Cork musician and advocate to speak in the Dáil over need for stem cell lab at CUH

Mags McCarthy, a country musician, who grew up on a farm in Dripsey, has became an advocate for people needing stem cell treatment in the south of Ireland, since a facility in Cork University Hospital (CUH) closed 20 years ago.

She is representing patients all over the world, after linking in with international experts and fighting for her father to have the treatment which saved his life.

A US professor who invented a revolutionary cancer treatment, and a lead consultant in CUH, have both said that this type of treatment is the future, and Cork is lagging behind in terms of providing it. 

Four Cork patients have died while awaiting treatment this year.

Leukaemia diagnosis 

Ms McCarthy told The Echo: “My father got diagnosed with leukaemia when was in his 70s, so I started doing a lot of research and saw that, internationally, patients are being transplanted into their 70s.”

Her father received a successful stem cell transplant, the oldest person in Ireland to have undergone the particular type of procedure he received.

She said: “I am so grateful, but it is an unmerciful burden on anybody. He was up and down to St James’ to be assessed. He had to stay six weeks in hospital, and I travelled up and down from Cork to Dublin every day for six weeks.

“Even for the patient having to leave home, it can be very emotional, wondering are they ever going to come back.

“It’s also a huge expense and I started thinking, why is there no transplant centre in the south?

“In layman’s terms, it’s a lab they would need in CUH to start with, and it would increase the national capacity so that people can get the transplant more quickly.

My biggest fear with my dad was wondering if he was going to get transplanted in time before the cancer comes back.

She became an advocate for the treatment after that, and was inspired by the late Dolly Parton, whom she had met when performing in the US.

“I performed with Dolly in 2006, and she said to me ‘some day you might be able to use your voice to help people’,” Ms McCarthy said.

Mags now works as a patient advocate around the world, but one of her main priorities is advocating for a transplant centre in Cork.

CAR-T cell therapy

While researching how to help her father, she came across Professor Bruce Levine, who had pioneered a new form of treatment for patients with blood cancers.

Mr Levine is an immunologist and professor at the school of medicine in the University of Pennsylvania, whose work takes him to other countries to advise on his cell and gene therapy research.

He is a co-inventor of CAR-T cell therapy. He told The Echo: “We take cells out of the patient, modify them, train them, send them to bootcamp,” so that the cells can fight cancers.

CAR-T was the first FDA-approved gene therapy, and in Ireland it is only available in St James’ Hospital in Dublin, while other types of stem cell transplant can be done in Dublin or Galway, but there are capacity constraints, he said.

“We are trying to get it to the south of Ireland, to Cork, where patients have to travel for three hours to get it, which can be a burden on patients and their families.”

He recalled when Ms McCarthy first got in contact with him. “I remember opening up my email and there was one with the subject line ‘help for cancer’, and it said ‘I’m writing from Ireland, I want to talk about CAR-T, can we set up a zoom?’.

He happened to be in Ireland at the time, and they arranged to meet in person.

“I come to Ireland on a regular basis and it popped into my head one day, what if Mags had her own CAR-T song, so I sent her some words that were kind of science-y.”

Just 20 minutes later, she sent him a recording of an acapella version of the song, and they rewrote it together from a patient perspective before Mags recorded it in a professional studio and they made a music video.

Ms McCarthy said that through the people in the video “you see what a therapy can do for someone’s life, when chemotherapy and everything else fails”.

Mr Levine added: “There’s patients that don’t make it, and we honour them. Some don’t respond to the treatment and that means we need to do more work to make it a better therapy.”

However, he said the treatment “gives them a sense of self control, because it’s their own cells fighting back against cancer”.

“There are side effects but it’s not like chemo, where you lose your hair, have constant diarrhoea, kids can often be left with organ damage — this has much less toxicity.”

Dr Vitaliy Mykytiv, a consultant haematologist and clinical director of diagnosis and therapeutics at Cork University Hospital, said: “I know Mags through her father, I had the honour of being his doctor.

