Health insurance hurdles 101: insulin + diabetes supplies

Editor’s Note: Beyond Type 1 believes that people who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to pay for insulin, visit our Get Insulin resource page.

Congratulations, you have health insurance! But your diabetes supplies and medications are still expensive and the specific brands your plan covers change year to year. What’s a person with diabetes to do? We know that just having insurance certainly doesn’t solve the cost headaches, and often presents a whole other set of issues to navigate. This resource is designed to help people WITH health insurance navigate some of the challenges that may arise while living with diabetes. Some of it is in your control, but a lot of it is out of your control, so here some suggestions for navigating a complex healthcare system with a chronic condition.

If you are having trouble obtaining insurance or supplies, please see our other resources for those specific scenarios:

This guide uses health insurance terminology that can be found in this glossary.

My insulin is not in my formulary.

Most insurance plans price their prescription drugs through a system called a formulary. These are most often placed into tiers – usually a 4 level system that dictates your copay or coinsurance – by price of the drug. Due to the complexities of insulin pricing, your pharmacy plan will have a negotiated rate with one of the insulin manufacturers, and that is the drug that will be in your formulary at the covered rate. These negotiations happen every year, so even if your preferred insulin type – let’s say Novolog insulin made by Novo Nordisk – is covered one year, the next year it may switch to an insulin that is considered to be interchangeable – like Humalog insulin made by Eli Lilly – even though it is not interchangeable for everyone.

Here are some things you can do:

  1. Call your insurance provider to discuss what medications are on your formulary and the cost to continue using your usual insulin.
  2. Call your doctor to discuss switching to the covered insulin and what that would entail for your quality of care. In many cases, switching brands would be equivalent to buying Charmin vs. Cottonelle toilet paper: it is a different brand of the same product with the same effectiveness.
  3. If you find that your diabetes-related quality of life has diminished due to the change in insulin, first call your doctor to determine next steps for your health. Make a care plan you can stick with to keep yourself healthy. If the insulin is the issue, they can identify that and work with you to appeal your insurance.
  4. Appeal to your insurance. Warning: this is a process that takes time and patience. You will need a letter of medical necessity demonstrating that your quality of care is worse on the formulary insulin than on your previous insulin. You will need to work with your health insurance, pharmacy provider, and physician in order to process all of the necessary information. This is a time to be resilient and advocate for yourself; you do not need to use a treatment plan that is not working simply because the insurance says so. Keep at it, and you may succeed.
  5. Speak with the people who choose your health insurance plan. If you are on an employer-based health insurance plan, you may want to have a conversation with your benefits manager (usually in HR or a business office) to request that your insulin be on the formulary list in the coming benefit year. If your employer does not know what you need, they cannot accommodate it, so, again, this is a time to advocate for yourself. If you are signing up for an Affordable Care Act plan (i.e. through Healthcare.gov), read all of the literature to verify that your medications are covered BEFORE you finalize the insurance purchase.
  6. If you cannot afford the insulin that works best for you, you are actually in a decent position! Because you have health insurance, you automatically qualify to use copay cards, which can bring your monthly copay down to as little as $0 per month. See the Get Insulin guide for more details.

Why are my insulin pump/continuous glucose monitor (CGM) supplies so expensive?

There are two components of health insurance coverage: medical coverage and pharmacy coverage. Pharmacy covers prescription medications. Medical covers physician visits, tests, hospitalizations, and more, including a category called “durable medical equipment” (DME).

CGMs, insulin pumps, and insulin pump supplies are considered DME, therefore they fall under the medical plan rather than the pharmacy plan (with the exception of the Freestyle Libre CGM that falls under pharmacy benefits and the Omnipod insulin pump that can be billed through either channel. Dexcom CGM supplies may also fall under pharmacy for some people).

Because they are billed through the medical channel, you must first meet your deductible and then pay your coinsurance on these supplies until you reach your out-of-pocket limit. This can be a prohibitively burdensome cost, particularly for those with high deductibles, but can remain prohibitive even once your deductible is hit.

What can you do?

