In the United States an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time.   In the case of mesothelioma, 3,000 Americans are diagnosed with the disease each year.  Rare Disease Day is an international advocacy day designated to raise public awareness of rare diseases and to bring widespread recognition of rare diseases as a global concern.

In the United States, NORD hopes to highlight rare diseases through two specific projects: Visions of Solidarity and Handprints across America. 

The Handprints across America initiative requests individuals to submit a picture holding the Rare Disease Day flyer depicting how they are raising awareness of rare diseases.  The photos will be displayed on the Handprints across America gallery.

Under the Visions of Solidarity initiative, the Rare Disease Day organizers invite “people to express their thoughts on this year’s international Rare Disease Day theme, ‘Solidarity’”.  A drawing, picture, computer graphic or short story can all be forms of expression for the theme.  These, too, will be posted on the gallery.

Through the special day, NORD encourages the U.S. public to help educate members of Congress about the challenges of living with rare diseases, and to let your legislators know that you care and that you vote.

The U.S. Food and Drug Administration (FDA) is offering the event, Rare Disease Patient Advocacy Day, on March 1 in Silver Spring, MD.  The FDA will host the day with a purpose “to enhance awareness of FDA’s roles and responsibilities in the development of products for the diagnosis, prevention, and/or treatment of rare diseases and conditions.”  There will be a simultaneous webcast.

Many Americans and Canadians have already taken up the cause by raising awareness of the dangers of asbestos in contributing to rare diseases.  Asbestos is a carcinogen and is known to cause asbestosis, mesothelioma and lung cancer.  The only way to prevent development of these diseases is through elimination of exposure to the toxic mineral.  To that end, the Asbestos Disease Awareness Organization, a national advocacy group for mesothelioma victims in the U.S., called upon Canadian Prime Minister Stephen Harper and President Barack Obama to stop the use of asbestos and eliminate asbestos-related disease.

Due to the relative rarity of mesothelioma, and other orphan diseases, managing the disease and trying to find appropriate treatment can be overwhelming to the patients and their families.  In fact, according to government statistics, between 85 and 90 percent of orphan diseases are serious or life-threatening, yet only about 200 of them currently have any effective treatments.

In a previous article, we reported that there are currently no effective, non-invasive methods for early detection or treatment monitoring for either lung cancer or mesothelioma.

Mesothelioma is a serious cancer most often affecting the lining of the lungs that occurs in individuals exposed to airborne asbestos fibers.  Asbestos is a known carcinogen and is also proven to cause asbestosis and lung cancer.  While pleural mesothelioma is not classified as a lung cancer according to the medical definition, the diagnosis and treatment of lung cancer and pleural mesothelioma are often similar.

Backman, professor of biomedical engineering at Northwestern University’s McCormick School of Engineering and Applied Science, and Hemant K. Roy, M.D., of NorthShore University HealthSystem, have been focusing on the use of biophotonic technology to develop a process to make early cancer detection “cheaper, more accurate and less invasive for an array of cancers.”  Biophotonics is a combination of biology and photonics, in which the researchers are able to take harvested cells and shine a light on them to determine whether lung cancer is present.  

The photons bounce off the molecular structures at different angles depending on whether the cells are healthy or not.  According to the researchers, the process is highly sensitive and can detect subtle abnormalities elsewhere in the body. Backman said they are able to see alterations in cells that are indicative of pre-cancer that could not be seen under a microscope. 

In a clinical trial at Evanston Hospital of nearly 100 lung and colon cancer patients, the results proved to be 90 percent accurate.  Roy said of the technology, “I think if this works, we could really make a big difference in how we treat patients.” 

The use of shining lights on cancer cells for detection is not new and is being researched in various other studies.  Cornell is researching “glowing dots” that would attach to cancer cells and glow during a PET scan.  In Austria, researchers are testing the use of fluorescence spectroscopy where a laser probe is shined on human tissue and the cells become “excited” by the light and emit a unique color indicating cancer. 

Lung cancer is the second leading cause of death in the United States and afflicted 157,300 Americans in 2010, according to federal statistics.  3,000 Americans die from mesothelioma each year.  Early detection of mesothelioma can positively influence a patient’s survival by increasing treatment options and improving their quality of life while battling the cancer.

