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

I have realized that sometimes people aren’t ready to ask for help, even when they really need it… especially when you are ingrained with the personality that living with cystic fibrosis gives someone.  I don’t like to generalize, but it is almost too obvious sometimes that the personality traits of someone who has been fighting daily with CF since they were a toddler are very common to each other.  I have noticed that people with CF are usually very independent, stubborn, determined, intelligent, hard headed, with a lust for life, ringleader, troublemaker…. (I hear my co-RCPM-fans laughing at that last one, shut up guys! lol)  :p   All of these traits make it very hard to ask for help no matter how much you are in need.  Wanting not to seem weak, desperate or lazy, it is a super difficult thing to do.

This morning I listened to a rant from a radio DJ about people on welfare. He bitched about how the money he earned belonged to him and only to him and the government should not take any of it to help his fellow Americans.  He believed that there are charities out there to help those in need and the government should have no part in helping their needy citizens.  People should work for their money and those who work for their money deserve to keep all of it.  As you could guess I wanted to smack the living daylights out of that DJ.  I really wanted to call him up and ask him about his thoughts about people on disability who are being screwed out of a life because of a f-ed up governmental system and the lack of people giving to charities to help these people out. Why are some people so selfish??!  My friend who I mentioned above has been screwed out of a life, not because of something she did, not because she is lazy, but because she was born with a genetic chronic disease.  She worked a little when she was old enough and when she was healthy enough, but it was not much. I actually know a few girls in similar situations (the cystic girls are a little more public with their frustrations). Most of them are currently in their 20′s.  Barely bringing in enough from social security to pay medicaid co-pays, not to mention very high grocery bills and forget living on your own, no money for rent or a mortgage after paying those medical bills, like a child they are forced to live off of their families.  I thought about my friends in need when this DJ was so busy selfishly whining and the calls supporting him pored in.  I figured it would be best for my sanity if I just changed the station, which I did. It is people like this DJ that makes it so difficult to ask for help, and just deal with the suffering.

When I was in need I couldn’t help but notice that the majority of people who donated to my medical bills were people who probably really needed the few bucks for themselves. The people who are rollin in the dough were the ones who turned their backs on me and suggested I contact the Cystic Fibrosis Foundation, which yes I did and yes they were unable to help me (not something they are designed to do).  Why is it that the people who have been in need, or are in need, or see they may be in need in the future, are the ones digging in their coin purse? Why are some people so selfish?

I don’t know where I am going with this post.  On this election day, I really hope (but not too optimistic about) that the future president will be able to help out those who can not help themselves.  I hope for better health care, lower deductibles, better coverage. I hope that those on disability aren’t continued to be treated like the scum of the earth.  I hope that this president inspires Americans to love one another, and take care of each other as we should. We are all a part of this world, and in a way we are all family. No matter how you believe we came to live on this earth, I think if you really think about it you can agree. We are all comon humans, in that respect, we are all related, all family. We need to spend less time fighting and disagreeing, and spend more time helping each other out.  Maybe I feel this way because I have been in need.  Maybe I would feel different if I were born to rich parents or if my little hospital job would pay me a million bucks a year. Maybe I would have a different opinion if I were lucky enough to be born healthy.  But I wasn’t, and I am not. I am who I am. I see the need, first hand at times.  I see the lack of caring, the lack of love in our society.

I really hope that will change.  I hope for a promising future.

*hippie steps off her soap box*

I have no idea except to call a lawyer about this one. How on earth can they approve the device, agree it is medically necessary, but yet turn around and say ‘no, we don’t feel like paying for it’. How can they get away with this?!

Just had to rant. Any advice would be greatly appreciated. If you know of anyone who has been through something similar can you send them my way? I am at a complete loss what to do. Was that fight that stressed me out, made me sick, just for the amusement of some darned medical director at the insurance company?!

I’m going to go get my hair done… hopefully that will make me feel a little better. arg.

