While we look back on 2024, we can reflect upon the incredible progress we’ve made in advancing breakthroughs toward cures and improving everyday life with T1D.  

This wouldn’t have been possible without each and every one of you and your continued support of our mission as we drive toward cures for T1D.  

Here are the top 11 advances that together, we made happen in 2024: 

Breakthrough T1D announced the launch of Project ACT, an initiative aimed at accelerating breakthroughs in T1D cell replacement therapies that do not require broad immunosuppression. Recent advances, such as Vertex’s stem cell-derived islets, have been made possible by Breakthrough T1D’s Cell Therapies program as part of our drive toward cures. The goal of Project ACT is to push research, development, regulatory policies, access, and adoption to increase the rate at which cell therapies without the need for broad immunosuppressants will become available to people with T1D.  

Why this matters: Immunosuppressive drugs are a barrier to access to cell replacement therapies because of their toxic side effects, which is why islet transplants are currently only available to people with severe low blood sugar (hypoglycemic) unawareness and episodes. By striving toward a future where we realize the benefits of cell replacement therapies without the downsides of the current regimen of immunosuppressants, we will make islet replacement therapies broadly accessible to the T1D community.  

Vertex’s clinical trial of VX-880, a first-generation stem cell-derived islet replacement therapy for people with severe hypoglycemia (requiring the use of immunosuppressants), has transitioned into a phase 1/2/3, or pivotal, trial. This news comes after Vertex shared incredibly promising data in the earlier phases of the trial, including 11 of 12 participants reducing or eliminating the need for external insulin.  

The upcoming trial will expand to 50 people who will get a single, target dose of VX-880. The primary endpoint will be insulin therapy independence without severe hypoglycemic events after one year. This is the final clinical testing stage before Vertex can seek FDA approval.  

Breakthrough T1D has a decades-long relationship with Vertex and the leading scientists behind stem cell-derived islet therapies, an advancement that would not have been possible without Breakthrough T1D funding and support. The T1D Fund had invested in Semma Therapeutics, which was acquired by Vertex Pharmaceuticals in 2019, eventually leading to the active clinical development of VX-880 in T1D. 

Why this matters: This is the first time a scalable cure for T1D is entering phase 3 clinical trials—a significant win and a huge step toward accelerating the delivery of cell therapies to members of the T1D community 

Tegoprubart: Transplant Survival Without Standard Immunosuppressive Drugs 

Tegoprubart, an anti-CD40L immunotherapy that limits the immune response, is being tested in a Breakthrough T1D-funded study in people with T1D and severe hypoglycemia who have received deceased donor islets. Eledon Pharmaceuticals announced promising initial results in which two of three people achieved insulin therapy independence. According to the study, tegoprubart is safer for both people and transplanted cells in comparison to broad immunosuppressants, with milder side effects and greater islet survival. To further support this effort, the T1D Fund: A Breakthrough T1D Venture invested in Eledon

Cell Pouch: A Home for Transplanted Islets 

Breakthrough T1D has been supporting the development of Cell Pouch, an implantable device from Sernova that provides a safe, immune-protected environment for transplanted islet cells. In phase 1/2 clinical trials, all six people who received donor islets within the Cell Pouch achieved sustained insulin therapy independence with immunosuppressants, including long-term islet survival and function over five years without harmful side effects.  

Why this matters: Standard of care immunosuppressive drugs that help avoid transplant rejection come with unwelcome side effects, such as increased risk of infection and malignancy and toxicity to kidneys, nerves, and islet cells themselves. Breakthrough T1D is focused on finding alternative ways to keep transplanted islet cells alive and healthy so that cell replacement therapies can become more tolerable and accessible.   

In a major effort spearheaded by Breakthrough T1D, the first internationally recognized clinical guidelines for those who test positive for T1D autoantibodies have been published. These include guidance on monitoring frequency, education, and psychosocial support in addition to recommended actions for healthcare professionals (HCPs) when the risk of T1D progression is high. The guidelines were cooperatively developed with over 60 international experts spanning ten countries. 

Why this matters: Previously, there had been no consensus on monitoring guidelines for people who test positive for T1D autoantibodies. Standardization of clinical recommendations means that individuals, families, and HCPs have tangible next steps to monitor early T1D progression and catch life-threatening complications sooner.  

