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Mesothelioma: Once Hopeless Cancer, on the Verge of Promising Advances

October 26, 2015
Mesothelioma, the word, (pronounced mez-uh-thee-lee-oh-muh) is often much better known than the illness it represents. The legal issues surrounding this cancer make mesothelioma, the most expensive keyword on Google (while most keywords cost pennies, the keyword mesothelioma can cost over $300 per click).

Mesothelioma, the illness, is a cancer that most often affects the lining of the lung or abdomen; it has no cure and treatment options for patients are few. Prognosis is generally considered poor, at less than 10% survival at five years post diagnosis. The vast majority of mesotheliomas are associated with exposure to asbestos, with the latency between exposure and disease development ranging between 20-50 years.

Diagnosis of mesothelioma has always been difficult, mostly because initially its symptoms are quite general (shortness of breath, general malaise, pleural effusion, gastro-intestinal problems). In addition, because of the long latency between exposure to asbestos and disease development, patients and their doctors aren’t led to a diagnosis quickly, thereby wasting valuable time that could have been used to begin treatment.

When the Mesothelioma Applied Research Foundation began its operations in 1999, mesothelioma was a cancer largely ignored by the scientific community. At that time, virtually no research funding was available for it, and consequently, patients found themselves with little hope and sadly, very little time to live.

The Mesothelioma Applied Research Foundation is an organization dedicated to eradicating mesothelioma and ending the suffering caused by this aggressive and incurable cancer. The Meso Foundation, as it’s often called among patients (or MARF by busy scientists), does so by funding peer-reviewed research, by providing education and support to patients and their family members, and by advocating Congress for an increased federal investment into mesothelioma research. To date, the organization has allocated over $9 million of its own funds and has directed over $10 million of Department of Defense (DoD) funding toward important research in the field of mesothelioma.

Changing Times

Despite the poor prognosis, patients today who are able to obtain a quick and accurate diagnosis, and expert guidance to treatment options (like state-of-the-art clinical trials) can live long and fulfilling lives, with good, if not excellent, quality of life. The Meso Foundation’s executive director and expert nurse practitioner, Mary Hesdorffer, APRN, is well known in this community as someone able to understand a person’s particular diagnosis (mesotheliomas are treated differently and by different experts depending on the type and site presentation) who can then help them navigate the best path through most effective mesothelioma treatment options.

Changing Faces

For years, mesothelioma has been known as a cancer that strikes predominantly older males because of their past occupational exposures. Most recently, however, the Meso Foundation has found that more than ever before men and women in their 20s, 30s, and 40s are contacting the Foundation for help.

Changing Policy: National Mesothelioma Patient Registry

Today, the field of mesothelioma research is at a turning point.  At a time when more clinical trials are available for this cancer than ever before, the challenges have shifted and morphed.

For example, mesothelioma still doesn’t have a patient registry, a fact that makes it difficult for researchers to track and understand patterns that could be useful in improving survival. Patient registries and databases constitute key instruments for the development of clinical research, the improvement of patient care and healthcare planning, as well as social, economic, and quality of life outcomes, which is why  it critical to establish one for mesothelioma.

Recently, a bi-partisan bill to create just such a registry has been introduced in Congress by Rep. Katko of New York. The Mary Jo Lawyer – Spano Mesothelioma Patient Registry Act of 2015 (H.R. 3284) came about in March of 2015, when a Meso Foundation advocate, Meg Meccariello, met with her member of Congress, John Katko. Being a mesothelioma patient herself, having a sister with mesothelioma, and having lost her father and another sister, Mary Jo Lawyer Spano, to mesothelioma, Meg immediately caught Congressman Katko's attention. It so happened that the Congressman knew Mary Jo well and even attended her funeral. To help garner support for the bill, visit the Foundation’s Action Center.

Mesothelioma Awareness Day

Every year since 2004, the Meso Foundation has led the charge in acknowledging September 26 as the Mesothelioma Awareness Day. On this day, the goal is to “paint the world in mesothelioma awareness,” and wear blue to demonstrate the wide impact of this cancer. As part of its Mesothelioma Awareness Day activities, the Meso Foundation is also hosting a conference open to the public in New York City, which brings together major area experts, patients, their family members, and advocates.  The conference will be preceded by a gathering and cameo of the mesothelioma community on Rockefeller Plaza during the broadcast of the Today show, and activity that has become a tradition within this community.

To donate to the Mesothelioma Applied Research Foundation, click here.