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Exondys 51 Medicare coverage

Eteplirsen

Used for Muscular Dystrophy

Exondys 51 (eteplirsen) is an injectable medication that's used for a rare, genetic condition called Duchenne Muscular Dystrophy (DMD). It was the first medication approved for DMD through the FDA's Accelerated Approval Program. Exondys 51 (eteplirsen) is given as an intravenous (IV) infusion by a healthcare provider. Your child will need to take a genetic test before starting this medication to make sure it's right for them.

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Annual Notice of Change (ANOC):

The Medicare Annual Notice of Change (ANOC) is a letter for people enrolled in Medicare Advantage plans and anyone with Medicare Part D prescription coverage. People with Medicare Advantage or original Medicare (Part A and/or Part B) can have Part D plans. The ANOC informs enrollees about any changes to their benefits for the coming coverage year. By law, Medicare Advantage and Part D plans must send the ANOC to enrollees by September 30 — which is before the annual Medicare open enrollment period of October 15 to December 7. Even if you have the same plan, your benefits could change year to year.

Premium:

A premium is the cost of having a health insurance plan and is usually paid monthly. Medicare enrollees may pay several premiums. Most people don’t pay anything for Part A hospital insurance, but some people do depending on how long they worked and paid taxes. For outpatient and preventive coverage, the Part B standard premium is $185 a month in 2025, but people with higher incomes pay more. Your premium for Medicare Advantage plans will vary, but even so-called “zero premium” plans require you to pay your Part B premium. Part D premiums range in price, but the average is about $47 a month in 2025. If you have original Medicare and a Medigap supplement plan, you have an additional premium for that coverage.

Deductible:

A deductible is the amount you pay out of pocket before your Medicare plan begins cost-sharing. In 2025, the Part A deductible is $1,676 per benefit period. The Part B deductible is $257 for the year, but you can access certain preventive care — including some vaccines — without meeting your deductible. Medicare Advantage deductibles vary and your Part D deductible can’t exceed $590 in 2025.

Out-of-pocket limit:

Original Medicare has no annual out-of-pocket maximum. Medicare Advantage plans have out-of-pocket limits. In 2025, they are $9,350 for in-network covered services and $14,000 for in-network and out-of-network covered services combined.

Medicare Prescription Payment Plan:

Starting January 1, 2025, anyone with Part D coverage had the option to use the Medicare Prescription Payment Plan for their out-of-pocket medication costs instead of paying upfront at the pharmacy. This plan doesn’t provide savings, but allows you to spread prescription costs — including your deductible — over the year. Making payments can be particularly helpful for people who may skip or delay picking up prescriptions because of high costs early in the year. Also in 2025, the Part D out-of-pocket limit dropped to $2,000.

Initial coverage phase:

After a Medicare enrollee meets the Part D deductible (if the plan has one), the health insurance begins cost sharing. The initial coverage phase means you pay coinsurance or a copay for covered prescriptions.

Catastrophic phase:

When you reach the $2,000 out-of-pocket maximum, your Part D plan pays for 100% of covered medications for the rest of the year.

Medication ready
How to save on drugs with Medicare

Medicare Part D is the part of Medicare that helps cover prescription medications, including both brand name and generic. It also includes coverage for certain vaccines that aren’t covered by Part B, as well as some medical supplies.

Even with Medicare Part D coverage, you may still have out-of-pocket costs such as premiums, deductibles, copayments, and coinsurance. As of 2025, Medicare Part D plans include a $2,000 annual out-of-pocket cap. Once you reach this limit, your plan covers the full cost of your covered medications for the rest of the year.

Still, there are several ways to reduce your prescription medication cost. From GoodRx coupons to patient assistance programs, here are ways you can save money on the medications you need.

1. See if you qualify for Medicare’s Extra Help program

The Medicare Extra Help/Low-Income Subsidy program is a federally funded program for people covered under a Medicare Part D plan. It helps reduce enrollees’ out-of-pocket costs by limiting their deductibles and copays. To qualify, your income and assets fall below a certain limit.

If you’re eligible, you may receive:

  • No monthly premiums for Medicare Part D

  • No Medicare Part D deductible

  • Low copays for prescription medications

2. Use GoodRx coupons

You can’t combine GoodRx coupons with Medicare, but you can choose to use a coupon instead of your insurance if it results in a lower price.

Here’s how to download a GoodRx coupon:

  1. Go to the GoodRx website, or download the GoodRx app on your phone.

  2. Search for your prescription medication.

  3. Enter your prescribed dose and quantity, then set your location.

  4. Compare prices across different pharmacies in your area.

  5. Click “Find the lowest prices” or press “Enter.”

  6. You can have the coupon sent by text or email, or print it out.

  7. To apply the discount, show the coupon at the pharmacy when you fill your prescription. Ideally, this is done at drop-off before the prescription is filled.

3. Consider the Medicare Prescription Payment Plan

The Medicare Prescription Payment Plan is a new program that can help make paying for medications more manageable. It’s open to anyone with a standalone Part D plan or those with Medicare Advantage plans that offer prescription medication coverage.

There is no cost to participate in the Medicare Prescription Payment Plan and participation is voluntary. Instead of paying for the total cost of your medications up front at the pharmacy, the payment plan allows you to spread the cost into smaller payments during the year. If you join, you will continue to pay your premium every month as well as an additional monthly amount on your payment plan. It’s a good idea to review how the Medicare Prescription Payment Plan works to determine if it’s right for you.

