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

My doctor said we are finally ready to pursue my final appeal of insurance coverage for an insulin pump and continuous glucose monitor. It took a while to find and compile research studies since simply there are so few (we even had to wait for one to complete!). CF related diabetes is very rare, considering the size of the general population and it is also a fairly newly discovered complication of CF only since us cystics are living so much longer now days. I have figured there are only approximately 4,000 people in the US with CF related Diabetes. Finding info on it, none the less, hard data and research studies is very complicated.

Regardless of this, my insurance companay doesn’t care that I need to take up to 8-9 insulin shots a day, if I were to follow my prescribed nutritional needs. That is on a rough day. At a minimum I take 5 shots a day. Most diabetics with Type 1 diabetes take about 3-4 shots a day, minimum. My nutritional needs are much different than someone with Type 1, which makes things even harder to balance. My insurance company is not allowing coverage for an insulin pump because I do not have Type 1 diabetes…. now does this sound fair to you?!

I sent in my paperwork the other day, and my doc is sending in her stuff soon. Please wish good thoughts and send positive vibes for me and my future pump. Hopefully this time the reviewers will actually listen to my doctor and to common sense!

Just like Preston, in the article, my insurance feels that one dose of Pulmozyme a day is enough, where as my doctor feels that my lungs are in need of two doses. And so, with out much of a financial choice, I only take one dose a day. With a lung function of 53%, I know my insurance is not the best judge of my necessary healthcare.

Recently I have received letters from my insurance company denying coverage for the three weeks of IV antibiotics I needed in December to help with my reoccurring lung infection, (a CF exacerbation in medical terms). They denied coverage for the nurse who came to change the bandages for my PICC line and check on my well being once per week. Regardless that I had chosen to do homecare, which is not as effective, rather than a hospital stay because of previous fights with other insurance companies.

I am currently fighting their decisions, which in turn adds stress, which in turn lessens the time until my next exacerbation. As the cycle continues.

Insurance denied coverage for an upgrade to my respiratory ThAIRapy Vest, in which I am in dire need of, having to find other ways to loosen the sticky plugs of mucus in my lungs. I gave up on that fight.

As well, I am praying they reverse their decision against coverage of an insulin pump and continuous glucose monitor, which I am still waiting to hear a response.

Without these treatments, medications, therapies,…. I cannot even start to think of the repercussions without crying. I am sure to die a very hard, painful and early death. This is the life of a person with Cystic Fibrosis.

I was denied the Continuous Glucose Monitor because it is too new on the market (FDA approved it last year) and apparently there have not been enough studies to show that it is affective. I don’t see how this device would not be affective. I want it because I live alone and am deathly afraid of having a seriously low blood sugar level and passing out. So I err on the high side, which is not good for my body. With a monitor, I could set it to alert me if I started to go to low and I could treat it before I got to a dangerously low level. I wish they could understand that.

Do they not realize I have diabetes? My A1c at last check was 9.0, three months before that it was 9.3. A normal A1c is between 4% – 6%. I am already experiencing complications with my kidneys due to this and it affects my CF too. Do they not see the benefit of giving me a piece of equipment that will help lower these levels and prevent further damage and further complications???

Why does insurance seem to lack the skill of logic?