Mesothelioma Warrior Medical Innovation Bill

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.

Expert Insight

Mavis Nye

“I want it today, because I might not be here tomorrow.”

Share on Facebook:
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

World Health Organization Reiterates All Forms of Asbestos Cause Cancer

The World Health Organization and the International Agency for Research on Cancer issued a joint statement Feb. 19 stating that all forms of asbestos cause cancer in humans and stopping the use of all forms of asbestos is the most efficient way to eliminate diseases caused by asbestos such as mesothelioma, a cancer of the lining of the chest and abdominal cavities.

The joint statement came in response to an article published this month in The Lancet medical journal raising questions about the IARC ‘s participation in a conference in Kiev, Ukraine and potential conflicts of interest. The IARC is participating with the Russian Scientific Research Institute of Occupational Health in a study of cancer among chrysotile workers in Asbest, Russia. The lead author of the research is Evgeny Kovalevsky, who is a promoter of chrysotile asbestos. The IARC is providing epidemiological expertise for the study.

Several prominent American health researchers including Richard Lemen, retired U.S. Assistant Surgeon General, sent a letter to the IARC saying it was unacceptable that a scientist who is a promoter of asbestos should be a lead investigator on an IARC research project. The authors of the letter noted that the World Health Organization had previously withdrawn the Russian Scientific Research Institute’s designation as a WHO collaborating center because of the institute’s conflicts of interest with the Russian asbestos industry.

In the joint statement, the WHO and IARC said the study on cancer among chrysotile asbestos workers in Asbest, Russia will provide important scientific data to quantify the risk of cancers known to be related to chrysotile, the most commonly produced asbestos fiber. In addition it may be useful in quantifying the risks of additional cancers suspected to be related to chrysotile asbestos exposure. The IARC acknowledged receiving a number of emails urging the agency not to participate in the conference.

The IARC and WHO said they take conflict of interest seriously and use a rigorous process to protect research.

According to the Lancet article, the timing of the IARC attendance at the conference and decision to collaborate in the study are particularly sensitive on the eve of an upcoming meeting of countries participating in the Rotterdam Convention. The attendees at the conference will discuss the listing of chrysotile to the Rotterdam Convention, which would require countries that import chrysotile asbestos to give prior informed consent of the health hazards it poses. Russia which has an active asbestos industry, may try to block the addition to chrysotile to the list of hazardous substances.

The heaviest burden of asbestos cancer is currently found in the United State, European countries, Australia, Japan and South Africa, according to a 2012 article in the British Journal of Cancer. The highest consumption of asbestos is in China, Russian, India, Ukraine, Thailand, Brazil and Iran, signaling that those countries will have increases in mesothelioma and asbestos-related cancer deaths in the future.

Approximately, 2,500 to 3,000 people in the U.S. die each year of mesothelioma. It is a devastating disease. Most people who are diagnosed with mesothelioma were exposed to asbestos in a workplace or during military service decades ago.

Sources :

Lancet article
http://secure.jbs.elsevierhealth.com/action/cookieAbsent
joint statement
http://www.who.int/mediacentre/news/statements/2013/response_lancet_20130219/en/

New Report: Incidence Of Mesothelioma More Than Doubled in Ireland Since 1990s

A new report on cancer trends by Ireland’s National Cancer Registry says the incidence of mesothelioma among men in Ireland has doubled since the 1990s and will continue soaring during the next decade. Mesothelioma is a cancer of the thin lining of the lungs and abdominal cavity.

Despite large year-to-year variations in the number of cases of pleural mesothelioma diagnosed on the Emerald Isle, the report says the incidence of pleural mesothelioma among men has more than doubled since 1994 from an average of 13 cases per year in 1994-96 to 36 cases in 2009. The researchers project the number of cases will increase to 68 cases of mesothelioma per year in men by 2020.

Most people encountered asbestos on the job. Approximately 97 percent of men and 82 percent of women diagnosed with mesothelioma inhaled asbestos fibers in a workplace.

Pleural mesothelioma develops in the lining of the chest cavity and is by far the most common form of the disease. Ninety four percent of the cases of mesothelioma in men and 75 percent of the cases in women in Ireland were malignant pleural mesothelioma.

Mesothelioma is largely linked to chronic exposure to asbestos in male-dominated jobs. Of the mesothelioma patients in Ireland whose occupations were documented, half were construction workers, electricians, carpenters, metal workers and woodworkers. More than five times as many men as women were diagnosed with mesothelioma. Mesothelioma is more prevalent among construction workers and workers in occupations exposed to asbestos in the United States as well.

While asbestos was used heavily in the United States starting during 1940s, asbestos was mostly used in Ireland from the 1960s to the 1980s. Ireland began phasing out the use of asbestos in the 1990s and its use was generally banned under European Union regulations in 2000. Because of the long latency period of 20 to 40 years between asbestos exposure and appearance of mesothelioma, researchers in Ireland project the incidence of mesothelioma will peak in 2020.

The majority of pleural mesothelioma patients were between 60 to 80 years of age when diagnosed. Chemotherapy has become an increasingly common form of treatment for mesothelioma. Almost 60 percent of male and female patients with mesothelioma received chemotherapy from 2005 to 2010.

