Getting Medicare with Type 1 Diabetes

Simply put, Medicare is federally-subsidized health insurance for Americans who are 65 years old and older, some people with qualifying disabilities, and those with end-stage renal disease and amyotrophic lateral sclerosis. It provides health insurance, typically after people retire and are no longer eligible for employer-sponsored health insurance plans. This is different from Medicaid, which is a federal and state partnership, offering health insurance to low income residents of any age.

The program came into existence in 1965 with Title XVIII of the Social Security Act, signed into law by President Lyndon Johnson as a way to better ensure that Americans could age with dignity and receive proper medical care without going into poverty, as was common at the time. The program is extremely popular, and as of 2020, nearly 63 million Americans are insured by Medicare.

Health policy in the United States is a convoluted web, but Medicare can mostly be broken down into three categories:

• Medicare Part A: offers coverage for inpatient hospital stays, limited care in a skilled nursing facility (SNF), hospice and palliative care, and some home health care services
• Medicare Part B: offers coverage for outpatient care, doctors’ visits, preventive services like physicals and check-ups, and certain medical supplies
• Medicare Part D: offers coverage for shots and regular vaccines, as well as prescription drugs like insulin (interesting to note that the Omnipod DASH insulin delivery system is covered under Part D, rather than Part B, like other insulin pumps)

With Medicare, there are two options for how you’ll receive your coverage. You can either choose:

Original Medicare. This consists of coverage for Part A and Part B. You’ll simply pay for services as you receive them. You’ll first pay a deductible at the beginning of each year, and then for Medicare approved services that fall under either Part A or Part B, you’ll pay just 20 percent of the original cost. This is called coinsurance. If you need prescription drugs, however, you’ll have to add a separate drug plan (Part D).

Medicare Advantage. This is a good option for people who need regular prescription drugs. These are “bundled” plans that cost a bit more money, but offer coverage for Plan A, B, and D. Sometimes choosing Medicare Advantage is known as Medicare Part “C.”

If you live with T1D, you’ll definitely want to opt for a Medicare Advantage plan, as this will be crucial to help you pay for your prescription drugs. Choosing Original Medicare will not cover prescription drugs.

There are many different Medicare Advantage plans to choose from. They may also offer additional coverage that Original Medicare does not cover, such as vision, hearing, and dental care. Medicare Advantage plans must follow Original Medicare’s coverage guidelines, and they must tell the beneficiary of any changes to their coverage policy before the start of the next enrollment year.

If you choose Original Medicare but want extra coverage, you can purchase a Medigap plan to help supplement your coverage. It can help cover the extra costs of things like coinsurance, copayments, and deductibles to make your coverage more affordable.

All Medicare benefits are subject to medical necessity. There are also many websites designed specifically for people with diabetes to help them make sure they’re making the best coverage decisions when they age into Medicare.

Medicare has also developed a “plan finder,” which allows you to search for and compare different Medicare prescription drug plans to see what will work best for you.

Medicare coverage starts when you turn 65 years old. However, you will need to enroll to gain coverage. All Americans who have been legal residents of the United States for 5 or more years and are 65 and older are eligible. An initial enrollment period begins 3 months before you turn 65, and lasts until 3 months after you turn 65. Once you’re enrolled, your coverage will start on the first of the following month. You can learn more about the deadlines for enrollment here, but unless you’re working and have health insurance through an employer’s sponsored plan, you’ll want to sign up as early as you can to ensure that you’ll gain coverage the month you turn 65.

After your initial enrollment year, if you want to make changes to Original Medicare, you’ll have to wait until the Open Enrollment period, which runs each year from October 15 to December 7, with changes to coverage going into effect January 1 of the subsequent year.

Medicare Advantage has its own Open Enrollment period, from January 1 to March 31 each year, during which you can switch to a different Medicare Advantage Plan or switch to Original Medicare (and join a separate Medicare drug plan).

Melissa Rapp, a social worker who specializes in gerontology in Denver, Colorado, and has lived with T1D for over 30 years, tells DiabetesMine, “It’s vital for the health and safety of older adults with diabetes to have affordable access to diabetes management technology, like a continuous glucose monitor (CGM). We know as you age with a chronic illness, the likelihood of co-occurring physical and/or mental health conditions increases.”

Rapp continues, “CGMs not only offer incredible data to manage diabetes, but they also bring a sense of relief for those who may live alone or in isolation [in old age]. Access to equipment like a CGM should not be limited simply because you are aging and have transitioned from private health insurance onto Medicare. It should also not become out of reach financially for those same reasons.”

Contrary to common belief, no part of Medicare pays for all of a beneficiary’s medical costs, and some costs and services are not covered at all. Many services can be greatly reduced in cost, however, especially if you apply for the “Extra Help” program.

Similar to private insurance and employer-based health insurance, to have something covered by Medicare, you’ll need to contact your primary physician to receive a prescription, and then it will be run through your Medicare insurance to see how much of the cost they will cover.

For medically necessary prescriptions like insulin, insulin pumps (including Insulet’s Omnipod), and CGM supplies, coverage is usually good, but the costs can still be burdensome for many. This is important because 1 in 3 Medicare beneficiaries has diabetes, and over 3.3 million Medicare beneficiaries use one or more types of insulin. With the insulin pricing crisis in America, 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.