To get ya all non-diabetics up to speed, a blood glucose meter tests the amount of glucose floating around in your blood at the point of the test and quantifies it for comparison. This differs from the continuous blood glucose monitor system (CGMS) that I have been trying for many months to get my insurance to pay for (still to no avail). Simply, a meter is like a still frame photograph, a monitor is more like a movie.

The UltraLink has one super-awesome feature when used with a Minimed insulin pump (I guess the most current models only), it magically beams my test result right over to the pump, which allows me to skip the step of sitting there and scrolling to the right number allowing me to dive in to my awaiting food faster. It happens in the blink of an eye. Very slick.

My biggest issue with the UltraLink is the amount of blood it takes to test. OneTouch UL requires 1microL of blood (a fairly large drop) and the FreeStyle uses 0.3microL. It is very difficult to get a whole 1microL in one splunk of my lancet. It’s hard to judge if I got enough blood before the little vampire-like test strip starts sucking my blood into the meter. I can add more blood to the FreeStyle if I didn’t get enough, but I can not to the OneTouch… Kind of like the name, I have One chance or I waste a strip and have to do it all over again. Just now I attempted to test three times before I was successful. Just ridiculous!

While chatting with other diabetics it seems quite a few have issues getting FreeStyle test strips (the disposable strips that suck the blood into the meter), because OneTouch seems to be preferred by insurance companies due to cost. Now… In my past several years (probably 5 years) of using the FreeStyle meter I bet I can count the number of wasted test strips on one hand. Today so far, I have already wasted four. I am already on my second container of four, for my entire month’s allotment, and I am only three days in to my monthly order. I really doubt that FreeStyle strips cost ten times the amount of OneTouch strips (the rate I am going through them). Now how is that for cost savings?!

The Flash… I could go on and on. Aside from my major compliant above, the Flash has a backlight, so I can see my results in dim light (restaurants, dusk outside, at 3am). Also what made me fall even more in love was what I am calling a ‘stick light’. I accidentially discovered this fancy little feature not long ago and it quickly became a much desired feature in a meter for me. What it does is send a little beam of light down the test strip (just above it to be precise) so I can see where my speck of blood is and the location on the strip that I need to aim for. This was unbelievably handy when I didn’t want to leave the theater in the middle of Iron Man just to do a post-meal test.

The UltraLink is a very basic meter. It tests and sends my results to the insulin pump. That’s it. No bells, no whistles, no nuttin. No backlight, no stick light, no ability to add extra blood. And it is huuuuuuuuuge. Shoot, I used to carry entire purses as large (tiny?) as the meter case!

I definitely have more freedom with the FreeStyle. I think I will switch back as soon as I finish with my few boxes of test strips…. which since I waste so many, will be very soon!

Stuck mucus is the perfect breeding ground for bacteria. When bacteria takes over it causes an infection, similar to pneumonia, we call it a CF exacerbation (exacerbation means “to increase the severity, bitterness, or violence of (disease, ill feeling, etc.); aggravate”). For me it means 3 weeks of IV antibiotics to tame the evil bacteria. Continuously I have an infection since I can never clear out enough of the mucus that hangs out in my lungs despite taking hours a day doing breathing treatments which include inhaling medications, inhaling super-salty-saline, and doing physical therapy with my Vest, or having a family member or friend literally beat on my body. So my treatments vary to the degree my infection is on any given day. Infections cause permanent damage to the lungs, bronchiectasis, pneumothorax (collapsed lung), and some other really horrible things.

Any cold-virus I get, even allergies or any other irritant like cigarette smoke can cause enough excess mucus for an infection to kick into high gear. Less than a month ago I completed a “tune-up” which is what we cystics call it when we have to put most of our “regular” lives on hold and focus on maintaining our bodies. A tune-up consists of two to three weeks of IV antibiotics (sometimes in the hospital, sometimes at home), an oral antibiotic may be thrown in for an extra measure (all causing some wonderful side affects!), three to four physical respiratory treatments a day that last about an hour each, upping the number and doses of inhaled medications, among other stuff… all of this to help clean out the crud.

