Category: Cost of Diabetes

Living with T1D in Honduras

To whoever reads this letter:

Hello, my name is Alejandra Solis and I’ve been a T1D for 10 years and also a Honduras citizen since I was born. Yes, you read it right, Honduras a republic located in Central America surrounded by so much natural beauty and many beautiful people who work hard to get their own food to their homes. Honduras has so much to offer starting by the many touristic places you can visit, the food, the beaches, the traditions and the people but pitifully our country has been destroyed little by little for our government and the people who lead it.

I’m not going to talk about Honduras and its lack of democracy, instead I’m going to talk about living with T1D in Honduras and what it implies, but before let me tell you a little bit about my story.

Honduras is a country with a very poor education system in all aspects which implies the poor knowledge people has about T1D (which is pretty common in almost all the world).

I was bullied at school due to my deficiency and because kids at my school didn’t know what it really was like to live with T1D. I missed a lot of days of school because of my high and low blood glucose so I had to change from school to school because of the bullying and the lack of consideration from the teachers. Not all the people at this schools were bad but because of the lack of knowledge they had about T1D they assumed living with T1D was all about not eating sugar and taking your medicine something really funny to me because if this was the case, then living with T1D would be as easy as counting 1 plus 1.

I graduated from high school and started studying medicine just months after my graduation but it was such a battle to get into medical school and not because of my grades, but because of discrimination from people who did not believe in me.

I’ve never been someone who lets diabetes stop me from achieving my goals and getting into medical school was not the case, so I fought to let this people who did not believe in me know that even though I live with T1D I could have the potential to be one of the best medical students. I remember going to my endocrinologist one day and he asked me what I was doing with my life and I told him I got into medical school, then he looked at me and laughed about me because he said diabetics do not have the potential to deal with all the pressure a medical student deals with specially when it comes to rotations.

I remember feeling destroyed by that comment because I considered my endocrinologist as the only person who actually understood what it was to really live with T1D. And to hear him laughing about my T1D just as the people who discriminated me at school made me feel as if I was alone and as if I could not continue in medical school. I wanted to give up but there they were, my parents, to make me believe in myself again so here I am thanks to them, making my dream come true.

Other than dealing with discrimination people with T1D suffer from lack of medication because many people has no job or they have a job but the payment is not enough to buy all medication and the right food to have a diet a T1D needs and enjoys.

The insurance company does not provides us with insulin so we must look for ways to get the money to but it and its because of this reason that many kids die from complications of not well treated T1D. We, the people who live in the city, have a better chance to get a decent job in order to have enough money to buy insulin and visit an endocrinologist and I’m aware that sometimes you have to adapt to a diet that is not the best one but the less expensive prevailing us like this from a diet we can enjoy to one that can help us keep our blood sugar regular and have long life.

I’ve had the opportunity of going to many towns in Honduras and watch by myself the misery in which these people live. Many of these people do not have a glucometer and therefore insulin which leads to the next point: their diet; it consists of rice and beans, soda as Coca Cola, coffee and sweat bread.

The government does not look for these people and the critic condition of their health which is something to worry about because many of this people does not even know they have T1D. Or even worse they do not know how to treat it because no one explains to them what it is and how to control it. Actually Honduras is in a very critical turmoil where many innocent people are being killed, immense amount of violence everywhere, there is not enough incomes to get food for a decent diet and definitely not enough money to buy insulin (not even for the people who live in the city).

My intention with this letter is to make the world see how hard living with T1D is. And even more in Honduras, to make them see the scars, the effort a T1D does in order to keep alive and to make them have conscious whenever they judge a T1D.

I claim people to have consideration and not only for the tiny holes on a T1D fingers from the pricks or the small dots on our body from the needles. The deeper ones, the scars that wont fade. The upset we go through, the days we cant control, the highs that makes us weak. The tears we, Honduran T1D, cry for not having the governments support, the emotions we cant control and the smile we force even on the hard days, the impotence I feel for not being able to help people with no job to get their treatment. It’s my wish to make this peoples voice be heard and make the world see that living with T1D is really a full time job not paid.

Sincerely,
a Honduran T1D.


