccination. In these cases, make efforts to access other clotting factors if possible. Alternatively, follow the instructions above making sure the smallest possible needle is used and maintain pressure for more than 10 minutes.

5. For patients with severe/moderate haemophilia, the injection should be given after a factor VIII (FVIII) or factor IX (FIX) injection. For patients with a basal FVIII or FIX level above 10%, no haemostatic precautions are required.

6. Patients on emicizumab (with or without an inhibitor) can be vaccinated by intramuscular injection at any time without haemostatic precautions and without receiving a dose of FVIII.

7. Patients with Type 1 or 2 Willebrand disease (VWD), depending on their baseline von Willebrand factor (VWF) ristocetin cofactor (RiCof) activity levels, should use therapies (i.e., DDAVP if available, tranexamic acid), in consultation with their haemophilia treatment centre. Patients with Type 3 VWD should be given a VWF-containing injection.

8. All rare bleeding disorder patients (including those with thrombocytopenia and/or platelet function disorders) should be vaccinated. Patients on anticoagulants should have prothrombin time testing performed within 72 hours prior to injection to determine international normalized ratio (INR); if results are stable and within the therapeutic range, they can be vaccinated intramuscularly.

9. There are no specific contraindications to vaccination related to complications of haemophilia and other bleeding disorders or their therapies. Immune tolerance, treatment of hepatitis C and HIV, and other conditions do not contraindicate vaccination.

10. Vaccination is not contraindicated for patients on immunosuppressive agents (cortisone, other immunosuppressive drugs).

11. Potential contraindications should be discussed individually with the physician because recommendations vary in different jurisdictions due to lack of data in special populations (e.g., pregnant or breastfeeding women).

12. The U.K. Medicines and Healthcare Products Regulatory Agency and the U.S. Centers for Disease Control and Prevention have advised caution in using the Pfizer/BioNTech vaccine in people with a history of significant allergic reactions. Specific recommendations for people with a history of allergic/anaphylactoid reactions can be found in the advisory published by each agency.

13. For patients in a clinical study, vaccination should be reported to the study investigators.

Zoom Webinars

As the adult hospitals prepare for a surge in Covid-19 cases, two of the planned zoom webinars this month with the team from the NCC have been postponed and will be rescheduled as soon as possible. An updated list of zoom webinars is contained in this e-zine.

Due to the anticipated surge in cases, no routine or non-urgent elective procedures are being carried out at the NCC at present, the vast majority of consultations are now virtual. Cork University Hospital are also doing a large proportion of their consultations virtually at present. Most appointments for blood tests have been postponed. Obviously, urgent care will be provided at all centres where required and members should not miss crucial appointments which are scheduled.

Book Club

We are gauging the level of interest in participating in a Society Book Club. If you are interested, please e mail [email protected] (mailto:[email protected]) by next Friday, January 29^th. If there is sufficient interest, we will then circulate a list of 4 possible fiction books for interested members to choose one and hold a Book Club meeting to discuss the chosen book on February 16^th at 6.30pm.

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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have a further meeting coming up on;

Thursday, January 28, 2021 @ 6pm:

Update from CHI: Clinical trial on new EHL FVIII up to age 18
with Dr. Beatrice Nolan

To join us for any of this meeting, please use the link & meeting ID below:

Join Zoom Meeting
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Password: 1968

If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.

FYI: We shall be recording the audio and slides from selected Webinars to make them available to those that cannot attend. Please be assured that only audio from speaker's presentations and not Q&As will be recorded. Attendees will not be identifiable on the recordings.

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AGM & Conference 2021
The Irish Haemophilia Society is delighted to announce a Virtual AGM & Conference 2021. The conference will take place March 1 - 4.

AGM Packs will be going out to members before the end of the month.

The event is free to attend but you must register beforehand.

For now, why not check out the preliminary programme below?

