Month: March 2014
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
Impact of Mesothelioma to a Daughter Who Lost a Father to the Disease
Mesothelioma…a difficult word. A lot of people aren’t sure how to say it, let alone know anything about it. I used to be one of those people. All I knew about mesothelioma came from those commercials promising legal help. I didn’t know it was cancer, I didn’t know there was no cure, and I didn’t know how it would change my life forever.
When I hear the word “mesothelioma” now, a range of emotions run through me – fear, pain, heartache. Everywhere I go, I’m afraid that there might be asbestos around. I feel pain every time I think of someone being diagnosed with mesothelioma or undergoing surgeries and treatments. My heart breaks knowing that this disease took my Dad from me and knowing that others have gone through this same devastation.
All these sincere emotions aside, perhaps the most painful thing for me is that, in many cases, the general public who are lucky enough not to be privy to the world of mesothelioma, don’t take it seriously. There have been many times since Dad’s diagnosis where I have overheard people saying that asbestos is a joke, that it won’t hurt you. I always make it a point to step in and politely and calmly explain that that is simply not true. It’s something that I take incredibly personal; I feel as though I have to defend my Dad and all those in the mesothelioma community.
It is so important that the general public be educated on the dangers of asbestos and mesothelioma. It is for everyone’s protection. Knowledge and caution will help, but knowing that asbestos is still legal in the United States truly angers me. Meso is a completely preventable disease that we all need to protect ourselves against.
If you have questions about mesothelioma, contact the Mesothelioma Applied Research Foundation to find out more. Help to spread the lifesaving information they have worked so hard to provide, and continue to “Believe in a cure!”
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
Dr. Sugarbaker’s Legacy at Boston’s Brigham & Women’s Hospital
News is quickly spreading that Dr. David Sugarbaker will step down from his position as the Chief of Thoracic Surgery at Boston’s Brigham & Women’s Hospital effective April 30. Dr Sugarbaker is best known for his relentless fight against mesothelioma.
As a staff nurse who had the pleasure of working alongside Dr. Sugarbaker for the past 20 years, I feel honored and privileged to have had that opportunity. I could certainly go on and on about what a wonderful physician he is and how much he cares, but the bottom line is that he will be sorely missed. Dr. Sugarbaker was truly passionate about his patients he cared for and he did everything within his power to help them win the war against mesothelioma.
During his daily rounds to the ICU and other floors, his energy and radiance set the tone for the day, and that enthusiasm will be hard to replace. His presence was almost electrifying. He would offer hope to the sickest of the sick convincing the patients to move forward. The patient response was remarkable.
Dr. David Sugarbaker has accepted a new position as Director of the Texas Lung Institute at the Baylor College of Medicine and Chief of Thoracic Surgery in the Michael E. DeBakey Department of Surgery. He also will be named as The Olga Keith Wiess Professor of Surgery, Baylor College of Medicine.
Selfishly, all of us at Brigham and Women’s Hospital will miss him, but I believe the mesothelioma world will benefit greatly by sharing his expertise outside of Boston. Perhaps this played into Dr. Sugarbaker’s decision to move on, and I respect that decision.
During his 25 years of service at Brigham and Women’s, Dr. Sugarbaker has made significant contributions to patient care, research and teaching which include the establishment of the first lung transplant program in New England. He also founded the International Mesothelioma Program at Brigham.
Dr. Sugarbaker first came to Brigham in 1979 as a surgical resident. Upon completion of his residency in 1986, he left to obtain cardiothoracic training at the University of Toronto. He returned to Brigham and Women’s in 1988 as the Chief of the newly formed Division of Thoracic Surgery, a program which is now recognized as one of the best in the nation.
Dr. Sugarbaker has been focusing on pleural mesothelioma since 1988, and his contributions to the treatment of this devastating disease have helped countless patients and families who had no other options. In 2002, he founded the International Mesothelioma Program with the primary goal of finding a cure for this disease. This program is the largest of its kind and attracts patients from around the world.
Dr. Sugarbaker played a leading role in the establishment of the Tissue and Blood Repository at Brigham and Women’s Hospital in 1989. This was one of the first tissue repositories in the U.S. and has led to extremely fruitful collaborative research projects. He is deeply committed to teaching the next generation of physicians and has mentored hundreds of residents and fellows during his time at Brigham and Women’s. His contributions to education also include the establishment of a unique fellowship in thoracic oncology and a minimally invasive thoracic surgery fellowship, as well as a visiting scholar program for Thoracic Surgery.
Sources:
- Thoracic Surgery in the Michael E. DeBakey Department of Surgery
https://www.bcm.edu/departments/surgery/divisions/cardiothoracic-surgery - founded the International Mesothelioma Program with the primary goal of finding a cure for this disease
http://www.brighamandwomens.org/Departments_and_Services/surgery/thoracic-surgery/mesothelioma/default.aspx - The Olga Keith Wiess Professor of Surgery, Baylor College of Medicine
https://www.bcm.edu
Mesothelioma Patient Turns the Corner on Her Recovery
Last week the mesothelioma patient we have been following for several weeks was still very sick with infections, air leaks, and respiratory failure she developed after her surgery. She was very depressed, as was her family, as they were not expecting such a rough recovery. The family has been very frustrated, and they started second-guessing their decisions and began to wonder what their loved one really wants for her care. They held a family meeting where they decided to re-assess in one more week. Fortunately, there have been small but steady gains during the last week – the woman’s infections have subsided, she is gaining strength and her attitude has become more positive.
In talking with her husband and daughters, who are in their early twenties, I got to know what kind of person the woman is as well as how much this sickness is affecting them too. Finding themselves in the role of caregivers is foreign territory. When asked to describe what their day looks like, they explained that it starts early with a call to the ICU to see what kind of a night their loved one had. Then it is on to the hospital where they spend as much time as possible with their wife and mother. It includes time spent in the waiting room with family members of other patients, some much older patients with mesothelioma who are doing better than their loved one. Then they meet with the doctors for their daily update.
Thankfully, their loved one has a team of primary nurses who know her well and feel like part of the family at this point. Today, one of their favorite nurses is on duty. She is upbeat and personable – does she have any idea what that means to them? They say they do not have to worry about the “numbers” or their mother being too sick to ambulate – when they know this is vital to any chance at recovery. The hours go by slowly. They talk about how they try to deal with so much uncertainty – their wife/mother is the ‘director’ of the family and she guides them all through life. She would be the one who could tell them if they should go back to work or school, or if they should spend so much time with her. They want her to help direct them as to what to do now.
There have been guidelines all along for patients without complications; but their case is unique. Uncertainty clouds every decision. What if one goes back to school and their mother takes a turn for the worse and dies? Should they be thinking like that- it is reality- that it is a possibility. They describe being paralyzed with indecision as they wait for their “director” to tell them what to do. Mostly, they describe a situation so foreign to anything they have gone through as individuals or a family.
Emotional exhaustion has turned to physical exhaustion for all of them. They play the ‘what if’ game. What if she recovers, but she is in pain? What if her infections get worse, should they continue the same treatment? All those conversations about what she would and would not want are echoing in their heads. Luckily, their loved one’s health is improving.
Mesothelioma has been held at bay for another day.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
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