Wednesday 26 June 2019

'We don't have enough funding to open a trial for a relatively promising drug' - Why aren't more Irish patients on clinical trials?

Experimental drugs are an essential part of cancer research, but lack of government funding means that the interests of the pharmaceutical industry dominate. Ailin Quinlan reports

Con Wilson went on a trial for a drug that is used to treat renal cancers. Photo: Frank McGrath
Con Wilson went on a trial for a drug that is used to treat renal cancers. Photo: Frank McGrath

Lack of State funding has prevented research into a promising new drug for pancreatic cancer, one of the country's foremost experts has warned.

Funding cuts of €3 million - around 20pc of its budget - imposed on Department of Health financial support to Cancer Trials Ireland in 2016 has led to significant "difficulties" in the body's ability to open crucial drug trials.

That's according to Professor Bryan Hennessy, Consultant Medical Oncologist at Beaumont Hospital, and Clinical Lead of Cancer Trials Ireland, the leading clinical trials organisation in Ireland.

Prof Hennessy said that while funding continues to be received from the private sector for cancer trials with promising drugs in which the industry is interested, continued strong government funding is crucial to the organisation's ability to carry out important research into cancers which are not as common, such as pancreatic cancer.

"The government funding we get is for trials that are not necessarily of interest to industry, as they involve cancers that are not so common," he said.

"Academic trials are there to ensure that patients, populations and treatments that are not a priority for industry are not left behind. But these are the trials that we're not able to get the funding to open."

Prof Hennessy revealed that he was currently trying to open a cancer trial for patients with advanced pancreatic cancer.

"This is one of the most deadly cancers, but it's not as common as, say, breast, lung or bowel cancer, but for most patients who are diagnosed, the consequences are extremely serious, with a prognosis that that can be measured in months in many cases. I'm trying to open a new trial for advanced pancreatic cancer with a new drug that is relatively promising, but we don't have enough funding to open it at the moment."

In fact, he said, due to the 20pc cut imposed in 2016 on the grant it annually receives from the Department of Health, Cancer Trials Ireland has been unable to open trials in disease areas such as lymphoma, testicular and endometrial cancer, which means people with these kinds of cancers cannot access the latest promising treatments.

"At a policy level, it makes no sense to starve an area of research that can offer people with cancer a lifeline when cancer rates are doubling."

One in two people in Ireland will develop cancer during their lifetime, he warned.

In some countries, the proportion of cancer patients on drug trials is as high as 10pc, but in Ireland, as a result of these continuing cuts, he said, the number of cancer patients joining the trials each year is falling. "In 2014, before the cuts in 2016 took effect, 3pc of people in Ireland with cancer were on a cancer drug trial. Last year, it was halved to 1.5pc.

"Yet the experts responsible for putting together the new National Cancer Strategy felt we should see the figure of 3pc doubled to 6pc."

CTI currently has around 80 trials ongoing through an independent network of 16 hospitals across the country. A further 50 trials are in the data collection and analysis stage.

At any one time, it's estimated 6,000 people are participating in the free trials. Trials are currently ongoing in breast, skin, lung, genitourinary, head and neck, central nervous system, gastrointestinal, gynaecological and other forms of cancer. Since 1996, more than 15,000 people in Ireland have participated in 350 cancer trials.

Father-of-two Con Wilson, who has been diagnosed with renal cancer, is currently on a trial for an immunotherapy drug at St Vincent's Hospital, Dublin, which is having a positive effect on his cancer treatment.

"When I was initially offered a trial in 2011, I did some research into clinical trials and my attitude was that it was an opportunity and that I was more than willing to go for it," said the 56-year-old Celbridge resident.

"When an opportunity came up to go on a trial last year, I had the same thoughts about it - I was more than willing to go on the trial. I have seen a lot of people going on trial and they say it's a great opportunity. I believe that you're offered a trial where there is a potential for positive benefit," said Con, who recalls how his GP sent him for tests after finding blood in his urine.

