Medicare 101 for Patients with Brain Tumors and Their Caregivers

Navigating Medicare can be a complex process, especially for those facing a brain tumor diagnosis. Understanding how Medicare works and what it covers can be crucial for patients and caregivers to manage health care costs and make informed decisions about treatment options. 

In this guide, we’ll cover key aspects of Medicare, including eligibility and coverage, while answering common questions that patients and care partners often have about the program. NBTS spoke with two Social Security Administration representatives to try and break down the many moving parts of Medicare for the brain tumor community.

What is Medicare?

Medicare is a U.S. federal health insurance program that primarily provides coverage for individuals aged 65 and older. It also serves younger people with specific disabilities or health conditions. 

What is the difference between Medicare and Medicaid? 

Medicare and Medicaid are both health insurance programs, but they differ in who is eligible, what they cover, and how people pay for them. 

“Medicare is a federal health insurance program for people 65 and older, and some people under 65 with certain disability conditions,” said Joie Hill, public affairs specialist with the Social Security Administration. “People with Medicare pay for part of the cost with premiums, deductibles, and co-insurance. On the other hand, Medicaid is a state-run program for people with limited income and resources. Eligibility requirements and benefits may vary from state to state. Most Medicaid patients pay nothing, or if they do, it’s usually a small co-payment.”

How common is dual eligibility?

It is possible to be eligible for both Medicare and Medicaid. Dual eligibility generally includes individuals who are 65 or older or have a qualifying disability or condition (such as certain types of brain tumors) and have a limited income and resources that meet state Medicaid eligibility requirements.

Medicare typically covers acute health care needs (e.g., hospital stays, doctor visits, and medications). Medicaid helps with Medicare premiums, cost-sharing, and additional services like long-term care, which Medicare does not cover.

“In 2019, about 12.3 million people in the U.S. were dual eligible,” Joie said.

Am I eligible? 

If you are 65 years or older, you’re likely eligible for Medicare if:

• You are a U.S. citizen or a permanent legal resident who has lived in the U.S. for at least five consecutive years.
• You or your spouse have worked and paid Medicare taxes for at least 10 years (40 quarters).

If you’re under 65, you may qualify for Medicare if you have a disability and receive Social Security Disability Insurance (SSDI) benefits. You automatically qualify for Medicare after receiving SSDI for 24 consecutive months. Medicare will then cover Part A and Part B once eligible.

What are the differences between Medicare Part A, Part B, Part C, and Part D?

Medicare has several components, known as “Parts,” each covering different medical services. Medicare includes Part A, Part B, Part C (Medicare Advantage), and Part D. 

“Medicare Part C, D, and Medigap are private insurance that follows Centers for Medicare & Medicaid Services (CMS) guidance, said Lydia Chevere, public affairs specialist with the Social Security Administration. “We recommend that people go to Medicare.gov to find private insurance in their area.”

Part A

Part A, also known as hospital insurance, helps pay for in-patient hospital stays, skilled nursing facility care, hospice care, and some home health care.

According to CMS, “Most people get Part A for free, but some have to pay a premium for this coverage. To be eligible for premium-free Part A, an individual must be entitled to receive Medicare based on their own earnings or those of a spouse, parent, or child.”

Part B

Part B, also known as medical insurance, helps pay for preventative care and medically necessary services — “services or supplies that meet accepted standards of medical practice to diagnose or treat your medical condition.” 

Part B requires a monthly premium, which can vary based on income. According to CMS, “Each year, the Medicare Part B premium, deductible, and coinsurance rates are determined according to provisions of the Social Security Act.”

Part C (Medicare Advantage)

Medicare Part C, also known as Medicare Advantage, includes all of the benefits and services covered under Medicare Part A and B and usually includes prescription drug costs (Part D). Many Medicare Advantage plans also include vision, hearing, and dental.

Part D

If you enroll in Medicare Parts A and B, you can purchase Medicare D, which helps pay for prescription drug costs. Plans that offer Medicare drug coverage are run by private insurance companies that must follow Medicare rules.