According to a news article from McGill University, metformin “reduces the cellular mutation rate and the accumulation of DNA damage.”  The researchers report that while it is widely known that such mutations are directly involved in causing cancer, no other researchers have shown that the risk of developing cancer can be reduced by inhibiting the mutation rate. 

Pleural mesothelioma, a cancer of the lining of the lungs, is caused by breathing in asbestos dust.  The microscopic fibers penetrate the lungs and damages the healthy mesothelial cells.  In effect, asbestos damages DNA, the material within a cell that provides each person’s genetic blueprint, causing faults in genes that then leads to cancer.  If the DNA damage can be prevented, mesothelioma may not form. 

During the study, the researchers found that metformin, a drug used in the treatment of Type 2 diabetes, reduces DNA damage by reducing levels of reactive oxygen species (ROS). ROS are known to be DNA-damaging agents produced as by-products when cells generate energy from nutrients, according to the article. 

Dr. Michael Pollak, professor in McGill’s Departments of Medicine and Oncology, researcher at the Lady Davis Institute for Medical Research at the Jewish General Hospital and the study’s director,  said, “This study opens an exciting new direction in cancer-prevention research.”  He added while further studies are needed, “the possibility of protecting DNA from oxidative damage by the use of a well-tolerated drug was not expected.” 

Close to 3,000 Americans are diagnosed with mesothelioma yearly.  Although there is no cure for mesothelioma, it can be treated with varying degrees of success through the use of surgical procedures, chemotherapy and radiation. 

The full article was published in the journal Cancer Prevention Research.

Symptoms associated with lung cancer and mesothelioma include shortness of breath, persistent cough, pleural effusions (accumulation of fluid around the lungs), as well as acute pain.  The authors of the article, Steven I. Robinson, MBBS, and Timothy J. Moynihan, MD, both of the Mayo Clinic, Rochester, Minnesota, noted that primarily efforts by treating physicians are aimed at “prolonging survival” by focusing on shrinking the cancerous tumors. “Unfortunately,” they say, “we are prone to overlook symptoms that negatively impact quality of life.” 

Pleural mesothelioma is an aggressive, rare cancer affecting the lining of the lungs, and it can be very difficult to diagnose.  Once the disease has been identified, the patient is typically suffering from life-threatening complications.  In advanced cases, the physician may turn to palliative care.  Palliative care is aimed at relieving symptoms, without treating the cancer itself. 

Robinson and Moynihan suggest that oncologists should pay special attention to all patients by treating their symptoms “early and aggressively.”  They add that “there is a desperate need for studies focusing not only on disease-specific treatment but on symptom management as well.” 

The peer review was in response to the article “Comprehensive Management of Respiratory Symptoms in Patients with Advanced Lung Cancer” by Jessica McCannon, MD and Jennifer Temel, MD.  McCannon and Temel pointed out in their article that while palliative care is associated with better quality-of-life, less depression, and longer survival, some oncologists are hesitant to turn their focus on symptom management while active cancer care is still considered an option. 

Temel presented her findings encouraging early palliative care at the “The Science of Compassion: Future Directions in End-of-Life and Palliative Care” summit in August last year. 

Mesothelioma is one of the most aggressive and deadliest forms of cancer, with limited treatment options.   The prognosis for mesothelioma patients is dismal with the average survival time varying from 4 – 18 months after diagnosis.

Mesothelioma, which claims 2,000 to 3,000 American lives each year, is a usually-fatal lung cancer caused by inhaling tiny asbestos fibers. Because asbestos breaks down easily, a single exposure to asbestos can result in the disease. Mesothelioma may take several decades to manifest. 

The prior heavy use of asbestos left trade workers such as insulators, plumbers and pipefitters, electricians, sheet metal workers, auto mechanics, refinery and factory workers, construction workers and shipyard workers, and their families who breathed asbestos dust decades ago vulnerable to contracting asbestos-related diseases including asbestosis, mesothelioma and lung cancer. 

