Michelle’s Story

I found out last summer that I have an incredibly rare – 3 in a million – tumor in my abdomen called a desmoid tumor. Some people call it “benign” because it doesn’t metastasize, but it can be very locally aggressive.

I was told to be prepared for a “marathon, not a sprint” for treatment. My tumor can’t be surgically removed so I started taking a daily oral chemo drug last October. No one knows how long it will take or if the tumor will respond to chemo.

I have great insurance coverage through my husband’s employer, so I haven’t spent anything out of pocket for the drug since we have already met our deductible.

Without insurance, the oral chemo drug can cost more than $80,000 a year. Add that to the CT scans, consults with specialists, and most likely the other expensive medications such as IV chemo, the cost of treatment adds up quickly.

I’m incredibly worried about the possibility of meeting lifetime coverage caps if that part of the ACA is repealed. The amount of pressure on my husband to ensure he stays in his current job and that we never lose coverage for long enough for it to be declared a pre-existing condition is unbelievable.

Kevin’s Story

Kevin graduated from Emerson College in 2010 as a lighting designer. He was in the process of launching his career as a freelance lighting designer when he was impacted by a rare, congenital condition that resulted in legal blindness. The process of diagnosis and monitoring of the condition required numerous expensive medical visits and diagnostic tests. Kevin would not have had health insurance at that time had it not been for the Affordable Care Act. “During a stressful time in my life, thanks to the Affordable Care Act, I didn’t have to experience the added stress of paying thousands of dollars in medical bills.”

Lorelei’s Story

“My daughter, Lorelei, loved to play dress-up, Irish stepdance and watch Barney the purple dinosaur. Then at age fourteen, she began experiencing intermittent and mysterious bouts of pain. We knew it was serious when she called out to us in the middle of the night from her bed – “I can’t move” she said. The pain was immense and paralyzing.

Eventually, she was diagnosed with juvenile rheumatoid arthritis.

Now, 23 years old, Lorelei is in college and working toward fulfilling her dream to become a registered dietician. Her chronic condition is managed through infusion treatments every six weeks which costs an estimated $6,800 each treatment. The Affordable Care Act allows these treatments to be affordable. Lorelei can stay on her father’s insurance plan and is guaranteed health insurance at no greater cost. Without these protections, Lorelei could not afford treatments- treatments that allow her to complete basic daily tasks. She would be unable to live her dream and have a productive life. Instead, she’d be suffering from the pain and debilitation.

“Lorelei is probably one of the most courageous people I know. She never gives up. She has the biggest heart – she gets people.” Lorelei’s mom says with tears in her eyes.