What is a formulary?

A formulary is a list of prescription medications covered by a specific Part D plan. The medications on the formulary are typically categorized into tiers based on factors like cost, type, and therapeutic use. 

Only medications on the formulary are covered by your plan. If a specific brain tumor medication isn’t listed, you may have to pay the full price for it, unless you qualify for an exception.

You can visit the plan’s website to review their formulary, as they are usually posted online. If you cannot find it on their website, you can contact their customer service department and ask for a copy of the formulary. The Medicare Plan Finder on Medicare.gov also lets you see drug costs and coverage to help you compare plans.

What is the difference between Original Medicare and Medicare Advantage?

It’s helpful to compare Original Medicare and Medicare Advantage before making an enrollment decision. In addition to our comparison below, Medicare.gov offers a complete chart comparing the two by doctor and hospital choice, cost, coverage, and foreign travel.

Original Medicare

You may hear the term Original Medicare when looking for coverage. It includes Part A (hospital insurance) and Part B (medical insurance), which comes directly from the federal government.

• Original Medicare allows you to see any doctor, hospital, or health care provider nationwide, as long as they accept Medicare.
• Beneficiaries are responsible for certain costs, including deductibles, coinsurance, and premiums for Part B. There’s no cap on out-of-pocket spending, which can add up for those with ongoing medical needs.
• Original Medicare does not cover prescription drugs, long-term care, or routine dental, vision, and hearing services.

Medicare Advantage

Medicare Advantage (Part C) allows beneficiaries to receive their Part A and Part B benefits through private insurance plans approved by Medicare. Private companies offer these plans and may provide additional coverage beyond what Original Medicare offers. Many plans also include Part D, which means beneficiaries can get hospital, medical, and drug coverage under one plan.

• Most Medicare Advantage plans use networks of doctors, hospitals, and other providers. As Lydia explains, “With Medicare Advantage, you may be limited to a specific network.”
• Medicare Advantage plans are based on geographic regions, meaning the availability of plans varies depending on where you live. Each Medicare Advantage plan has a defined service area, usually based on counties or zip codes. To enroll, you must reside within the plan’s service area. 
• The plan covers the rest of the year once you reach the limit on out-of-pocket costs for Part A and Part B services. This limit can offer financial protection, especially for people with ongoing medical needs.
• Unlike Original Medicare, Medicare Advantage can include routine dental, vision, and hearing services.

This helpful Medicare.gov table compares types of Medicare Advantage plans.

What is the difference between a Medicare Advantage HMO and a PPO?

Medicare Advantage plans, including Health Maintenance Organizations (HMOs) and Preferred Provider Organizations (PPOs), provide alternatives to Original Medicare. There are differences between these plans, so it’s essential to consider your circumstances carefully — your health care needs, budget, and whether you prioritize flexibility or cost savings — to determine which option makes sense for you.

HMO

A Health Maintenance Organization (HMO) is a Part C plan through a private insurance company. Generally, you must receive your care and services from providers and hospitals in your network’s plan, except for emergency care, out-of-area urgent care, and temporary out-of-area dialysis. 

• Some HMOs with a Point of Service (POS) option allow limited out-of-network care at a higher co-pay.
• In most HMOs, you must choose a primary care doctor and then get a referral to see a specialist. 
• An HMO typically has lower monthly premiums than PPO plans.

PPO

A Preferred Provider Organization (PPO) is a Part C plan through a private insurance company. Like an HMO, this plan also has a network of providers and hospitals. 

• Unlike HMO plans, you do not need to select a primary care doctor and get referrals to see specialists. 
• Generally, you can go to out-of-network providers for covered services if they’re participating in Medicare. Still, you’ll usually pay more than you would be using a provider or hospital that belongs to the plan’s network.
• A PPO typically has higher monthly premiums than HMO plans; you’re paying more for the ability to see out-of-network providers.

What is Medicare Supplemental Insurance (Medigap)?