  1. Plan ahead. Consider trade-offs you are willing or able to make. Speak with your doctor – you may only be able to afford either insulin pump or CGM supplies, and your doctor may be able to help you decide what is best for you.
  2. If you have a High Deductible Health Plan (HDHP), maximize your Health Savings Account (HSA). This is pre-tax money you set aside from your paycheck that is yours to use for healthcare expenses for the rest of your life. Since your HSA balance rolls over year-to-year, you can use this type of account to set aside pre-tax dollars as your savings for your portion of the healthcare expense. Ensure you are taking advantage of funds your employer provides to your HSA (not all do, but some do, and if you’re not sure it is worth asking).
  3. If you are able, choose a PPO plan rather than an HDHP plan. This allows less of a front-end cost to hit you all at once, provided the plan covers the brand of insulin pump or CGM you are trying to get. Which leads us to…

Ok, so I know that my pump and CGM are considered DME. The one I want STILL isn’t covered.

This is a more complicated one. Due to preferred provider negotiations between insurers and device manufacturers, the device that you have researched and decided is perfect for you is not covered by your plan. An example of this – Beyond Type 1 and JDRF have been advocating for United Healthcare to include other brands of insulin pumps in their plans after they announced a preferred provider relationship with Medtronic (more on that here).

If you are facing a device denial, here are some suggestions for a course of action:

  1. Be the CEO of your device prescription. Work with your physician, diabetes educator, local device sales representative, and insurance company to understand what your options are and what the coverage is like so you can make an informed decision. You will need a prescription and a letter of medical necessity in order to get the device.
  2. If the device you want is not covered by your insurance plan and you still want it, you will face a denial. For a guide on how to appeal a denial, click here.
  3. It is best if you can provide clinical data to support your appeal. For instance, a demonstration of time in range or A1C that is improved with the treatment you want vs. the treatment your insurance will cover. Work with your doctor to build your case here.
  4. If you pay out of pocket as you navigate the bureaucracy, you run the risk of never being reimbursed, so make sure you have spoken with all of your providers (the companies and physicians) before putting down your own money.

The world of health insurance is its own complex web of policies and bureaucratic nonsense. It takes persistence and perseverance to advocate for yourself and what you know is right. You should always be the expert on what your plan covers and what you need to take care of your own health, and it takes that CEO mentality to negotiate with your providers to get everything you need. You already manage your health on a daily basis; you can do this, too.

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Look how quickly they were able to indict the chicken execs for price fixing…

https://www.wsj.com/articles/chicken-industry-executives-including-pilgrim-s-pride-ceo-indicted-for-price-fixing-11591202113#:~:text=Jacob%20Bunge,-Biography&text=The%20chief%20executive%20of%20one,a%20continuing%20criminal%20antitrust%20probe.

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This year my plan stopped coverage of novolog and now has humalog as preferred.
However I started using the Novolog $99/3 vials offer, as “cash pay”.

https://www.novocare.com/insulin/my99insulin.html

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I was on Humalog last year and it was covered. My insurance changed and so did the formulary to where only Novolog was covered. Now I’m on Fiasp and they paid for that without question. I don’t know if Fiasp is technically on the formulary as we hit our Prescription Deductible and Max Out of Pocket for our prescriptions a couple months ago. So now through the rest of the year all of our prescriptions (including my Pods and G6 stuff) are covered at 100%. :slight_smile:

Didn’t they pass something that made it $30 per bottle across the board? Someone told me that. Mine has been for a while, but that was originally via Eli Lilly

I remember hearing something like that back when this pandemic started.

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@mohe0001 and @EGreen76:

Yes, I believe the EliLilly has their $35 a month Covid19 special … and, starting in 2021, Medicare will cap out of pocket Part D expenses at $35 a month.

Stay safe!

