Straight Talk about Mesothelioma, a blog series created by Michael T. Milano, M.D., Ph.D., a radiation oncology specialist, as a resource for mesothelioma patients and their loved ones.
According to the American Cancer Society (ACS), 1 in 5 U.S. cancer diagnoses is for a rare cancer. This is a tremendous proportion of cancers on which doctors have limited information, leaving patients and their families short of the support and treatment they need.
One of the hardest forms of cancer to diagnose is mesothelioma, a cancer caused exclusively by asbestos. Mesothelioma symptoms are easily mistaken for other cancers or illnesses and subsequently mistreated.
Advocacy organizations exist to help solve this problem. By funding and advocating for research, these organizations can better inform doctors on how to prevent, detect, treat, and perhaps even cure rare diseases. The following are key initiatives mesothelioma patients should be aware of.
ADAO is the largest organization dedicated to raising public awareness of asbestos-related diseases, which account for up to 15,000 deaths every year but remain poorly understood. The organization’s main goal is to prevent and treat these diseases through research, a global community of survivors, and advocacy for a global asbestos ban. Its annual conferences bring together medical and public health experts from all over the world.
Formerly known as MARF, the Mesothelioma Applied Research Foundation is a nonprofit committed to ending mesothelioma. The organization advocates for research and educates patients and their families through its extensive resource library. MARF has so far generated $9.8 Million in grant funding to improve patients’ treatment and survival, and $15.1 Million to fund severely lacking federal research.
NORD is a nonprofit organization focused on improving the lives of people with rare diseases. Its database contains abundant information on more than 1,200 conditions, including mesothelioma. NORD also provides programs and services such as the Patient Assistance Program, which helps patients obtain life-saving medications, and Rare Action Network, a community of patients interested in fundraising and networking.
The WHO, a member of the United Nations Development Group, works with governments and other international agencies to build a healthier world. One way the organization strives to combat disease is by raising awareness of their causes. Its International Programme on Chemical Safety investigates asbestos-related diseases and promotes public health actions to eliminate them.
- The National Cancer Institute (NCI), provided by the National Institutes of Health (of the U.S. Department of Health and Human Services). NCI provides up-to-date and easy-to-understand information on rare cancers (here is the mesothelioma page), databases of clinical trials, and a contact center for support.
- The United States Environmental Protection Agency (EPA), a federal government agency that works to protect human health and the environment. The EPA’s anti-asbestos initiatives achieved a partial ban several decades ago, but much work is still to be done to investigate and prohibit the toxic substance.
- The Centers for Disease Control and Prevention (CDC), whose National Institute for Occupational Safety and Health (NIOSH) department gathers critical data on mesothelioma and workplace exposure to asbestos.
The ultimate goal of most advocacy and research efforts is to work toward prevention and cure. However, mesothelioma is a complex and relatively recently discovered disease still in early stages of investigation. By participating in these organizations’ programs, every mesothelioma patient can make a difference or find the support they deserve.