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Dáil Éireann debate -
Thursday, 16 May 2019

Vol. 982 No. 8

Treatment of Cancer (Advertisements) Bill 2018: Second Stage (Resumed) [Private Members]

Question again proposed: "That the Bill be now read a Second Time."

Returning to my previous point, I acknowledge that there have been amazing advances in treatments for cancer and that cancer is not the death sentence it once was. Everybody here has family or friends who have experienced cancer. We know the range of treatments. If plan A does not work, there can be a plan B and a plan C. However, it is not easy dealing with cancer. We know about the side effects, which are particularly difficult for some cancer patients. We know that some of the drugs people are on are toxic and if people are on them for a particularly long time, some of them will experience pretty dire side effects. It is a balancing act between the drugs that are dealing with the cancer and what those drugs are doing to the person's body.

I can understand why those diagnosed with cancer will turn to alternatives alongside or perhaps instead of conventional treatments. We know there are other treatments that are very positive. They include aromatherapy, reflexology, acupuncture, tai chi, mindfulness, yoga and meditation. I think we can all agree that mental attitude is very important when we are coping with an illness. All of these alternative treatments are very helpful for many people in conjunction with but also instead of conventional treatments if that is the decision they make.

With regard to the explanatory memorandum, the Bill has a narrow remit, which is to ensure that patients are not given false hope through advertisements for treatments that have no scientific credence. However, even with regard to treatments that have scientific credence, science is not perfect. Hope can be relative and I would not like to destroy anybody's hope by telling people they cannot do this or that. While we need a deterrent for unscrupulous businesses advertising treatments that are taking advantage of cancer sufferers, the big pharmaceutical companies are also taking advantage of cancer patients by charging extortionate prices for drugs. During Leaders' Questions yesterday, I raised the issue of how our publicly funded universities and research institutes do the work to create these drugs and then sell the patent to pharmaceutical companies. The universities and research institutes need more capacity building and support to enable them to include conditionality with the patent and ensure the drugs in question are accessible and affordable. I gave the example yesterday of a new drug for cancer developed by the University of Pennsylvania at a cost of $150,000. Novartis is now selling it for $475,000. There are many similar examples of this practice. The research and development is publicly funded but after that, there is a gap and pharmaceutical companies can do what they like. We know they are driven by their shareholders' profit.

The other difficulty cancer patients face is delays in accessing medicines. We know that there is a median 623-day wait between the licensing of new oncology medicines by the European Medicines Agency and the date on which they are made available in Ireland. Within the European Union, only Portugal, Lithuania and Estonia experience longer delays. A total of 42% of new oncology medicines licensed by the European Medicines Agency between 2015 and 2017 were available in Ireland in 2018 compared with 68% in Belgium, 94% in Austria and the Netherlands and 97% in Germany and the UK. I know from the Taoiseach's reply yesterday that Ireland is involved in the BeNeLuxA initiative, which involves collective bargaining and that is really good. In 2016, the European Council under the Dutch Presidency made some very strong recommendations. If it could be on the Irish agenda to push that to get the momentum going, implementation in place and a co-ordinating mechanism, that would be very helpful.

Returning to the Bill, I was contacted, as were others, by the Irish Association of Master Medical Herbalists. The association is concerned that the Bill could have unforeseen and unintended consequences, particularly for the complementary and alternative medicines sectors and therapists. It is of the view that the application of the proposed legislation, as it is currently constituted, could be used to clamp down on these practitioners or, under the most extreme interpretation, prohibit them from practising. We must respect those who, for many reasons, take the decision not to use drugs and ensure they are supported in what they have decided to do. The Bill needs to strike a balance by enabling people to try the alternative route while ensuring they are not taken advantage of by those who are out to make money under false pretences.

We have spoken about cancer and I acknowledge the work of oncologists, particularly oncology nurses. We need trained oncology nurses to be involved with patients so that we do not rely on nurses in training.

It is difficult to discuss this Bill with its narrow remit without looking at the wider aspects of cancer treatment such as the availability, affordability and accessibility of drugs. We must also take into account people's views and beliefs, which must be respected. We know that mental attitude is very important so if I, as a person with cancer, believe that "A" is the road for me, that must be respected, while keeping in mind the need for balance. Advertising claims of health benefits without proof are very damaging, particularly if they impact on people's already fragile health.

