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Diabetes is complex.

Access shouldn’t be.

Access to the appropriate care is critical to living successfully with diabetes. The best practice is individualized diabetes care programs, so what is appropriate may vary too. Our community’s stories reflect this.

We asked people with diabetes to tell their access stories. What they’ve written is powerful and shows that no matter what type of diabetes, what type of treatment plan, our community shares this in common: issues with accessing the medications, devices, and care that their medical team has prescribed.

 

Want to add your story? Click here.

Our Community’s Access Stories

Here are some excerpts from these stories, offered up as testaments to the issue of access in the diabetes community:

Riva G.

I have had type 1 diabetes 44 years since the age of 18. I have seen diabetes drugs and devices blossom so that people can have the best individualized therapy helping patients enormously to manage their diabetes. And now, it is all going away.

How can we have moved so far forward to now going backward?

 

Chris S.

Nobody knows my life better than me. So, for an insurance company to dictate and tell me what my best options are is outrageous.

I once ended up in the Emergency Room because the brand of insulin I was using was changed by the insurance company. The two brands are similar, but they are different at the same time. The amount of insulin used from one brand varies from the amount I need from the other.

Because of this force switched from the insurance company, my insulin ratios were off and sent me to the emergency room due to a high blood sugar level that could have left me in a coma.
All because the insurance company dictated what insulin I had to use.

Phyllis K.

Several years ago my pharmacy benefit manager Express Scripts informed me the blood glucose strips I had been using were no longer covered. The preferred strips/brand were One Touch. For me, One Touch meters consistently had me at higher blood glucose level, which meant I ended up have un-necessary low blood sugar due to treating a high I didn’t have. My doctor was able to submit an authorization letter and the strips, and I was able to get them, but at double the cost of what the preferred brand were.

2-3 years ago, Express Scripts determined they were not going to cover Novolog insulin, only Humalog insulin.

Just this year, I tried to fill a prescription for Victoza (also Novo-Nordisk). My doctor submitted an appeal for it, and it was rejected since Express Scripts does not cover anything by NovoNordisk.
Living with diabetes is hard. We are told to reduce stress, yet dealing with all of the insurance hassles is VERY stressful. Some things end up being covered with a fight, at a much higher price. Some end up not being covered at all and as such, a company that is not familiar with me, or my specific health issues plays doctor by mandating what medications, devices they will cover.

Clayton M.

Our 7 year old daughter was diagnosed in 2012. We have been using a CGM since early 2014. Since then it’s been a constant battle with our insurance company to have her CGM sensors covered.

It is mind-boggling that insurance companies issue these denials and make us jump through these hoops in order to obtain coverage on what is truly a life-changing and life-saving product.

Allison C.

Last year my insurance changed again and I was told I could no longer use the insulin I had been on for 8 years. I was required to use Humalog, even though I had issues with high blood sugar when using it after being diagnosed. Because it had been so many years, the insurance required me to use it anyway for 3 months to prove that it does not work for me. My A1C increased by 0.5 from 6.5 to 7.0 in those 3 months of using Humalog instead of Novolog. Instead of the insurance just giving me the insulin I was used to, they made me suffer from high blood sugar for 3 months that negatively impacted my health.

I currently am able to access all of the treatment medications and devices I need but every insurance change brings a new battle and I am left in limbo until the insurance company makes a decision. If my doctor and I feel that a medication or treatment device is working for me and improving my health, then that is what I should be given. A company that knows nothing about my health should not have a say in what devices or medications I use. I should also not have to prove to them that a medication is not effective for me and risk the potential side effects of such a trial.

Kim H.

My husband is a diabetic for over 30 years and considered “brittle”. Uncontrolled. He had 4 car accidents due to low blood sugars. His last accident was almost fatal. He is now disabled and I had to quit my job to stay at home to care for him.

We were told of a CGM when he was near coming home and we applied for it and got it through insurance. He has nocturnal lows almost every night without feeling them. He is now on Medicare and CGM’s are not covered. This is a life saving device for him. We are going to have to go through all appeals processes. His accident cost almost 3 million dollars and would NOT have happened IF he was wearing his Dexcom CGM. I can’t believe insurance, government, etc., can now mandate on top of our premiums we PAY what we use, if our doctors approve it!!

Phoebe N.

Why does an insurance company, who’s never met me, never given me medical advice, never had do deal with the decisions I make everyday, get to decide what’s best for me?

Stacey D.

 All insulins, glucose meters, insulin pumps, continuous glucose monitor systems, oral medications are NOT the same. And not everyone’s bodies react the same. People with diabetes should be able to choose what will keep them the most healthy and not be FORCED to use something that is deemed “better” than the rest.

Mark G.

I’m Type 2 on insulin. Endo prescribed pump to avoid regular hypos. UHC denied claim even upon peer review, saying pumps are only for HIGHS, CGMS are allowed for lows. One week later, they denied my renewal script for a CGM!

Three times, they insisted I “try” Humalog, even though I am ALLERGIC to it. So far, each of these denials has been “managed” though I had to pay for pump out-of-pocket, they cover supplies (so far) …

Still, I cringe with every new order and every new script… when will the next denial occur? My insurance has never cost more, and never been as difficult to use as it does now!

Joanne W.

I’ve had type 1 diabetes for 48 years. For about 8 years now I’ve been fortunate to have continuous glucose monitoring. I can confirm that hypoglycemia unawareness increases after 60–I’m 62 and increasingly unaware. That CGM keeps me informed and prompts me to take action; otherwise there’s a risk of seizure, unconsciousness and death.

I now dread the time when I have to rely on Medicare, which doesn’t cover CGM. It feels like punishment for taking care of myself all these years.

Over 29 million Americans (and their families) live with diabetes. Each of them have their own treatment plan, created with their healthcare team to ensure healthy outcomes. There are hundreds of diabetes medications currently available and several devices on the market to assist in ensuring daily life with diabetes is manageable.

Restricting access, whether through restrictive contracts with insurance companies and pharmacy benefit managers, endless appeals processes that can take months or years, or prohibitive prescription costs, does not help those who need it most: the patient. By restricting access, care prescribed by those who know the patient best: the healthcare team, is negated and swept aside.

One size does not fit all when it comes to diabetes care. Our community knows this. It’s time for the rest of the United States to know this as well.

What Can You Do Right Now?

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  1. Share your story about what you and your family must do to keep healthy with diabetes, despite access issues.
  2. Join for free as a DPAC Insider so as the community builds an action plan (using the stories you have shared!), you’ll be the first to know.
  3. Share this post with your community using the share links below.