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 placed a dollar value by Medicare, it will be covered. My only concern is in finding a doctor with experience in this 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, etc.) will only accept a Supplement & not an Advantage plan.

Answered by Steven Bleicher on June 3, 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

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.

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.

Charles Borg · Answer

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

Daniel Young · Answer

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

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.

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.

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

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