Water, Insulin, and Lies: An Explanation of What Insulin Truly Costs

Let’s talk about a couple of life-saving liquids for a moment: water and insulin.

Water is a clear liquid that quenches thirst and hydrates. It is essential for human life and costs $1.69 per one liter.

Insulin is a clear liquid that manages blood sugar levels. It is also essential for human life, but it costs $300 per 10 milliliters.

That’s outrageous on its own (and its something I’ve written about before, and will continue to write about, until insulin is affordable and accessible to all).

But what’s even more bewilderingly egregious is the fact that on September 29, 2020, the President of the United States of America lied about his actions (or shall I say, inactions) taken to lower the cost of insulin during the first presidential debate.

My jaw dropped when I heard him boast that he’s reduced insulin prices 80-90% and that it’s “like water” for people with diabetes now.

There are so many things completely and utterly wrong with that statement that it’s almost impossible to cover them all, but let’s start with the bill I paid for my last 90-day supply of insulin. I forked over $200. If I was uninsured, I would’ve had to pay $1,236.15.

I don’t know any water in the universe that costs $200, let alone $1,236.15.

The title of this blog post could be a book title…in fact, I bet there are people who really could devote entire books to this subject. Rightfully so.

I’m not going to mince words here: Under our current President, the cost of insulin has not lowered. And if you think I’m exaggerating his lack of delivery on his promise to do so, then please read the following from my friends at T1International regarding executive orders that were released in July (if you don’t have time to read the entire thing, please read the first paragraph):

On July 24th*, President Trump released four executive orders intended to lower drug prices, including two targeted directly at lowering the cost of insulin for patients who rely on it. Despite his assertion that these orders are intended to “completely restructure the prescription drug market,” these orders will not do anything to fix the underlying cause of the insulin crisis in America. Patients will still need to wait months for the rulemaking process to run its course, and likely even longer after that if these orders end up in court. While T1International is glad that the administration has stated that making insulin more affordable is a priority, these orders miss the mark. We don’t need incremental bureaucratic steps as an election approaches – we need transformative change that will make our medicine more affordable now.

The two orders that are most relevant to the lives of people with diabetes are the order that requires federally qualified health centers (FQHCs) to allow patients to purchase insulin directly from the FQHC at a steeply discounted price, and the order that builds on the plan released by the Department of Health and Human Services to allow for the importation of drugs such as insulin from Canadian manufacturers. Neither order would hold Eli Lilly, Sanofi, and Novo Nordisk accountable for their price gouging, nor would they do anything to reduce the list price of insulin, which has soared by well over 100% since 2012.

As previously noted on T1International’s blog, getting insulin through a 340B pharmacy can help patients to afford this life-sustaining medication. On the surface, President Trump’s order to make it easier for patients to purchase insulin through an FQHC seems helpful. However, his executive order ignores that FQHCs were never the problem with the 340B program in the first place. It is hospitals that are most responsible for taking the discounts offered by the 340B program, and they use those discounts to generate profits, rather than serve patients.

Similarly, #insulin4all advocates know better than most that the insulin they need, which costs hundreds of dollars per vial in the United States, is more affordable just across the border in Canada. However, the Canadian government has already made clear that they are not interested in exporting Canada’s supply of medicine en masse to the United States just because the U.S. government refuses to confront Big Pharma and lower drug prices for the exact same medicine, rendering this policy ineffective on a broad scale.

99 years ago today, Frederick Banting and Charles Best first isolated insulin, which would soon make it possible for people with diabetes to manage their condition. But since then, unchecked corporate greed has put this life-saving medication out of reach for too many people. President Trump was correct in diagnosing the problem and its solution before he even took office when he said that pharmaceutical corporations are “getting away with murder.” Since then, he has considered every policy option available to bring drug prices down except for the most obvious: action that will reduce medication list prices for everyone, including people without insurance. If the president really wants to lower the price of insulin and address the crisis of high drug prices, he already knows the solution; the question is whether he has the political courage to pursue it.

*On September 13, President Trump released a new executive order that would implement a “most favored nation” price for drugs under Medicare Part B and Part D. Patients need relief from predatory insulin prices now, but the President’s executive order won’t deliver. While this Executive Order could dramatically lower insulin costs for some senior citizens if it goes into effect, that could take months or years if it ever happens at all — and patients don’t have that kind of time to wait for change. Rather than make announcements he can tout on the campaign trail, the President should use his existing authority under federal law to bring down the price of insulin immediately.

T1International Statement on Executive Orders, updated September 14, 2020

Frederick Banting said it all when he remarked: “Insulin does not belong to me, it belongs to the world.” And that is a sentiment that I will be taking with me when I go to vote this November.