I've Got 99 Problems And Insurance Is One

I’ve Got 99 Problems, And Insurance Is One

I’ve Got 99 Problems, And Insurance Is One

By: Angela Boeddeker


I’ve been denied by Anthem insurance for a new up to date insulin pump. Anthem states the insulin pump is investigational.. NOT a medical necessity. The Medtronic 670 G insulin pump would allow me to live a little less stressed.. Help me sleep with a little more ease. Let me finally have some confidence in my form of insulin therapy.

I’ve been pumping for a whopping 7 months and if you lived in my home, you would know the TREMENDOUS difference this has made in my life. My A1C has dramatically decreased at every doctors visit since beginning the pump, too, but let’s be honest here, Anthem doesn’t have a clue!

The 670 G insulin pump is the first of its kind. With the ability to adjust and even stop the amount of insulin being released.. Wait for it… WITHOUT ME!

The 670G has a blood glucose target range of 120. Once the also newly upgraded Guardian Sensor 3 detects my BG is declining, it changes the amount of insulin being released so I won’t have to worry about severely dropping below 70 for my insulin pump to suspend itself.

The last 2 words of the previous sentence speak loudly to me, as it should to you. Why on earth would i want to suspend my lifeline? And for that matter, if my insulin pump suspends in the middle of the night, it will not resume for 2 hours on it’s own. (Hello, glucose readings over 300!)

Insurance

Diabetes is the MOST difficult, but ghostly disease ever heard of in my personal opinion. Just because we look ok (unless we are rocking off the usual 3-5 hours of sleep because the blood sugars kept lifting our heavy eyelids with beeps, vibrations and chirps every time our restless minds dosed off to place of no disease) doesn’t mean we feel ok.

Why limit a person from receiving any possible chance of living a more balanced and enjoyable life?

The Medtronic’s 670 G news was a tearful article to read—happy tears though. I truly thought, ” Angela, this may be your way to live a little more like the rest, a chance to battle with the best, and its about time you got this off your chest”.

So, here’s looking at you million and one insurance companies, dig a little deeper to the reasons for our submissions of countless claims, repeated phone calls and an abundance of emails. We just want to live a long, non medically consumed life! Not to mention a just a good night’s rest!



 

This Disease Is a Catch 22 - Pay The Price Or Pay With My Life

This Disease Is a Catch-22: Pay The Price Or Pay With My Life

This Disease Is a Catch-22: Pay The Price Or Pay With My Life

By: Kayla Bushue

 

Almost 15 years ago I was diagnosed with type 1 diabetes – an autoimmune, incurable disease.

I’ve been pretty lucky thus far. I didn’t take care of myself early on or really anytime; except for during my pregnancy and the time I’ve had my insulin pump. But I did some number crunching tonight just for funsies.

Per month BEFORE insurance the cost to keep me on planet earth is $1,353.37. That’s for insulin, infusion sets, and test strips alone not including hospital stays due to DKA. Now insurance foots a lot of that bill which I’m thankful for.

Credit: Kathy Austin

But why when I live in one of the top countries in the world does it cost me $16,240.44 per year to stay ALIVE???

I understand there are places that don’t have access to the healthcare that I have. Don’t get me wrong I’m grateful I have access to insulin, my pump, and test strips that keep me here everyday. I also understand the older I get the more complications I will have due to this terrifying and one day terminal disease.

But here is my perspective.

I pay a hefty chunk of change to keep myself thriving, OR I skimp by on the bare minimums and deal with the complications. This disease is a catch 22 – pay the price or pay with my life.

Credit: Kathy Austin

Something about having a disease like this doesn’t seem right. I either pay for my medicine or I don’t and deal with the death sentence. I just don’t get it.

In February my approximate cost over the last 15 years is $243,606.60. It’d be nice to have 2017 Aston Martin Vanquish in my driveway; rather than that almost quarter of a million going to keeping me alive.

Here is where you can learn more about the cost of type 1 diabetes, how to get involved, and how to help protect our rights for affordable healthcare.



 

The cost of diabetes

Diabetes Blog Week: How The Cost Of Diabetes Impacts Care

How The Cost Of Diabetes Impacts Care

Diabetes Blog Week (Day 2): Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

This is a topic that I have personally dealt with first hand. The cost of diabetes DOES impact our care.

When I was 19 years old-

I was no longer living with my parents. I was dropped from insurance and was pretty thrown to the wolves (as you would say). I worked a minimum wage job and wasn’t provided benefits. The money I did make went to rent, food, and the insulin that I could afford.

The status quo is that “diabetes is manageable”. I would agree, but only when you have the supplies needed to manage.

