Episode 20 part 2: Fighting insurance companies and becoming an advocate with a chronic illness diagnosis with Dr. Maura Lipp

Dr. Lipp was diagnosed with with multiple sclerosis in 2015. She developed leg numbness and trigeminal neuralgia, but like most physicians do, she ignored her symptoms and pushed through.  

She fought the insurance company for over 6 months trying to get the medication that she needed for treatment. She was out of work for 6 weeks unable to walk, and was concerned that with the next relapse she would be unable to walk permanently. She nearly gave up, but then had a patient come in with a similar experience but he had given up. The patient died after experiencing 3 years of agony. She fought even harder to get the insurance company to pay for her treatment. 

She found a way to fight the system with the help of the MS Society and the Chronic Disease Coalition. She learned how to write a letter to the insurance company to plead her case, and found that the person making the decision at the company was an ED physician without expertise in MS and that the company had not updated their protocols for treatment.

"If you had been fighting for your career for 30 years, and you were one relapse away from losing it all, wouldn't you be writing this letter, too? Wouldn't you be fighting for the best treatment possible?" She was able to get on effective medication and over 5 years had no relapse. 

She initially had difficulty speaking up about her illness, concerned about the perception that she was disabled. She soon found that telling her story was therapeutic and could lead to change. She became an advocate for MS, traveling to Washington and asking for access to medication that allows for effective treatment.  

She found that the Chronic Disease Coalition has examples of letters for patients writing to their insurance companies. They can be found here

She started an MS walk team and was surprised to see how many people in her small community has MS. She realized she could provide a platform for people to connect and come together. She created a support group and raised enough money to allow funding for a research project (approximately $110,000). She realized it doesn't take a lot to be an effective advocate. 

Find more information about the MS Society here.