How Insulin Rebates Work

This content originally appeared on Beyond Type 1. Republished with permission.

By Lala Jackson

A major contributor to high insulin list prices that is often misunderstood – because it is designed to be complex and opaque – is the Pharmacy Benefit Manager (PBM) and rebate system. Rebates are a percentage of the list price of a medication, given by a drug manufacturer to a Pharmacy Benefit Manager (PBM), in order to be listed on the health insurance plan formulary or placed in a pharmacy.

Essentially, rebates function a bit like a “broker’s fee” of sorts and can account for 30-70% of the cost a person has to pay at the counter for insulin if they don’t have insurance, or if they are paying the full cost of insulin until they hit their insurance deductible. The PBM takes a portion of the rebate as their own profit, then gives the remainder to their client, which can be the federal government (Medicare), an employer’s health plan, or a standalone health insurer.

Insulin manufacturers choose to participate in this system that drives list prices up because it benefits their business – by giving PBMs a large cut of their profits, their products get placed on insurance formularies more often, leading to more sales. This system creates up to 70% of the current list price of insulin in the US, and it doesn’t have to be this way.

Rebates – They Don’t Mean What They Sound Like

The math is infuriating, but here’s the heavily-simplified basics of how rebates work – if you made a product for $5 and wanted to sell it, you may set the price at $10, to create a $5 profit. With that $5 profit, you can invest back in your company to create better products, pay yourself – whatever you want to do with your $5.

But let’s say you want your product to be in more places and available to more people. You might hire a middle person to place your product in new stores across the country, and they’ll charge a fee, which is reasonable.

When you begin, their fee is $1. So that you can keep your $5 profit, you raise your price to $11. Still reasonable. But over time, your middle person makes themselves indispensable and knows it. You’re making way more money because of how many products you’re able to sell, so you’re not about to drop your middle person.

And oh oops – you also signed a contract with your middle person to ensure you’ll always get your product placed in these nation-wide stores, so you’re locked in. And part of that contract was a promise that you won’t lower your price, since that would impact your middle-person’s profit.

And oh oops – your middle person also has contracts with your competitors, and the contracts signed with those competitors make it so that if your competitor gives the middle person a little bit more of their profits, your middle person won’t sell your product in certain stores for a year. You can fix this by raising your own price to give the middle person more profits, so you can kick your competitor out of a store the next year.

So now, your product costs $50. It’s the same product – you’ve never improved it. Your customers are receiving no more value than when the product costs just $10. Over time, you wanted to make more money from it, so your profit is now $10.

It’s still $5 to make your product.

You get $10 profit, doubled from your original earnings.

And your middle person? They’re making $35, 70% of the list price, off a product they don’t make or even touch.

But you’re definitely not going to get rid of your middle person, because they’re the reason you’re able to sell so many products and make the money that you do.

For a regular product like a water bottle, no worries, your customer will just go somewhere else.

But what if your product was water, and your customer needed it to survive?

The Role of Pharmacy Benefit Managers (PBMS)

PBMs are third-party intermediaries who negotiate prices and drug placements on insurance formularies between pharmaceutical companies and insurance companies. Sometimes they are standalone companies, other times they are attached to national pharmacies or insurance companies.

For their negotiating services, they take a share of the profits from prescriptions. This share is known as ‘rebates.’ They also profit from “administrative fees” for each unit of drug sold, which can be up to 5% of the list price.

Speculated about for some time but difficult to prove because of private contracts (fully legal through the US system, which is notoriously bad at regulating drug pricing) is the sheer amount of cash being collected by PBMs. Originally created to help get needed drugs to patients more efficiently, PBMs have unfortunately become a key agitator to high out-of-pocket drug costs.

From a January 2021 Senate Finance Committee report, we now definitively know that “…drug manufacturers increased insulin WAC [wholesale cost], in part to give them room to offer larger rebates to PBM and health insurers, all in the hopes that their product would receive preferred formulary placement. This pricing strategy translated into higher sales volumes and revenue for manufacturers.”

The big legislative stumbling block we now face is just how reliant on PBMs the US healthcare system has become. In a more simple system, a pharmaceutical manufacturer could provide their medications to a pharmacy for direct disbursement to patients who require them. But in a system with a shaky foundation to start with and many players in the space, across private and public entities, the water gets significantly muddied.

To keep PBMs happy, ensuring they negotiate the placement of each manufacturer’s insulin on insurance formularies, rebates for insulins have increased exponentially, particularly since 2013.

In July 2013, Sanofi offered rebates between 2% and 4% for preferred placement on a formulary. The same product in 2018 provided a 56% rebate. That’s more than half of the out-of-pocket cost of insulin being handed to companies that don’t make the insulin.

This is one example, but every single insulin manufacturer does this. As the report states, “What is clear is that the money that flows through PBMs is nothing short of enormous. As discussed throughout this report, rebates have grown at a rapid pace in the insulin market in recent years, which is not true in all therapeutic markets.”

The Bigger the PBM, the Greater the Power

The three largest PBMs – CVS Caremark, Express Scripts, and Optum Rx – wield significant power in the market commanding large rebates. Lilly documents show that they offered a 22% rebate to a small PBM, but offered Optum Rx a 68% rebate for the same products in order to get placement in Medicare’s Part D prescription plan. As noted in the report, this robust ability to negotiate has led to “…some PBMs securing rebates as high as 70% in recent years.”

