Irish Haemophilia Society e-Zine March 26, 2021

Irish Haemophilia Society eZine: March 26, 2021
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World Haemophilia Week
2021 Theme:
von Willebrands Disorder (VWD)

Von Willebrand Disorder is the focus of World Haemophilia Day (April 17) this year. We fully appreciate the need for greater education about VWD, greater public awareness and greater emphasis from the Society. To this end, VWD will be the focus of our events this year and we plan almost a week of VWD activities.

This will include:
* Wednesday, April 14 @ 6pm: Webinar on ‘VWD Guidelines & Research for Diagnoses & Treatment’ with Dr. Michelle Lavin & Professor James O’Donnell.
* Thursday, April 15: Launch of New VWD Booklet & Social Media Campaign
* Friday, April 16: Launch of New Animated VWD Video
* Monday, April 19 @ 6pm: Webinar on ‘Living with VWD’, a discussion panel with I.H.S. members Breda Quealy, Barry Quealy, Donal McCann & Shannon Carey

To join us please visit haemophilia.ie, call us on 01 657 9900 or please email [email protected] (mailto:[email protected]) for more details.

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Upcoming Webinars

Continuing with our series of Webinars, we have further meetings coming up on;

Wednesday, March 31, 2021 @ 6pm:
‘Hemlibra – An update for Parents’
with Dr Beatrice Nolan, CHI @ Crumlin

Wednesday, April 14, 2021 @ 6pm:
‘VWD Guidelines & Research for Diagnoses & Treatment’
with Dr. Michelle Lavin & Professor James O’Donnell

Monday, April 19, 2021 @ 6pm:
‘Living with VWD’, a discussion panel
with I.H.S. members Breda Quealy, Barry Quealy, Donal McCann & Shannon Carey

Wednesday, April 28, 2021 @ 6pm:
‘An Update from Barretstown’

Wednesday, May 5, 2021 @ 6pm:
Clinical Trials: An Update from the NCC
with Dr Niamh O'Connell, NCC St. James's Hospital


Wednesday, May 12, 2021 @ 6pm:
‘An Update on Vaccines & Side Effects’
with Professor James O’ Donnell

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] 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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Information for NCC patients regarding the Astra Zeneca COVID-19 vaccine

Below is a statement from the National Coagulation Centre (NCC) regarding the Astra Zeneca COVID19 vaccine:

On 18/03/2021, the safety committee of the EMA released a statement which confirmed that the benefits of the Astra Zeneca COVID19 vaccine continue to outweigh the risk of side effects. In particular, there is no evidence that the vaccine is linked to an increase in general blood clots (for example, deep vein thrombosis or pulmonary embolism). There were a very small number of people who had blood clots with low platelet counts (a blood cell which clots the blood) - approximately 1 case per 1 million vaccine doses given.

Importantly, there is no evidence that people with a past history of blood clotting, including blood clots in the brain, are at increased risk for this rare complication. These rare clotting events appear to be due to an unusual response from the immune system and Haematology specialists in Ireland are aware of the recommended blood tests and treatments if there is a suspicion of one of these rare cases. Of note, there has been no case reported in Ireland to date.

This advice was given after a very thorough review of all of the information regarding people who received this vaccine and included input from experts in blood clotting from Ireland and other European countries.

The National Immunisation Advisory Committee has also recommended that the Astra Zeneca vaccine can be used as part of the vaccination programme in Ireland and has issued the following information for vaccine recipients:

Information for vaccine recipients
* COVID-19 Vaccine AstraZeneca is not associated with an increased overall risk of blood clotting disorders.
* There have been very rare cases of unusual blood clots accompanied by low levels of blood platelets (components that help blood to clot) after vaccination. The reported cases were almost all in women under 55 years of age. This may be due to vaccination of healthcare workers in this age group.
* Because COVID-19 can be so serious and is so widespread, the benefits of the vaccine far outweigh the risks of these very rare events.

Seek prompt medical assistance and mention your recent vaccination if you get any of the following after receiving the COVID-19 Vaccine AstraZeneca:
* breathlessness,
* pain in the chest or stomach,
* swelling or coldness in an arm or leg,
* severe or worsening headache or blurred vision after vaccination,
* persistent bleeding,
* multiple small bruises, reddish or purplish spots, or blood blisters under the skin

Remember, some people will experience mild flu-like symptoms including headache, chills, fever and/or muscle aches. These are common side effects of any COVID-19 vaccine. These usually appear within a few hours and resolve within one or two days.

Advice for people who are on anticoagulants and are due to receive any COVID-19 vaccine is available on the patient information tab of the NCC website here ([link removed]) .

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EHC Position Statement on COVID-19 AstraZeneca vaccine

The following is a statement from the European Haemophilia Consortium (EHC) commenting on the European Medicines Agency (EMA) statement regards Covid-19 AstraZeneca vaccine from 19 March 2021.

The European Haemophilia Consortium (EHC) has been closely monitoring the recent safety signal of blood clots in some recipients of the COVID-19 Vaccine AstraZeneca and wishes to inform its community of the following.

The European Medicines Agency (EMA) safety committee, PRAC (Pharmaceutical Risk Assessment Committee), following its preliminary review of this safety signal, concluded that benefits of the COVID-19 Vaccine AstraZeneca still outweigh the risks.