Over the past couple of years I have realized that my current method of airway clearance is not working for me. Having been fairly compliant with my care recently, I still had a steep decline in lung function caused by an infection taking over. I desperately need to find something that will help me get this thick sticky infected crud out of my little lungs. It has been less than a month since my last tune-up and I am already starting to feel overwhelmed with lung crud again. My “real” life is no where ready for another tune-up, I owe my work my first born (which will be difficult since I’m not having children) because of all of the “vacation” time they are letting me borrow, bills to pay, house to clean… I am not ready for another interruption.

For maybe 14-15 years I have been using “The ThAIRapy Vest” by Advanced Respiratory (company purchased by Hill/Rom in 2003). My machine is old, but still functions. The actual vest that I wear blows up with air and pulsates/vibrates my lungs by varying the air pressure within the vest, squeezing my chest. This Vest caused a financial pain in the patoot because when I first received the machine, it was supposed to be for a free 30 day trial. Unfortunately the company immediately charged my insurance, maxing out my lifetime maximum of durable medical equipment coverage. So even though I didn’t like the machine and it didn’t really help me, I was stuck with it. Without any insurance coverage left, I couldn’t get a different type of device.

Now that I am all grown up, I have my own horrible insurance coverage (that was my dad’s insurance that was maxed out, which is now my secondary since I am legally handicapped, but it still doesn’t cover much and has NO DME coverage left). I have a new lifetime max of $10k for durable medical equipment (DME) with my current policy. Now, my insulin pump and CGMS (IF, (big IF), the insurance agrees to pay their portion) will be going against the DME coverage. Leaving me not much coverage left to buy a new airway clearance device, which I need since the Vest is proving not to work for me and I am not getting any healthier. These devices cost between $10,000 and $16,000.

Recently I have tried out two different pieces of equipment, one costs $12k and the other I am still trying to find a price, but it is upwards of $10k. I really like both decives, and both have been effective forms of treatment for me, but there is no way I could ever afford both even with insurance. I am going to write up a review of my opinions of each piece for others, as I have promised over on the CF message board, in short time. I am trying to decide if another fight with my insurance company will be worth it. The stress that fighting causes me is something that really affects my health anyway, so I am trying to balance in my head if I can handle it.

I asked my case manager at the insurance company about getting a new Smart Vest and she said “we almost never approve those”. I know I will be in for another hard battle if I decide to go for it.

Oh yea, I forgot to mention I tried to get an upgrade to my current vest system, and insurance denied it. I think the newer machine would work better for me, but I haven’t tried it yet. That would have only cost $6,000.

I wanted to get you up to speed with my newest struggle before I posted my reviews of the airway clearing equipment. I will be posting my reviews of a Intrapulmonary Percussive Ventilator (IPV), The Frequencer and The Smart Vest very soon for your reading pleasure! The Frequencer is quite an interesting little device! Can’t wait to tell you about it!

Oh, while creating links in this post I came across the article on CF on Wikipedia. I think it is very honest and true to what CF is. Take a peek at it if you haven’t already. Cystic Fibrosis on Wikipedia. For some of you it may read like the worst case scenario of side affects you may read on the side of a medicine bottle. But in all honesty and actuality, every person with CF most likely will deal with all that is listed on the page at some point in their lives.

This letter is going to an “independent” medical reviewer (probably yet another M.D. with a specialty in endocrinology, not a CFRD specialist as I ask for) and will also be read by a medical director at my insurance company who will make the final decision of whether or not they will assist me financially with the purchase of an insulin pump and continuous glucose monitor.

I put on my white doctor lab coat when I wrote this, so I am sorry if there is confusion. I tease that I think most CFers deserve a honorary medical degree by the age of 30 with all the medical stuff we go through!

Here’s the letter… (or click the link below)

To Whom It May Concern:

Due to the rarity of my health issues, my appeal should be reviewed by a specialist in Cystic Fibrosis Related Diabetes.

