MDA’s Guide to the Affordable Care Act (ACA)

For many people living with neuromuscular diseases, access to reliable health insurance can be the difference between receiving life-changing care and going without it. The Affordable Care Act (ACA), signed into law in 2010, created stronger protections for people in the United States living with disabilities, chronic illnesses, and preexisting conditions.

Understanding the ACA can help people living with neuromuscular diseases make informed decisions, advocate for their healthcare needs, and access the protections the law provides.

What is the ACA?

The ACA (sometimes called Obamacare because it was enacted during Barack Obama’s presidency) is a federal law designed to expand access to health insurance and strengthen safeguards for patients. The law also created a marketplace where people could purchase and enroll in ACA-compliant healthcare plans.

“The ACA was intended to make health insurance work better,” says Justin Giovannelli, Associate Research Professor at Georgetown University’s Center on Health Insurance Reforms. “That meant making coverage more accessible, more affordable, and more protective for people who previously struggled to obtain insurance.”

Before the ACA, many people with chronic illnesses faced major barriers to obtaining affordable, comprehensive health insurance.

“People could be denied coverage for preexisting conditions ranging from pregnancy to something as serious as a neuromuscular disease,” says Joel Cartner, MDA’s Director of Access Policy. “The ability to get robust coverage that wasn’t reliant on an employer or a social program like Medicaid was transformational.”

Who is protected?

The ACA protects people enrolled in ACA-compliant health insurance plans, including individuals with preexisting conditions, children who remain on a parent’s insurance plan until age 26, and people purchasing coverage through the individual marketplace.

For the neuromuscular disease community, these protections are especially important as preexisting conditions include physical disabilities, mobility limitations, chronic illnesses, and progressive neuromuscular conditions.

To understand how the law protects you, it helps to separate the ACA itself from the insurance marketplace it created.

The law

The ACA is the nationwide legal framework that establishes important consumer protections and insurance rules. These requirements apply to most major health insurance plans, including coverage offered through employers, individual insurance plans, and many government-sponsored programs.

The marketplace

To help people who do not have access to employer-sponsored coverage, the ACA created health insurance marketplaces, including Healthcare.gov and state-run exchanges. When people say they purchased an “Obamacare plan,” they usually mean they bought individual health insurance through one of these marketplaces.

“These are government-operated websites, either by the federal government or by states, depending on where you live, where you can buy coverage directly from an insurance company,” Justin says.

Whether you get health insurance through an employer or purchase it yourself through a marketplace, many of the ACA’s most important consumer protections — such as coverage for people with preexisting conditions and the ban on lifetime dollar limits for essential health benefits — apply to your coverage.

However, not all health insurance is subject to the ACA’s full protections. These include:

• Short-term health insurance: Temporary plans designed to help cover gaps in coverage, such as between jobs. These plans generally are not required to follow all ACA consumer protection rules.
• Healthcare sharing ministries (HCSMs): Faith-based organizations in which members contribute funds to help pay one another’s medical expenses. Because they are not legally considered health insurance, they are not subject to ACA insurance requirements.
• Fixed-indemnity plans: Supplemental policies that are not intended to provide comprehensive health insurance. These plans pay a predetermined cash benefit for a specific illness, injury, or hospital stay.
• Farm bureau plans: In some states, health benefits sponsored by farm bureaus are exempt from certain ACA requirements.

For people living with chronic or complex medical conditions, understanding whether a plan is ACA-compliant is especially important, since ACA protections can affect access to coverage, benefits, and financial protections.

Key parts of the ACA

The ACA provides critical protections that help millions of Americans access the care they need. These important safeguards include:

Protections for preexisting conditions

One of the ACA’s most important provisions is its protection for people with preexisting conditions. Insurance companies offering ACA-compliant plans must provide coverage regardless of a person’s medical history.

This means a person living with muscular dystrophy, spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS), or other neuromuscular diseases cannot legally be denied coverage because of their diagnosis.

“They have to sell to anyone who’s interested in buying a plan, and they can’t say, ‘We’re not going to cover XYZ condition,’” Justin says.

The ACA also prevents insurers from charging people higher premiums because they have a preexisting condition. However, marketplace plans are offered at different coverage levels — often referred to as bronze, silver, gold, and platinum tiers — which vary in premiums and out-of-pocket costs. As a result, people with complex healthcare needs may choose more expensive plans because they offer more comprehensive coverage.

Essential health benefits

Another significant part of the law is the coverage of essential health benefits — a core package of 10 broad medical categories that insurance plans must cover, ensuring policies provide comprehensive care rather than bare-bones coverage:

• Ambulatory patient services (outpatient care)
• Emergency services
• Hospitalization
• Laboratory services
• Maternity and newborn care
• Mental health and substance use disorder services
• Pediatric services (including oral and vision care)
• Prescription drugs
• Preventive and wellness services and chronic disease management
• Rehabilitative and habilitative services and devices

“This ensures coverage of many benefits, like access to ​specialty care and therapies, that our community really needs,” Joel says.

However, ACA protections do not guarantee coverage of every specific treatment or medication. While ACA-compliant plans generally must cover prescription drugs as an essential health benefit, insurers can still use formularies, prior authorization requirements, and other coverage rules to determine which medications are covered and under what circumstances. Patients and their providers sometimes need to request exceptions or file appeals to obtain coverage for certain therapies.