Although the use of asbestos has been curbed in the United States since the late 1970s, researchers at the University of Hawaii (UH) Cancer Center recently reported that the incidence of mesothelioma has been increasing in the United States and will continue to do so.   In fact, the researchers estimate that more than 20 million people in the United States are at risk of developing malignant mesothelioma due to asbestos exposure.

The American Cancer Society report attributes the decline in cancer cases to advances in cancer screening and treatment.  However, as previously reported, the existing cancer screening tools are inadequate and ineffective as screening tests for mesothelioma.  Although scientists have been working hard to develop one, typically diagnosis is not made until symptoms are advanced and the patient is suffering from life-threatening complications. 

The American Cancer Society estimates a total of 1,638,910 new cancer cases and 577,190 deaths from cancer in the United States in 2012.

The article was written by award-winning journalist and the blog’s editor, Wade Rawlins, and exemplifies the useful legal and medical news and information about asbestos-related diseases that mesothelioma advocates and asbestos attorneys regularly highlight.

“Our law firm is pleased to be able to provide this important content to people who want to learn more about asbestos and the legal and health issues that are caused by being exposed to this toxic mineral,” said Joseph W. Belluck, whose law firm focuses on mesothelioma litigation.

“In addition to helping those whose lives have been impacted by asbestos exposure to obtain compensation for the losses they’ve suffered, our law firm wants to increase awareness about the dangers of asbestos,” he said. “Our blog has been especially effective in getting this message out to the public.”

Rawlins’ AboutMesothelioma.net article provides a variety of facts to readers, including:

• Exposure to asbestos increases the risk of developing asbestosis, a scarring of the lungs due to retained asbestos fibers, as well as malignant diseases such as mesothelioma.  Mesothelioma is a deadly cancer of the lining of the lungs, chest or abdomen that is highly aggressive and resistant to many cancer treatments.
• Most cases of asbestos are diagnosed 10 years or more after a person is exposed to the mineral. In some cases, the asbestos disease appears 40 or 50 years after exposure to the asbestos fibers.
• Asbestos-related disease has been diagnosed in veterans (particularly Navy veterans), trade workers who were exposed to asbestos dust on the job and people who lived with the workers and were exposed to the mineral through second-hand exposure.
• Approximately 3,000 people are diagnosed with mesothelioma each year in the U.S.

To read the complete article, or to research information through an archives section that dates back to January 2008, see AboutMesothelioma.net.

NMVB is provided through a collaborative effort of the Departments of Biomedical Informatics, Epidemiology, and Pathology at the University of Pittsburgh, and funded by a grant from the National Institute of Occupational Health and Safety of the Centers for Disease Control and Prevention (CDC).  CDC provided $5 million of funding in 2010 to keep the bank operating for another five years. 

This virtual bank links data associated with specimens collected and stored at different institutions across the United States. The NMVB provides real-time access to all information for the mesothelioma tissue sample including demographic, epidemiologic, pathologic, genotype, and follow-up data associated with biospecimens. 

NMVB has over 1,000 biospecimens including: paraffin embedded tissue, fresh frozen tissue, and developed mesothelioma tissue microarrays (TMAs) with associated multimodal data annotation. 

While the database and specimens were intended for research studies for mesothelioma, the NMVB Steering Committee noted in their November 7, 2011, meeting minutes that legal experts have been requesting specimens in support of mesothelioma lawsuits.  During a mesothelioma lawsuit, medical experts are often requested to assist with the interpretation of medical information.

The Steering Committee agreed that the use of these specimens and the data during a legal action is beneficial, but they expressed concerns that this limits the number of specimens available to active researchers.  Ideally, lawyers will return the specimen at the end of the lawsuit; however, the committee is concerned with quality assurance of the returned samples.

Biospecimen and associated data sets are applied for and evaluated by the Research Evaluation Panel (REP), an independent scientific review group, before releasing the information.

Now, researchers report in the Journal of Clinical Oncology that psychosocial interventions for patients had “medium-size effects” on both pain severity and pain interference in adults with cancer.  