Manufacturer contracts with PBMs, previously confidential but exposed by the Senate Finance Committee report, are written in percentages. This means that it is to the PBMs’ benefit to encourage list price increases, making their portion of payout larger.

PBMs actively encourage manufacturers to raise the list price so that they may receive more money, and use threats of removing insulins from insurance formularies as leverage. The bundling of multiple products (increasing one product’s rebate amount to get other products included) is also a tactic used in PBM and manufacturer negotiations, especially in exclusivity contracts.

“As Eli Lilly explained to its investors in 2019, failing to secure formulary placement can “lead to reduced usage of the drug for the relevant patient population due to coverage restrictions such as prior authorization in formulary exclusions, or due to reimbursement limitations which result in higher consumer out-of-pocket cost, such as non-preferred co-pay tiers, increased co-insurance levels, and higher deductibles.”

The Bottom Line

The US healthcare system is deeply broken, and insulin pricing is one of the clearest examples that an unregulated drug pricing system motivated by profit will always put cash flow over patient lives. PBMs and the rebate system exacerbate the problem, but every participant within the system is at blame. Each entity has chosen profit over people.

Significant rebate reform and an overhaul or removal of the PBM system could slash the list price of insulin by up to 70% and would impact not just insulin, but many medications and devices that are subject to the rebate system. Robust federal healthcare reform could create a system where drug prices could be negotiated on a federal level, and current proposals like rolling back prices to more reasonable levels could be a step.

A deeply broken system requires layered solutions. Without a full overhaul, we risk fixing the insulin pricing issue with a bandaid, while driving up prices and limiting access to other life sustaining medications and life changing technology.

Substantial healthcare policy change takes the voice of many, and individual advocates make a resounding and impactful difference. If you are looking to get involved with diabetes access advocacy, start here. Reach out and get to know your state’s congressional representatives in the House and Senate. Make sure they know your personal experience and how issues of healthcare, drug pricing, and access impact you.

Source: diabetesdaily.com

CGMs to “Hack” Your Blood Sugar? People with Diabetes Speak Up

It’s becoming more and more common: whether in a coffee shop in Silicon Valley or in a weightlifting gym in Boulder, Colorado, people without diabetes are using continuous glucose monitors (CGMs) to “hack” their blood sugars, lose weight, and hone their diets accordingly. This article will explore the use of CGMs in the non-diabetic population, what the backlash from the diabetes community has been, and what the call to action should be.

CGMs for More Than Just Diabetes Management?

According to one website that promotes the use of CGMs in a non-diabetic population,

“ Wearing a CGM can facilitate the effort for someone who wants to hack their diet, blood sugar control, and overall health. This technology can go beyond a single blood sugar reading that a blood glucose meter provides. A CGM can provide real-time insight on whether blood sugar is trending up or down.”

What may seem like an innocuous accessory for the upper-class elite has many people with diabetes enraged. CGMs are crucial in providing regular, near-constant blood glucose readings to track time spent in range (TIR), identifying patterns in blood sugars, and anticipating both low and high levels.

The Original Purpose of a Continuous Glucose Monitor

For people with diabetes, they are life-saving, and more and more often are being coupled with insulin pumps that will then increase or suspend insulin according to the blood sugar that a CGM reads. It almost entirely eliminates the need for manual finger testing and has proven to help lower HbA1c levels, reduce dangerous low blood sugars, increase time in range, prevent unnecessary emergency room (ER) visits, and save the health care system money and save many lives. It has quickly become a necessity for tight diabetes management in recent years for many people.

For something so seemingly necessary for most people with diabetes, it clearly isn’t seen that way by industry: 16 states, including California (the most populous), do not have Medicaid coverage for continuous glucose monitors at all. And while most private health insurance plans (and even Medicare) now cover CGMs, affording one without health insurance is nearly impossible: the most popular CGM and the one that most commonly connects with insulin pumps, the Dexcom CGM, costs thousands of dollars out of pocket per month without insurance.

So when someone with diabetes, who is already struggling to afford their insulin, goes to the local coffee shop and overhears two dudes from Crossfit comparing their (perfect) blood sugar readings on their respective CGMs over their non-fat decaf lattes, the inequity of the situation can be enough to make your skin crawl.

Clair from Illinois says,

“The general population using CGM devices trivializes them.”

Cate from Nebraska adds,

“It absolutely incenses me [when non-diabetics use CGMs]. There’s a local doctor in my area who treats patients for weight loss and gives everyone a free CGM; meanwhile, it’s an arm and a leg to refill my own.”

Bonnie from Minneapolis says,

“It drives me absolutely bananas.”

We Are All Just Products of the System

Managing diabetes with a continuous glucose monitor is life-changing, but it is expensive, and living with diabetes in America is anything but easy. We have the most expensive insulin prices in the world, health insurance isn’t compulsory or cheap, and even when you do have a job that has health insurance, necessary diabetes technology is sometimes not even covered or affordable under your plan.

