How Can UK Oncologists Manage Hope Over Expectations?

Karol Sikora


October 02, 2018

Hello. My name is Karol Sikora, professor, oncology in London, and I'm going to talk today about the growing trend in cancer fundraising directly for care costs for patients. This is something that's happened over the last 2 to 3 years. And the drivers have come from the internet. The fact that social media is out there, people can ask their friends, relatives, indeed the public, to donate to their cancer treatment. And this is causing some problems and will continue to do so.

So basically, it's all about money. When I started as a consultant, a complete course of chemotherapy for cancer, would be about £5000. Now there are single drugs that cost over £100,000 for a year's supply. So the conflict is there and no health economy can afford to fund everything.

In the UK we have NICE [The National Institute for Health and Care Excellence] which is a very effective health technology assessment organisation that produces detailed reports on drugs. And inevitably, there are some drugs that get left out because they don't have the value compared to the cost of the drug in terms of the response they give the patient.

Crowdfunding Cancer Care

So let's analyse the drivers behind this recent movement of crowdfunding and other ways to raise money directly for patients. So firstly, it's big pharma and big equipment makers. Inflation is way beyond general inflation for cancer drugs, and we look at what's going on it's clear big pharma are charging essentially what the market will bear, what they can get away with. It's not related to the value of a drug in terms of number of patients it can help, or the benefit to individual patients.

Secondly, the public are not gullible. They can see, they have access to information like never before. Dr Google is out there. People can look up all the new drugs, they talk and there are blogs. There are various site-specific tumour charities, Breast Cancer UK, Myeloma UK, Pancreatic Cancer UK, and so on. And they can find out what's available, what other patients may be getting. In addition, the media are relentless in moving forward on stories about cancer. There's scarcely a newspaper every day that doesn't mention cancer somewhere and much of it is about not getting access to certain treatments.

The creation and demise ultimately of the Cancer Drugs Fund, which was politically inspired under the last government to try and get away from the politicians being blamed for the drugs not being available, is clearly something that's pushed drugs into the fore, despite the fact there are other things cancer patients could have: better diagnostics, more accurate diagnostics, better radiotherapy, better surgery, and so on that are not so easily quantified.

And finally, the fifth driver, I believe, is the declining spirituality of people. They don't want to think of the concept of death. It's no longer an acceptable endpoint. Perhaps previous generations, I can't say they didn't mind, but they were more welcoming to the fact that they've switched to palliative care and there was nothing more. That's gone and modern society, with its lower spiritual values, struggles with the concept of death, and we don't really talk about it in the clinic that much.

So there are two interesting publications just in the last couple of weeks. The first in the BMJ by Melanie Newman, who is a freelance journalist writing a paper called Is cancer fundraising fuelling quackery? Now this paper is mainly actually about alternative medicine, people going to alternative clinics, people paying for alternative medication, rather than paying for a recognised drug, such as immunotherapy, that they can't get on the NHS. Spawned, as I said, by the internet, and also by the availability of fund collecting websites, JustGiving, for example, and GoFundMe. The first is for-profit and takes a percentage. So there's no disincentive to collect for anything. And, in the article JustGiving admits that it can't really police it. It has no oncology expertise. It can't tell between what's good and what's bad, what's worthwhile, what's not worthwhile. And the donors are stuck because they're not going to do a lot of detailed research on it. They do it out of the kindness of their heart. So, is it right that this goes on? And really there are two sorts of treatments that are being collected for - one completely wacky and are really alternative. For example, Burzynski - urine - chemicals extracted from urine in Texas. Burzynski himself has been in trouble with the FDA for many years. And it's clear that the evidence base is lacking. And others are alkali treatments, high-dose vitamin C, coffee enemas, and a variety of other way-out treatments for which there really isn't any evidence base. And it's on the onus of those that are producing those treatments to provide the evidence that they actually work.