Total Medicare Part D spending on insulin increased by 840 percent between 2007 and 2017, from $1.4 billion to $13.3 billion, according to the Kaiser Family Foundation.

Under Medicare coverage, home medical supplies categorized as “durable medical equipment” (DME) such as CGMs and insulin pumps are covered under Medicare Part B, whereas insulin would be covered under Medicare Part D, the prescription drug plan.

Due in large part to national advocacy efforts, Medicare coverage for people with diabetes has been improving a lot in recent years.

Most recently, the Centers for Medicare and Medicaid Services (CMS) approved a change in policy to cover those using a Medtronic CGM when used with their MiniMed insulin pumps. Medicare will now cover all transmitters, sensors, and supplies for the Medtronic system — joining nearly all other CGM companies that have been covered under Medicare for years. That change went into effect at the end of February, 2022. However, this does not include Medtronic’s Guardian hybrid-closed loop system.

Additionally, last year, on July 18, 2021, the Centers for Medicare and Medicaid Services (CMS) amended their LCD (L33822) benefit for therapeutic CGMs to cover ALL Medicare patients with intensive insulin therapy (IIT) type 1 OR type 2 diabetes, regardless of the number of times they manually check their blood sugars per day.

CMS, which administers the Medicare program, officially dropped the previously burdensome requirement that a beneficiary needed to test their blood sugar four or more times per day to qualify for a CGM. This was a huge win for people with diabetes.

Maryanne Klinsdale, a Maryland retiree and grandmother of two who has had T1D for nearly 40 years, tells DiabetesMine, “Being able to access my CGM without proving that I test my blood sugar more than four times per day has been such a relief! Anyone with T1D should be testing their blood sugars more often, and using my CGM just makes everything easier.”

The new policy also includes coverage for Mannkind’s inhalable insulin, Afrezza. The agency changed the wording in their policy from “injection” to “administration” to allow for this type of insulin to be covered.

Additionally, under the Trump Administration, CMS and Medicare launched an insulin copayment pilot program, capping the copayments of insulin to $35 per month. The program is part of the enhanced Medicare Part D Senior Savings Model, which over 1,750 stand-alone Medicare Part D and Medicare Advantage plans have applied to participate in, according to CMS.

It is estimated that Medicare beneficiaries who use insulin and join a plan participating in this pilot could see average savings of $446, or 66 percent, for their insulin every year. The pilot is funded in part by insulin manufacturers, who will pay $250 million in discounts over the 5 years of the pilot.

There has been a positive response from Medicare Part D plans nationwide, and CMS predicts coverage in the pilot will eventually be available in all 50 states, Washington D.C., and Puerto Rico. The hope is that the 5-year pilot program will be such a success that it will become permanent.

Frank Barletta, a retiree and boating enthusiast from Patchogue, New York who has lived with type 2 diabetes for 20 years, tells DiabetesMine, “The $35 insulin cap has been a game-changer. I don’t have to limit how much insulin I’m taking, or worry how much my next trip to the pharmacy is going to cost me.”

Barletta continues, “I can simply focus on my diabetes and living well.”

These changes are the result of years of advocacy from patient advocacy groups, physicians, and patients who won’t stop until coverage is comprehensive, quality, and affordable.

Rosanne Ainscough, a Registered Dietitian Nutritionist and Certified Diabetes Care and Education Specialist, who works in Denver, Colorado, tells Diabetes Mine, “I have a patient I’ve been working with for many years who takes two insulin injections a day in addition to some other diabetes medicines. He has been having trouble getting access to a continuous glucose monitor through his insurance. He has a history of hypoglycemia unawareness, but his insurer wants him to be taking at least three shots a day despite his doctor’s pleas for the CGM to help protect him from hypoglycemia.”

Ainscough notes that the improvements in Medicare coverage are laudable and need to trickle down to influence other insurers as well, saying, “There needs to be some flexibility among insurers to consider the whole person with diabetes, not just how many injections they take a day.”

Most people love their Medicare coverage, but that doesn’t mean that it’s comprehensive for people living with a chronic condition like diabetes. If you see a gap in coverage that you want to address, your best bet is to get involved in diabetes advocacy. You will want to find out who your members of Congress are, and make a call to them or write them a letter, telling them all about your life with diabetes, and why ensuring more coverage for medications and supplies on Medicare is necessary.

Additionally, during their August recess, you can visit their office in person (in your home state), to address the situation directly.

You can get involved in patient groups like the Diabetes Patient Advocacy Coalition (DPAC), the Center for Medicare Advocacy, AARP, or Patients for Affordable Drugs. They will often organize fundraising events, marches, and rallies to make their needs known.

You can start a letter writing campaign with friends, or go to the media to share your story about medications and supplies that aren’t currently covered but that you believe should be. There are many ways to get involved with advocacy to start making your voice heard.

If you’re approaching Medicare age and living with T1D, you no longer have to fear that you will lose insurance coverage for your CGM or other devices or supplies. But you do have to be careful about the Medicare plan you choose, and be mindful of rules around establishing medical necessity.

As Medicare does tend to lag in covering the newest diabetes tools and treatments, lending your voice to advocacy can help ensure that policies are up-to-date and every person with diabetes won’t have to launch an individual fight for coverage.