Lisa Emrich: The Evolution of an Advocate
Lisa Emrich was diagnosed with multiple sclerosis (MS) in 2005 and RA in 2007. Having two chronic illnesses is a challenge, “it’s difficult to know which disease is causing the symptoms,” she says. Although her MS limits treatment options for RA, she has found a medication that works for both. Lisa is a musician, teacher and advocate. She lives in Falls Church, VA with her husband Rob and their three cats.
After her MS diagnosis, Lisa had problems with affording the medication which then cost $10,000. “My insurance didn’t cover everything and the assistance program paid only 50%. It was very expensive. I was a self-employed musician and didn’t make a lot of money.” Lisa shared her story and was interviewed for Michael Moore’s movie Sicko. Unfortunately, her story got cut in editing.
Lisa started writing about the “money side” of chronic illness in 2007. “I wrote about health policy and health insurance. I was really mad at the entire industry. This led to speaking at an ePatient conference. I spoke about how pharmaceutical advertising focuses on ‘sell, sell, sell.’ I encouraged them to support and offer more services, providing what patients really need besides medication.”
One thing led to another. “I started talking to online communities, learning what the different concerns were. I noticed that the MS bloggers didn’t know each other. In 2008, just after New Year’s, I started the Carnival of MS Bloggers. I wanted to connect people in the community. Now there are more than 700 on my blogroll.”
Lisa has used her knowledge of community needs to advocate to pharmaceutical companies about what people with chronic illness really need. This has brought her to speaking engagements in the US and internationally. She has twice traveled to Switzerland as the US representative for conferences focusing on online needs and working with a chronic illness. She has also spoken at Ad Week in New York City.
“I was really proud to be included in Regina Holiday’s Walking Gallery. The patient’s voice is not represented at medical conferences. She’ll paint your health journey on a jacket if you promise to wear it at a medical conference.” The idea of the Walking Gallery is to start conversations to include the voices of those living with illness. (Lisa is 4th from the right in the photo)
Lisa’s journey has changed her. “I used to be extraordinarily shy and didn’t tell anyone anything. People who know me now wouldn’t believe it.” Lisa is committed to continuing her work advocating for people with chronic illness. “Sometimes I get very intense.” Her husband Rob “helps me lighten up. He’s my safe landing place.” She looks forward to the future: “there are lots of things to do and see.”