Medigap, also known as Medicare Supplemental Insurance, helps pay for your out-of-pocket costs — co-pays, coinsurance, and deductibles — that Original Medicare doesn’t cover. For example, if Original Medicare covers 80% of a service, Medigap can cover the remaining 20%.

• You can only get Medigap if you have Original Medicare. It cannot be used with Medicare Advantage (Part C).
• Like Original Medicare, Medigap allows beneficiaries to see any doctor or visit any hospital nationwide that accepts Medicare. 
• Medigap plans have an additional monthly premium in addition to the Part B premium required by Medicare.
• Medigap can be ideal for those on Original Medicare who want predictable health care costs, especially if they expect frequent or high-cost medical needs.
• Medigap does not include prescription drug coverage, so you’ll need a separate Medicare Part D plan.
• According to Medicare.gov, “Medigap plans are standardized, and in most cases named by letters, like Plan G or Plan K. Not all plans are offered in every state, and if a state offers a plan, not all insurance companies sell policies for it. Compare the benefits of each lettered plan to help you find one that meets your needs now and in the future. You might not be able to switch Medigap policies later.”

If you want Medigap, it’s best to buy a policy during your Open Enrollment Period — the 6-month period that starts the first day of the month you’re 65 or older and signed up for Part B — because insurers cannot deny coverage or charge higher premiums due to pre-existing conditions. 

If you are under 65 and qualify for Medicare because of a disability, please note that federal law doesn’t require companies to sell Medigap policies to individuals under 65. Depending on where you live, your state may allow you to purchase a Medigap policy under 65.

How do I enroll in Medicare if I am under 65 with a disability like a brain tumor?

If you’re already getting disability benefits from Social Security (Social Security Disability Insurance) or the Railroad Retirement Board, you’ll automatically be enrolled in both Part A and Part B, starting the 25th month of the disability, after you have received disability benefits for 24 months. You are not automatically enrolled in Part C or D.

“If interested in Medicare Part D (prescription drug plan) or Medicare Part C (Medicare Advantage), you’ll need to enroll yourself directly with a private plan provider,” Joie said. “You need to enroll during your [7-month] initial enrollment period to avoid penalties. If you don’t enroll in Medicare Part B when you were first eligible, you may pay a late penalty.” 

If you have not yet applied for Social Security Disability Insurance, you can do so if your disability meets the Social Security Administration’s (SSA) criteria, which means having a medical condition that prevents them from working and is expected to last at least one year or result in death. 

Through the Compassionate Allowances program, SSA can make expedited medical decisions for people diagnosed with a condition that meets Social Security’s standards for disability benefits. Reference the SSA website for the most up-to-date list of qualifying compassionate allowances conditions, which includes some brain tumors.

You can still apply for SSDI benefits if your brain tumor is not listed as one of the compassionate allowances conditions. However, you won’t benefit from an expedited decision.

How can I enroll after my initial enrollment period?

If you don’t enroll during your first chance to sign up — the 7-month Initial Enrollment Period (IEP) — you can enroll during Medicare’s General Enrollment Period (GEP), which runs from January 1 through March 31 every year. 

“Some people are able to postpone Medicare Part B enrollment and avoid the late enrollment penalty if they are covered under a group health plan based on their or their spouse’s current employment,” Joie said. “These folks qualify for a Special Enrollment Period. They can enroll anytime, while covered under the group health plan, or within eight months after the plan coverage ends.” 

If you don’t enroll in a Part D plan during your IEP and don’t have creditable prescription drug coverage, you may face a late enrollment penalty. 

Is there a way to receive Medicare under 65 if SSDI is denied?

If you are denied Social Security Disability Insurance and do not qualify for Medicaid, which can sometimes bridge access to Medicare, it is not possible to qualify for Medicare under the age of 65. If your SSDI application was denied, you can appeal within 60 days of receiving the initial decision. 

How can I determine which Medicare plan best covers treatment for brain and spinal tumors?

