The late Marion Kelly: her family has campaigned to allow patients access to Respreeza
The family of a Nenagh woman, who died just under a year ago after a trial drug that had turned her life around was withdrawn, have said that the agreement reached by the HSE and the drug manufacturer to make it available again indefinitely is hugely welcome but bitter-sweet.
Responding to confirmation that the HSE and CSL Behring - the manufacturers of the drug Respreeza – have announced the treatment is to be guaranteed for the 19 Irish people battling the rare disorder Alpha-1 antitripsan deficiency, the family of Marion Kelly (53) have expressed relief that the common sense denied Marion has now at last prevailed.
The Kelly family have spent the 12 months since Marion’s death leading a campaign to secure the long-term provision of the drug and have said today that the positive outcome means that her death was not entirely in vain. All patients battling the disorder were informed yesterday that the drug has been secured indefinitely.
Marion was one of just 21 people countrywide with the rare disorder, Alpha-1 - a genetic condition that can cause severe lung and liver problems – that were put on the trial 11 years ago but she died shortly after the trial was withdrawn, following the failure of the HSE to reimburse it.
The former hairdresser’s death came just a fortnight after she made a desperate plea for help on social media as she told of her fear for her life after the government and the HSE “decided to take that drug (Respreeza) away from us”. At the time, six months free supply of the drug sat in storage in Dublin, while the HSE refused to pay for the administration of the drug.
The furore immediately following her death saw the administration of the drug being restored within days of her passing for six months.
In a statement, the family said: “We are relieved with the outcome on the long term provision of Respreeza for the Alpha-1 patients who participated in clinical trials. This is a campaign that Marion started and was very passionate about while she was alive and would have wanted us to fight until a positive resolution was found for her fellow alpha 1 patients. Thankfully, today that fight ends and Marion can rest in peace.
“For nearly three years the Alpha-1 patients have had to live with a lot of uncertainty around the supply of Respreeza, the drug that has given them such a good quality of life for 11 years . They had to endure a period of time without the drug and during this time Marion and Anna Cassidy tragically passed away.”
The statement continued: “At a time when the patients should have been focusing on their health, they and their families had to fight for the right to not have this drug and effectively their lives taken away from them. There is still a massive question mark as to why that happened and that’s a question mark that rests on Marion’s grave.
“However, notwithstanding the needless loss of her life and all it has done to our family, today we are hugely consoled by the fact that the others, Marion’s friends and companions in this fight, can be at ease after the HSE finally listened and agreed to put this drug back on.”
The family said, however, that though this was a positive day in so many ways, Marion’s loss weighs heavy on them.
“We are in no doubt that Marion would still be with us today if it was not for the inaction of the HSE. The HSE had the means to do something but instead chose to sit idly by while Marion fought for her life until she could fight no more.
“While today’s news is the outcome we wanted, this was not a journey we would have ever wanted to embark on. Compounding our loss was the frustrations experienced through interactions with the HSE. We felt a distinct lack of compassion for our case and had to push this the entire way.
“Those running the HSE need to reflect on this because the reality of our experience is that the duty of finance won out over the duty of care.”
The family went on to thank the many people who had helped them get this result, not least the drug company, CSL Behring, Deputy Alan Kelly and Minister Simon Harris. “We will be forever thankful to Deputy Alan Kelly for kicking open the doors for us and for his tireless support during this campaign and loyalty and support to Marion prior to her death. We also would like to express our sincere appreciation to Deputy Micheál Martin and Deputy John Brassil for continuously supporting the Respreeza campaign.
“We would like to also acknowledge Minister Simon Harris for his influence on today's decision. From the moment we met him we had confidence we were dealing with someone who would honour a commitment and he did. Finally, thank you to CSL Behring for their openness and hard work in staying the course on this with the HSE and ultimately ensuring this positive result.”
Concluding, the family said of Marion: “We miss Marion terribly but we are very proud of her legacy, which today is the provision of Respreeza for her remaining alpha 1 family and also the potential to open the door for the drug to be reimbursed for other patients who will very much need Respreeza in the future. Her death should have been avoided but, at least, has not been entirely in vain.”