Month: May 2012
NORD Honors Supporters of Mesothelioma and All Rare Diseases for Their Commitment to Improving the Lives of Patients
Next week the National Organization for Rare Disorders (NORD) will honor men and women who have made a difference in the lives of people with rare diseases. Rare diseases, such as mesothelioma, AIDS and muscular dystrophy, affect over 30 million Americans, and leave many with terminal illnesses and no treatment.
Due to the rarity of mesothelioma, an aggressive form of cancer caused by asbestos exposure, and all other orphan diseases, managing the disease and trying to find appropriate treatment can be overwhelming to the patients and their families. NORD offers vital services to the public through providing information about diseases, referrals to patient organizations, research grants and fellowships and other critical services for those battling a rare disease.
NORD will honor members of the U.S. Congress, patient advocates, medical researchers, and companies that have brought new therapies to market on Tuesday, May 15, at Union Station in Washington, DC. The award ceremony is part of NORD’s annual “Partners in Progress Celebration” that highlights how “stakeholders in the rare disease community work together toward their shared goal of improving the lives of patients.”
“This is NORD’s opportunity to celebrate excellence and to say thank you on behalf of the patient community to those who have advanced the cause during the previous year,” said Peter L. Saltonstall, NORD president and CEO. “We look forward to this event each year, and we truly appreciate the accomplishments it honors.”
Some of the NORD awards include:
National health leadership award, to honor leadership in public policy to improve the lives of patients and families affected by rare diseases, will be presented to North Carolina Senator (D) Kay Hagan, who introduced The Transforming the Regulatory Environment to Accelerate Access to Treatments (TREAT) Act, targeted toward getting treatments in a quick and safe manner to patients with orphan diseases.
Partners in progress corporate awards, to honor companies that have brought important and innovative treatments to market within the previous year, will honor Pfizer, Inc. for Xalkori, known generically as crizotinib, approved by the FDA with a companion diagnostic test to treat certain patients with late-stage, non-small cell lung cancers, and potentially mesothelioma patients, who express the abnormal ALK gene.
A disease is designated as an orphan disease when less than 200,000 Americans are affected by the disease at any given time. Mesothelioma is responsible for approximately 3,000 new cases of cancer each year in the United States. 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.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
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Mesothelioma Patients Can Join Push to Educate the Public About the Benefits of Palliative Care
When diagnosed with mesothelioma, many patients and their families quickly learn the definition of “palliative care.” Mesothelioma is an aggressive, incurable cancer that is difficult to treat. For these reasons, doctors often focus the treatment plan on palliative care, as opposed to curative, and aim for relieving the symptoms and improving the patient’s quality of life.
However, according to a survey sponsored by the Center to Advance Palliative Care and the American Cancer Society, 70% of the adults surveyed indicated they were “not at all knowledgeable” about palliative care, and another 8% had never heard of the term. Even non-palliative care physicians are not fully aware of what palliative care offers patients.
Can this be good? According to Dr. Diane E. Meier, director of the Center to Advance Palliative Care and professor of geriatrics and internal medicine at Mount Sinai School of Medicine, New York, the lack of knowledge about palliative care offers a huge opportunity to educate the public and to increase the number of palliative care medical specialists.
In a presentation at the annual meeting of the American Academy of Hospice and Palliative Medicine, Meier stressed that now is the time to educate physicians as well as the general public that palliative care is “actually about relieving the pain, symptoms, and stress of serious illness in patients of any age and at any stage of disease, and that palliative care can be delivered alongside curative or life-prolonging therapies.”
After the survey participants were educated about palliative care, 95% of those surveyed said it’s important for patients with serious illnesses and their families to learn about palliative care. Further, 92% of them admitted that they would likely consider palliative care for themselves and loved ones when needed.
Dr. Meier and her colleagues believe a nationwide campaign to educate Americans of the importance and effectiveness of palliative care will create a demand for palliative care, thus requiring a “big boost” in the workforce. Meier believes the current staffing level of palliative care specialists is so small “as to constitute a major barrier to access.”
To affect change in the perception of palliative care, and to grow the workforce, Meier and others are seeking funding for a 5-year, multi million-dollar social marketing campaign to increase public awareness regarding palliative care. Meier points out that there is one oncologist for every 145 cancer patients, and one cardiologist for every 71 myocardial infarction patients, but there is just one palliative care specialist for every 1,300 people with a serious illness.
The American Society of Clinical Oncology (ASCO) released new guidelines in 2011 regarding palliative care. ASCO encourages physicians to discuss a patient’s treatment options and preferences, including end-of-life care, immediately after their terminal diagnosis so the treatment can be individualized from the start. The patient will better understand how palliative care can be used as a complementary treatment option with chemotherapy or radiation, or as the last step in their care.
