A couple of years after finishing my treatments for malignant pleural mesothelioma, I felt like I needed to do something to learn more about my disease and asbestos, the substance that made me sick. I learned about a foundation called the Mesothelioma Applied Research Foundation from the daughter of another mesothelioma warrior. I kept in touch with her over the years, and one year she and her sister invited me to attend an annual symposium put on by the Meso Foundation. I happened to be going to Washington D.C. the same week the symposium was scheduled, so I took a day and met them there.
Mesothelioma Applied Research Foundation
To say it changed my life would be an understatement. For the very first time since my diagnosis, I felt like I belonged. I didn’t feel like the odd man out with that weird cancer no one had heard about. Here I was in a room full of people who not only knew, but lived with it. I was in awe. I learned so much at that symposium and met some amazing people. I felt a sense of purpose for the first time in four years. I vowed to keep attending the conference in future years as long as I was able.
At this conference, I met another woman who was a mesothelioma widow. I learned she founded an organization upon learning of her husband’s diagnosis. The Asbestos Disease Awareness Organization was founded by Linda Reinstein and Doug Larkin, whose father-in-law also suffered from mesothelioma. Their goal was to see asbestos banned and they spent much time on Capitol Hill trying to do just that.
I also found out that the ADAO hosted an annual conference and after meeting Linda and telling her my story, she asked me to speak at her conference the following spring.
I was thrilled. I now had not one, but two great resources to learn more about mesothelioma and its treatments, as well as more about asbestos and its sordid history. Every year since 2010, I have attended both conferences put on by the Meso Foundation and ADAO, and each year come away with new knowledge and a renewed passion to see change happen at the government level.
I’ve learned much over the years, and each year the conferences change just enough to keep it new, but stay the same enough to keep it comfortable. This year the conferences were just a week apart and both held in Washington D.C.
The Meso Foundation’s conference was near the end of March. The last couple of years they have partnered with the prestigious National Institute Of Health and had the conference there. The Meso Foundation’s symposium is so unique in that they have something for everyone: patients, caregivers, and bereaved. They also offer an entire scientific agenda for doctors, researchers, and anyone in the field that studies mesothelioma. At this conference, you actually get to know and talk to some of the best and brightest doctors and researchers in the field. I’ve never heard of another conference like that. The symposium was three days long, with two days dedicated to breakouts and information sessions and the third day dedicated to advocacy.
The best presentation in my opinion was the Mock Tumor Board. They had seven prestigious medical professionals, each with their own specialty discussion patient cases, just like a real tumor board that takes place behind closed doors. The moderator presented different “cases” to the board, and they discussed different approaches to treatment for each case.
The main take away is that surgery remains the single best approach at controlling this disease. The most exciting new treatments coming down the pipe are in immunotherapy for treating malignant mesothelioma. There are trials taking place with using immunotherapy prior to surgery to improve life expectancy. Other trials are testing Keytruda, Opdivo and other drugs combined for greater effect. It drove home the importance of clinical trials and how so many people benefit by those that take part in them.
As a patient, I did not attend the scientific discussions because they were meant for medical professionals. They shared things that are distant but coming up in trials eventually. I’m excited to know that so many researchers are finally taking an interest in mesothelioma and giving it the attention it deserves.
My favorite day by far is advocacy day. This is when we, as patients and representatives of the Meso Foundation, go to Capitol Hill to our representatives and senators to request funding. This year was no different, but we also had something special to ask for. The Meso Foundation is trying to get H.R. 1563, a patient registry bill, passed.
Currently, there is no formal federal registry to keep track of mesothelioma patients, their demographics, and other important information that could help identify gaps in current mesothelioma treatment. The profound impact of patient registries has been demonstrated in other diseases such as gastrointestinal stromal tumors, Gaucher’s disease, newborn screening for inborn errors of metabolism, interstitial pulmonary fibrosis, muscular dystrophy and many others. Following their implementation in these cases, there has been an acceleration in treatment development and acceleration toward cures.Over 100 constituents from many states descended on Capitol Hill to talk with our senators and representatives. I’m from Minnesota and am fortunate. Betty McCollum, my representative, is a co-sponsor on the patient registry bill. My senators, Amy Klobuchar and Al Franken, are both very pro health care and so I have every confidence that this bill will pass. It is a bipartisan bill, so both sides can support it.
Asking for funding is always on the agenda, and in past years we asked for mesothelioma to be included with the Department of Defense. Our veterans are disproportionately affected by mesothelioma, so a line of funding from The D.O.D. is vital to mesothelioma research. The NIH is on the cutting edge of many diseases and this administration’s budget cuts included the NIH. We also expressed our feelings about that and asked that the funding NOT get cut.
It is an emotional day, sharing all our stories, but it has a great impact. In past years, our advocacy day has been directly responsible for securing funding for research.
I left advocacy day with the hopes that our registry bill was well received and plans to follow up with all the staffers I had met with.
After three busy days, it was time to head home, do laundry, repack and then return to D.C. the next week for the Asbestos Disease Awareness Organization’s 13th Annual conference. This conference is a truly global affair attended by people all over the world.
Asbestos is not just a problem in the United States. It affects people all over the world and this conference is a window into other countries and how it is being dealt with elsewhere, such as in Australia, Brazil, Pakistan, and Canada. In the United States, it is the ADAO that is responsible for finally getting asbestos named on the EPA’s top ten toxic substances in recent Toxic Substances Control Act (TSCA) legislation.
The ADAO is essential in the anti-asbestos movement, and this conference never fails to move me. Patients share their stories. Caregivers, industry professionals and activists from all over are there to educate and inform us on what is happening. I am not going to lie, the current administration and recent appointment of Scott Pruitt to head the Environmental Protection Agency has us all a little worried.
The president has been known to extol the virtues of asbestos, like its so-called wonderful fireproofing virtues. Scott Pruitt has said that he remains unconvinced of the dangers of asbestos. Clearly, years of scientific proof and thousands upon thousands of deaths from asbestos mean nothing to this current administration. We have our work cut out for us.
This is why I got involved in advocacy. The call to action to help the mesothelioma community, to further research and awareness of a disease that people only know of because of late night TV commercials.
Going to conferences about your disease, no matter what it is, is empowering, enlightening and, most of all, reassuring. Meeting others who know intimately what you are going through and sharing your struggles and triumphs is something that is hard to put into words.
My advice to you, if you are feeling isolated or alone in your diagnosis, is to find a community. Find out about organizations that can help you and get involved in that community. Finding the Meso Foundation and ADAO has given me so much, especially the many friendships I’ve made through my advocacy work with them.
I can’t stress enough: find your community, get involved and get active. It makes this cancer journey much easier when you are surrounded by allies.