Thursday, 11 April 2019
Treatment of Cancer (Advertisements) Bill 2018: Second Stage
I move: "That the Bill be now read a Second Time."
I thank Deputy O’Connell for introducing her Bill and I welcome the opportunity to address the House on behalf of the Minister for Health. The Deputy’s Bill has much merit, particularly as its purpose is to protect cancer patients and their families from being adversely influenced or offered false hope by so-called fix-all treatments and cures.
Patients recently diagnosed with or undergoing lengthy and painful treatment to fight a life-threatening disease such as cancer feel vulnerable and possibly fearful. They need positive, accurate and correct advice from the clinicians and other health professionals treating them. Above all, they must have confidence in what they see, read and hear about their condition in the press and on the radio, television and particularly social media. They may look for opportunities to increase their chances of recovery or to alleviate the side effects of their treatment. This desire can leave them open to being taken advantage of through claims made for alternative treatments that it is claimed provide a cure for cancer. Patients can be left open to abuse from these advertisements. As the Irish Cancer Society stated last December: "such dangerous advice leaves them at risk of harmful side effects and even death".
As Deputy O'Connell has informed us, there is potential for spurious claims to be made around costly and non-evidence-based treatments or diets for curing cancer. Indeed, they are often made. There is much public concern about such underhand and nasty attempts to exploit decent people and give them unfulfilled hope that they may recover without going near a professional clinician. Such advertisements generally come at a financial cost, as those making them seek payment with the intention of making a fast buck. By using social media and online platforms these people can easily hide their identity, leaving cancer patients acting on these offers in a worse place physically and mentally, and possibly at considerable financial loss.
In the treatment of cancer or any disease, patients should only receive competent medical advice and treatment from qualified medical or other healthcare professionals. We must always ensure that this high standard of care and advice is provided. While the Government is supportive of the objectives of the Bill, there are some areas that the Department of Health believes require further work. The Bill is potentially very broad and may overlap with some existing legislative provisions. We must also ensure that, if enacted, the Bill does not offend free trade rights, such as advertising by private hospitals. However, the Minister for Health believes there is significant merit in Deputy O’Connell's Bill and is pleased she has agreed to work with the Department before Committee Stage.
The Deputy has brought to our attention an issue that allows unprincipled people, for purely commercial reasons, to prey on ill and vulnerable people and offer hope that is not founded on medical or scientific evidence. If such advertisements are taken up, it may place patients in the hands of those who are not suitable or qualified and who ultimately may cause more harm. The issue is broad and complex and crosses multiple fields of regulation, including medical treatment, advertising through multiple media, food safety and possibly more. I sincerely thank Deputy O'Connell for and commend her on taking on the advertising of inaccurate and misleading cures and treatments. She is standing up to faceless people who hide behind the Internet or social media for personal and criminal gain.
This is important legislation that I am proud to sponsor and delighted to have the opportunity to progress. It has the support of the Irish Cancer Society, the Irish Association for Nurses in Oncology, the Irish Nutrition and Dietetic Institute and the Royal College of Physicians of Ireland. Furthermore, it has the backing of many cancer survivors, brave patient advocates who have battled various types of cancer ranging from melanoma to prostate and breast to testicular. They 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. On RTÉ's "Prime Time", Conor Wilson did great work exposing many of these practices in a special show aired a few months ago. It was an excellent example of public service broadcasting, although it had a deeply upsetting narrative. The families left behind and their pain, loss and suffering were harrowing to watch.
People in desperate situations following a cancer diagnosis are at a vulnerable point and need the protection of the law from those who would prey on them at that difficult stage in their lives. It is over 300 years since he said it, but the famous satirist Jonathan Swift was in many ways prescient when he wrote:
... as the vilest Writer has his Readers, so the greatest Liar has his Believers; and it often happens, that if a Lie be believ'd only for an Hour, it has done its Work, and there is no farther occasion for it. Falsehood flies, and the Truth comes limping after it; so that when Men come to be undeceiv'd, it is too late; the Jest is over, and the Tale has had its Effect.
Currently, there are no adequate safeguards to protect patients against unproven, and at times very dangerous, treatments being offered to them. Falsehoods fly around on the Internet and the truth is lost, dismissed or simply shot down by conspiracy theorists who think anecdote is the plural of fact. With the advent and proliferation of social media platforms, it is now imperative we bring forward this legislation to protect people from so many of these lies, false claims and alternative facts.
