Crowdfunding sites are helping people with advanced cancer spend thousands of pounds on unproved and alternative treatments. Melanie Newman examines calls to help ensure patients and their donors are not being exploited
Doctors face difficult conversations with patients with metastatic cancer for whom NHS treatment has failed. A growing problem is how to advise patients who opt to pursue expensive, experimental treatments in the private sector, including orthodox therapies given in unproved combinations and doses but also alternative therapies with no evidence behind their use. The BMJ today publishes figures that show how crowdfunding for alternative cancer therapies has soared in recent years (tables 1 and 2). The figures, collected by the Good Thinking Society, a charity that promotes scientific thinking, show that since 2012 appeals on UK crowdfunding sites for cancer treatment with an alternative health element have raised £8m (€9m; $10m). Most of this was for treatment abroad.
Total raised by GoFundMe and JustGiving by country of clinic or treatment up to 1 July 2018
Amount raised by date fundraiser was opened
JustGiving’s own figures show more than 2300 UK cancer related appeals were set up on its site in 2016, a sevenfold rise on the number for 2015.
The phenomenon has allowed less well-off patients to access expensive, experimental treatments that are not funded by the NHS but have some evidence of benefit. But many fear it has also opened up a new and lucrative revenue stream for cranks, charlatans, and conmen who prey on the vulnerable.
The society’s project director, Michael Marshall, says: “We are concerned that so many UK patients are raising huge sums for treatments which are not evidence based and which in some cases may even do them harm.”
Hundreds of thousands of pounds have been crowdfunded for UK patients’ treatment at the controversial Burzynski clinicin Texas, which US authorities have pursued for years over its marketing of unproved treatment and research trial failings. The US Food and Drug Administration issued warning letters to the clinic in 2009 and 2013 listing numerous concerns about the clinic’s research trials, including failure to report adverse events.12 In 2012 the clinic was criticised by the FDA over violations of regulations relating to claims on the clinic’s website,3 and in 2017 the clinic’s owner was sanctioned by the Texas Medical Board for misleading clients.4
Other appeals included in the dataset were for Gerson therapy, which involves coffee enemas and frequent juice drinks and is not only unproved but can harm patients.5
“If these platforms want to continue to benefit from the goodwill of their users—and, indeed, to profit from the fees they charge each of their fundraisers—they have a responsibility to ensure that they do not facilitate the exploitation of vulnerable people,” Marshall said.
JustGiving charges a fee of 5% on donations, and GoFundMe did the same until January 2018, when it became fee-free.
Good Thinking wants the crowdfunding sites to vet cancer appeals and “reject outright proposals that refer to specific drugs that have been discredited, extreme dietary regimes, intravenous vitamin C, alkaline therapy and other alternative treatments.” Marshall says: “If a fundraiser is for treatment for a serious or life threatening condition such as cancer, it ought to be reviewed before it is sent live, especially if it contains terminology that raises red flags for quackery.”
Edzard Ernst, professor of complementary medicine at Exeter University, supports the move, pointing out that crowdfunding organisations already reject appeals involving violence or illegal activity. “Crowdfunding for a terror attack is out of the question,” he said. “Crowdfunding for cancer quackery is not any better and must be stopped.”
GoFundMe, the platform that features most prominently in Good Thinking’s dataset, said it is already “taking proactive steps” in the US to make sure users of its site are better informed and will be doing the same globally over the coming months.
“Ultimately, we'll be monitoring content of this kind more closely in order to provide tailored advice,” a spokesman said. But JustGiving told The BMJ, “We don’t believe we have the expertise to make a judgment on this.”
