Mesothelioma Advocates Invited to Attend the Conference on Rare Diseases and Orphan Products

DIA and the National Organization for Rare Disorders (NORD) have announced the program for the US Conference on Rare Diseases and Orphan Products to be held Oct. 22-24 at the Capitol Hilton, Washington, D.C. With the motto, “Shaping the Future Now,” organizers invite all stakeholders – patients, patient organizations, researchers, drug and device companies, investors, thought leaders and government – to come together for three days to focus on rare diseases and orphan product research, development and access. In the United States, there are close to 7,000 rare or orphan diseases, including mesothelioma, thyroid cancer and cerebral palsy, affecting close to 30 million Americans.

The conference, organized in collaboration with FDA, NIH, EURORDIS, and the Duke Department of Pediatrics, will discuss the challenges facing orphan product development and access. In a press release announcing the program, Peter L. Saltonstall, President and CEO of NORD said, “This vital meeting will provide important information for everyone living with a rare disease or working in orphan product development.”

The conference will offer sessions focusing on three primary themes: research and regulation; risk tolerance for the rare disease patient; and special challenges in rare diseases. Topics include the current and emerging drug development environment, reenactment of the Prescription Drug and Medical Device User Fee Act, and an update on NIH’s new National Center Advancing Translational Science.

NORD is a non-profit organization that receives no government funding and relies entirely on private donations. The organization offers vital services to the public through providing information about rare diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.

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. Mesothelioma is diagnosed in close to 3,000 Americans each year, with just as many dying from the disease.

Mesothelioma representatives interested in attending the conference can register on DIA’s website.

Cancer Vaccine Shows Promise For Pleural Mesothelioma Patients

A new cancer vaccine that may stimulate the immune system of patients with malignant pleural mesothelioma is entering a new round of clinical testing after promising preliminary results.

The vaccine maker, Aduro BioTech, Inc., announced this month the enrollment of the first patient in a Phase 1B clinical trial for the vaccine CRS-207. Medical researchers at the National Cancer Institute in Bethesda, Maryland and the H. Lee Moffitt Cancer Center in Tampa are participating in the trial.

Malignant pleural mesothelioma is a cancer of the lining of the chest cavity caused by exposure to asbestos. Approximately 2,500 to 3,000 people are diagnosed with mesothelioma each year in the U.S. Most are older workers, retired workers and veterans exposed to airborne asbestos fibers at a workplace decades ago. Mesothelioma takes decades to appear after exposure, but then advances rapidly.

The human immune system is a key line of defense against mesothelioma tumors if medical researchers can harness it to attack cancer cells, using immunotherapy. The vaccine was created using genetically modified strains of Listeria, a common food-borne pathogen known to produce a potent immune response. Researchers at Aduro BioTech engineered the pathogen to make it safe for use as the vehicle for therapeutic vaccines.

An earlier trial using the vaccine showed promising results in prolonging the lives of patients with advanced cancer. While patients with end-stage cancer typically live only three to five months, six of 17 patients who received the vaccine in the initial trial lived 15 months or longer, according to results recently published in the medical journal, Clinical Cancer Research.

As part of the new trial, mesothelioma patients will receive two prime vaccinations with CRS-207 followed by treatment with the standard chemotherapy drugs, pemetrexed and cisplatin.

“This trial will evaluate our vaccine treatment for the first time in frontline cancer patients, and we predict a synergistic benefit to their standard chemotherapy,” said Dr. Dirk Brockstedt, senior vice president of research and development at Aduro.

The vaccine also is being evaluated in a randomized, Phase 2 trial involving patients with metastatic pancreatic cancer.

For more information about the clinical trial, visit ClinicalTrials.gov.

Band Member With Mesothelioma Rejoins Band in a Fundraising Event

For Don Smitley, playing bluegrass has been a big part of his life. Friday when he played with his band, the Dunbar Boys, he was celebrating his life and hoping to make a difference for others. Smitley was diagnosed with mesothelioma in January, and since then he has been focused on getting back on stage with his friends and band members. The band played at the Dunbar Festival over the weekend and used the opportunity to raise money to combat the deadly disease.

