Category: Featured News
What is the Medical Innovation Bill and How Will it Help Mesothelioma Patients?
Last week we reported about Mavis Nye’s support of Lord Maurice Saatchi’s Medical Innovation Bill. Today, we go into detail about the bill and how it can benefit mesothelioma patients living in the UK.
February 24, Lord Maurice Saatchi of the House of Lords hosted a panel of experts in a live, Google Hangout session as he launched the public consultation period of the Medical Innovation Bill. The Secretary of State for Health, Jeremy Hunt, requested a public consultation period for the bill “that gets the views of patients on the right balance between innovation and safeguards. A consultation that hears from clinicians on the problems they face in innovating and how to overcome them.”
Secretary Hunt is an advocate of the bill, and has said publicly that he supports the Bill and that he will make it law if the public and medical professionals demand it.
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Secretary of State, Jeremy Hunt
“We must create a climate where clinical pioneers have the freedom to make breakthroughs in treatment.”
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“The hangout was hugely successful,” Lord Saatchi’s spokesperson, Liz Scarff, wrote in an email to MesotheliomaHelp of the Feb. 24 launch event. “It enabled us to extend the launch beyond the walls of Parliament directly to the public.”
Hoping to build on the momentum of the launch event, Lord Saatchi and proponents of the bill are in the midst of a public outreach campaign encouraging the public, medical professionals and patients to comment on and support the bill.
“Secretary Hunt needs to understand that the Saatchi Bill is something that the public, patients and also clinicians want,” added Ms. Scarff. “To this end, we need as many people as possible to respond to the consultation.”
What Is the Saatchi Bill?
Lord Saatchi penned the bill, also known as the Saatchi Bill, after his wife of 27 years died from ovarian cancer in 2011. Lord Saatchi watched as her health declined and doctors followed “standard procedure” for her care. “The treatment was degrading, medieval and ineffective, and they knew it would lead to her death,” Lord Saatchi wrote in a guest article in the Telegraph.
Doctors in Great Britain primarily only offer treatments that have been approved for their patients’ particular condition and that are part of standard procedure. For mesothelioma survivors, such as Mavis Nye, who have been told there are no more treatment options, it means that there are no more treatments approved for mesothelioma. Potentially, though, there is another drug that is effective on another type of cancer or disease that could benefit her. However, doctors will not present another option for fear of a medical negligence lawsuit. So they either try the same things that were not effective in the first place, or they do nothing.
“The risk of doing nothing is not nothing. The risk of doing nothing is fatal – fatal every single time,” said Alex Smith, CEO of Harrison’s Fund, a nonprofit organization dedicated to fighting Duchenne Muscular Dystrophy of which his son suffers, who spoke during the February 24 launch of the need to pass the Saatchi Bill. “The time is now; we don’t have time to waste.”
Lord Saatchi hopes that by offering medical professionals protection from the law, if they follow the protocol of the new bill, doctors will have the confidence and drive to be innovative and try other treatments on their patients who are out of options.
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Lord Maurice Saatchi
“We need to say loudly and clearly we want to try new treatments for cancer where the old ones are known to lead only to death.”
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“It [the Bill] will allow good doctors who have the best interests of their patients at heart to deviate away from standard procedures and innovate, safely and with the protection of the law – as long as what they plan to do follows a clear set of actions,” as explained on Tumblr.
“We need a better balance between defensive medicine and innovation,” said Lord Saatchi during the launch event. “This bill shifts the balance towards innovation.”
Benefit for Mesothelioma Patients
Many doctors have stepped up and offer their support of the bill. Dr. Robert Lefever, addiction specialist who blogs for the Daily Mail, is a supporter of the Saatchi Bill. In a recent blog, Lefever says, “The Medical Innovation Bill intends to make it easier to define what is sensible and permissible innovation and, by contrast, what is reckless experimentation.”
Under the new bill, patients can demand innovation by asking: “Have you tried everything?” “Are there any other potential treatments available that you can offer me that are not standard procedure?” This innovation, however, comes with the risk of the unknown. According to the Saatchi Bill experts, “this risk needs to be balanced against the risk of the known – a standard treatment that is unlikely to work.”
