People with a genetic blood condition having difficulties during pandemic

People with a genetic blood condition more common in Ireland than anywhere else in the world have been experiencing increased difficulties in accessing treatment during the pandemic, according to a patient advocacy group.

Haemochromatosis is a hereditary condition known as the “Celtic Condition” as it particularly affects Irish people. It is estimated that one in five Irish people carry one copy of the gene and are carriers, and one in 83 people carry two genes and are predisposed to developing the condition.

Those with the condition have excess amounts of iron in their blood. If left untreated the overload of iron can lead to potentially fatal levels in the pancreas, heart and liver.

Iron is stored in the body as a protein known as ferritin. Normal levels of ferritin range from 12 to 300 nanograms per litre, but in those with haemochromatosis it can rise above 3,000 nanograms before treatment.

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The standard treatment to reduce iron levels is a procedure known as a venesection, which essentially removes blood from the body. People with serious conditions soon after diagnosis may need this done once a week, but it can reduce to two or three sessions a year when the condition is stabilised.

Difficulties

The Irish Haemochromatosis Association (IHA) has said there was inequity of access pre-Covid and difficulties have been exacerbated during the pandemic.

Kieran Carrick, from Dundrum, Dublin, was diagnosed 22 years ago and needs to have a venesection about three times a year. Until 2020 the Irish Blood Transfusion Service (IBTS) was facilitating that treatment. While many who have the condition can be blood donors, Mr Carrick is one of those who cannot donate blood because of another condition. Since the pandemic the IBTS is accepting bloods only from donors which has meant Mr Carrick has had to seek alternative facilities.

“Normally when people reach a healthy level of iron they excrete the excess from the blood. But if you have haemochromatosis that switch does not work and you continue to store up iron. If not treated it can kill you.”

Mr Carrick was first diagnosed after suffering from persistent fatigue. Further testing showed that three of five siblings in his family had the condition.

Since the IBTS service ended he now gets the venesection done privately at a cost of €300 a year. “It’s one aspect of my health I can control. I can afford that money but others can’t. I’d be worried about people delaying it.”

Former senator Maurice Manning is the chairman of the IHA, having himself been diagnosed 20 years ago.

“The biggest problem we have is the lack of awareness of how many people actually have it. “If it’s detected early, for many people it can be treated very effectively. “When it is not detected people would needlessly die. If I had not been detected I would be dead now.”

Dr Manning said some hospitals have very long waiting lists. “The biggest problem is that it costs €80 each time and for those with serious cases they have to give blood once a week. They travel long distances to give blood and then they are charged. The danger is that some don’t go and their condition deteriorates.”

He added: “We don’t know how many people have it. There needs to be an awareness campaign.”

The treatment should be provided for free as it was “life-saving”, he added.

Donations

For its part the IBTS said during the pandemic its service has been by appointment only for donors, including people with conditions deemed safe to give donations. However, the service added it is “no longer able to accommodate people with haemochromatosis (who cannot donate blood)”.

The IHA said the biggest gap was for those who were above the income threshold for a medical card but could not afford private health insurance. Some would be faced with bills for treatment of over €1,000 per annum. It called for treatments for those with the condition to be included on the long-term illness list.

A spokesperson for the HSE said that since January 2020 the venesection service is now included in the GP contract for people holding medical cards or doctor visit cards. “We are on course to exceed 6,000 treatments delivered in 2021 under this scheme to those with medical cards or doctor visit cards.”

It said the IBTS had previously delivered some service for people who needed venesection but could not donate (blood). “This was stood down during the Covid-19 pandemic. However, the options for people who can donate have increased,” it said.