  • Breakthrough T1D is leading a campaign to secure a recommendation for T1D screening from the U.S. Preventative Services Task Force (USPSTF), the main authority for preventative care. Approval would require T1D screening to be covered by insurance—an important step forward in expanding access. 
  • Driven by Breakthrough T1D’s advocacy efforts, The Centers for Medicare and Medicaid Services (CMS) established a unique ICD-10 code for stage 2 T1D. ICD-10 codes are used by HCPs to classify and document diagnoses, symptoms, and procedures. These codes provide a unified way for doctors and providers to indicate what diseases or conditions a person has in their electronic health record (EHR), empowering HCPs to document accurate diagnoses and provide the best possible care. 

Why this matters: T1D early detection is critically important to prevent life-threatening complications at diagnosis and to give people necessary resources to make informed decisions about their health. Integrating T1D screening into the U.S. healthcare system will increase access to care.  

The past year has seen some important advances in glucose management therapies and devices: 

  • Cadisegliatin, an activator of a blood sugar regulator in the liver, is being investigated in a phase 3 clinical trial (TTP399) as an adjunct therapy to insulin for people with T1D, although it is currently placed on clinical hold. vTv Therapeutics, the trial sponsor, is also a T1D portfolio company. 
  • The Omnipod 5 app is now available for the iPhone, making it easier to control the Omnipod without the need to carry a controller. It can also integrate with the Dexcom G6 continuous glucose monitor (CGM).  

Why this matters: While advancements in glucose management have been pivotal in improving health outcomes for people with T1D, access remains a challenge. AID systems are globally underutilized, and not everyone has the necessary technology to connect devices. Breakthrough T1D is working to not only support advances in glucose management but also increase access.  


Related content: While Breakthrough T1D consistently strives to improve the lives of those living with T1D, as an organization we have made incredible progress in the development of AID systems, also called the artificial pancreas systems. Read a historical perspective written by Breakthrough T1D volunteer Doug Lowenstein that covers conception to FDA approval of the first artificial pancreas systems, which changed the lives of people with T1D.  

An inquiry spearheaded by the Breakthrough T1D affiliates in the U.K. uncovered risks of developing T1D eating disorders (T1DE), including bulimia, anorexia, or insulin restriction to lose weight. There is a significant gap in education and clinical guidelines for HCPs, a lack of internationally recognized criteria for T1DE diagnosis, and insufficient care integration, leading to preventable complications and healthy years of life lost. Breakthrough T1D recognizes the importance of spreading awareness and support for T1DE, and much work is needed to improve the lives of those living with T1DE.  

Why this matters: There is an urgent need to change the way T1DE is approached, including integrated physical care with mental health services to get people with T1DE the access to care that they need.  

In a study that included people with T1D, finerenone (Kerendia®) has been shown to improve cardiovascular outcomes in adults with heart failure. The drug is already approved in the U.S. to treat kidney and cardiovascular disease in people with T2D. Based on these results, Breakthrough T1D is supporting a clinical trial (FINE-ONE) in conjunction with Bayer to investigate the use of finerenone for T1D with the hopes of reducing kidney complications.  

Why this matters: Kidney and cardiovascular disease remain significant challenges for those with T1D, especially given the FDA’s recent rejection of an SGLT inhibitor to lower blood glucose in people with T1D and chronic kidney disease. Yet, a new clinical trial (SUGARNSALT) will better assess the benefits versus risks. 

Breakthrough T1D is advocating for the regulatory approval of C-peptide, a biomarker for insulin production by beta cells, to be used as an endpoint in clinical trials. An endpoint can accurately predict a meaningful benefit in clinical trials for disease-modifying therapies (DMTs; treatments that can slow, halt, or reverse T1D). To support this endeavor, Breakthrough T1D scientists and an expert consensus panel published research with evidence supporting C-peptide as an endpoint. Breakthrough T1D is continuing to engage with regulators, coordinate with industry, and assess more clinical trial data to drive this effort forward. 

Why this matters: Current clinical trial endpoints (HbA1c, hypoglycemia, and complications) are not the best way to gauge the clinical benefits of T1D therapies. If C-peptide gets regulatory approval to be used as an endpoint, clinical trials could be smaller and shorter while still accurately assessing the advantages of a DMT. This means that drug development can move more quickly, and people with T1D will be able to access therapies sooner. 


