Fixing the Health System

I don’t have all the answers and I have never claimed to. I do have an opinion like everyone else on the subject. Facebook and Twitter have been on fire (at least in my world) with stories about diabetics going without insulin because they can’t afford the nearly $1,000 a month for insulin or their insurance company is constantly changing who and how much they must pay. Why isn’t aspirin spiraling out of hand like many other life saving drugs? Because it is not needed to stay alive. It can be not taken and not lose your life. If it gets too expensive, you stop taking it so they keep the prices low enough you will still want it.

Insulin and other drugs are not that easy to replace. Whoops, that was an incorrect statement. You can’t replace them. There are many drugs for seizures, heart problems, and the list goes on that people need to keep living. I’ve called us the “captive audience” before and will continue to do so until I am cured. I can’t just get up and leave the show (my life with insulin) because I will die.

Here’s my fix/opinion on how it can be improved. First, get rid of lobbyists. A person who is paid by a company to pander their policies and products to politicians should not be allowed to do so. If drug companies were not allowed to spend million of dollars to woo senators or representatives to pass laws that favor them over the common people maybe they would not need to charge so much to cover “research”. Laws that prevent us from ordering these life saving drugs from other countries where they are many times cheaper were lobbied for by these companies.

Second, repeal that anti-mail order law. If I could get drugs from Canada or Mexico (the reason they sought the law) they would either need to drop their prices to stay competitive or go out of business. One of the major reason touted for said law was to maintain high standards for these drugs. Recent tests have shown that the meds on pharmacies shelves today don’t always reach those standards anyway, despite having to pay nearly 6 times the price.

Third, start a national universal health care system like a huge chunk of the rest of the world has. There are always pro and cons for these systems and when set up here it will need to be tweaked and modified to work as well as it can. There is no perfect fix and there never will be. One of the biggest complaints of the system is “I don’t want to pay for someone else’s drugs or care”. I agree whole heartedly. What ever tax they set up to fund this system, make it apply to everyone. Rich or poor, young or old, and everywhere in-between. If you are on disability you get that tax taken out of your monthly check. If you are on welfare, social security, or get checks for your kids it would apply there as well. I said across the board and I meant it.

I know a lot of people may agree with some but not all these ideas/opinions but here’s my challenge to them. Come up with a better one. Like I said at the start, I don’t know all the answers but if enough people get together and work on it they can put one together that is fair and most certainly works better than our current system. I can hear the “Whiner!” and “Just shut up!” comment coming even before I post this. The problem is if you are telling me to shut up or call me a whiner then you must think the system works ok now. Does it?

Different Strokes for Different Folks

I read a post from a fellow diabetic this morning and after possibly breaking her site with a lengthy comment, I though why not continue it here on my own blog.  A polite way of describing the people I want to talk about are back seat diabetics or armchair diabetics. These are people who either are not diabetic and think they know what is best for us/me or they are diabetic and think their solution is the absolute cure to this disease so everyone needs to follow their advice.

Molly, at huggingthecactus.com (hope I got that right Molly), was talking about a recent experience she had while out to eat and her sugar dropped. Been there, done that. I loved her approach. It mirrored mine so much, great minds think alike. She used common easily obtainable items to prevent a low.

I have been for years told by my, now former, endocrinologist that I should carry a glucotab bottle or get some of the paste to keep with me for any lows I get. I just laugh. I had tried that years ago and found it very not my style. One, they taste terrible. They are very strong sugar substances that use sour flavors to try and conceal the very sweet  taste. Yes, I used the term TRY. It does not work in my opinion. Second is the low sugar content of each pill/tablet. Each one when I bought them was about 3 grams of sugar and 3 grams of carbs. Duh, sugar is a carb. I would down the entire 10 tabs and still have to get candy from a machine to get back to normal. 30 grams plus to get back to normal.

I currently, like Molly did, use regular soda to boost my sugar level when it gets low. A Mountain Dew has 46 grams of carbs in a 12 oz can. Some days it only stalls my drops instead of reverse it and then at other times it will send me into low earth orbit, well at least my blood sugar.

My point here is there are no two identical people on this planet. Even identical twins are not doing the exact same things at the exact same times hence what may work for one would not work the other. There are about 8 billion people on this planet so even if they all were diabetic, thank God they are not, there would be 8 billion different treatments for lows. Every person is different so every person must find their own fix to each incident. Let’s be honest about it, the same fix does work every time even with the same person. Just go back and re-read the last paragraph.

