I’ve been involved in healthcare advocacy work since I was 14 years old, eventually pursuing a Masters in Public Health. Most of my spare time is spent working with patients and families with chronic illness, but you can also find me binging home design and cooking shows on Netflix, and enjoying Brazilian food.
I was born with a rare genetic disorder called Marfan syndrome. I spent most of my first two years in the hospital having surgeries, but it would be several years later before my parents learned what the cause of my difficulties was. I have a list of specialists and medications. Without health insurance I could not afford the tests and pharmaceuticals needed to keep my heart as healthy as possible, let alone the periodic necessary surgeries (10, to date) and hospitalizations.
My husband and I are blessed to have 4 children, who are between the ages of 2 and 10. Between all the kids we’re involved in musical theater, cub scouts, and playing dress up. One of our children is autistic. One inherited my genetic disorder. One has a brain injury from in utero. I can’t work because of the time I spend in therapists’ and doctors’ offices with my children. Since the start of this year alone one of my children has had 2 ER visits and a multi-day hospitalization.
In 2013 my mother was about to start a new job when she started having dizziness. Less than week a later we learned she had stage 4 cancer as she was whisked to emergency brain surgery. I was with her when she woke up and the first thing she did was ask for a social worker to come and tell her whether she had healthcare coverage.
I don’t want to live in a country where someone’s first thought upon waking up from surgery is whether they’re going to go bankrupt from their care. I cried the day the ACA was passed because it meant a safety net for my family: no lifetime caps on medical coverage, and the guarantee of being able to get health insurance even if something were to happen to my husband’s job.
Unfortunately, not all members of Congress agree with me. Right now, I’m worried about the nomination of Chad Readler to the Sixth Circuit Court of Appeals. As a Justice Department official, Readler led the anti-ACA effort on behalf of the administration, and filed a legal brief arguing that the Affordable Care Act’s protections for people with preexisting conditions were unconstitutional. He wants to dismantle the ACA and a vote to confirm him is a vote against my family and millions of families like mine. I can’t let this happen. That is why I participated in a press call with Senator Brown yesterday and shared my story.
Right now, there are 11 million Ohioans. 4.8 million of us live with pre-existing conditions that range from diabetes and asthma to genetic disorders and cancer. Without the ACA, that’s 4.8 million of us here alone that may have to decide between going bankrupt from care, and going without care. If we reinstate the lifetime cap, what happens to people like my son and I, with complex medical conditions? I have friends whose children would have hit that cap by their first birthdays. What happens to the young adults trying to go to college or start a career that lose their health coverage under their parents?
If we lose these protections, people will die. It is as simple and horrific as that.
Whether or not my family loses these protections literally keeps me awake at night. I want our elected officials to remember that we cannot predict when we will need to access the healthcare system and so access to healthcare is an issue that is going to affect us all. Congress needs to stop these attacks on people with pre-existing conditions and guarantee essential health benefits, lower the cost of care and prescription drugs, and strengthen Medicare and Medicaid.
Please join me in opposing Readler’s nomination by contacting your members of Congress and requesting them to do the same. Thank you.