Global Respiratory Summit 2023 Banner

The 2022 Global Respiratory Summit will be held in a hybrid format (virtually and in person) on Friday, September 2nd, 2022, in the SB Plaza Europa Hotel, Barcelona (Spain), and live-streaming format. The GRS provides the platform for patient organizations to raise their voice for urgent issues, share best practices, and come together with respiratory advocacy organizations.

The 2022 Global Respiratory Summit was the first in-person GRS since 2019. A hybrid meeting was held which included 32 member organizations attending the event in Barcelona, Spain with 20 members attending online.

Summary

GAAPP President Tonya Winders began the meeting with an annual update on the work of GAAPP since the previous meeting. GAAPP has nearly doubled in size since 2021, with 82 members worldwide.

Tonya presented the following projects and achievements that are relevant for all the organizations working in the respiratory field:

Asthma

Atopic Dermatitis

COPD

Chronic Urticaria

Eosinophilic Esophagitis

  • EoE Knowledge Exchange

Eosinophil-Driven Diseases

Tonya Winders & Project Manager Victor Gascon Moreno presented the current ongoing advocacy projects on COPD, AD & Asthma. One of them (Managing Your Asthma) was launched during the session. The current open communication grants (World Eczema Day & World Lung Day) were presented, and members were encouraged to participate and join the advocacy efforts.

A summary was provided on the poster to be presented at ERS, 2022 Asthma in Review: The patient perspective. Another presentation at ERS was a joint project with the COPD Foundation: the survey to collect responses to the patient´s opinion of tobacco companies purchasing medical device manufacturers that treat respiratory diseases in English, Spanish, and German. A paper with the results and analysis was co-authored and published in the Thorax journal and was presented by Ruth Tal Singer as late-breaking news at the ERS conference.

Tonya Winders showcased how GAAPP is a co-author of more than 20 peer-reviewed papers published.

GAAPP reminded its members of the opportunities to request for Project Funding and how GAAPP can fund up to 25% of their projects.

Partnerships with GARD, GINA, and GOLD remain strong with GAAPP identified as the global representative and voice. GAAPP has also been a charter member of the Respiratory Right Care Summit and the International Respiratory Coalition (IRC). An IRC session was also held during ERS with GAAPP President Tonya Winders participating.

Tonya concluded the introductions with an update from the GAAPP offices. She shared that Otto Spranger, a founding member of GAAPP and long-time Treasurer of the organization, would retire in December 2022. She also acknowledged the continued accomplishments of Project Lead Victor Gascon Moreno and the addition of Executive Director Lindsay De Santis to the GAAPP team.

The Global Respiratory Summit provides the opportunity for GAAPP member organizations to work collaboratively to establish a unified work plan. In 2022, the breakout sessions were divided into two segments. The first was focused on the disease state, and the second was segmented by region.

Disease State Breakout groups were asked to define the following:

  1. One priority message is to drive awareness of the disease.
  2. One priority unmet need/message in the education of disease to patients and healthcare professionals.
  3. One priority policy change is needed to improve outcomes.

Regional Breakout groups were asked to define the following:

  1. What is the biggest challenge in the region for airways, atopic and allergic diseases?
  2. Develop ideas to overcome the said challenge(s) that can be carried out by the patient community
  3. Identify possible regional alliances, and resources needed to carry out plans

COPD BREAKOUT

Awareness

  • What does COPD stand for? What is it? Does not translate into all languages. Although we cannot tackle this barrier, we must drive awareness of what it is to ensure that the public is educated that this is not specifically a “smokers’ disease” or for the elderly only.
    • Proposed “It Could Be You” campaign
  • Promote awareness that COPD is the third leading cause of death worldwide
  • Evaluate the status quo in your country using the 6 principles of the patient charter.

Unmet Needs/ Messaging

  • Address the Stigma; Understanding Your Symptoms; Individual Care Plans
  • Reflective Listening for providers
  • Spirometry Testing as a part of annual screening

Policy

  • Need a national plan for COPD (approved by the government)
    • a. Screening and Spirometry as part of wellness exams (CAPTURE tool in US)
  • Increase Tobacco taxing to reduce access and increase cessation resources

ASTHMA BREAKOUT

Awareness

  • Who is our target audience – undiagnosed and untreated patient community
  • Breathlessness in NOT NORMAL
  • Don’t take Breathe for granted
  • Education – Patients and Primary Care
  • Patient friendly language and tools for symptom management
  • Need for screening and early diagnosis
  • Over-reliance (SABA, OCS, comfort with breathlessness)
  • Toolkit harms of over-reliance: What does “good care” look like? Charter, standards, video. What are the harms of over-reliance, videos, and checklists (pulsar, ACT, etc.).