Molly talked about working out earlier, before her incident, and that brings up another issue, exercise. Everyone reacts differently to it and does it in different amounts and intensities. Please do not tell me I’m correcting it wrong simply because I’m not following my “prescribed” treatment to the letter. I have had 40 plus years learning my body and how it responds to my environment. I can probably tell you what will drop my sugar level or raise it and how fast before I even touch a food or weight.

I tried an insulin pump (twice), one that was supposed to be fully automatic. That means it decided how much basal insulin it was going to give me with no input from me such as having to set a specific basal rate at a specific time. It would read my sugar level and make the changes on the fly. It works great for a lot of people but not for me. My diagnosis as a type 1 diabetic was called into question because of the settings we were using and the way I reacted to it. The results are yes, I am most definitely a type 1 diabetic. You know what the kicker was for getting a C-peptide test (a test of whether your body makes any or enough insulin of its own)? When I was going to start the pump I ran out of Toujeo insulin (basal) and the insurance company did not authorize a refill. I don’t blame them. They just paid for an $11,000 pump. I ended up going for 3 almost 4 weeks without my basal insulin. I can hear the gasps out there. Relax. You really could not tell I wasn’t on any. Sugar level were higher at times but not nearly as high as they should have been.

The pump suspended my insulin for nearly 4 hours (insulin half live was 5 hours) at times and I still had to eat to get it back up. Here’s a trick if you have enough will power, Skittles are like little sugar pills (they taste far better though). First, don’t swallow them as soon as you get them in your mouth. Chew on them until they just don’t seem as sweet. My opinion was it got the sugar into my system much faster. Second don’t eat the whole bag. A small bag from the vending machine has 56 grams of carbs in it. I just did about 3 to 4 of them at a time to slowly get it back up, unless it was crashing hard. They are very easy to scale to my need at the time. That whole bag is like a meal in a bag when referring to the carb count.

Like I started out saying, everyone is different and what work for one person may not work for another. I do listen to others for advice but please don’t expect me to blindly follow your example. I may use part of it or none of it. I listen learn and adapt it to my needs and wants. You should to. I will willingly tell you what I do, have done, or would do but you need to see what if anything actually works for you. I don’t think most people could get by eating 3,400 calories a day without gaining weight. I’ve eaten like this for at least 20 years and not gained (or sadly lost) any more than 5 or 10 pounds in that time.

While I was on the pump the doctor kept telling me I was eating to many carbs. I needed to cut back on them and eat more protein and fats. Hey I’d do it if I wasn’t already cramming cars to stop lows. That 150 gram “magic” carb count number is based off a 1200 or 1500 calorie diet. So at 3400 calories if you do the math, I should be up to about 310 or 320 depending on which base number you use. When I started the pump I was at about 420 carbs a day and had dropped it to about 280 to 290 a day by the end so I actually did cut them down. Using the original numbers, I was under the carb count persentage. She didn’t see it that way. It’s one the reasons I decided to leave her and go another route.

Here’s the basics of this speech. Don’t feel you have to follow the path of another find diabetic bliss. Make your own path, it is the only one YOU can follow. Listen to others who are experienced, be it more or less, with this disease. They may give you an answer or least a clue to help you find your path, just don’t feel obligated to dot the i’s and cross the t’s. Doctor or no doctor, you decide what does or does not work for you. They can look at your Dexcom or Medtronic sensor log but they are seeing only part of the story. You have lived it. Like I said listen but be realistic about how and if it will work. I argued with my former endo about said reading and won the argument, well at least I got her to agree to me trying my idea. A good doctor will listen to their patients as much as the patients should listen to the doctor. Tell them your fears and goals. Tell them why your sugar shot up because 2 hours earlier on that same graph your sugar was at 80 and falling fast. You over corrected. Look for patterns on the graphs. Again you know if you were working hard or chilling in front of the TV. It can affect that graph just as much as what you eat. Blaze your own path in this world, just be smart about it.

The Fears of Being Diabetic

Why the fears of being diabetic? Why not? I didn’t call them phobias, they are not debilitating. A good diabetic will acknowledge the risks and prepare for them. Risks in my opinion are simply controlled fears. Will I run out of insulin today or drop the bottle and break it? Past incidents have led me to be very careful of where I set it when it is out of the case, aka been there done that. There are so many of them I can’t possibly bring up and talk about them all. The whole point to this post is letting people know that there are many risks to being a diabetic and not everyone knows them or wants to talk about them.

