Áine Morgan was running out of treatment options until she heard about Pembro. Having access to the drug has given her renewed confidence, writes
In November last year, campaigner Vicky Phelan appeared alongside Áine Morgan on RTÉ’s Claire Byrne Live programme to call for the experimental drug Pembrolizumab to be made available by the HSE to all women in Ireland with cervical cancer, not just those affected by the smear test scandal.
The appearance of these women, both terminally ill with the same cancer but one having the drug paid for and the other not, led to an outpouring of public support. Following an intensive lobbying campaign, the government confirmed in January that Pembro, as the drug is known, would be made available on a case-by-case basis to all women with cervical cancer, with the cost covered by the State.
Phelan credits the drug with significantly shrinking her tumours and saving her from another punishing round of palliative chemotherapy. She gets an infusion of the drug every three weeks in St Vincent’s Hospital in Dublin and noticed a positive effect almost immediately when she began the treatment, which can cost up to €8,500 per dose. Phelan initially covered the cost of the treatment herself.
“The standard procedure is that you have three infusions and then you have a scan. But I noticed a difference after the first one. I didn’t have as much pain but the most obvious thing for me after one dose was my stomach. The tumour is not in my stomach but it was so big, it was pushing it out so it looked like I was seven or eight months pregnant — I was wearing maternity clothes. But after one dose, it started to go down and by the second dose, it was gone down a good bit. It was a physical thing, that I knew straight away that this was working. At the same time, I don’t think anybody was expecting the shrinkage that I got but the thing is that hasn’t been sustained.
There was a massive shrinkage after the first scan, the second scan showed maybe a minimal shrinkage which wasn’t visible on the scan — but everything was stable and that stability is good. I’m happy enough with that.
Phelan acknowledges that the drug affects people in different ways, but says the side effects for her have been relatively minimal when compared to chemotherapy.
“For me, there is no comparison. I’m lucky, I don’t really have any side effects. I did have at the beginning but the only one I really complained of was like an arthritis effect — I wouldn’t be able to open a carton of milk. But that has resolved itself.”
While Phelan acknowledges Pembro may not work for everyone in the same way, she says affected women deserve the opportunity to at least try it.
“I am under no illusion that it [Pembro] will work for some and not for others but it’s about giving people the chance. If I hadn’t been given the chance with this drug, there’s no question I’d be dead at this stage. Are we not entitled to quality of life when we’re sick?
“What’s the point of keeping someone alive on chemotherapy if they’re going to be so sick they can’t get out of bed?
“That is what drove me last year. I thought: ‘No, I’m not doing this again’. I remembered how sick I was the first time and I said I’d rather just take my chances and die with a good quality of life.
“I’ve been able to have the energy to do lots of things over the last year such as attend concerts and go away on holidays with my family. If I was on palliative chemotherapy and not Pembro, I simply would not have had the energy to do half of what I did last year. Being able to spend quality time with my family is what this has all been about for me.”
For musician Áine Morgan, the decision to give Pembro to women outside of the group affected by the CervicalCheck crisis has been a source of renewed hope. When we speak, she has just had her third infusion of the drug, the cost of which is now covered by the State.
“I’m beyond thrilled,” she says.
Morgan had read about Pembro online but after attending a talk by Vicky Phelan in Galway, her resolve to access the drug was strengthened.
“I had a chat with Vicky afterwards. It was before I started an intensive course of radiotherapy last year and I knew I was pretty much out of options at that stage.”
The 43-year-old from Loughrea, Co Galway, was diagnosed with terminal cervical cancer in October 2015. “According to the doctors, I am a walking miracle. I’ve outlived a prognosis of one to two years by three years and three months,” she says.
While Morgan has not noticed an immediate improvement since she began treatment with Pembro, she is hopeful that she will feel the benefits of the drug after time. Just having access to the drug has given her hope, she says.
“Hopefully over time, as my body adapts to it and gets used to it, I will feel the benefits of it. Because I’ve had continuous treatment for three years, it’s bound to take its toll on the body, and it’s holding me back a bit more, that I’m not feeling the benefit as quickly. I’m very hopeful that I will. It’s a lifeline, it’s hope.
“You don’t know further down the line what advancements are going to be made. Any time is brilliant when you are not really given a lot of time at all. Vicky has outlived her prognosis and I have well outlived mine.”
How effective is Pembro
We spoke to Donal Brennan, professor of gynaecological oncology at UCD and consultant gynaecological oncologist at the Mater Hospital in Dublin, about the use of Pembro in treating cervical cancer.
“It is a new type of therapy — immunotherapy. It is what we call a checkpoint inhibitor. The tumours have developed ways of hiding from the immune system. Pembro basically unmasks the tumours and allows the natural immune cells within the body to attack the tumour. From that point of view, it is totally different to what we would call standard chemotherapy, which targets the tumour itself.”
“It is still very much in its embryonic stages. There is only one trial that has been published and it has only been published in poster format, we don’t even have a paper yet. That was the Keynote-158 study [an ongoing multi-centre trial that began in 2015]. It had 98 women with cervix cancer in it, all of whom had either recurrence or evidence of distant spread of their tumour. They would be the ones with the worst prognosis.
“You need to do a test for a protein called PD-L1 which is expressed in the tumour. That is basically what the Pembro binds to, and if that is not in the tumour, it is a waste of time giving the drug.
“It is like Herceptin — if you don’t have a HER 2 positive breast cancer, you shouldn’t give Herceptin. Likewise, if you don’t have a PD-L1 positive cervix cancer, you shouldn’t give Pembro. In that study, about 80% of the patients did express PD-L1. Of those, only 12 patients responded.”
“What we know is very limited. The average survival in that patient cohort of 98 women was only about six months. With the 12 responders, only six of them were still responding at about 15 months.”
“It is more well-studied in other cancers — [in terms of] melanoma, lung cancer, a small portion of colon cancers, it is off the charts, it is a game-changer. In melanoma in particular, immunotherapy, whether it is Pembro or one of the other types, has changed the face of melanoma. Likewise, in lung cancer, it is very clear that in a proportion of lung cancers, it can be very effective.”
“It shouldn’t be substituted for treatments that we know work — chemotherapy, radiation or in some cases, surgery. There are women coming in who have options, sometimes curative options — which are horrible — but for one reason or another, it has been suggested they try this drug which is very much experimental. For example, if a woman has recurrent or metastatic cervix cancer, the first-line treatment is chemotherapy and a drug called Avastin. We know that 50% of women who are treated with those drugs will live for at least 15 months. We have large trials to confirm that.
“Until Pembro is compared to that, we can’t say… That [process] is very slow which may not help the person in extremis right now, but if you don’t do the studies properly, you will never know which drugs work better than which. The vast majority of new cancer drugs do not beat the standard [treatment].”