The fake news headlines that try to promote miracle cures or dangerous alternative treatments are the worst, as they drive engagement on social media and gain attention and credibility. Some people are genuinely duped and do not set out deliberately to mislead others, while others are simply cruel enough to see a marketing opportunity for their snake oil in another person's suffering. As long as there is profit to be made on these fake cures, this type of misinformation will continue until we establish some common-sense regulations. I welcome the statement from the fundraising site GoFundMe yesterday that it will no longer allow anti-vaccine campaigns to use its platform.
This short Bill is about being able to prosecute people who are making large sums of money by peddling treatments or cures that, at best, have no proven effect whatsoever and, at worst, increase suffering, cause even greater pain and often hasten death. It is important to point out that the patient will not be the one found at fault, but the people who provide, promote, publicise and advertise products of dubious or dangerous composition and efficacy will be. The choice will remain for the patient to opt for proven or unproven treatments. This Bill does not seek to remove that choice.
I do not pretend that the Bill is perfect and I am open to working with Members of this House and the Seanad, as well as patient advocates and qualified, recognised and valid medical practitioners and healthcare providers. Some would say the Bill should go further and be broader and more all-encompassing. Dodgy people making false statements are not unique to cancer care - they span a range of health issues. I urge people to engage with the legislative process and to help make the Bill as fit for purpose as possible by inputting their experiences and ideas. We must develop and maintain the best care and protection for our population's health and for cancer patients in particular. We must build on and improve the established standards in cancer research and treatment, ensuring we follow best practice in a peer reviewed and evidence led manner.
I noted with concern this week the stark warnings about a projected increase in the number of people at risk of developing cancer in Ireland over the coming decades.
I understand that the Department, the Minister and the Government as a whole are all working to try and resource extra services where necessary, allocate increased staffing and funding, broaden access to screening, especially in the area of mammography and promote the Healthy Ireland policy, as a policy to improve the health of our nation as a whole.
This legislation is an important element to consider in relation to those projected cancer rate figures, as the people who are predators upon the sick will also be looking at those figures too and seeing them as a potentially emerging and captive market for their bogus remedies.
One would not wish a cancer diagnosis on anyone, but modem medicine is showing remarkable and impressive improvements in survival rates. Thirty years ago, only three in ten people survived cancer. Today, that figure is six in ten. That is a credit to the investment in lifesaving research as well as the major improvements in cancer care under the cancer strategies. One in every two of us will be diagnosed with cancer in our lifetime. Make no mistake, the world is full of good people who will help with a diagnosis and do everything they can to help a person win their battle against cancer. For every one of those people, however, there are others who will see a person as a cash cow to be milked for all the person is worth. I hope the Opposition parties and Independents can support and assist in the passage of this Bill through the Houses, as it is not before time.
I would like to thank those people who have helped me with this Bill, who pulled me back on certain issues, the patient advocates who fed in their experiences, the medical professionals and the cancer societies. I see in the Public Gallery Dr. David Robert Grimes who helped me with this Bill and has fed in his expertise. I could not have produced this Bill - I am a pharmacist originally - without the help of the professionals who guided me. I hope that my colleagues in Fine Gael and across the Chamber will see the merit in this Bill. In this ever-emerging world of social media and new development with Facebook, it is timely how this Bill has arisen and that we will try to get it through the Houses in a way that is fit for purpose. The point of this Bill is to protect the most vulnerable people at a vulnerable point in their lives.
Finally, I thank the staff at my office and the many interns who have passed through and been involved in this Bill, in particular Theresa Newman and Etain Hobson, who have a personal interest in this Bill. I thank everybody for listening today and look forward to working with Members on this Bill over the coming months and will be happy to engage on all levels on it.
I acknowledge the work that Deputy O'Connell has done in bringing this Bill to Second Stage. I remember bringing my own first Private Members' Bill to the House in 2011. It is a great honour for those of us who are not Ministers and are not used to bringing legislation forward, as the Minister of State here is, to be able to come into the national Parliament and introduce one's own legislation.
The short answer is Fianna Fáil will be supporting this Bill through Second Stage but we have a number of serious issues with the Bill as drafted. That is the short version of the speech.