By knowing the risks you can either avoid them or minimize the chances of them happening. My big fear is having a low. Its not as bad with the CGM (that leads to another fear all diabetics have) since it lets me know where I’m at with my blood sugar and most of all which direction it is going. I can avoid the lows by knowing they are coming before they get too bad. I carry Skittles in my pocket so when I know I’m going somewhere I will not have easy access to snacks. Cutting back on exercise is never an option for me. I was not raised that way and can’t get past wanting to give 100% at whatever I do, at home or at work.

My 40+ years of dealing with diabetic issues have led me with a few near phobias with the lows being at the top of that list. I have been told what I am like when my sugar gets low and that scares the hell out of me more than anything else. I become a very combative, aggressive person. People who know me can tell you how calm and passive I am normally but lower my blood sugar and I become a different person. When I was 12 I threw a nurse across our living room, I’ve knocked orange juice out my mom’s hand so many times I lost count, and I woke up with 8 EMT/firefighters holding me down on my bed to get an IV started. At work I have told them to never try to force me to eat or drink anything. Just call the EMTs and let them handle it. The fear is hurting someone I care about. My old doctor hated the fact I run my sugars so high to avoid it.

Another fear that I alluded to earlier is how I am going to pay for all the meds and supplies I need to stay alive. It is sad to say insulin is not the only med with this issue but it is the one I am most familiar with. The cost of the bottles of insulin have gone from $115 about 10 years ago to $295 currently. That is also with the insurance company discount. Buying it without insurance I’ve heard is more like $380 a bottle. The CGM is also a big cost. Each month with insurance I pay about $120 for the sensors. Without insurance they are about $450 each month. They are only meant to stay on for one week but to save money I will leave them on as long as I can, 3 weeks at times if the adhesive stays put. The transmitters are another thing. I pay about $250 for one transmitter that last only 3 months, $1,000 a year with insurance. Without insurance, I would ben  paying $1000 each for them, $4,000. What happens if I loose my insurance? It keeps me up during the day, I work nights so that is my sleep time.

Up comes another fear/risk, loosing my job. I hate to break it to those who feel the ADA protects them but I have been in situations where employers have been, lets just say creative, in forcing me to leave. I don’t think I’m a bad employee. I show up for work on time 99% of the time, I don’t call in sick very often, I do what I am asked to do whether it is a part of my “job” or not, I get along with coworkers well, and am willing to work overtime when needed. I’m not going to get into the politics of it but “right to work” states also allow an employers to let you go without a reason. They will not use the word diabetic in any letter or phone call since that involves the ADA. They can just give any excuse and let you go, if they respond in the first place. As far as getting hired, that is another nightmare all together. The easiest form letter to use is “we have gone with another more qualified applicant” one. Have they? I have wondered how many times they hear about previous situations of low issues and decide to not hire over it. I’ve read the fine print at the tale end of the applications. You give permission for the company to run background checks on you which includes credit, criminal, and employment. You give them access to your employee files from former employers.

An everyday fear/risk is not calculating insulin does correctly. Did I count the carbs right? Did I get the right ratio? Did I do the math right? I’m not perfect. I’ve screwed this up more than just once in 40 years. Don’t panic and make the correction. Eat more if you go low. Take a bolus if you go high. This one is really easy to manage. Its more annoying than anything else.

Fear is a constant companion for a diabetic. One you need to become friends with instead of being paralyzed by it. I could  die by walking out of my house and down the street today, but I’m still going to do it. I could screw up any of the diabetic things I’ll do today but I’m still going to do them. As I said it in past blogs, I’m 9 years past my expiration date so in my mind I’m not loosing anything if I died today. I can hear the gasps from here. It’s life. I’m going to die, everyone will die. Its just when will I bite the big one. I realize the issues of being a diabetic each day and I work with those obstacles. I control them and move on. Enough said.

Wow! Already?

I read a post a little while ago from another fellow type 1 diabetic on accepting her “broken” body. I have to agree with her, our bodies are broken. Our immune system attacked and killed the beta cells in our pancreas that made insulin. Yes I said made because they are gone and have been for decades. We make no insulin on our own like type 2 diabetic so to live we must inject it everyday several times a day. To me although they are both considered diabetes type 1 an type 2 are separate diseases, different causes and different treatments.

Reading the post brought back memories of my life years ago when I was resolved to live with the knowledge that I was going to die much sooner than most if not all my friends. I would have to make sacrifices each day just to stay alive. The last few years of high school and the years shortly after I had given myself an expected life span of 40 years. Why you ask? I had been hearing for the last 10 to 20 years that I was more likely to have a heart attack, stroke, loose a kidney or an eye, loose a foot or leg, or one of many other possible bad things that are more likely for diabetics.