“She said that he needed this treatment, and it wasn’t the usual type of treatment in Ireland for people of his age.

“She then became a patient advocate and is very serious in helping us to help other people in Cork.”

Lab needed at CUH

He explained that CUH used to offer stem cell transplants, but 20 years ago the hospital stopped because they didn’t have the lab necessary for the second part of the three part process — cells are removed from patients, they are processed in a lab and then infused.

“In CUH, we could do the cell collection, which is the first step, and we are already looking after patients after the cells are infused, which is the last step.

“What we don’t have is the lab for the second step, which would allow us to do the whole process in CUH.”

These patients come back to Cork to be taken care of after receiving treatment in Galway or Dublin, but Dr Mykytiv said that CUH should be able to offer the therapy to patients in the south of Ireland.

“The Munster region represents a significant part of the population of Ireland, and patients here don’t have equal access to this treatment.

“Also, from the perspective of national capacity, it would definitely improve if Cork was able to look after our own patients.

“In terms of capacity for cellular therapies, Ireland, compared to other EU countries, is quite poor. We have only about one-half to one-third of the capacity they have in countries such as Denmark and Spain, despite Ireland being one of the richest countries in Europe.”

He said that CUH has referred 64 patients so far this year to Galway and Dublin for these treatments.

While 28 have been transplanted, others are at different stages of the pathway, including some who are still waiting to be seen.

“In the past, some patients have not been transplanted because they lived remotely or did not have enough family support, and some patients we referred unfortunately didn’t make it to transplant.

“This year, four patients who were waiting suffered disease relapse, were moved to palliative care and subsequently died,” he added.

Other Cork hospitals also refer patients for these treatments, so over 100 patients per year could potentially be treated in a Cork facility if it were available.

The lab needed in CUH could be provided through a new-build, or potentially fitted into an existing building, but there have been several proposals over the years which have not progressed.

Mr Levine said: “The history of cancer treatment is surgery, radiation, chemotherapy —cut, burn, and poison.”

CAR-T treatment is also being looked at to treat autoimmune diseases such as lupus and potentially fibrotic diseases too, while trials are ongoing to make the process faster and cheaper, he said.

“This is the next pillar of medicine, and you have to build for the future.”

Dr Mykytiv agreed, saying: “This is the next treatment modality — Ireland is not ready for it, and Cork, in particular, is not ready.

“Nobody sees this as important because they think it only serves a small percentage of the population with blood cancer,” but it has huge implications beyond that, and the infrastructure must be prioritised, he said.

Mags to speak in the Dáil

Ms McCarthy added: “There are patients dying because they can’t get their treatment. I’ve known people who had to take trains to Dublin, who didn’t have that same support system — it’s not right.”

She said that she never imagined she would be in this role. “I wish I never knew anything about blood cancer and never met any of these people, but I want to give every human a chance to have access to these treatments, close to home.”

She is to speak to the Dáil on the topic in October, and is bringing other patient advocates, as well as experts from across the world like Professor Ibrahim Yakoub-Agha from Lille University Hospital in France, the current president of the European Society for Blood and Marrow Transplantation.

She said that she has contacted all the local TDs and members of the health committee, and written to the minister for health, the taoiseach and the tánaiste asking for their support, thanking Cork senator Eileen Lynch for opening the door for her to speak in Leinster House.

“This problem has been going on for 20 years, loads of patients have had to go through it,” Ms McCarthy said.

“What I want is a commitment that somebody will build this thing, a timeline for when construction will take place.”

She has a guitar, signed by more than 70 country musicians, that she plans to donate to the facility once it is open, to hang on the wall.

“I am doing my small little bit, as Dolly would say, but if I could help even one patient, isn’t that everything?

“You can talk about cost all you like, but you cannot put a cost on a person’s life.”

Mr Levine added that Ms McCarthy was also inspiring other patients, saying: “If people recognise their own situation or that of someone they know, they know now that they can speak up for themselves and help us try to push this across the line.”