This is the slightly longer version. I want to decouple the intent of the Bill and the reality of the Bill as drafted. I strongly support the intent of the Bill, not all parts but most parts, and the core piece which is essentially to protect patients. That is my understanding of what Deputy O'Connell has just outlined and what is in her briefing notes. This is about protecting vulnerable people and their families from charlatans. It is the case that the organisations which support those patients and families are reporting growing incidents of charlatans targeting vulnerable people and trying to extract as much money out of them as possible.
Arguably, much more worrying in some reported cases, patients are encouraged to stop with their medical treatment. There should be the strongest possible sanctions for anyone who would encourage and succeed in stopping a patient who was being treated for cancer from medical treatment for the disease. We are moving into a new world of social media where regulation and we as legislators lag behind most of the time.
Pre-social media, it would be quite difficult for the snake oil salesman or woman to find and target these people. An ad might possibly be placed outside a local cancer support centre or in a newspaper to get to people but one would be shooting in the dark to a considerable extent. That is no longer the case. An online company can now be paid to identify and find people to a high degree of accuracy who are using keywords like "cancer" and "radiotherapy", people who either have cancer or are doing some research for friends of theirs who have cancer. One can advertise directly to them, to their screen at work or directly into their hand on a smart phone. We are in a completely new world. It is probably appropriate that we take a look at protecting people in that world.
Fianna Fáil will be supporting this Bill through Second Stage because we greatly support the intent of the Bill.
There are several issues I would like to raise for consideration by both the Minister of State and Deputy O'Connell in the current drafting of the Bill between now and the next Stage. The first is that the approach of criminalisation is not my understanding of how one tends to deal with these matters. The idea that someone might advertise something and not be able to meet a certain burden of proof, and potentially to be faced with five years in prison as a result of that, is not typically how these things work. False advertising and targeting in such ways are dealt with in a different way.
For example, the Irish Nutrition and Dietetic Institute took a complaint two years ago to the Advertising Standards Authority for Ireland in relation to exactly what Deputy O'Connell is trying to stamp out. A nutritional therapist was providing nutritional advice on a website and falsely claiming that it could cure cancer. The Advertising Standards Authority for Ireland ruled against the therapist and it was shutdown. The legal advice I have on the Bill is that approach - to begin with everything as a criminal offence but that there are exceptions to that criminal offence - is not how one approaches this type of enforcement or legislation. Perhaps the Government might consider making the approach more parallel to how similar activity is dealt with by the State.
One question I have is why just cancer. If this is where we are going, the Bill needs to be pulled back quite considerably in certain ways but potentially expanded in other ways. Who else is being targeted? Are people with all sorts of other diseases being targeted? If we are doing this, then maybe we should consider doing it as a principle, rather than just for a specific disease, awful, obviously, as that disease is.
I would also like some consideration to be given to how genuine innovation is not deterred. There is the potential, because of the way this Bill is laid out and the provision for a criminal offence with up to five years in prison except in certain circumstances, for a chilling effect on innovation.
This has nothing to do with cancer, but as an example, I was talking to a GP this week who had a patient who had ulcers going down to the bone and who was facing double amputation of his legs. He had tried everything and nothing worked. There is apparently a very clever engineer in Ireland who has invented a type of hyperbaric chamber, the type of chamber that divers are put into for the bends. The idea here is that the person is infused with pressurised, highly oxygenated air. The person sits in the chamber for however long and goes through several sessions. In fairness to the HSE, it funded the treatment and now Laya Healthcare has taken it on. Incredibly, the guy's skin began to grow again.
Super-oxygenated blood got pushed to where it needed to be and the man did not need amputation. That was an engineer doing something clever. It was not about cancer but we need to ensure that, whatever we do in making things illegal, we leave room for people to innovate and do amazing things and be able to talk about what they have done.
One matter I would like to be considered is the idea that people can only advertise to medical professionals. I think I understand why this is proposed. It provides a level of expertise and an expert filter for advertisements but I do not think patients need to be protected in that way. If advertisements are false, then they are false. The idea that someone could advertise to medical professionals but not to the public and that the public are incapable of absorbing this information or doing their own research is not the right way to go. If people are found to be falsely targeting vulnerable people, it does not matter to whom they are advertising. They simply need to be found, stopped and prosecuted for doing so.