Well I am happy to report that my supposed end date was wrong. I have turned 49 so I’ve gone past my expiration date by 9 years already. I’ve had issues such as bad infections that apparently, according to my family doctor, was not expected to survive it was so bad. I also have had retinopathy in one eye but it is controlled and no further problems have been found. Just had them checked last week.

Now to the nitty gritty of why I’m writing this post. As much as diabetes has impacted my life, it has molded me into who I am today, a driven, resourceful, proud person. Some who know me might question that last description.

Proud? Yes, very proud. I don’t ask for help unless I’ve already proved I can’t do it alone. I don’t rely on others others to do things for me as I am completely capable of doing them myself. Maybe at times more headstrong than smart as I tend to push things to the limit to find where it is.

When I first became a diabetic, age 8 (1977), I had tried to hide it from others around me. I was different now. I had to pee in a cup to check for sugar in my urine. I had to get shots twice a day to stay alive. I had to get blood drawn once or twice a week to make sure the dosages were right. I had to watch what I ate at meals and in between. That was the worst as I had to get up in the middle of class to get a snack out of my launch box with everyone in the class watching. How was I supposed to hide that?

Diabetes is invisible. I don’t have a missing arm or massive scar on my face to mark me as a diabetic. Its why we all are expected to carry something like a med-alert bracelet/necklace. Even EMTs can not tell unless they are told. Makes it easy to hide.

I no longer hide the fact that I am a diabetic.  I do not go around spouting out to everyone I pass about it but readily will anyone who asks or inform coworkers to make them aware. One of the reasons is the growth in diabetic awareness. Not to mention the fact back then there were estimated to be 6 million of us. There are now 22 million of us with only 10% of them are type 1 like me.

As much as it has changed my life and made it harder, diabetes has also made me who I am today. I am driven to manage more than defeat this problem. I watch what I eat and try to control my sugar level but also live like a normal person. I don’t avoid sugar. I also don’t hide from work. I’m not going to call myself a workaholic but it would be close. My job is a material handler at a factory. Yes I do drive a fork truck but most of what I do is by hand. I can honestly say that depending on the night I lift and move maybe 1 to 2 tons of steel. 2,000 to 4,000 pounds of steel. I use an air grinder to remove burs and slag off parts. Try it for at least 4 hours before you call it easy, you do flip the parts you are grinding and some of them weigh close to if not over 100 pounds. Its hard work and I love it. My problem at work it I do so many different jobs that I don’t know from one moment to the next what I will be doing. Friday I started out unlading a torch table then moved to grinding parts and then sat on a fork truck for 4 hours. Even then I couldn’t take it. I kept the radio with me but jumped off to finish grinding the parts I had started earlier. I also jumped back off at the end of the night to help load the plasma table to get it done faster. I’m such a pain in the buttocks.

I guess it has given me a chip on my shoulder. Because I have diabetes I feel the need to proof myself more than others. I need to prove I can work with the big dogs instead hide under the porch. I have never and will never use my diabetes as a crutch. I can do anything normal people can with some special conditions. Foremost among them is being able to eat when my sugar level drops too low.

I guess to wrap this up, I’m done hiding (have been for years). I don’t broadcast being a diabetic but I don’t hide in bathrooms to do my shots or check blood sugars anymore. You can’t stand the sight of blood or needles? I’m sorry, turn your head then. I’m not going to apologize for being a diabetic. I didn’t go looking for this and am sure as he11 (don’t want to sware here but………..) not going to feel less than human for having it. I guess my feeling anymore has gone to the point of if I have to live with this then you are just going to have to cope with the ways I have to use to deal with it. You don’t have to do anything other than leave me to deal with the shots, sugar tests, and food intake. Its all I ask of you

Back in the Old Days

I read a tweet about a girl who gave herself an insulin shot in a classroom setting and managed to disrupt someone’s world. I’m being sarcastic. My response would not have been so polite, at least if she had made a second comment.

It brought to mind how I do things differently in modern times compared to back in the day when Fred Flintstone and I rode around together, feels like that at times. Back then if we went out to eat, my mom or dad went to the bathroom with me and drew up and injected right there in one of the dirtiest rooms possible. Why? Stigmatism. In those days if you saw someone with a syringe in a bathroom it was, what drugs are you using? That was on my mind each and every time we did that. It made me self conscious that I was making someone else feel uncomfortable.

I spent years trying to not offend or irritate people I didn’t know or really care about. My dad was really bad about this. “Let’s go in here to stay out of the way.” Seemed more like a “lets stay hidden so they don’t know we have issues” kind of move.