Seeing people use technology that we need can be seen as a slap in the face, but we’re directing our anger at the wrong place. The problem with accessibility in the United States is not a supply issue. The problem with accessibility in the United States is that we use health care as a commodity when it is not. We put health care into a capitalist box when it’s something that should be treated as the human right it is. We’ve priced people out of their lives. We treat things like insulin and insulin pumps and continuous glucose monitors as if they’re elastic goods when they’re 100% inelastic. We cannot negotiate our own pricing for insulin. We can’t haggle down the price or walk away. We need the drug or we die.

People without diabetes see products like continuous glucose monitors as the valuable goods they are and are willing to pay for them. No person who uses a CGM recreationally has it covered by their insurance, and it’s important to remember that.

It’s not a zero-sum game where someone’s CGM that’s paid for out of pocket in San Francisco precludes another person on Maine’s Medicaid program from accessing one of their own, but it feels like it does. Instead of taking our anger out on the gym-rat in Colorado who’s paying thousands of dollars out of pocket for their Dexcom each month (which is stupid, but why question their motives?), we should be angry at the government and systems that created this situation to begin with.

If the United States had a single-payer health care system where everyone who lives here had health coverage, we wouldn’t care what people buy on the free market. If all plans (including Medicaid!) covered CGM use for people with diabetes at 100% of the cost, it wouldn’t bother us what anyone else was doing with their blood sugar levels (diabetic or not). It’s a symptom of a system that denies people with diabetes the proper care and regular, reliable access to proper durable medical equipment that makes them covet these devices as much as we do. There’s nothing inherently wrong with people without diabetes using CGMs, but it does sure feel like there should be. 

CGM for non-diabetic population

Photo credit: iStock

Some People Support Wider Use of CGMs

In speaking with others for this story, I found several people who encourage non-diabetics to use CGMs, like Mindy, a registered dietician from Colorado,

“I am pleased that there is adequate supply for people without diabetes who can view the real-time movements and fluctuations of blood glucose. The more understanding there is in groups of non-DMs, maybe we can finally change the direction of people diagnosed with (type 2) in the future.”

Christie, from California, added,

“being mad about someone having a CGM that they bought on the free-market is similar to someone with hypertension being angry over another person having an at-home blood pressure monitor. It just doesn’t compute.”

In a country with nearly 100 million people living with prediabetes, learning to respond to blood sugar trends and figuring out which foods work best for your body can only be a good thing. And although it hasn’t happened yet, the more “mainstream” these devices become, the more affordable they’re bound to become, which would be great for everyone. Additionally, for shy diabetics, CGMs becoming more mainstream can also take away the stigma of having a visible device on your body 24/7. It’s suddenly “cool”.

Benefits for Everyone

Whether or not you have diabetes, a continuous glucose monitor can help with several things:

  • Learning how your body responds to certain foods (grapes versus crackers, for instance)
  • Identifying blood sugar patterns around mealtime and exercise
  • Diagnosing diabetes before the onset of ketoacidosis (DKA) in people at high risk (people who are overweight, obese, live with prediabetes, or who have the antibodies for type 1 diabetes)
  • Improving blood sugar to help maximize energy for a workouts
  • Helping people lose weight by managing their hunger (which is the result of fewer blood sugar fluctuations throughout the day)

In a country where over 70 million adults are obese and another 99 million are overweight, having more data regarding how our bodies respond to the foods we eat is vital. We have a type 2 diabetes epidemic on our hands that is only getting worse, and wider CGM usage may help curb that, but people need to be careful.

Using them as “wellness gimmicks” may bombard those who truly do not understand the relationship between glucose and blood sugars, leaving users overwhelmed with data and confused, while not making any dietary changes at all. In a true market economy, the greater the demand, the more competition will spring up, the more prices will fall (for both people with and without diabetes).

The real issue that people need to focus on is making sure that everyone with diabetes who wants a CGM can get one, but people without diabetes accessing CGMs on the open market will not prevent that from happening. We need to push for greater coverage for CGMs on the private and public health insurance market with our elected officials and make sure that we inch ever closer to the illustrious universal health care system that other industrialized countries enjoy. We need to make sure that everyone with diabetes has access to affordable insulin, pumps, and supplies (including CGMs), with strong grassroots advocacy to equip people with all the tools they need to thrive. If we achieve universal health care maybe someday everyone who truly needs a CGM can get one, but until then, let the Crossfit bro with his Dexcom sensor alone. Although you can let him know that the caffeine in his latte will raise his blood sugar a few points in the meantime.

Source: diabetesdaily.com

Has President Biden Just Canceled Affordable Insulin?

President Biden, a long-time champion of both expanded access to healthcare and affordable prescription drugs, just froze a move made by the Trump administration late in his term aimed at reducing the cost of insulin. This has some advocates fearing that Biden essentially “canceled” affordable insulin in his first week in office. So, what’s going on?

In fact, President Biden did indeed freeze a plan that was promoted by the Trump administration to lower the cost of insulin. But it’s not what you think.

Last week, the Biden administration announced a regulatory freeze pending review on all new regulations and Executive Orders (EOs) signed by President Trump during the final days of his term, including new regulations that had not yet gone into effect. The freeze will last 60 days until the Biden team can review them more thoroughly.

