People living with cancer and a consultant treating cancer patients were among those addressing the Irish Pharmaceutical Healthcare Association conference. Over the next few days, we tell their stories in their own words.
Miriam Staunton was diagnosed in 2018 with stage 3 melanoma.
“I was 45 with three children and as fit and healthy as I’d ever been. I found a lump under my arm which turned out to be melanoma with no primary source. So, I had no skin lesions and nothing kind of alerting me earlier that there was an issue,” Staunton says.
At that point, she had surgery and radiation, “but I remember the words my oncologist said to me: ‘I’m not in a position to offer you anything systemic at this point’.”
RM Block
“I didn’t really realise what that meant. But what he was saying was that there were treatments available, they were just not available in this country,” Staunton says.
“At the time, in 2018, there wasn’t a gap between public and private [where privately insured patients can get access to medicines not funded for public patients], but there was a gap between borders. So, I could have accessed treatment in other European countries, just not in Ireland.
“What that meant for me was I had to wait until I’d progressed to stage 4.
“So, I went under surveillance and a year later I did progress to stage 4. It had metastasised to my liver and, ironically then, you know, you’re getting the bad news on the one hand that you’ve progressed to a terminal diagnosis, but now you can access treatment that you should have really been able to access a year previous.”
Essentially, treatments were available to treat Staunton’s condition but they were only available for use – approved for funding to the HSE – when a person reached a certain stage in the disease’s progression. Staunton’s “problem” was that, initially, she was not sick enough even with a stage 3 cancer but when her condition worsened to stage four, they could be used.
“At that point, they were only reimbursed for stage 4 disease in this country and not at stage 3. So, yes, I wasn’t sick enough,” she says
“Basically, you try to live your life, but you have that hanging over you. So, you know, every three months you go to be scanned to see have you progressed, have you not progressed and you’re just waiting for the axe to fall, so to speak.”
Eventually, Staunton was able to access a combination immunotherapy that, she says, has been a game changer in the treatment of melanoma.
“It works for about 50 per cent of people in my situation. And I was in that lucky half. So, I am now almost six years on from my diagnosis. I am currently awaiting CT results but currently I have no evidence of disease.”
The experience turned Staunton into a patient advocate. With so much on her own plate, why did she do so?
“When you’re the patient sitting in the seat and you’ve got a life-changing diagnosis, you’re not really in a position. It’s very, very difficult to try to advocate for yourself, because that’s when you’re at your most vulnerable, your lowest day, and you’re just trying to figure out how you’re going to tell your children or how you’re actually going to manage,” Staunton says.
“Now that I am well and I have the time and energy, I feel that it’s my duty to advocate for other patients in my situation.”
Staunton now works with Cancer Trials Ireland to help improve access to clinical trials. She also sits on the Cancer Patient Advisory Committee with the Department of Health.
“I’m also working to set up a network of cancer advocates because, traditionally, we’ve been advocating for our own disease. And now we are looking to advocate across the cancer community in total,” Staunton says.
“It shouldn’t be a situation of begging for compassionate access or ringing Joe Duffy to make noise about it or having to do a social media campaign as to why I can’t access this. It is unfair and inequitable.
“When a drug has gone through all the hoops of clinical trials and getting EMA [European Medicines Agency] approval, which is not easy to do, to then be waiting two years to access it here is crazy.
She noted some people are fortunate to have doctors who advocate strongly on their behalf to secure “compassionate access” to drugs not generally available.
“There are other patients who have not made it. You can be sure that there’s plenty that didn’t have an oncologist advocating for them to get the drugs and they’re not here,” Staunton says.
“As someone I do a lot of work with says: ‘Dead people don’t post on social media.’ They’re not ringing Joe Duffy.
“They haven’t had the drugs, they weren’t able to advocate for themselves for whatever reason and they have died. And it’s inequitable and it is immoral.”