Any moves to limit fundraising for alternative therapies by patients with terminal cancer will attract the ire of people like Sarah Thorp. She set up a GoFundMe account to pay for her sister Andrea Kelly’s treatment at the Integrative Whole Health Clinic in Tijuana, Mexico. The clinic offers a range of alternative therapies, including coffee and flax seed enemas, vitamin and mineral infusions, and an “Alpha-2010 Spa System” alongside whole body hyperthermia, hyperbaric oxygen, and “extracorporeal photopheresis.”6
Its lead clinician, Jose Henrique, claims a “75% success rate” since 2000 in patients with stage 4 cancers like Andrea.7 Andrea spent three weeks at the clinic at a cost of $21 000 (£16 000; €18 000) and died just over a year after she returned.
Although the sisters became “disillusioned” with the clinic and ended the treatment a week early, Thorp tells The BMJ thatshe remains convinced the trip extended Andrea’s life. “It gave her hope at a point when we had none,” she says. Andrea’s faith in the NHS was damaged after she felt her concerns that the cancer had returned were repeatedly dismissed by her doctors. When the disease was finally detected Thorp claims her oncologist was unsympathetic.
She believes Andrea was helped as much by the feeling of being in control as by the treatments she received. “That empowerment was so useful,” she says. “That was not false hope.” The very process of searching for alternative therapies had a positive effect, Thorp believes. “She was always looking into new things; it kept her going. Doctors shouldn’t disregard or be pessimistic about people exploring these options.”
Working out how best to protect patients and donors—while supporting their informed choices—will be no simple task for the crowdfunding platforms, as David Gorski, a US surgical oncologist who campaigns for evidence based science, explains.
“I support the concept of not allowing crowdfunding for treatment at quack clinics but must admit that I struggle to see how it would work in practice for some of these centres,” he said. “How would they deal with clinics that offer conventional treatments alongside quackery?”
Alternative centres do not usually publish data on treatment efficacy but instead provide testimonials, in which patients often describe being given a short time to live before starting the treatment that “saved” them. “Patients often don’t understand that not enough time has passed to say with any confidence that they are survivors,” Gorski explains.
The largest sums by far in Good Thinking’s dataset, accounting for £4.7m of the £8m identified, were ostensibly raised for trips to the Hallwang Private Oncology Clinic in the Black Forest of southern Germany. The clinic claims that some people have used Hallwang’s name to raise money but have not then proceeded to treatment and, in some instances, have done so without ever contacting the clinic.
The Hallwang carries out diagnostic tests on patients’ tumours and treats them with a combination of experimental immunotherapy, peptide vaccines said to train the immune system to attack cancerous cells, and unproved therapies such as vitamin infusions.8 Drugs offered include bevacizumab, which inhibits growth of tumours’ blood vessels, and pembrolizumab and ipilimumab, two members of a new class of biological therapy known as checkpoint inhibitors. All three drugs have proved benefits for certain types of tumour.
Costs are high: a patient was recently quoted more than €100 000 for an initial 10 day visit.9 However, the clinic states it offers intensive treatment monitoring, with a nurse to patient ratio of 1:2, in a highly private setting and in extremely challenging situations. It says many of its patients arrive with serious complications such as sepsis, tumour associated bleeding, or bowel obstruction, which it treats and manages. It also says that its innovative treatments are purchased at a high price, and because the costs are not met by any third parties such as insurers or charities, they have to be paid by patients. It insists patients only pay for and are given treatments after thorough discussion and with the patients’ explicit approval and consent.
Christian Ottensmeier, professor in experimental cancer treatment at the University of Southampton, has been approached by and treated former Hallwang patients. He uses some of the same immunotherapy drugs prescribed at the Hallwang in his standard clinical practice but in different doses and combinations.
“In my experience 20-25% of the Hallwang’s patients with advanced cancer could see some benefit from taking them,” he says. The Hallwang also uses the drugs for diseases in which they have not yet been tested. “I don’t have a problem with that,” says Ottensmeier. “But it needs a careful conversation with the patient about the chances, the risk, and the costs.”
The Hallwang says that when referring to treatment outcomes, it is important to distinguish between partial and complete remission, and that in cases where life expectancy is only a few weeks or months, a gain in quality of life or being given a few extra months to live is considered a success and something that patients are happy with. The clinic does not publish survival rates.