As my Endocrinologist has described, I have Cystic Fibrosis Related Diabetes (CFRD). This is a rare type of diabetes affecting a small, but growing population of Cystic Fibrosis patients. CFRD is unique and needs to be treated as such. It is also very challenging as it requires a treatment that is tailored to my specific needs. My nutritional intake and activity levels vary greatly on a day-to-day basis due to the effects of Cystic Fibrosis, therefore treatment of CFRD must be flexible. When my health is considered in its entirety, it is obvious the addition of an insulin pump and CGMS would be the best, most-cost effective option. Better treatment of CFRD will result in better health, less complications, both diabetic and with Cystic Fibrosis, resulting in fewer hospitalizations, less IV antibiotic treatments and such, and in turn save Great-West Healthcare money in the long run. These effects need to be considered in the decision of financial coverage of the devices. Please understand that growing up with Cystic Fibrosis has given me a medical education that most patients do not receive.

My nutritional needs require a high calorie diet due to my inability to digest food properly. CF causes thick, sticky secretions in the pancreas which block digestive enzymes. I must eat almost continuously to keep up with my body’s needs for nutrients. Despite this, I am underweight and have always struggled to maintain my persistently too-low weight. Over my lifetime I have found gaining weight is almost impossible. This affects my over all heath, as it is well known that the weight affects lung function in CF patients. Changing my eating habits is not an option.

Often, the complications of CF have an affect my appetite on a meal-to-meal basis. This makes it even more important for me to eat as much and as often as possible. When I am well, I usually eat three large meals a day and continuously snack in-between to meet my caloric intake goals. Because I eat so frequently it is sometimes hard for me to tell which direction my blood glucose levels are going since the insulin bolus’ overlap. Checking my levels with a standard point-in-time glucose meter does not show the trend-lines I need to know to treat myself properly.

When I sit down to eat a large meal, 2-4 times a day, I can never judge how much I am going to eat. I eat as much as physically possible, usually not finishing everything on my extra-large plate. I have attempted to take insulin after I eat, having counted the total amount of carbs I took in, but the delay does not work for my body. As well, I have attempted splitting my dose, taking half a dose before a meal and one more shot after to complete the dose for the accounted carbs, but this has proven to not work for my body. For all the reasons stated above, my use of an insulin pump, which would allow several to many smaller boluses while eating, and a continuous glucose monitoring system, to provide trend-lines, is the most logical choice of treatment.

Recently I was hospitalized for a Cystic Fibrosis exacerbation, which unfortunately is very common for CF patients. During my one-week stay, my blood glucose levels were inexplicably out of control. Even with the help of the nursing staff and doctors, we were unable to find the cause of my extremely variable levels. A continuous monitor would have greatly helped my ability to gain control, alerting me of times when I would start to go too high (reaching well over 400mg/dL), or when I would drop low after too much insulin was delivered to correct the high. After my hospitalization, I continued IV antibiotics at home, and added Prednisone to my regimen for one week. I attempted to keep the best control I could, but without the assistance of a CGMS and the flexibility of a pump, I was not able to maintain my goal BG levels.

During and since this hospitalization, I have been on many new medications for my CF. No longer am I able to feel the signs when I start to become hypoglycemic. My educated guess is that this is due to one of my new medications. I live alone and am very afraid I may have a severe hypoglycemic episode while by myself. Yet, I must aggressively manage my CFRD to avoid complications. A CGMS would help me be more comfortable with lower, healthier, blood sugars and would allow me to gain and maintain better control of my levels.

An added difficulty for patients with CFRD is sluggish insulin. Due to the thick secretions in the pancreas, insulin is not able to move into the system in a timely manner. This can cause lower BG levels than expected after a bolus; also another logical reason a CGMS is a necessary tool, to alert me of these lows. The ability to quickly disconnect from insulin when this event happens is another reason a pump would work better than my current treatment of using shots. There are other issues that sluggish insulin causes that affects BG control, but I am just learning about this myself.

