Are You an Advocate…Yes and Yes!!!

Are You an Advocate…Yes and Yes!!!

Are you constantly finding yourself upset about the insulin pricing crisis?  You call in your refill and upon picking it up you struggle to find the words as you fumble for your wallet to pay a ridiculous $1200 for a 90 day supply (4 vials) of life sustaining liquid in a tiny bottle.  You wonder what happened over the years and why the costs are sky-rocketing to a point that trade-offs have to be made, lives are being lost, and the “what-ifs” are sinking in.  Lots of people dependent on an outside insulin source (injections/pump) are finding themselves in similar situations.  This is how I found myself over the last year, traveling to Canada for affordability purposes:  the exact same insulin costing $30 per vial there costs $300 per vial here.  It is infuriating that we literally have to pay to live.  This catapulted me into advocacy mode.  Emailing our state governor and state representatives in Congress, seeking out advocacy groups to learn more and join together for a stronger voice for change.   Insulin access and insulin pricing is a world-wide problem.  If you find that this moves you in such a way as it did me, there are things you can do!  

I researched different advocacy groups to educate myself on their purpose and activities towards battling a seemingly huge pharma monster.  I have already learned so much in the past few months.  I want to be in the midst of changing a broken and corrupted healthcare system.  I want to see people like me smiling because they aren’t worried about how they will pay for their needed medical devices and prescriptions.  I am beyond sad and frustrated hearing about the passing of someone because they had to ration insulin or they could not afford their insulin so they stopped eating.  This is a huge problem and we must address it and we must change it.  We should not have to travel to another country to get what we need.  It is available, here and now, and costs pennies on the dollar to manufacture.  We need to use the anger we have over this situation to stir and invoke a movement of positive change.  People need us to speak out, people want to live freely without worry, people need advocacy to bring about a lifestyle where they can achieve their dreams.  Here is a list of advocacy organizations if you need a starting point:

T1International

Diabetes Patient Advocacy Coalition

American Diabetes Association (become an ADA influencer)

This is a battle with many branches:  there is a legislative fight at the federal and state levels, there is big pharma influence with the insulin manufacturers linked to the pharmacy benefit managers, and there is educating and involving our local communities who aren’t aware.  We were never meant to “do life” alone thus we were never meant to fight alone.  

Wars can be won.  It takes motivation, desire, vision, purpose, and determination...a wave just has to start with one person, then it catches on to another, and another until it builds momentum and cannot be stopped.

5 comments

As if having diabetes isn’t enough of a struggle; constantly having to be thinking about daily struggles of managing blood sugars, what to eat/not to eat, how daily stresses will impact it, exercise/activities etc…your mind never rests! If you keep your blood sugars too low, you are at risk of “bottoming out” and dying, if they run too high for a long period of time, you are at risk of kidney damage, losing your vision, amputation, heart attack, stroke, etc. Do I need to go on? Then you have to work more just to be able to dump a significant amount of your income on…NOT something you want or something you want to do, but on insurance, supplies and meds; just to stay alive. Five hundred dollars a month would pay for a nice new vehicle! That would be nice! Not for a diabetic. You have to dump it down the drain for insulin just to stay alive! And on one hand we are lucky if we even have descent insurance coverage, but disgusting to even have to consider dumping over $500/month for insulin (just one of your meds)! It’s exhausting and beyond frustrating! The health care system is such a mess! And how is it that one person has to one price for a med, when another person pays a totally different price for the same med? There should be a set price for a given product. I’m tired, frustrated and disgusted!

Nancy Niederschulte

Michelle check with a group called diabetes pay it forward USA. They have a Facebook page and provide a lot of supplies and equipment

Sissy

I just lost my Dexcom G6 which saved my life and now it’s gone because of the prices! Now my blood sugars are spiraling out of control again! It’s sad…

Michelle Money

I don’t have a problem with companies making an honest profit, an HONEST PROFIT! The increase in the cost of insulin is nothing short of price gauging and profiteering, both of which are illegal. If gas companies can’t do it during an emergency then pharmacology companies should not be able to do it period. I should not have to chose between purchasing my chemotherapy drugs and insulin or purchasing food for my wife and I each month: and we have good health insurance through her employer. The ever increasing deductibles and out of pocket levels are as much to blame as drug costs.

Chris Moore

Price of insulin, pumps and CGMs are all ridiculous. It’s shameful that individuals with Type 1 or 2 Diabetes have to worry about BIG PHARMA and their illness!

John Nicholson

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