“For mesothelioma patients facing a difficult prognosis, and with no treatment options left, if you want you can ask your doctor to try something new – and you can assure your doctor that the Bill will support him or her in stepping outside standard procedures – as long as the doctor fulfills the procedures set down in the Bill,” said Lord Saatchi. “The Bill will then allow the doctor to try new treatments without the risk of being sued.”
The consultation event runs through April 25. Secretary Jeremy Hunt will support the legislation at the conclusion of the public consultation. Visit the “Take Action” section of the Saatchi Bill on Tumblr or the Medical Innovation Bill comment section via the Department of Health to show your support. Also, follow @SaatchiBill on Twitter or on Facebook for daily updates.
The good news for Mavis Nye who said, “I want the bill now,” is that the Bill will be enacted immediately at the conclusion of the consultation period, (assuming no new clauses are added as it passes through Parliament.)
“Currently, the Bill is enacted as soon as the Queen gives it Royal Assent,” according to Ms. Scarff. “We hope it will stay like that – there is no time to waste.”
Sources:
- Gov.UK
https://www.gov.uk/government/news/medical-innovation-doctors-and-patients-encouraged-to-give-views - Harrison’s Fund
- House of Lords Google Hangout
https://www.youtube.com/watch?v=9uxwl0e-DcU - Jeremy Hunt’s Written Ministerial Statement
- Lord Saatchi Bill: We must liberate doctors to innovate
http://www.telegraph.co.uk/news/health/saatchi-bill/10598161/Lord-Saatchi-Bill-We-must-liberate-doctors-to-innovate.html - The Saatchi Bill
http://saatchibill.tumblr.com/ - The Telegraph
http://www.telegraph.co.uk/news/health/saatchi-bill/10657747/Lord-Saatchi-launches-the-consultation-on-his-medical-innovation-bill-live.html - University of Leicester
http://www2.le.ac.uk/offices/press/press-releases/2014/february/leicester-expert-on-asbestos-related-cancer-to-speak-at-the-house-of-lords - Dr. Robert Lefever
http://saatchibill.tumblr.com/post/75679150130/fearful-doctors-in-a-war-against-inertia
Mesothelioma Warrior Mavis Nye Offers Support to Lord Saatchi and His Medical Innovation Bill
Mavis Nye is no stranger to the spotlight. Since she stepped out in 2010 at the Mesothelioma UK Conference in London to share her story of mesothelioma and to fight for more effective treatments for all mesothelioma patients, Mavis has made sure that the plight of mesothelioma victims is heard. On February 24, Mavis’ voice was heard around the world when she took a seat next to Lord Maurice Saatchi of the House of Lords as he launched the public consultation period of the Medical Innovation Bill.
The bill, introduced by Lord Saatchi and referred to as the Saatchi Bill, is intended to “help doctors innovate new treatments and cures for cancer and other diseases” without fear of retribution, as explained on Tumblr. Doctors will be able to “deviate away from standard procedures and innovate, safely and with the protection of the law” in order to offer patients effective treatments. For mesothelioma patients, like Mavis, who have exhausted their treatment options, this bill could mean the difference between life and death.
“I back this innovation bill. And when do I want it? I want it today, because I might not be here tomorrow,” said Mavis during the panel discussion as she talked about the importance of the bill to her.
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Mavis Nye
“I want it today, because I might not be here tomorrow.”
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https://www.facebook.com/globalgenes
Mavis is Passionate About the Bill
Mavis has been battling mesothelioma for nearly five years. After countless procedures, surgery, radiation, and four rounds of chemotherapy, her doctors told her she has no more treatment options. But Mavis isn’t about to give up, so every day she surfs the internet hoping to find a breakthrough in cancer care that will give her one more chance at halting the growth of her mesothelioma. Although Mavis has not yet found her silver bullet, her quest has led her to become one of the biggest proponents of Lord Saatchi’s proposed bill.
