Many patients with Hereditary Haemochromatosis can now give blood and save lives

Many Hereditary Haemochromatosis (HH) patients can now become regular blood donors at all blood donation clinics nationwide, including local community clinics.

Potential donors must meet specific Haemochromatosis management criteria below AND standard blood donation criteria, to be able to attend clinics to give blood which can then be used to save patients lives throughout the country. You will not need a prescription from your doctor to donate (excluding Stillorgan Friday therapeutic clinic). 

Why these new changes should excite HH patients?

Currently when receiving treatment for HH, all blood is discarded after treatment. Now, this new service means in many cases, your blood collected at blood donation clinics, may no longer be discarded and could now be used to save other's lives.

IBTS aims to collect 12,000 donations annually from HH donors (approx. 10% of the national blood supply).

For many patients, it means they can now attend clinics closer to home and at a more convenient time such as evening clinics

You will now receive your venesection in an environment where you are a donor, not a patient, and will be helping release day care beds and resources for other health service treatments

What criteria apply in relation to their HH status?

To be able to give blood, as an individual with HH, you

 - must have completed iron depletion therapy, have had at least 1 therapeutic  venesection without complication, and be in the maintenance phase (defined by IBTS for donation purposes as requiring no more than 8 venesections per year)

 - will only be able to attend an IBTS clinic up to 4 times a year, with 90 days elapsed between venesections

 - must have had your ferritin levels checked at least once in the last year with your GP/Consultant 

 - must not have had a venesection in the last 2 weeks prior to the blood donation clinic

 - must not suffer from serious complications as a result of HH (i.e.) liver cirrhoris, cardiomyopathy, cardiac arrhythmias, or insulin dependent diabetes mellitus

 - First time HH donors must be aged 69 and under. We currently cannot accept any donors 70 and older

 - Regular donors can be accepted over 70 once they meet the whole blood eligibility criteria and have a GP fitness to donate letter

Individuals with HH who don’t and have never required venesection can give blood

In addition to the above, what criteria apply in relation to blood donation?

All potential blood donors can view the main blood donation eligibility criteria at  https://www.giveblood.ie/Can-I-Give-Blood/ . You can take a quick eligibility test that covers the main reasons why someone might not be able to give blood, and also research a detailed FAQ section. In addition, you can contact the donor line at 1800 731 137 if you are still unclear.

How often can I attend and will my blood be used to save lives?

The IBTS aims to provide a safe and sustainable supply of blood to Irish hospitals while ensuring both patient safety and donor wellbeing.

With this in mind, providing you as an eligible HH patient who also meets normal blood donation criteria, will be able to donate every 90 days (i.e.) up to 4 times a year normally. And your blood will now be able to be used as part of the normal blood supply to hospitals.

In instances, when you become a blood donor but are temporarily ineligible to donate blood e.g. a travel deferral, as long as it is over 90 days since you last had a venesection, then IBTS will take a donation but not make this blood available to the national supply. Do please note that if as a donor you are feeling unwell when attending the clinic, a donation will not be taken.

Finally if a HH patient is permanently ineligible to give blood then unfortunately like the rest of the population, you will be unable to attend blood donation clinics in any instances.

What about a HH patient’s on-going maintenance and care?

IBTS collects blood from volunteer donors for the benefit of hospital patients. All donors remain under the care of their doctor for monitoring of any medical conditions including Haemochromatosis. IBTS does not monitor donor Ferritin levels.
IBTS will send an email annually to all donors with HH to remind them to maintain contact with their consultant/doctor for monitoring their maintenance treatment.  In addition all donors receive a ‘thank you for attending’ text message post clinic so they will have a record of when they have attended IBTS clinics.

What happens if I believe I am eligible and attend a blood donation clinic?

When attending their local clinic, members of the public who have Hereditary Haemochromatosis (HH) will have their eligibility to donate assessed by completing a Health and Lifestyle Questionnaire (HLQ). There is a new question on the HLQ asking about a diagnosis of or treatment for HH, please answer yes if this applies to you. Following an interview with IBTS staff, if you fulfil all other IBTS criteria to donate, we will measure your haemoglobin level using a finger prick test. If the result is within range we will collect a donation of blood along with samples for testing.  The IBTS will NOT monitor your Ferritin levels; you must continue to attend your treating physician for the management of your HH.  Phlebotomies will be at a maximum frequency of 4 per year with a minimum of 90 days between phlebotomies.

You can check for standard blood donation criteria which you must meet to be a blood donor, and you can check for upcoming clinics here. Please note all clinics are now appointment slot based.

Don't hesitate to call 1800 731 137 if you have any further queries or to make an appointment to attend.

Updated 5th January 2022