There are other questions, including in respect of the prevalence of this issue. Perhaps Deputy O'Connell has provided this information in a briefing note. I have read what I understand to be the briefing note from her but I have not seen research suggesting that 100, 1,000 or 10,000 people are being targeted in this way in Ireland. Such information would be useful.
I have a basic question - I apologise if it a stupid one. Why is this needed relative to the law that is already in place? We have laws in respect of false advertising. I gave an example of the Advertising Standards Authority for Ireland using existing legislation to stop someone selling false hope to cancer patients. I am not stating that the Bill is not required but I would like to know what the difference would be, particularly as we already have laws to prevent false advertising.
My understanding is that the Minister of State has laid out how the Department will take the Bill away and do some work on it. Is there a case for a report to come to the joint committee on the matter? There is a rich vein of thinking behind the Bill and perhaps we could go beyond cancer and apply the principle right across healthcare. I am unsure whether this is a matter for pre-legislative scrutiny. That would normally happen before Second Stage or between Second Stage and Committee Stage. That is normally when the committee would engage in pre-legislative scrutiny. If that is not suitable, then certainly an expert report from the Department to committee would be useful. Then perhaps we could discuss the Bill at the joint committee or informally among health spokespeople before Committee Stage. Otherwise we will simply be tabling amendments in the dark. If the Government is coming forward with major changes anyway, there is little point in those of us in opposition proposing amendments to what we can see now because it will all change in any event.
I acknowledge the work of Deputy O'Connell - well done to her. This is important work and I know it is not easy to get a Bill before the House. We support the intent behind the Bill. It sounds as if everyone is open to working together to figure out how to make it work. I have outlined some of my concerns and those of Fianna Fáil, as well as some ideas regarding how to pull some things back and perhaps be more optimistic or forthright in other areas in to expand what is proposed.
I thank Deputy O'Connell for bringing forward this Bill. We are happy to support it. I want to say a word about some of the people who have criticised the Bill. Perhaps they were trying to muddy the waters a little. For us, the intent of the Bill is clear and we support absolutely the intent. I am pleased Deputy O'Connell has said she is willing and open to working with people and Opposition Deputies. That is a good thing. I agree with Deputy Donnelly that some form of committee scrutiny might be helpful, but that would simply be to strengthen it.
We have absolutely no problem with the intent of the Bill. Section 2(1) states:
No person shall take any part in the publication of any advertisement containing an offer to treat any person or provide any remedy for cancer, or any advice in connection with the treatment of cancer, or which suggests that a medical consultation, diagnosis, treatment or surgical operation is unnecessary for the treatment of cancer.
It is difficult to argue against that. The idea is to prohibit someone from deliberately targeting a vulnerable person at a time in life when that person would be least able to avoid such targeting and when the person would in fact be absolutely desperate. It is really sad that people would do such a thing. It is shocking and horrible but the fact is that some people do this. I suppose bad things happen and maybe that is why we were sent in here to deal with them.
The Bill does not attack or ban complementary therapies such as acupuncture, massage or mindfulness when carried out alongside medical treatment as recommended by a doctor. It is important that we put that on the record. I have been contacted - I imagine others have as well - by people expressing disbelief that we were about to outlaw massage therapy and so on. Clearly, we are not going to do that and we are not trying to outlaw acupuncture either. It is important that we do not get confused about that. Many patients find those therapies helpful and useful and find that they have a real and serious benefit.
The intention behind the Bill is to focus on the publication of advertisements and to prohibit people from offering to treat or remedy cancer while suggesting that medical consultation or proper diagnosis or medical treatment are unnecessary. That is worrying but we need to put ourselves in the shoes of the person who would be targeted. Such a person may be highly vulnerable and at a bad time in life and may believe the medical profession has been a let-down because there is no sign of getting better. It is worrying that such people would be targeted but I guess the fact is that we know they are.
I echo what has been said before about the evidence. We need to interrogate how serious a problem this is. Perhaps we need to look beyond cancer as a disease and look to other areas. I imagine someone deceitful enough to target a person with cancer would probably not decide to limit targeting to those with cancer and opt not to go after someone with a different condition. If such people are around, it is probably of some benefit to look beyond a single disease. I have talked to people in advocacy groups. They say they have seen an upsurge in such activity. Perhaps that makes the Bill necessary. I imagine Deputy O'Connell would say we have to start somewhere and that this is as good a place as any.