Ottensmeier does not think Hallwang patients should be banned from crowdfunding pages but says that patients and their donors must be much better informed about what they are paying for. The fundraising sites suggest that some Hallwang patients have had exaggerated notions of their prospects of long term survival. Anastasia Leslie’s Buy Another Day GoFundMe page said she was told by the Hallwang that “all of the ovarian cancer patients (approx 20 to 25 per year in the last 15 years) … are still alive, doing well and in remission.” Despite apparently spending £100 000 in just one week10 at the clinic, her death was announced on the funding page within months of her first trip to Germany. Her appeal raised £155 000.
Rekha Banerji’s appeal for her daughter Rebecca, who had stage 4 breast cancer, said: “Although in the UK, this is a hopeless case, the German doctors are extremely confident Rebecca will gain full remission.”11 The appeal raised £14 645, but her daughter also died within months of starting treatment, according to her GoFundMe page.
The Hallwang maintains that it never gives guarantees to patients and always provides thorough information on its alternative treatment strategies, which it says are state of the art.
Ottensmeier also questions Hallwang’s prices. “For a much smaller sum you can buy the same immunotherapy drugs and have them administered in the UK,” he says.
Patricia Peat, a former oncology nurse who has advised people (box 1) to go to the Hallwang after visiting the clinic herself, says she has now stopped recommending it to her clients.
Sally Major had stage 4 bowel cancer diagnosed when she was 32, after her concerns were repeatedly dismissed by the NHS. The youngest of her four children was just 2 years old.
Sally and her husband, Liam, sought the advice of former oncology nurse Patricia Peat, who now runs Cancer Options, a Nottingham based consultancy that claims to help patients navigate alternative approaches to the disease. Peat recommended the Majors go to the Hallwang Private Oncology Clinic in Germany.
There was a catch though—the Hallwang was extraordinarily expensive. Peat advised it could cost around £80 000. Over the course of the next year, the family spent more than four times that: £350 000, Liam tells TheBMJ. They re-mortgaged their home, took out bank loans, sold their car, and set up an appeal on the crowdfunding site YouCaring.
As the year went by Liam’s pleas on the site and in the media, which covered Sally’s quest and the fundraising effort extensively, became increasingly desperate. “This week has cost us €26 000...our money has finally run out,” he said in a Mirror story in March 2017.12 “Sally can barely stand ... we’re not able to get her home. Equally we can’t afford to stay here so have no option. I am literally begging.”
A few weeks later Sally died while still under treatment at the Hallwang. Less than a year had passed since her first visit.
On Sally’s first visit to Germany in July 2016, Liam was taken aback by the Hallwang’s charges. “We spent around £1000 a day on top of the treatment costs,” he says. But the Hallwang advised that its staff had experience of his wife’s particular cancer and that they hoped to put her into remission, so he wasn’t going to argue over money. “They told us positive stories and never mentioned anyone who had died,” he says. “I did ask for figures on survival rates but was told patients did not want to share their data. If I wasn’t in a desperate situation I might have asked more questions.” He was also asked not to show or discuss his invoices to anyone else, which he thought was “not right.”
The peptide vaccine treatments were the single biggest cost, at €11 000 each, he says. These were not administered by the clinical staff but by clinic manager Maike Luz. The Majors were not told exactly what was in them. “Maike came into Sally’s room on one occasion to give her a vaccine we hadn’t asked for. I stopped her,” Liam says.
The experience of another crowdfunded patient, Claire Cunningham, dispelled his doubts. Claire arrived at the clinic with advanced breast cancer in November 2016 unable to walk or talk and having been offered end-of-life care by the NHS. She recovered sufficiently to return to work and her testimony features on the Hallwang website. She was one of a group of 14 patients, including Sally, who bonded as a group through their shared Hallwang experience.
