When you have a rare disease, , prescriptions and care plans is difficult enough — figuring out what will (and won’t) cover often adds another layer of stress.
“In many instances, people who are diagnosed with a can face special challenges when it comes to getting the health care they need at a price they can afford,” says Whitney Stidom, vice president of consumer enablement at eHealth, a private online health insurance marketplace.
Many retirees live on a fixed income, so even with coverage, can still take a serious toll on their monthly budget.
“Medicare generally provides coverage for the treatment of rare diseases, with some caveats, helping provide financial protection to enrollees facing a potentially serious health issue,” Stidom says. “However, treatments must meet the criteria of , and experimental or off-label treatments may not be covered.”
Learn more about the types of therapies and treatments Medicare covers, plus tips for maximizing your health care coverage.
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What Is a Rare Disease?
A rare disease is a serious health condition that affects a small percentage of the population. In the U.S., that’s defined as fewer than 200,000 people.
suggests there’s an estimated 10,000 rare diseases affecting roughly 10% of the U.S. population.
“These diseases are often genetic, debilitating and difficult to diagnose,” says Danielle K. Roberts, a Medicare expert and founding partner of Boomer Benefits. “They frequently lack treatment due to low funding and lack of information about the respective disease itself.”
Some examples of rare diseases include:
— Cystic fibrosis
— Ehlers-Danlos syndrome (EDS)
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— Huntington’s disease
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Does Medicare Cover Rare Disease Treatment and Care?
Yes, Medicare covers vital screenings, appointments, tests and other relevant services for rare disease treatment, but there are some potential limitations.
“Medicare can cover treatment and services for rare diseases, but it doesn’t automatically grant coverage based on the diagnosis of a rare disease alone,” Roberts says. “All services, medications and equipment must meet Medicare’s specific criteria.”
For example, original will cover necessary inpatient hospital stays, whereas takes care of doctor visits, and injection therapies administered in an outpatient setting, such as an .
“Medicare’s coverage is really going to be determined by the way rare diseases are treated,” Roberts says. “If there are coverage determinations under the Centers for Medicare & Medicaid Services and the services are (Food and Drug Administration)-approved, Medicare can pay for the treatment needed to diagnose, treat or monitor the health condition — regardless of its rarity.”
But here’s where things get tricky: According to the , more than 90% of rare diseases are still without FDA-approved treatment.
“Because of how coverage is coded, Medicare will likely deny services that are considered ‘off-label use’ or without enough diagnostic reasoning,” Roberts adds.
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Medicare and prescription coverage
Most specialty drugs (also referred to as orphan drugs) are covered through , but they’re often placed on higher-cost tiers, which often means higher out-of-pocket expenses.
“In some instances, a medication may not be included in the plan’s formulary or be subject to rules, such as or step therapy, meaning patients have to jump over additional hurdles for treatments to be covered,” explains Tiara Green, the president of Accessia Health, a national nonprofit organization that provides financial assistance to patients with rare and chronic conditions.
Medicare coverage for genetic testing
About 80% of all rare diseases are genetic. can play a key role in diagnosis — and may help guide treatment sooner.
Medicare covers genetic testing in some situations, but often, it requires the person to already have a diagnosis or a known genetic mutation, Roberts says.
In other words, Medicare generally won’t cover genetic testing for someone who isn’t showing signs or symptoms of a genetic condition. A doctor typically has to deem the test medically necessary for diagnosis or treatment, versus as a screening to evaluate someone’s risk of developing the disease later down the line.
Coverage can also vary by your location.
“Medicare coverage for genetic testing depends on local coverage determinations, meaning approval in one region does not guarantee approval in another,” Roberts says.
Medicare coverage for experimental therapies
For some rare disease patients, can be one of the only paths to new or emerging treatments.
But again, FDA approval is often critical for Medicare coverage, especially when it comes to experimental or investigational therapies and services. Since most of these services have yet to be proven as effective treatments for certain rare conditions, they often don’t meet Medicare’s standards for coverage.
“Newly approved therapies can still face bumps in the road regarding local coverage variations and fitting Medicare’s extremely narrow criteria,” Roberts says.
Still, some medical costs linked to experimental therapies may be covered.
“Medicare beneficiaries diagnosed with a rare disease may in some cases be eligible for participation in clinical trials of new therapies, but coverage for these therapies in a trial setting may not be covered by Medicare,” Roberts continues.
Tips to Maximize Medicare Coverage for Rare Diseases
When it comes to getting your covered for rare disease management, you really need to be your own advocate.
“Medicare may appear comprehensive on paper, but for people living with rare diseases, access and affordability are where the system breaks down,” Green says. “Coverage rules were not built with complex, lifelong conditions in mind, and patients routinely fall through those gaps.”
However, there are steps you can take to make sure you’re getting as many medical bills covered as possible.
— Consider Medicare Special Needs Plans (SNPs). These are a type of designed for people with certain health conditions or circumstances, and they often emphasize care coordination and tailored benefits. If you qualify, you may be able to access disease management programs and more support navigating complex care. In some cases, an SNP may also reduce certain administrative-related hurdles, like prior authorization requirements.
— Understand coverage differences: Medicare supplement (Medigap) vs. Medicare Advantage plans. can help pick up some of the costs original Medicare doesn’t cover, but they often come with higher monthly . Medicare Advantage plans usually have lower premiums and include an annual out-of-pocket limit, but they may have tighter provider networks, require prior authorization for certain treatments and charge higher copays or coinsurance when you get care.
— Submit a Formulary Exception Request. Each Medicare Part D plan has its own formulary, which is a unique list of medications it covers. If a prescribed drug isn’t covered under your plan’s formulary, you can submit a formulary exception request to your plan with your doctor’s assistance.
— Reevaluate Part D prescription coverage options annually. You’re not locked into one plan for life and for good reason — premiums and formularies can change from one year to the next. That’s why it’s so important to make sure your prescriptions will still be covered in the next plan year. If you want to , you can make changes during , which occurs October 15 to December 7.
Bottom Line
Managing care for a rare disease is challenging enough. Dealing with health insurance coverage is a whole other battle, especially if you’re enrolled in Medicare.
While Medicare does cover essential testing and screening, life-saving experimental therapies (like those offered in clinical trials) and genetic testing may not always be covered. You have options — Medicare SNPs and Medigap plans may offer more coverage and offset costs.
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