We have all heard the nonsense - especially those of us interested in the area of health - that there is a treatment for cancer and that doctors and big pharma are somehow attempting to cover it up or keep it out of the public domain. The story goes that the cure is out there and if we could simply get past the powers that be, we could get to it. Pseudoscience is really harmful. We saw that with the initial decrease in the level of vaccinations. Thankfully, there has been some resurgence. In any event, that is concerning. It points to an area where vulnerable people have been targeted, including people who get information from the Internet and social media but not from their doctors. There are serious consequences for people's health and lives when unsubstantiated claims are made with no medical or scientific basis. That is the perspective behind the Bill. It is a public health matter that we need to take seriously.
I welcome the fact that Deputy O'Connell has indicated openness to discussions because I believe that if we work together we can ensure we strengthen the Bill where it is needed. We know a good deal about fake news and social media. It has been referenced previously. Twenty years ago, people would have been unable to do this to the extent that it is being done now. That is why we need to ensure that we tackle this. The spread is almost uncontrollable. It is not a case of information going by word of mouth or by an advertisement in the local supermarket. It goes from home to home quickly and it makes its way around the world very fast.
Before I came in, I received correspondence from the Irish Cancer Society. Very worryingly, it points out that patients are being urged to stop their medical treatment, to use alternative treatments that have caused harmful side-effects and, in some cases, even death. The Cancer Society has called for an end to the direct targeting of those living with cancer by people who are wholly unqualified to advise them. It is regrettable that it has had to call for that. For the avoidance of doubt, we are not attacking the use of complementary therapies such as acupuncture, massage etc. We are ensuring that those who are targeting people without a medical basis to do so can be prevented. It is important to say that those complementary therapies will not be impacted by this legislation because there is a significant number of people who believe that they somehow will be. It would be good to assuage those concerns.
There have been significant advances in surgical treatment, radiotherapy and chemotherapy in multimodality treatment. Much of this has been driven by the medical profession. I have seen it. I have spoken to surgeons, consultants, doctors and nurses and seen the real difference that those individual health professionals have made. We also have to be sure that cancer treatment in the health service as a whole is properly resourced. Furthermore, we need to make sure that the hard work of our dedicated medical professionals is matched with resources and funding. These things make a real and tangible difference, they improve outcomes and they save lives.
I thank Deputy O'Connell for introducing the Bill. I assure her of our support for its intent and our continued co-operation to ensure, whether on Committee Stage or informally, that we can strengthen this legislation and make sure that it is fit for purpose and provides the help and the sanction that might be needed.
I acknowledge the extent of work that goes into a Private Members' Bill, for the Member, the Member's staff and also for the Oireachtas staff. With the advances made in cancer treatment, cancer is not the death sentence that it once was. We see a range of treatments and medicines. I know from the experience of family and friends that they are discovering that if they have a cancer, if plan A does not work, there will be a plan B, and if plan B does not work, there will be a plan C. Certain friends of mine are great believers in the complementary therapies and how well they work alongside medicine. We have to respect the decision of a patient and cancer-sufferer if he or she decides that he or she does not want to go for medical treatment and wants to try something complementary. I understand that people who are ill are prepared to try any treatment and take up any suggestion in the hope of a cure. We know that exploitation of very vulnerable people is taking place and that is appalling. To have advertising for a product claiming a health benefit with no proof of that is damaging, especially if it impacts on a patient's already fragile health.
Looking at the overall picture, while I know that this Bill is pursuing one specific aim, it is important that other points are made. I would not share the confidence that the pharmaceutical industry always has a social conscience. It is a profit-making industry and that is what it does. It is appalling to see the prices that it is coming up with. I have been involved with groups such as Access to Medicines Ireland. It beggars belief that the industry can seek a certain amount for a medicine that it knows will save lives and barters and bargains. I think it has a responsibility to be more proactive on this. Having said that, there are delays which have to be taken into account too. Data were recently released by the European Federation of Pharmaceutical Industries and Associations regarding the availability of new cancer medicines in Ireland compared to the rest of Europe. I suggest that, with that delay, there is a vacuum where people will try anything else. They will try whatever suggestion is made to them.