Today, Claire is seemingly the only one of that group left alive. The BMJ was unable to speak to her but it was reported earlier this year that tumours had returned to her lungs and spine and she was very ill.13
“There’s one man who spent €1.5m. His wife got an extra two or three months,” Liam tells The BMJ. He believes Sally’s treatment bought her “four or five months” and dismisses the suggestion that the extra time Hallwang patients seem to have bought may simply reflect the challenges of making an accurate prognosis. When he first took his wife to the Hallwang “she was about to die,” he says. “I could see that. And she did improve.”
Around two weeks before Sally died Liam asked the Hallwang’s senior oncologist Jens Nolting to re-test her tumours to see if any other drugs might be suitable.
“He agreed to it,” Major says. The cost was around €17 000. “A different doctor pulled me out of the room and told me if the treatment Sally was already receiving didn’t work there was nothing else left to try, so we didn’t go ahead.”
Despite all the energy the Major family and friends spent on fundraising, the family was left £70 000 in the red after Sally’s death, forcing Liam to set up a new appeal to help cover these debts.
If he had a second chance he says he would speak to the clinic about its costs before going ahead.
The fact that patients’ families will pull out all stops to get the treatment is part of their business model, he suggests, because if it were not for crowdfunding people wouldn’t be able to raise the funds.
He now thinks the crowdfunding sites should carry warnings or provisos about alternative treatment centres like the Hallwang.
“Having that support from someone who had been involved in a number of cases would have made me think twice. And I’d have been asking questions at the Hallwang rather than just handing over money.”
“The lack of transparency and communication about both costs and how long they may offer treatment for at the outset is both confusing and misleading,” she tells The BMJ.
Families who embark on treatment at a clinic and are then subject to increasing costs without a clear idea of the likely outcomes are put in a “massively difficult and emotive position,” she says. “The Hallwang is the worst example of this I’ve come across.”
Peat also supports the Good Thinking’s call for crowdfunding vetting. “Something has to be done,” she says. “The pressure on families to achieve a target is enormous. It’s morally unacceptable.”
Newspaper and TV reports on people with cancer drive donors to the crowdfunding sites, sometimes attracting the attention of celebrities, who boost funds. They also encourage others to seek the same treatment. “These reports may look like uplifting human interest stories, but the reality can be much darker,” says the Good Thinking Society’s Michael Marshall. “They rarely highlight the dubious and pseudoscientific nature of some of the treatments involved or just how many of the success stories actually ended in tragedy.”
Many stories follow a familiar narrative: a tragic patient, with everything to live for, is on the mend after “miracle” treatment denied them by the NHS. Gemma Nuttall is one example. The Daily Mail and ITV 1415 reported the young mother was now “cancer free” in February 2018, a few months after treatment at the Hallwang clinic, which was funded in part by film star Kate Winslet. Sadly, a recent update on Gemma’s GoFundMe page said the cancer had returned. This has not been reported.
“If the media want to report on medical fundraising stories, they should seek the advice of qualified medical experts,” Marshall said.
Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; externally peer reviewed.

