Updated FAQ: New Medicare coverage of immunosuppressive drugs for individuals with kidney transplants

In December 2020, an important piece of legislation was signed into law giving kidney transplant recipients under the age of 65 immunosuppressive drug, or antirejection medicine, coverage for the life of their transplant through Medicare. Here are some answers to commonly asked questions about this new Medicare benefit, including when it kicks in, who qualifies, when to enroll and more.

What is the current law?

Most people with kidney failure are eligible for Medicare because of their end-stage renal disease (ESRD), regardless of their age. If you are under age 65, Medicare coverage ends 36 months after you receive a kidney transplant, meaning coverage for your immunosuppressive drugs, which you need to keep your body from rejecting your transplanted kidney, ends at that time as well.

The end of Medicare coverage has had disastrous results for people with kidney transplants who cannot afford the medicines on their own. Patients have lost their transplants, forcing them to return to dialysis, and in some cases patients have died.

What is changing?

Starting Jan. 1, 2023, if you are under age 65, are living with a kidney transplant and meet other criteria, you will be eligible for Medicare coverage of your immunosuppressive drugs for the life of your transplant. The Centers for Medicare and Medicaid Services (CMS) has finalized regulations on how this change will be implemented.

Who will be eligible for the benefit?

If you are a kidney transplant recipient under age 65 and your Medicare coverage is ending 36 months after receiving your transplant, and you are not enrolled in other health insurance coverage, you are eligible.

If you are enrolled in certain other types of insurance, you cannot enroll in the immunosuppressive drug benefit. Those other types of insurance include: Medicaid, qualified health plans purchased through the Affordable Care Act's Marketplace, employer group health plans, individual insurance, TRICARE, the State Child Health Insurance Program, and Veterans Affairs benefits.

Does the new benefit include other drug coverage or health benefits in addition to immunosuppressive drug coverage?

No, the benefit only covers drugs that are specifically labeled as immunosuppressive drugs and approved for marketing by the FDA. The benefit is not a substitute for full health coverage.

Do I have to enroll in the prescription drug benefit under Medicare (Medicare Part D)?

No, this benefit will be provided under Medicare Part B.

How do I enroll in this new benefit?

Call the Social Security Administration (SSA) at 877-465-0355. This is a special phone number just for this new benefit. TTY users can call the general line at 800-325-0778. You will be asked to provide a verbal attestation that you are not enrolled and do not expect to enroll in other health coverage.

Alternatively, you can download a PDF attestation form from the CMS or SSA website, complete the form, and mail it to SSA. If you do not have internet access, you can contact an SSA representative and ask them to mail a form to you to complete and mail back to SSA. In the future, SSA may provide other ways to submit the attestation, such as electronically or by fax.

Once enrolled, you will receive a new Medicare card that will include specific language that describes the benefit.  

You can also download a helpful infographic about to enroll here.

When can I enroll in this new benefit?

If your 36-month post-transplant Medicare coverage ended prior to Jan. 1, 2023, you can enroll in the benefit now. If your Medicare coverage ends on or after Jan. 1, 2023, you can enroll any time your coverage ends.

When does my coverage start?

If your 36-month post-transplant Medicare coverage ends on or after Jan. 1, 2023, and you submit your required attestation before your coverage ends, your immunosuppressive drug coverage begins with the month your 36-month post-transplant Medicare coverage ends.

If your 36-month post-transplant Medicare coverage ends on or after Jan. 1, 2023, and you do not submit your required attestation before your coverage ends but later provide the attestation, your immunosuppressive drug coverage begins with the month following the month in which you provided the attestation.

If your 36-month post-transplant Medicare coverage ended prior to Jan. 1, 2023, and you submit your attestation as part of the enrollment process from Oct. 1, 2022 through Dec. 31, 2022, your immunosuppressive drug coverage begins Jan. 1, 2023.

Can I disenroll and reenroll in this coverage?

Yes. If you are enrolled in immunosuppressive drug benefit and then enroll in other health coverage that would make you no longer eligible for the immunosuppressive drug benefit, you must notify SSA within 60 days of enrolling in that other coverage to terminate your immunosuppressive drug benefit. If you later lose that other health coverage, you can re-enroll in the immunosuppressive drug benefit at any time if you meet the eligibility requirements and submit the required attestation. There would be no late enrollment penalties assessed, regardless of when you enroll, re-enroll or disenroll from the benefit.

How much will it cost?

The monthly premium for this benefit is $97.10 in 2023. A higher monthly premium may apply based on your income.

The annual deductible is $226 in 2023. Once you have met the deductible, you will pay 20% of the Medicare-approved amount for your immunosuppressive drugs.

You may be able to get help paying for this benefit from programs that are offered through your state. Contact your state's Medicaid office to learn more.

Will I be required to use specific drugs or generics?

No, you can use the medicine you are currently using. There will be no step-therapy or drugs from specific drug tiers that you must use.

I had private insurance when I received my transplant and never enrolled in or applied for Medicare. I have now lost my job and need help paying for my immunosuppressive drugs. Am I eligible for this benefit?

No, only those who were enrolled in or applied for coverage prior to their transplant are eligible for this benefit.

For more help in navigating Medicare coverage and your options, contact your local State Health Insurance Assistance Program (SHIP). Find your local SHIP at shiphelp.org or call 877-839-2675. SHIPs are federally funded programs that provide local, in-depth and objective insurance counseling and assistance to Medicare-eligible individuals, their families and caregivers.