AGM 2021 Virtual Conference – Preliminary Programme
March 1st – 4th
Monday March 1
Theme: Treatment
18.00 – 18.45 Review of Novel Therapies
Speaker: Prof. Flora Peyvandi
18.45 – 19.00 Break
19.00 – 19.45 An Overview of Gene Therapy
Speaker: Dr. David Lillicrap
19.45 – 20.00 Discussion Panel (TBC)

Tuesday March 2
Theme: Comprehensive Care
18.00 – 18.20 Covid-19 and Vaccines
Speaker: Dr. Cillian De Gascun
18.20 – 18.45 The Use of Technology (This session will also include an update on the Lighthouse Project and the Patient Portal.)
Speakers: Mr. Fergal McGroarty, Dr. Niamh O’Connell
18.45 – 19.00 Break
19.00 – 19.20 Dental Care
Speaker: Dr. Alison Dougall
19.20 – 19.40 Resilience and Mental Health
Speaker: Dr. Patricia Byrne
19.40 – 20.00 Targeted Physio at Home
Speakers: Mr. Mark McGowan & Ms. Sheila Roche

Parallel session

Theme: von Willebrand’s Disorder
18.45 – 19.30 Update on VWD Guidelines, Treatment and Care
Speaker: Dr. Michelle Lavin
19.30 – 20.00 Living with VWD, a panel discussion
Speakers: Donal McCann & Breda Queally

Wednesday 3rd March
Theme: Changing face of treatment in Ireland
18.00 – 18.30 Update on iPATH
Speaker: Professor James O’Donnell
18.30 – 18.45 Break
18.45 – 19.45 The Changing Face of Treatment in Ireland
Speakers: Dr. Beatrice Nolan, Dr. Niamh O’Connell, Declan Noone and Brian O’Mahony
19.45 – 20.00 Questions and Answers

Thursday 4th March
18.00 – 20.00 Annual General Meeting 2021

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Update from the National Coagulation Centre
As of January 8, 2021

We have received an update regarding services in the National Coagulation Centre in light of the evolving Covid-19 situation we find ourselves in:

As we have entered the third wave of this global pandemic, we would like to thank you for your continued support and patience during this healthcare emergency.
* All routine procedures have been cancelled across the adult healthcare system until further notice.
* Patient consultations will continue either by telephone or video call. Face to face consultations will be arranged in situations – where the consultant deems it necessary.
* Phlebotomy / Blood testing will be restricted to urgent blood tests only, as determined by the NCC medical team.

The H&H Assessment Unit (HHAU) is open to patients for urgent treatment only and this must be discussed with the NCC team before you come to St. James’s Hospital. The unit will operate from 08:30-17:00 hrs Monday – Friday only. Where possible you should attend the HHAU on your own, however, if you require assistance, a person may accompany you but may be asked to wait outside of the HHAU area until you are ready to be discharged.

– We do not have any information on the rollout of the vaccination to those in the community at present, however, if you go to the ‘COVID-19 Vaccination’ heading on the National Coagulation Centre webpage on www.stjames.ie ([link removed]) you can access instruction for your healthcare provider on how to prepare you for COVID-19 vaccination.

The contact details remain unchanged:

For Non Clinical Queries: Queries in relation to non-clinical requests: appointments, documentation requests….

Monday – Friday 08:30 – 17:00
Please call (01) 4162141 / (01) 4162142
Fax: (01) 410 3570
Email: [email protected] (mailto:[email protected])
Postal address:
National Coagulation Centre,
St James’s Hospital,
James’s Street
Dublin 8
D08 A978

For non-urgent clinical queries: Monday–Friday 08:00-17:00hrs Phone (01)4103130 and leave a message with your name, hospital number and contact details

For emergency / urgent calls in relation to an active bleed or possible bleed or an urgent unplanned procedure: Please call (01) 4103000 and ask for bleep 721 or call (087)9010301 to contact our Advanced Nurse Practitioner.