Related content: Two years ago, the T1D community received the incredible news that Tzield® had become the first FDA-approved disease-modifying therapy that can significantly delay T1D onset. Breakthrough T1D volunteer Doug Lowenstein recounts the life-changing drug’s journey nearly 100 years after the discovery of insulin. 

The T1D Index is a data simulation tool that measures the global health impact of T1D, bridging gaps in our knowledge of public health statistics. T1D Index 2.0 has new and improved functionality, including advanced simulation capabilities, validation of data, and enhanced user experience. Breakthrough T1D contributed to both the development and improvement of the T1D Index.  

Why this matters: The T1D index is critical in defining the intercontinental scope of T1D, driving us toward country-specific solutions and improved global health outcomes.  

Earlier this year, JDRF rebranded to Breakthrough T1D. While our mission remains the same, our name needs to better reflect who we are and where we’re going. Our new brand aligns with our mission to accelerate life-changing breakthroughs for those of every age living with T1D as we work toward a world without it.   

Why this matters: The proof is in the name—each day we strive to increase and accelerate breakthroughs in T1D, and it’s critical for our brand to accurately reflect our mission. 

It’s certainly been an exciting year! While we still have more work to do, it’s crucial to celebrate our wins, both big and small, to see how far we’ve come in our push to make T1D a thing of the past.

Together, we’re accelerating breakthroughs for people with T1D, and the support of the T1D community drives our mission forward every single day, leading the way to lifechanging therapies and cures. Let’s see what 2025 has in store! 

With the holiday season and end of the year approaching, it’s time to revisit your annual health plan benefits which could ultimately save you money AND set you up for success in the coming year! Here are our tips for maximizing your health benefits before the new year.

Schedule remaining visits

If you’ve met your plan’s deductible or out-of-pocket maximum, most of your doctor’s visits will either be fully covered or cost significantly less. Check with your healthcare providers to see if you can fit in any follow-up visits you may need before the end of the year since they may cost you less than waiting until the new year. If you haven’t checked off all of your preventive care visits, like a physical, schedule those before December 31, as those appointments are typically covered in full by insurance plans. While the doctor’s visit is free, some lab work may not be, even for preventive care, so you may want to take advantage of your benefits now before the beginning of a new year of benefits.

Get ahead

Deductibles and out-of-pocket maximums will reset as of January 1. Make sure you’re prepared for this by budgeting for increases in health spending at the beginning of the new year. If you are due for refills on a prescription or diabetes supplies, make sure to fill it before the end of the year if possible. Also be prepared for any cost fluctuations that may affect your budget. For example, your co-pay for insulin or supplies may be changing next year. If you have Medicare, the out of pocket cost for insulin in Part D is capped at $35 starting on January 1. The cap starts on July 1 for people who use tubed pumps and get their insulin from Medicare Part B.

Research any changes to your plan in advance so  you aren’t surprised next year. If you are using a co-pay savings card, it may expire at the end of the year. Check the card website or call the company that issues the card to check and renew if needed. Don’t wait until you are at the pharmacy to realize your co-pay card has expired!

Use your benefits

Make sure to use all of your health spending benefits from this year so you don’t lose them. If you have a Flexible Spending Account, you’ll need to use all of those funds before December 31, or you’ll lose them. Some employers allow a grace period of a few weeks but try to use your funds by the end of the year. If you don’t have a specific use in mind, you can stock up on alcohol wipes, glucose tablets, ketone strips, a spare blood glucose meter and test strips, sharps containers, or over-the-counter medicines. If you have a Health Savings Account, rest assured that those funds will roll over to the next year and you can use them or save as you normally would.

Above all else, always be aware of any new changes to your plan and upcoming deadlines. Being prepared and doing a little research will ensure that you are off to a great start in the new year.

For additional resources for navigating insurance with type 1 diabetes (T1D), visit our Health Insurance Guide.

Since last open enrollment, there have been a number of changes that affect Medicare and type 1 diabetes (T1D). Here is a summary of these changes so you can keep them in mind as you think about Open Enrollment this year.

