The Cost
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.
Prompt
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?
Escalating Debate
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.
The basics matter
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.
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rick
wonderful post, so clear and so important. In Australia our insulin is subsidized by the government medical system. I pay very little, but sometimes when I travel to other countries I have to buy extra insulin. Recently in South Africa the pharmacist looked at the price of the long-acting I was buying and went over to the cashier and said. this is way too expensive and gave me a massive discount. I paid a 1/4 of the price…I was so touched and floored and obviously grateful.
I find my pharmacists are my best cost advocates. I am glad you found a great one in South Africa. Sometimes life is perfectly unexpected.
Yes, we need to make this issue worthy of a solution…I love that line!
Thank you, Kelly. I appreciate the kind words. I know as I read the wonderful posts today I was truly moved by the stories. It drove the issue home once again.
I agree that we haven’t discussed affordability as much as we should have, and I’m glad to see that changing. Thank you for that great list of action items.
Karen, When I got married, we had no insurance and buying insulin was not a big deal even on two part-time paychecks and me in college. I have tried to think all day about when and how it changed so dramatically. I recall the first major jump in pricing was in the early 80;s when a vial went from $14.00 to $22.00. It has been a long time since I have purchased insulin without insurance coverage, but I was amazed when I asked the pharmacist how much it cost. I was amazed, wow things have changed.
Amen!
We don’t need to tell our pharmacist that insulin is expensive. When we pick it up, they usually preface it with “Are you aware of the copay amount?” Or at least they used to. Now we are using a discount program from Novolog that brought the 90-day copay from $200 to $75 – a huge difference. It’s only good for 2 years though. After that who knows that will happen. And we have GOOD insurance.
Polina, I know mine also apologizes to me when I pick mine up. But I always make a point of saying it if they do not bring it up. I do not hold them responsible, but I regard it as raising awareness. Besides if I forgot to say anything they might think I was ill.
What a fantastic post, Rick, and something I hadn’t thought too much about before. Thank you so much for sharing and for these wonderful tips.
Thank you for the kind words. It was an honor to attend the insulin summit on behalf of the entire community.
Rick, I completely agree with you! I don’t think insulin pricing has received the attention it deserves until recently, but it does look like it’s gaining traction. Even if we are in privileged positions, I think we have a duty to speak out.
I agree with you, Frank. We have a chance to improve the lives of so many if we can improve the cost of access.
I like that you have some really practical ideas here. Sometimes even when we DO talk about these things, we fall into the trap of not actually doing something about them. Thanks for sharing your thoughts.
I do think that we are stronger when we discuss things.
Indeed! Looking forward to keeping that connection.
For my 2 cents worth HIPPA was a disturbing action when it instituted. While it strengthened privacy it undermined community. The inadvertent result was that people around the U.S. no longer shared with each other even about who was or wasn’t a good doctor… (think of elevator rides after 911 and how everyone chatted with you for almost 6 months, then most went back to standing silently).
Added to that there is a perception especially among newer patients and caregivers that the stories of the past don’t apply to them, even though statistically Diabetes is still a number one killer. The D community is a valuable source of information and if we’re brave enough to listen… really listen… we find so much it makes us gentle, and humble, educated and equipped for the path we walk. Talking to each other and sharing or listening is a gift that hasn’t been truly appreciated or utilized and we can change that in profound ways.
Betsy, I wonder if you have participated in the Indianapolis Adult D Facebook group? We have a nice little group of locals.
I haven’t but will go out and find it to join!
Love to have you, Betsy, we are a fun little group.
Great summary Rick, thanks for the info. I always find it interesting the lack of apparent allegiance to the patient who keeps them afloat. I am an Eli Lilly 1.6 million dollar baby. I’ve changed the way I’m teaching people about Diabetes management to lower insulin dosing as much as possible while building health. People are dying due to accessibility issues and shareholder greed IS an issue. Accountability is also important as well as not placing the customer in the position of responsibility for it. I’ve been on insulin since 1965. The prices started elevating rapidly when original insulin patents preventing profit expired and cheaper synthesized insulin was created. For me that was about 1980 like you reference in your blog. http://www.diabetesactivist.com.
I am very glad to connect. I hope the link will drive some additional traffic to your site.
Rick, your post is the first I’ve read on insulin affordability that points to more than one bad guy! And gives advice on what people can do!!! You are so right! About all of it! This is a great post!!!
Thank you for the very kind comment. You might also enjoy an interview that was published On May 23, 2017 with Diabetes Mine.
I had no idea insulin was so extortionate in the USA. This will surely mean that diabetics who need it will delay going on it. They will also have less money for good food. Fortunately we have the NHS in the UK and although our tax is very high, we don’t pay for our prescriptions in Scotland.
It is difficult for many people in our community. What is often missed is that while the cost of insulin is growing, so is the prevalence of High Deductible health plans. It is not uncommon today for people to have a $10,000 or more annual deductible. Meaning that people bear the entire cost of health care up to $10,000 annually. This is devastating for people with a chronic condition. Since these costs are not always tax deductible, they pay federal and state tax on income used for health care when in the past this was essentially tax-free since health benefits are not taxed.
The bottom line is that if you have a chronic condition in the US it is getting more and more difficult to sustain a basic standard of living. So items like insulin which is lifesaving becomes more of a concern.
Did they have to pay you to attend? Maybe this is why medicine is so high.
I did not receive compensation for my participation. The company did pay for a two-night stay and three meals for me to attend. I feel we must engage with medication manufacturers in order to help them hear the concerns of our community. I was honored to be asked to attend as a person who has had Type 1 diabetes for 43+ years.
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Ivan:
I have received many comments along the same general theme of how do you get a pharma company to give you a trip.
Before I explain why I tegmfusr to post any of your comments let me answer the question you have posted at least 4 times.
The qualifications for working with a pharma company are pretty straight forward. Write an informative blog, advocate for people in your community, develop a strong readership, invest in building your audience and interact in the larger community.
Then when you do attend be prepared to work long hours.
You may wonder why I am not posting this or any of your other comments, nor will I post them in the future unless you update your posting information. I have a strict policy of not posting comments received from out of date or false emails. The email you provide on your numerous responses is not valid. As the operator of the site it is totally within my perogrative to post comments or not. If you wish your comments posted start with a valid email address. I will see how things develop from there. However given the tone and tenor of your repeated notes I do not hold out much hope for further interaction.