Madeline Miller
CONTRIBUTOR
Trumpcare is going to kill me. If I lose insurance I will not only become unable to afford my medications, I will also become immobile.
Aug. 14, 2014, I was diagnosed with Juvenile Idiopathic Arthritis (JIA) and in August 2016 that diagnoses changed too Systemic Onset Juvenile Idiopathic Arthritis (SJIA), a condition impacting only 10 percent of people living with JIA.
SJIA is an autoinflammatory disease that causes my immune system to attack my joints and my organs. I need a shoulder replacement and I’m going to need both joints in my jaw to be replaced.
This disease has upended my life. I am living with chronic pain and if I get sick I go down hard and end up either in the hospital or the ER.
How will Trump care kill me? Before Obamacare, kids like me with preexisting conditions were forced off their parent’s insurance at age 18. When the Affordable Care Act was introduced the age was raised to 26. A lot more people can afford things at 26 compared to 18.
My medications are incredibly expensive. With infusions that cost $22,000 every two weeks and monthly shots that can cost up to $10,000, combined with doctor visits and therapy, my treatment costs about $450,000 last year.
Healthcare is a human right; it should not be considered a privilege to be able to live your best life. A lot of people think be-cause an individual is disabled, they are less than a person. It’s important to remember that we have thoughts and we have feelings and we have a lot to contribute to the world.
If I lose coverage, my family would have to pay for my medications out of pocket, I would have to apply for disability which could take years. I am in the pro-cess of getting my life back on track and the treatments I’m undergoing are needed.
Sometimes people forget about the disabled community, we’re still here and we sometimes have our voices taken away. Hopefully someone in the Trump administration will reach down and find a shred of empathy.