More CGMs covered

In March 2022, Medicare began to cover any CGM that works with an insulin pump or is labeled to be able to dose insulin. For more information, see our blog post from that time: https://www.breakthrought1d.org/blog/2022/03/10/more-cgms-now-covered-by-medicare/  People with Medicare coverage and T1D now can choose from nearly all FDA-approved CGMs to measure their blood glucose levels. Increased choice makes it easier to use the CGM that works best for your particular needs.

All AP systems covered

Currently, there are three artificial pancreas systems that have FDA clearance and Medicare coverage:  Insulet Omnipod 5, Medtronic 670G/770G and Tandem Control IQ. Historically, this has not always been the case. When Medicare expanded coverage of CGMs in 2021, it also expanded coverage to include the Medtronic 670G and 770G, so now all AP systems are covered by Medicare for people with T1D.

$35 Insulin in Both Part B and Part D and Medicare Advantage

Starting in January 2023, Part D covered insulins will cost no more than $35 per month per insulin at the pharmacy counter or mail-order checkout. For tubed pump users who get their insulin through Part B, the $35 out-of-pocket cap will go into effect on July 1, 2023.

Medicare Advantage (MA) and Part D plans can still limit coverage to certain brands of insulin, however they must cover at least one of each type of insulin (long-acting, rapid-acting, etc) and in the different delivery forms (vials, pens, etc).

While the out-of-pocket cost of insulin has been capped at $35 for both Part B and Part D, most Part D or MA plans will NOT reflect this cap when shopping for a plan. Unfortunately, this means that cost estimations from the Medicare Plan Finder will not be accurate for insulin.  CMS has recommended when adding drugs to the cost estimator, do not include insulin and instead add $420 (or $840 if you use two types of insulin) to the estimated cost of that plan. They then recommend adding the insulin to the cost estimator to ensure that your plan covers your particular insulin.

When January 2023 rolls around, it is very possible that many MA and Part D plans will not have fully implemented the $35 out of pocket cap at the pharmacy checkout. If this is the case, the plan must refund any overpayment that you make at checkout within 30 days. This will be in effect for January 1, 2023-March 31, 2023.  After that time, Part D plans are expected to have made the necessary changes to their internal systems to allow for the $35 cap to be implemented at the point of sale.

Deductibles won’t apply for covered insulins for Part D starting January 1 and Part B starting July 1, 2023. This means that you will only pay the copay for your insulin, and the amount paid will count toward your deductible. Keep in mind that your CGM, test strips, insulin pump or supplies will still be subject to the deductible, which is $226 for Part B and a maximum of $505 for Part D plans.

By 2025, Out of Pocket Cap on Part D of $2000

Looking forward, there will be more changes coming to Medicare Part D in 2024 and 2025. In 2024, Part D plans will have to cap overall out of pocket costs at $3250 and in 2025, the out of pocket cap will be $2000 and can be spread throughout the year. These changes are additional to the 2023 changes to coverage for insulin.

Shopping for Medicare plans can be complicated, especially when you have a chronic condition like T1D. With many welcome changes coming to insulin coverage in 2023, it is critical that you understand the changes and how they could impact your plan shopping.

By: Amanda Gottlieb and Jackie Le Grand

Date: 11/1/24

Headline: It’s Open Enrollment Season. Here’s What to Consider for 2025.

Every year around this time, open enrollment begins for individuals and families to select their healthcare coverage options for the following year. Staying informed about your plan and coverage options will empower you to take charge of your health and feel more confident that you made the right decisions.

If you have Medicare or Medicare Advantage, click here to learn more about this coverage and the changes for 2025.

If you have Medicaid coverage and have any questions or need to update your information, click here.

If you have employer or marketplace insurance, keep reading to learn what to consider this open enrollment season.

Timing and Deadlines

If you get your health insurance through healthcare.gov, your open enrollment will run from November 1, 2024 to January 15, 2025. If you live in a state that runs its own health insurance marketplace, there may be some slight differences in the timeframe, but most open enrollment periods begin on November 1. No matter which state you live in, visit https://www.healthcare.gov/ to find your state’s enrollment period and start shopping for insurance or see if you are eligible for Medicaid. For the 2025 plan year, more cost help is available than in past years, even for people who were not eligible in the past. This includes some families with employer-sponsored health insurance. Be sure to visit https://www.healthcare.gov/more-savings/ to see if you may be eligible for this cost help.