When stricken with pleural mesothelioma, patients and their doctors continually struggle to keep the patients’ lungs free of fluid while trying to shrink the tumors that constrict the lungs and limit the patients’ ability to breathe. Palliative care treatment is intended to control pain, stop bleeding, and relieve pressure, while chemotherapy focuses on limiting tumor growth. For many mesothelioma patients, palliative care offers them an opportunity to stay out of the hospital and spend more time with their loved ones.
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Pinpointing Proteins May Lead to New Mesothelioma Therapies
An international team including researchers in New York, Hawaii and Italy have pinpointed a protein known as HMGB1 as a key player in the development of malignant mesothelioma, a cancer associated with asbestos exposure.
The new study in the journal Cancer Research describes the role that HMGB1 plays in the growth of malignant mesothelioma. It also suggests the possibility of a novel therapeutic approach for mesothelioma patients.
Malignant mesothelioma is an aggressive and highly lethal cancer. Approximately 2,500 to 3,000 people in the U.S. are diagnosed with mesothelioma each year, and a similar number die of the disease. Most people diagnosed with mesothelioma are older workers, retirees and veterans who inhaled asbestos fibers in a workplace for an extended period of months or years. The microscopic fibers lodge deep in the lungs causing tissue inflammation. The disease develops slowly over decades.
In a previous 2010 study, a research team composed of many of the same medical scientists found that patients exposed to asbestos have higher levels of HMGB1 in their blood. HMBG1 protein is released when cells are damaged or when tissue is injured. The protein causes an inflammatory reaction.
In the latest study, the researchers said the presence of the protein influences the growth and survival of mesothelioma cells. When the researchers inhibited the HMGB1 using anti-bodies in laboratory mice, it reduced the growth of mesothelioma cells in the mice and extended their survival. Inhibiting HMGB1 interferes with the inflammation process.
The team of investigators including Haining Yang and Michele Carbone of the University of Hawaii Cancer Center and Harvey Pass of the New York University School of Medicine said their findings show that mesothelioma cancer cells rely on HMGB1. The research suggests that suppression of the protein HMGB1 using antibodies offers therapeutic promise as a new treatment for mesothelioma.
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Navy Veteran’s Award of $32 Million for Asbestos Exposure Among Largest NY Verdicts
A $32 million verdict awarded to a Navy veteran diagnosed with mesothelioma from exposure to asbestos aboard ships ranks among the five largest New York verdicts of 2011, according the legal publication Verdict Search.
The New York Mesothelioma law firm of Belluck & Fox represented Ronald Dummitt and his wife Doris Kay Dummitt, who accused asbestos manufacturers of recklessly failing to warn him about the health hazards of their products used on ships. Inhaling microscopic asbestos fibers causes mesothelioma, an incurable cancer that produces tumors in the lining of the lung and the abdominal cavity.
A New York jury in August 2011 awarded Ronald Dummitt, who served as a boiler tender and a Master Chief Petty Officer, and his wife $16 million for past pain and suffering and $16 million for future pain and suffering. The jury found that the asbestos manufacturers had acted with reckless disregard for the safety of others by failing to warn of the dangers of asbestos.
The jury determined that Dummitt developed pleural mesothelioma, a cancer of the lining of the lung, while serving aboard seven U.S. Navy ships between 1960 and 1977. Dummitt, who worked in the boiler room and fire rooms in the ship, was exposed to asbestos while repairing Crane Co.-manufactured valves, which involved removing and replacing asbestos containing gaskets, packing and lagging pads on each ship.
In addition, Dummitt was exposed to asbestos while working with Eliot Turbomachinery, Inc. – manufactured de-aerating feed tanks containing asbestos lagging pads and gaskets on one of the ships, the jury determined. The jury apportioned 99 percent of the responsibility to Crane and 1 percent to Eliot.
Navy veterans are among the workers most at risk of developing mesothelioma and asbestos disease. Asbestos materials were widely used on ships from World War II through the 1970s. Veterans who served on ships in the 1970s or 1980s may only recently have begun to experience symptoms of asbestos disease.
Dummitt said that he was originally diagnosed with pleural plaques, areas of scarring on the lining of the lung resulting from asbestos exposure in 2003. He began experiencing pain from accumulation of fluid on his lung and was diagnosed in April 2010 with pleural mesothelioma. Symptoms of mesothelioma often appear decades after exposure to asbestos.
“While no amount of money can restore Mr. Dummitt’s health, this mesothelioma verdict is just, and it represents all that we can do to set things right,” New York mesothelioma attorney Jordan Fox, a founding partner of Belluck & Fox, LLP said in a press release. ”The jury identified the culprits and the degree to which they contributed to his fatal disease, and to that extent, the truth prevailed. We are proud to have represented him.”
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