Weekly Update from the I.H.S.

Irish Haemophilia Society eZine: March 20, 2020
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An Update from I.H.S. CEO

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.

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.

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 today from the National Coagulation Centre, it was confirmed that the early delivery of home treatment next week combined with a 5-week delivery last month will provide individuals with 2 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.

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. Many of the out-patient appointments at the NCC are now being conducted by telephone consultation. Updated information has been posted on emergency dental services. The information will also be sent out by e mail to any member for whom we have an e-mail address.

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

Reducing your risk of transmission

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.

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.

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.

Services and Support from the Society

The Society staff are all working from home at present. This will be reviewed on a weekly basis. 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.

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.

Brian O’Mahony
Chief Executive
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Important Info Regarding Out of Hours Review at NCC
Urgent / emergency review by the NCC team after 5PM and at weekends / on bank holidays during the COVID-19 pandemic

If you have a bleeding disorder and have a medical issue which needs urgent review, please phone the main switchboard at St James's Hospital on 01 4103000 and ask to speak to the Haematology doctor on call.

Please DO NOT call the H&H ward numbers which you will have been given in the past and are on your registration card.

The on call doctor will discuss your medical issue with you and will decide where best to see you - in some cases, you may need to be seen in the Emergency Department and in other cases (for example, if you needed assessment and treatment for a bleed), we will have an alternative location in the hospital.

As the arrangements are changing according to the situation in the hospital on any given day, it is really important that you phone ahead and speak to the Haematology doctor on call so that we can arrange for you to be reviewed in the best location for your problem.

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Update from Cork Coagulation Centre
March 20, 2020
All outpatients clinics are cancelled for now in the Cork Coagulation Centre, these clinics will operate as telephone clinics for the foreseeable future, including adult and paediatric clinics,

The Cork Coagulation Centre is open for walk in bleeds / emergencies during office hours, patients must contact the centre prior to arriving to arrange a suitable time to be seen, and are contactable by telephone, mobile or email.

After hours service and weekends remains unchanged - contact the haematology team / registrar on call through the hospital switch board.
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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, TCP are moving deliveries a week earlier than scheduled from Monday March 23rd 2020.

People will have received a 5 week supply with their most recent delivery.

The next delivery cycle will start on Monday March 23rd and will also be a 5 week supply.

Therefore, at the end of the next delivery cycle, everyone on home treatment will have an extra 2 weeks stock of clotting factor concentrate. Later on, when this crisis passes, we will revert back to the usual monthly delivery schedule and stock in the home.
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Update on Dental Services at NCC

The following update on dental services has been received from Dr. Alison Dougall on March 16th.

Dear Patients,

We have reduced our dental service at NCC to an emergency only service from today, 16/03/2020.

All patients can be confident that Cross Infection Control is always stringent and of the highest standard at the State-of-the-Art Facilities at the NCC. We continue to take decontamination extremely seriously and this is led by our vigilant dental nurse Laura Parkinson. Historically we have always provided the same level of vigilance to ALL patients whether they are carrying blood borne viruses or not with use of four handed dentistry, and dedicated dental nurses to decontaminate the whole surgery between each patient and the highest levels and Sterilisation Procedures and traceable instruments over and above National Guidelines.

However, providing many aspects of dental care provides an especially difficult challenge during the Pandemic due to the presence of Covid-19 in both saliva and the nasal passages. Many of the dental procedures we carry out can produce involuntary coughing or gagging. Furthermore, the use of aerosols such as those used by the scalers when we are cleaning teeth and the drills to provide fillings are discouraged during this time as they send particles into the air.

Therefore, treatment which is available at this time in the NCC is limited but includes:
* Dental Extractions
* Placement of temporary fillings
* Smoothing teeth where they are lacerating the mouth
* First stage of root canal to relieve acute pain in front teeth

If you do have a severe dental emergency, we would ask you to do the following;

Telephone the NCC (see numbers below) and one of the team will contact you to assess your dental emergency over the phone and schedule a telephone consult with our dental team as soon as possible.
* Please do not arrive at the NCC unannounced.
* Please do not attend the NCC if you have any symptoms suggestive of COVID-19 infection, if you have been in contact with someone who has the virus or if you have recently travelled to one of the “hot spot” countries.
* The dental team led by Dr. Alison Dougall will contact you within 24 hours ask some questions about your health status and your dental problem.

The dental team can often manage the acute symptoms of a dental emergency with tailored advice and a prescription and will be happy to arrange this by telephone or fax without the need to come into the NCC

If you are NOT in a risk category for COVID-19 and you have an urgent problem such as severe swelling, severe bleeding or severe pain not relieved by pain killers you will be given an emergency appointment to be seen at the NCC to receive emergency care as appropriate.

If you are in a risk category for COVID-19 and have severe swelling interfering with breathing or involving the eye then your care will need to be provided at a designated COVID-19 Emergency Dental Service and such treatment will be co-ordinated by the team at the NCC to assure that you receive safe risk assessed care.

NCC Opening Hours 08.30-17.00, Monday to Friday

Phone: 01 410 3129/410 3130/416 2141

Out of Hours Service: after 17.00 or at Weekends and Bank Holidays

Contact St James’s Hospital via the main switchboard on 01 410 3000 and ask for the Haematology SHO on-call.
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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 postponed until further notice and has been re-scheduled provisionally for August 29th. Apologies for any inconvenience caused.

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. Apologies for any inconvenience caused.

Women & Bleeding Disorders Info Day

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

FYI: This event has been postponed until will be held in 2021 instead. Apologies for any inconvenience caused.
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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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Hyde Square Apartments

Just to remind you all, that the apartment facility for members in Hyde Square apartments will continue to be available for members. Bookings will be taken by phone 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 in the office 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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