 

I only got by—but I wasn’t thriving. I used short acting insulin as my 24/hr insulin by just syringe (which is heavily risky). I then had to re-use syringes until it became painful to use them. I couldn’t afford test strips and would maybe check my blood sugar once or twice a day. Seeing a doctor was completely out of the question at the time.

I applied for Medicaid and Medicare due to income and disability. But was later denied because I didn’t fit into the criteria. I was devastated and felt helpless. I eventually found the patient assistance programs through the pharmaceutical companies that provided the insulin that I use.

Years later-

I do have insurance and I do have the cool gadgets and necessities. I can’t even begin to tell you how much having access to healthcare coverage means to me. Having what I need in order to live a full functioning life.

I’m still trying to catch up in life from the years that I was suffering. I believe it does take a toll on an individual or family financially/emotionally/ and it affects the ability to prepare for the future.

With diabetes it’s all about trying to survive from one day to the next—and cost should not be an issue.

Would You Kill Me For a Tax Cut?

Would You Kill Me For a Tax Cut?

By: Ashlyn Mills

Blog: A Trail Of Test Strips

Before I get into the meat of this issue, I want you to imagine something…

You are 19 years old and a sophomore in college with your whole life ahead of you. Suddenly, you begin feeling ill. You are thirsty all of the time, you feel lethargic and can barely make it through 5 hours of classes without a nap in your car, something is not right and you know it. You finally go to the doctor after you’ve lost 10 pounds and the doctor tells you that you have Type 1 Diabetes (T1D).

The doctor tells you that T1D is an autoimmune condition that has no cure and teaches you what you must do to keep yourself alive. After learning about carb counting, insulin injections, blood sugar testing, and life threatening high and low blood sugar, you’re sent to the pharmacy to pick up your life saving tools.

For the next 3 months supply, you are given 900 blood glucose test strips, 900 lancets, a blood glucose meter, 6 insulin pens, 50 ketone test strips, and 540 needles to use for insulin injections. All of these supplies would have been upwards of $5,000 without good insurance coverage and even with insurance, your first trip to the pharmacy cost you $400.

Now that I’ve painted a picture for you, let me put a face to this story. This is me, Ashlyn, and this is what a pre-existing condition looks like. The story above is my story. 

As you probably know, yesterday the House of Representatives made the decision to repeal and replace the Affordable Care Act, also known as Obama Care. Obama Care has been a major topic of debate for Americans over recent years. With the ACA, many American’s saw their insurance premiums skyrocket, which made the Affordable Care Act not so affordable.

With the ACA did come some positives such as protection for those with pre-existing conditions and the ability for an adult under the age of 27 to stay on their parents’ health insurance. At the beginning of his campaign, President Trump began pushing the issue of the ACA and saying that should he be elected, it would be one of the first things on his agenda. President Trump also insured that with this repeal, he would protect those with pre-existing conditions. Yesterday, however, the House voted against protecting those with pre-existing conditions.

If you aren’t someone with a pre-existing condition or don’t have a child with one, you probably don’t understand how serious this is. Let me tell you what this could do to people like me.
Insurance companies will be able to decide if they want to cover me or not. I will have to search high and low for an insurance company who will cover me and when I finally find one, they will charge me 3x what they charge the average patient because they know I will be a guaranteed expense.

I will then be paying $3000+ per month just for insurance premiums, which will make many of my daily meds and technologies unaffordable. I may have to limit how many test strips I can afford, which will then limit how many times per day I can test my blood sugar. The less I am able to test my blood sugar, the greater my risk for life threatening high and low blood sugars and long-term complications due to poorly managed diabetes. Meanwhile, some celebrate because they got a tax cut. But those who celebrate don’t know that their tax cut could kill me or the other millions of American’s like me living with a pre-existing condition.

Would YOU kill ME for a tax-cut?

 It all boils down to this, republican or democrat, it is important for you to understand how much this decision could impact me if the senate votes yes in the next few weeks. PLEASE, do your research and contact your senator to let them know that this is NOT okay. I am actually registered republican, but that does not mean I have to stand for this and neither do you. While I believe some MAJOR changes need to be made with our current healthcare system (the ACA) in the US, I do not believe that changes need to be made at the expense of people who have no control of the cards they were dealt. Life with diseases like T1D is hard enough as it is, please don’t make it any harder on us.

