A diagnosis of ALS is devastating news for patients and their family. Dealing with the extensive costs associated with any chronic illness only adds additional burden and stress. Some care is covered by a patient’s health insurance but some costs are not considered customary or reasonable, or not approved by some carriers. In a recent study called the economic impact of amyotrophic lateral sclerosis: a systematic review by Matthew Gladman, and Lorne Zinman found that “costs associated with ALS were greater than other neurological diseases.” Another abstract indicated that there are few published reports on the cost of ALS care in the United States, but wanted to so examine those costs and identified strategies to assist patients with these expenses. The study: Financial cost of amyotrophic lateral sclerosis: A case study March 2015 concluded that:
Results showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558). In conclusion, this case study illustrates costs of care for ALS as a burden for patients that may impact treatment decisions. Charity organizations and insurance case-managers provide services to patients that can help reduce this burden. Costs for specific services as well as resources identified by this study offer physicians and other healthcare providers data-based cost of care information and strategies to share with their patients.
These costs and study conclusions are no big surprise to those with ALS. The popularity and national attention of the Ice Bucket Challenge focused on ALS and the economic need of patients of the disease. In the interim, ALS patients and their families need help living with the disease and the associated costs.
There are organizations out there with programs that will help patients find financial assistance.
Please see a listing of ALS Organizations that have grants and financial assistance programs listed:
ALS Guardian Angels
This is a 501(c ) (3) public charity offers grants to help ALS patients with expenses not covered by insurance or other reimbursement programs.
ALS Recovery Fund
The ALS Recovery Fund seeks to aid families impacted by ALS by providing financial assistance to those in need of equipment and/or supplies. The Patient Care Fund is available to all residents of Miami-Dade, Broward, Monroe and Palm Beach County diagnosed with ALS
Les Turner ALS Foundation
The Les Turner ALS Foundation offers a variety of financial assistance to ALS patients and their families. This includes the Ralph Russo Patient and Family Services Grant Program, the Dan Nelson Respite Care Grant Program, loan banks for augmentative communication devices and durable medical equipment and the Stuart Rosen ALS Transportation Fund.
This a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.
NeedyMeds' mission is to be the best source of accurate, comprehensive and up-to-date information on programs that help people facing problems paying for medications and health care; to assist those in need in applying to programs; and to provide health-related education using innovative methods.
NeedyMeds is funded by small grants, donations, sponsorships, subscriptions to PAPTracker, and syndication of some of our database information. NeedyMeds also works with the patient assistance programs of several pharmaceutical distributors.
The HealthWell Foundation reduces financial barriers to care for underinsured patients with chronic or life-threatening diseases.
We will continue to post resources to grants and assistance programs as they become available. If you find ones you wish to share, please submit them to be added to this list.