An Insulin Resolution is Necessary

This post was originally published on the T1International website on June 29, 2020, and was written by Cyrine Farhat. She discusses her participation in the WHA virtual forum on Access to Insulin and how she used it as an opportunity to voice her concerns about barriers to insulin access in her country (Lebanon) and around the world.

An Insulin Resolution is Necessary for Lebanon and the World

Diabetes has been on the global agenda in some form ever since World Diabetes Day was created in 1991,which is also the year I was born. It took 15 years to put diabetes on the United Nations agenda after that, to tackle the urgent need to pursue multilateral efforts to promote and improve human health, and provide access to treatment and health-care education. Fast forward another nine years to 2015 when the 2030 agenda was launched and the Sustainable Development Goals (SDGs) were adopted. Despite all of that, we are now in 2020, talking about access to insulin when we should have already made it widely available and affordable to all pillars of society.

Sadly, my country and many others are still facing many challenges with insulin access and affordability. Lebanon’s recent financial crisis has caused a dollar shortage that, since September, has restricted the ability of medical supply importers to import vital medical supplies. First it started with masks, gloves, and other protective gear, as well as ventilators and spare parts, and now even essential diabetes supplies are sometimes unavailable. The government has also not reimbursed public and private hospitals for bills, which has made it harder for diabetics to purchase their medication and other diabetes-related medical supplies. For example, Novorapid insulin has been hard to find at pharmacies over the past two weeks.

I had the honour to participate in the WHA virtual forum on Access to Insulin and to address all my concerns as a patient advocate from Lebanon. The aim of the virtual forum was to facilitate a wide discussion between a group of experts and advocates on this issue. The crucial problem is that almost a 100 years after the breakthrough that has saved millions of lives worldwide – the discovery of insulin – many people still cannot access or afford it.

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Patients like Cyrine have the power to change the world.

The fact that I was able to voice my concerns as a person with type 1 diabetes among the panellists that the forum included was very empowering. The panel included Zachariah Muriuki, Project Manager – National Diabetes Prevention and Control Program at Ministry of Health, Kenya; Dr. Kaushik Ramaiya, Consultant Physician and Chief Executive Officer at Shree Hindu Mandal Hospital, Dar es Salaam, Tanzania; Greg Perry, Assistant Director General, IFMPA; and Emer Cooke Director, Regulation of Medicines and other Health Technologies, World Health Organization.

The forum started by showing a video that displayed testimonials from people living with type 1 diabetes around the world, including the barriers they face in regards to access to insulin, and responses from health care providers. Although I’ve personally lived with diabetes for almost 13 years and have dealt with so many obstacles, it still breaks my heart when I see what people with diabetes worldwide have to go through in order to get insulin and remain alive.

When asked during the forum about the barriers that the Lebanese have been facing with access to insulin and how the government needs to address these concerns, I depicted the current economic situation in Lebanon. The government is absent, especially after the revolution that spiked in October 2019 and left behind a collapsing economy. With hyper-inflation skyrocketing at 240% and the Lebanese Lira collapsing, the government has decided to remove the subsidy from bread and combustibles. The Central Bank has set their own policies restricting depositors’ access to funds in their current dollar accounts and the transfer of money abroad, making it harder to finance imports, including of medical equipment and medicine. These issues can put people living with diabetes in a very dangerous position. With no substitute to imported insulin, and the decline in purchasing power due to inflation, how will Lebanese people be able to afford their medication?

I shared that I believe in the upcoming months we will be left with an insulin crisis once the subsidy is also removed from medication. Patient advocates in Lebanon have been trying to reach out to the government, to no avail. The only thing we can do is to continue to raise our voice until we are heard.

In another question, I was asked what it meant to have the World Health Organization (WHO) and their Member States recognize and prioritize access to insulin, and how people living with diabetes and the global community can take this issue forward. I said that once the international community admits and perceives “insulin as a human right”, the entire scope of advocacy for access to insulin would have solid foundations and would shift from voicing about lack of access to actually forcing governments to comply. As advocates, we must seek accountability from governments regarding progress on WHA targets and address hurdles and bottlenecks in the process. Governments should also set state-level targets, and develop a strong participatory monitoring framework and management information system to measure outcomes of targets under SDGs and WHA.

The panel discussed other matters such as steps that have been carried out in Kenya to enhance access to insulin, how Tanzania has also worked towards improving access and the recommendations it provides to other countries, and how the WHO is committed to improving equitable access to insulin. It was concluded that the WHA resolution on insulin needs to be comprehensive in the requests to governments and to the WHO on actions they should take. Here, civil society, governments, and WHO need to define key requests and alight goals that serve making insulin accessible.

