Today is National Rare Disease Day, an important day for awareness of illnesses like mesothelioma. A rare disease constitutes any disease with less than 200,000 diagnoses a year. With mesothelioma at roughly 3,000 cases a year, it is fair to say this disease is rare even on the spectrum of rare diseases. In fact, there could be 65 times the cases of mesothelioma every year and it would still qualify as a rare disease.

The purpose of National Rare Disease Day is to educate people about a disease of which they may have never even heard; to voice our concerns to legislators and the public about a disease that affects working-class men and women and over a third of our military veterans.

Rare diseases like mesothelioma hardly get the kind of funding common diseases get. This is illuminated by the lack of precision diagnoses and treatments for mesothelioma patients.

FDA Approved Treatments for Rare Diseases

Unfortunately, most rare diseases don’t have any FDA-approved treatments. Admittedly, it’s hard to conduct research when there is an inappreciable number of diagnoses each year.

It wasn’t until 2004 that there was even an FDA-approved chemotherapy treatment for pleural mesothelioma. That drug was Alimta in combination with cisplatin and, although it has only slightly improved survival, it was a huge breakthrough. Especially since researchers had struggled for decades to find a chemotherapy drug with even a minute effect on survival.

There are several clinical trials currently in the works and many of them have serious potential. However, they are far from an FDA approval—a huge vote of confidence in the treatment’s efficacy. To reach this point, advocates have to push for more funding for research efforts.

Funding Research for Rare Diseases

National Rare Diseases Day shines a well-needed spotlight on diseases like mesothelioma. This kind of awareness is fundamental to garnering capital to support research for mesothelioma, which received about 0.2% of the amount of funding that breast cancer did in 2012.

Of course, more common cancers affect more people and rightly deserve more funding. However, rare diseases are often forgotten, left in the dark. The people in charge of funding cancer research need to hear the voices of families, patients and advocates in order to know about the disease.

The importance of funding and research can partially be seen in the survival rates of mesothelioma compared to more common cancers. The 5-year survival rate for common cancers is amazing compared to mesothelioma.

The Relationship Between Research Funding and Survival Times

According to the American Cancer Society, nearly 100% of Stage I breast and prostate cancer patients survive more than five years. By contrast, Stage I mesothelioma patients have an average survival of 21 months, hardly registering on the 5-year scale.

The 5-year survival rate is a standard that doctors use to estimate a patient’s prognosis after they are diagnosed. It simply states the percentage of patients who survived five years or more. Unfortunately, mesothelioma patients have such a poor prognosis due to lack of precision treatment options.

The comparison of breast, prostate and mesothelioma survival times seem to strongly correlate to the amount of funding the diseases receive. The National Cancer Institute is one of the primary sources of cancer research funding. In 2012, the NCI reported the figures below:

  • Breast Cancer—$602.7 million awarded/nearly 100% 5-year survival rate
  • Prostate Cancer—$265.1 million awarded/nearly 100% 5-year survival rate
  • Mesothelioma—$1.4 million awarded/a little more than 5% 5-year survival rate

While common cancers are receiving the attention they deserve, cancers like mesothelioma only received three grants in 2012 totaling a little more than $1.4 million for research. This is why advocacy is so important, and National Rare Disease Day lends support to that awareness.

In the spirit of National Rare Disease Day, there are several ways you can contribute to spreading awareness whether it’s donating to a nonprofit mesothelioma organization, attending awareness events or even spreading the word about mesothelioma today.

Let’s make sure mesothelioma isn’t forgotten among the thousands of rare diseases.

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    About the Writer, Andrew Devine

    Andrew Devine is a contributing writer for Mesothelioma Guide. He has developed an interest in educating patients and their families on everything from new treatments to what to expect after diagnosis.