4. Compare Part D plans during open enrollment

Medicare open enrollment, which takes place every year from October 15 to December 7, is your chance to switch plans if another option offers better prescription medication coverage or lower costs. Plan costs and coverage details can change each year, so it’s important to review your options.

Here are some steps to help you compare plans:

  1. Make a list of all your medications and what dosages you take.

  2. Enter the names of your prescription medications to see which plans offer the best coverage.

  3. Look at premiums, deductibles, and medication costs for each plan. Plans usually change their formularies, premiums, and copays annually.

  4. Check if your preferred pharmacy is in each plan's network.

5. Get a 90-day supply

Opting for a 90-day supply instead of a monthly refill of your medication might help reduce your long-term out-of-pocket costs. Many insurance plans offer lower copays or bulk pricing for 3-month prescriptions.

If your medication is covered under your plan, see if your insurer’s mail-order or specialty pharmacy provides savings on a 90-day supply. If they do, ask your prescriber to write a prescription for a 90-day quantity to take advantage of these potential savings.

6. Ask about the generic version of your medication

Some medications have a generic version, and they generally cost less than the brand-name prescriptions. Generic medications are just as safe and effective as brand-name medications, so it’s an option worth considering to reduce your cost. Ask your prescriber about switching to a generic version of your medication to save money.

7. Consider lower-cost alternative medications

There may be other medications that help manage your condition, and they may cost less. If your medication is costly or not covered by your insurance, talk to your prescriber about lower-cost alternatives that might be a good option for you. Alternatives might have better insurance coverage or lower costs.

8. Learn more about patient assistance programs

Patient assistance programs (PAPs) offer free or low-cost medications to uninsured and low-income consumers. These programs, which primarily offer savings on brand-name medications, are usually run by private pharmaceutical companies or nonprofit organizations. You must meet certain qualifications and complete paperwork to receive savings from PAPs. However, some PAPs exclude Medicare recipients, so it’s important to review the program’s rules and requirements carefully.

9. Check state-funded resources

Depending on where you live, your state may offer programs to help you navigate prescription medication costs. A good place to start is your local Department of Aging. This U.S. Department of Health and Human Services office can help you find the best Medicare plan for the coverage you need.

Some states even have their own cost-saving programs for older adults. For example, Pennsylvania runs PACE and PACENET. These programs help eligible residents get prescription medications at reduced costs.

Alternatively, you can find out if your state has a State Pharmaceutical Assistance Program by using Medicare’s search tool. These programs are state-run and help qualifying residents pay for prescription medications.

10. Use a health savings account to pay for prescription medications

Although you can’t contribute to a health savings account (HSA) after enrolling in Medicare, you can still use any remaining funds in your account to pay for qualified medical expenses. An HSA allows you to use tax-free dollars to pay for eligible prescription medications. The money in your account does not expire so you can use your funds at any time to reduce your out-of-pocket medication costs.

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Frequently asked questions about Exondys 51

DMD is a rare, genetic condition that causes muscle weakness and wasting in young people. Your body needs a specific protein called dystrophin to keep muscle cells intact. In people with DMD, this protein is either missing or present at lower levels. Over time, this can cause movement problems (e.g., repeated falls, difficulty walking), heart problems (e.g., irregular heartbeat, heart failure), and stomach problems (e.g., constipation, diarrhea). Exondys 51 helps to raise the levels of dystrophin in certain people, providing relief from symptoms of DMD.

Exondys 51 is used in certain people with DMD that have a mutated exon 51, a specific part of a gene. It skips (cuts out) exon 51 to help the body make a shortened dystrophin protein that somewhat works. About 13% of young people with DMD are affected by this mutation. Typically, a genetic test that looks at changes in DNA can help identify your child's specific mutation. There are also other "exon skipping" medications available to treat different mutations in exons, such as Vyondys 53 (golodirsen) and Amondys 45 (casimersen). If you have any questions about whether Exondys 51 is right for your child, follow up with your child's provider for more information.

The FDA's Accelerated Approval Program allows a new medication to be approved faster than usual if it fulfills an unmet need or if it treats serious or life-threatening conditions. These approvals are based on lab measurements that are thought to predict health outcomes before the medication shows clear benefits. For Exondys 51, the medication raised the amount of dystrophin in skeletal muscles, which might predict better muscle control in certain people with DMD. After accelerated approval, the manufacturer is required to complete clinical studies to confirm beneficial health outcomes (in this case, if Exondys 51 improves muscle control and other symptoms in people with DMD). Depending on the results of these studies, the FDA can either give the medication full approval or pull it off the market.

It's not currently clear whether Exondys 51 can improve muscle control in certain people with DMD. As mentioned in the FAQ above, it's only known that the medication raises the amount of dystrophin. More clinical studies are still required to make sure this medication can help with muscle movement. Typically, physical therapy and gentle exercises (e.g., swimming, stretching) are recommended along with Exondys 51 to build muscle strength and prevent joint stiffening. Talk with your provider to see what exercises can benefit your child while receiving this medication.

Your child might be able to receive Exondys 51 if they have kidney problems. Keep in mind that studies showed that some animals that received this medication developed kidney problems. While animal studies don't always represent what happens in humans, it's important to look out for life-threatening kidney problems. Talk with your child's provider if your child is experiencing confusion, is urinating less than usual, or is swelling in the arms and legs while receiving Exondys 51 injections. These can be signs and symptoms of severe kidney problems.