Mavis stumbled upon the Saatchi Bill during her research one day. She immediately realized the benefits this bill could offer her, and other terminally ill patients, and she joined the social media campaign as she turned to Twitter and Facebook to encourage her friends and followers to join her in supporting the bill. Mavis’ passion and excitement about the bill brought her the invitation to sit on the Google Hangout panel discussion with Lord Saatchi and other patients, family members and medical experts.
The Saatchi bill could revolutionize the way patients are treated in Great Britain. “This bill will not cure cancer, but it will encourage the man or woman who will,” said Lord Saatchi.
In Mavis’ case, doctors could look beyond mesothelioma-approved treatments and consider treatments that have been approved for other cancers or diseases, such as breast cancer, that share some of the same characteristics as her cancer. The bill will allow doctors to implement new methods of use for an old medicine.
“That is more than a doctor would dare do today without the bill because they fear they could be sued,” Mavis explained in an email to MesotheliomaHelp.
An Invitation Brings Mesothelioma to the Forefront
Mavis’ outreach prior to the public consultation event had a snowball effect leading Lord Saatchi to highlight mesothelioma during the event. Mavis extended a personal invitation to Brian Sullivan of Verastem, a U.S. pharmaceutical company. Sullivan, in turn, invited Professor Dean Fennell, one of the world’s leading mesothelioma researchers, of the University of Leicester, who was then asked by Lord Saatchi to sit on the panel. Sullivan and Prof. Fennell collaborate on the global clinical trial COMMAND (Control of Mesothelioma with MAiNtenance Defactinib).
Many late-stage cancer patients and other seriously ill patients, whose best chance at an effective treatment are clinical trials, are shut out of Phase I and Phase II clinical trials in the UK. Professor Fennell was asked if the bill would make a difference for clinical trials. He said he hopes that with this bill when researchers and doctors see “encouraging, exciting results in a drug,” they may be able to follow the U.S. by allowing a drug to be approved without a full trial.
“I’m terminally ill anyway, and I’ve signed a consent form, so why can’t I have a Phase I trial,” added Mavis. “I would try anything,” she said later in a BBC interview.
http://www.bbc.co.uk/programmes/b03w64sz
Raising Awareness of Mesothelioma Continues Long After the Event
Mavis recounted her whirlwind day at the Parliament in her daily blog, Living with Mesothelioma. She and her husband Ray, who accompanied her, were up at 5:00 am and were not back home until 8:30pm. Mavis had a very full day in London of sitting on the panel, being interviewed by various newspapers and journals, being photographed with the group, and still more interviews. All of the resulting articles have been highly popular in Great Britain, and throughout the world.
Even several days later, Mavis continued to champion the cause for mesothelioma, as the media vied for comments directly from her, and she sat for interviews with the BBC and the local newspaper, the Kent Gazette. Twitter and Facebook continue to light up cheering on Mavis Nye, and encouraging the woman who, while fighting for her own life, is making a difference for all mesothelioma patients.
“You were extraordinary, and I take my hat off to you,” Lord Saatchi said to Mavis in an email after the event.
Tune in next week: Mesothelioma Help Cancer Organization goes into detail about the Saatchi Bill and how it will benefit patients in the UK.
Read Mavis’ inspiring story as she fights mesothelioma and enjoys life with Ray and her family.
Visit the “Take Action” section of the Saatchi Bill on Tumblr or the Medical Innovation Bill comment section via the Department of Health to show your support. Also, follow @SaatchiBill on Twitter or on Facebook for daily updates.
Sources:
- BBC Interview
- House of Lords Google Hangout
https://www.youtube.com/watch?v=9uxwl0e-DcU - Kent Online
http://www.kentonline.co.uk/canterbury/news/washing-my-husbands-clothes-has-13427/ - The Saatchi Bill
http://saatchibill.tumblr.com/ - US FDA
http://www.fda.gov/forconsumers/consumerupdates/ucm387513.htm
Jobs in Naval Shipyards That Put Civilian Workers at Risk of Mesothelioma
Civilians have worked in naval shipyards for decades – often working side by side with enlisted men and women. Many of these shipyard workers are now suffering from mesothelioma or other asbestos-related diseases. Although there are many different types of jobs in which veterans and civilian shipyard workers may have been exposed, these five are among the most common:
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- Electricians. Electricians commonly worked on naval ships installing wiring systems, fixing and upgrading existing electrical systems, replacing older fuse boxes with circuit breaker boxes and repairing electrical equipment, generators and transformers. They also installed motors on pumps, electrical wire, boxes, fuses and conduit. They also were exposed to asbestos from pumps and turbines. Electricians likely encountered asbestos that was used as insulation wrap around conduits, electrical transformers and piping as they worked in enclosed workspaces. According to the National Institute for Occupational Safety and Health, electricians are one of the largest construction trades associated with malignant mesothelioma mortality.
