UK Mesothelioma Community Reeling After Veto of Saatchi Bill

• Nancy Meredith
• Featured News

Less than a year ago, mesothelioma patients and other rare disease sufferers in the UK had their hopes pinned on the passage of the Medical Innovation Bill. At that time it seemed just a technicality that the bill would be signed into law, and now doctors would be innovating and trying new drugs on seriously ill patients. Instead, last month the supporters of the bill were dealt a devastating blow when the Liberal Democrats’ health minister, Norman Lamb, told Tory health secretary, Jeremy Hunt, that even though the bill passed the House of Lords, his party would not support it, according to a Feb. 28 article in the Telegraph. In fact, he said, the party would not even allow the House of Commons to debate it. “They have killed the Medical Innovation Bill,” said Lord Saatchi, who introduced the bill after the death of his wife from cancer, upon hearing of the defeat. “It is dead. By killing the Bill they have killed the hopes of thousands of cancer patients.”

Mavis Nye Makes an Appeal for Mesothelioma Patients

Mavis Nye, who has battled mesothelioma for over five years and championed the cause by working directly with Lord Saatchi, attending public consultation sessions, making herself available to the media for interviews, and posting vital information on social media, particularly felt the sting of defeat. “Nick Clegg [Liberal Democrat leader] has signed a death warrant to so many Mesowarriors suffering from Mesothelioma,” Mavis said to MesotheliomaHelp.”We are terminal and we need to be able to have every new drug that is out there.” The Medical Innovation Bill, as explained on the Medical Innovation Bill website, will help doctors to innovate new treatments and cures safely and responsibly for cancer and other diseases. And this is exactly what sufferers of rare diseases, such as mesothelioma, need in order to find an effective treatment. The disease, that is caused by past asbestos exposure, is primarily treated with chemotherapy and radiation, but typically recurs. Through innovation, doctors in the UK would have access to treatments proven beneficial on other diseases and cancers. However, without the bill, doctors fear lawsuits if a treatment, not approved for mesothelioma, were to fail. Mavis supported the mesothelioma community through her help with Lord Saatchi and a team of advocates who offered public consultations about the bill and gathered feedback from the public, patients and the medical community in order to address any concerns. Modifications were made, and the bill was “debated four times in the House of Lords, amended, improved and passed to the House of Commons unanimously with cross-party support from the Tory and Labour parties,” according to Alex Smith, CEO of Harrison’s Fund, a nonprofit organization dedicated to fighting Duchenne Muscular Dystrophy of which his son suffers. Yet, still, the bill failed due to concerns raised in the House of Commons. Mavis sent an email to Nick Clegg pleading for reconsideration of the bill, saying in part, “We Are Mesothelioma Sufferers, there is no cure, please help us and change your mind. ” “Please think again Mt Clegg.” Mavis received a response from Edward Simpson, Office of the Rt Hon Nick Clegg MP, with the following statement:

“As you are aware, the Bill seeks to encourage responsible innovation in medical practice by allowing doctors to use medicines which are outside of the usual range that are accepted for the treatment of a condition.  We must avoid the risk of any unintended consequences, which is why these proposals need to be looked at seriously by Government and considered in depth.”

“One day he [Nick Clegg] will feel very guilty about this I imagine,” said Lord Saatchi. “To do what he has done, to kill all these people’s hopes, is something that will haunt him.”

Still Advocating and Fighting for Passage

“I have enormous sympathy for all those who have been through the awful experience of not being offered treatment which they believe might offer a chance of survival or of improving their condition,” Norman Lamb wrote in a Feb. 28 article in the Telegraph. “But getting the law right in this area is incredibly important. We have to avoid the risk of unintended consequences.” Lamb added that appointing someone to examine the barriers to innovation and solutions to overcoming them it could “then lead to draft legislation, if it is deemed necessary, going through full parliamentary scrutiny later this year.” With that being said, and with so much time and effort  invested in the bill, Saatchi and his team are not giving up. They have continued to reach out to the members of parliament, hit social media hard and remain available to the media to help spread the word about the bill. “We want to generate a very quick petition to get the relevant politician, Nick Clegg, to undo his veto against the bill,” Dominic Nutt, director of communications at The Saatchi Cancer Initiative at M&C Saatchi, said to MesotheliomaHelp. The petition, set up on Change.Org by Alex Smith, requests the parliament to “Put lives before politics.” The goal is to get 5,000 signatures. Currently, there are over 3,800 supporters. For more information about the Saatchi Bill visit the Medical Innovation Bill website. Also, follow @SaatchiBill on Twitter or on Facebook for daily updates. Know more about Mesothelioma and how you can deal with it. Sources:

• Andy Burnham says LibDems’ decision to axe Saatchi Bill is ‘odd and wrong’
  http://www.telegraph.co.uk/news/health/saatchi-bill/11444892/Andy-Burnham-says-LibDems-decision-to-axe-Saatchi-Bill-is-odd-and-wrong.html
• Fury as Lib Dems kill off Saatchi Bill
  http://www.telegraph.co.uk/news/health/saatchi-bill/11437789/Fury-as-Lib-Dems-kill-off-Saatchi-Bill.html
• Lib Dems veto Saatchi’s medical innovation bill
  http://www.theguardian.com/politics/2015/mar/01/lib-dems-veto-saatchis-medical-innovation-bill
• Lord Saatchi’s drugs bill has been let down by politics
  http://www.telegraph.co.uk/news/health/news/11443310/Lord-Saatchis-drugs-bill-has-been-let-down-by-politics.html
• Norman Lamb: Why we had to axe Lord Saatchi’s Bill and think again
• Medical Innovation Bill
  http://medicalinnovationbill.dh.gov.uk/
• Medical Innovation Bill.
  http://medicalinnovationbill.dh.gov.uk/