As a Global Advocate for T1International, I will continue to push for change in any way possible. Insulin is life support and no person should have to decide between putting food on the table or affording insulin. I truly believe that we are capable of creating change. The right of access to insulin is mine, yours, and the world’s. If it is our right, then we will not stop until we get it!

Have You Signed the Type 1 Diabetes Access Charter?

On Wednesday afternoon, I signed a charter intended to bolster worldwide diabetes advocacy. The charter was launched by T1International and I’m sharing it here with you to encourage you to sign it, too. Here’s some more information on it, pulled directly from the T1International website:

Around the globe today, people with type 1 diabetes are dying because they cannot afford or get ahold of insulin, supplies, education and treatment.

To survive and live a full life, everyone with type 1 diabetes has the right to the following:

1. The right to insulin
Everyone should have enough affordable insulin and syringes.

2. The right to manage your blood sugar
Everyone should be able to test their blood sugar levels regularly.

3. The right to diabetes education
Everyone should be able to understand their condition, including adjusting insulin dosages and diet.

4. The right to healthcare
Everyone should have hospital care in the case of emergencies and ongoing specialist care from a professional who understands type 1 diabetes.

5. The right to live a life free from discrimination
No one should be subject to any form of discrimination or prejudice because they have type 1 diabetes.

In addition to magnifying diabetes advocacy efforts globally, the charter is also used to influence the actions of governments and organizations so that policies can be changed and the rights of people with type 1 diabetes can be prioritized.

It took me fewer than 30 seconds to sign the charter, and I put this blog post together in under 10 minutes. Join me by signing and spreading the word about it to help people living with type 1 diabetes have access to vital insulin, supplies, healthcare, education, and freedom that are necessary in order to survive and live full lives.

Do You Know How Shareholders Benefit from Insulin Price Increases?

This post was originally published on the T1International website on May 6, 2020, and was written by Rosie Collington. I am sharing it on Hugging the Cactus because to be quite frank, I never understood the many issues surrounding insulin price increases. After reading this post, I had an “aha!” moment as I finally began to understand how the profits from insulin price increases are distributed. It’s an important issue to understand: with increased awareness comes an increased drive to make change.

Patients living with type 1 diabetes have known for years that the list price of insulin in the United States has soared. They’ve paid the price – in insurance premiums, in upfront costs, and also, tragically, in some cases with their health.

But until recently, it has been difficult to prove just how much the list price of insulin has increased, and what proportion of the higher costs for patients have gone to the three main insulin manufacturers – Eli Lilly, Novo Nordisk, and Sanofi – versus other companies in the US prescription drugs supply chain, like insurance companies, pharmacies, and pharmacy benefits managers. Information about pricing negotiations is considered a trade secret, meaning that the actual data is difficult to access. Instead, researchers and patient groups have had to more or less rely on guesswork to estimate the value of price increases, or the highly selective data published by the companies themselves, which do not paint the full picture.

The lobby group representing pharmaceutical companies in the United States, PhRMA, has suggested that pharmacy benefits managers (PBMs) have been the primary beneficiaries of the sharp list price increases of many prescription medicines in recent years. The American Diabetes Association’s Insulin Access and Affordability Working Group similarly reproduced selective data released by the three insulin manufacturers on the differences between the list and net prices – the amount the manufacturer receives – of a few insulin medicines, suggesting that the additional profits accrued by the manufacturers was low relative to intermediaries like PBMs.

 

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But in March of this year, researchers at the University of Pittsburgh provided evidence that the net price of insulin medicines in the United States had also soared – by 51% between 2008-2017. This indicates that while other intermediaries had benefited from list price increases, the manufacturers had too. This may seem obvious, but having data to prove it is important.

For my research with Bill Lazonick, funded by the Institute for New Economic Thinking, it has been key to mapping how the profits from higher insulin sales revenues have been distributed. We wanted to find out whether insulin list price increases in the United States had contributed to higher research and development (R&D) investment by the companies, as they so often claim is the case. What we discovered was that as the list price of insulin has increased in the past decade, the ratio of spending on R&D relative to what the companies distributed to shareholders had actually decreased. While over the period of 10 years, the companies spent $131 billion directly on R&D, crucially we found that during the same period, the companies had distributed $122 billion to shareholders in the form of cash dividends and share buybacks.