- Machinists. The Navy has employed shipyard machinists for decades to work on equipment to be installed above and below deck in ships, including:
- installing steam boilers, winches, propellers and propulsion motors
- making gaskets and seals
- overhauling pumps
- overhauling valves
- using portable grinders
The types of equipment machinists worked with produced heat and generally contained asbestos gaskets and packing. Many had asbestos coverings. Working with asbestos material generates asbestos dust. It was very common for machinists to wear aprons and gloves when handling hot materials.
- Steamfitters/Pipefitters/Insulators. Pipefitters and steamfitters installed and maintained the pipe systems for propulsion and heating. They handled asbestos gaskets and seals. Insulators cut and installed asbestos insulation in bulkheads and hulls.
- Painters. Professional painters worked in naval shipyards and on ships and may have been exposed to asbestos, as many of the products they used contained asbestos additives. Those include textured paints, caulks, spackling and joint compounds. They may have been exposed when sanding, scraping, taping and preparing surfaces for painting. They also worked in areas with asbestos-containing equipment including pumps and valves.
- Welders. Welders were employed at naval shipyards to weld equipment and pipe. Welders may have used gloves when welding. Welding rods may have also contained asbestos. A 2010 study published in the American Journal of Industrial Medicine identified welders as among the highest risk occupations for developing mesothelioma.
- Engineers. Engineers were commonly involved in the design, construction and renovation of naval ships and were often present at job sites to oversee the process. These engineers now have a higher occupational risk of contracting mesothelioma.
All of the above jobs may have exposed veterans and Navy civilian workers to asbestos and are at risk of developing mesothelioma. Veterans were likely to be exposed to asbestos as late as the 1990s – only 20 years ago.
Failure to Warn Can Make Manufacturers, Distributors & Sellers Liable
Asbestos manufacturers, distributors and sellers knew that asbestos products increased the risk of developing mesothelioma. However, they failed to warn shipyard workers about these known dangers.
This failure makes manufacturers liable for asbestos-related injuries – even if your exposure occurred 20, 40 or 60 years ago. The statute of limitations for most asbestos lawsuits doesn’t begin to toll until you discover that you’ve been injured – not when you were exposed.
Contact an experienced mesothelioma injury lawyer today to analyze your situation and determine your legal options so that you can make an informed decision about what’s right for you and your family.
Jobs on Navy Ships that Put Veterans at Risk of Mesothelioma
Veterans who worked on Navy ships often worked directly or indirectly with asbestos and are at a greater risk of developing mesothelioma and other asbestos-related diseases.
Although there are many different jobs that exposed Navy veterans to asbestos, these seven jobs on Navy ships put veterans at a very high risk of developing mesothelioma:
- Boilermen. Boilermen, also referred to as boiler tenders, boilermakers, boiler technicians and boiler repairmen, operated, repaired and maintained the powerful steam boilers that propelled US Navy vessels. These men and women were exposed to the dangerous fibers through the widespread use of asbestos in boiler rooms in valves and valves on ships.
- Engine Mechanic. Engine mechanics were generally responsible for the operation, maintenance and upkeep of numerous types of equipment, such as engines and turbines, anchor equipment and pumps. This equipment used asbestos – and released deadly fibers when repairs had to be made.
- Maintenance Mechanic. Maintenance mechanics repaired a wide range of machinery aboard ships, including pumps and valves. Their duties generally required them to handle and remove asbestos gaskets, and packing from equipment. Once asbestos is broken, it releases fibers that, when inhaled, cause those who breathe the fibers to have a greater chance of developing mesothelioma.