Now, I don’t care if someone sees me shooting up. I even call it that. Shooting up is usually a term used by druggies getting high, not diabetics saving their own lives. I never go into a bathroom to inject anymore. If someone flushes a toilet you just got sprayed with fecal bacteria. Does not matter much that you used alcohol or other disinfectant because once it dries it no longer works. That bacteria could hang in the air for several minutes before landing on the counter or faucet. Sorry to ruin people’s meals but this is reality.

I’ve had people come up and ask if I was diabetic, while I was injecting. There are so many of us now it is not as odd to see someone injecting in  a restaurant or store as it once was. 22 million of us in the USA alone and about 10% of them are type 1, insulin dependent for those not versed in the language. I make no apologies as I have come to terms with the fact that I die without it and refuse to say sorry for that.

My first response to someone who says they are not comfortable with me injecting is to take into consideration their timing. If they say something while I’m drawing the insulin from the bottle I will politely excuse myself to another area to jab and go.  Some people are sacred of needles and I get that. If they have waited, watching me draw it up and then say something while I have the needle stuck in my skin, well, they just out of luck. I am going to continue. A person who waits until it is too late will most likely be the person who pitches the biggest tantrum as well.

That is when my inner ass comes out. He is not nice nor is he well behaved. He will tell you most likely what you do not want to hear. I try to leave him at home but there are people in this world who seem to just be hunting for him. If you wish to be rude do not expect that to be a one way conversation. The worst mistake you can make is to think that because I am an “inferior” diabetic that I can’t defend myself. lol Game on.

It Gets Old

40 years I have beena diabetic and 40 years I’ve heard almost every excuse as to why I am a diabetic (almost never the right one) or things I should or shouldn’t do. They are not all bad people, most are simply not educated about diabetes. That being a result of not be close to someone who has it. Very few understand that there is more than one type of diabetes. That also leads to misunderstanding the reasons given on TV and in articles about this disease.

First and foremeost, eating wrong and not exercising does not “give” or lead to type 1 diabetes. It can hasten or lead to type 2 diabetes. Type 1 diabetes is when your body’s own immune system turns on the beta cells (islets of Langerhans) which are what produce insulin in the body. By the way, humans are not the only animlas in the world who can get diabetes. After they are gone, you can’t make your own insulin and must daily give yourself injections to stop ketones from building up in your blood, which will kill you. To put this as plainly as possible, no insulin no live.

Growing up I did not eat the best but it was far from the worst diet in history and it was pretty much the same as everyone else in our house. Chips Ahoy cookies may be the real sticky point as I loved them and consumed them often. I exercised regularly riding my bike all over this town, climbing trees, and running all over the place. Lack of exercise was not my problem. I was only the second person on mom’s side to come down with it but I was the first type 1. Most doctors consider it a genetic disease as it is inherited and pasted down from parents to children. Everyone of my mom’s side of the family had it before they pasted away.

As far as people making comments about what they think of my treatment or lack thereof, I ultimately don’t care but do not get mad if I don’t bow to your will and do it. I have had 40 years of experimenting to find what does and does not work for me. If you are a fellow diabetic and give me advice, again, please do not feel slighted that I disagree and/or do not follow your advice. If it is something new I may try it but there is no guarante it will work for me. I am not you. Everyone is an individual and MUST be treated that way.

My last doctor and I had issues with that. To me it felt like she was trying to fix my problems, which she admitted were not  normal, with standard treatments. How would a standard treatment fix a non-standard problem? It never made sense to me and it never will. If the problem is not normal, you think outside box, don’t stop at the wall of normal.

I guess what my point for all this is, that I make my decisions. Right or wrong, good or bad, they are mine. You are not living with this disease, I am. I will live with my blood sugar being high and shortening my life cycle. I will live with taking shots or lving with a pump. I will decide what is too low for me to function and when I need to correct the deficiencies. 240? No I’l leave that one alone. 85? Oh hell yes, I’m fixing that. But that isn’t low you say in the back of your mind. For me it is. I can feel my mental senses start to slow down at that point. I can’t concentrate as hard or think as fast below 90. You would never know it while talking to me unless you know me very well. The sarcastic comments I normally make are just not there. Its like I’m becoming a different person. I can, most of the time, see or sense it coming so I can prevent it. Just let me do it on my own thank you. My life, my way.

The Cost of Being Diabetic

I have almost met my deductible for my health insurance this year already. I have better than most insurance as that deductible is only $500 instead of the $6,000 I’ve heard people tell me exists out there. It also caps my out of pocket at about $2,250. Now that being said it does not always work like that. Last year after a failed attempt at using an insulin pump, I had reached that out of pocket limit in June I think it was. However, I was still charged a full price to see another endocrinologist in October for a second opinion. I also never got a good answer on why that one bill was not paid.