John

I’ve been thinking about it. Its actually really complicated how this works. People ask me questions about it all the time, and I am never able to answer very well. Its because there are a bunch of things that people did (kinda) independently to make insulin cheap again. The things that I am aware of are:

1.) The State of MN sued the insulin manufacturers for price fixing (2019)
The was the 1st thing that happened that dropped my insulin to $35. That was a concession by Eli Lily within the state of MN. No formal agreement that I am aware of. The manufactures just did it, for Humalog users, in MN for a 1 year period in response to that lawsuit.

1.5.) A number of other states implemented individual legislation (Colorado capped at $30. May be also Utah?). Individuals introduce additional (kinda ineffective) legislation in MN, but that helps rattle the industry.

2.) The following year Eli Lilly might have expanded that $35 max out of pocket nationally (2020) ???

3.) Medicare caps introduced by the Feds (May, 2020)
[EliLilly has their $35 a month Covid19 special … and, starting in 2021, Medicare will cap out of pocket Part D expenses at $35 a month.]

So, this is all getting really complicated to keep track of how this was accomplished. We ought to write it down. I forget the details as time passes, but I think it went something like this. You guys will remember additional stuff.

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@mohe0001:

That is a nice summary. Certainly there is almost an intractable number of combinations: 50 states, multiple suppliers, Medicare, Medicaid, an almost limitless number of insurance companies and plans … not to mention different coverage for us Medicare types depending on whether you pump or use MDI. It makes my head hurt …

Have a good and safe weekend.

John

Not much help for those of us who use insulin made by other companies, such as Novolog or FIASP from Novartis. It really should about both cost and choice.

@William7 et al:

Here is a fairly recent article (April 2020), that appeared in diatribe that list all of the states that have passed or are considering insulin out of pocket cost limits:

https://diatribe.org/eight-states-pass-legislation-place-caps-insulin-price-five-more-await-ruling

While many of these are not yet in effect, momentum is clearly building.

Also, near the bottom of the above article is a link that includes a listing of various manufacturer-specific discount cards and other programs. While not all of these are available to everyone, hopefully a few folks can save some money.

Stay safe.

John

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John_S2,

Thanks. My state isn’t on the list. FIASP works too well to give up (fewer/milder hypos and lower average BG). So I’ll likely end up buying from Canada, unless I can find a pharmacy that will bill Medicare Part B after I go on Medicare next year.

William7

Turns out that the protests here were pretty successful. I didn’t expect that because it seems like nothing ever succeeds. But, diabetics have had a lot of successes. It doesn’t come fast and it isn’t simple, compared with starting things on fire. That works like a charm. But, I don’t think there are enough diabetics to do that. We do control a lot of healthcare system money, though.

maybe I should post else where… went from a state insurance to still a state insurance but lousy plan. Now, I have to pay 443 bucks on sensors… I’m wondering if I can get help for this anywhere. Need to call insurance… Insulin went from $25 per bottle to $100 per bottle. Feel like I am getting screwed. Any advice… thank you.

For novolog, levemir, tresiba, fiasp and others, check out this $99 offer, used WITHOUT your insurance. $99 for 1,2 or 3 vials per 30 days.

https://www.novocare.com/insulin/my99insulin.html

I am using this and chose a pharmacy that is NOT my regular one used with insurance. This helps to insure they run the claim correctly.

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The best I’ve found for Dexcom G6 supplies (you didn’t say what you were using) is the pharmacy at Sam’s Club. You have to pay a little extra the the “plus” membership, but I save more than that on a single Dexcom stockup run. I pay $125 per transmitter (instead if 350-something) and $284 per box of 3 sensors, which I restart to get about a months worth of wear each. Works out to about $137 per month.

Add that to @MM1 's suggestion, and you’re already better off than with your insurance.

thanks I’m on humalog and lantus, so I don’t think that MM’s brand of insulin are relevant to me. Am I wrong. Also thank you for the tip on Sam’s club. Maybe I will do that. thanks.

Humalog and novolog are very similar, and I’ve been switched several times by my insurance. But I prefer Novolog since it seems quicker and catches my post meal rise better. But my insurance covers Humalog, so was glad to find the deal for novolog.

I know there is a lower cost generic of humalog that is “bio-similar”, and lower cost. You could check into that.