No annual or lifetime caps

Before the ACA, some insurance plans capped how much they would pay for medical care each year or over a person’s lifetime. For people with complex medical needs, those limits could be reached quickly. The ACA eliminated annual and lifetime coverage caps for essential health benefits across nearly all job-based and marketplace plans, helping ensure people can continue receiving care without fear of hitting a financial limit.

Medicaid expansion

The ACA expanded Medicaid eligibility in many states, allowing more low-income adults to qualify for comprehensive health coverage. In states that adopted the expansion, adults with incomes up to 138% of the federal poverty level (about $22,025 per year in 2026) became eligible for Medicaid, even if they did not have children or qualify because of a disability.

For many people with neuromuscular diseases or disabilities, Medicaid is important for covering long-term services and supports that private insurance may not fully cover, including home- and community-based services and personal care assistance.

Before the law, many adults who did not receive employer-sponsored health insurance and did not meet strict Medicaid eligibility requirements often had few affordable coverage options.

“Medicaid expansion became a key source of coverage for millions of people and one of the ACA’s most significant reforms, particularly for people with chronic illnesses or complex medical needs who require ongoing care and support services,” Justin says.

While most states adopted Medicaid expansion, some — such as Texas and Florida — chose not to participate, creating differences in eligibility depending on where someone lives. Still, Justin says, “Participating states have seen a lot of people enrolling and using their care and getting good access to coverage and care as a result.”

Financial assistance for marketplace coverage

The ACA also created financial assistance programs to help many people afford health insurance that they purchased through the marketplace. Depending on household income, some individuals and families may qualify for subsidies that lower monthly premiums or reduce out-of-pocket healthcare costs. These subsidies can help people who earn too much to qualify for Medicaid but still need assistance paying for private insurance.

How the ACA works

From enrolling in coverage to accessing specialist care and ongoing treatments, the ACA’s protections affect nearly every stage of the healthcare experience.

Someone who loses employer-sponsored insurance because of a job change, early retirement, or reduced work hours can purchase coverage through Healthcare.gov or a state marketplace instead of going uninsured. On Healthcare.gov, consumers can compare plans, review monthly premiums and out-of-pocket costs, and determine whether they qualify for financial assistance.

For people living with neuromuscular diseases and their caregivers, this access to affordable coverage can be especially important.

Trained professionals known as ACA navigators are available to help consumers understand insurance options and enroll in marketplace plans. These experts can help people compare costs, review benefits, and identify plans that best fit their medical needs.

“Lean on your navigators if you’re looking to buy into an ACA plan,” Joel says.

To find a navigator, visit Healthcare.gov or your state’s ACA marketplace website.

Asserting your rights

People can still encounter coverage challenges under ACA plans, including prior authorization requirements, medical necessity disputes, and restrictions on certain treatments. Finding an affordable plan also remains a challenge for some families.

“Along with affordability, it’s important to note that these insurance plans, while they are held to higher standards in terms of essential health benefits, are still run by private insurance companies,” Joel says. “Because of that, we do still see discriminatory plan design, we see freezing out of coverage of certain therapies and things like that.”

Experts say that understanding your rights — including how to appeal insurance denials and report potential violations — is essential to fully benefiting from the law’s protections.

“One thing I’m constantly reminding people is that no denial is final until it actually is,” Joel says. He notes that few people appeal insurance denials, even though appeals can be effective. According to health policy research organization KFF, Healthcare.gov consumers appealed less than 1% of denied in-network claims in 2021; however, about 40% of appealed denials were overturned.

If you believe your rights under the ACA have been violated, you can:

• Appeal the insurance company’s decision. Most health plans are required to provide an internal appeals process so you can challenge a denial of coverage or payment.
• Request an independent external review. If your insurer upholds the denial, you may have the right to have the decision reviewed by an independent third party that is not affiliated with the insurance company. The external reviewer’s decision is generally binding on the insurer. Information about how to request an external review is typically included in the denial notice or provided by the insurer after an internal appeal is exhausted. Depending on the state and type of health plan, the review may be administered by the state insurance department or by an independent review organization.
• Contact your state insurance department for assistance or to file a complaint. Most state insurance departments have consumer assistance programs that help people understand their coverage rights, investigate complaints, and resolve disputes with insurers. Contact information can typically be found by searching online for your state’s Department of Insurance or Insurance Commissioner.
• Reach out to advocacy organizations, including MDA, for support navigating the process. MDA’s Advocacy team and the Resource Center can help connect individuals with resources and guidance.

The ACA has dramatically improved access to healthcare for more than a decade. Experts note that staying informed about national and state policies affecting Medicaid eligibility and knowing how to advocate for your rights can help you protect your access to healthcare and insurance coverage.

ACA resources

People seeking more information about the ACA or assistance with navigating insurance options can explore the following resources:

• Visit gov to compare ACA marketplace plans, explore financial assistance options, and enroll in coverage.
• Contact your state insurance department for help with insurance complaints, appeals, independent external reviews, and questions about coverage rights and consumer protections.
• Work with an ACA navigator to compare insurance plans, understand eligibility for financial assistance, and enroll in marketplace coverage through Healthcare.gov or your state marketplace.
• Reach out to MDA’s Advocacy team and Resource Center for guidance and support navigating healthcare access and insurance challenges within the neuromuscular disease community.
• Connect with the National Disability Rights Network to find your state’s Protection and Advocacy agency and learn more about disability rights protections.
• Explore resources from the Disability Rights Education & Defense Fund for disability rights education, policy information, and legal advocacy support.