中文翻译：

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癌症筹款活动助长了夸克活动吗？

众筹网站正在帮助晚期癌症患者在未经证实的替代疗法上花费数千英镑。梅兰妮·纽曼（Melanie Newman）检查了电话，以帮助确保患者及其捐助者不受剥削。
医生与NHS治疗失败的转移性癌症患者面临艰难的对话。越来越多的问题是如何建议选择在私营部门进行昂贵的实验性治疗的患者，包括未经证实的组合和剂量进行的正统疗法，以及没有证据支持的替代疗法。BMJ今天发布的数据表明，近年来替代癌症疗法的众筹资金如何飙升（表1和表2）。由促进科学思考的慈善机构Good Thinking Society收集的数据显示，自2012年以来，英国众筹网站呼吁用替代性健康成分治疗癌症的呼吁已筹集了800万英镑（900万欧元； 1000万美元）。其中大部分是在国外治疗。
截至2018年7月1日，GoFundMe和JustGiving的
筹款总额（按诊所或治疗国家/地区划分）截至日期，筹款活动已经开启
.JustGiving自己的数据显示，2016年在其网站上设立了2300多个与英国癌症相关的呼吁，数量增加了七倍为2015年。
这种现象使富裕程度较低的患者能够获得昂贵的，实验性的治疗方法，而这些方法并非由NHS资助，但却有一定的益处。但是许多人担心，它还为捕食弱势群体的曲柄，骗子和骗子开辟了新的利润丰厚的收入来源。
该协会的项目主管迈克尔·马歇尔（Michael Marshall）说：“我们担心，如此多的英国患者正在筹集巨额资金用于治疗，而这些治疗并非基于证据，在某些情况下甚至会对他们造成伤害。”
争议性的Burzynski诊所已为英国患者的治疗筹集了数十万英镑的资金在美国德克萨斯州，针对未经证实的治疗方法和研究试验失败的市场营销，美国政府已经追究了多年。美国食品和药物管理局（FDA）在2009年和2013年向该诊所发出了警告信，列出了对该诊所研究试验的许多担忧，包括未能报告不良事件。122012年，该诊所因违反有关索赔要求的法规而受到FDA的批评。诊所的网站3，并于2017年因德克萨斯州医疗委员会因误导客户而将其所有者制裁.4
数据集中包含的其他申诉涉及格森疗法，涉及咖啡灌肠和频繁的果汁饮料，不仅未经证实，而且可能造成伤害病人5
“如果这些平台希望继续从其用户的商誉中受益，并且确实要从他们向每个筹款人收取的费用中获利，它们有责任确保它们不促进对脆弱人群的剥削，”马歇尔说。
JustGiving对捐赠收取5％的费用，而GoFundMe直到2018年1月才免费。
Good Thinking希望众筹网站能够审查癌症的上诉，并“拒绝彻底提及那些信誉不良的特定药物，极端饮食，静脉注射维生素C，碱性疗法和其他替代疗法的建议。” 马歇尔说：“如果募捐人用于治疗癌症等严重或危及生命的疾病，则应在送交募捐之前对其进行审核，特别是如果该募捐活动中的术语带有引起危险的危险时，尤其如此。”
埃克塞特大学（Exeter University）辅助医学教授埃德扎德·恩斯特（Edzard Ernst）支持此举，并指出众筹组织已经拒绝涉及暴力或非法活动的上诉。他说：“为恐怖袭击筹集资金是不可能的。” “针对癌症惊险症的众筹并没有改善，必须停止。”
GoFundMe是Good Thought数据集中最突出的平台，它表示已经在美国“采取积极措施”，以确保其网站的用户能更好地了解情况，并在未来几个月内在全球范围内进行同样的操作。
发言人说：“最终，我们将更加密切地监视此类内容，以便提供量身定制的建议。” 但是JustGiving告诉The BMJ， “我们不相信我们有专门知识来对此做出判断。”