Researchers from Columbia University in New York City reviewed studies published between 1966 and 2010 of cancer patients.  The review yielded thirty-seven papers for which measures of pain severity and pain interference could be assessed.  From this information, the authors concluded, “These robust findings support the systematic implementation of quality-controlled psychosocial interventions as part of a multimodal approach to the management of pain in patients with cancer.” 

According to the International Association for the Study of Pain (IASP), the primary psychosocial intervention used to manage pain is cognitive-behavioral therapy.  The therapy typically includes education focusing on explaining how a patient’s feelings can influence the intensity of the pain.  The patient is then shown how their thoughts, feelings, and behaviors can be used to cope with, and lessen, the pain.  Finally, the patients are shown how to develop a program for managing their pain and how to “overcome setbacks and relapses in their coping efforts.”

Over half of the pleural mesothelioma patients suffer pain in the lower, back and sides of the chest.  Sufferers of peritoneal mesothelioma may experience pain in the abdominal area, whereas pericardial mesothelioma patients experience the most pain with symptoms including chest pain, heart palpitations, shortness of breath, and constant and acute coughing.  IASP estimates that pain is experienced by 25% of newly diagnosed cancer patients and by 60% to 90% of patients with advanced cancer. 

Memorial Sloan-Kettering Cancer Center (MSKCC) is conducting a study to learn about how mesothelioma affects patients’ emotional and physical well-being.  To learn more about the MSKCC study entitled “Mesothelioma From a Patient Perspective: A Survey of Psychosocial Needs and Exploration of Online Support for Patients” see ClinicalTrials.gov.

“Too many lives in America and around the world have already been lost due to asbestos exposure,” said Belluck, a partner in the New York City personal injury firm of Belluck & Fox, LLP. “To protect people from more asbestos-related diseases, the asbestos that remains in the Canadian mines should be left in the ground.”

At one point in the 20th century, Canadian mines were the source of 85 percent of the world’s supply of asbestos — a carcinogenic product that has caused countless deaths from mesothelioma and other asbestos-related cancers and diseases.

As of 2010, Canada was responsible for about 5 percent of worldwide asbestos production, according to the U.S. Geological Survey. That supply was cut off when the last two asbestos mines in the Canadian province of Quebec stopped operations in 2010.

While this marked the first time since the 1880s that no asbestos was mined in Canada, it might not be a permanent halt. In a Canadian Press article, the president of one of the mining companies insisted that his mine is not closed. It is merely awaiting a loan guarantee from the Quebec government so it can access new deposits that could turn out asbestos for another 50 years, he said.

However, many in Canada are urging the government to bar the asbestos mines from resuming operations, including Susan Henry, whose family founded Canada’s first asbestos mine in 1878. Henry told the Montreal Gazette last week that she is participating in a letter-writing campaign that calls on the government to end the country’s exportation of asbestos.

Belluck, the New York mesothelioma lawyer, supported the activists’ calls for keeping the Canadian asbestos mines shuttered.

“I have seen the tragic consequences that asbestos has had for countless people in this country who were exposed to the cancer-causing fibers. It is simply inconceivable that our neighbor would still allow companies to mine and export asbestos when its tragic consequences are so clear,” Belluck said.

His firm represents victims of asbestos exposure who have developed diseases related to the substance. One type of cancer caused by asbestos is mesothelioma, a disease that often lies latent for decades after exposure before aggressively attacking victims’ ability to breathe. There is no known cure for mesothelioma, and most patients die less than two years after diagnosis.

Because asbestos-related diseases usually cause rapid deterioration after symptoms appear, Belluck said it is important for patients to seek prompt medical help from specialists. They should also contact a qualified mesothelioma attorney for aggressive legal representation to ensure that they and their families secure all of the compensation they are entitled to receive.

About Belluck & Fox, LLP
Belluck & Fox, LLP, is a nationally recognized law firm that represents individuals with asbestos and mesothelioma claims, as well as victims of crime, motorcycle crashes, lead paint and other serious injuries. The firm provides personalized and professional representation and has won over $400 million in compensation for clients and their families.

