What should I do with my Medicare plan if I'm diagnosed with a rare disease requiring specialists?

Question

Cynthia Nakaya · Accepted Answer

Your actions depend on what kind of plan you're on. If you have Medicare Supplement, you may go to any doctor in the US who accepts original Medicare as payment.

If you have a Medicare Advantage plan, you may have a PPO, an HMO, or a similar plan. If your plan is a PPO, you have a choice of going to a specialist in or out of network. In-network doctors have lower co-payments than out-of-network. You can check your Evidence of Coverage for your share-of-cost.

If you have an HMO, you will need a referral from your primary care physician to see a specialist. When your doctor writes the referral, ask him/her to mark it as urgent. This will speed up the processing time. Remember that Medicare Advantage is required to provide care at least as good as Original Medicare. Hold your health plan to that standard. Remember that you are your own best advocate. Best wishes to you and please contact me if you have questions.

Anthony Castelluccio · Answer

If you are on a Medicare Supplemental plan like a G or an N plan, you shouldn't be to concerned about the out of pocket cost that you will pay. If you are on a Medicare Advantage plan, just make sure your Specialist is in network.

Answered by Anthony Castelluccio on April 21, 2025

Agent Licensed in PA, DE, MD, NJ & VA

Answered by Anthony Castelluccio Medicare Insurance Agent

Laura Shipman · Answer

In this case I would recommend you give your agent a call to discuss the particulars.
Some Medicare Advantage pans will allow out of network coverages some will not.
There may be an opportunity to change your plan so that your specialist will be covered.
Always worth speaking to your agent.

Charles Boone · Answer

Consult with your Health Insurance Broker upon receiving the diagnosis. Depending on the situation and type of diagnosis, you may be eligible for a specialized plan or additional assistance.

Steven Bleicher · Answer

As long as the disease's treatment has been approved by Medicare by their putting an approximate dollar value in place, it will be covered. My only concern is in finding a doctor with experience in this rare malady. You might have to leave your home town to find a specialist so I do hope that you have a Med. Supp. in place. Don't forget that specialty hospitals (like the Mayo clinics, Sloan-Kettering, the Cleveland Clinic, MD Anderson, etc.) will only accept a Med. Supplement & not an Advantage plan.

Answered by Steven Bleicher on June 4, 2025

Broker Licensed in AZ

Answered by Steven Bleicher Medicare Insurance Agent

Gregg Matheny · Answer

Great question.if that rare disease is going to lead to expensive complications down the road, it may be a good idea to look into a supplement plan like a “G” or “N”. The tough part would be passing underwriting since you’ve recently been diagnosed. If you’re unable to pass underwriting Then you may just try to get familiar with your advantage plan costs and if possible, get familiar with all of your lesser expensive “in-network” options. It may be a good idea to utilize your broker or contact the Member Services number for your insurance and get a list of providers in your area.

Answered by Gregg Matheny on March 26, 2025

Agent Licensed in AZ & UT

Answered by Gregg Matheny Medicare Insurance Agent

Barbara Barnes, CMIP® · Answer

Once you choose your Medicare plan, there are a lot of rules for when and how you may and may not make changes to that plan.

Each year at an annual enrollment, you may choose whether you wish to be enrolled in a Medicare advantage plan or original Medicare. You may also choose which Medicare advantage plan you want to enroll with and change your plan if you do not want to continue the plan you have in the previous year. You may also choose a standalone prescription drug plan if you have original Medicare.

At any time of the year, if you have original Medicare, you may choose to enroll in a Medicare supplement plan or to change a Medicare supplement plan. If you are not new to Medicare, and if you do not have a special enrollment period, you will need to answer medical questions and go through medical underwriting to be approved for a new Medicare supplement plan. Approval is not guaranteed.

If you are enrolled in a Medicare advantage plan, you are locked into that plan for the entirety of the plan year, unless you have a special enrollment period.

Chances are that if you are diagnosed with a rare or serious disease, you will not qualify through medical underwriting for a new Medicare supplement plan. This does not mean that you cannot use original Medicare, but you will be responsible for the items that are not covered by original Medicare, such as the 20% coinsurance.

As always, I strongly recommend that you speak with a professional Medicare insurance agent before making any choices about your Medicare plan coverage. It is important to understand what the rules are before you enroll in a plan. It is also important to remember when you are purchasing a plan that you are buying it for the rainy days, not for the sunny days.