任何限制晚期癌症患者替代疗法筹款的举动都会引起像萨拉·索普这样的人的不满。她开设了一个GoFundMe帐户，以支付姐姐安德里亚·凯利（Andrea Kelly）在墨西哥蒂华纳的综合整体健康诊所的治疗费用。该诊所提供了多种替代疗法，包括咖啡和亚麻籽灌肠剂，维生素和矿物质输注，以及“ Alpha-2010水疗系统”以及全身热疗，高压氧和“体外光采疗法”。6
其主要临床医生何塞（Jose） Henrique声称，自2000年以来，患有Andrea等4期癌症的患者获得了“ 75％的成功率”。7Andrea在诊所花了三周的时间，花费了21000美元（1.6万英镑； 1.8万欧元），仅仅一年就死了她回来之后。
虽然姐妹俩成为“幻灭”与诊所和一个星期提前结束治疗，索普告诉英国医学杂志说她仍然坚信这次旅行延长了安德里亚（Andrea）的生命。她说：“这给了她希望，当时我们什么都没有。” 安德里亚（Andrea）对NHS的信念遭到破坏，因为她感到自己对癌症复发的担忧被医生一再驳回。当疾病最终被发现时，索普声称她的肿瘤医师没有同情心。
她相信安德里亚（Andrea）受到控制的感觉和她所接受的治疗一样，对她有很大的帮助。她说：“这种授权是如此有用。” “那不是虚假的希望。” 索普认为，寻找替代疗法的整个过程都具有积极作用。“她一直在研究新事物；它让她继续前进。医生不应该无视或对寻求这些选择的人感到悲观。”
美国外科肿瘤学家大卫·戈尔斯基（David Gorski）表示，要找到最佳方法来保护患者和捐献者，同时支持他们的明智选择，对于众筹平台而言，绝非易事。
他说：“我支持不允许众筹在地震诊所接受治疗的概念，但必须承认，我很难看到它在这些中心中的某些实践中将如何运作。” “他们将如何与提供常规治疗和惊险疗法的诊所打交道？”
替代中心通常不发布有关治疗效果的数据，而是提供证明书，其中患者通常描述在开始“保存”他们的治疗之前被给予短暂的生存时间。戈尔斯基解释说：“患者常常不明白没有足够的时间来自信地说他们是幸存者。”
表面上，迄今为止，Good Thought数据集中的最大一笔款项是470万英镑，而这笔钱显然是为去德国南部黑森林的Hallwang私人肿瘤诊所旅行筹集的。该诊所声称，有些人使用Hallwang的名字来筹集资金，但随后没有进行治疗，在某些情况下，甚至没有联系诊所就这样做了。
Hallwang对患者的肿瘤进行诊断测试，并结合实验性免疫疗法，据说可以训练免疫系统攻击癌细胞的肽疫苗以及未经证实的疗法（例如输注维生素）来治疗它们。8提供的药物包括贝伐单抗（bevacizumab），它可以抑制肿瘤的生长。肿瘤血管，pembrolizumab和ipilimumab这两种新型生物疗法的两个成员，称为检查点抑制剂。所有这三种药物均已证明对某些类型的肿瘤有益。
费用高昂：最近一次患者在最初的10天拜访中，患者的报价超过10万欧元。9然而，诊所表示，它在高度私密的环境中提供了密集的治疗监控，护士与患者的比例为1：2。在极具挑战性的情况下。它说，它的许多患者到达时都患有严重的并发症，例如败血症，与肿瘤相关的出血或肠梗阻，这些都是它可以治疗和处理的。它还说，其创新疗法的价格很高，而且由于保险公司或慈善机构等任何第三方都无法负担这些费用，因此必须由患者支付。它坚持要求患者仅在经过充分讨论并获得患者明确同意和同意后才付费并接受治疗。
南安普顿大学（University of Southampton）实验癌症治疗教授克里斯蒂安·奥滕斯迈耶（Christian Ottensmeier）曾与前Hallwang患者接触并接受过治疗。在标准临床实践中，他使用Hallwang处方的某些相同免疫疗法药物，但剂量和组合不同。
他说：“以我的经验，Hallwang的20-25％的晚期癌症患者可以从中受益。” Hallwang还将这些药物用于尚未经过测试的疾病。Ottensmeier说：“我对此没有问题。” “但它需要与患者就机会，风险和成本进行仔细的交谈。”
