Priscilla Lynch examines the rise of crowdfunding for medical treatment abroad and increasing calls for Government intervention to protect patients
“Please help. Our child/sister/dad/friend, etc was diagnosed with x disease and we need to raise x amount for an experimental treatment abroad that could cure them, as the HSE does not provide this treatment in Ireland… ”
Appeals along the basic lines of the example above have become a regular feature in regional and national media, on social media shared posts and on local posters across Ireland. The phenomenon of ‘crowdfunding’ for medical treatment has burgeoned rapidly across the world, including Ireland in recent years. While crowdfunding is used for legitimate reasons for people who need healthcare treatment while abroad, or help with rehabilitation or other essential healthcare-related costs not covered in their home countries, the possibility of fraud, both on behalf of fundraisers and services offering potentially fake and unproven treatments, is causing increasing concern among the medical profession in Ireland.
As well as local fundraising initiatives to raise large amounts of money, people are increasingly using online crowdfunding platforms such as gofundme.com and justgiving.com, which take a percentage of funds donated, to raise money — typically very large amounts in the tens or hundreds of thousands of euro — for the treatments sought.
Crowdfunding essentially raises serious questions about how the benefits and risks of certain treatments are depicted in appeals for money. While media articles frequently highlight fundraising efforts for heart-rending medical cases, there is little follow-up coverage of cases where patients have died before they could receive the sought ‘miracle’ treatment, have died during or after treatment, with even less reporting on what happens to cash raised in such circumstances and whether the treatments only benefited the patients to some degree or none at all.
However, last November, RTÉ’s Prime Time broadcast a dedicated TV programme about those with first-hand experience of travelling to foreign clinics offering alternative and experimental treatments to terminally-ill cancer patients. The programme highlighted the huge sums of money being sought for treatments that did not have any proven clinical benefit and the risks such clinics posed to patients. While the programme generated significant interest, such fundraising appeals continue unabated.
Medical professionals and patient advocates, particularly in the field of oncology, are now calling for national and international intervention to tackle this worrying trend and protect patients from the risks involved. Specialists who spoke to the Medical Independent (MI) for this article said they felt powerless to protect their patients, particularly those who are terminally-ill and young children, from being preyed upon by foreign clinics touting very expensive pseudoscientific treatments as ‘miracle’ cures.
Speaking to MI, Dr Brian Creedon, a Consultant in Palliative Care Medicine and HSE National Clinical Lead for Palliative Care, voiced concern about the issue, saying he was aware of treatments with no evidence base being promoted to cancer patients by clinics in Romania, Poland and Germany.
Dr Creedon, who looks after people with advanced illness, said he understood the trauma involved with a terminal diagnosis of cancer or other serious illness and that the primary intention of people fundraising for these treatments was good. However, he said that during his career he had come across cases where seriously ill patients undertaking unproven treatments abroad had died earlier than they should have, far away from their loved ones.
He added that the rise in these crowdfunding campaigns was creating a narrative among the public that cancer treatment in Ireland was not very good and was undermining trust in the medical system, when his experience of also working in the US and Canada was that Ireland was one of the best countries in the world in regards to the quality of its public cancer services and the availability of the latest validated treatments.
Growing issue
A number of studies on the risks of crowdfunding for medical treatments have been published in high-impact medical journals in recent months.
One study, published in JAMA last October, examined crowdfunding activity for five unproven and potentially unsafe treatments across a two-year period and identified more than 1,000 campaigns that raised nearly $6.8 million. The campaigns collected money for homeopathic or naturopathic cancer treatments, hyperbaric oxygen therapy (HBOT) for brain injury, stem cell therapies for brain and spinal cord injury, and long-term antibiotic therapy for chronic Lyme disease. The most money was raised by the 474 campaigns collecting funds for homeopathic or naturopathic cancer treatments, at $3,464,871. The clinics providing these treatments were primarily based in Germany and Mexico for homeopathic or naturopathic cancer treatments, a US clinic offering HBOT for brain injury, and in the US, Panama, Thailand, India, China, and Mexico for stem cell therapies.
