The Human Face of ACA Repeal: Michelle

When I look back on the last eight years and what we’ve accomplished as a nation under President Obama, I see a long list of foreign and domestic policies that help people; and among them the crowning achievement is the Affordable Care Act.

When I think about the ACA I don’t simply think about the 30 million more Americans that have insurance today than in 2008, I think of one person. I think of Michelle.

I met Michelle in 2009 when she was just 15 years-old. Michelle had been an active volunteer, with her mother Kass, in the election effort of President Obama in 2008 and I met her as she continued fighting with President Obama to reform our broken healthcare system. I had just finished helping to elect President Obama as I traveled from the Montana primary to Pennsylvania and Wisconsin in the general election.

In 2009, I was hired by Organizing for America to organize the thousands of Montanans who wanted healthcare reform. Michelle was one, but she didn’t just want health insurance, she needed it to survive. Michelle lived in Billings and was active in the group, Yes We Can Billings. A group dedicated to passing healthcare reform and fighting for an agenda that worked for all Americans.
Michelle may have been only 15 years-old, but she was more mature in than her years in many ways. She was smart as whip and understood the bigger picture of healthcare reform better than many adults. Michelle had grown up fast because she had a life-threatening disease known as biliary atresia. It is a rare liver disease that often has no long-term treatment other than receiving a liver transplant. Without insurance and the medicine and treatment it provided, she could die, her liver could fail at any time.

While Michelle did have a sage understanding of the world that few other 15 years-old have, she also had a youthful vigor, the happiness of someone who lived every moment. Her smile was incredible and her attitude amazing for someone with such a disease. I was inspired by her. She inspired me to push forward with those 16, 18, and 20 hour days in organizing to pass the ACA. I knew I was fighting for Michelle and she was fighting too and is still fighting. It was her mom, Kass, who reached out to me a few weeks ago and told me “we are both ready to work,” but they shouldn’t have to keep fighting for this basic right.

Michelle told me recently, “In the constitution its say we have the right to life, liberty and the pursuit of happiness. For those that may not have their lives in the balance with this still have a right to pursue their dreams and happiness in the long run. That always stuck with me. Not only do I have a right to life itself but to be able to be as happy and accomplished in that life as I can be which includes not having to give up my dreams because I can’t provide healthcare for myself.”

Michelle and her mom, Kass, worked tirelessly making calls to Senators and Congressional leaders, setting up events and organizing in their community. We passed the ACA through the Senate on Christmas Eve 2009 and through the House of Representatives in March of 2010. It was for Michelle and because of Michelle, that we passed it. Under the ACA Michelle can continue having access to coverage until the age of 26 on her parents’ insurance. After that, she is guaranteed affordable coverage, even with her pre-existing condition.

Biliary atresia doesn’t define who Michelle is, she is a young woman now, 22, and has plans for her life. Plans she wants to keep. She wants to help others as an addiction counselor and is currently pursuing her college degree. She is also still young and enjoys being young. In her own words, “Right now I want to just take advantage of being young, travel, go to concerts(music is really important to me, so seeing my favorite artists in concert is life-changing to me haha), and just continuing to be able to live my life with my disease affecting me as little as physically possible. I always try to make sure my disease doesn’t run me, I run it. The ACA allows me to live my life and manage my disease.”

If the ACA is repealed, Michelle will have to deal with the insurance industry as it was before 2009. She will just be another person with a pre-existing condition and will be taken off her parents’ insurance almost immediately. Michelle says, “I truly don’t know how I’ll get insurance then.” She was placed on the liver transplant list in 2012. If she loses coverage she would be forced to re-apply for the list every year. Michelle works and goes to college and would need to rely on financial assistance from her family to pay for insurance.
If the ACA is repealed, Michelle’s future is uncertain. So, it is with a heavy heart that I ask Senator Daines to think about Michelle when he thinks about voting to repeal the ACA.

Author: Nathan Kosted – Michelle asked Nathan to tell her story to Montana so Senator Daines would listen to his constituents.

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Nathan Kosted

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