Cash dividends are the means used by all publicly listed companies to distribute money to shareholders as a reward for holding shares. Share buybacks work quite differently – companies can buy their own shares from the market, which inflates the value of existing shares on the market. Share repurchasing can also benefit company ‘insiders’, like executives, who often receive pay in shares, because they can decide to time when they sell their shares to get the most value. This is not technically illegal, though it was once upon a time. In the last year, some lawmakers in the United States, including Bernie Sanders and Elizabeth Warren, have called for stock buybacks to be banned.

Fundamentally, the system should not have permitted shareholders to profit in this way as diabetes patients were struggling to access their life-saving prescription medicine. As coronavirus continues to spread around the world, the pharmaceutical industry is facing more scrutiny than ever before of its financing and drug development processes. By understanding how value is extracted by shareholders in the pharmaceutical industry, and what relationship this has to patient access, we can, hopefully, create a better system.

Why I Decided to Become a Digital Advocate for T1International

When I started Hugging the Cactus, I knew I wanted to do more with it than just use it as a platform to share my diabetes story.

I also wanted to make change.

I wanted to do more for my diabetes community.

I wanted to become the best advocate that I could possibly be.

But for a long time, I was stuck on how exactly to go about doing that.

During this time in quarantine, I’ve been able to spend more time thinking and researching ways that I could get more involved.

And that’s what lead me to T1International.

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#insulin4all means FOR ALL.

As I mentioned in a blog post earlier this month, I’ve sort of known about T1International for a long time now. I knew that they were the organization behind the well-known hashtag #insulin4all, but I was curious to learn more about them and their mission.

As I discovered, T1International works to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all. They have a plethora of materials and information on their website that helps those who are interested become well-versed in this issues surrounding insulin and diabetes supply accessibility. In addition, the T1International team keeps site visitors up-to-date with their blog that contains articles on everything from global stories to legislation explanations.

It wasn’t long before I realized I wanted to work with T1International. So I reached out to their team and applied to become a digital advocate, and less than one week later, I completed my orientation. It’s official: I’m a proud T1International digital advocate.

This is meaningful to me because now I feel more empowered to advocate about the issues that matter, such as the #insulin4all movement. This movement is so important because access to insulin, no matter who you are, where you’re from, or what type of diabetes you have, is critical to the health of all individuals who rely on insulin to live.

Before I dive more into the insulin crisis, let me first acknowledge that I am extraordinarily lucky and privileged: Insulin affordability has never been a personal issue for me. Sure, I’ve had to pay way more out of pocket than I’d like to in order to cover the cost of insulin, but I’ve never had to make the impossible choice between paying for a month’s supply of insulin OR paying for monthly rent.

Many people have had to make that sort of choice, though. And that’s simply not okay.

Whether you’re familiar or unfamiliar with the current insulin crisis, consider the following facts (provided by T1International):

  • Since the 1990s, the cost of insulin has increased over 1,200%, yet the cost of production for a vial of analog insulin is between $3.69 and $6.16.
  • Spending by patients with type 1 diabetes on insulin nearly doubled from 2012 to 2016, increasing from $2900 to $5700.
  • A study of rising drug prices over the decade ending in 2018 found that list prices of insulins increased by 262%, with net prices increasing by 51%.
  • One of every four patients with type 1 diabetes has had to ration their insulin due to cost. Many have died.

These statistics are more than alarming. They’re downright disgraceful, unjust, and have forced patients to resort to drastic measures to stay alive.

Change needs to happen.

This is why I’m humbled, fired up, outraged, and beyond ready to join the T1International digital advocates team and become one more voice who helps to make the issues regarding insulin access and affordability heard.

27 Acts of Kindness: Days 24 and 25

It is officially the month of May! Say what?!

This means that I’m rapidly approaching the last few days of my acts of kindness challenge…though I certainly do have some ideas on how to keep the positive vibes going in the near future.

Speaking of, I think that Wednesday’s act of kindness will definitely help me make that happen…

Wednesday, 4/29 – Act of Kindness #24: So this one’s really special to me. For months now, I’ve expressed to many people how I want to become a better diabetes advocate. Sure, I have this blog and it’s one form of raising diabetes awareness, but I want to do more. I started looking into some options on Wednesday and it brought me to the T1International website. I’ve had a vague awareness of T1International and their work for some time now – that website is where I purchased my awesome #Insulin4All sweatshirt – but I wanted to understand what they do to a greater extent.

Turns out, they have a pretty awesome mission: T1International works to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all.

After clicking around their website some more, I found out that they are seeking digital advocates who can help spread the word about their organization and its goals…so I decided to sign up to become a digital advocate for T1International and I couldn’t be more thrilled about it.

I’m learning more about what I will specifically be doing this weekend, but as for now, I’m just excited about the chance to advocate for a cause that I’m very passionate about, which is access to insulin for all. Because like it says on the T1International website, life with diabetes is complicated enough…nobody should have to worry about access to vital insulin, diabetes supplies, or medical care on top of it.

