Obamacare Offers Hope for People With Rare Diseases

Megan Barron, 22, has epidermolysis bullosa, a rare skin condition, but the Affordable Care Act could be a huge help for her. (Credit: Courtesy Megan Barron)

By Megan Barron

Like many other young people, I celebrated the passage of the Affordable Care Act because it meant I could stay on my parents' insurance until I was 26.

But as a 22-year-old with epidermolysis bullosa, a rare condition that causes painful blistering and scarring of my skin and internal organs, I also celebrated because it also loosened the grip that private insurance companies had over my peace of mind.

My bandage supplies alone cost more than $10,000 a month. That's not even counting for medical grade formula, tube feeding supplies and home health care.

Read Megan's other patient blog about being rare but not alone.

But now that I know my epidermolysis bullosa won't count against me as a pre-existing condition, I have more control over my life and a better shot of independence than I ever had before. Now, I know that part won't be implemented until 2014, but the exchange opening on Oct. 1 marks a start to a new era in health care, especially for those of us living with a rare disorder.

Perhaps the most significant change to come of all - the one that just might have me dancing in the streets - is the removal of lifetime caps. Growing up, I learned at an early age that my care needs were expensive. It took a long time to come to terms with just how expensive they really were.

"You're worth it anyway, don't worry," was my mom's go-to reply whenever I would start asking questions or admit worry over how we were paying for all my needs. It was a soothing answer, and seemed to quell my fears for the time-being.

But as I came to learn what a lifetime cap was, her attempted comforts weren't enough to calm my worries over how complex and needy my disease made everything.

Read more about children with Megan's rare disease.

Though my family of course thought I was worth it, the people fronting the bill didn't, as they felt my life was worth only a certain limit - a limit I was getting closer to reaching with every bandage change or prescription refill.

As I came of an age, with more and more responsibilities mine to oversee, the lifetime cap became a greater beast lingering in the shadows of my conscience.

Like many 20-somethings, I am focused on finding my own place, navigating leases, job offers, scheduling. But having a rare disorder and being 20-something is like juggling plates - any one could fall if you don't pay close enough attention. If that plate happens to be the lifetime insurance cap, well, the consequences can be dire.

But my legislature, my president and my Supreme Court changed all that with the Affordable Care Act. They passed and upheld law that declared on paper that my life was worth more than some accountant's creed at an insurance company. No one, no matter how rare their condition, no matter how complex their care, could be told they only get so much coverage over the course of their life.

It turns out my mom was right about not having to worry. Now that's a silver lining worth celebrating.

People fear what they don't know, and the misinformation swirling around the Affordable Care Act has warped the good resulting from this legislation. For the epidermolysis bullosa community, that means we won't need to hoard dressings and creams as if they were worth more than gold because access to such essential items will be more open than ever.

Health care is such a big part of our everyday lives no matter our health status, but for those of us with severe chronic needs, we've been waiting generations for this day to come, because we just can't afford to be excited over anything but a rift from the oppressive status quo.

Though we have complex care needs, our lives now have a chance to be focused on something other than just the daily management of that complex care.

While the government may have shut down temporarily, for those of us with complex health care needs, it seems that somewhere a window has been opened for us.

Megan Barron, 22, is the social media coordinator for the National Organization for Rare Disorders. Barron, a former White House intern, graduated from Duke University in May and plans to eventually attend graduate school to receive her master's degree in public administration.

A Day in the Life is a series of blogs written by people who are living with medical conditions.