On April 20, 2017, I attended the Lilly Diabetes Insulin Access Workshop hosted by Lilly Diabetes. Lilly paid for my meals and travel expenses to and from the event. This is my first post about insulin pricing that uses data derived in part from that meeting. All opinions and thoughts are my own and not reflective of Eli Lilly and company or other attendees.
Today is the second day of Diabetes Blog week. Each day we have a prompt and are called to post a response. You can read all responses at my friend Karen’s site Bitter~Sweet. Also, please remember RABlog week will occur in September. I hope you join the fun then as well.
The Cost of a Chronic Illness – Tuesday 5/16
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?
I write this amid the escalating debate over the cost of insulin. Today, the retail cost of insulin is around $300.00 per vial. I have some strong opinions on the matter, and I believe that those opinions may be out of step with others in the diabetes community. But what else is new?
The simple fact is that insulin costs too much, and I have little hope that the cost will lessen anytime soon. I was not surprised by the Lilly price increase last week, and I will not be surprised to see more in the future from all three manufacturers.
So who is to blame for the cost increases? At the Insulin Summit, we discussed the role of PBM’s their demands for rebates and discounts as well as the role of insurance and of course the contribution of manufacturers in causing the escalating cost of insulin. What we did not examine and what we should talk about more is the role of the patient.
I am not going to blame our community in total for price increases, but we (including me) have a share of the responsibility. I know the question, how is this possible? Now, if you are still reading this item, hear me out before you click off.
For years we (I am as guilty as anyone) have demanded technological advances. I like having the leading edge pump. I love going to a JDRF event to hear the excitement over the “cure” whatever that may be. There is nothing wrong with that unless we lose sight of two things.
- That we must supply affordable technology and
- That the foundation of our technology is affordable insulin.
Over the past five years, neither other advocates or I have discussed affordability enough. Instead, we have pressed for new technology and new treatments. Believing that affordability will take care of itself as it always has.
While at the Insulin Summit, I heard a friend’s story about struggling to pay for insulin. The pump she wore was four generations older than the one I will be wearing later this year. Her pump was bruised and scarred while I am excited to get my second new one this year. This person is having difficulty affording insulin. It was apparent to me that as visions of new pumps danced in my head, a dream of living with insulin in her pump filled hers. This revelation gave me pause. I realize I have it good, right now; but if these last five months have taught me anything, it is that just because I am comfortable today does not mean I will be tomorrow.
A different approach needed
If we are to bring these costs under control, we as a community must formulate and enact a sustained effort aimed at lower insulin costs. Oh and for the record, complaining to manufacturers cannot be the total of our endeavors.
So what do I propose? Here are steps you can take right now to stimulate the process.
- Tell your pharmacist insulin costs too much. It is true they individually cannot change the price, but make it part of the routine when you order or pick up a prescription, it will sink in over time.
- Next time you buy insulin call your employer’s HR department or benefits person and tell them how much you spent and why that is too expensive. Employers are the one place where we can have a significant impact.
- After you tell your employer, tell your insurance company. Tell them on Facebook and tell them in other social media you use
- After you tell your insurer, tell your Pharmacy Benefit Manager (PBM) if you can find them and if you cannot locate them ask your insurer who to contact.
- Tell the manufacturer. Tell them loud and clear.
- Repeat this refrain every single time you buy insulin.
Then tell your federal representatives. Write a letter and explain the hardship. Even if you are like me and have it good, we must speak out. Otherwise, our time will be coming. I know you have a job, and this is not one you get paid directly for. No patient does. What I propose is a lot of work, and I am sorry to ask anyone to do it. But it is our only way to apply pressure where it belongs, namely on all parts of the system.
Under the hood of health insurance
At the Insulin Summit, we discussed why insulin costs so much. The factors that lead to the pricing structure and why those factors are so difficult to explain. That was fun for me; I like the ins and outs of health insurance. But in truth, it does not matter. We must hold the whole system responsible, let the players figure out what company will sacrifice and when. We cannot lose sight of the end game, the retail cost of insulin. What stakeholder caused the issue is beside the point. Our end game is the outcome, not the steps. No one player is more or less responsible. We cannot lose sight of the end game.
Finally, do the one last thing that will hold the entire system accountable. Tell each other. If we push this aside and get caught up in the next big thing, we will miss the chance to have our voice heard.
One person cannot change insulin pricing. One community cannot change insulin pricing, but we can with each individual’s help make this an issue worthy of a solution. We must sustain our effort and outcry. After all if my friend can not afford insulin, it does not matter what her pump can and cannot do.