| 4.8°C Dublin

'Worrying' Doctors reveal 'significant concerns' about crowdfunding for unlicensed cancer treatments

Significant’ fears raised about therapies overseas and patients risking ‘fraud and dishonesty’

Close

Doctors have warned patients to 'trust their oncologists'. Picture by Xaume Olleros/Bloomberg

Doctors have warned patients to 'trust their oncologists'. Picture by Xaume Olleros/Bloomberg

Doctors have warned patients to 'trust their oncologists'. Picture by Xaume Olleros/Bloomberg

A “worrying” proportion of crowdfunding appeals are for cancer patients trying to raise money for unlicensed or alternative treatments, a study has found.

Doctors who examined 150 fundraising campaigns over three months found a large proportion were from people trying to finance immunotherapy treatments for cancers for which they were not licensed.

The study by oncologists at Cork University Hospital said this was a “significant concern” to health professionals.

The paper also raised concerns that crowdfunding encourages “queue jumping”, promotes medical tourism and raises the “very real risk” of “fraud and dishonesty."

Cancer patients are increasingly using crowdfunding sites like GoFundMe to finance treatments that are not covered by the health care system or not licensed here.

Dr Shahid Iqbal, a medical oncology registrar, launched the study after noting patients in his practice had received crowdfunding donations for “unproven drugs”.

“The desire to save loved ones when their lives are in danger is innate,” Dr Iqbal said.

“This desire is even higher when they are suffering from an advanced cancer which is incurable with the standard available treatment options.”

Patients and their families in search of cancer cures in other countries take on an enormous risk and financial burden, he said, adding: “It is very important to trust your oncologist.”

The study, co-authored by consultant medical oncologist Dr Dearbhaile Collins, examined 150 GoFundMe webpages outside of the US over three months from November 2019 to January last year.

Three quarters of the requests examined were from Ireland and the UK. A quarter were looking for financial support for cancer patients.

The study found the three main cancers people were hoping to raise funds to treat were brain cancer, followed by breast and ovarian.

Sunday World Newsletter

Sign up for the latest news and updates

This field is required This field is required

A fifth of the funding appeals were for immunotherapy treatments and 19pc were looking to finance alternative therapies.

Another 12pc of people were looking for funding for anti-cancer drugs that weren’t approved by health systems in their own countries but approved elsewhere.

The sums being sought ranged from €1,171 to €588,759. The largest amount of money requested was for immunotherapy treatments, with a median appeal of €187,064.

The top six cancers listed in requests for immunotherapy treatment were brain, bone, colorectal, ovarian and pancreatic. However, the study noted there were no licensed immunotherapy drugs, outside of clinical trials, for those cancers.

One young man with osteosarcoma was trying to raise €200,000 for experimental treatment in China, according to the study.

A family of a child with medulloblastoma, a type of brain cancer, were crowdfunding for an experimental cancer therapy “with no published evidence of efficacy”.

Of those looking for alternative cancer treatments, most were seeking treatment in German clinics, along with the USA, Mexico and Turkey.

“The possibility of fraud, both on behalf of fundraisers, and the services offering unproven or potentially unsafe treatments, is causing concern among healthcare professionals,” the study said.

Its authors called for regulation of crowdfunding platforms. The media was criticised for frequently highlighting cancer fundraising campaigns, but providing little follow-up on the success or toxicity of the treatments.

The Irish Cancer Society said it can be hard for cancer patients to navigate the vast amount of information that exists around cancer treatments, to understand the benefits, what is safe and what risks are involved.

It urged those faced with a cancer diagnosis to contact the Irish Cancer Society to talk through treatment with one of its specialist nurses.

“Our nurses can provide one-to-one support and talk through the options people are considering,” a spokesperson said.

"We urge anyone who is planning or who has had an anti-cancer therapy outside of the recommendation from their Irish clinical team, to call us on 1800 200 700 for non-judgmental advice.”

Crowdfunding is currently unregulated in Ireland but EU rules are due to come into effect next month. However, the rules are aimed at facilitating investors and businesses fundraising for commercial ventures across the EU.

Download the Sunday World app

Now download the free app for all the latest Sunday World News, Crime, Irish Showbiz and Sport. Available on Apple and Android devices


Top Videos





Privacy