“These results reveal that a wide scope of campaigns for unsupported, ineffective, or potentially dangerous treatments are moderately successful in obtaining funding. Assuming that the funds raised are spent to pay for these treatments, donors indirectly contributed millions of dollars to practitioners to deliver dubious, possibly unsafe care,” the study authors wrote.
A separate study published in The Lancet Oncology in January looked at the use of crowdfunding for unproven alternative cancer treatments, identifying 220 campaigns from searching gofundme.com. The majority of campaigns, 186 (85 per cent), were located in the US, 23 (10 per cent) in Canada, eight (4 per cent) in the UK, and one each in Germany, Ireland, and Spain. They sought a total of $5,795,602, and were pledged $1,413,482 (24 per cent of the total requested) by 13,621 donors. Campaign recipients were a very ill group, as evidenced by the fact that at least 62 (28 per cent) had died following the start of their campaigns.
In addition to self-described homeopathic treatments, campaigners sought a range of other unproven cancer treatments, including dietary changes, such as juicing and organic foods; vitamins, and herbal remedies; vitamin C infusions; oxygen, ozone, and hyperbaric treatments; acupuncture; and cannabis-based treatments. Other examples included: Ayurveda; yoga and meditation; light, ultraviolet, and infrared treatments; and chiropractic treatments.
Over a third of individuals (n=83, 38 per cent) used alternative treatments as complementary to traditional treatment. They wanted to try “every treatment method available”, often seeing homeopathic treatments as something that would “enhance” traditional treatments. More worryingly, 63 (29 per cent) of 220 campaigns were for individuals who chose to forgo traditional treatment because of a fear of its effects or scepticism about activity. They often felt alternative treatments were a more natural alternative to “synthetic medicines”. Individuals who could not pursue traditional treatment for claimed financial or medical reasons comprised 69 (31 per cent) of the campaigns. A characteristic example of one of these campaigns included one recipient who saw alternative treatment as their “last and only hope”.
A total of 63 (29 per cent) campaigns cited in The Lancet Oncology article made unsubstantiated, positive claims about the activity of these treatments. These included personal anecdotes (“thus far, he’s been immersed in cancer-fighting foods, supplements, herbs, etc… we believe this is why the tumour growth has slowed, and not spread”) and sweeping activity statements (“homeopathic/naturopathic medicine has been proven to have outstanding healing results and a lot of patients are still able to live their lives because of it”). Only two (1 per cent) campaigns acknowledged the uncertain activity of these treatments.
In light of their findings, the study authors said there should be concern that crowdfunding has the potential to exacerbate existing and create new problems within the market for alternative cancer treatments. “Oncologists and other medical practitioners should be prepared to discuss these concerns with their patients. Cancer research agencies and patient support groups could raise the profile of these issues with public statements of concern around the role of crowdfunding in encouraging the use of unproven cancer treatments. Partnerships with crowdfunding platforms should also be sought to combat the worst forms of harm and misinformation transmitted via these campaigns.”
Speaking to MI, cancer researcher and physicist Dr David Robert Grimes (Phd), who regularly debunks anti-vaccination propaganda and pseudoscience in the media and online, raised concerns about the continuing rise of crowdfunding for dubious cancer treatments and the lack of a HSE response to warn patients about the risks involved.
“These charlatans commercialise hope and sometimes they commercialise false hope. The first thing a person does when they or someone they love are diagnosed with something serious is go to Google and look it up, and they [charlatans] know this. You are already at a disadvantage as you are vulnerable and really care about the person you are looking for help for, so you are in a very vulnerable position to being exploited. And while people who set up these campaigns mean well and are trying to help, we need to get the message out there that the people hawking this stuff to them are exploiting them, their generosity and their essential human kindness to profiteer off their misery.”
He pointed out that “Germany has the most scam clinics in Europe”, which he said dates back to the non-regulated alternative healthcare industry being allowed to flourish after the second World War. “They pitch themselves to other European countries and the US, where there is a market for crowdsourcing… In Ireland, we don’t have that situation; the majority of legitimate proven treatments are available to Irish patients, so these clinics are abroad and attracting Irish people to them.”