President Trump had signed an EO last year claiming to make insulin more affordable, that would force community health centers, including Federally Qualified Health Centers (FQHCs) to pass along 340B Program federal discounts on insulin to patients who qualify under the program. The rule was finalized in December 2020.

This would have essentially made insulin-free for low-income patients who qualify, instead of between $1-5 dollars per vial that they have traditionally paid at these health centers for their insulin. The rule was supposed to go into effect on January 22 but has now been delayed until March 22nd.

President Trump claimed that the rule change would make insulin more affordable for the 28 million Americans who frequent FQHCs for their health care, but a Health and Human Services statement admitted that “the economic impact is expected to be minimal” because the majority of patients who get insulin from these 340B participating health centers already get discounted insulin. In some cases, patients receive a 30-day supply of insulin for just $7, according to the report published in the Federal Register.

There is some speculation that enacting President Trump’s Executive Order would cause some Federally Qualified Health Centers to go out of business, which would be truly detrimental to the populations they serve during a pandemic, and the Biden administration just wants time to review all EOs and assess their potential consequences before taking further action.

In short, the 60-day regulatory freeze is not causing the price of insulin to increase, and it is not preventing action in the future to make sure that insulin is available and affordable for all Americans who need it. Additionally, there is no evidence that the Executive Order would have actually lowered insulin costs in a substantial way for the majority of people who require the hormone to live.

While President Trump’s Executive Order may have caused a media firestorm last year, it in no way paved the way for more affordable insulin for the 7.4 million Americans who rely on daily insulin injections to live, and President Biden freezing Trump’s EO in no way raises the cost of insulin, either.

Only time will tell what steps will be taken at the federal level to assure more affordable insulin for all Americans who need it to survive. Time is of the essence, and we’re running out of it.

What steps do you think the new Biden administration needs to take to address the rising cost of insulin in the United States? Share your ideas below!

Source: diabetesdaily.com

$35 Insulin on Medicare Pilot: Is This the Beginning of Affordable Insulin for All?

On Tuesday, President Trump held a press conference announcing a new pilot program for seniors on Medicare that would cap the monthly co-payments of insulin to $35. The announcement was attended by senior executives of two main insulin manufacturers, Eli Lilly and Novo Nordisk, and staff from the American Diabetes Association, as well as the Surgeon General, Jerome Adams.

In typical Trump style, midway through his announcement, he proclaimed, “I don’t use insulin. Should I be? Huh? I never thought about it, but I know a lot of people are very badly affected.” While this comment has created a wave of groans and eye-rolls throughout the diabetes online community, the core of his message is more important: seniors in America will now be more able to comfortably afford their insulin.

For everyone on earth, insulin is a necessary hormone to live. People without diabetes produce insulin endogenously, whereas people with diabetes must take insulin exogenously. Without adequate access to affordable insulin, people with diabetes face serious complications, such as kidney failure, blindness, amputations, and premature death. Unfortunately, the rising costs of insulin over the past few decades have become a major barrier to appropriate management of diabetes. American seniors are some of the hardest hit by the rising costs, who are partially-retired or out of the workforce completely, often trying to survive on smaller, fixed-incomes.

Trump remarked, “Today I’m proud to announce that we have reached a breakthrough agreement to dramatically slash the out-of-pocket cost of insulin. You know what’s happened to insulin over the years, right? Through the roof.”

The pilot program will take effect starting in 2021, and would be part of the enhanced Medicare Part D Senior Savings Model, to which over 1,750 standalone Medicare Part D and Medicare Advantage plans have applied to participate in, according to the Centers for Medicare and Medicaid Services (CMS).

s$35 Insulin on Medicare Pilot

Photo credit: Adobe Stock

This is a welcome respite from the high cost of insulin for American seniors on Medicare, who, despite being covered by health insurance, sometimes have to pay hundreds if not thousands of dollars for their monthly insulin prescriptions.

Despite the multitude of executive orders and policy decisions the Administration has made to chip away the Affordable Care Act, this enhancement of American’s largest healthcare social safety net was met with applause from seniors all across America, many of whom have cooled their support of the President since the beginning of the COVID-19 pandemic and our nation’s response to it. This is an excellent first step to ensuring that our aging Americans can afford the insulin they need to take care of themselves.

It is estimated that Medicare beneficiaries (generally Americans over the age of 65) who use insulin and join a plan participating in this pilot could see average savings of $446, or 66% for their insulin every year. The pilot is funded in part by insulin manufacturers who will pay $250 million in discounts over the five years of the pilot. There has been a positive response from Medicare Part D plans nationwide, and CMS predicts coverage in the pilot will be available in all 50 states, D.C., and Puerto Rico. Medicare beneficiaries will be able to enroll in a pilot-participating plan during traditional Medicare open enrollment, which is October 15th-December 7th, 2020, for Part D coverage that begins on January 1, 2021.

1 in 3 Medicare beneficiaries has diabetes, and over 3.3 million Medicare beneficiaries use one or more types of insulin, so this change isn’t insignificant. Out-of-pocket spending on insulin by seniors in Medicare Part D quadrupled between 2007 and 2016, from $236 million to $968 million, putting a harsh burden on millions.

Seema Verma, administrator of the Centers for Medicare and Medicaid Services said, “We think that this creates a foundation and a platform to fix some of the problems that we have in the Part D plan (of Medicare). It’s time for that program to be updated.”

