A hugely significant publication in Advances in Therapy has outlined the key rights and expectations for patients with eosinophil-associated diseases (EADs). The Charter devises an action plan to improve health and care outcomes for patients with EADs.

EADs include eosinophilic gastrointestinal diseases such as EoE, EoG, EoN and EoC, but also cover more common illnesses such as eosinophilic asthma and chronic rhinosinusitis, and rarer diseases like hypereosinophilic syndromes (HES). Our Chair and Founder, Amanda Cordell, is a named author on the paper representing our communities voice and needs. Amanda commented 

This is a global step toward a wider recognition of the word Eosinophilic (EE-O-SINO-FIL-IK) and of the needs of those affected. This essential collaborative patient advocacy supports our mission to ensure that every person with an Eosinophilic Gastrointestinal Disease receives a prompt, accurate diagnosis, the right treatment for them, and support to live with their condition.  

The Charter seeks to replicate the success of a similar publication in 2018 which has lead to meaningful improvements in care for patients with severe asthma, uniting healthcare providers, systems, policymakers. The EAD Patient Charter states the following four foundational rights and expectations for care:

Summary

1. People with EADs, Their Caretakers, HCPs, and the Public Must Have Greater Awareness and Education about EADs

With levels of awareness varying greatly within communities of patients, their carers and healthcare providers, finding specialists and consistency are major challenges for people with EADs. Targeted and tailored campaigns educational programmes are necessary for HCPs in primary and secondary care and across a range of disciplines and specialties.

There must also be better guidance for patients to manage their conditions. Patient Advocacy Groups must support this empowerment and double HCPs' efforts in making educational resources available for patients so that they can play an active role in treatment decision-making.

2. People with EADs Must Receive a Timely, Accurate Diagnosis

A prompt, accurate diagnosis is the foundation of effective care. Clear referral guidelines and criteria are needed and recognised experts must be accessible, particularly in EADs such as the lower-gut EGIDs where diagnostic criteria are not well defined.

3. All People with EADs Must Have Access to an Appropriate Multidisciplinary Team, When Necessary

Many EADs require a multidisciplinary team. Technologies, regional expertise and reformed models of care should be implemented to minimise barriers such as socio-economic status, language, education, availability, geography and insurance. Teams should also include an EAD coordinator who can bring together relevant specialisms to personalise care and avoid siloed treatment.

4. People with EADs Must Have Access to Safe and Effective Treatment Options Without Unnecessary Regulatory Delays

Poor understanding can lead to sub-optimal treatment and excessive oral corticosteroids (OCS) use, especially in comorbid EAD cases. Robust global treatment guidelines are necessary to ensure patients are offered the right treatment at the right time.

Read the full Charter here.