Month: March 2015

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/

13,000 North California Veteran Claims Ignored, Say Whistleblowers

• Brian Eckert
• Veterans

Five whistleblowers at a Veterans Benefits Administration (VBA) regional office in Oakland, California say that more than 13,000 veteran requests for disability benefits were deliberately—and illegally—not replied to, reports CBS News.

sanfrancisco.cbslocal.com/2015/02/25/oakland-whistleblowers-say-veterans-being-denied-benefits

The Veterans Benefits Administration is the arm of the Department of Veterans Affairs (VA) that provides disability compensation and other entitlements to former military members and their families.

Claimants are allowed to file what’s known as an informal claim with the VBA in order to establish an effective date for benefits. By law, the VBA must respond with a formal application to the claimant, who then has one year to complete the application. If the veteran’s claim is approved, he or she is entitled to a retroactive lump sum payment based on the effective date established by the informal claim.

But according to CBS, the Oakland VBA office ignored more than 13,000 informal claims received between 1996 and 2009. When a team was assigned to process those claims two year ago, supervisors told team members to mark them “no action necessary”.

One whistleblower, Rustyann Brown, said she voiced concerns over the claims and was taken off the project.

“We were getting letters from elderly veterans and from widows who were literally at the end of their life, begging for help,” Brown said. “The VA didn’t help them. The VA didn’t care about them. They took [the claims], they put them in a file, and they stuffed them away.”

Brown says that many of the veterans were owed money. At the very least, they were owed an answer from the VA.

Report Underscores Importance of Having VA Claims Representative

The VA’s recent history of claims mismanagement is one reason why veterans and their families should work with an experienced, VA-accredited claims representative.

Rather than filing an informal claim with the VA, your best chance of a successful benefits application lies in submitting all necessary documents at one time (known as a Fully Developed Claim, or FDC). A claims representative will make sure that all paperwork and evidence requirements needed to obtain VA benefits are properly filed and let you know what to expect next in the application process.

A claims representative helps not only veterans but also their survivors. In some cases, the spouses and children of deceased veterans are not even aware that they are entitled to benefits.

The CBS report describes how Dorrie Stafford, whose husband’s claim was ignored by the Oakland VBA, didn’t realize there was such a thing as widow benefits. These benefits include things like help with burial expenses, monthly compensation, and educational assistance.

And veterans themselves may not be aware that having an asbestos-related disease such as mesothelioma or lung cancer can entitle them to disability compensation.

Veterans and survivors can find out whether they qualify for disability compensation and get started with the application process using our VA benefits guide.

Please keep in mind that receiving VA benefits does not disqualify you from filing a lawsuit against the asbestos companies responsible for your asbestos exposure.

If you have questions about benefits or applying for them, or you want to know more about an asbestos lawsuit, please contact Belluck & Fox.

You served your country. Now we are here to help you.

Ask Jennifer: What Mesothelioma Symptoms Did Your Father Have?

• Joseph Belluck
• Faces of Mesothelioma, Mesothelioma

It seems like people who are diagnosed with mesothelioma all have a different story as to how their symptoms appeared. For my Dad, it began in the Summer of 2011, when he started having trouble catching his breath. He chalked it up to the extreme heat that we had that year, continued working and didn’t miss a beat.

His difficulty breathing continued to get more severe. He said he knew that there was something really wrong when we were walking outside in the Fall and he had to stop and take a break. He began to lose weight and was unbearably tired all of the time.

Because of his exhaustion, his personality even began to change. His usually unshakable, bubbly demeanor gave way to one of concern and fatigue. He would go to work, come home and take care of his ailing mother, and that was it. This man who was always ready to go was now increasingly becoming a homebody.

By the time Dad was finally diagnosed, he had lost around 30 pounds. He was struggling to work and continue on with daily activities. Once he had his pleurectomy, on February 15, 2012, he seemed like a different person. The lining of his lung was removed, and he became more like his old self immediately, having almost a new lease on life.

Everyone has a varying story with their symptoms and treatment, but this is the experience my family went through. We are thankful that he was correctly diagnosed and treated so quickly by amazing doctors and medical professionals.

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