ALS Roundtable Summaries

Since 2019, the ALS Roundtable Program has invited individuals reflecting diverse points of view, including people living with ALS, caregivers, clinicians, academic investigators, industry colleagues and government officials, for candid, facilitated discussions to find solutions to ALS-related challenges. Below you will find summaries from each of these meetings.

FALL 2023

Leveraging Real World ALS Data to Improve Combination Therapies and Prevent Complications

During this meeting, stakeholders discussed real-world data (RWD) and real-world evidence (RWE) in the context of ALS research and care, highlighting the need to use them to support more timely guidelines and treatment protocols/standard of care changes, inform better insurance coverage and payment policies, and improve the lives of people living with ALS. The use of RWD for regulatory decision-making was also discussed. The call to action for the ALS community was to work together to harness RWD for the benefit of all people living with ALS and to accelerate progress in the field.

Developing Action Plans to Expand Clinical Trial Capacity and Improve Inclusivity Across the ALS Community

This meeting provided a forum to dive deeper into next steps stemming from the two Roundtable meetings held in 2022. Representatives from the Inclusion and Clinical Trial Capacity Workings Groups presented their recommendations to participants, who then met in small groups to further prioritize and refine proposed actions and initiatives. Additionally, the meeting provided an opportunity to reflect on the progress that has been made in Roundtable focus areas since the program’s inception in 2019.

Increasing the Number of, and Access to, High-Quality Clinical Trials in ALS

This meeting focused on the need to build capacity for ALS clinical trials. Expert panelists discussed key aspects of clinical trial capacity in ALS, including trial infrastructure, community navigation and successful trial completion. Meeting participants then were asked to consider the Association’s unique role in expanding and sustaining the ALS clinical research ecosystem, identifying feasible and impactful actions to achieve the goal of “more, better, faster” clinical trials.

Developing Action Plans to Advance Inclusion in ALS Diagnosis, Care and Research

This meeting focused on the critically important topics of diversity, equity and inclusion (DEI) and how they intersect with the Association’s goal of making ALS a livable disease. During the Roundtable, participants increased their understanding of DEI and provided input on an action plan to promote inclusion in ALS diagnosis, care and research. These discussions highlighted multiple important themes and garnered recommendations for the Association to consider as it pursues actionable efforts to advance inclusion in all aspects of combatting ALS.

Strategic Priorities for ALS: A Community Discussion

During this meeting, the Association presented its goal of making ALS livable while urgently finding cures, with a special focus on the Association’s research strategic plan. Participants, which included representatives from industry, government and non-profits and people with ALS and caregivers, provided feedback on research goals and strategies. This input was leveraged to refine the Association’s research priorities and identify opportunities for collaboration across the ALS ecosystem.

Access to Essential Care, Services, and Supports

This meeting focused on improving access to essential care, services and supports for people living with ALS and their caregivers. As part of the discussion, participants shared the challenges and gaps they experienced when accessing clinical care and care services (e.g., in-home non-medical care), as well as physical supports (e.g., durable medical equipment and home modifications) and non-physical supports (e.g., financial, mental and emotional). Experts also gave a comprehensive overview of the different types of insurance and coverage, how people access them and how they are regulated.

During small group sessions, participants began to prioritize ideas and actions to move toward greater consistency of care across coverage models and federal programs. Discussions also included the development of an ALS disease journey map, which is intended to provide information about what to expect as the disease progresses and define key decision points, helping to prepare and empower people with ALS as they are faced with making critical decisions.

Decreasing ALS Complications

This meeting leveraged a novel analysis of Medicare claims data to better understand the types of complications and issues people living with ALS have confronted. The Roundtable discussion focused on approaches to reduce medical complications associated with ALS, such as pneumonia, bedsores, pain, and discomfort. Outcomes from this meeting included developing efforts to track admissions to ER and to the hospital for people living with ALS to help guide interventions to intervene/decrease complications.

Reducing Time to Diagnosis

The ALS Association convened its first-ever virtual ALS Roundtable and mapped out key challenges and solutions for reducing time to diagnosis for people with ALS. This issue was a priority identified at the Association’s March 2019 Roundtable. Outcomes from this meeting included establishment of two working groups – one focused on reducing time to diagnosis and one on genetic testing and counseling. Products that emerged from those efforts included a new thinkALS early diagnosis guide for clinicians (als.org/thinkals), a consensus statement on the benefits of timely diagnosis , a genetic testing and counseling awareness and education campaign, and a discussion guide about ALS genetics.

Access to New Therapies

This meeting zeroed in on ways to ensure that people with ALS have access to future drug therapies. We worked together to build a foundation from which the community ensure rapid adoption of new treatments for people with ALS. Roundtable participants agreed that there is a critical need to reduce current timing between regulatory approval of a new therapy and access to treatment for people with ALS. We collectively identified and prioritized challenges around coverage criteria, value, financial burden, authorization processes and administrative burden, and benefits navigation. Outcomes of this meeting included an ALS Focus survey centered on the insurance needs and financial burdens to better understand gaps in insurance coverage and subsequent financial impacts on families. The Association also forged a partnership with the Patient Advocate Foundation (PAF) to help people with ALS to access care and treatments recommended by their doctor.

Setting ALS Association Strategic Priorities

In preparation this meeting, the ALS Association surveyed participants from across the ALS ecosystem to identify priority topic areas for community focus in the near term. The top three topics from the survey were: Improving Time to Diagnosis, Alleviating Caregiver Burden and Enhancing Home Health became the focal points for the Roundtable agenda. Outcomes of this meeting provided input for the Association’s upcoming ALS Focus surveys and strategic planning efforts, along with identifying topic ideas for the next several Roundtable meetings.