Insurance and financial resources for SMA treatment

Last updated Aug. 15, 2025, by Susie Strachan

Paying for Spinal muscular atrophy (SMA) treatment may be expensive, but financial planning can make it easier to manage your SMA treatment costs, so you can stress less about finances and focus more on your health.

Financial planning may help you cover the cost of medical equipment, physical therapy, short-term caregiver help, and special treatments like disease-modifying therapies.

Talking to a financial advisor or an SMA financial expert can help you learn about health insurance options and financial aid programs to help pay for your care.

The cost of SMA treatment

SMA treatment expenses may lead to financial strain and emotional stress.

They include medical costs — such as hospital stays, tests, medications, visits with your SMA care team, and rehabilitation — and nonmedical costs, such as travel for treatment and assistive devices to help with daily life.

The treatment price depends on your SMA symptoms and the type of SMA you have.

A 2021 review estimated that SMA type 1 treatment costs between $75,000 and $196,000 per year, and treating SMA types 2 and 3 costs between $27,000 to $82,000 per year.

These numbers do not include SMA drug coverage, which can add hundreds of thousands of dollars annually.

Calculating costs with a financial advisor

Jonathan Greeson, a licensed financial advisor who lives with SMA, says he uses several calculations to create financial plans for his clients.

For those living with a chronic disease such as SMA, he looks at direct medical costs, home and assistive care, and the cost of insurance.

“It’s a lot,” says the Muscular Dystrophy Association member, who offers financial services at his company, Jonathan Greeson Financial Planning, in Pikeville, North Carolina.

Greeson says there are a number of costs a person living with SMA might be facing, including about:

$50,000 a year for a single personal care assistant
$150,000 a year for three people to cover care 24 hours a day
$6,000 a year for insurance
$10,000 a year for SMA equipment and maintenance
$1,000 a month on a loan for a $90,000 accessible van.

“We’re already up to $178,000 per year, and we haven’t even talked about food and shelter yet,” he says.

In addition to direct expenses, the condition often brings indirect costs. These may include lost income if you or a family member have to work less or stop working altogether due to disease progression or to provide care.

Planning your finances

According to Greeson, financial planning for current and future care is essential, as SMA caregiving costs tend to get higher over time.

If you have SMA or care for a child with the condition, there are ways to get financial help. Look into the health insurance options and social assistance programs to support your current and future financial needs.

A financial advisor can guide you through these decisions.

When you meet with a financial advisor, they may:

look at your income and expenses
assess whether you or your child qualify for benefits, such as Medicaid, Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI)
suggest consulting an insurance agent or broker who specializes in long-term care planning.

Your financial advisor can also help you plan for your child’s financial future if they have SMA. For example, setting up a special needs trust can protect their access to social assistance benefits if they receive an inheritance or settlement.

If you’re a young adult with SMA living with your parents, there may be tax-related opportunities to consider. Greeson says something as simple as opting out of being claimed as a dependent on your parents’ taxes may help you qualify for assistance.

Another option is to consider an Achieving a Better Life Experience (ABLE) account, which may be a helpful tool for managing finances while preserving eligibility for government benefits. Money in an ABLE account can be used for healthcare, housing, transportation, education, and personal support services.

Potential pitfalls

As you plan your finances, be aware of potential pitfalls. Greeson highlights obstacles like asset limits and funding home care.

“For me, the greatest obstacles are asset limits and home care. Treatments, drugs, etc., are mostly covered by insurance, but independence at home is the biggest issue. These asset limits complicate planning because you must remain eligible for assistance to manage everyday needs. It’s a frustrating fine line to walk,” he says.

Finally, when seeking financial counseling, Greeson urges people to remember that everyone’s circumstances are unique. They should not rely solely on what worked for others.

“What worked for a friend may not work for you. Talk to your doctor, social workers, equipment vendors, lawyers, and accountants,” he says.

Greeson also recommends contacting the MDA Resource Center for general support and further guidance on financial matters.

Health insurance

When choosing health insurance, make sure it covers your SMA treatments, including therapies, medications, and healthcare services now and in the future.

Look for insurance policies that avoid gaps in coverage, high out-of-pocket costs, or limit your access to certain healthcare providers.

A few other questions to ask when considering SMA-treatment insurance plans include:

Does it cover SMA-specific therapies such as durable medical equipment like wheelchairs and respiratory devices?
If the plan is private and has coverage gaps, can supplemental Medicaid be used to help address exclusions for long-term care or therapy limits?
What are the additional costs associated with copays and deductibles, and are there maximum out-of-pocket limits?

For low-income people and families, the Children’s Health Insurance Program (CHIP) and Medicaid offer access to health insurance coverage.

Medicaid covers many services, including SMA-specific costs like durable medical equipment, therapies, and long-term care. CHIP provides coverage for children in families who earn too much for Medicaid, but still need financial assistance.

Beyond CHIP and Medicaid, there are other ways to secure health insurance coverage in the U.S., such as:

federal or state health insurance marketplaces for plans that address SMA-specific treatments
employer-sponsored plans, which may provide comprehensive coverage options.

Visit your health insurance company’s website or contact their customer service to learn about the appeals process, as you can challenge denials for services or equipment considered not medically necessary.

Assistance programs

Assistance programs may help cover your medical or non-medical expenses associated with living with SMA.

Many operate nationally and offer financial assistance for SMA treatments, including helping with copays, medications, and equipment costs.

Others are state-based or run by patient organizations dedicated to SMA and other health conditions that require treatment funding.

Veterans, for example, may have access to additional health benefits. If diagnosed with a progressive muscle atrophy like SMA within one year of discharge, you could qualify for financial aid for SMA through Veterans Affairs.

State assistance programs

People living with SMA may qualify for state programs offering financial assistance, medical support, home modifications, or assistive devices.

In some U.S. states, there are programs to help with the high costs of prescription medications, a common problem for those living with SMA.

Contact your state’s health department or human services to learn about these options.

You can also ask your healthcare provider or staff at an MDA care center or Cure SMA Care Center if they have information about financial assistance programs in your area.

Community assistance programs

Some organizations offer community assistance programs to help with expenses not covered by health insurance.

Pharmaceutical companies, state governments, and nonprofit organizations typically fund these programs, which may help cover specific medical treatment costs, such as prescription medications, associated healthcare expenses, and respite for caregivers.

For example, pharmaceutical companies often help cover the cost of their SMA medications. However, qualifying may depend on your income, insurance coverage, and medical needs.

Organizations like Cure SMA and the Muscular Dystrophy Association may also offer support, including grants and guidance in navigating SMA financial resources.

Further SMA financial assistance may also be found through these organizations:

SMA News Today 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.