If you receive healthcare through an employer, your human resources department will communicate when your enrollment period is (typically in November or early December). They should also note whether enrollment is passive or active, which will determine if any actions need to be taken on your part. By staying informed, you will allow yourself ample time to understand any plan changes or differences in costs that your employer may have announced.

No matter where you get your health insurance, pay close attention to deadlines!

Plan Types

With open enrollment comes the opportunity to reevaluate what plan is most suitable for your individual and family needs. Plan types offered typically include high deductible health plans (HDHP), preferred provider organizations (PPO) and health maintenance organizations (HMO) – all of which have different coverage types, benefits, and costs. For the type 1 diabetes (T1D) community, understanding your deductible responsibility, out-of-pocket costs for drugs, devices, and supplies and if your preferred doctors are in-network are all factors to consider before making a selection. Even if you know you’ll have the same plan again for 2025, you should check if any of your current prescription formularies* have changed because it could affect how your T1D management tools are covered. (*Formularies are the lists of prescriptions, both brand name and generic, that your insurance plan covers. They are usually divided into tiers or categories which help you understand what brands are covered and what their cost will be.) If there will be changes to the formulary, you may need to get a prescription for a new brand of product from your provider when the new year arrives.

How Much Will This Cost Me?            

Cost is an important factor that many consider when it comes to choosing health coverage. Especially for those impacted by T1D, balancing cost with choice and robust coverage can seem challenging. If you are still unsure about costs and specific medication coverage, talk to your HR department, or get help from Healthcare.gov to get your questions answered if you’re enrolled in a marketplace plan. If you have different plan options, writing or typing out a table to look at all the different costs across the plans may make it easier to weigh the different plans. Include monthly premiums, deductibles, insulin copays, CGM, and pump supply costs, glucagon costs, and an estimate of how many times you might visit a doctor or other provider and pay a copay.

Breakthrough T1D also has resources to help! For more information and tools for understanding insurance while living with T1D, visit our Health Insurance Guide.

In March 2022, Medicare beneficiaries became eligible for coverage for a greater number of CGMs than ever before. Due to a final rule issued on December 21, 2021 by the Centers for Medicare and Medicaid Services (CMS), any CGM that connects with an insulin pump or a standalone receiver will be covered by Medicare for anyone otherwise eligible. This rule took effect at the beginning of this month, so people with Medicare now have access to Dexcom G6, Abbott Freestyle Libre, Senseonics Eversense and Medtronic Guardian, as long as these CGMs are used with an insulin pump or with use of a standalone receiver.

Previously, CMS only covered therapeutic CGMs which are those devices approved by the Food and Drug Administration (FDA) to make insulin dosing decisions. This expansion means that people on Medicare with diabetes will now have access to a broader choice of CGMs similar to what is available to those with commercial insurance.

Under Medicare regulations, CGM remains classified as durable medical equipment, so it must contain a “durable” part, in this case, a receiver, that lasts at least three years. With this rule, CMS has determined that any CGM being used with an insulin pump meets the definition of DME, since the insulin pump itself is an item of durable medical equipment. CMS also cited the clinical benefit of alarms for high or low glucose levels, specifically during sleep, as a justification for expanding coverage to CGMs that are non-therapeutic. The only FDA-approved CGM on the market that is not covered by Medicare is the Medtronic Guardian standalone CGM that uses a mobile phone as its exclusive receiver.

In July 2021, CMS announced that people with diabetes no longer needed to prove that they are testing their blood sugar at least four times per day with a blood glucose meter to get initial Medicare coverage for a CGM device. Additionally, language was clarified to allow individuals using inhaled insulin, not just injected insulin, to access CGM. To read more about this, read our blog post here

All of these recent changes are long-sought advocacy goals for Breakthrough T1D and welcome news for members of the T1D community.                                                        

The positive impact of CGMs on the health and well-being of those with T1D is clear and Breakthrough T1D has long advocated for broader coverage and choice of CGMs, resulting in private plan coverage starting over a decade ago, and Medicare coverage on a partial basis in 2017 and expansion this year. CMS’s decision marks an important milestone for Medicare’s coverage of therapies that will improve the lives of those with T1D.               

Breakthrough T1D will continue to work closely with CMS, other Administration officials, and members of Congress to ensure that everyone with T1D, regardless of insurance status, has access to life changing therapies.   