The PRAC has concluded ([link removed]) this despite possible links to rare blood clots with low blood platelets, based on the following (direct quote):

“The Committee confirmed that:
* the benefits of the vaccine in combating the still widespread threat of COVID-19 (which itself results in clotting problems and may be fatal) continue to outweigh the risk of side effects;
* the vaccine is not associated with an increase in the overall risk of blood clots (thromboembolic events) in those who receive it;
* there is no evidence of a problem related to specific batches of the vaccine or to particular manufacturing sites;
* however, the vaccine may be associated with very rare cases of blood clots associated with thrombocytopenia, i.e., low levels of blood platelets (elements in the blood that help it to clot) with or without bleeding, including rare cases of clots in the vessels draining blood from the brain (CVST).

The PRAC’s decision was based on weighing the vaccine’s proven efficacy in preventing hospitalisation and death from COVID-19 against this “extremely small likelihood of developing DIC (disseminated intravascular coagulation) or CVST (cerebral venous sinus thrombosis).”

However, it also calls for patient awareness and “if symptoms suggestive of clotting problems occur (see below) patients should seek immediate medical attention and inform healthcare professionals of their recent vaccination,” and has issued the following recommendation for patients:
* COVID-19 Vaccine AstraZeneca is not associated with an increased overall risk of blood clotting disorders.
* There have been very rare cases of unusual blood clots accompanied by low levels of blood platelets (components that help blood to clot) after vaccination. The reported cases were almost all in women under 55.
* Because COVID-19 can be so serious and is so widespread, the benefits of the vaccine in preventing it outweigh the risks of side effects.
* However, if you get any of the following after receiving the COVID-19 Vaccine AstraZeneca:

1. breathlessness,
2. pain in the chest or stomach,
3. swelling or coldness in an arm or leg,
4. severe or worsening headache or blurred vision after vaccination,
5. persistent bleeding,
6. multiple small bruises, reddish or purplish spots, or blood blisters under the skin,

please seek prompt medical assistance and mention your recent vaccination.

At the time of its position-taking, the PRAC had reviewed seven (7) cases of blood clots in multiple blood vessels and 18 cases of CVST – nine (9) of which resulted in death – and stated that although a causal link with the vaccine had not been proven, it remained possible and would be further analysed.

The PRAC reported that, while the overall number of thromboembolic events post-vaccination was lower than expected in the general population, there remained some concerns regarding these rare blood clot events in younger patients, most of whom were under 55 and primarily women. On this, the PRAC noted:

Because these events are rare, and COVID-19 itself often causes blood clotting disorders in patients, it is difficult to estimate a background rate for these events in people who have not had the vaccine. However, based on pre-COVID figures it was calculated that less than 1 reported case of DIC might have been expected by 16 March among people under 50 within 14 days of receiving the vaccine, whereas 5 cases had been reported. Similarly, on average 1.35 cases of CVST might have been expected among this age group whereas by the same cut-off date there had been 12. A similar imbalance was not visible in the older population given the vaccine.

There is no specific advice for patients with a bleeding disorder issued in the statement. Bleeding disorder patients who have concerns should contact their hematologist. The PRAC will continue to undertake additional reviews of these clotting risks, also with other types of COVID-19 vaccines.

The EHC will continue to closely monitor and update on these developments as necessary.

About COVID-19 Vaccine AstraZeneca

The COVID-19 Vaccine AstraZeneca received conditional marketing approval on January 29, 2021 for people aged 18 years and older to prevent coronavirus disease 2019 (COVID-19). This vaccine is based on a mechanism of action using an adenovirus which was modified to contain the gene that makes a SARS-CoV-2 protein, thereby triggering the immune system against this protein. The COVID-19 Vaccine AstraZeneca itself does not contain the virus and cannot cause COVID-19. Usually, the most common side effects with COVID-19 Vaccine AstraZeneca are mild or moderate and have been reported to improve within a few days after vaccination.


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EHC 2021 Virtual Conference

The European Haemophilia Consortium (EHC) has announced details of it 2021 Virtual Conference. It will open on Sunday October 3 and run till Friday October 8 2021.

The preliminary programme looks very interesting and is available here ([link removed])

You can register to attend here ([link removed]) -

FYI: Patient Registration – non EHC Member (Early Bird) is €15
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Conference & AGM 2021
:: Watch Sessions on Demand ::

Our Conference & AGM 2021 took place virtually this year, with sessions taking place over the evenings of March 1 – 4.

We are very pleased with how the conference went and are thrilled that so many of you could make it. We hope all of you who attended enjoyed the conference and found the sessions informative, engaging and thought provoking.

We are uploading the sessions throughout this week (permission permitting) from conference to the website so you can watch them at your ease, when time allows.

The following are available to watch on our website - click here to check them out ([link removed]) .
* Review of Novel Therapies with Professor Flora Peyvandi
* An Overview of Gene Therapy with Professor David Lillicrap
* Covid-19 & Vaccines with Dr. Cillan De Gascun
* Update on vWD Guidelines, Treatment and Care with Dr. Michelle Lavin
* The Use of Technology with Mr. Feargal McGroarty & Dr. Niamh O’Connell
* Dental Care with Dr Alison Dougall
* Resilience and Mental Health with Dr. Patricia Byrne

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Covid-19 and Vaccination

We have no current information on when and where people with haemophilia and other inherited bleeding disorders will be offered one of the licenced Covid-19 vaccines. Some work has been completed on guidance on giving the vaccine, bearing in mind that these vaccines must be injected by the intramuscular route.

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 on our website, please download the PDF ([link removed]) to your phone or device to bring with you to your vaccination appointment.
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Benefits and Risks from Covid-19 vaccination

The information above is a summary of information shared today by the European Regulator, the European Medicines Agency on the benefits and Risks of Covid-19 vaccination. Their view is that the benefits very clearly outweigh the risks

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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;
* Staying Healthy at Home: Physiotherapy and Exercise Groups with Sheila Roche, St. James’s Hospital
* 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
* 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 us 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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