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Dealing with insurance coverage is one of the biggest headaches of living with a chronic illness like diabetes.

These days, it’s even more nerve-wracking with all the political back-and-forth about healthcare policy, leaving folks with “pre-existing conditions” unsure how our coverage will be affected.

With the nationwide open enrollment period open between October and December for Medicare and many employer-based insurance policies, this is a key time for many of us to make insurance decisions. And it’s no picnic trying to review options… we know.

To offer some assistance, we compiled the following list of tips on how to get satisfaction from your insurance company — things they often don’t tell you but are important to know when dealing with them. We’ve included wisdom from some key diabetes advocates.

Remember that there are hundreds of different plan combinations out there, so the “your insurance may vary” rule always applies when it comes to coverage specifics.

Let’s start with Medicare, which is the most common plan for people ages 65 and older, as well as those with certain health conditions.

Medicare can be quite complicated. It’s essentially a set of government programs for adults 65 and older. Even if you’re not yet of Medicare age, it’s critically important that people with chronic health conditions take note of what’s covered by Medicare and Medicaid (governed by the Centers for Medicare & Medicaid Services, or CMS).

These policies set the benchmark for what private payers will be doing in the future. The saying is: “As Medicare goes, so go the private payers.”

It’s also key to pay attention to Medicare because we’re all living into our golden years these days and will eventually be in their jurisdiction.

The complex Medicare coverage system can be rather confusing to the uninitiated. It’s all under the umbrella of CMS, and there are multiple parts with corresponding letters attached:

  • Part A is for hospital and related services, like nursing or hospice care.
  • Part B is for medically necessary and preventive services and health coverage, like lab tests for diagnosis or treatment. This is also the section where some insulin is covered, if the beneficiary is using an insulin pump for delivery.
  • Part D is for prescription drug coverage.

Those are the three main parts of Medicare, but there’s also Part C, or Medicare Advantage, which is provided by a private insurance carrier. Part C covers all the same services as original Medicare coverage (parts A and B), as well as some supplemental benefits.

Not everyone has an Advantage plan, and like everything in the land of insurance, the particulars of your Medicare plan coverage may vary.

“If I could speak to every person with Medicare who is living with diabetes, I would strongly recommend they check their medication costs annually,” says Greta Parker, an insurance broker in California who has a young daughter with type 1 diabetes.

“A plan that may be great in 2020, may be the exact opposite for 2021. This is true for people that have all kinds of different Medicare coverage plans,” she says.

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Parker has some key tips for those investigating Medicare coverage:

Drug costs. Ask about the full cost of a particular medication. Medicare vendors often cite only a partial deductible cost or copay, rather than the full cost for the year and the rest of the drugs they may be taking.

Preferred pharmacies. Medicare Advantage or stand-alone Part D plans have preferred pharmacies, but most people with diabetes (PWDs) don’t pay attention to that. They stick with their own pharmacies.

They don’t realize that preferred pharmacies usually offer them less expensive copays/coinsurance and lower retail costs for nonprescription medications too.

“It’s best to not become too attached to your pharmacy,” Parker says.

Diabetes devices. Coverage for insulin pumps and continuous glucose monitors (CGMs) can be tricky to obtain for Medicare beneficiaries, since it sometimes depends on whether the person lives with type 1 or type 2 diabetes, and whether insulin is used.

When insulin is used in a device, it’s covered by Medicare Part B under the durable medical equipment (DME) category, which makes coverage for the devices easier to obtain.

What patients pay for insulin under Medicare Part D varies based on their particular plan. Also, many people have supplemental, secondary insurance plans that impact the total cost they’re responsible for.

But the new Senior Savings Model announced in March 2020, which will take effect for 2021 plans, is important to know about.

This new Medicare $35 insulin copay cap impacts all Part D coverage stages, meaning patients will not be required to pay a large deductible first, or the often higher costs traditionally levied at different stages throughout the year.

Note that getting these savings is not automatic, it’s optional. So PWDs need to pay attention and actively opt in.