Smitley has received aggressive treatment at the New York University Langone Medical Center. Since his diagnosis, according to the Herald-Standard.com, Smitley underwent surgery and has participated in a clinical trial for six vaccine treatments that boost the immune system. In addition, he received chemotherapy and radiation.

Mesothelioma is an aggressive cancer caused by past exposure to asbestos that affects the lining of the lungs and abdomen. The disease is difficult to treat, with limited effective, treatment options. However, clinical trials offer patients options that may not otherwise be available.

Local residents and businesses donated baskets of goodies that were sold during the event. All proceeds are going to the Mesothelioma Applied Research Foundation. The Meso Foundation is a national non-profit dedicated to ending the suffering caused by mesothelioma by funding mesothelioma research, by providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research. The Mesothelioma Applied Research Foundation awards grants to the “best and most promising” mesothelioma research projects.

“I just thank the good Lord above for sending us to the right doctors, and with the good friends and the good family that I have who really pulled me through this,” Smitley said.

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.

Support Mesothelioma Research on National Mesothelioma Awareness Day

Today, Sept. 26, has been set aside as a day to raise awareness of the relatively unknown form of asbestos-related cancer: mesothelioma. National Mesothelioma Awareness Day, designated as such by Congress, is a day to not only raise the public’s awareness of the deadly disease, but to also encourage all Americans to help raise funds to combat the disease.

Cancer research is expensive and time-consuming, and for research related to a rare disease, such as mesothelioma, the costs can be even higher. Researchers rely on funding from public and private sources to run their clinical trials and to ensure continuous funding throughout the project.

NYU Cancer Institute Dedicated to Defeating Cancer

The NYU Cancer Institute of the NYU Langone Medical Center is one of many cancer centers dedicated to “defeating cancer” and to bringing an end to the suffering it causes. In addition to offering comprehensive cancer care, the Institute offers innovative treatments for mesothelioma and lung cancer patients.

Renowned mesothelioma expert Dr. Harvey Pass, Chief division of Thoracic Surgery NYU Langone Medical Center and Chief Thoracic Oncology NYU Cancer Center, leads the team of thoracic surgeons. Services offered to mesothelioma patients include clinical trials, minimally invasive surgery, state-of-the-art chemotherapy regimens, targeted radiation therapy and radiofrequency ablation and photodynamic therapy.

The NYU Cancer Institute of the NYU Langone Medical Center depends on private donations to further its research efforts, enhance clinical services, and expand its community programs to help more people overcome cancer. To help NYU Langone in its fight against mesothelioma visit the website today.

http://cancer.med.nyu.edu/how-you-can-help

You can also “like” MesotheliomaHelp.org on its Facebook page. For every “like” it receives, Belluck & Fox, a nationally recognized law firm that represents individuals with asbestos and mesothelioma claims, will donate $1 to the NYU Langone Medical Center.

Mesothelioma Applied Research Foundation

According to its website, the Mesothelioma Applied Research Foundation is a national non-profit dedicated to ending the suffering caused by mesothelioma by funding mesothelioma research, by providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.

Each year the Mesothelioma Applied Research Foundation awards grants to the “best and most promising” mesothelioma research projects. The Foundation instituted its grant funding program in 2000 and has since awarded over $7.6 million to critical research, encouraging scientists to devote their life-work to this rare, elusive cancer.

To support the efforts of the Mesothelioma Applied Research Foundation see its Donate Now link.

The above options are suggestions, but there are a vast number of other options available for providing financial support to mesothelioma research. Select the one that calls to you and your family and help make a difference in mesothelioma research.

Quick Facts About Mesothelioma

Mesothelioma is a malignant cancer of the lining of the lung and abdomen closely associated with inhaling microscopic asbestos dust.
Nearly 3,000 new cases of mesothelioma are diagnosed each year.
About 2,500 to 3,000 Americans die each year of mesothelioma and thousands more die of lung cancer related to asbestos.
The symptoms of the disease can take anywhere from 15-50 years to develop after exposure.
Mesothelioma is entirely preventable, but cannot be cured.

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

Mesothelioma Help Cancer News