Sisters Bernie Cannon and Evelyn Cunningham holding medical files relating to their mother Evelyn who died from Amyloidosis three years ago, aged 62.
Family fight for life changing treatment to be made available
Posted: 11:22 am May 22, 2020
A DONEGAL family, who lost two relatives within weeks of each other to the hereditary condition Amyloidosis, are calling for a new life changing drug to be made available in Ireland.
Letterkenny sisters Evelyn Cunningham and Bernie Cannon lost their mother Evelyn on June 3, 2017 aged 62, just eight weeks after their great-aunt Martha McGuinness also passed away from this horrific disease. Amyloidosis is caused by the build up of an abnormal protein in the body’s tissues and organs. It causes heart failure and nerve damage leading to paralysis, incontinence and wasting and it severely impairs virtually all aspects of daily living.
A new drug called Patisiran is being used as a gene silencer and for lowering the levels of the toxic protein that attacks the organs in the UK and in the North, however it is not available in the Republic. This is despite the fact that there is a particular strain of Amyloidosis that affects people of Donegal descent. In an interview with the Donegal News this week Evelyn and Bernie spoke about the long battle fought by their mother who was only diagnosed with Amyloidosis a month before her death.
“There is hope for us but there wasn’t hope for our mum. It was a traumatic few years knowing there was nothing out there that could help our mother while watching her suffer,” said Evelyn.
“We want Patisiran to be made available by the HSE. If you go over the border people have access to it there and with it being a Donegal disease it’s not very fair that people in the Republic do not have access to it.”
The Health Technology Assessment (HTA) have said it would not be cost effective to make the drug available as it would cost €400,000 per patient per year. However after negotiations with pharmaceutical companies the UK has managed to get this figure down to €100,000 per year.
Bernie said while €100,000 seems expensive, when you factor in the cost of hospital stays, consultants, home help and medication needed for Amyloidosis patients it surpasses this figure. The family are calling on the HSE to enter negotiations with pharmaceutical companies to bring down the price and make it available to patients here.
She said: “You can’t put a cost on the suffering that someone goes through. There cannot be a cost when it’s someone’s life you are dealing with and the pain and the suffering someone goes through. We have seen this on a daily basis.”
Evelyn Cunningham who passed away from Amyloidosis on June 3, 2017
“I have never seen anything like what my mother went through,” added Evelyn “it is something we will never get over. You are left traumatised by it, begging for help off doctors but none of them were ever able to help her. She thought she was dying with cancer and they just couldn’t diagnose it. It is one of the hardest things that I have ever went through and it is something that will never leave you the images, the memories, the frustration. We are going to put our energy now and try to put those bad memories to the back of our minds and focus ourselves on fighting for the people that are to come down the line because there is that hope for them as long as this medication is made available in Ireland.”
Amyloidosis, also known as Donegal Amy, has been traced back to Conall Gulban, an Irish king and eponymous ancestor of the Cenél Conaill, who founded the kingdom of Tír Chonaill in the 5th century. The disease originated along a fifteen mile stretch of coastline in North West Donegal. Former Deputy First Minister of Northern Ireland Martin McGuinness, who had links to Inishowen through his mother, died from the disease in 2017.
“I think there is a lot more people with it than what is known and a lot of people will have this in their families and won’t know,” said Evelyn.
“Mum held on and hoped that the doctors would get to the bottom of what was wrong with her and we have that to be thankful for that she did hold on and she got that test and found out what it was and that is going to inform us going forward. There is a 50/50 chance that this will run on to the sons and daughters,” said Bernie.
The sisters are trying to raise awareness about the disease and they are calling on GPs, cardiologists and neurologists to educate themselves about the symptoms such as carpal tunnel syndrome, weakness in the limbs, and an enlarged heart so they know what to look out for as early diagnosis is key. Because so few people have heard of the disease the family found it a very lonely experience because they had no one to turn to for information and support. They began to learn more about the condition after getting in touch online with Rosaline Callaghan who has Amyloidosis and who lost her father, from Burt, to the disease as well as other family members.
They have come together to set up a Facebook page called ATTR Amyloidosis Ireland Support Group which already has over 70 members. The group’s aim is to create awareness and advocacy for those impacted by the disease and their families. Anyone in need of support or help is encouraged to reach out through the Facebook page or contact Rosaline by email on Irishrosaline@gmail.com
Evelyn and Bernie have also contacted local TDs in the hope of bringing their fight for Patisiran to be approved by the HSE to the Dail so that the drug is available for all residents on the island of Ireland.
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Posted: 11:22 am May 22, 2020