Partner Joseph W. Belluck is AV-rated by Martindale-Hubbell and is listed in Best Lawyers in America, New York Magazine’s “Best Lawyers in the New York Area” and in Super Lawyers. Mr. Belluck has won numerous cases involving injuries from asbestos, defective medical products, tobacco and lead paint, including a recent asbestos case that settled for more than $12 million.

Partner Jordan Fox is a well-known asbestos and mesothelioma attorney who has been named to the Best Lawyers in America, New York Magazine’s “Best Lawyers in the New York Area” and to Super Lawyers. On two separate occasions his verdicts were featured as the National Law Journal’s Largest Verdict of the Year. He recently secured verdicts of $32 million and more than $19 million on behalf of individuals who had contracted mesothelioma from asbestos exposure.

In September, Belluck & Fox, LLP, won a coveted spot on a list of America’s best law firms, which was published jointly by U.S. News & World Report and Best Lawyers magazine. The listing showcased 8,782 different law firms ranked in one or more of 81 major practice areas.

For more information, contact the firm at (877) 637-6843 or through the online contact form.

Joe Paterno, famed Penn State football coach, died Jan. 22, just 72 days after being diagnosed with metastatic small-cell lung cancer (SCLC).  According to the National Institutes of Health, the lung cancer that killed Paterno is one of the most aggressive forms of lung cancer and is found in just 15% of all lung cancer cases.  The key to increased life expectancy when battling this type of cancer, and other extremely aggressive cancers such as pancreatic cancer and mesothelioma, is early detection.

Unfortunately, while many in the medical field debate whether the current highly sensitive mammogram and PSA test for breast cancer and prostate cancer, respectively, are beneficial preventive measures, researchers have yet to develop an effective lung cancer screening tool.  Although the National Cancer Institute (NCI) identifies chest x-rays, CT scans, PET scans and the bronchoscopy as tests used to diagnose lung cancer, these are only effective after a patient has presented with worsening respiratory symptoms.

Both lung cancer and mesothelioma, which is also a rare form of lung cancer and is known to be caused by asbestos exposure, often have symptoms such as a persistent cough, shortness of breath, fatigue and wheezing, that are similar to many other respiratory illnesses.  When a patient presents with these symptoms, doctors often first treat the patient for a respiratory infection before turning to testing for cancer.  By the time the cancer is diagnosed, it is in an advanced stage causing life-threatening complications.

“Lung cancer doesn’t have real symptoms until it’s too late and at an incurable stage,” Luzerne County pathologist Dr. Mary Pascucci said in a Scranton Times-Tribune article. “There are no ‘screening’ tests for lung cancer like we do for breast and prostate cancer, so the problem is that it’s found at a very late stage.”

Just as with mesothelioma, which is resistant to cancer treatments, combination chemotherapy and radiation treatment is given to SCLC patients. However, the treatment only helps relieve symptoms, and is considered palliative. It does not cure the disease.  Stopping tumor growth and preventing metastasis is especially critical for mesothelioma and lung cancer where the diseases are highly aggressive.  This can only be achieved if the cancer is detected early.

The primary cause for lung cancer is exposure to environmental hazards including tobacco smoke, asbestos and radon.  For Americans with a history of exposure to any of these chemicals, a screening tool that could quickly and effectively identify cancer in its earliest stage could save thousands of lives a year.  Treating a stage 1 cancer that has not yet spread is easier, and includes more treatment options, than trying to treat cancer that has spread, or metastasized, to several sites or throughout the body. 

Various studies are underway to find an effective lung cancer and mesothelioma screening tool.  Researchers at both the University of Texas MD Anderson Cancer Center and Massachusetts General Hospital Cancer Center have developed tests to detect circulating tumor cells.  These tests, while still in the early phases of testing, can detect lung cancer as well as determine the efficacy of the treatment.

Other potential early detection tests include Cornell’s “glowing dots” that would attach to cancer cells and glow during a PET scan, and an electronic nose to detect mesothelioma in exhaled breath.

An average of 437 Americans die from lung cancer every day, according to the Lung Cancer Alliance. Lung cancer is the second leading cause of death in the United States and afflicted 157,300 Americans in 2010, according to federal statistics.  3,000 Americans die from mesothelioma each year.