CF Awareness Month Day 3 - Medications $$$

Did you know that having a life-threatening chronic illness can be expensive?  Like, blow-your-mind expensive?  It can, and for me, it is.

My current medication schedule each and every day, day-in and day-out is as follows:

Morning: (Approximately 1.5 hours if I don't get lazy between treatments)

Levalbuterol Treatment

Hypertonic Saline 3.5%

Pulmozyme

Inhaled Antibiotic (rotate between TOBI and colistin)

Vest treatment

2 puffs Dulera Inhaler

1 puff Flovent Inhaler

Sinus Rinse packet

Flonase

Multivitamin

Vitamin D

Vitamin E (gamma)

Vitamin K2

Krill Oil

Zyrtec

Probiotic

Emergen-C packet

Mid-day: (Approx. 15-20 minutes)

Levalbuterol Treatment

2 puffs Flovent inhaler

Evening: (Approx. 1-1.5 hours)

Levalbuterol Treatment

Hypertonic Saline 3.5%

Inhaled Antibiotic

Vest Treatment

2 puffs Dulera Inhaler

1 puff Flovent Inhaler

Sinus Rinse packet

Flonase

Multivitamin

Vitamin A

Vitamin D

Vitamin E (alpha)

Vitamin K Complete

Singulair

Zithromax (3 days a week)

Also:

1-4 Zenpep enzyme capsules every time I eat or drink something with fat

Occasional oral antibiotics or prednisone, as needed
Monthly Xolair injections for allergy-induced asthma

That's a lot of pills, inhaled medications, and equipment needed to keep me alive and functioning each day!  If you take away even one of these items, I start to feel the difference - sometimes it is an immediate effect (e.g., the levalbuterol or the enzymes), and sometimes it's a more gradual decline (e.g., the vitamins or sinus rinses), but each and every one of those items is essential for keeping me healthy and feeling the best I can.

And medicines cost money.  Some of them cost A LOT of money.  I don't know the exact number, but I know all those basic medicines cost a couple thousand dollars a month.  Not to mention the price of routine doctor visits, tests, hospital admissions, and occasional IV antibiotics throughout the year.  Thankfully, most of the costs are kept at a reasonable level for me due to insurance coverage.  However, this tether to my medications and treatments has resulted in me being a person whose entire life has been largely dictated by the availability of health insurance.  

Ahem...and now:  Health Insurance - A History

When I was a child, the burden was on my parents to make sure at least one of them held a job with good health insurance coverage so that I never had to go without medicines I needed.  When I became an adult, the burden shifted to me.  When I graduated college at the age of 22, I didn't have a job lined up and our U.S. healthcare system was a mess.  The minute I was no longer enrolled in school, I would be dropped from my dad's insurance coverage.  And because I had a pre-existing condition, I didn't even qualify for an individual plan; like, even if I was willing to pay some outrageous amount for monthly premiums, it wasn't an option.  I had no idea what I wanted to do with my life at that time (few 22 year olds do).  The only thing I really wanted to do was move to another country to teach English, but that was a no-go because it wouldn't provide health insurance coverage, and, as you can see, I have a slew of medicines needed to keep me alive each month.  I didn't have any job leads, and didn't want to go thousands of dollars into debt on a grad school program I wasn't really interested in; therefore, the option I was left with was to move back in with my parents, work part-time at a retail store, and use that money to attend classes at the local community college while I figured out my life.  I'd already earned my bachelor's degree and didn't need anymore classes, but I had to stay enrolled and earn good enough grades that it wouldn't negatively affect my overall GPA if/when I ever decided to pursue law school - all in the name of keeping access to my medicines.  It was a frustrating year and a half.

Thankfully, right as I was getting settled into my first full-time job as a paralegal at a small law firm in late 2009, the Obama administration changed the law so that children could stay on their parent's health insurance until their 26th birthday no matter what.  This provided a HUGE relief for the next two and a half years.  When my 26th birthday finally rolled around, I was then eligible for COBRA coverage under the same good health plan for 36 months.  This was good because by that time, I was knee-deep in law school and couldn't work full-time on my own anymore.  The COBRA coverage was a big chunk of change each month, but it was nothing compared to what the out-of-pocket cost of all my medications and other healthcare expenses would be WITHOUT insurance (the pre-existing condition issue still applied at this point), so that's the route I went.  During that time, I got married, but my husband's work didn't offer stellar insurance, so we stuck with the COBRA coverage.

My COBRA coverage would have expired in 2015 - right when I was finishing law school and taking the bar and not yet employed.  This also happened to be the second year the healthcare marketplace was up and operational, so thankfully most of the initial bugs had been worked out; the more I looked into the possibility, the more I realized I was basically exactly the kind of person the marketplace was made for - so I jumped on and had what felt like an out-of-body-health-insurance-purchasing-experience.  I literally answered two questions, and a very long list of healthcare plan options popped up - and I could choose ANY of them.  My pre-existing condition wasn't a factor in any way, shape, or form.  I crunched some numbers, picked a plan, pressed "submit", and voila.  Affordable health insurance coverage.  It was amazing.

Toward the end of 2015, I started working with a local nonprofit who provided great insurance for me and my husband, so that was awesome.   When I knew I'd be leaving that job earlier this year, I got back on the marketplace, hoping for the same experience and options I'd had in 2015.  Alas, a lot had changed in two years, and none of the plans offered on the marketplace were viable options because literally NONE of the CF providers in my state were in-network with any of the offered plans. 😔 Additionally, I couldn't find any health insurance company that offered individual plans any different than what was offered on the marketplace.  And so, it was back to COBRA coverage.  This time around, it is even more expensive than before - ridiculously so, in fact, but I'm grateful it's still an option.

Given the current regression of our healthcare system (which basically puts myself and others like me in the same helpless position we were in ten years ago), health insurance coverage has once again become an anxiety to add to my list of health concerns.  I'm not trying to get political, and I certainly don't personally know how to fix the mess that is our healthcare system, but I CAN tell you that allowing insurance companies to bring the term "pre-existing condition" back into their vocabulary is a mistake that marginalizes and punishes those in our society who need healthcare the most.  Right now I'm not sure what our next step will be once the COBRA coverage ends next year, but the Lord has provided an option every step of the way up to this point, and I've no doubt something will work out all in good time yet again. 😊

That was kind of a long rant.  But, bottom-line, medical care with CF is expensive, and healthcare insurance in essential.  People without adequate insurance coverage often have to pick and choose which medicines they can afford, and go without others that they desperately need.  Please keep us and others like us in mind next time you have a healthcare reform debate!

In case you haven't seen it yet, check out this Jimmy Kimmel video where he speaks about his recent experience with a sick child and the healthcare system.  I love what he says at the end about all Americans, no matter their politics, surely being able to agree that no parent should ever have to make the decision about whether they can afford to keep their child alive.  Give it a watch!