- Shipfitter / Pipefitter / Steamfitter. Shipfitters, pipefitters and steamfitters, maintaining the structural integrity of the hull and the deck, connect pipes to equipment and help repair machinery. Shipfitters’ duties often included cutting, shaping and replacing asbestos packing and gaskets. Pipefitters and steamfitters also installed and repaired pipe systems for propulsion, electric power and temperature control. They also often handled gaskets, seals and insulation laced with asbestos.
- Hull Technician. Hull technicians are responsible for numerous tasks, including:
- installing, maintaining and repairing valves, piping, plumbing system fittings and fixtures
- pipe cutting, threading and assembly
- repairing installed ventilation ducting
- installing and repairing insulation and lagging
- operating marine sanitation systems
Hull technicians were also exposed to asbestos in insulation materials, packing, electrical seals and pipe gaskets.
All of the above jobs exposed veterans to asbestos in one way or another and are only some of the many jobs that exposed millions of civilian workers and veterans to asbestos. For questions, check out our FAQ page.
Holding Manufacturers, Distributors & Sellers Responsible
Asbestos manufacturers, distributors and sellers knew that asbestos products increased the risk of contracting mesothelioma and other asbestos-related diseases. However, they failed to warn civilian workers and veterans about the known dangers of asbestos – thereby preventing them from protecting themselves by wearing respiratory protection.
Every manufacturer has a legal duty to warn of their products’ known dangers. When they don’t, they can and should be held responsible for their actions.
Navy veterans, civilians and their families may have a claim against asbestos manufacturers – even if exposure to asbestos occurred 50 or more years ago. The statute of limitations for filing most asbestos lawsuits isn’t triggered until you discover that you’ve been injured such as when you receive a diagnosis of mesothelioma.
Anyone who has been injured is encouraged to contact an experienced mesothelioma injury attorney who understands this debilitating and deadly disease and knows how Navy veterans and civilians were exposed.
SMART Protocol Shows “Encouraging Results” for Mesothelioma Patients
Researchers report that treating late-stage mesothelioma patients with a high dose of radiation prior to performing radical extra pleural pneumonectomy surgery results in “encouraging results” and should be further studied.
According to an article in the Journal of Thoracic Oncology, a study conducted by researchers from the Princess Margaret Cancer Center in Toronto with 25 patients with malignant pleural mesothelioma, who were deemed candidates for EPP, underwent SMART treatment [Surgery for Mesothelioma After Radiation Therapy.] The patients had a three-year survival (72%) that was more than double the survival (32%) of patients who underwent other treatment protocols.
Mesothelioma, a terminal form of cancer caused by exposure to airborne asbestos fibers, often has a complex growth pattern making complete surgical removal a very difficult task. The goal of surgery is to achieve a macroscopically-complete resection, which refers to the removal of all visible tumor cells. There has been an ongoing debate among mesothelioma physicians as to the best surgical approach for improving the survival of mesothelioma patients.
Extrapleural pneumonectomy (EPP) is a radical and complex surgery that features the removal of the affected lung and parietal pleura, as well as the possible removal of the diaphragm, the pericardium and other extra pleural tissue. The alternative surgical option, pleurectomy/decortications (P/D) strips away the diseased membrane lining the lung and visible mesothelioma tumors, but spares the lung.
The research, led by Marc de Perrot, MD, Princess Margaret Cancer Center in Toronto, included giving the previously untreated mesothelioma patients five doses of Intensity-Modulated Radiation Therapy. IMRT enables the radiation oncologist to conform the radiation beams to tumors that are actually wrapped around other structures. Within one week of receiving IMRT, the patients underwent EPP.
According to an article in MedPage Today, de Perrot reports an additional 20 mesothelioma patients have undergone SMART treatment and their three-year overall survival is approaching 90%.
The researchers concluded that the results support “future studies looking at long-term outcome in patients with epithelial subtypes [of mesothelioma].”
Mesothelioma is diagnosed in approximately 3,000 Americans each year. The average survival time varies from 4 – 18 months after diagnosis.
Sources:
MedPage Today
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