As many families know, caring for someone with Duchenne muscular dystrophy (DMD) can be costly. The costs of medications, physical therapy, mobility aids, and long-term care for people living with DMD can add up, leading to financial concerns for many families.

DMD is a rare disease that causes muscle weakness and muscle-wasting. Thanks to advances in the treatment of this neuromuscular disorder, people with DMD are living longer than ever before. With a longer life expectancy and better quality of life, the costs of caring for a loved one with DMD are also extended.

Research shows that the medical costs for someone with DMD are roughly 10 times more expensive than the healthcare costs of the general population. The costs of care increase with age due to the increasing mobility-support needs and respiratory care as DMD progresses. If respiratory ventilation is needed, costs for DMD care can be more than $300,000 per year in some cases.

Medical costs for someone with DMD are roughly 10 times more expensive than the healthcare costs of the general population.

If you’re caring for a loved one with DMD, there are resources that may help reduce some of their healthcare costs. Be sure to talk to your healthcare team if you need help with the costs of DMD care.

Explore Private Health Insurance Options

Private health insurance policies — which are provided by private companies — can vary considerably. If you have or need private health insurance, it’s crucial to review the policy’s coverage carefully so you understand exactly what is covered and to what extent. There may be a better plan for DMD care that could save you money.

For instance, some policies may limit the amount of coverage for a particular aspect of DMD care. It’s important to have health insurance that covers the specific healthcare costs you may have for your loved one with DMD.

Parent Project Muscular Dystrophy (PPMD) has resources that can help you assess private insurance plans so that you understand the cost of health insurance premiums in relation to what is covered by the plan. You can always call a health insurance provider directly to discuss their plans in detail if you have questions related to coverage of DMD care.

Learn About Public Health Insurance Plans

Public insurance is provided through the government and can provide a range of benefits that may help make the costs of caring for someone with DMD more affordable. In the United States, public insurance for people with a disability, such as DMD, includes Medicaid and Medicare, as well as Social Security benefits through Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).

Children with disabilities such as DMD may be eligible for a Medicaid waiver, which would make them eligible for Medicaid even if their family is not considered low income.

Each of these programs has eligibility requirements based on factors such as disability, income, and age. The U.S. government defines disability with muscular dystrophy as having limited motor function in two limbs that severely limits the ability to stand, walk, or use one’s arms, or having limited physical capacity along with cognitive impairment that affects memory, processing of information, interacting with others, or self-management.

Medicaid and Medicaid Waivers

Medicaid is health insurance for people under the age of 65 and is generally based on personal or family income. It’s designed to provide health insurance for U.S. citizens and legal permanent residents with limited income. Benefits are provided by the U.S. federal government, with additional benefits supplemented by most states.

Children with disabilities such as DMD may be eligible for a Medicaid waiver, which would make them eligible for Medicaid even if their family is not considered low income. This type of waiver is designed to cover healthcare costs for children who may not be able to get adequate coverage from private insurance. Medicaid waivers may vary according to the state where you are a resident and can cover different aspects of care. It’s important to know that rules for eligibility and coverage may change at any time.

Supplemental Security Income

People with very low income or a disability may be eligible for SSI, which provides basic income on a monthly basis. In most states, people who receive SSI are also eligible for Medicaid.

Social Security Disability Insurance and Medicare

People who have a disability and a work history that has been taxed by the U.S. government may be eligible for SSDI. The disability must prevent or limit someone’s ability to work. SSDI provides monthly payment.

People are generally eligible for Medicare health insurance after 24 months on SSDI, even though Medicare is typically available only to people who are at least 65 years old. Medicare may help lower your costs of health insurance.

Certain Medical Costs May Be Eligible for Tax Deductions

If medical expenses for a loved one with DMD are more than 7.5 percent of your adjusted gross income (your total income minus certain deductions) in the U.S., you may be able to take a tax deduction. Calculating tax deductions can be complicated. You may want to consult with a tax accountant to determine if your DMD medical expenses are eligible for a tax deduction and how much you can legally deduct. Keep in mind that tax regulations can change from year to year.

The Parent Project Muscular Dystrophy has a wide range of listings for organizations that help families with the costs of caring for a loved one living with DMD.

You May Be Able To Get Financial Help Through a Nonprofit Organization

A number of nonprofit organizations provide financial support for the care of people with DMD. Support may come in the form of monetary grants or medical equipment for things such as:

• Home modifications
• Medical care
• Assistive devices (like ramps and scooters)
• Rehabilitative equipment
• Travel for healthcare

Some organizations, such as The Assistance Fund, may help with out-of-pocket costs for health insurance premiums, copays, deductibles, or coinsurance, among other expenses.

PPMD has a wide range of listings for organizations that help families with the costs of caring for a loved one living with DMD. You can contact individual organizations to learn more about their guidelines and find out if you may be eligible for assistance.

Consider Participating in a Clinical Trial

Clinical trials are research studies that test new treatments for diseases before they are approved by the U.S. Food and Drug Administration (FDA) for the general public. A clinical trial may give you or a loved one with DMD access to new treatment options, such as gene therapy, at little or no out-of-pocket cost, depending on the study. You can talk to your doctor about clinical trials that may be appropriate for you or a loved one with DMD.

Clinical trials are voluntary and are designed to protect the health and well-being of participants. But like any treatment, clinical trials come with risks of side effects, which you should discuss in detail with your healthcare provider before deciding to participate.

Get Help Finding Support

Managing the care of a loved one with DMD can be overwhelming in itself. Finding ways to cut the costs of DMD care may seem like added stress. But you don’t need to look for help on your own.

Start by talking to your healthcare team about how to make DMD care more affordable. They may be able to provide tips or contacts to get you started and can help you connect with a social worker. A social worker can help you find financial resources that may be right for you. A social worker can also help with paperwork you may need to complete to apply for financial support or other types of services that can help make DMD care less expensive.

Organizations such as the Muscular Dystrophy Association or CureDuchenne provide one-on-one consultations with staff members and specialists who can advise you on financial resources and help you plan for future expenses. Other members of myMDteam may be able to offer advice and support as well, based on their personal experience.

Reach out for assistance to help ensure you’re finding resources that can potentially make DMD care more affordable for you or your loved one.

Talk With Others Who Understand

On myMDteam, the social network for people with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

Have you found ways to make Duchenne muscular dystrophy care more affordable? What tips do you have for families worried about the costs of DMD care? Share your experience in the comments below, start a conversation by posting on your Activities page, or connect with like-minded members in Groups.