Health insurance and financial assistance for myasthenia gravis

Last updated Jan. 21, 2025, by Agata Boxe
Fact-checked by Patrícia Silva, PhD

Navigating treatment costs and insurance coverage for myasthenia gravis (MG) can be challenging and add to the stress of living with a condition like MG.

MG is a chronic neuromuscular disease characterized by symptoms such as muscle weakness, fatigue, droopy eyelids, slurred speech, and swallowing problems. It can flare up unexpectedly, impacting your ability to work and care for yourself.

Doing your best to find the right insurance plan and sources of financial assistance can make a difference in your quality of life.

Navigating health insurance for myasthenia gravis

Understanding your coverage needs and trying to find a health insurance plan that meets them can help you better manage MG costs.

Coverage options may include private insurance, such as a plan provided by an employer or one purchased on your own, and public insurance, such as Medicare or Medicaid, which is  provided by the government.

An additional disability insurance, which provides financial support for people who are unable to work because of a disabling condition or injury, may also be something to consider in case the type of MG you have ever prevents you from earning an income.

Understanding coverage needs

Depending on your symptoms, you may want an insurance plan that covers regular doctor visits, such as to a neurologist, your MG medications, and supportive therapies, of which costs can vary widely.

How much you pay for prescription medications that treat MG, such as corticosteroids and immunosuppressants, depends on whether you have insurance and its coverage specifics, your pharmacy, and if you have been prescribed generic or brand-name medications. While generics are usually more affordable, they are not always, which is why you should compare costs of each medication that you take.

Other MG treatments include plasmapheresis, or plasma exchange, which may be needed to  treat a potentially life-threatening myasthenic crisis, and intravenous immunoglobulin (IVIG) therapy, which can quickly, though only temporarily, alleviate symptoms during a flare-up.

If you think you are experiencing a myasthenic crisis, go to the ER or call 911.

Some people with MG may require a thymectomy, or removal of the thymus. The procedure may be recommended if you have moderate to severe muscle weakness and are younger than 60 or have thymoma, which is a tumor in the thymus gland.

As an MG patient, you may also need speech therapy to address slurred speech, physical therapy to strengthen your muscles, and occupational therapy to help with daily tasks such as brushing your teeth and combing your hair. Whether these supportive services are covered — fully, partially, or not at all — depends on the specifics of your insurance plan.

The exact costs of treatments, doctor’s visits, and procedures — as well as hospitalizations — depend on the provider, where you live, and the type of insurance you may have.

Private insurance for myasthenia gravis

Because of MG’s unpredictable nature and range of symptoms, choosing a plan with comprehensive coverage can help you manage them as well as possible.

Ideally, your insurance should cover specialized MG treatments, frequent doctor visits, and possible emergency care.

Private health insurance plan considerations for MG:

• Look for a plan that will cover the costs of treatments specific to your individual MG needs, from prescription medications to supportive therapies, if you need them.
• Call your neurologist and other members of your MG health team to ensure that all of them accept the insurance you’re considering.
• If you are using mobility aids or believe you may need them in the future, check whether your plan covers their costs and repairs.
• Try to find a plan with low copays — fixed amounts you pay for services such as a doctor’s visit — and low deductibles, the amounts you owe out of pocket for a service before your insurance starts paying.
• Opt for a plan with a copay cap, which is a limit on how much you have to pay for covered healthcare services per year.
• Check if any MG treatments, especially those you are currently using, require prior authorization, which is when your doctor has to submit a request for the insurance company to approve a treatment before the company may pay for it.

Your health insurance premiums, which are the fees you pay for the health insurance, are another important factor to consider when selecting an MG insurance plan.

While plans with lower premiums may initially seem more affordable, they tend to have higher deductibles and out-of-pocket costs. Higher premiums, which generally have lower out-of-pocket costs, may help you save money in the long run if you have a chronic illness such as MG and will likely need regular medical care.

Disability insurance and appealing a claim denial

You may consider buying disability insurance if you think that one day the disease may prevent you from being able to earn an income. Check to see if you can enroll in a group plan if you are currently working and your employer offers such plans. If not, look into getting an individual plan that you buy on your own, although many have exclusions that limit coverage for preexisting conditions. It is important to read the fine print and understand the terms and conditions of each plan.

Nick Ortiz, an attorney specializing in disability law based in Pensacola, Florida, says that each option has pros and cons. While group disability insurance plans tend to be more affordable, often costing as little as a few dollars per pay period, individual plans, which cost more — between $100 and $200 per month — offer more consumer protections.

Be prepared that your claim may be denied, for example, because your insurer may allege that your symptoms are not severe enough to prevent you from working. If you file a disability claim and it is denied, you will first have to appeal the decision with the insurance company within a certain amount of time.