During his exam, the ultrasound technician was in the middle of speaking when he suddenly stopped talking - Con says this is when he knew something was wrong. He was sent for a CT scan and was told a sizeable tumour had been found on his right kidney.

Two weeks later, Con was referred to Tallaght Hospital and the tumour was removed. He was out of hospital within three or four days and back at work at the engineering consultancy firm in which he is a senior associate within three weeks. Due to the size of the tumour, and the risk of recurrence, his urologists advised that it would be worth meeting with an oncologist. The specialist suggested the possibility of a trial drug. After carrying out his own research on the statistics of people who go on cancer trials, Con agreed.

"This drug was in existence for the treatment of cancer, but they wanted to see if it would work on someone who had surgery for a tumour and who had a high risk of it re-occurring," he recalls.

Alas, however, the trial in question required the drug to be administered within a specific period following the operation and, unfortunately, it was just slightly too late.

In the winter of 2010, Con got the all-clear when went for his six-month check-up. However, on the 12-month scan which took place the following Spring in 2011, the radiographer spotted further tumours in the area where his kidney had been.

Once again Con was referred to his oncologist. This time, he was put on the very drug he had previously been planning to trial. However this time round, he was taking it because he had tumours - the drug in question was the first-line therapy for renal cancers at the time.

Since November of last year, Con has also been participating in a trial for an immunotherapy drug.

"I have had a number of scans and the results are not conclusive, but I am continuing on the drug trial," explains Con, who continues to have a good quality of life on the trial. He travels extensively around the country for his job and enjoys exercising, fishing, cycling and mountain biking. And at the time of the interview with Health & Living, Con was looking forward to a very important family event - the wedding of his 29-year-old daughter Keira.

Cancer Trials Ireland's 'Just Ask Your Team' campaign aims to raise awareness of the people who contribute to cancer trials in Ireland, and to encourage those with cancer, their family and friends to ask their local team about a trial that might be suitable for them. For further information on cancer trials in Ireland, talk to your cancer team, visit cancertrials.ie or follow the conversation on Twitter @cancertrials_ie.

Retired Aer Lingus ground-crew member Ann Baker was diagnosed with lung cancer in 2016, after experiencing severe pain in her shoulder.

"It was a bad pain, which started one night in my right shoulder, at the top of my arm," says the Limerick city resident (73).

Ann's doctor sent her for a chest x-ray which showed a tumour on her right lung. After further tests, doctors decided that the best course of action for Ann was to undergo a lobectomy, an operation which involves the removal of part of the lung. It was then discovered that the cancer had spread to the pleura, which are thin membranes covering the outside of the lungs. Ann was referred to another oncologist who informed her that her cancer was very advanced.

Because her cancer was Stage Four, and had spread, Ann was informed, her oncologist didn't think the conventional treatment of chemotherapy would be suitable. The specialist suggested that Ann consider the possibility of a cancer trial drug.

However while Ann was pondering whether to follow her consultant's advice, she experienced double vision. She already had the eye condition macular degeneration, and initially put the double vision down to that. However she took the precaution of visiting her eye specialist who recommended a brain scan - which threw up a shocking result.

"It was discovered that I had a tiny tumour on the brain," recalls Ann. When she told her oncologist that she was willing to participate in a cancer drug trial, she was advised that before she could go on the trial drug, she needed to have radiotherapy for her brain tumour.

Ann had the radiotherapy and began the trial drug in January 2017 and although she felt ill occasionally, it went well for several months.

"I occasionally felt a bit nauseous but nothing major," she recalls, however, by the end of 2017 more negative effects began to show and her doctors decided that this particular course of treatment was not the right one for her. However, Ann emphasises, she continues to enjoy the benefits of participating in the trial:

"I was on the drug for 13 months, but stopped taking it last spring.

"I'd encourage anyone to go on a drug trial because you are looked after so well.

"Even though I have stopped taking the drug they are continuing to monitor my progress.

"I'd have no hesitation going on another trial," says Ann.

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