While this is a great first step, the pilot is only slated to last for five years, and it will only apply to the Medicare population- generally, people living with diabetes who are 65 and older. This begs the bigger question: how do we afford our insulin before we are eligible for Medicare? How can we ever hope to make it to that point, if insulin is unaffordable every step of the way? Men with type 1 diabetes have an average life expectancy of 66 years, compared with 77 years among men without it. Women with type 1 diabetes have an average life expectancy of 68 years, compared with 81 years for those without diabetes. Realistically, this may not even help people who have diabetes for very long.

We can only hope that this initiative creates enough momentum for the federal government to start capping the actual price of insulin, for the other 7 million Americans who rely on it every day to survive.

Source: diabetesdaily.com

Centralized Healthcare: Is It Best for the Patient?

There are many ways that a healthcare system can operate. The type of system that is best suited for a population may be dependent on many factors, including the population size, demographics, and various other economic, political and cultural considerations as well. 

Here we discuss some potential approaches to healthcare system organization and major considerations in health care reform. In large, because healthcare is a service that is paid for, the specific payment model represents a large consideration in the way the system works. Another big consideration is whether the services are paid for publicly or through private enterprises (like private insurance companies). Additional “middle-men”, such as pharmacy benefit managers (PBMs), health insurance companies, supply manufacturers and distributors, etc. can further complicate both price-setting, health care delivery, and patient outcomes. 

Many different countries have elected vastly different ways to govern health care. Some, like the UK, rely on a more centralized (public) model to deliver care and services, whereas others, like the US have historically relied more on privately funded providers and health services. In many cases, specialized entitlement programs (like Medicare and Medicaid) that are subsidized by the US Government can help specific patient populations gain access to the services they need at an affordable price. Also, although there are federal guidelines, in the US, states can also enact specific legislation to help people living in their state, by having specific state-run programs for the retired and low-income, as well as policy changes, like co-payment caps on state-regulated health plans for prescription medications like insulin. 

To Centralize… Or Not?

Some hail the benefits of a centralized, one-for-all, affordable, publicly-funded health care system (also referred to as a single payer system). After all, affordable and quality health services are a cornerstone of our well-being as a society. One of the biggest concerns brought about by critics is the lack of competition this could create, resulting in potentially fewer available resources (e.g., providers, supplies, services) and poorer quality of care as a result. In addition, this can also translate to longer wait times to receive health care services. 

As many individuals continue to struggle to afford health care in the US and other parts of the world, more people are pushing for a more comprehensive, centralized public health care system that could provide affordable services to more people. 

Current Payment Models Shape Outcomes

A large factor within a healthcare system is what the payment model to the providers looks like. An expert summary by the MMA Work Group to Advance Health Care Reform explains that there are several main models, each with its potential pros and cons. 

The fee-for-service payment system is one where reimbursement to the providers corresponds directly to the specific services rendered. This is the primary model that is used in healthcare models in the US. One major problem with this system is that getting reimbursement for each service or treatment can create a conflict of interest for providers, resulting in the potential to overtreat patients, losing focus on patient wellbeing, including preventative strategies. Also, this may limit comprehensive care for patients, as different providers may be less likely to coordinate care. On the other hand, this model can encourage productivity. It also offers a relatively direct way of reimbursement for various services. 

On the opposite side of the spectrum, capitation, refers to a carefully managed coordination of reimbursement for services. American College of Physicians explains:

Capitation is a fixed amount of money per patient per unit of time paid in advance to the physician for the delivery of health care services. The actual amount of money paid is determined by the ranges of services that are provided, the number of patients involved, and the period of time during which the services are provided. Capitation rates are developed using local costs and average utilization of services and therefore can vary from one region of the country to another. In many plans, a risk pool is established as a percentage of the capitation payment. Money in this risk pool is withheld from the physician until the end of the fiscal year. If the health plan does well financially, the money is paid to the physician; if the health plan does poorly, the money is kept to pay the deficit expenses.”

This type of model may allow for more flexibility with respect to care delivery, including potentially more innovative and effective services. It may also allow for more collaboration between providers and benefit patients due to potentially shifting more focus to eliciting overall well-being as a goal. On the other hand, setting up this type of system is a complicated and arduous process, and may also limit access for high-risk patients, and possibly reduce patient options, including the providers and services available to them. 

There are multiple variations of coordinated payments within this broad spectrum, and more proposals are continuously being drawn up by various organizations. Some examples include pay-for-coordination, pay for performance, bundled payments, and various forms of comprehensive care.

Importantly experts warn of the potential effects of these systems on patients, as illustrated below –

Opinions Vary

What kind of system will work best to serve the public in a timely manner without sacrificing quality, while also being affordable? The verdict is still out, and there will likely never be a consensus. Lessons learned from different countries, and on a more local level, will likely continue to shape the dialogue and direct (typically slow-moving) policy changes. 

Some feel strongly that universal healthcare is a right, and not a privilege. Others worry that such a system will decrease the quality of services, increase wait times, and thus negatively affect the patients and their health outcomes. Some believe there is no one-size-fits-all, and that specific systems must be driven from the ground up at a very local level. 