The second group of treatments are pseudo-scientific. A good example, it's written about in detail in the BMJ article, is the Hallwang clinic in the Bavarian Alps in Germany. And apparently it's a very exclusive place, very expensive, up to €10,000 a day to go there. And the treatments on offer include modern drugs such as checkpoint inhibitors, bevacizumab, low-dose conventional therapy, molecular testing for personalisation and also a variety of wacky therapies. But of course, you get response to the orthodox, and then you don't know what you responded to. So both the wacky and the pseudoscience extract money from patients’ friends and relatives through these crowdfunding sites.

Press Coverage

The second paper is perhaps a more interesting one and looks at a detailed analysis of how the mainstream media, the main daily press in the UK, have handled the whole business of the Cancer Drugs Fund. Now the Cancer Drugs Fund was set up in 2010 with a budget of £50 million that came out of the Conservative Party manifesto before the election in which David Cameron wrote, no patient will be denied a cancer drug provided their consultant believes it's going to work, basically, and that led to £50 million pounds, rapidly went up to £150 million pounds, and closed in 2016, when it was reviewed. A total of £350 million being spent each year on these drugs. Now the irony, you've created NICE, fabulous, but then on top of that, you have this breakthrough that allows everybody to get access if they can. And it creates tremendous tension for the patient, for the doctors, for the relatives, about the whole business. And inevitably the problem was that data wasn't collected. We have no evidence base that it really did any good for anybody. Only 18% of the patients had any clinical benefit from a Cancer Drug Fund administered drug. And this data wasn't collected. In the paper, in the Journal of the Royal Society of Medicine , the authors Ajay Aggarwal and Richard Sullivan, who've written an awful lot of interesting stuff about funding cancer, looked at the mainstream media through a database – a database called Factiva which allows you to look at articles on specific topics. Needless to say, the Daily Mail was top with the most cancer stories. And not only that, it's the highest circulation and probably the most influential.

What they didn't mention, the Daily Mail has profound female readership and women in society are much more health conscious for the whole family than males who tend not to be so interested in these sort of articles. And it was clear that there were 382 stories about the Cancer Drugs Fund and cancer drugs allocated through it. It covered 44 drugs, 16 cancer sites. The top drugs were, needless to say, bevacizumab and abiraterone. The former for a variety of cancers. Abiraterone, of course, just for prostate cancer, and the cancers most covered were breast, prostate, and colorectal.

And there's no doubt the articles all left the impression, the majority left the impression, that if you got these drugs somehow you survive longer, you'd benefit from these drugs. It didn't say they were a cure, but it did say you'd benefit. And this is a problem, because in some cases you might, and in some cases there just isn't the evidence base.

Hard-Nosed Oncologists

So we see all the time in patients that search for hope, what we're rather hard about, hard-nosed oncologists, is taking hope away. We do that at our peril. And what people do is say, well, there's a way around this. I'll go on to Google. I'll travel. I'll get a second opinion. I had a patient that was very wealthy who suddenly took off, went to Memorial Sloan Kettering in New York, came back a week later and said: "You're right. There's nothing I can do." Needless to say he had a metastatic pancreatic cancer, was riddled with metastases. So clearly it was the wrong thing to do, but it was good for him to do it. He needed to do that to come to terms, to come to closure that there was no magic cure for his disease.

I think we're all very uncomfortable when patients say to us, could I ask you if, is it worth me doing something that we know it's really not worth it. And that's very difficult. And I think if you get a group of oncologists in the room to talk honestly, they all have different ways of handling the situation. Some say I really don't know I can't help you, others say it's a waste of time, money, and your efforts, others just beat around the bush and don't give a clear answer. And I think we really have to be more consistent in the advice we offer.

I think the future, we're all part of a dance, the patient in the middle, the health professionals, the drug companies, the equipment makers, the health provider, whether it's an NHS system or an insurer, we're all in a dance around the patient and we all want to do the best we can, but there are also factors in there that detract from optimal care, going down areas where it's really not worth it. And I think today, we now have to face up to the fact that not everything on offer is appropriate, and that palliative care, dealing with the symptoms the patient has, is in many cases far more important than active treatment, beyond second or third line therapy when that fails.

I'd really like to hear your views on this. This is Karol Sikora in London. Please contact me if you want to express a view. Thank you very much for listening.


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