ALS Roundtable Program
Since 2019, the Association Roundtable Program has provided a forum for candid, facilitated discussions to help shape the Association’s strategic planning efforts and find solutions to make ALS a livable disease while urgently finding cures.
All Roundtable meetings include individuals with expertise and experience from a variety of sectors, including people living with ALS and caregivers, clinicians, academic investigators, industry colleagues, and government officials, who reflect diverse points of view on ALS-related issues. The group identifies challenges faced by people with ALS and their caregivers and then recommends action that are feasible and significantly impacts future care and treatment of the disease.
Benefits of Partnering in ALS Roundtables
All members of ALS Roundtables benefit from this collaborative forum, which promotes understanding and builds partnerships with industry peers, clinician and scientific leaders, policy makers, regulatory officials, public and private insurance representatives, ALS Association leadership, and — most importantly — people with ALS and their caregivers.
Driving Priority Programs
A seat at the Roundtable meetings offers sponsors a unique opportunity to shape and inform program-based solutions to challenges faced by the ALS community.
Informing ALS Research and Policy Agendas
Roundtable meetings inform agendas and decision making on topics that are critical to the ALS community, including clinical trial issues, regulatory and access evaluations, payment determinations for ALS therapies, and more.
Roundtable Advisory Panel
The Roundtable Advisory Panel provides input to the Association on the Roundtable program, including identifying potential topics for Roundtable meetings, and establishment and scope of work of specific topic-area working groups. The Panel is an ad hoc advisory group that consists of one representative per sponsor and convenes two to three times a year.
Roundtable meetings are focused on a clearly defined topic that is selected ahead of time with the collaboration of the Association staff and the Roundtable Advisory Panel. Invited participants for each Roundtable meeting include a broad array of stakeholders and subject matter experts who can provide input for the specified topic. People with ALS, caregivers, industry sponsors, government partners, and ALS Association staff attend each meeting. Meetings are professionally moderated to ensure everyone is heard. After each Roundtable meeting, an executive summary is distributed to participants. Where applicable, follow-up actions from Roundtable meetings include creation of working groups to develop tangible resources and tools that can be used by the community in addressing the topic.
While the Roundtable was initially launched as a program of in-person gatherings designed to enhance relationships and rapport among stakeholders, the COVID-19 pandemic prompted the 2020 and 2021 Roundtable meetings to “go virtual.” Though the format has changed, the level of engagement, participation and productivity remains exceptional, even allowing greater participation among members of the ALS community for whom travel is challenging.
ALS Roundtables Topics
Strategic Priorities for ALS: A Community Discussion
November 3, 2021, virtual
This meeting presented the Association’s goal to make ALS livable while urgently finding cures, with a special focus on the Association’s research strategic plan. The goal is to gain feedback on the Association’s research plan and refine priorities from diverse stakeholders, including industry, government, non-profit, and people with ALS and caregivers. Outcomes from this meeting are expected to include refinement of the Association’s research strategy and identification of collaboration opportunities across the ALS community.
Access to Essential Care, Services, and Supports
May 6 and 7, 2021, virtual
This meeting focused on ensuring access to essential care, services, and supports for people living with ALS and their caregivers. Here we discussed access of clinical care, 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 gave a comprehensive overview of the different types of insurance and coverage, how people access them, and how they are regulated.
In this meeting, we began to prioritize ideas and actions to move toward greater consistency across coverage models (and federal programs) with the VA system as a “best practice” long-term goal for everyone with ALS. We are currently working with health care experts on deciding next steps that are both feasible and impactful to the ALS community.
We also discussed developing of an ALS disease journey map. Its goal is to provide information about what to expect along the disease progression and to define key decision points, helping to prepare and empower people with ALS as they are faced with making critical decisions.
Decreasing ALS Complications
November 18 and 19, 2020, virtual
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
April 23 and May 13, 2020, virtual
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 (https://www.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
October 28, 2019, Washington, D.C.
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
March 29, 2019, Washington, D.C.
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.
Working Groups Stemming Out of ALS Roundtable Discussions
Stemming from past Roundtable meetings, four working groups were formed to delve deeper into each topic and put proposed solutions into action that are most feasible and impactful for the ALS community.
Past Working Groups:
- Increasing Clinical Trial Enrollment
- Time to Diagnosis
- Genetic Testing and Counseling
- ALS Patient Journey Map
Thank you to our Roundtable Sponsors!
The ALS Association is so thankful for the support of our valued industry partners to help shape our strategic planning efforts to continue identifying strategies that will impact our mission towards our goal to make ALS livable by 2030 while urgently finding cures.