The late Marion Kelly
The daughter of Nenagh woman Marion Kelly who died suddenly 12 days ago, has said that it seems to her that what the HSE and the drug company CSL Behring are doing to Alpha 1 sufferers is "inhumane".
Grandmother Marion, 53, had been on a drug trial for Respreeza for 11 years until last September when the drug was stopped following a dispute between the company and the HSE over who should pay for its administration.
Now Aideen Kelly, Marion's daughter, told the Claire Byrne Show on RTE 1 television this Monday that at the end of September the drug company agreed to give the drug six months for free, but there was a dispute. They said they weren't going to pay for its administration, that was up to the HSE to fund that for them.
"But it never came about. Two people have now died. It doesn't take a genius to work out this drug was helping them," said Aideen.
Another Alpha-1 sufferer, Anne Cassidy from Donegal, has also died since the trial was ended.
Alpha-1 antitrypsin deficiency, is a genetic condition that attacks the liver and lungs.
She told the programme that her mother could still possibly still be alive if they had just let them have this drug.
"It seems to be so inhumane what they are doing to these people. It ultimately feels to me that they just let her die. The cost of administration for six months was only €6,000, €6,000 to keep my mum alive. Her life wasn't worth that to them. They are more than just numbers in a file. They are human beings. They don't deserve to be treated like this," she said.
Aideen outlined her mother's medical history, saying that when she was in her late 30s, Marion was hospitalised in Nenagh a couple of times and they just thought it was chest infections.
She was then diagnosed with Alpha 1 and was in and out of hospital. She needed help with dressing and showers.
"I took over being her full time carer. She had no quality of life. She was offered the chance to start the clinical trials. She was offered the drug for free and they paid for the administration of the drug. As the trial progressed, she wasn't deteriorating as fast. She would actually come with me to do the grocery shopping, which was something she hadn't been able to do before. She was in and out of hospital maybe once every two years instead of six or seven times per year," said Aideen.
She said that following her mother's death, while they were heartbroken they were "so angry that she had to die" and wasn't given the fighting chance that she deserved.
"That will stay with me for the rest of my life that she felt there was a price tag on her head and that her life wasn't worth this. That is so frustrating. If these people could just see, these are real live people and they don't deserve to suffer," said Aideen.
Ms Kelly said that if she ever had the opportunity to sit down with Minister for Health Simon Harris, and explain in detail what she saw, what she had to see, there was no way they let someone suffer.
"While we are are grieving, we need to fight for the remaining 19 people. She would not have wanted her death to have been in vain," said Aideen.
She said she did not want to go into too much detail about how her mother suffered in her final days because she am conscious there were still 19 people fighting for this treatment, "but it was horrific what our family had to suffer".
Defending their actions, Prof Michael Barry, clinical director for the National Centre of Pharmacoeconomics, said while the Respreeza had a benefit, not on all aspects, including quality of life, they (the company) were looking for €81,000 or €37m over five years.
"The question is it worth the money and the conclusion is no. There is nothing to stop the company coming into the HSE tomorrow and reducing its prices. and potentially turning a no into a yes," he said.
Prof Barry said that the they had assessed the drug and while it did work somewhat, and it did have a positive benefit on CT scanning, it did not prolong your life.
Marion Kelly had been granted the drug by Behring under a compassionate scheme, and Prof Barry said he was not so sure compassion was the word to use for such schemes, "and I have a problem with such schemes".
Prof Barry said it was important to point out that the HSE had nothing to do with compassionate schemes.
Following Marion's death, a spokesperson for the HSE told the Tipperary Star that the HSE will cover the cost of administering the drug to those who were on the original Respreeza trial for a transition period of six months.