Safety of Medicines and Medical Devices — House of Lords, 2019-02-28
Topic: Health
James Bethell (Conservative, Centre-right): My Lords, I start by congratulating the noble Lord, Lord Carrington, on a really touching and thoughtful maiden speech. We are all hugely moved by memories of his father, and many here will remember him with great fondness. He was a man who embodied the values of the House: courage, professionalism, public service and, very famously, a strong sense of discretion. From the evidence of his splendid maiden speech, the new Lord Carrington should have no fear of following in his father’s huge footsteps. I am sure he will make a powerful impression on the House, particularly in his chosen fields of finance, the rural economy and the arts. I thank the noble Lord, Lord O’Shaughnessy, for bringing this important debate to the House. I also thank the Library, which has produced a massive, 20-page blockbuster that tackles this technical subject with huge helpfulness. My main interest in the debate is in the area of drug development and the potential for a more agile approach to drug regulation. I am very grateful to those who have already spoken about medical paternalism and the growing scepticism of patients about medical and scientific authority It has been my experience of human nature that, when facing an adverse condition, people are prepared to suspend normal attitudes to risk. My father, the late Lord Bethell, suffered severely from Parkinson’s disease. I remember sitting with him in the office of the eminent Professor Tipu Aziz, a great expert in Parkinson’s. My father had avoided all contact with the medical profession for his entire life as an article of faith, but there was Professor Aziz suggesting that he wanted to drill a very large hole in the top of my father’s head and then inject his brain with an untested dopamine mixture. My father, a cautious man at best, thought this was an incredibly exciting idea and was 100% up for it. He was enormously frustrated when he did not qualify for the pilot. I think that is an indication of the changing attitudes that people have, as my noble friend Lord O’Shaughnessy mentioned, when they face medical adversity I must declare an interest as a trustee of the Scar Free Foundation. I shall tell the House another story: last year I visited the Centre for Conflict Wound Research, where I met members of the Casevac Club, which is like a modern-day World War II Guinea Pig Club. They are lending their bodies to medical research. There was an amazing veteran with no legs who had a massive scar across his entire torso. He was having a laser puncture his scar 400 times a second in a lattice formation on one side of his body but not the other, in an excruciatingly painful treatment, in order to get important data on the effectiveness of this new skin-healing process. I felt that this was an incredibly moving metaphor for the determination that some people show and the sacrifice that they are prepared to make for medical science My noble friend Lord O’Shaughnessy put it very well when he talked about those who live normal lives who expect a regime of safety. I want to talk about that. No one wants an uncontrolled Wild West approach to medical regulation. In fact, that would be utterly counterproductive to investment; I am aware that under certain circumstances when drugs are tested, early problems might prevent investment in later trials I highly recommend the report of the Panel on Monitoring the Social Impact of the AIDS Epidemic. That epidemic is fascinating, as the rulebook was essentially thrown out of the window in the mad dash for a cure, and there was essentially a patient mutiny. There was incredible progress and innovation, but there were also terrible mistakes. There were cul-de-sacs and snake oil, and less fortunate, poorer people did not get access to the right treatments. The financial costs were enormous, and the political pressure and risk tolerance were probably unrepeatable. I think we should try to learn the lessons of that episode. I am very grateful for a briefing from Professor Derek Alderson, president of the Royal College of Surgeons, who talked me through its recent Commission on the Future of Surgery. Its report speaks about the rising use of medical devices and the urgent need for a unified national medical devices registry to make it easier to keep track of what products are on the market and to measure performance and issues. I instinctively lean away from new regulations and registers, and I am aware of the #WeAreNotWaiting movement, which some noble Lords may have followed. However, given recent experiences, which have been spoken about so touchingly by Members of this House, including the noble Lord, Lord Hunt, and the noble Baroness, Lady Cumberlege, it would be wise to support this measure. I was utterly persuaded by his argument, and I urge the Minister to move forward on these recommendations, as indicated in the words of Jackie Doyle-Price in another place earlier this month By way of conclusion, I want to make the case to the Minister for an energetic approach to medicine development and data generation that allows for early and progressive patient access to medicine. The European Parliament has handily called this "adaptive pathways". For me, that phrase encapsulates a really good mixture of three essential ingredients: a thorough, data-driven approach to evaluation; a compassionate attitude to the natural human desire for cures; and a pragmatic recognition that patient feedback is an essential component of the research process. I am excited by the results of the European Medicines Agency pilot and by the UK’s accelerated access review, but my heart sank when I read about the slow pace of change. I urge the Minister to exert her considerable persuasive powers to put a red-hot fire under this process.