Dr Grimes noted that while stem cell treatments have huge potential, they can be incredibly unpredictable and what is being offered to patients in some clinics as miracle cures are mixing genuine science with unregulated and unproven, potentially very dangerous approaches.
“So anyone offering commercial stem cell therapy right now is a huckster. There are clinics in Mexico in particular, the US and Germany offering what they describe as experimental treatments, yet they charge an arm and a leg for them. People don’t realise if you are participating in a genuine clinical trial for the benefit of science, you shouldn’t be out of pocket, unlike what is being claimed in some fundraising campaigns for amounts of, say, €200,000. That is not a clinical trial; it is a commercial transaction. And what is very hard, and I have written about this before, is that one of the things I find happens if you point this out is, you come up against a siege mentality and become a figure of hate.”
Dr Grimes cited the example of a crowdfunding campaign for huge sums of money, in the region of €500,000, for ‘chronic Lyme disease’ treatment in the US, where he said that by raising concern about what he believed was a dubious, exploitative service, he received a large backlash and had his motivations questioned.
Dr Grimes noted that patients and their families are also supplementing their fundraising efforts with their savings and remortgaging their houses, and are being left in dire financial circumstances after these ‘miracle’ treatments have failed. In addition, many of the clinics depend on patient testimonials on their websites to attract new customers, when often these patients have died in the meantime and some families are left battling to get references to their deceased loved one removed from the clinic’s advertising materials.
To tackle the problem, Dr Grimes believes that there needs to be a co-ordinated multi-country effort, which would include the EU bringing in legislation to compel “anyone providing medical treatment to prove that it is validated and regulated”.
“I also believe the crowdfunding websites need to step up, but I don’t believe they will do that as it is their business model, and the incentive is there for them to keep this stuff going. What we can do in a more immediate timeframe, because legislation takes forever, is educate people; teach them the basic tenets of scepticism, to make them question claims and ask for evidence to back things up. People don’t naturally know how to do this; they need a bit of training.”
In addition, he said there needs to be better management of patients’ expectations around terminal illness, as those seeking a miracle cure are being led to believe it exists by predatory clinics, when palliative care would offer a much better quality-of-life experience and often a longer life outcome for the patient compared to some of the gruelling quack treatments in clinics far away from their loved ones.
Speaking to MI, Mr Donal Buggy, Head of Services and Advocacy, Irish Cancer Society, agreed that the Society is concerned about patients being potentially exploited by clinics offering unproven, potentially dangerous treatments abroad. While the Society respects the right of patients to do what they feel is best, he said when the Society is approached by patients with queries on treatments abroad, it endeavours to provide them with factual information and points out that Ireland has generally very good access to the latest treatments and that legitimate clinical trials can be availed of for many conditions, which their treating physician should know about.
Anti-quackery bill
One specific attempt in Ireland to deal with the risks of dubious cancer treatments is the Treatment of Cancer (Advertising) Bill, currently making its way through the Oireachtas, drafted by Fine Gael TD and pharmacist Ms Kate O’Connell. It is designed to protect cancer patients and their families from false hope offered by predatory unregulated clinics and alternative ‘quack’ practitioners.
Essentially, the Bill provides for the banning of advertisements that offer to treat or provide a remedy for cancer, or that suggest that a medical consultation, diagnosis, treatment, or surgery is unnecessary for the treatment of cancer. The prohibition falls under the remit of the Health Products Regulatory Authority and the Bill provides that contravention of its provisions is an offence subject to fines and/or imprisonment, as decided by the courts. The Bill has the support of the Irish Cancer Society, the Irish Association for Nurses in Oncology, the Irish Nutrition and Dietetic Institute, and the RCPI.
Speaking to MI, the Dublin Bay South TD said those who support and treat cancer patients “have seen at first-hand how the legislative void in our laws can be filled by unscrupulous individuals touting falsehoods and dangerous lies to make a quick buck”.
