The ALS Association

ALS Ice Bucket Challenge Progress

Patient Bill of Rights

The ALS Association's Patient Bill of Rights for People Living With ALS

The Amyotrophic Lateral Sclerosis Association (The ALS Association) prepared the Patient Bill of Rights to inform people living with ALS about their rights related to health care and health plan insurance coverage.* The ALS Association encourages people living with ALS to participate in the process of managing their health care because patients who are informed and empowered gain the greatest benefit from the health care system.

In order to navigate the health care system, patients need to understand their rights and obtain current, understandable information about ALS, the treatment and prognosis. In today's health care climate, cost control measures in most health plans present challenges to patients and their family members. The patient or his/her advocate should be proactive by appealing for and interceding to reach a solution if a person's health or safety is jeopardized by health plan policies, coverage limits, exclusions or restrictions.

Eight of the eleven rights are protected by law or federal or professional regulation. The three rights that are not protected are identified in this brochure with a parenthetical "not protected" reference.

While issues of cost and access in our society and health care system present barriers to achieving these rights, these barriers should not prevent the clear expression of the rights of people with ALS and the values these rights represent. The ALS Association's Patient Bill of Rights creates a vision of what the ALS community is striving to achieve for each person living with ALS.

*The term health plan is used throughout this document and refers broadly to indemnity insurers, managed care organizations, self funded employer-sponsored plans, Taft-Hartley trusts, church plans, association plans, State and local government employee programs, and public insurance programs such as Medicare and Medicaid.

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