Fred Manas · Answer

1. Understand Your Current Coverage:  Original Medicare (Part A & B): This typically covers medically necessary treatments, including hospitalization and outpatient care, even for chronic conditions.
Medicare Advantage (Part C): If you have a Medicare Advantage plan, review its specifics. Some plans, called Special Needs Plans (SNPs), may be tailored for people with certain chronic diseases, offering benefits like specialized formularies, provider networks, and care coordination services.
Medicare Part D (Prescription Drug Coverage): This covers the cost of medications. Rare disease drugs, also known as orphan drugs, are generally covered, but often subject to prior authorization and placement on higher cost tiers. 
2. Explore Special Enrollment Periods (SEPs): A rare disease diagnosis may qualify you for an SEP, allowing you to change your Medicare Advantage or Part D plan outside of the usual enrollment periods. Contact Medicare (1-800-MEDICARE) or your State Health Insurance Assistance Program (SHIP) to understand your SEP options. 
3. Consider Medicare Advantage Special Needs Plans (SNPs): If your rare disease is a chronic condition, consider whether a Chronic Condition Special Needs Plan (C-SNP) may benefit you. C-SNPs can offer tailored benefits, provider networks, and care coordination specifically for your condition. 
4. Check Prescription Drug Coverage: Confirm your plan's formulary (drug list) includes any required medications. Be aware that prior authorization may be required for some rare disease drugs. If you face high out-of-pocket costs, explore patient assistance programs (PAPs) from the drug manufacturer, or the Medicare Extra Help program. 
5. Seek Expert Advice: Consult your healthcare provider and/or a Medicare specialist (like a SHIP counselor) to understand your options and choose the best plan for your needs.
Review your coverage annually during the Annual Enrollment Period

Marcie Barnes · Answer

I strongly recommend purchasing supplemental coverage for chronic diseases to protect yourself from catastrophic illnesses.

Charles Borg · Answer

See a specialist. Many times your Primary Care Provider can recommend someone. If not, sometimes friends or relatives can recommend someone.

Humara Riaz · Answer

You can see any specialist who accepts Medicare, without needing referrals.
	•	But out-of-pocket costs may be higher, especially if you don’t have a Medigap (Supplement) plan.

Tip: You might want to look into a Medigap plan to reduce your costs.

Ron Gambles · Answer

In general you should contact your plan, particularly if you have an Advantage Plan.  They typically have specialized treatment classes that target specific conditions.

Maci Mishler · Answer

If you are looking at an expensive disease, you will want to look more closely at Medicare Supplement options if you're new to Medicare. But, if you already have an advantage plan you will probably not be able to move to a Medicare Supplement. I recommend finding a good broker in your area to help you navigate.

Answered by Maci Mishler on June 9, 2025

Broker Licensed in NE, AR, KS & MO, ND, OK & TX

Answered by Maci Mishler Medicare Insurance Agent

Michael Pane · Answer

Check the provider network to see if the specialists participate.
Review the plan's Part D formulary to see if prescriptions are in there.
Ask your specialist for a care plan. Work with your plan to assist in no surprises when it comes to out-of-pocket expenses.
If you live in a state that has Guaranteed Issue for Medicare Supplements, investigate the cost of enrollment versus staying with a Medicare Advantage plan.

Daniel Young · Answer

Review your coverage with your agent to make certain the treatment is covered and specialists in network if an HMO.

Christine Itami · Answer

I would not recommend you do anything at this point, unless you have a certain type of rate disease that may be eligible for a Special Needs Plan.  It would be in your best interest to call your agent to discuss this with him/her to see if there is anything that would be more suitable for you under a Special Election Period.  

If you have a Medicare Supplement, you don't need to do anything.

Rodrigo Ferrer · Answer

This is why we take out insurance. If that were to occur then certainly it would be the time to use your Medicare plan to the fullest. Medicare plans are not designed to just treat common ailments. If you need to see specialist then see them. Work with your agent and plan to see if you would need to stick to a specific network or get referrals. It's good to get familiar with your plan's co-payments and deductibles before you get the care and treatment you require.

Answered by Rodrigo Ferrer on May 26, 2025

Broker Licensed in CT

Answered by Rodrigo Ferrer Medicare Insurance Agent

Taylor Blankenship · Answer

They make special plans that have benefits that help people in your position. You may want to sit down with a agent and go over some C-Snip plans in your area.

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