TAX CUT

Please contact your senator, my life depends on it.

-Ashlyn 

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We Are Dying For a Cure

We Are Dying For a Cure

We Are Dying For a Cure

By: Eddy Murphy

 

I’ve fought off writing about diabetes in an honest and truthful way for almost fifteen years. I guess it’s taken me that long to come out of a state of denial, becoming more intimate with it than anything I’ve ever been passionate about.

Perhaps my shame is what has gotten the best of me. I never wanted to admit that, by default, I was weaker than everyone else around me. It has taken me this long to realize that I’m stronger than everyone I know.

I’ve hazily confronted death more than fifty times, waking up in a hospital more than once, or coming to my senses watching my mother wince in pain, holding her belly, saying I inadvertently punched her in the gut while in the throes of a hypoglycemic seizure.

We were both soaked in orange juice turning sticky, when whatever sugar made its way into my bloodstream, brought me back from the brink of death. And because of times like these, it has been hard for me to accept my worth as a human being.

I hate drawing insulin out of a syringe, knowing it could be my last.

I hate doing my necessary rituals of survival in front of my friends, backpacking through the mountains of my heart, because, in the moment, everything else is beautiful.

I just want to revel in the earth that is my home, and then I have to confront this ugly thing, grab it by the horns and tell it I’m not going anywhere. Not now. I’m going to live this moment.

There’s this superficial feeling I get, where I am validating myself by taking type 1 diabetes on, thirty miles from nowhere while experiencing the most beautiful places I have ever been. As if I’m doing things most other people are afraid to do, while being at the mercy of the whims of an overpriced drug that I have to love and hate simultaneously. It is a feat to come out of every trip into the mountains unscathed, deflecting a scythe with a smile.

Before, I would have life-altering lows to bring me out of my denial. I would only check my sugars 3 or so times a day, not catching highs until way beyond their reign. And seldom would I realize I was two glucose tabs away from death, getting closely reacquainted with diabetes when my hands began to seize and I couldn’t speak. Thankfully, circumstances have worked in my favor all these years. Someone was there, or I caught the tail end of consciousness before things went too far down.

Now, I’m a man. A man who feels his age and more. I love a woman with every flame left in my soul. I am grateful that someone accepts me for all my shortcomings; more importantly, I am grateful that someone appreciates the enormity of my life’s battle. What a human thing it is to love. It is the music of the human experience and I get to embrace it after all these years of not feeling human anymore.

Consequentially, I feel the need to revel in every moment I spend with this beautiful person. My life has been an imitation of the real thing for fifteen years until now. Love knows no diseases. Because of this, I am even more angrier now than ever before about the ugly greed of the pharmaceutical companies, the FDAs lackadaisical approach to pushing forward a potential cure/cure’s, and the ignorance of the general public to the suffering of 1.2 million people who have been stripped of a future.

I mean this in every sense. 1.2 million people in this country could die at any moment, yet ‘with proper management could live a happy and fulfilling life’.

Because of the requirement of insulin and the perpetuity of type 1 diabetes, it is a cash cow for large pharmaceutical companies and doctors across the country. And if my life ends in tragedy, I can be blamed by citing “improper management”. At least they got their bag of silver, and will still do so as long as this disease remains with a cure and profitable.

So for now, my wallet is being squeezed dry, and I’m being forced to be grateful for just being alive. I have no assets. I will never be able to afford the land in Montana I want. In truth, I am living in what would amount to Great Depression standards of living. And the public doesn’t know or care because the majority of the media attention is given to type 2 diabetes.

No one gives heed to our deadly fight because diabetes as a whole is linked to laziness and poor diet.

In the meantime, all of our non-type 1 friends will continue to make jokes about us shooting up drugs and having too much sugar as a kid. Many in the support community are cute about type 1. “Christmas is a time to be grateful” and “T1D looks like me”. I am not sure if censorship helps the cause. Trying to make others aware of this dangerous disease by dodging the real tragedy of it is what has stunted any real instigation of progress in the type 1 activism culture. Victims cower in the corner, unsure of how to convince the general public of the need for a cure.

The last fifteen years I resigned my unworthiness to type 1 diabetes, and couldn’t fathom the heroics of what I did by walking through the mountains to improve my life. I couldn’t fathom my own significance in educating people about the injustices we face everyday, and the urgency of this moment.

We are dying for a cure.  


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