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Spinal Muscular Atrophy (SMA) is a disease affecting motor neurons that can lead to muscular weakness and difficulty moving.
Medicare can cover physical therapy, occupational therapy, and neurology services to help slow the progression of the disease.
Depending on where you live, a Medicare Advantage plan may be able to help.
That’s approximately 13,000 Americans living with this disease. Having an uncommon illness can be a challenge, especially in healthcare. It may be difficult to find doctors who have even heard of your condition, let alone one who is experienced in treating it. Finding the care you need can be a challenge. Fortunately, Original Medicare and Medicare Advantage can help cover your treatment costs and connect you with the care you need. However, depending on where you live, your plan may come with some major caveats.
Spinal Muscular Atrophy (SMA) is a genetic condition that affects the body’s ability to control muscles by destroying neurons in the spinal cord and brainstem. Muscle atrophy refers to the loss of muscle mass, or “wasting”, causing the muscles to grow weak. In SMA, this primarily affects the upper arms, torso, and legs. However, these are not the only muscles SMA affects. The muscles used for head and neck control, swallowing, and even breathing can be affected, making SMA a potentially life-threatening condition if left untreated.
SMA occurs due to a chromosome mutation that affects the body’s ability to produce specific proteins. Without these proteins, lower motor neurons in the spinal cord can’t properly function. SMA can manifest at any age: some people are born with it, while others develop it during childhood. However, most adults living with SMA are diagnosed with Type IV – Adult Onset Muscular Spinal Dystrophy. This disease is marked by a gradual progression of symptoms, including:
Progressive limb weakness, which usually begins in the thighs or upper arms
Slow, but progressive loss of muscle mass
Gradual decrease in the ability to walk or move
Cramping or muscle stiffness
Other forms of adult-onset SMA, such as Kennedy’s Syndrome, can first manifest in the face, tongue, and jaw. However, this is less common.
SMA is typically diagnosed through genetic testing, a muscle biopsy, or an electromyogram (EMG). The latter tests are slightly invasive outpatient procedures in which a small sample of muscle tissue is taken for testing, or tiny needles are inserted into the muscles to test electrical activity. However, these tests are needed to rule out other, similarly presenting conditions.
SMA is, unfortunately, a chronic condition. There currently is no cure, though steps can be taken to slow the disease’s progression. Often, this involves cooperation between several healthcare providers: a neurologist to monitor the progression of the disease, a physical therapist to help maintain muscle strength, an occupational therapist to help you maintain your ability to do everyday tasks, and a speech language pathologist to manage any complications that arise due to weakness in the face, mouth, and throat.
Breathing therapy may also be prescribed to counteract diaphragm weakness. Depending on the severity of your symptoms, you may also need in-home services for some of these services. You will also need durable medical equipment, such as wheelchairs, as well as prescription medications.
These services are all covered under various Medicare programs. If you are under 65 and have been on disability insurance due to SMA for over two years, you also qualify for Medicare and should receive information about your enrollment in the mail.
You have options for Medicare. You can rely on Original Medicare (Parts A and B), supplement Original Medicare with a Medigap or Medicare Part D plan, or replace it entirely with a Medicare Part C: Medicare Advantage plan. Each type of plan covers different aspects of healthcare, and knowing the difference between them is critical for ensuring continuity of care.
Original Medicare (Parts A and B) covers most SMA-related services, including hospital visits, therapy, and durable medical equipment. Under Original Medicare, you will usually receive a 20 percent copayment for services after meeting your deductible, with no cap on how much you pay out-of-pocket. A Medicare Supplement Insurance (Medigap) plan can reduce the cost-sharing burden by covering your deductible and coinsurance in many cases.
Original Medicare does not cover prescription medications unless these medications are administered by a medical professional. You’ll need a Medicare Part D plan for medications taken at home. These plans have varying price points and cover various medications, so be sure to find one that covers the medications you need.
A Medicare Advantage plan covers everything Original Medicare does and may include prescription drug benefits and reduced cost-sharing obligations. They can also provide coverage for services like meal delivery and transportation to and from appointments. However, they’re not always the best fit.
The most significant advantage Original Medicare has over Medicare Advantage is its network: as a government program, Original Medicare is accepted almost everywhere. For a disease as uncommon as SMA, this can be a critical benefit. While the basic medical services needed for SMA are available almost everywhere in the country, specialized services are much less common. You may have to travel to a major city to meet with your neurologist, who might not even be in the same state.
As a private insurance option, Medicare Advantage has a much smaller network. While certain larger providers may have nationwide coverage, others are limited to specific geographic regions. They may provide limited coverage if you travel outside those regions, but you may still find that your preferred providers aren’t in the network.
For more common conditions, like cancer and diabetes, this issue is handled by Special Needs Plans (SNPs), which build a coordinated team of experienced care providers and curate a catalog of condition-specific services. However, as SMA affects such a small portion of the population, no SNP currently exists for the condition.
Medicare Advantage can still be a strong choice if you have a strong health care program in your area, but you should research what insurance your providers take before committing. If you’re not planning on using extra benefits like vision, dental, or transportation, you may be better off combining Original Medicare with Medigap and Medicare Part D: it can be slightly more expensive overall but may be better suited for those you require coverage nationwide.
If you’re uncertain about what option is best for you, our licensed insurance agents can help. They’re experts at all aspects of Medicare, be it a Medicare Advantage Plan, Medigap, or Medicare Part D. Call our licensed insurance agents at (800) 950-0608 or use our free quoting tool below to begin your search today.