***

What do you think? How is healthcare organized where you live and do you think it is an effective model? How do you think policy has affected your diabetes-related care? How do we go about effecting significant policy changes, when and where they’re needed?  

Source: diabetesdaily.com

What to Do If You Need Insulin Right Now

This content originally appeared on Beyond Type 1. Republished with permission.

By Lala Jackson

What to Do If You Have No Insulin at All

Go to the emergency room. Under US law (The Emergency Medical Treatment and Active Labor Act), the emergency room cannot turn you down in a life-threatening emergency if you do not have insurance or the ability to pay.

If Emergency Room staff is telling you they cannot treat you, stay put. Be clear that you are in a life-threatening emergency because you have type 1 diabetes (T1D) but do not have insulin. Do not leave. Please note that urgent care centers are not required to abide by the same laws.

Once you are stabilized and before you leave the hospital, hospital staff is required to meet with you to make sure you understand that you are leaving the hospital of your own accord. At this time, let the hospital staff person know about any financial situation you are in. Some hospitals are aligned with charities that can help you pay. Other hospitals offer payment plans based on your situation. No matter your financial situation, know that your life is the most important thing.

What to Do If You Have Some Insulin, But Are About to Run Out

Utilize Kevin’s Law

If you have an existing prescription at your pharmacy, but have not been able to get ahold of your healthcare provider to renew the prescription, you may be able to take advantage of Kevin’s Law. Kevin’s Law was named for a man with T1D who passed away after not being able to access his insulin prescription over the New Year’s holiday. Under the law, pharmacists are able to provide an emergency refill of insulin in certain states, without the authorization of a physician to renew the prescription. Rules around the law vary from state to state and not all states have the law in place. Kevin’s Law only applies to those who have an existing prescription and, depending on where you live, your insurance may or may not cover the refill. Learn more about Kevin’s Law, including whether or not your state has it, here. Please note, your pharmacist may not know the law by name, or know that the law exists. If you are in a state with Kevin’s Law and working with a pharmacist who is unaware, stay put and ask to speak to someone else in the pharmacy.

Ask Your Physician for Samples

While this is not a long-term access option, your care provider may be able to provide you with a few vials/pens for free, and bringing your HCP into the access conversation means that they can help direct you to other options that might be available to you, like local community health centers with insulin available.

Utilize Patient Assistance Programs – Standard out of Pocket Cost $0

  • If you take Lilly insulin (Humalog, Basaglar) call the Lilly Diabetes Solutions Call Center Helpline at 1-833-808-1234
    for personalized assistance. You may be eligible for free insulin through LillyCares.
  • If you take Novo Nordisk insulin (Fiasp, NovoLog, NovoRapid, Levemir, Tresiba) and demonstrate immediate need or risk of rationing, you can receive a free, one-time, immediate supply of up to three vials or two packs of pens by calling 844-NOVO4ME (844-668-6463) or by visiting NovoCare.com
  • If you take Sanofi insulin (Admelog, Lantus, Toujeo): the Patient Connection Program provides Sanofi insulins to those who qualify, which is limited to those with no private insurance and who do not qualify for federal insurance programs and who are at or below 250% of the federal poverty level – with a few exceptions.

Utilize CoPay Cards – Standard out of Pocket Cost $35 – $99 per Month

Copay cards that reduce the out-of-pocket cost you pay at the pharmacy exist for most types of insulin. Some copay cards can be emailed to you within 24 hours. Currently, copay programs exist for:

  • Lilly, capping copays at $35 per month for those with no insurance or with commercial insurance
  • Novo Nordisk, capping copays at $99 for those with no insurance or with commercial insurance
  • Sanofi, capping copays at $99 for those without prescription medication insurance
  • Mannkind, capping copays at $15 for some of those with commercial insurance

Unfortunately, copay cards are typically not available for those insured through Medicaid or Medicare. Use the tool from the Partnership for Prescription Assistance to search in one place for discount programs and copay cards you qualify for here. Please be aware that you will need to search by brand name (i.e. Humalog, Novolog), not just “insulin.”

Get R & NPH Human Insulins – Standard out of Pocket Cost $25-$40 per Vial

R (Regular) and N (NPH) human insulins are available over-the-counter in 49 states and cost much less ($25-$40 per vial at Walmart) than analog insulins such Novolog, Humalog, Lantus, or Basaglar. They also work differently than analog insulins – they start working and peak at different times – but in an emergency situation can be a resource. Speak with the pharmacist or your healthcare provider if possible before changing your regimen and keep a very close eye on your blood sugar levels while using R & N insulin.

Research Available Biosimilar (Generic) Insulins

The biosimilar insulin market is changing rapidly as the FDA adopts new regulatory pathways to more efficiently approve interchangeable insulins that may be available for a lower price. Ask your healthcare provider for the most up-to-date options for you. A few options available are:

  • A generic version of Humalog — Insulin Lispro — is available at pharmacies in the U.S. for $137.35 per vial and $265.20 for a package of five KwikPens (50% the price of Humalog.) If you have a prescription for Humalog, you do not need an additional prescription for Lispro; your pharmacist will be able to substitute the cheaper option. Insulin Lispro is not currently covered by insurance.
  • Authorized generic versions of NovoLog and NovoLog Mix at 50% list price are stocked at the wholesaler level. People can order them at the pharmacy and they’ll be available for pick up in 1-3 business days

If you have enough insulin to last you a few days, but need to figure out where to get a more reliable, consistent supply, visit our Get Insulin page to find further resources.