Unmet Needs/ Messaging

  • Patient Advocates and families educate from their perspective to the public, policy and decision-makers, industry, and providers (primary care and allied healthcare professionals)
  • Show diverse populations that represent asthma patients
  • Build partnerships with other organizations and industries to amplify messages through social media
  • National Action Plan for Lung Health

Policy

  • WHO has SABA alone
  • Climate Issue
  • Workforce development
  • Why isn’t the lung prioritized (Cancer, Heart…why not lung?). Should be in the top 3
  • National Asthma/Lung Plan (Asthma, COPD, Lung) Registry, Spirometry, Pharmacy flag system (only 4 countries represented had action plans at the national/governmental level) Talk about Lung as a broader term. ASK: every country has a national action plan – tactics will look different based on location

RARE DISEASE BREAKOUT (atopic, immunologic, and respiratory)

Awareness

  • Rare diseases shouldn’t deprive anyone of fundamental human rights. We should never abandon the fight for the QoL and inclusivity and recognition of all conditions and patient journeys.
  • Not all disabilities are visible. Rare diseases are often misrepresented in age and gender, with a bias for older people to be the face of the causes in marketing campaigns.
  • Accurate and early diagnosis, access to innovative systems like digital health and online monitoring, and reimbursement of treatment.

Unmet Needs/ Messaging

  • Primary Care, Pediatricians & Specialist, should work together to develop programs and screening tools for the early detection of rare diseases in children.
  • Basic knowledge should be part of the undergraduate curriculum for MD students as there is currently no broad access to this knowledge during university medicine studies in most countries.
  • Scientific Societies in LMICs should be more patient-centric and collaborate more with PAGs.
  • Translate and provide more comprehensive access to the guidelines to providers.
  • When advocating to HCPs, discuss individual diseases rather than the concept of “rare diseases”. For public awareness and advocacy in Policy Making, grouping all rare diseases make more sense to give more significant numbers when it comes to policy-making and general advocacy.

Policy

  • Every country should develop a registry for each rare disease supported by PAGs and HCPs in a patient-centric manner. If there are multiple registries (e.g., scientific society and government registries), the data should be pooled, standardized, and shared to become a single registry. Knowing the exact numbers and data will help us support treatment research and have accurate numbers to present to the HTAs nationally.
  • Most LMICs lack proper access to diagnosis, treatment, and support for rare diseases. Urgent progress is needed to avoid unnecessary deaths.
  • Access to Digital Health and Innovative Systems would help to support patients that lack proper access to medical support due to socio-demographic factors like lack of money or transport to access RD specialists in rural areas.

ACTION: Create an atopic, allergic, and respiratory rare disease patient navigator to provide basic information on the significant rare disease in our portfolio to patients.

APAC + Middle East

Challenges

  • Rapid increase in the number of patients in allergies and atopy. 1100% Disease prevalence is rising.
  • Lack of facilities for allergic disorder diagnostics and standards of care. (Skin prick test not available in most areas of Asia and Africa).
  • Nature of the disease and education, what is the care plan. Inadequate information shared with the provider.
  • No national policy or integrated effort.

Solutions

  • NGO and Patient advocacy integration. How do we strengthen patient organization? Improve communications, and activities, and broaden membership base.
  • Global Umbrella – GAAPP to be the conduit
  • Presence at scientific meetings for influence

Collaborations

  • Regional alliances with scientific fraternities
  • Bring in all interested parties. Asia, Middle East, Africa – in that order as a phased approach.