Ortiz recommends putting extra effort into the appeals process.  Filling out a form provided by your insurance company will often not be enough to reverse the decision.

“I wouldn’t fall for that trap of just simply saying, ‘I hereby appeal,’ and then doing nothing more than that,” Ortiz says. “That may be enough to technically satisfy what constitutes an appeal, but the problem is, it makes it easy for them to deny if there’s nothing really new to review.”

Ortiz says that his No. 1 piece of advice when appealing is to include new, additional information.

For instance, get a letter from your doctor outlining restrictions or limitations. Send new or updated medical records such as test results. Include a statement from you — the claimant — describing what a typical day is like for you.

Ortiz stresses the importance of following the appeal process within the required time limit.

“If you don’t file a timely appeal,” he says, “then you may be barred from filing a lawsuit down the road.”

Medicare, Medicaid, and other public health insurance

Medicare and Medicaid are two main examples of public health insurance for MG. Eligibility criteria may include age, income, and disability status.

Medicare is a federal program for people 65 and older as well as some people with disabilities younger than 65. Eligibility is not based on your income.

If you are enrolled in Medicare, you can also consider purchasing Medigap. It is additional insurance you can buy from a private insurance company to cover certain out-of-pocket costs that aren’t covered by Medicare A or B, such as copayments for doctor’s visits and occupational or physical therapy.

Medicaid is a joint federal and state program for people and families with low incomes. States have their own eligibility criteria.

Parents of children with MG can look into the Children’s Health Insurance Program as a source of low-cost coverage if the family earns too much money to qualify for Medicaid.

You may also want to check if you qualify for Social Security Disability Insurance (SSDI). SSDI provides income support to those who qualify and are no longer able to work because of their MG diagnosis.

Financial assistance programs for MG

Living with MG can involve significant costs, which may not always be completely covered by insurance. You may want to look into other options for managing the financial aspects of your MG diagnosis, such as patient assistance programs.

“Having a rare disease is expensive,” says Allison Foss, the executive director of the Myasthenia Gravis Association in Kansas City, Missouri. “That’s the bottom line.”

A newly Food and Drug Administration-approved therapy for MG can lead to unexpected expenses as it may not be fully covered by insurance.

“One of the challenges is that people are really excited because they might get approved for a new therapy,” Foss says. “And then once their approval comes, they find out that they might be responsible for a huge copayment with their insurance, and they may not have the funds to cover the copayment.”

In such situations, Foss and her team assist people with MG by connecting them with organizations that can provide financial assistance.

Nonprofit and advocacy organizations

Several MG organizations and patient advocacy groups have programs that can help you with paying for MG medications. They may even cover other treatment costs.

• The Assistance Fund provides assistance with medical out-of-pocket costs by helping to pay for some prescription medications for MG.
• PAN Foundation supports people with MG by offering up to $6,200 per year, including for some medications.
• National Organization for Rare Disorders (NORD) can help pay for medications, diagnostic tests, and travel to participate in MG clinical trials.
• Conquer Myasthenia Gravis offers up to $1,000 per year to residents of Illinois, Indiana, and Wisconsin to cover the costs of medication, medical treatment, and at-home medical equipment  such as mobility aids.

Other sources of financial assistance

Pharmaceutical companies and state programs may also offer financial assistance for MG.

Some pharmaceutical companies have copay assistance programs for approved MG treatments. Ask your doctor or contact the companies directly through their websites.

State Pharmacy Assistance Programs, which are available in many states, may help with paying for prescription medications.

You can also consider leveraging crowdfunding platforms such as GoFundMe and Kickstarter or organize a fundraiser — such as a bake sale or a charity auction — to raise funds for treatment. You can promote these initiatives on social media.

Exploring clinical trial opportunities may help you save money while providing a chance to try a new treatment.

“If there is an opportunity to participate in a clinical trial, consider it, because that could help alleviate some of the costs associated with the therapies,” says Foss. “And if it works, then it’s like a double bonus.”

Websites for the Myasthenia Gravis Foundation of America and Myasthenia Gravis Association have sections about clinical trials with relevant contact information.

Budgeting tips for MG patients

Creating a healthcare budget and an emergency fund is essential for managing MG symptoms, unexpected flare-ups, and emergencies.

To make a healthcare budget, review last year’s healthcare expenses and put them in a spreadsheet. Based on those numbers, you can estimate how much you can expect to pay this year.

To gradually build a health emergency fund for the future, set aside a small amount of money every week or after every paycheck.

If you are currently working, consider making automatic deposits out of each paycheck into a separate bank account, ideally one that earns interest. This way, you won’t be tempted to dip into it but can still access when you need to.

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.