Regardless of the insurance issue I wanted to talk about the cost of the insulin. Why? Because this issue has become a hot button for diabetics everywhere. Insulin has jumped from about $35 dollars when I was first given it 40 years ago to about $294 now. I can hear the responses now. “That is not too bad. Why are you whining about it? It is the exact same 40 year old insulin I was on in the beginning. It has not been changed or made better. It has not been modified as to what it can or will do for me. I actually had to fight to be placed back on it after the pump didn’t work out. It only lasts 12 hours so I can take more when I need and less when I do not. Most doctors push for the “new and improved” 24 hour insulins. I always asked why an insulin I take every 24 hours is advertised by the makers as lasting 36 to 42 hours in my system. Isn’t that insulin loading, building more insulin in the system than needed for no reason?

Back to the cost issues for this, I got my first insulin bottle for my long term (the 40 year old) insulin and was actually surprised at the lower than expected cost. It was $146 for the 10ml bottle. It will last me most likely a month give or take. I was expecting the $380 I had been hearing of from other diabetics on facebook and twitter, nice but strange.

Earlier this week I got my first bottle of short term insulin and then was hit with sticker shock. It was $294 for the same size bottle. The problem I have with this cost is not only the difference but that this higher costing insulin is the one that A.) I can not live without, and B.)I use so much more of it. I go through a bottle every 2 weeks.  I take it whenever I eat something or if my blood sugar is really high. I do not waste it on “kind” of high which will over time shorten my life span. Oh please, I am not worried about it as I was sure with all the doom and gloom talk back in the beginning I was not going to make past 40. I’m 48 now so I’m 8 years past my expiration date.

To put these cost into perspective, My monthly cost for the long term insulin is about $146 and for the short term insulin about $588. Her is another issue I have about this cost. I know other people are being charged $380 for these insulins but yet the insurance company can negotiate a discount to $146. You know they are still getting some profit off that lower price, no use being in business if you can’t make money, so that $234 difference is pure profit off a medicine that people will die without, talk about a captive audience. How about they start to charge you for every cubic meter of air you breathe? You can’t pay you don’t breathe. It is the same concept. Diabetics can not live without insulin but companies make insane profits from that need.

Years ago a law was passed to prevent US citizens from going to or continuing to use Canadian or Mexican pharmacies to fill the need for much less. The cost of insulin in England for example is from 5 to 7 times cheaper. Yes you saw that right, it is not percent cheaper but times. That means the bottle that cost $380 here in the USA is only about $56 in England. Articles I have read on this subject use the excuse that it is higher here because the companies have to meet much higher standards than foreign companies. Another recent article claims that tests on bottles of insulin have shown below acceptable levels of purity here in the USA. So where is that benefit of that higher cost?

I looked at the financial papers for 2 big drug companies and found that they make almost as much in the USA as in the rest of the world combined. Some critics of having a controlled, government run, drug program is that if you lower the price of these drugs then the companies will not be willing to spend money on better meds or maybe cures. Cures? Why create a cure for something that is making you tons of money treating it for a lifetime.

I can only talk from a diabetic’s perspective but other diseases are taken advantage of just as bad. Epileptics need seizure meds, transplant patients need antirejection meds,  and the one that garnered the biggest response recently was the epinephrine pens for people with life threatening allergies. Those CEOs got hauled into congress to explain why they jacked the cost so high so fast. No good answers were given that I have heard yet. Insulin has not been as fast but it risen just far as epinephrine.

A few states are taking this matter seriously. Nevada, at the beginning of this month, has a law that requires drugs companies to publicly explain any rise in cost for medications like insulin. Colorado is now trying to pass a similar law. These laws do not have any teeth to fine or otherwise force a lowering of costs but it makes them accountable to the public for WHY it is going up. Production costs have gone up with the wage increases we gave out this year. That’s great. Good to se that the massive tax break work its magic. Telling people that it going up because you want to buy a mansion in Brazil or pad your Cayman Island bank account will not go over as well.

I few other pro-diabetic bloggers have written about this issue and I just wanted to add my voice to theirs as well as add my views and experiences. There is no easy solution to this problem. If things are not changed in another 5 to 10 years I will have to sell my truck to get a bottle of insulin to live. At the current rate of increase that bottle of insulin will cost about $500. That is more than a weeks pay.