The more tools I have in managing my BG levels, the better my health in general will be, and the less of a financial burden I will be on my health insurance. I have suffered from dehydration many times since I was diagnosed with CFRD due to my body trying to flush the excess sugar out of my body. Dehydration causes the already plentiful amounts of thick, sticky mucus, to become even more like cement in my lungs, causing a perfect breeding ground for bacteria. I have a copious amount of mucus plugs in my lungs, which is common for someone with CF, but I also believe that the amount of plugs I have is increased due to dehydration. It is well known that patients with CFRD have decreased lung function, as compared to the already decreased function of a “normal” Cystic. I would appreciate your help in assisting me to take better control of my diabetes, by giving me the tools necessary to help me, in every way, to take better control of my blood glucose levels, to prevent further destruction to my lungs and the rest of my body’s organs, which is in my interest as well as in Great-West Healthcare’s interest.

Sleep is ever so important for CF patients when both healthy and ill. This may be a less major point, but it adds to the overall reasons that a pump and continuous monitor could assist in improving and maintaining my control. When I am ill, my need for long term insulin is even more important. While I am sleeping I can not give myself a shot of Lantus, there for I must interrupt my much needed sleep to give myself a shot. If I had a pump, I would not need to do this, which would help my body recover faster from illness, possibly even preventing illness and preventing the worsening of my Cystic Fibrosis.

I am not expecting to replace my point-in-time meter with a CGMS, I understand that both are necessary and very valuable tools that can only help me gain better control and maintain that control. I would appreciate the ability to take the best care of myself to prevent unnecessary illness because of all that affects my body with two chronic diseases.

With all the complications of diabetes, as well as the complications from Cystic Fibrosis, and all of the unknown complications diabetes can cause on CF. I think it is in the best interest of my health, and the best financial interest of Great-West Healthcare to provide myself coverage of both an insulin pump and CGMS.

I appreciate your consideration of my unusual case. Please contact my doctor or myself with any questions you have.

Sincerely,

me!

Attached was the criteria Great West uses to decide who gets coverage and who does not.

Policy: Criteria #1
A. Continuous subcutaneous insulin infusion (CSII) with an external insulin pump, including OmniPod®, is considered medically necessary and is covered as durable medical equipment (DME) when all the following are met:
1. The patient has very low endogenous insulin levels as demonstrated by the fasting C-peptide requirements* as defined below OR is beta cell autoantibody positive (Levels only need to be documented one time in the medical record), unless there is an unequivocal history of diabetic ketoacidosis (DKA)

Very low endogenous insulin levels are a diagnosis of Type 1 diabetes, not Cystic Fibrosis Related Diabetes.

Beta cell autoantibody positive would lead to a diagnosis of Type 1 diabetes, not Cystic Fibrosis Related Diabetes.

DKA is not common in patients with Cystic Fibrosis Related Diabetes. (thank goodness for me!)

I do NOT HAVE TYPE 1 DIABETES!…. is there ever an exception to the rule?!!!

As if I didn’t have enough to deal with already, why won’t my insurance realize that not everyone fits in their little square box of “average”?!

To continue on…

Here is the policy of who receives coverage for a continuous glucose monitor:

“The combination insulin pump and continuous blood glucose monitoring system is covered when the cost of the combination device is not greater than the cost of the pump alone”

I am in disbelief… did I read that right?! Insurance will pay for a CGMS only if it is FREE?! WHY WOULD I NEED COVERAGE IF IT WAS FREE?!!!

The logic is not making any sense to me today… sigh.

“Great West Nightmare”

Hello all ….

Am brand new to the site..and am looking for some guidance. My son was diagnosed back in October 06, at the time we were on KY State health insurance, and a few months down the road were looking forward to getting on the pump. Just as we were getting everything in order my hubby was hired to a new company and a new insurance company…Great West. All the information from the State Insurance was forwarded onto Edge Park and Great West..(mind you this took place in July/Aug 07 and the State Insurance was prepared to get the pump.) At that point everything kinda went haywire…We were denied the pump from Great West because his c-peptide level was normal.

At this point after many calls to our primary care provider, who I have great faith in..(if not his office staff -who refuses to return my calls), am at a loss as to what to do now..Do we need to retest his c-peptides..??..