In conjunction with leading partners in diabetes, advocacy, and healthcare, Breakthrough T1D lends its support to Civica, to help combat a nationwide insulin affordability crisis.

This project will manufacture and distribute low-cost biosimilar insulin options for three of the most-prescribed insulins: glargine (Lantus®), lispro (Humalog®), and aspart (Novolog®). It will enable anyone to purchase insulin at no more than $30/vial or $55/box of five pens, regardless of insurance status. Civica anticipates that the insulins will be available in 2024.


What is a Biosimilar? A biologic drug that is highly similar to the original drug. Biosimilars can be manufactured when the original drug patent expires. An interchangeable biosimilar may be substituted in place of the originally prescribed drug at the pharmacy counter.


Currently, insulin can cost between $175 and $300 a vial and up to $1,000 a month. Studies have shown that these inflated costs can cause up to one-quarter of people with diabetes to skip or ration their insulin [1], potentially leading to medical emergencies, severe complications, or death. Once brought to market, these biosimilars will save lives by significantly lowering the cost of insulin for millions of Americans.

Breakthrough T1D’s Leadership

Over a 10-year period, the cost of insulin increased threefold [2]. That’s why lowering the cost of insulin is such an important and necessary step, so that no one should have to choose between paying the rent or obtaining this life-saving medication.

Breakthrough T1D has been fighting the rising cost of insulin for years, advocating for both private sector solutions and action in Washington, D.C. Through our Coverage2Control campaign, we have rallied our community to call for insulin manufacturers, health plans, employers, and the government to take action to lower the cost of this life-saving medication. Breakthrough T1D executives have met repeatedly with the leadership of each of the three major insulin manufacturers and called on them to find new ways to lower the price.

While some progress has been made, there is more to be done. Breakthrough T1D will not rest until we have long-term solutions that make this life-saving insulin affordable for everyone, whether someone has private insurance, Medicare, or no insurance at all. Our support of the Civica project addresses a wide-spread issue plaguing far too many people who depend on this medication.

Furthermore, by making insulin more affordable, people will be more likely to follow the course of care prescribed by their healthcare providers, as opposed to thinking about the stress it will put on their wallets.

Hear more about this historic partnership by Aaron J. Kowalski, Ph.D., CEO of Breakthrough T1D:

1. Herkert D, Vijayakumar P, Luo J, Schwartz JI, Rabin TL, DeFilippo E, Lipska KJ. Cost-Related Insulin Underuse Among Patients With Diabetes. JAMA Intern Med. 2019 Jan 1; 179 (1): 112-114.

2. Hua X, Carvalho N, Tew M, Huang, E, Herman W, Clarke P.  Expenditures and Prices of Antihyperglycemic Medications in the United States: 2002-2013, JAMA, April 5, 2016; 315 (13): 1400-1402.

This fall, it’s important to remember that open enrollment for health insurance is right around the corner. For those of you on Medicare, beginning October 15 through December 7, you can make critical changes to your health insurance to ensure you’re receiving the best coverage at the best price.

For people with type 1 diabetes (T1D) on Medicare reviewing your options is even more critical this year. Be sure to sign up for a Part D plan that will cap your insulin costs at $35/month. Across the country, there are more than 2000 plans being offered that charge no more than $35/month for each insulin prescription, with many charging even less than that.

Note that not every plan will offer this benefit, so be sure to find a plan that does and sign up for the benefit before open enrollment ends.  When reviewing your options, make sure to include insulin and any other drugs taken on the drug list to see plans that offer $35/month insulin.

Some important specifics to keep in mind:

For a comprehensive look at T1D and insurance, visit our Health Insurance Guide.

These are tough times for so many families across the United States.

While no one wants to think about losing their job, it is better to be prepared. This is especially true for the type 1 diabetes (T1D) community, for whom continued health coverage is critical.

What to do immediately

Typically, when you lose employment, your health insurance coverage extends through the remainder of the month, or through some period of time after you cease actively working. You should take advantage of this window to refill prescriptions for insulin and injection supplies, as well as glucose test strips, CGM or insulin pump supplies.

Ask your provider for prescriptions for a 90-day supply for any of these items and have them filled within the window during which you still have coverage. Many insurers are making it easier for people to obtain 90-day fills of their medications and supplies. You should check with your insurer about the specifics of your situation.

