While 80% of rare diseases are genetic in origin, the remaining 20% are related to the environment or infection. This week’s blog, written by Tonya Nelson and her colleagues at Mesothelioma and Asbestos Awareness Center, introduces us to one such rare disease and the progress that is being made in treating it.

Mesothelioma, a rare cancer that most often affects the lungs, is a disease that can be pretty easy to ignore. Its only known cause is exposure to asbestos, a toxin that was widely used in construction until all types were banned in the UK in 1999. Many people think with such a ban, the risk is gone and they shouldn’t have to worry about asbestos and the diseases it can cause. In 2014, there were nearly 3,000 new cases of mesothelioma in the UK of which 94% were preventable. But since the late 1970s, the instances of this disease have increased by an astounding 497%, despite the banning of asbestos. Even though asbestos is no actively longer being used, it still remains in many buildings, schools, and even various home goods like hair dryers. It’s a risk that shouldn’t go ignored.

Mesothelioma can be caused by any amount of asbestos exposure. When the asbestos is disturbed, we can inhale its fibers. They then latch onto our organs and our bodies are unable to break them down because of their durability. After a long latency period, which could be 10 to even 50 years, symptoms may first start to show. Mesothelioma is difficult to diagnose because of this long gap of time and the nonspecific symptoms that first arise. Patients normally notice shortness of breath, chest pain, fatigue, loss of appetite, and other symptoms that can be misdiagnosed as common illnesses like the flu. An official diagnosis often isn’t made until the cancer has already progressed to a later stage, making treatment much more difficult.

However, recent research and advancements in the field have made patients hopeful in the face of a poor prognosis (most mesothelioma patients are given between 12 and 21 months to live). The best way to better this prognosis is early detection, which just might be possible with some new diagnostic techniques studied earlier this year. An interesting study from Belgium showed the possibility of detecting pleural mesothelioma-which develops in the linings of the lungs-through a simple breath test; researchers could tell the difference between asbestos workers with signs of the disease and those without at an 87% accuracy rate. In another study, researchers found a blood test using a protein known as HMGB1 as a means of detecting the presence of cancer. This protein is typically produced by cells damaged by asbestos, so if there is mesothelioma present they found a high quantity of these proteins. This is even more exciting news because those who have been exposed to asbestos could be monitored, so any sign of the disease could be discovered very early on.

Patients are also seeing new hope with better treatment options. The Cancer MoonShot 2024, a collaboration like no other between researchers, government, pharmaceutical companies and more, has helped exploded research for all kinds of cancer. Immunotherapy, a treatment that uses part of the immune system to fight cancer, is a huge component of this initiative and has already shown some great successes for mesothelioma patients. Though it’s still only in the clinical trial stage, patients in these trials so far have seen amazing results. For example, a trial for Keytruda-which has also proven success for several other cancers-saw a number of patients experience remission, shrinking of their tumors, or even just stabilizing the disease from further spreading. This means the world to mesothelioma patients who generally have had difficulties finding treatments that work and better their prognosis.

Though asbestos is banned in the UK, it’s still not banned everywhere, including the United States. But progress is being made and there seems to be a light at the end of the tunnel. We hope to someday see a world where asbestos is banned globally, and the process of abatement to properly remove the toxin and its dangers can begin. We hope to see a future without mesothelioma at all. Until then, the progress being made in treatment and steps being taken to rid the world of asbestos give hope that these dreams could become a reality.