The free market system that is being touted as the best way to reduce the cost of our health care system is also the reason for this jump in medication prices. I’m not buying a can pop to quench a thirst, I’m buying a way for me to stay alive. I’m not getting  plastic surgery done because my nose is too big or thin, I’m keeping my blood sugars under control so I can maybe live a few more years. I wish I could believe in the free market system but it is system that is in no way free for me. I am chained to it like a horse to a plow. They raise the prices I have to pay it regardless. Like I said we are a captive audience in this show. We can’t get up and leave when we want. We have to stay seated or loose more than just our seat.

Interesting. Very interesting

I just had to get my first bottle of insulin earlier this week after my deductible was reset at the beginning of the year. I was worried about the cost coming out of my pocket but wanted to get it out of the way. Boy was I in for a surprise. I had expended my deductible to be out of the way by the end of the second week. $500 in 2 weeks is insane!

I had been reading tweets and Facebook posts from DOC members who have talked about inulin being $380 a bottle. They are not lying. That is how much it costs without an insurance company getting you a discounted rate on it. That is where I found it interesting. My cost, no insurance co pay, was only $146.

Why is this interesting? Stop and think about this for a minute. You and I both know there is no way they are not making a profit at that price. No company would ever let that happen. Why have a business if not to make money? So do some reverse thinking on it and look at the insane profit at full price. $380 minus $146 means each bottle of insulin nets them more $234 in profit. I say more than since they must be making a profit at even $146, but you don’t know how much. Incredible! I really feel for those with no or less than adequate insurance.

The biggest excuse the companies use is the high cost of research for the next big drug. If you look at their financial paperwork online (you can find it on their websites, all public companies are required to publish those documents) you see they are making 100s of millions of dollars in profits. I did not dig into it very far but my reasoning tells me that any money sunk into research gets deducted before the profits are listed. Its like any business, any income that is put back into the company is deducted as an expense to reduce income tax. Electricity, any machines bought for company use (office or factory), any advertising costs, and any costs such research.

So my point with this post is to raise an eyebrow to the fact that insulin prices seem to be pumped up artificially for nothing more than higher profit. I get that businesses are to make money. If you do that at the cost of people’s lives, that is another issue all together. People who lose their jobs or don’t make enough at minimum wage can not afford to stay medicated and either get very sick and end up on Medicaid or die. I work hard. I have insurance. Even with that the skyrocketing cost of my medication is stopping me from saving any money for retirement. I can’t afford a newer more efficient vehicle. I can’t fix all that is wrong with current transportation. I can’t fix all that is wrong with my house. I’ve never taken a vacation since it costs too much money. There are a lot of things I can’t afford to do.

Just as an add on complaint, it really angers me to hear the comeback “You just need to learn to live within your means.” What exactly does that mean? Do I give up eating for the month? Do I give up getting my meds for the month? Do I give up paying for the gas to get to work each month? Do I give up paying the loan on my house for the month? After all my bills are paid I have about $140 left to pay for any emergencies each month. I go to the movies 2 or 3 times a month so I can cut out about $40-$50 each month.

As bad as it is for me I know there are many more out there who are worse off than I am. That makes me sad and angry. Why? In a country where we are supposed to so great, are we so expensive? Greed. Plain and simple greed. These meds we diabetics and others afflicted with diseases needing medication are so much cheaper in other countries but when they found people going on line to get cheaper meds out of country, they legally closed that loop hole so you can no longer get them. You can still get them in the mail but they have to be from here in the states where they are nearly double or triple the cost. Shows you where some of that profit went.

Oh the Game We Play

One day ago I decided I needed to get another set of sensors for my Dexcom, and so the game begins. Why do insurance companies try to play games with our life saving medicines? Well I guess the Decom isn’t really keeping me alive but it helps prevent me from succumbing to the lows that can lead to much worse problems. Car wreck, getting hand stuck in a machine at work, or even as simple as not figuring my insulin right because my sugar is low.

I called 2 days ago to se if I still had a refill left on old Endos prescription. I evidentially had.. Here’s where this gets very weird and made me ask questions. Earlier this year I was talked into trying a pump again and it put me over the yearly out of pocket for my insurance. Sad part is the pump still does not work for me. We spent 2 almost 3 months trying to work things around to get it to stop alarming out (low and high) but nothing worked very well. I gave up on it but didn’t get it returned. That is another story.

Anyhow, I have been getting all my meds and supplies for $0 since then. After I got off the pump I started using the Dexcom again and had to get a set of transmitters. Those thumb sized little marvels of medicine are $1000 a piece and I got 2 of them for free. Well I thought it was going to be free but I ended up paying about $150 for my share. The insurance company gets a discount so they are less than $1000, maybe $990. I don’t know or care really. All my insulins and test strips are being paid 100% since trying the pump.

