ALS Society of Alberta Raises Concerns About MAID Bill 18

The ALS Society of Alberta has raised concerns about proposed MAID Bill 18 and its impact on people living with ALS. Learn what this means for end-of-life care, autonomy, and policy in Alberta.

The ALS Society of Alberta is calling on the Government of Alberta to carefully review proposed changes to Medical Assistance in Dying (MAID) legislation (Bill 18) and consider the unintended impact on people living with ALS and other progressive neurological diseases.

ALS is a terminal illness marked by ongoing, irreversible loss of mobility, speech, and independence. While individuals may live for years after diagnosis, the progression is profound and unpredictable. This creates unique and complex challenges when making decisions about end-of-life care.

Protecting Choice for People Living with ALS

At the ALS Society of Alberta, we support every individual’s right to make informed decisions about their care, including at the end of life.

That means access to:

• Clear, accurate information
• Compassionate support
• The ability to plan ahead

But meaningful choice requires more than access. It requires policies that reflect how progressive diseases like ALS actually unfold.

Key Concerns with MAID Bill 18

The proposed changes to MAID legislation may unintentionally create barriers for people living with ALS.

Our concerns include:

• Eligibility tied to predictability of death rather than lived experience of suffering
• Limitations on advance care planning, despite likely loss of decision-making capacity
• Reduced access to information needed for fully informed decisions
• Requirements for family presence at time of provision, which may not reflect individual circumstances

These changes risk excluding individuals whose disease progression does not align with narrow timelines or criteria. 

Why This Matters in Alberta

For people living with ALS, dignity, autonomy, and timing are not abstract concepts — they are part of daily life.

Policies that prioritize timelines over lived experience risk creating inequities in access to care.

Legislation must reflect the realities of progressive illness and ensure that all Albertans can make deeply personal decisions about their care.

Our Call to Action

The ALS Society of Alberta is urging the Government of Alberta to:

• Engage directly with people living with ALS
• Consult neurological disease organizations and clinical experts
• Ensure safeguards do not create unintended barriers
• Protect access to advance care planning

Thoughtful, inclusive policy leads to better outcomes for Albertans.

Read the Full Letter

Our formal submission to the Honourable Mickey Amery, Minister of Justice, outlines these concerns in detail. Read the full letter here.