One of the Lucky Ones – MMI Pat Gately interview

MMI Patient and Family Day Report 2019: Living longer with multiple myeloma

Danielle Barron speaks to a patient who has benefitted from the daratumumab combination treatment

“In November 2015 I was lifting something and got a very sharp pain in my back.” Originally misdiagnosed – as is often the case – as a bulging disc, primary school principal Pat Gately spent months receiving physiotherapy for the purported injury. Yet as months passed, the pain did not subside, and was in fact worsening with Pat becoming increasingly uncomfortable.

An MRI scan eventually confirmed that Pat had kidney cancer; it was believed it has spread to his spine, causing the collapse of two vertebrae. While this would certainly explain the pain he was in, further tests including a bone marrow biopsy upon his admission to hospital would clarify that the spinal pain was as a result of a second, entirely separate cancer – multiple myeloma.
Pat commenced standard treatment for multiple myeloma, which involved a combination of steroids and chemotherapy tablets. He also had to wear a restrictive brace, in a bid to prevent further damage to his by now quite fragile vertebrae. This was followed by surgery to remove his kidney.

“Luckily enough, the kidney cancer hadn’t in fact spread – I didn’t have to have any further treatment and was given the all clear from that.”

Meanwhile, however, the multiple myeloma treatment plateaued, and Pat’s treating consultant explained that he was no longer benefiting from his current regimen. He was started on the daratumumab combination in January 2017 as part of the Early Access Programme and the benefit was instant as Pat’s paraprotein levels – markers of multiple myeloma in the blood – began decreasing.

“Almost immediately my paraprotein levels began to go down – they were originally in the fifties, which is quite high, but over the course of a year or so they continuously reduced until they were at negligible levels, so they are now zero and have been that for quite some time,” he explains. “Officially I am in remission now, but I am still on treatment and continuing on the maintenance programme, which involves an infusion once a month, as well as tablets for the chemotherapy portion.”

Despite the effectiveness of this regime, it has not been approved by the HSE for reimbursement in this setting, meaning many multiple myeloma patients whose disease would benefit from it much like Pat has cannot access it. Furthermore, patients in most other countries across Europe can avail of the drug combination. A recent letter to The Irish Times signed by three consultant haematologists highlighted the unfairness of this situation.

The inherent inequality of the current system where some Irish multiple myeloma patients can access the therapy – in certain instances it is covered by private health insurance – while others cannot, is not lost on Pat.

“In many ways, I feel guilty that I was one of the lucky ones able to access it – I was just in the right place at the right time. Daratumumab as a stand-alone treatment is approved so it’s not that the HSE isn’t aware of its effectiveness but they just aren’t prepared to meet the cost of the combination regimen. It’s no exaggeration to say that these are life-saving treatments that we are being denied by Government/HSE policy.”

Pat is effusive about the difference the daratumumab combination has made to his prognosis and everyday quality of life.

“I had hoped to go back to work but eventually we realised that wouldn’t be possible and that’s mainly because of the damage done to my back before the diagnosis, it restricts me physically. But I can drive, I do plenty of walking and I can lift things within reason. My spine has stabilised and now only have to wear a very light brace,” he explains. “All of this is only possible because of treatment. Since I have been on it, everything has stabilised – before that, everything was up in the air, physically, mentally, in every way. Once I realised that this treatment was working, that was such a boost for me mentally, as well as everything else.

“When I was diagnosed, I was 51, working full-time with a relatively young family of three children. I was healthy and reasonably fit, but my life was turned upside down. I went from coming to terms with the fact that I had a terminal illness, to learning that there is a treatment available and then appreciating that it was working for me. If I was looking at a situation where I knew this treatment would benefit me, but I wouldn’t be able to have it, that would be very difficult for me to swallow yet people have to do just that.”