While no Medicare plan is universally “better” for brain tumor care, certain plans and features can offer more robust support depending on your specific treatment needs and location. You can ask yourself the following questions to help identify the right plan for your diagnosis and circumstances:

• Are my preferred doctors and specialists in-network?
• Does the plan require pre-authorizations?
• Does the plan cover major cancer centers, like NCI-Designated Cancer Centers, and specialists such as neuro-oncologists, neurosurgeons, and radiologists experienced in brain tumor care?
• Can I see out-of-network specialists if needed?
• Are my current medications covered under the formulary, and at what cost?
• Would those medications still be covered if I decide to undergo chemotherapy or other targeted therapies in the future?
• What are my out-of-pocket costs to consider (e.g., deductibles, co-pays, and coinsurance)? What is the annual out-of-pocket maximum? For example, a low yearly out-of-pocket limit plan will help cap your costs.
• Does the plan offer benefits for rehabilitation services (physical, speech, and occupational therapy), mental health care, palliative care, transportation, or home health services?
• Will the plan cover routine care costs associated with clinical trials?

Lydia said, “For specific information about the type of coverage available for brain tumor treatment, we recommend that patients and/or their caregivers visit Medicare.gov/coverage. From there, they can compare the different health and drug plans and coverage available for brain tumor treatment.”

Where can I get Medicare assistance locally?

According to ShipHelp.org, each state has a local State Health Insurance Assistance Program (SHIP) to provide free one-on-one “unbiased help to Medicare beneficiaries, their families, and caregivers. Whether you are new to Medicare, reviewing Medicare plan options, or have questions on how to use your Medicare, SHIP can help.” 

How can I ensure Medicare will cover home health care?

To ensure Medicare will cover home health care, you must meet specific eligibility requirements and follow the necessary steps for approval. Explore these two resources to learn more about navigating the process:

• The Centers for Medicare & Medicaid Services have a home health care booklet that breaks down who is eligible, what services are covered, and how to find and compare home health agencies. Explore this resource for more details.
• The National Council on Aging shares seven takeaways you should know about Medicare’s home health care benefit.

Does Medicare cover clinical trials or experimental treatments for brain tumors?

Yes, Medicare covers routine costs for qualifying clinical trials. Medicare.gov reports that Part A and/or Part B will cover some costs, such as tests and office visits, for certain clinical trials. Through Original Medicare, you may pay 20% of the amount approved by Medicare, depending on your treatment, and your Part B deductible may apply. Review CMS’s Medicare & Clinical Research Studies booklet for more information.

What should I do if my Medicare plan denies coverage for a specific brain tumor treatment or medication?

You can file an appeal. Ask your provider for any details that could make your appeal stronger. 

A U.S. News report found that nearly all Medicare Advantage plans required prior authorizations for certain services, yet “82% of denials were ultimately overturned on appeal in 2021.” 

While time-consuming, it’s worth trying to appeal and obtain coverage. According to Medicare.gov, “If you’re in a Medicare Advantage plan, other health plan, or a drug plan, check your plan materials or contact your plan for details about your appeal rights. The plan must tell you, in writing, how to appeal. Generally, you can find your plan’s contact information on your plan membership card.”

You can appoint a family member or friend as a representative to help you with your complaint, or you can contact your local SHIP to get free counseling.

Do I need to re-evaluate my plan each year?

Yes. Medicare plans change yearly. Review your plan during the Annual Enrollment Period (October 15 – December 7) to ensure it still meets your needs. If not, you can join, drop, or switch Part C and Part D plans during this time each year.

Part D plans are required to update their formulary annually, and they must notify you of any significant changes, such as medications being removed from the formulary or moved to a higher-cost tier. You’re encouraged to review your plan’s formulary each year to ensure your medications remain covered.

Resources

Social Security Administration’s 2024 Medicare Booklet

Medicare’s Understanding Medicare Advantage Plans

AARP’s What You Need to Know About Medicare While on Vacation

National Brain Tumor Society does not provide legal, tax, or financial advice. We strongly recommend that you consult professional advisors on all legal, tax, or financial matters. The content in this blog post is for informational and educational purposes only.

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