Out of hours Monday – Friday 17:00 – 08:00hrs weekends and bank holidays: Please call the St James’s Hospital switchboard (01) 4103000 and ask for the ‘on call’ Haematology Senior House Officer.

If you are admitted to another hospital, ensure that the staff at that hospital are aware of your bleeding disorder and ask them to contact the team in St James’s Hospital through our contact details on the St James’s hospital website.

The situation is constantly evolving and we will endeavour to keep you informed of any changes through the I.H.S.

Keep safe.

From all of the team in the NCC.

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Brian O’Mahony Award 2020
For outstanding contribution to haemophilia care in Ireland.
Nominations are now open for the 2020 Brian O’Mahony Award for outstanding contribution to haemophilia care in Ireland.

Nominations can be proposed only by members of the Society. Members of the current board or staff cannot be nominated. If you would like to nominate an individual who, in your opinion, has made a real difference in haemophilia care in Ireland, please send your nomination to:

[email protected] (mailto:[email protected])

The closing date for nominations is January 20, 2021.
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Novel Treatments in Haemophilia & other Bleeding Disorders

A Periodic Review | 2020 – Issue 2

The therapeutic landscape in haemophilia continues to change rapidly and it can be difficult to keep up to date.

The Society has adapted a publication compiled by the European Haemophilia Consortium to produce a comprehensive update on ‘Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review’. It is designed to be informative for both people with bleeding disorders and health care workers.

It is available to read / download here ([link removed]) & for physical copies, please contact the office.
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Our Winter Mag Is Out Now!

Our Winter Magazine is out now & comes packed with loads of interesting articles from members and staff, news and updates, reports and more.

2020 has been a strange year to say the least and within the magazine we both reflect on this year and look forward to the future. A lot has changed during 2020 but it was another busy year for the I.H.S. with some big announcements and steps toward new and exciting treatments. In the spirit of end of year reflection, that is the theme of Barry's article on the Society's response to the pandemic.

In Brian’s CEO Report he provides details of our forthcoming Virtual AGM in March 2021, along with a look at new treatments and Covid-19 & Vaccines. Later in the issue, Brian also continues to chart the evolution of Haemophilia Care in Europe.

Elsewhere, there is news of educational grants awards for 2020, details of Patient Advocacy Service and we have some insight how haemophilia care has continued during the pandemic with Sheila Roche, Clinical Specialist Physiotherapist in St. James’s Hospital.

Members should have all received your copy in the post but you can read ithere ([link removed]) .
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Travelling or Studying Abroad?

What You Need to Know....

If you are relocating or studying abroad there is a lot to consider before you travel.

Each country has their own rules and regulations that you must follow to ensure you receive equivalent healthcare to what you receive here in Ireland.

Most countries cover emergency / urgent healthcare that is required while a person is visiting, in accordance with your health / travel insurance. However, this usually does not extend to regular haemophilia treatment and does not cover prophylaxis nor regular on demand therapy.

To help, our outreach co-ordinator Robert has designed a handy and informative infographic to outline all you need to know. You can check it out on our website ([link removed]) .

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Watch I.H.S. Webinars On Demand

We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed at your convenience

A sample of what we have uploaded so far;
* An Update on the National Coagulation Centre with Dr Niamh O’Connell (Oct)
* Exercise & Health Session from our Virtual October Conference
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* Update on New Children’s Hospital with Eilish Hardiman, CEO
* Exercise and Physical Activity for Children with Paula Loughnane, Senior Physiotherapist at CHI Crumlin
* Dental Care and Nose Bleeds in Children with Dr Kirsten Fitzgerald and Dr. John Russell
* Gene Therapy Discussion with I.H.S. CEO Brian O'Mahony & EHC President, Declan Noone
* The Role of the Advanced Nurse Practitioner in Haemophilia with Niamh Larkin, cANP

You can watch them here ([link removed]) .

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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 Children’s Health Ireland at 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 Children’s Health Ireland at 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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