“Cancer treatments are improving all the time, outcomes are getting better and people are living longer, and in Ireland we have very good access to the latest proven treatments, often better in my experience than in the NHS,” commented Deputy O’Connell. “But with those improved outcomes, a lot of people think everything can be cured and a lot of unscrupulous people come into that ‘everything is curable’ market offering cures where conventional medicine has reached its limits… There is also a narrative out there that ‘you won’t get it in Ireland’ and I think we have to stand up for our health service, as we have a very, very good established cancer programme in Ireland, so we need to advertise that we are a good country in terms of access to treatment and that we have other funding mechanisms for treatment abroad for legitimate treatments not available here [Treatment Abroad Scheme and European Cross-Border Healthcare Directive].”
She raised particular concerns about crowdfunding for medical treatment for seriously ill children and asked who was protecting them from being exposed to potentially dangerous treatments and being put through painful procedures that may have harmful outcomes.
Deputy O’Connell said while it is natural that communities mobilise around people seeking these ‘miracle cures’ abroad, believing they are only being helpful, there have been tragic cases “where people’s deaths have been accelerated, their limited time has been cut short and their deaths have been more painful than they needed to be”.
“So it is a difficult one, as people do crowdfund for legitimate treatment abroad and I wouldn’t like to see a situation where there was a tested treatment in a legitimate trial showing good results where somebody, perhaps even on medical advice, wants to try that. I don’t want to see that stopped and people have a right to go about their own business, but there is an education issue here; my Bill highlights this. But we really need oncologists and neurologists, the medical experts, to come out and really hammer home the message publicly that this is not always a good thing, and I know that is not always easy. Again, it is very hard to see the poster in the pub seeking money but people need to stop and ask if this is a legitimate treatment and ‘should I be going online and giving a tenner?’ People like to give to charity and like to help, but I have also heard of cases which are fraudulent and the story is completely fabricated and it is very easy to do that online. In terms of governance and where that money goes, there are also issues there.”
She noted that gofundme.com had recently banned anti-vaccine related campaigns and propaganda and called on crowdfunding platforms to do the same for unproven and dangerous medical treatments.
HSE and DoH response
MI asked the HSE if it had any plans to tackle the rise in crowdfunding for unproven medical treatments abroad.
It pointed out that its Treatment Abroad Scheme allows public patients to access public healthcare in another EU/EEA country or Switzerland, which is not available in Ireland. “This is specifically designed to allow patients access to very specialised healthcare which is not available in Ireland (ie, proton beam therapy for cancer, deep-brain stimulation for movement disorders, etc).”
The Cross-Border Healthcare Directive scheme also allows patients to access healthcare abroad in another EU/EEA country, in the case of treatment which they would be entitled to as public patients in Ireland. These can be for treatments available in Ireland but for which there is a waiting list. The patient pays up-front for the treatment and claims reimbursement upon return to Ireland. Reimbursement is at the cost of the treatment abroad or the cost of the treatment in Ireland (whichever is the lesser).
“The above demonstrates that in general, the costs of necessary healthcare is either fully covered or covered on a reimbursement basis for public patients within Europe. There are rarely cases which require referral outside of Europe and discretion is available to allow funded or partially-funded access in such cases where it can be demonstrated that the treatment in question is demonstrably not available in Europe and medically necessary,” a HSE spokesperson said.
“The HSE does not get involved in individual cases and we do not comment on such fund-raising mechanisms,” the spokesperson added.
MI also asked the Department of Health if it had any plans to address the rise of crowdfunding for potentially dubious and dangerous treatments. It did not directly answer the question, but issued a statement saying: “Much progress in cancer care is being made through the continued implementation of the National Cancer Strategy 2017-2026 and the previous two cancer strategies. Outcomes for those diagnosed with cancer are improving, with five-year net survival rates for some cancers now above 80 per cent.
“The National Cancer Strategy 2017-2026 provides a roadmap which will govern the provision of cancer services in Ireland over the lifetime of the strategy. The focus of the strategy is on preventing cancer across our population; diagnosing cancer early; providing optimal care to patients; and maximising their quality-of-life. The continued implementation of the strategy will drive improvements in the provision of cancer services and aims to ensure that survival rates in Ireland continue to improve such that Irish survival rates will reach the top quartile in Europe. In achieving this, we must also ensure that our services meet the needs of those living with and beyond cancer, from diagnosis and treatment to psycho-social support post-treatment.”
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