When signing up for coverage, Medicare members will need to choose one of the new “enhanced” plans to get the savings, whether it’s a stand-alone prescription drug plan or a Medicare Advantage plan with optional prescription drug coverage.

Note also that the insulin cost savings is not included in Medicare “basic” plans, which typically don’t include the best coverage or savings offers for prescriptions but have a lower premium.

To date, more than 80 insurers have agreed to participate with a total of 1,750 different drug coverage plan options. To view which plans are on board and which insulins are available, see this spreadsheet of participating plans compiled by the CMS Innovation Center.

The American Diabetes Association (ADA) has praised this Medicare $35 insulin copay cap as a beneficial step forward that could be setting the stage for a wider, across-the-board policy change at the federal level.

“While there have been 13 states which have enacted copay capping legislation across the country, this is the most prominent demonstration created on the topic at the federal level,” said the ADA’s VP of Federal Payment Policy Laura Friedman.

“If CMS can show significant rates of participation amongst plans year after year, and additional cost savings for Medicare beneficiaries taking insulin, among other things, then CMS may propose to cap the cost of insulin at $35 per month in rule-making.”

It can all be a lot to take in, and it’s complicated stuff.

You can read all the details on the Medicare $35 insulin copay cap in our DiabetesMine guide.

We’re also thrilled to see a number of community resources emerge to help PWDs understand their Medicare choices, including this step-by-step guide for those Making the Switch to Medicare from our friends at diaTribe.

For individuals curious about plan options in their state, visit the plan finder tool on Medicare.gov to search for plan options. The plan finder tool includes an “insulin savings” filter to help beneficiaries identify plans that offer capped out-of-pocket costs for insulin.

Roughly half the workforce in America has health insurance from the big private insurers. In fact, over 50 percent of insured people in the United States have coverage through an employer-offered plans, and the details on these vary greatly.

During open enrollment — or anytime really — it can be quite a chore to try to sort through how your coverage works in terms of deductibles, copays, drug benefits, and more.

Here are some things you can do as a PWD to ensure that you get what you need for your diabetes care:

Search online. This sounds like a no-brainer, but you can often find insurance companies’ medical policies online for a specific drug, device, or therapy just by Googling it. Look for language outlining the criteria they use to determine whether or not you’re eligible and covered.

As a non-doctor, of course you won’t have access to the “physician’s only” portal on your payer’s website.

When using Google, just type in your payer’s name (Aetna, BCBS Virginia, etc.), the name of the treatment category (subcutaneous insulin infusion, insulin pump, continuous glucose monitor, SGLT-2, etc.), and the words “medical policy.”

See what pops up. We found that in 2020, you’ll usually hit the specific policy within the first page of results.

Ask three times, then demand a supervisor. When you have an important question, chances are, you’ll end up calling the insurance company at least three times and get three different answers — sometimes even from the same person.

Often, payers have different levels of access to records for various people in their customer service and other departments. So the rep you’re talking with may not just be uninformed or elusive, he or she might not be able to see all the notes and different screens in your file.

Be assertive and insist on going up the chain of authority to speak with someone who has access to all the relevant info and decision-making power you’re in need of.

Publicize it. Not getting the answers or service you believe you should? Use social media to voice your gripes. Most of the insurers and distributors have Twitter accounts (for example @BlueShieldCA), so Google their Twitter handle and then post some notes about your experience.

You may be surprised how quickly that gets attention, pushing your case through from the payer’s customer service department to their marketing and even executive levels sometimes.

Don’t be afraid to write directly to the head honchos, including the CMO or CEO. That can also get prompt attention.

Prove it. Know going in that you’ll have to show proof of everything. If you test your blood sugar six times a day and need adequate test strips per month, you’d better have glucose testing logs or downloaded data showing that you really test that often.

Trying to get coverage for a CGM? Better be sure you have a history of your highs and lows to demonstrate the need for this expensive device. Make sure you work with your doctor so that all the paperwork is in place in advance of your request. This also helps in an appeal, when you try to get a decision reversed based on the payer’s own stated criteria.

Yes, you do have diabetes. Believe it or not, you may even have to provide evidence of this basic notion, which you can only do by keeping track of doctor’s visits, diabetes data logs, and in the case of type 1 diabetes, a C-Peptide test showing that your body does not produce insulin.

