In the mesothelioma community, there are many people behind the scenes. Many people are trying to make a difference for the patients, families, caregivers and friends that have been affected by mesothelioma. Often the importance of their work is not recognized.
Recently when talking to a patient advocate we were reminded about how difficult it is to navigate the health care system on a regular basis and how difficult it can be when you are dealing with mesothelioma. A question about insurance coverage came up for one of the patients. They could not afford one of their prescriptions. The prescription was necessary for their recovery. After multiple phone calls and some arm twisting she developed a plan and could get the medication that the patient needed.
A researcher that we regularly see always asks about the patients. He asks because we can help him put a face to the stories about the patients. He usually does not meet the patients, his passion is research, but the stories are inspirational to him to know. He can make the connection that the work he is doing is making a difference.
A radiologist does his job during the day and during the evenings works on a clinical trial for mesothelioma. The disease is a personal interest of his. He knows that today’s research that is being conducted is hope for tomorrow’s cure.
The intake coordinator at the hospital is often the point of first contact for patients and families. A patient this week told me a story of how he was diagnosed with a life-threatening cancer and told that without treatment he had 3-6 months to live. The first appointment he could get with his local oncologist was 3 weeks from the day he was told his devastating diagnosis. Three weeks to someone who was just told he has 3-6 months and was in considerable pain is a lifetime. He made a few calls, he could navigate the system, and was seen the next day by an oncologist and a pain MD. Once in the MD’s office he was admitted to the hospital for workup and pain control. He now has a plan.
There are countless stories of people behind the scenes working tirelessly to make the patient and families experience better.
For mesothelioma patients and families please reach out there is a community surrounding you and many more behind the scenes that want to help.
– Ellie