Source: diabetesdaily.com

Patient Advocate Speaks Out on Eli Lilly’s Lowered Prices

By Madelyn Corwin

On April 7, 2020, Eli Lilly announced it would be selling its insulin to select patients for $35/month. This covers the uninsured and people with high deductibles. While myself and the entire diabetes community are happy lives will be saved through this news, we are not going to commend Eli Lilly for doing what they could have and should have done a decade ago.

We have already lost lives from rationing insulin, people have lost their vision, their limbs, their college savings accounts, their cars, their homes and so much more. People have literally chosen not to marry the love of their life just because they want to remain on Medicaid for their insulin. People have turned to the black market to buy insulin for years because of Eli Lilly, Novo Nordisk, and Sanofi’s price gouging. We can never get those lives back, those homes back, or people’s eyesight back. No amount of money or affordable insulin can fix the irreparable damage that has been done by the big 3 insulin manufacturers.

Madelyn Corwin, advocate for affordable insulin

This is not to say I’m mad about the $35 announcement. You have to understand where thousands of insulin4all advocates are coming from right now. Many advocates have made unthinkable sacrifices just to be able to pay that bill at the pharmacy counter so they can live to see tomorrow. People have skipped meals for days and worked out to the point of injuring themselves to bring their blood sugar down because they didn’t have enough money for more insulin. Many have rationed and been put in the hospital for DKA, only then to receive an even larger medical bill that they cannot pay, all at the hand of companies like Eli Lilly.

While the end goal is obviously and will always be affordable and accessible insulin for every person on this planet, we will not praise any manufacturer for doing the right thing after they’ve done the worst thing possible for years. It’s like when a country starts a senseless war and then ends it ten years later. Like, alright. Thanks, I guess. You profited, I guess. But the money paid to that senseless war by citizens is now gone and lives on both sides are also gone. So, I guess you did the right thing by ending the war, but why were we even there to begin with? And now, there is no way to repair the damage. So now, we will hold X country accountable forever for the lives and money lost, and this will be in the history books. This analogy works well with this $35 insulin issue.

There will always be an ulterior motive to these types of things, especially when Eli Lilly and other insulin manufacturers have pushed against patient advocates when trying to get emergency insulin access bills passed in their states (Alec Smith Emergency Insulin Act). These manufacturers send money to every politician they can possibly get to take their checks – yes, that includes the state level as well – so do your research. Here is a list of groups Eli Lilly has given money to. A big reason bills cannot get passed quickly or get passed at all is because there are many insulin price gouging lobbyists standing in the way. Why would Lilly suddenly lower the price when they spend millions lobbying our politicians? Why would they do this when they jump through patent loopholes (evergreening). Why would they be continuously paying off anyone trying to make a cheaper generic? Something does not add up.

cost of type 1 diabetes infographic

Infographic: T1DInternational.com

I may be pessimistic, but personally I do not and will never trust any insulin manufacturer after what they have done. I know a lot of people do not understand the capacity of the insulin4all movement, but it’s more than the t-shirts and social media posts. A great deal of patient advocates are working extremely hard every single day to get the insulin price-gouging story heard. There are hundreds of advocates interviewed by large news networks annually. These advocates have built personal relationships with their representatives and advocates that spend hours a day on social media trying to make a difference.

Insulin manufacturers have seen this; they’ve seen the uproar. They know we exist, and they know we are angry. They’ve known this for the last six or so years, yet they have done nothing. In fact, they mock us, and they pay off politicians to push their big pharma narrative. Common example: “Insulin has to be priced at $300 for research and development.” We’ve all heard it from some politician who happily accepts thousands of dollars from an insulin manufacturer.

Eli Lilly CEO David Ricks has even laughed at the question of affordable insulin and pushed the blame onto insurance companies and PBMs. While advocates are 100% aware that insurance companies and PBMs also play a large role in what the price of insulin is in the USA (you know, since they all profit off of our struggle at the pharmacy counter), he has twisted the narrative to make Lilly look like the good guy.

Lilly does this frequently; it’s probably in their training manuals by now. They gaslight patients and try to make it look like we’re the ones who don’t know what’s going on. Don’t fall for it. This is classic insulin manufacturer PR, they’ve been doing it for years. They love to push the blame elsewhere when in reality, those are the people they happily work with and write up their contracts with, all so they can make billion-dollar profits. In reality, they can just lower the price. They just proved that to us on April 7, 2020. Again, this should show you this company cannot be trusted and you should rely on your own personal, unbiased research.

On a recent conference call (March 16, 2020), Diabetes Connections with Stacey Simms got on with Andy Vickery at Eli Lilly. Andy is on the Lilly Diabetes Insulin Team (skip to 3:00 to hear the question and answer). Stacey asks Vickery, “In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, why not be a hero in this space? And say right now that Lilly will cut the price of insulin to $25 or $35? Why not let people fill prescriptions for what they are written? For a price that would obviously help people around this country feel better about the one thing that they are… devastatingly worried about?”