Hallwang说，在谈到治疗结果时，重要的是要区分部分缓解和完全缓解，并且在预期寿命只有几周或几个月的情况下，生活质量会有所提高，或者可以多花几个月的时间来缓解生活被认为是成功的事，也是患者感到满意的事情。该诊所未发布生存率。
Ottensmeier认为不应该禁止Hallwang患者进入众筹页面，但他说，患者及其捐助者必须更好地了解他们所支付的费用。筹款地点表明，一些Hallwang患者对其长期生存的前景夸大了看法。阿纳斯塔西娅·莱斯利（Anastasia Leslie）在“购买另一天” GoFundMe页面上说，Hallwang告诉她：“所有卵巢癌患者（过去15年中每年约20至25名）…仍然活着，状况良好，而且处于缓解状态。” 尽管显然仅在一周内就在该医院花费了10万英镑10，但她的去世页面还是在她首次访问德国的几个月内在资助页面上宣布的。她的呼吁筹集了15.5万英镑。
瑞卡·贝纳吉（Rekha Banerji）对患有第四期乳腺癌的女儿丽贝卡（Rebecca）的上诉说：“尽管在英国，这是一个绝望的案例，德国医生对丽贝卡（Rebecca）将获得全部缓解感到非常有信心。” 11上诉筹集了14,645英镑但据她的GoFundMe页面，她的女儿也在开始治疗后的几个月内就去世了。
Hallwang坚称，它从不向患者提供任何保证，并且始终提供有关其替代治疗策略的详尽信息，它说这是最先进的。
奥滕斯迈尔还质疑霍尔旺的价格。他说：“花费更少的钱，您可以购买相同的免疫疗法药物，并在英国进行管理。”
曾任肿瘤学护士的帕特里夏·佩特（Patricia Peat）在亲自去诊所后建议人们（专栏1）去Hallwang，她说她现在已经停止向客户推荐它了。
莎莉·梅杰（Sally Major）在她的担忧被国民保健服务（NHS）多次驳回后，才在32岁时被诊断出患有4期肠癌。她的四个孩子中最小的只有2岁。
萨利和她的丈夫利亚姆（Liam）向前肿瘤学护士帕特里夏·佩特（Patricia Peat）寻求建议，帕特里夏·佩特现经营一家位于诺丁汉的咨询公司Cancer Options，该公司声称可帮助患者应对该疾病的其他方法。皮特建议少校前往德国的Hallwang私人肿瘤诊所。
但是有一个问题-Hallwang非常昂贵。皮特（Peat）建议花费大约8万英镑。在接下来的一年中，利亚姆一家人花了四倍以上：35万英镑，利亚姆（Liam）告诉《英国医学杂志》（BMJ）。他们将房屋抵押贷款，向银行贷款，出售汽车并在众筹网站YouCaring上提出上诉。
随着这一年的到来，利亚姆在网站和媒体上的求情活动（包括莎莉的求职和筹款活动）变得越来越绝望。“这周花了我们26000欧元...我们的钱终于用完了，”他在《镜报》中说2017年3月的故事。12“莎莉几乎站不住……我们无法让她回家。同样，我们负担不起住在这里的压力，因此别无选择。我真的在乞求。”
几周后，萨莉在Hallwang接受治疗时死亡。自从她第一次访问以来已经过去了不到一年的时间。
萨利（Sally）在2016年7月首次访问德国时，利亚姆（Hamwang）的指控令他大吃一惊。他说：“我们每天在治疗费用上的花费约为1000英镑。” 但是Hallwang建议其工作人员对他妻子患上的特殊癌症有经验，并且他们希望让她早日康复，因此他不会为金钱辩护。他说：“他们向我们讲述了一些积极的故事，却从未提及任何死者。” “我确实要求提供存活率的数字，但被告知患者不想共享他们的数据。如果我不是处在一个绝望的境地，我可能会问更多的问题。” 还要求他不要向其他任何人显示或讨论其发票，他认为这是“不正确的”。
