SMA and Health Insurance

People with spinal muscular atrophy (SMA) often face high healthcare costs. These costs usually come from hospital visits, medical equipment, and prescription drugs.1

Healthcare in the United States can be complicated and expensive. Private and public insurance plans help cover costs of care for people with SMA. Talk to your employer, doctor, or SMA advocacy group about health insurance options for you.

What are my health insurance options?

There are 2 types of health insurance in the United States: private health plans and government-funded health plans. They work in different ways to help cover the cost of care for people with SMA. Certain people with SMA may be eligible for different programs.2

Most people with SMA and their families get healthcare coverage from private insurance or Medicaid. Some people with SMA may have coverage from both. This is because Medicaid may pay for costs not covered by commercial insurance.3

Private health plans

This is health coverage purchased from private companies. Usually, employers purchase coverage for their company. Employees then subscribe to coverage by paying some cost-sharing. Talk to your employer about health insurance coverage for you or your family.4

In some cases, coverage can be purchased directly through a broker or marketplace. This is called health insurance exchange.2

Government health plans

This is health coverage provided by a government program, such as Medicare and Medicaid. It is more common for people with SMA to have health insurance under Medicaid.3

Medicare is a federal government program that provides coverage for people over 65 years old or younger people with certain disabilities. People under 65 quality for Medicare after receiving Social Security Disability Insurance (SSDI) for 2 years.4,5

Having SMA does not automatically qualify you for SSDI benefits and Medicare. In order to qualify, you must have previously worked but can no longer work due to SMA. Apply online or call 1-800-633-4227 to find out if you are eligible.4,5

Medicaid is administered by individual states to provide coverage for people with low income or disabilities. Each state has its own guidelines to determine eligibility based on income, family status, and other factors. Find out if you are eligible online. You can contact your state Medicaid office to apply.4,5

The Children’s Health Insurance Program (CHIP) provides coverage for children with disabilities. CHIP can provide free or low-cost insurance for families ineligible for Medicaid but unable to afford private insurance.4

Tricare and Veteran’s Affairs (VA) are other government programs that provide coverage for U.S. military service members, veterans, and their families. Tricare may cover healthcare for children with SMA if a parent has Tricare coverage.4

What is included in health insurance plans?

Health plans vary widely in terms of their benefits. Find out what Medicaid covers in your state on the Medicaid website.

Every health plan has a “medical policy” that sets guidelines for treatment. Health plans can restrict treatments or procedures based on the medical policy. For example, some plans limit coverage based on the type of SMA or age. Some plans may also restrict benefits to certain doctors.2,4

Most health plans can help you afford medical costs for SMA, including:4

  • Hospital visits
  • Home healthcare
  • Doctor or nurse visits
  • Medical tests
  • Transportation to medical care

Health plans may also pay for other care related to SMA, including:4

  • Medicines
  • Occupational therapy
  • Breathing care
  • Physical therapy
  • Medical equipment

Talk to your doctor or insurance provider about questions about your specific benefits. If coverage is denied, your doctor can request a medical exception explaining why a treatment is necessary.

What costs are associated with health insurance?

Health plans vary widely in terms of costs. Insurance usually covers most of the costs of medical care and medicines. But people often pay some of the costs. This is referred to as “cost-sharing.” There are many types of cost-sharing. Here are a few costs that you may have to pay:2,4

  • Deductibles – The yearly amount you have to pay for services before your plan starts to pay
  • Coinsurance – The share or percentage of healthcare costs you pay
  • Copayment – The amount of money you pay for services covered by your plan

Some plans have different costs for in-network providers. Usually, people covered by Medicaid pay less in cost-sharing. Talk to your doctor or health insurance provider about the costs of healthcare in your plan.

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Written by: Matt Zajac | Last reviewed: August 2021