Even while still insured, you should take advantage of the insulin manufacturer coupon programs listed on Breakthrough T1D’s Help with Costs page. Before your insurance ends, you should contact the patient assistance programs listed on our Help with Costs page that are associated with the insulin that you take and begin the application process. Typically, you can get free insulin through these programs if you are uninsured, but the application process can take time. Try to start applying before your supplies actually run out.

Explore other cost-saving methods:

These are difficult times.

Please find more information about addressing insurance coverage loss, as well as ways to reduce your T1D prescription and insulin costs in our Health Insurance Guide.

Will we be OK?

Our colleagues at Beyond Type One interviewed an insulin-supply expert at the Eli Lilly and Company about how the supply chain works, if we should we worry about insulin running out and what to do if you can’t afford your refill. We share their work as part of our joint effort to disseminate good information as quickly as possible to our T1D communities.  

So, how does the supply chain work?

“We manufacture Lilly insulins twice a week, every week. Then, we fill up trucks that go to wholesalers. Those wholesalers have really big national warehouses. They load up from those big national warehouses, and they drive trucks to the regional or more local warehouses.

Those local warehouses are the folks who keep insulin on the shelf in the pharmacy. And the process of going from a regional warehouse to a pharmacy in your neighborhood is one to two days. Typically, the whole process can be as short as five days. We have a couple of wholesalers that are really close to us. Some of the wholesalers that are a little farther away, maybe 10 days to two weeks. But that’s why they all have these regional warehouses, because you’ve got to have medicine that gets to people quickly.”

In press releases on March 3rd and March 24th, Lilly said that there should be no disruption to the insulin supply chain—how can you be sure?

“So there is a lot of uncertainty, right? And I think that a lot of people are going to say that they’re uncertain even about what different companies are promising to them during this time. But I can tell you that, personally, for myself as well as from the company, we are very, very certain. And right now we do not anticipate any disruption in our ability to make your insulin.

Hypothetically, if everybody in the United States ordered a three-month supply of Lilly insulin all at once, would there still be enough?

“To answer your question directly, it would not cause a shortage of insulin, but it would cause some local pharmacies to be out of stock and maybe even some of those regional warehouses to need to restock from the big national warehouse.

Let’s say that everybody went in and tried to order three months instead of one month. Well, obviously the first couple of people in line are going to be able to do that. The rest are going to have to wait one to two days…as insulin gets back on the shelf in your local pharmacy.

And if you let the system work, it’s designed to work for you. I think some of the places that are running into more issues is when your healthcare professional or yourself don’t give the pharmacy a head’s up that you’re going to be picking up additional insulin. So, if that’s the case for you, have your doctor write the prescription, send it into the pharmacy and give the system a day or two to react.”

We are having people report pharmacies are out of insulin. Can you explain how this happens and how long somebody might need to wait?

“You guys have been hearing it from your community members, Lilly has heard and responded to a couple of requests specifically where pharmacies are saying that Lilly insulin is on back order or the manufacturer is out of stock. We did address this in the press release, but just to be clear and so everybody hears it out loud, there is not a single Lilly insulin that is on back order and there is not a single Lilly insulin that we are out of stock of.

Let’s pretend I’m a pharmacist in your neighborhood pharmacy, and because my system has been checking in, and it knows who fills and how often they fill, it knows that I’m going to have five people who are supposed to come in and fill their 30-day insulin supply today. So a couple of days ago, the computer ordered enough insulin for all five of the folks and whatever they needed for the month.

Customer one comes in and says, “Hey, I’m here to pick up my 30-day supply.” Go to the fridge, it’s on the shelf. Customer two comes in and says, “I normally pick up a 30-day supply, but I’m actually going to pick up 90 days today.” The pharmacist goes to the fridge, he has plenty of stock on the shelf, gives all 90 days to customer number two. Customer three comes in, “I’m here for my regular 30-day supply.” Pharmacist goes to the fridge, it’s on the shelf, not a problem. The difference is going to be what customers four and five are going to hear when they say, “I’m here to pick up my 30-day supply.” The pharmacist is going to say, “Oh, I’m temporarily out of stock of insulin. It’s going to take one to two days for me to get it in. We’ll give you a call when it’s full.”