I get a call yesterday morning from the place supplying me with my Dexcom supplies and they tell me my credit card was declined. Wait, why was it even being used in the first place? I asked the lady why it wasn’t covered 100% by the insurance company. She told me they claimed there was $260 left on my out of pocket to pay. Huh???

I told her that was not right as they had been paying for everything since roughly June or July. She looked closer at my account and at the transmitters I had received months ago. Low and behold, they had listed the same amount, $260 as left on my out of pocket back then. The $1100 I had to cough up for that pump pushed my out of pocket over for the year. Someone who deals with insurance companies all day could not come up with an explanation for this weirdness. She also told me I had a $150 credit on my account.

I asked where that had come from and she told me the money I had paid for the transmitters had been switched to credit as the insurance company had paid the cost in full, after I paid out the co-pay amount so they had given it back as credit. Fine by me but what the hell is going on with my out of pocket costs being out of whack? She looked even closer and found they had done the came thing back then as now. They had showed I still had money to pay for out of pocket yet were paying 100% already back then. Anyone confused because I sure am. The company I was dealing with was very nice and reasonable about all this. She said she would apply my credit to cover the sensor but if, better be when, they pay in full they would return my credit.

Thank you so Diabetic Supply of the Middlelands. You went above and beyond with this issue. As far as Coresource goes, I’m watching you now. Now that I’ve seen one of your tricks I can watch for it next time. I hate playing games but when they are pushed on me, I will figure out the rules and use them to ruffle your feathers. Pluck them straight out if need be. If you are going to waste my time with stupid issues then I feel it only right to follow your example.

P.S. To add to all this confusion, I saw another endo at my then current endocrinologist’s behest to see if she had missed something as to why I was always dropping so low while on the pump. I again, my mistake I guess, thought it would be covered 100% even if not in the “group”. I now own them/her $385 for that visit as the insurance company refused to cover it, at all. Was it not preapproved? I kind of thought they would have checked that out first. I’ve never gotten a good answer to that one looking at my stuff on line. Really need to call about that one. Just another nail in the coffin of trust I had with them.

The Christmas Blah

All I can say is that anymore Christmas is not the fantastic holiday it used to be. Why? Too many of the people I used to spend time with on Christmas are gone. Now to be completely honest I’ve never been the big group kind of guy anyway. I hate crowds and try to limit the time spent in or around them. I never go to concerts, I avoid bars or restaurants that are crowded, and just melt into the background if I find myself in a crowded room or any other location. This will work fantastically for marketing my book and increasing sales, he says with a sarcastic tone in his voice. But still spending time with those closest to me was fun while it lasted.

My idea of a good holiday is to cook or even just eat a good meal. We had Mom’s egg noodles and I had fried chicken this year. Yes there was mashed tators, corn, rolls and other things but the main part was just chicken and noodles. During and then after the meal we watch a good movie or two and laugh and joke around. Ah the good old days.

My holiday now is still eating and a movie but it is much harder to accomplish (schedules) and there is little laughter in the air. Oh I love a good laugh as much as anybody and trust me I still have enough to laugh at but there are just not as many to laugh WITH now. That is a really good question. Is a joke still funny if there is no one there to laugh at it?

The aunt we spent Christmas with this year has dementia and I’m never sure she really recognizes us most of time. She will say she or act like she does but I wonder. It cut deep when she said “I haven’t seen you guys in  while.” She says that a lot but this time was worse because its true. I last saw her almost 2 weeks ago when I came in for one of her meetings and gave her a photo of her whole family back in the day. She was able to recognize most of the people in the photo but sadly can’t remember us or any recent events very well.

Diabetic wise this year was no different than previous years. High for various added carb intake scenarios. Being off work for an extended period does not help with this as I completely change all my activity times and levels. Where I normal sleep I am now awake and vice versa. That one sucks. I am using more basal insulin as sleeping during the night now I burn less carbs so need more insulin. We also have way too many added treats around the house this time of year. I always talk about trying to be normal and eating such treats is part of that normality.

I can not wait to get back to the way things are normally. Not that I actually like work, hate my temporary assignment currently, but I hate being out of sync more. I like being in a rut. Having the same timeline each day is nice, for me at least. If you haven’t guessed by now, this holiday has me depressed a little. No money to do anything really fun or interesting, few REAL friends to spend time with, and not getting nearly as much done as I had hoped on the extra long holiday break have taken its toll on my soul. I’m a poet and didn’t know it. Just getting things back to normal will be a big relief to me. I’m just waiting this out.