I thank Deputy O'Connell for introducing this Bill. I was sorry that I could not attend the beginning of the debate but I am very pleased to have the opportunity to be here this afternoon. I will start with the issue raised by Deputy Maureen O'Sullivan, namely, the cost of drugs. She very kindly and accurately noted that Ireland has joined the BeNeLuxA initiative, which is a potential game changer for our country in terms of access to medicines because we have joined with Belgium, the Netherlands, Luxembourg and Austria to work together, not just potentially on the procurement of drugs but also on sharing information and horizon scanning. Yesterday and the day before, officials from all of those countries met at a gathering hosted by the Department of Health to look at how we can put in place a horizon scanning initiative to identify what new medicines are coming on to the market over the next 12 months and plan how we will ensure citizens can access them. That is really encouraging.

Deputy Maureen O'Sullivan makes a fair point because none of us, including Deputy O'Connell, wishes for there to be any unintended consequences. Of course, people can access various therapies. That is not in dispute here. The aim is to ensure no false linkages are made between accessing those therapies and a claim that something is a treatment for cancer. We have all seen, as Deputy O'Sullivan stated, the potential for false claims or, on some occasions, manipulation of somebody in a very vulnerable position. That is the balance we are trying to strike. This is never about blaming the patient or citizen. Rather, it is about safeguarding our citizens and making sure they have accurate information regarding medical and scientific advice on how we cure and treat cancer. There is only really one source of factual information about how we can treat and cure cancer, namely, our medical and scientific communities.

I know this Bill is of great interest not only in this House but also to cancer patients, advocacy groups, families of cancer patients and the medical professionals who care for cancer patients.

These are people who are committed to providing professional, high quality and appropriate treatments to patients in their care.

I thank all Deputies for contributing to the debate on this issue today and I particularly commend my colleague, Deputy Kate O'Connell, on her leadership yet again on another really important public health matter. I know she put much work into developing this Bill and engaged with a number of advocacy groups and patient organisations to get the Bill to this point. I assure her of my support as we work together to ensure we can advance the objectives that this Bill outlines. Under the National Cancer Strategy 2017-2026, the primary aim for all cancer services is to provide evidence-based care that is effective, safe, of high quality, patient-centred and fully supported by national standards and clinical guidelines. That is the goal of the national policy. There will be no tolerance for anything other than this professional standard of care and the intention of the Bill as presented has a similar objective, which I highly commend.

Whereas the aim of the Bill is in line with the national cancer strategy regarding the standard of patient care expected, there are some aspects of the Deputy's Bill, as outlined by my colleague, the Minister of State, Deputy Catherine Byrne, requiring further examination. I am pleased that Deputy O'Connell and I will work together with officials in the Department of Health to develop an approach to progressing its aims. I hope the health committee will do some pre-legislative scrutiny on the Bill as well. The aim of this Bill is to stop vulnerable people being targeted by falsehoods and untruths. Unfortunately, we have seen the effect of similar tactics of using misinformation when it comes to vaccination. The effect of anti-vaccination myths is apparent, and it is sad that those myths are sometimes advocated by people in this House as well. I have called for a cross-party motion supporting our childhood immunisation programme and our human papillomavirus vaccine, and I hope all Deputies in the House will sign up to it and stop putting forward the spin of "anti-vaxxers". That has a very damaging effect on the health and well-being of our children and our population at large, not just in Ireland but globally. There is a responsibility on us all and particularly those of us who hold public office to prevent the spread of this dangerous nonsense.

I welcome the fact that some social media giants have responded to the call for action made by me, Deputy O'Connell and others. They have a responsibility to ensure they do not become a platform for misinformation and I welcome the fact that some of them have made progress in that regard. I call on the rest of those companies to join in being much more responsible in that regard. The onus does not stop with social media giants and there is a responsibility on those in the media to call out politicians or leaders who spread misinformation and nonsense about vaccination. There is no doubt the Government has a responsibility to work with clinical leaders to protect public health but all of us in this House, and in the wider sphere as citizens, have responsibilities to the greater public good. Deputy O'Connell has been a leader in this area and she continues to fight for patients and against those who target them with falsehoods and misinformation. I am very proud to stand with her and I look forward to working with her to ensure the intent of the Bill is delivered to the public and, most important, to those cancer patients and their families who are battling with cancer in all its forms. They must face enough struggle in the fight against cancer without being targeted with falsehoods and misinformation. That is why I am proud to support the objectives of this Bill and I look forward to working constructively with the Deputy to ensure its objectives are brought into law.

Question put and agreed to.