Southeast Europe

Challenges

  • Public Health System – barrier to access, diagnostic tools, medications, specialty care
  • Patient Rights Awareness
  • Misuse of Medication, Misinformation, Language barriers
  • No Quality Standards; No national plans

Solutions

  • Patient/HCP/Industry Collaboration to get priority
  • National Plan – Get EML expanded
  • Workforce development – HCP education and public health (GINA/GOLD)
  • Registry Data
  • Patient Awareness Campaigns (Rights, Options, Standards)
  • Simplify, unify, and translate key messages
  • Using technology, like Mobile applications, to provide this information and incentivizing interactions

Collaborations

  • GAAPP creates a regional alliance of Southeast Europe, needs to greater define the specific area.
  • Sample National Asthma & Allergy plan tailored to each country’s system
  • Patient advocate/HCP association collaborations – find common ground

EU

Challenges

  • Understanding the impact and importance of respiratory health
  • Sufficient medical care and access
  • Psychological support – treatment and action plans

Solutions

  • Understanding the impact and importance of respiratory health
  • Sufficient medical care and access
  • Psychological support – treatment and action plans

Collaborations

  • Coalitions of HCP, PAGs, Payers (define criteria) – GAAPP to coordinate
  • Change policy from regional to national

IBERO-AMERICA

Challenges

  • Lack of medical services
  • Lack of access to any form of medical care (LICs)
  • Early diagnosis is still behind the plan
  • Time of consultation with HCPs is too short
  • Lack of access to Guidelines (GINA / GOLD / EAACI)
  • There is a need to implement the humanitarian/humanizing approach to the treatment that needs to be thoughts in UNI to MD students.
  • Misinformation on the topic of sports and CRDs, most patients think it’s harmful.

Solutions

  • Teach MD students and educate them on the existing guidelines & protocols
  • Education of Personal Health issues in schools grouped by age ranges (6-8, 8-13, >13)
  • Improve neonatally and children screening for rare diseases to improve early diagnosis and reduce mortality amongst children and babies.
  • Promote the “Patient Schools” in the countries where they exist.
  • Work on substantially improving rural access to health care, patient empowerment, digital health access, and transportation access to medical centers and specialists when needed.

Collaborations

  • All Spanish / Portuguese speaking PAGs should share resources and educational tools with each other to supply each other with what is missing in their respective communities.
  • Spain & Portugal PAGs should engage more with LATAM patients as they usually are better funded and have more resources.
  • Every PAGs should join and support each other’s events and efforts.
  • Working committees by disease of interest should be created
  • A good practice library should be created by GAAPP with resources in Spanish

ACTION: Coordinate the creation of a library of resources in Spanish
ACTION: A WhatsApp group with 9 Ibero-American PAGs was created

NORTH AMERICA

Challenges

  • Insurance. What is covered? Biologics accessibility
  • Access to care: rural populations can access care, no access to specialists; long wait times
  • Health disparities
  • Affordability, care can be prohibitive

Solutions

  • HCPs:
    • Importance of early diagnosis
    • Care Pathway awareness (HCP)
    • Physician awareness and communication, and aligning with patient advocacy organizations
  • Patients:
    • Getting the materials in hands – adherence, what is optimal care
    • Barriers- language, cultural
    • Public policy
    • Make the information more unified

Collaborations

  • Policy and decision makers (insurance and government)
  • Industry partners
  • Advocates
  • Educating Allied Health – empowering (PAs, NPs, Respiratory Therapists
  • Social media around shared initiatives, amplify shared messages
  • Create shared resources (how to talk to your doctor)
  • Create a forum for discussion

Our closing session was presented by our keynote presenter Duncan Stevens, owner, and founder of the Influence Association. Duncan led our group in exercises that build skills to develop one’s influence skills to better advocate for their organization and mission. A copy of the presentation and the recording is available for download on our website.

Conclusions

At the conclusion of the keynote presentation, the group reconvened to discuss the next steps. The GAAPP Board of Directors and staff would review the data collected during the breakout sessions during strategic planning for 2023. The outcomes, and GAAPP’s strategic goals and priorities, will be shared with our members and partners in December 2022.

GAAPP wishes to thank our industry partners for their support of the GRS. We look forward to our continued work together to support our shared mission.

Photos of the event

Recording

If you couldn´t assist we invite you to watch the recording:

GAAPP Academy 2022

We also supported our members with 6 capacity-building webinars held online every Wednesday from May 1st to June 8th of 2022.  These sessions covered a variety of topics offered in both English and Spanish. You can watch the webinars again on our GAAPP Academy page together with the videos from the past 2 years. Webinar topics of 2022:

  1. Marketing in the Digital Era
  2. Grant Writing Tools
  3. Staff Development
  4. Financial Management
  5. Patient Access to Clinical Trials
  6. Patient-Centered Outcomes Research
Watch our webinars

With generous support from our sponsors

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Our previous Global Respiratory Summits