Vickery responds, “I appreciate the frustration… If we cut that price, could that disrupt the supply to our other supply channel partners… We have contracts in place with them for a certain price. It would go beyond our ability to cut that price. We would have to renegotiate with them… We are constantly looking at the things we can be doing at this time…” He continues on to talk about their authorized generics.

Let’s take a look at how he also, like David Ricks, pushes blame onto PBMs and insurance companies while taking no responsibility at all for their role in all of this. He says he would have to renegotiate with PBMs and wholesalers. This is quite funny because that means if they lowered the price of insulin to $35, then they got everyone in their supply chain to agree on that. Why didn’t they get everyone to agree and play nice in 2012 when this became a devastating price for Americans to have to pay? Why didn’t they do this after we lost our first life to insulin rationing? Because they enjoyed the profit they were making and felt no guilt. There will always be an ulterior motive with these people.

There is also always a “fine print” to these copay cards. If you’ve ever used a patient assistance program, there’s a good chance you know what I’m talking about. Diabetes advocates are still doing research and looking for answers from Lilly reps regarding the terms and conditions. When does this end? How much can it be used? Is there a maximum amount, like with all of their other copay cards? As far as it looks right now, this program could be maxed out at a $7,500-annual limit (so, it’s good for less than a year of insulin for the average patient). Laura Marston, an incredible diabetes insulin4all advocate and lawyer has been compiling this information for us and will provide us with more info as she receives it. Again, I am looking for further confirmation for this and we have people searching high and low for the extra terms and conditions.

[UPDATE: Laura has done some more investigating on the situation, “It’s a limit on the difference between retail price ($325 times number of insulin vials) and $35 if you’re uninsured. If you’re insured, it’s the difference between your copay and $35.” We have still not seen official terms and conditions released by Eli Lilly.]

To close off this article, I decided to reach out to a few of my friends with diabetes who have struggled to get their insulin since their diagnosis and people who lost family members with diabetes to insulin rationing. If you are still struggling to understand why people will never commend insulin manufacturers for making bare minimum decisions, read through these:

“I believe this is once again another PR stunt. We have seen them do this type of thing several times over the past few years when pressure gets put upon them. If it was so easy for them to lower the price during this time of a pandemic, why did they not lower it years ago when people were crying out for help, people online begging for assistance, people like my son Alec who died because he could not afford his insulin. I want to know why now? Why after meeting with Mike Mason and sharing my story of how Alec died and many others stepping forward and sharing their stories. How long is this price going to be in effect for? How are they going to transition people from paying $35 now to $350 when this crisis improves?”

– Nicole Smith-Holt, who lost her son to insulin rationing in 2017.

 

“So I had to purchase out of pocket on multiple occasions. Usually, at fault of my insurance company (which would also be the fault of Lilly considering the contracts they write up and agree on with them), but again, we know it shouldn’t come to that. First time, I broke my last bottle. I was still 10 days from refill through insurance. I had to pay out of pocket, $280 for a vial. Second time, my insurance changed and told me I could only get Novolog covered, but I only had a prescription for Humalog. My doctor’s office wasn’t open and able to get me a prescription, so I had to pay the list price out of pocket again with the Humalog script I had on file (I would’ve died if I didn’t get it). Third, was because they forced an RX required on the box, I didn’t have a prescription, and I was running low on Humalog. I was out on tour for a whole month and running on my last pump fill up on my flight home. My flight was delayed overnight, and I was about to run out of insulin within the next 4-5 hours. With no prescription and no one up at 2 AM to get me one, I had to go to the ER and have them fill my pump, which took 3 hours of waiting and a bill of $550 for 100 units of insulin. Thanks, Lilly.”

– Ryan Ank

 

“I think it’s great that they’re doing this because people really need all the help they can get right now. Eli Lilly has been the leader of everything insulin-related. This means they gouged prices, and the other pharma companies followed. They lowered prices, albeit temporarily, so the others might follow. My anger stems from this, proving they could have lowered the prices at any time. So many people died from insulin rationing. Their deaths could have been prevented. So many lives cut short. Lilly’s responses are always R&D, but this $35 cap is proof of their lies and greed.”

– Nicole Hood, who lost her son to insulin rationing in 2018.

Source: diabetesdaily.com

World Diabetes Day 2019: The Most Important Issues We Face

Today is World Diabetes Day. What are the most important issues that you face as a person with diabetes? See what the online diabetes community had to say.
Source: diabetesdaily.com

The High Cost of Priming Insulin Pens

This content originally appeared on Diabetes Stories. Republished with permission.The cost of insulin has skyrocketed in the past several years. But there’s another costly wastage no one is talking about. And that’s the two units of insulin you shoot into the air to prime your insulin pen. More about this below. Regards the cost of insulin […]
Source: diabetesdaily.com

How and Why People With Diabetes Stockpile Supplies

For people with diabetes, an interruption to insulin supply is quickly life-threatening. It’s also seriously problematic to endure a disruption in other diabetes necessities like glucose test strips or CGM (continuous glucose monitor) sensors or insulin pump cartridges. Many people with diabetes strive to have a small stockpile of back-up supplies because what do we do […]
Source: diabetesdaily.com

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