他说，肽疫苗治疗是唯一的最大费用，每次费用为11000欧元。这些不是由临床人员管理，而是由诊所经理Maike Luz管理。少校并没有被告知确切的内容。“迈克有一次来到莎莉的房间给她注射了我们没有要求的疫苗。我拦住了她，”利亚姆说。
另一位众筹患者克莱尔·坎宁安（Claire Cunningham）的经历消除了他的疑虑。克莱尔（Claire）于2016年11月到达患有晚期乳腺癌的诊所，无法走路或说话，并已获得NHS的临终护理。她恢复了足够的精力以恢复工作，并在Hallwang网站上发表了证词。她是包括Sally在内的14位患者中的一员，他们通过共同的Hallwang经历成为一个纽带。
如今，克莱尔（Claire）似乎是该组织中唯一一个还活着的人。BMJ无法对她说话，但据报道，今年早些时候，肿瘤又回到了她的肺部和脊椎，她病得很重。13
“有一个男人花了150万欧元。利亚姆又过了两三个月，”利亚姆告诉BMJ。他认为，莎莉的治疗方法使她“花了四个或五个月”，并驳斥了汉王患者似乎已购买的额外时间可能仅反映出做出准确预后的挑战的建议。他说，当他第一次把妻子带到Hallwang时，“她快要死了”。“我可以看到。她的确进步了。”
萨莉（Sally）死前大约两周，利亚姆（Liam）邀请Hallwang的高级肿瘤学家詹斯·诺尔丁（Jens Nolting）重新检查她的肿瘤，看是否还有其他合适的药物。
“他同意了，”梅杰说。费用大约为17000欧元。“另一位医生把我拉出了房间，告诉我莎莉已经接受的治疗是否奏效，没有别的尝试了，所以我们没有继续。”
尽管梅杰家族和朋友们全力投入筹款活动，但萨莉去世后，全家人仍留下了7万英镑的赤字，这迫使利亚姆提出了新的呼吁，以帮助他们偿还这些债务。
如果他有第二次机会，他说他会在继续之前与诊所谈谈费用。
他表示，病人的家人会竭尽全力去接受治疗，这是他们商业模式的一部分，因为如果不是为了群众集资，人们将无法筹集资金。
他现在认为，众筹网站应该对诸如Hallwang之类的替代治疗中心发出警告或附带条件。
“得到涉及多个案件的人的支持会让我三思而后行。我会一直在Hallwang问问题，而不仅仅是交钱。”
“缺乏对两者成本透明度和沟通以及多久，他们可以在一开始就为治疗提供既混淆和误导，”她告诉英国医学杂志。
她说，那些在诊所开始接受治疗，然后又要增加成本，却对可能的结局不清的想法的家庭处于“极为困难和情绪化的状态”。“ Hallwang是我遇到的最糟糕的例子。”
皮特还支持“善待人”呼吁众筹审查的呼吁。她说：“必须要做的事情。” “家庭实现目标的压力巨大。这在道德上是不可接受的。”
报纸和电视报道中有关癌症患者的报道将捐助者带到了众筹网站，有时引起了名人的关注，这些名人筹集了资金。他们还鼓励其他人寻求同样的待遇。“这些报道看起来像是在鼓吹人类的兴趣故事，但现实可能要黑暗得多，” Good Thought Society的迈克尔·马歇尔（Michael Marshall）说。“他们很少强调所涉及的某些治疗方法具有可疑和伪科学的性质，或者很少有多少成功案例最终以悲剧告终。”
许多故事都遵循一个熟悉的叙述：一个悲惨的病人，为了一切而活，在NHS拒绝了他们的“奇迹”治疗后，他们的状况得到了改善。杰玛·纳塔尔（Gemma Nuttall）是一个例子。每日邮报ITV 1415报道说，这位年轻的母亲现在在Hallwang诊所接受治疗几个月后，于2018年2月“无癌”，该诊所的部分资金由电影明星Kate Winslet资助。可悲的是，Gemma的GoFundMe页面上的最新更新说癌症已经复发。这还没有报道。
马歇尔说：“如果媒体想报道医疗筹款的故事，他们应该寻求合格的医疗专家的建议。”
利益冲突：我已阅读并理解BMJ的利益声明政策，没有相关利益声明。
种源和同行评审：委托；外部同行评审。