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Water and insulin are two very important liquids that not all people have access to…and that’s not okay.

Thursday, 4/30 – Act of Kindness #25: You know what else everyone should have access to, but unfortunately, many people in the world do not? Clean water.

Access to clean drinking water is absolutely something that I take for granted…and it’s simply unfathomable to me that 785 million people – which is to say, 1 in 9 – lack access to safe water. How wild is that? Water is crucial to so many aspects of life, and there isn’t one single human on this planet that can survive without it.

So after a conversation with my mom yesterday about causes that are near and dear to our hearts, in which she reminded me that for years now she’s been hoping to build a water well in a place that it’s greatly needed, I donated to water.org. Talking with my mom and hearing the dedication in her voice made me want to do what I could to help her support a cause that means a lot to her, so I happily made the donation in her name and even got to send her an eCard notifying her of it. Hopefully, it makes her smile and reminds her that she does have the ability to get that well built one day because those closest to her will support her every step of the way.

Whether it’s insulin, water, food, shelter…there are simple basic needs that all human beings deserve to have access to, and its an injustice that they don’t. Fortunately, there are amazing organizations out there like T1International and Water.org that work tirelessly to change this, and it’s humbling to be able to support them in any capacity. I linked to their websites in this post – hover over their names above – I encourage you to check them out and consider the ways you might be able to help them, too.

 

3 Things I Want the World to Know About Insulin

See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?

Can you believe that, at approximately $9,400 per gallon, insulin is ranked as the sixth most expensive liquid in the world?

It’s kind of crazy, right? But besides knowing that insulin is priced outrageously, there’s actually a few other things that I think the world should know about insulin.

Ethan Zohn_ A Survivor Contestant Who Inspires-2

  1. Not all insulin is created equal. Just like diabetes, insulin exists in various forms. Besides liquid insulin, there’s also inhaled insulin (Afrezza). And some people with diabetes may even take oral medications that are designed to help increase the effectiveness of insulin that they either receive via injection or produce on their own. There’s brand-name insulin produced by several drug manufacturers (the big three being Eli Lilly, Novo Nordisk, and Sanofi) as well as generic versions of the drug…but that doesn’t mean that generic insulin works just the same as brand-name insulin for all people with diabetes. Insulin is complicated and different types work better for different people.
  2. Insulin is incredibly sensitive. Take one look at the vial in the above photo and tell me that the insulin inside it is safe at all times. Nope, it sure isn’t! Besides the packaging being super fragile, people who rely on insulin must also be careful to keep it at the proper temperature at all times. All it takes is dropping the vial once or leaving it in an unstable environment for the insulin to be rendered useless, potentially wasting a few hundred dollars. It’s as volatile as it sounds.’
  3. Taking too much or too little insulin is dangerous and life-threatening. For some people, there can literally be a life-or-death difference between one unit of insulin. Too much can cause blood sugar to plummet and a person can experience severe hypoglycemia that may result in shock. Too little insulin has the opposite effect: A person will experience hyperglycemia that can have ranging consequences, some that are minimal/temporary, others that are very serious. That’s why precision is so important when dosing for insulin; on top of that, nobody wants to waste a single drop of the stuff because it is so expensive. But this is what many people with diabetes need in order to survive.

So when you see the hashtag #Insulin4All or hear someone talking about how overpriced it is, you’ll know some of the basic characteristics about insulin that make it invaluable to people with diabetes. Perhaps you’ll be inspired to join the fight to make insulin affordable and available to all – as it should’ve been to begin with.

Why Waiting for Prescription Refills Feels Like a Pending Punishment

I’ve been waiting.

I’m waiting, impatiently, to learn just how much I’m going to have to pay for a 90 day supply of insulin.

I’ve been waiting for what will inevitably feel like a punishment.

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It’ll feel like a punishment because it will feel harsh and unavoidable. And it’ll be more intense than is fair because my only offense is having a pancreas that doesn’t work the way that it should.

Every time I log into the Express Scripts website, I feel a sense of dread sweep my body. I anxiously click around the portal until I get to the recent order screen (see above image). My eyes immediately flock to the blue box that will eventually display how much money I owe for my insulin.

It’s a process that reminds me of checking my grades when I was in college: After I took an exam, I’d enter my username and password into the student portal to find out whether grades were posted. I’d repeat this process multiple times a day until I found out how I scored. It was a nerve-wracking routine back then, but I wish I could tell my younger self that that was NOTHING compared to looking up the cost of my insulin.

 

The $2,000 Mistake

Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.