What Are the Costs of ALS Treatment?

The costs associated with ALS will vary depending on the treatment. According to one study in 2024, the cost of care for ALS for the duration of the disease was over $1.4 million dollars. Adjusted for inflation for 2024, the cost can total over $200,000 in annual costs over a 10-year period. Health insurance may cover some of the medical costs associated with an ALS diagnosis—however, most patients facing ALS will have additional out-of-pocket expenses to cover.

What Are the Common Out-of-Pocket Costs of ALS Treatment?

Most medical insurance will not cover all the costs associated with treating ALS, and the expenses add up rapidly.

Common out-of-pocket expenses for ALS include:

• Insurance Costs: Includes health insurance premiums, deductibles, co-payments, and medications.
• Medications and Therapies: Medications can cost thousands annually, while some rehabilitative therapies and experimental treatments are not covered by insurance and add several hundred dollars per month.
• Travel and Relocation Expenses: Costs for travel (mileage, tolls, parking), temporary housing, and moving to be closer to treatment centers.
• Equipment and Home Modifications: Expenses for specialized wheelchairs, assistive technology, home health care, home modifications, and specially equipped vehicles.

Which ALS Costs Are Not Covered By Insurance?

Insurance coverage for ALS-related expenses often excludes experimental treatments, alternative therapies, and some home modifications, such as accessibility renovations.

Some treatment options for ALS not covered by insurance may include:

• Medications
• Heat or Whirlpool Therapy
• Exercise and Physical Therapy
• Nutritional Counseling
• Speech Therapy and Communication Training
• Assistive Devices
• Special Equipment

Long-term assisted care may also not be fully covered, along with respite care for family caregivers. Non-prescription assistive devices, out-of-network services, and transportation costs for non-emergency medical needs may result in higher out-of-pocket expenses.

Securing Financial Assistance for Treating ALS

Establishing greater support for ALS patients is part of our nonprofit’s mission. Through community-based fundraising, Help Hope Live is dedicated to helping those in need to raise funds for medical treatment and related costs associated with an ALS diagnosis.

How Does ALS Fundraising Work?

The fundraising process with our nonprofit starts with a few simple steps:

1. Complete a short campaign request at helphopelive.org/get-started/apply
2. We will contact you if community-based fundraising is a possible option
3. You’ll be paired with a Client Services Coordinator
4. Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and much more

How Is Help Hope Live Different from GoFundMe?

Help Hope Live differs from GoFundMe by:

• Verifying your medical need for complete donor confidence
• Enabling donations that are tax-deductible
• Providing one-on-one fundraising help
• Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you)
• Paying bills directly, allowing you to focus on treatment and recovery

We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.

Does Community-Based Fundraising Work?

Here are a few ALS fundraising success stories from the Help Hope Live community:

“This wheelchair accessible vehicle will provide her with the ability to get out, enjoy life, and maintain the positivity necessary to face her life with ALS.”

Marlena Crispell was diagnosed with ALS in 2021. While holding out hope for long-term treatment pathways, Marlena and her husband are fundraising with Help Hope Live for the ALS-related expenses insurance will not cover, including an accessible vehicle and home modifications to provide access to her bedroom and bathroom.

They are more than halfway to their initial fundraising goal of $40,000.

"Recently Kristy received her white wheelchair and has named it the Roadrunner!"

Kristina “Kristy” Cosden lost most of her mobility and began using a wheelchair within just six months of being diagnosed with ALS. A fundraising campaign in her honor with Help Hope Live raised over $10,900 in just two weeks.