I know the insurance company is playing the “game” but I am just sick of it. The medtronic folks I had originally talked to have all but vanished after assuring me they would help out in any/all appeals…

Do I need to camp out at my doctors office until he gets on the phone and makes the next level of appeals? My son in the meantime is going thru puberty…so his monitor levels look like a roller coaster ride…from 40′s to 300′s etc..etc.. depending on the day/time and activity level.
He is athletic and wants to play baseball and football again..(he played last year just after he was diagnosed.) but all these spikes are wearing on me. Is it me or is this is just plain nuts.

I kid you not! I have GreatWest Healthcare, I am trying to get a Minimed pump through Edgepark Medical Supply, I have a normal c-peptide test, and I TOO am being DENIED coverage from GreatWest! Our stories are too coincidental. I have been in touch with this wonderful mother, and we are going to share our tips and tricks so maybe both myself and her son can get GreatWest to cover our much needed insulin pumps.

I spoke with the insurance co, they believe their independent reviewers are up to date with all the latest info in their field. I approximate 4,800 people in the US have CFRD. How is every single endocrine specialist supposed to know the ins and outs of such a rare disease? My insurance “assured” me that their independent reviewers are up to date with diabetes (no mention of CFRD). Why am I not convinced?! Ha!

I am able to request my next appeal to be done by a specialist in CFRD, but I will not be assured that my request will be granted.

Learned something new today thanks to Dr. J. I have a normal c-peptide level, which the insurance is using to deny my claim. If I had an abnormal c-peptide level, this would diagnose Type 1 (low level) or Type 2 (high level) diabetes. CFRD is neither, which is why my levels are “normal” and why I have CFRD and not Type 1 or Type 2.

I want to send out a special “thank you” to my CF clinic nurse. I can’t thank her enough for all the help and support she has given me over the years. I know I am getting the best care because she always goes over and beyond to make sure of it.

This is an interesting fact. Colorado is a state that allows health insurance discrimination. A healthy friend of mine, “healthy” with exception to a small shoulder pain he had last year (which was treated with a cortisone shot and has not reappeared), was denied an individual policy because of the shoulder issue. So I really doubt I could get a self-insured policy in this state. I may have to consider something else.

Just started shaking, dizzy, and slightly confused, feeling like I am in a tunnel…. checked sugars, 74… off to go get a snack! Yum yum chocolate covered pretzels here I come!

P.S. Thanks for your support Jesse!!

Here’s what the letter says:
“This appeal was reviewed by an independent external consultant, Board Certified in Internal Medicine with a Sub Specialty Certificate in Endocrinology Diabetes & Metabolism….
… Although the patient has met the criteria of being on on intensified insulin therapy program, and has a hemoglobin A1C of greater than 7%, there is no documentation to support low endogenous levels in the member. Her C-peptide level is within normal limits, which is not unexpected, since cystic fibrosis is associated with impaired glucose tolerance rather than primarily decreased insulin production.”

Now, I am quite confused. I thought that CFRD was caused because of decreased insulin production because the pancreas is damaged and not able to produce enough insulin to keep blood glucose at safe levels? Could their “expert” be wrong?!

(-sarcastic comment warning-) I am wondering if the independent reviewer believes that I am overweight (5’5″ 107lbs) and should control his assumption of “Type 2″ diabetes by dieting. OH PLEASE!!

Note: I do NOT have Type 1 OR Type 2 diabetes. I have CF Related Diabetes. It is a whole different bear all it’s own.

Here is the denial for the continuous glucose monitor:

“The continuous glucose monitor was denied again because it “is still considered experimental and investigational, with the therapeutic benefit yet to be proven in large-scale long-term studies. … continuous glucose monitoring system is considered experimental / investigational / unproven and is not in accordance with generally accepted standards of medical practice at he the present time, it would not be considered medically necessary.”

Does any one have any comments or suggestions about how to refute this claim??

I have found out that my insurance, GreatWest Healthcare, is notorious for denying coverage for insulin pumps. Unfortunately I can not switch my insurance policy, as it is the only one offered by my employer.