One of my old coworkers sent me a link to an NPR report he heard on the news today.  This report hit hard at home for me.  It is about a couple of families with children who have cystic fibrosis who are stuck in the middle, financially, much like myself.  The costs of caring for cystic fibrosis are astronomical, mostly due to the disease being rare (can’t mass produce to cut costs), also due to the cutting edge technology that has become common practice in treating this disease.  This technology is what is keeping most of us with CF alive, but most of us are struggling to afford it.

If you work your butt off to get a good job (usually sacrificing some of your health in the process) you can’t qualify for government, or non-profit aid, because you make too much money. If you get that good job, with health insurance benefits, you are stuck with co-pays and deductibles that eat up the majority of your paycheck.  Many of the high-tech medications that are typical for a person with CF are in the highest bracket of what insurance will cover (IF they will even cover them at all!).  Many cystics are on at least a dozen or more different types of medication on a regular basis.  So even if we were blessed with a co-pay of $60/med/month, the total just for meds in one month could be in excess of $720. Not to mention, there are frequent doctors bills, in-patient hospital stays… and of course all the meds sold over the counter that insurance will not pay for.  For me, my new insurance cost out of pocket leaves me with 15% copays for dr visits, meds, and most everything.  Now I know that off the top of my head that two of my daily medications cost at least $3k/ month… 15% of that?… I don’t want to know.  Fortunately, I have a back up insurance (picks up most everything else except for DME) that most others are not so lucky to have.

I got word from the Cystic Fibrosis Foundation earlier this week that one in four patients skip out on treatments due to problems with insurance.  Not necessarily is it because of money, but also because we seem to have to fight for common practice treatments, which many of us do not have the time, money or energy to fight for. (It took me a long and hard NINE months to get an insulin pump for my insulin dependent diabetes caused by cystic fibrosis. RIDICULOUS!!!).

Unfortunately with how the majority of health insurance systems are structured things are not going to change.  This NPR article did a very good job sheding light on an issue that many people with CF have.  Check it out when you have a chance.

Underinsured Struggle To Afford Health Care: NPR