Protect Our Care :: From a Woman with Cystic Fibrosis

I was born with a life-shortening genetic disease called cystic fibrosis. When I was diagnosed in 1988, my parents were told I wouldn’t live to turn 20. This year, I’ll turn 29. I’m grateful for the medical miracles that have enabled me to have a long, full life, complete with marriage and parenthood. But those miracles have come at great cost. Each year, my prescriptions alone total at least $460,000. Adding in specialist visits and inpatient hospital stays, that number gets exponentially higher.

Without the medications, specialist visits, and treatments that price tag buys, I will die in short order. Without one medication, my cells will lose the degree of proper functioning they’ve gained. Without another, my body will no longer digest food — at all. Without others, my lungs will fill with even more sticky mucus. Without visits to my specialists and antibiotics (sometimes through an IV) to treat my frequent bouts of pneumonia, my body will succumb to the infections it is constantly fighting. Death by cystic fibrosis is essentially drowning on land. It is painful and difficult to watch. When a CF patient is end stage, the only hope to extend life is a double lung transplant, which costs over a million dollars.

Nine years ago — before the Affordable Care Act — when my husband and I got engaged, we were both students. While we had access to a student health insurance plan through our college, it didn’t have any prescription coverage and had a lifetime coverage limit that we knew I’d blow through in a matter of years. During our engagement, I spoke with expert after expert — social workers, disability lawyers, the finest minds in the US when it came to cystic fibrosis and health insurance access. Most of them said the same thing: Without access to employer-sponsored health insurance, we would not be able to make it. Most of them advised that rather than getting married civilly, we should have a religious ceremony and live together without being technically married in the eyes of the law — something a large number of adults with CF have to do, but something that was completely incompatible with our strong Mormon faith.

For months, we researched option after option — state-sponsored high-risk pools (which carried astronomical premiums and only covered 50% of care), Medicare (I didn’t qualify because I’d been disabled since I was a teen and had no work credits), Medicaid (I didn’t qualify for that at the time, either). Getting married was a blind leap of faith — we still didn’t have any prescription coverage, and I was sick enough to require two $80,000 hospital stays in the first six months of our marriage. Finally, six months after we were married, I was approved for Medicaid on what amounted to a technicality.

Even after my husband graduated and obtained employer-sponsored insurance, though, we worried. Before the passing of the ACA, many employer-sponsored plans carried lifetime coverage limits of one or two million dollars. CF patients frequently met this cap when their condition deteriorated enough to need a transplant; while I wasn’t anywhere near that stage, my frequent hospitalizations and pricey prescriptions were still enough to use up a one million dollar allotment within two or three years. Again, we panicked, worrying that my husband would have to change jobs frequently as I maxed out policy after policy. Thankfully, right after he began his first job, the ACA was passed, banning lifetime limits for all health insurance plans.

Two years ago, when my husband was unexpectedly laid off, we were able to purchase our own private insurance through a marketplace plan — something that would never have been possible for me before President Obama’s health insurance reform. We didn’t worry at all when the only job offer my husband got was a contracting job without benefits, because we knew we’d still have access to health insurance through the ACA.

For my family, and for people like us, when Congress tries to pass laws like the current American Health Care Act, or — just as bad — tout their plans to allow the ACA marketplaces to fail without doing anything to fix them, these aren’t just political ideas. These are human lives that risk death without consistent and affordable access to health insurance. If you want to protect patients like me, I encourage you to reach out to your members of Congress and encourage them to suggest legislation to strengthen and protect the ACA marketplaces, ensuring access to health insurance for those of us who live in fear of what would happen without it.