The reason that they would say the one to two days is because they’re never going to over-promise on that. So, it could be on a truck that could be there in hours or a day, but they’re going to tell you it’s going to be one to two days.

The other thing that’s happening is that awesome game of telephone. So, somebody hears, “We’re temporarily out of stock, I’m going to order it,” then it becomes, “Well the pharmacy is out of stock” and you hear it in a couple of different places because this is happening regionally. And then it turns into, “Manufacturers are running out of stock of insulin” which is not the case at all.”

So from the time your pharmacy tells you, “We’re out of stock, we need to reorder,” it should be a maximum of one to two days—is there any reason why it might take longer?

“The only reason why it could take longer is if this were happening to a critical mass of pharmacies that are all based out of one regional warehouse. But again, remember it doesn’t take a pharmacist to actually place every single order. So, as inventory starts to go down, all of the computer systems are talking, and by the time that regional warehouse would likely be out of stock, there’s already trucks on the way to make sure that there’s more insulin there.”

What kinds of resources is Lilly going to be providing to those people who are maybe having a harder time or just recently for the first time ever having a hard time getting a hold of their insulin?

“It’s a big concern and it’s a concern that Lilly’s been focused on with insulin affordability for several years now. So, we have a lot of solutions that are currently out there in the marketplace. I know that there’s some extra concern because of the pandemic, but you don’t need the excuse of the pandemic, if you can’t afford one of your Lilly insulins, please call the Lilly Diabetes Solution Center.

(You can call the Lilly Diabetes Solution Center at (833) 808-1234, Monday through Friday, 9 a.m. to 8 p.m. Eastern time.)

We’re going to have a live (Lilly representative) walk you through which solutions are the best for you. We have solutions for commercial patients, we have solutions for uninsured, we have solutions for folks who are in Part D. We can get you connected with Lilly Cares to see if you qualify, and we can also connect you to one of the 100s of clinics we partner with across the country.

It’s not just if you qualify for getting free Lilly insulin, this also helps you get your supplies and access to social workers and also discounted rates on healthcare providers, making sure that you’re taking your insulin the right way to keep you as healthy as possible. So please call. If you’re currently on a solution and it’s for your commercial insurance and you’ve recently lost your job for whatever reason, whether it’s because of COVID-19 or seasonality of employment, things like that, it doesn’t mean that those aren’t going to work for you anymore. It just means we need to find the solution that’s most appropriate for your current situation.”

Is there anything separate that you’d recommend for our community members outside the United States or a place we can direct them to?

“Anyone can call the Lilly Answers Center (1-800-545-5979) and they can triage to the most appropriate resource. Different countries are going to have different programs set up and obviously different federal poverty levels and things like that. Anyone who’s in the United States or any of the territories (Puerto Rico, Guam, etc.), it’s the Lilly Diabetes Solution Center—give us a call.”

Is there anything else that you or Lilly Diabetes would like to say to the diabetes community at this time?

The quick bullets to it are: one—your health and safety are of utmost importance. And if what you need to do to stay healthy as directed by your doctor as to pick up additional quantities, have your doctor put that prescription in the system and let the system react and work for you. It’ll happen in as little as one to two days. The second piece is whether you pick up on a 30-day cycle or a 90-day cycle, please be confident.

We are confident that we will have Lilly insulin manufactured and available to your pharmacy at whatever schedule you decided to pick it up. We’re here, we’re confident and we’re making your insulin 24 hours a day.

 

As many of you know, UnitedHealthcare (UHC) has limited insulin pump choice for children and adults through a new policy called a preferred pump agreement. Breakthrough T1D believes that consumer choice is essential for the T1D community, and that an insurance company should never stand between a patient and doctor.

To that end, we have been acting on numerous fronts to change UHC’s policy. We’ve met with top executives to make our case, and formally communicated our position to UHC’s CEO. We’ve called upon allied organizations to weigh in. And, we’ve asked you — the T1D community —  to share your story. Since February, tens of thousands of you have emailed UHC and spoken out on social media. Thank you to all of you that have taken a stand on this important issue.

Our fight is not over until they change their policy. If we give up, this policy will remain and other health insurers may adopt similar policies. We cannot let that happen. We will continue to tell UHC, their board, and executive team why pump choice is essential. Please read the letter from Breakthrough T1D’s new president and CEO to UHC, and take action here.