A new study has found that a large proportion of online crowdfunding for cancer treatment is for unlicensed or for alternative treatments.

A Cork oncologist who carried out the research said the findings are worrying for cancer patients - and doctors treating them.

The study looked at 150 online crowdfunding appeals, which were set up outside of the US between November 2019 and January 2020.

Three quarters of the appeals were from the UK and Ireland. Of the appeals, 19% were looking to finance alternative therapies, 12% were looking for funding for anti-cancer drugs that were not approved in their own countries but were approved elsewhere and one fifth were looking for funding for immunotherapy treatment where there was no licensed drugs outside of clinical trials.

One of the reports authors, Dr Dearbhaile Collins, Consultant Medical Oncologist, Cork University Hospital, and senior lecturer in cancer research at University College Cork said the findings are worrying.

Dr Derbhaile Collins

"What worries us the most is that patients are not having conversations with their oncologists about this treatment.

"They don't understand the impact that this may have on their care, and also that they might be not going down a standard cancer treatment route. They might be deciding to go against that choosing alternative pathways, and that may not always be the right thing to do."

She said while many people who makes crowdfunding appeals do so in good faith and for legitimate supports, she said the organisations running these sites should have a role in checking the legitimacy of the treatments that people are appealing for support for.

"Some of these crowdfunding web pages are for real needs for patients that are in financial need. They may need to go away for specialised treatments for clinical trials, and these are potential cancer avenues that we would support.

"However, it's the other aspects of it, and it's difficult sometimes to decipher what is a real need and what is something that is potentially even a risk to the patient who's pursuing that line of treatment.

"So I think the onus should fall on the crowdfunding pages themselves, the organisations that look after these pages in order to try and better regulate and better control what pages are able to be set up so that when generous people are offering money in order to support really vulnerable cancer patients that that money is going towards something that's actually helpful," said Dr Collins.

Cancer researcher Dr David Robert Grimes said the problem of crowdfunding for questionable treatments is widespread and that some clinics are deliberately setting out to exploit vulnerable people.

Dr David Robert Grimes

"if there are treatments that are available abroad and not here and they are evidence based, the HSE does allow patients to travel and it has a whole mechanism for that.

"In fact that happens for a lot of conventional cancer treatments like proton therapy which we don't have here but you can get abroad.

"A big red flag would be a foreign clinic that there is no link between the HSE and it, that should be something that rings alarm bells because often that is something that is not based in good science and good medicine, and could actually be doing harm to patients and their wallets as well."

The Irish Cancer Society said it can be difficult to navigate the vast amounts of information that is out about cancer treatments and their risks and benefits.

It said anyone considering therapy outside of the recommendations of their Irish clinical team should contact The Cancer Society for advice which, it says, will be non judgmental.