Your Weekly Digest from the I.H.S. 

Irish Haemophilia Society eZine: April 3, 2020
View this email in your browser ([link removed])

[link removed]

Covid-19 Update from I.H.S. CEO
April 03, 2020

For Covid-19 and haemophilia, all of the precautions with which we are becoming very familiar to avoid infection apply. Prevention and treatment do not substantially differ because a person has haemophilia.

The World Federation of Hemophilia (WFH) task force on Covid-19 have today issued an information advisory on Covid-19 and Haemophilia. This advisory on specific risks of Covid-19 in those with bleeding disorders is targeted at doctors and health care workers. Here, I will summarise some of the advisory in a question and answer format.

Are people with haemophilia and inherited bleeding disorders at increased risk of acquiring SARS-CoV-2 (the virus) and COVID-19 (the disease)
* No increased susceptibility to infection has been found in people with bleeding disorders who are not immunocompromised. SARS-CoV-2 is passed primarily through droplets in the air coming from infected persons. These droplets get into the upper respiratory tract where they establish an infection.
* There is no information about whether persons with HIV are at increased risk of acquiring the infection. However, if infected with Covid-19, immunocompromised people are at much higher risk for severe disease. For HIV, that includes:

1. People with a low CD4 T-cell count (e.g., <200)
2. People not on antiretroviral HIV treatment
3. If there are other underlying diseases associated with severe COVID-19
4. Additional information is available from the Centre for Disease Control in the USA: read here ([link removed] ) .

What are the risks if you have COVID-19 infection and a bleeding disorder?
* This infection causes a spectrum of disease, from asymptomatic to severe pneumonia and death is some severe cases. While older individuals and those with identified risk factors are at greater risk of serious and lethal disease, children and young adults may also develop severe disease, although less frequently.
* Risk factors include other diseases including hypertension, diabetes, cardiovascular disease, and immunosuppression.
* Individuals with hypertension should not discontinue their medication. Current evidence does not support changes in the management of hypertension.
* As COVID-19 progresses, coagulation pathways are activated. This can in some cases lead to thrombosis. This can be checked by testing for increased levels in the blood of markers called D-Dimers.
* Close monitoring for bleeding and thrombosis is recommended for all individuals and treatment with anticoagulants can be used if there is evidence of thrombosis.
* If COVID-19 is diagnosed, prophylaxis with factor replacement therapy should be continued, and if hospitalised for severe infection, higher trough levels may need to be considered as if treating major trauma.
* The risk of thrombotic complications for haemophilia patients who are currently treated with non-factor replacement therapies including emicizumab (Hemlibra) or therapies currently in clinical trials (e.g. Fitusiran, anti-TFPI) is unknown in the presence of COVID-19 infection.

Does haemophilia impact the treatment of Covid-19 infection?
* Patients with bleeding disorders of all severities and COVID-19 should be eligible for all available therapies that would be required depending on the severity of their condition (including ventilation support).
* Having haemophilia should not be a reason to withhold invasive management of COVID-19.

Adapted from advisory from the WFH COVID-19 Task Force:
Members: Dr. Assad Haffar, Dr. Barbara Konkle, Brian O’Mahony, David Page, Prof. Flora Peyvandi, Prof. Steve Pipe, Mark Skinner and Dr. Radek Kaczmarek and Dr. Glenn Pierce

[link removed]

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]) .

[link removed]



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.

[link removed]

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.

[link removed]



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.



============================================================
** Connect with Us ([link removed])
** ([link removed])
** ([link removed])
** ([link removed])
** (mailto:Mailto:[email protected])
** ([link removed])
LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

** World Federation of Hemophilia ([link removed])

** European Haemophilia Consortium ([link removed])

** Consultative Council on Hepatitis C ([link removed])

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

** Get Ireland Active ([link removed])

** Children in Hospital Ireland ([link removed])

** Health Service Executive ([link removed])

** Irish Health.com ([link removed])

** Citizens Information Bureau ([link removed])
Copyright © 2016 Irish Haemophilia Society, All rights reserved.
As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.

Our mailing address is:
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland

This email was sent to [email protected] (mailto:[email protected])
why did I get this? ([link removed]) unsubscribe from this list ([link removed]) update subscription preferences ([link removed])
Irish Haemophilia Society . Cathedral Court . New St, . Dublin 8, Dublin . Ireland

Email Marketing Powered by Mailchimp
[link removed]