One of the conference topics was rare diseases. The working definition of a rare disease in the United States is, “a disease that effects fewer than 200,000 Americans at any given time.” www.fda.org . Mesothelioma can be classified as a rare disease. Some of the other benchmarks of a rare disease also fit a mesothelioma diagnosis. A rare disease can be difficult to diagnose, often leading to a delay in treatment. There is no existing cure- again mesothelioma has no cure. Information is limited on the disease and treatment. There are approximately 7,000 rare diseases, only 5% have active treatments. Patients and their families that have rare diseases, are often searching for clinical trials and in the process become experts on their disease.
The challenges that exist regarding clinical trial information and getting this information to the public’s attention was also discussed. One of the initiatives that will soon be in place is from the Cancer Moon Shot Initiative which involves an improvement at the web site www.clinicaltrials.gov . Plans are being finalized to have the web site become more user friendly for both patient and doctors. There are bio-tech firms working on a way to integrate a clinical trial opportunity into the medical record, alerting both the patient and the MD that they might qualify for a clinical trial.
Support for both patients and families was also discussed. The patient and the family can use the knowledge that they have to spread awareness about the disease. They can use their resources, ask questions, and empower themselves to advance their loved one’s cause.
The mesothelioma community, although small, is a good example for others that suffer from rare diseases. They have raised awareness, are fighting for funding, and help support each other.
On Sunday September 25th on Good Morning America, consumer advocate Erin Brockovich, announced that she was taking mesothelioma on as a cause. She is intent on raising social awareness, to help to wipe out mesothelioma. Mesothelioma and other asbestos related diseases, are a threat to our health and safety. She challenged all of us to get active, empower ourselves, let our voices be heard.
The mesothelioma community is now being joined by a famous consumer advocate. We look forward to her energizing the community!
We recognize the importance of clinical trials to mesothelioma patients. This is why we have created, and updated every three months, the Mesothelioma Clinical Trial Digest, which contains user-friendly information for all clinical trials for pleural and peritoneal mesothelioma in the United States. Let us know if you would like this book or if you need help.
– Lisa