Yet, pleural mesothelioma has a poor prognosis. More than 70 percent of mesothelioma patients enrolled in the cancer registray since 1994 died within one year of diagnosis.

Source: National Cancer Registry, Ireland

Medical Milestone: Gene Therapy Drug Approved To Fix Genetic Code Typos

Mark your calendar: A new era in medicine has begun.

The European Union has licensed for sale the first gene-therapy drug in the Western world. Gene therapy is a type of medicine that treats disease by replacing defective genes with functioning genes. It holds great potential for treating diseases caused by defective genes, though it has remained largely experimental and confined to research laboratories to date. One day, patients with mesothelioma may benefit.

The European Commission on Friday granted approval to Glybera, a gene therapy medicine that treats a rare inherited disorder called lipoprotein lipase deficiency (LPLD), according to the BBC News.

http://www.bbc.co.uk/news/health-20179561

People with the extremely rare disease are unable to produce enough of an enzyme to digest fat properly. Fat levels in the blood may increase dramatically. A person with the enzyme deficiency may suffer life-threatening pancreatitis attacks as well as early onset of diabetes.

The drug developed by a Dutch company, UniQuire, in a single injection that contains a gene that helps the body produce the necessary enzyme.

According to The Wall Street Journal, the European action is a milestone for the field of gene therapy. In an article in the WSJ, Len Seymour, a professor of gene therapy at Oxford University who is unaffiliated with Glybera, said the approval begins to exemplify what genetically coded medicines can do.

UniQure plans to file an application with the U.S. Food and Drug Administration next year, seeking regulatory approval for the drug, the company said in a statement. No gene therapy medicines have been approved in the United States so far.

Researchers have been studying the effectiveness of gene therapy in treating various diseases in clinical trials since a landmark discovery in 1989 that an abnormality in one gene caused the disease cystic fibrosis. That led to the premise that doctors could treat a patient’s disease by identifying an abnormal gene mutation and replacing the defective gene with a corrected copy. But scientists have run into many set backs in the development of gene therapy.

While the initial applications of gene therapy are likely to involve rare diseases that may be cured by replacing a single defective gene, researchers also are exploring the potential of gene therapy for treatment of cancer including mesothelioma, a cancer caused by asbestos exposure.

The University of Pennsylvania has an ongoing gene therapy clinical trial for patients who are newly diagnosed with mesothelioma and patients whose cancer has not responded to other treatments. Patients receive a combination of chemotherapy and a new type of gene therapy called immuno-gene therapy that uses a modified common cold virus to trigger the patient’s immune system to destroy cancer cells. The doctors have been encouraged by the response of mesothelioma patients receiving the experimental treatment, Dr. Daniel Sterman an associate professor at the University of Pennsylvania said in a news release.

http://www.uphs.upenn.edu/news/News_Releases/2011/12/igt-cancer/

Approximately 2,500 to 3,000 people are diagnosed with mesothelioma each year in the United States. Most are older workers, retired workers and veterans who were exposed to asbestos fibers decades ago in a workplace or in military service.

Know more about mesothelioma and how you can deal with it.

Mesothelioma Cases Increasing in Australia and United States

The first report of a new national registry of mesothelioma in Australia shows that 27 people per million population are diagnosed with mesothelioma. That is nearly double the incidence of mesothelioma in the United States. Still it likely represents an undercount of mesothelioma cases in Australia due to delays in coding some diagnoses. Australia has one of the highest rates of mesothelioma in the world, according to the report by Safe Work Australia, a government agency that promotes worker safety and health.

According to the report, men accounted for 85 percent of the reported cases of mesothelioma since the new registry became operational in July 2010. Three-fourths of the people with mesothelioma were 65 years or older when diagnosed. The most common diagnosis was malignant pleural mesothelioma, a cancer of the lining of the chest cavity. Pleural mesothelioma represented more than nine out of every 10 diagnoses.

The overall rate of mesothelioma has been increasing in Australia since 1982 when data on new cases first became available, according to the report. Similarly, a 2009 report by the National Institute for Occupational Safety and Health indicated that deaths from mesothelioma are still increasing in the United States, based on data from 1998 through 2005. The overall rate in the U.S. is 14 deaths per million population per year. But only a half dozen states in the U.S. have mesothelioma rates of 20 per million population or greater, according to NIOSH.

Building materials containing asbestos and other asbestos products were widely used in Australia just as in the United States in the decades after World War II. As of August 2012, there had been 310 deaths of people diagnosed with mesothelioma in 2011 in Australia. Mesothelioma is an aggressive form of cancer and many people are not diagnosed until the cancer has reached an advanced stage.

Construction workers and people in building trades and electrical trades had the highest likelihood of exposure to asbestos, leading to a mesothelioma diagnosis in Australia. Currently in the United States, an estimated 1.3 million construction workers and general industry workers are potentially being exposed to asbestos, according to the U.S. Centers for Disease Control.

Historically, Australia has been one of the world’s highest users of asbestos, which was mined down under. Because of the long lag time of 20 years to 50 years between exposure to asbestos and appearance of the disease, the report predicts that incidence of mesothelioma in Australia likely still increasing and has not peaked.

Category: International News