Worry about insulin hand-in-hand with high cost and access

Has your doctor ever asked, do you worry about getting your insulin? Worry about getting insulin can be terrifying. People with type 1 diabetes can’t live without it. Sadly, it’s always been a problem for some.  Today, however, insulin access and affordability have never been as much in the news as they are now mostly because insulin has become unaffordable for many people in the USA.  This is shocking for the globe and life-threatening for those confronted by the high cost.

As a global federation, the International Diabetes Federation is connected to a large population with diabetes and therefore is also aware of the wide discrepancies that exist in access to care and medication.  Despite the history of insulin (the patent sold for $1 dollar in 1923), people with type 1 continue to struggle — even though the disease uniformly requires that one essential hormone, a healthy diet, and access to blood glucose measuring tools and injectables.

Lorenzo Piemonte, Communications Manager for IDF, from Brussels, Belgium and two Blue Circle Voices network members, Jane Kigotho from Kenya and William Dubois from the USA talk about insulin access and their type 1 diabetes fears and vulnerabilities.  The differences in both cost and “best practice” from country to country are startling.

Have you ever felt afraid that you might run out of insulin one day?  If yes, how did you manage the anxiety?

Brussels, Belgium 

I’ve been living with type 1 diabetes for over 25 years and can’t recall ever being anxious about where my next injection of insulin would come from. Supply has never been an issue.

Kenya, Africa

Yes, I have worried many times about what to do when your insulin vial is getting less full day by day. This is because in those early days it was very costly. (24 dollars per vial). So what I used do was to ration my insulin and only inject once a day in the morning.

USA

Our lives are measured in days at best, and hours at worst, without insulin. It’s a constant, never ending thing in the background. Like radiation from a nuclear blast. I manage it by recognizing it, acknowledging it, and not letting it run my life. I also try to keep more insulin than I realistically need on hand. When in the past, both while travelling – I was terrified. I’ve had several times when I didn’t have insulin. One was from a broken penfill on a short trip. Another time I got separated from my basal and all but one pen needle while traveling. Both experiences were terrifying.

Do you still worry about insulin affordability or availability today? If not, what kinds of things make you worried about your diabetes?

Brussels, Belgium 

Access to insulin is still not a worry for me and I take it for granted that I will always be able get insulin when I need it. My main worry concerns keeping my diabetes well-managed to avoid complications.

Kenya, Africa

Today I don’t get worried due to a lot of campaign advocacy done from 2012 by Kenya Defeat Diabetes Association—insulin cost is better now because it is 5 dollars.  However, people still worry about insulin stock; they are fearful it will run out.  The other fear is not having a syringe for the injection.

USA

I worry about the dark storm clouds on the horizon. I’ve seen the skyrocketing cost of insulin. I worry that the cost will become so high that my coverage will become restricted. I am also concerned about my diabetes “brothers and sisters” who are less lucky than me.

When you need another vial or cartridge/pen, what do you do? 

Brussels, Belgium 

I visit my endocrinologist twice a year and usually get prescriptions for the insulin I need for the period between visits. Sometimes I ask for more. I go to a pharmacy with my prescriptions to pick up my insulin. I don’t pay anything.

Kenya

For a vial of insulin, I pay $5.  Cost for my syringes is #7.50 per month.  I can go to the pharmacy or the hospital clinic or a Faith based facility to pick up supplies.

USA

Our current insurance, which is the “expanded” Medicaid gives me the insulin for free, but restricts the brand and restricts the supply to 30-days. I came within $50 of making too much money this year to keep this insurance. If I make too much money this year, I’ll lose coverage and have to purchase commercial insurance. If that happens, our expenses will skyrocket with premiums and copays, and our real income will plummet. It’s crazy.

Do you hoard, stockpile or create a reserve of insulin for yourself?  Do you think this is rational?  Why?

Brussels, Belgium 

I don’t stockpile insulin but sometimes get one or more boxes of pens or cartridges that I would need before my next visit with my endocrinologist.