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Track your doctor’s notes. It’s important to get access to your doctor’s notes as part of your arsenal of proof, as these days, insurers often ask patients to provide documentation showing that they actually go to their doctor regularly.

The mentality is: “Why should we give you an expensive device if you’re not even seeing your physician regularly?” Be sure to have your doctor take copious notes on any low blood sugar episodes you experience, because this can also help show a future need for obtaining or maintaining the D-device you want.

Find a health advocate. Insurance companies often employ their own specialized “health advocates” whose job it is to walk through your file and advocate for you (for example, Blue Cross of Michigan).

It never hurts to have more people backing you up, especially someone who works on the inside of the company you’re lobbying. So be sure to ask about your payer’s health advocate services.

Insurance companies love to dish out claim denials because they know that’s a huge deterrent. They expect that most folks will simply accept the denial and either skip the treatment or pay out of pocket.

But the Government Accountability Office (GAO) in 2011 estimated that “39 to 59 percent of appeals resulted in the insurer reversing its original coverage denial.”

If you decide to appeal, be sure your doctors are engaged in the process with you because insurance companies expect to deal mostly with our doctors during an appeal process rather than patients directly.

Here are some important things to know about the appeal process:

  • “Peer to peer” review. Within a specific window of time during the appeal process, your physician can request a peer review, meaning they can call in and speak with a fellow physician
    at the insurance company to discuss medical necessity.
  • Treatment exceptions. If the issue you’re facing is that your treatment is no longer on the formulary list (covered items) for your pharmacy, employer, or insurance plan, you have similar recourse. Your physician can appeal for a “continuity of therapy” exception, which can apply to an out-of-network doctor you may want to see as well. If you do try the covered alternative (like a generic drug) and you have a negative reaction, you may have a stronger case for continuity of therapy.
  • Tell your story. Personal accounts do make a difference, especially if provided by your doctor. Write up a letter explaining why it’s so important for you to test your glucose many more times a day than the typical 3 strips per day they want to cover. Or explain from a quality- of-life standpoint why the insurer should be paying for a brand-name drug instead of a generic or different medication. This would ideally be with your doctor’s agreement that the alternative is not “medically equivalent” as the insurance company may insist. If the issue is a CGM, describe how glucose lows and/or hypoglycemia unawareness affect your health and well-being.

Some healthcare professionals have also posted suggestions about trying the “medical hack” of calling your insurance company and demanding information about their HIPAA (Health Insurance Portability and Accountability Act) privacy policies.

The idea is that most insurance companies will opt to simply cover the cost of the denied claim rather than having to dig in and provide complicated paperwork to protect themselves against possible legal action.

You can find other helpful info about navigating the health insurance process when you have diabetes in online guides from JDRF and the ADA.

If you have diabetes, you’ve surely heard about the huge issue of “non-medical switching,” which is when an insurance company switches the covered brand of medication or treatment without consent from you or your doctor for their own financial reasons.

This may mean their health plan members are forced to pay a higher copay amount or even the full out-of-pocket cost for the now “non-preferred” medication brand.

This is happening more and more often on the diabetes medication and device front, something many of us have endured through the years with glucose test strip coverage.

Thankfully, there are growing resources out there to help PWDs push for a “Prescriber Prevails” focus, meaning that decision-making remains between physicians and patients, rather than insurers or cost-focused third parties.

An initiative spearheaded by the nonprofit, industry-sponsored Diabetes Policy Collaborative, supported by numerous diabetes organizations and industry folk, is working to address this issue at both the state and national levels.

See this online video and resource to learn more.

Navigating health insurance is a huge job that can sometimes feel like half the battle of living with diabetes.

To stay informed as PWD, it’s important to keep your eye on Medicare, which leads the way in decision-making and will inevitably become your insurer one day as you age.

If you’re privately insured, be prepared to put up a fight for what you need.

Be sure to:

  • partner closely with your doctor,
  • keep detailed records, and
  • don’t back down easily if you’re denied of what you need.