Kenya, Africa

I used to do that when insulin stock outages existed and insulin was expensive, but nowadays insulin is available.

USA

I do, and no, it’s not rational, because I’ve never been without for any length of time. But I used to work in community health and I saw many people run out, stretch supplies, and have bad outcomes.

What type of insulin do you use?  Are you familiar with the brand?

Brussels, Belgium (EU)

I use Lantus and NovoRapid or FIASP (most recently). I’ve been using both for many years now.

Kenya, Africa

I use Mixtard 30/70 and inject twice a day.

USA

I use Levemir for my basal and Novolog for my fast-acting. The basal is a flex pen. The fast is in a ½ unit re-fillable type. I could get a pump, but I don’t care for the options right now. I used to use Trulicity off label to very good effect but my current insurance won’t cover it and the retail price is far more than I can afford, so my A1C and glycemic variably are worse for it. I know this means I could live a shorter life with more complications. It makes me mad, both from the lack of humanity and the simple short-sightedness of it. If I am healthy, I cost less later. Surely, even greed-driven people should be able to see this.

How do you feel about the United States – the wealthiest country in the world – having people who cannot afford their insulin and as a result, must ration. Some people have died. 

Brussels, Belgium (EU)

I think it’s totally unacceptable in a country that has more than enough funds to subsidise or ensure affordable access to insulin and other essential diabetes medication for all those who need them. Diabetes is not a choice, so people affected shouldn’t have to worry about having to find the money to pay for something they need to survive and stay healthy.

Kenya, Africa

It’s sadly ironic. The USA can’t pretend to other nations that they are wealthy while people are dying due to lack of insulin. This is one of the countries where you would hope that you can apply for donation to assist your people.

USA

It’s a crime. Worse. A sin. History will judge us harshly.

What makes you angriest about type 1 diabetes? Stigma, the cost of care or its incurable status are examples?

Brussels, Belgium (EU)

I’ve always lived quite comfortably with the condition but I still can’t say that I’m control of it and probably never will. Diabetes is always good at surprising you when you least expect it! Having not to prick my fingers on a daily basis to measure my blood glucose has definitely made my life easier and I look forward to further advances that will make diabetes less inconvenient. Finding a cure, of course, wouldn’t be bad either…

Kenya, Africa

What I hate most is the discrimination from peers and other members of society.  Stigma is an issue because you don’t what’s coming tomorrow in terms of complications.  The cost of care is unbearable.  This is because diabetes is not just medication. A lot of education and empowerment is needed for proper control.

USA

The cost makes me angry. Right now, my insurance is pretty good, but that hasn’t always been the case. There was a time when my insurance cost me nearly a third of my gross income. That was just the premiums, before co-pays. At one time more than half my income went to supporting my diabetes. My family missed out on many, many things that other families got to enjoy. Travel. Theatre. A meal out. Cars without bald tires. Of course, the cost of insurance in our country isn’t just diabetes-specific. It affects us all, and I also get angry by how stupid people (citizens and politicians) are about attempts to roll out effective universal health care for our people.

If someone called or came to you and told you they ran out of insulin, and didn’t know what to do – what would you tell them?

Brussels, Belgium (EU)

I would help them with any supply I had or, if I didn’t have enough, get a prescription to help them access it. Knowing first-hand how vital insulin is to someone with type 1 diabetes, doing nothing would not be an option.

Africa

Kenya

I would show them where to get it because I know where insulin is the most affordable – even for $3.30 a vial.

USA

This happens to me more often than you’d think. I advise three things: If you can get to me, I will share what I have with you. If you can’t get to me, and have no money, go to the Emergency room. If you have some money (but not hundreds of $$$ like the analogues cost out of pocket) go to a retail drug store and ask for N or R. Both are actually affordable, and do not require a prescription in the US.

Next week we will hear from people with type 1 diabetes from South Africa, Iran, and another perspective from the USA.   If you would like to share your perspective, please send an email to diabetesvoice@idf.org or make a comment below.

Thank you to Lorenzo, Jane and William for sharing their stories.