Jorveza® receives interim recommendation as maintenance therapy for EoE in Wales

Eosinophilic oesophagitis (EoE) is a chronic disease thus requiring long-term management. As a relatively new condition that was first described in the 1990s the initially the only treatment option was to remove multiple food groups from your diet until it was discovered  that the inflammation could be treated with oral topical steroid asthma medicines by telling patients to swallow the dose rather than inhale from a pump or to open the capsule and mix DIY to a paste with substances such as splenda or honey thus enabling the treatment to reach the oesophagus.  However this meant prescribing it off-label and patients having to disregard the enclosed printed instructions, resulting in further complications for healthcare providers, patients and carers.

Jorveza orodispersible budesonide tablet, which melts in the mouth before swallowing, was developed to deliver the oral topical steroid medication directly to the oesophagus. It was licensed in 2018 in the UK, and an application was made to NICE for NHS use as an acute 12-week course of treatment for adults with EoE. While the COVID pandemic later led to a pause in NICE approval reviews, research into Jorveza continued and long-term EoE treatment data was produced. However, starting a new NICE application with this additional evidence for NICE review would have further delayed patient access. Instead, the initial pre-COVID submission was approved by NICE in June 2021 and Jorveza was recommended for use by the NHS in England and Wales as a 12-week course.  

This initial recommendation was unclear on what should happen at the end of the 12-week course, leaving patients unsure how to manage their condition and healthcare professionals struggling to follow published guidelines. As time passed, our patient and healthcare professional network reported that accessing long-term EoE therapy options was a postcode lottery. EOS Network has continued to advocate on behalf of our community for standardised access for effective EoE treatments. 

A new interim recommendation, from the All Wales Medicines Strategy Group (AWMSG) and the Welsh government, updates previous guidance, making Jorveza the first approved long-term maintenance therapy for EoE in Wales.

What is Jorveza? 

Jorveza is an orodispersible tablet used to treat EoE. It contains a corticosteroid called budesonide that helps to reduce inflammation in the oesophagus.

Jorveza as a maintenance therapy for EoE 

While Jorveza has been shown to be effective at relieving patients’ symptoms and improving histology on biopsy, most report that their symptoms return after the 12-week acute course. Maintenance therapy, which involves prescribing a reduced dose long-term after the initial 12-week course, has been shown to continue managing the EoE inflammation.

The new interim recommendation from the AWMSG and the Welsh government means that NHS doctors in Wales can now prescribe Jorveza as a maintenance therapy to adults with EoE. This will make easier for patients to control their symptoms long-term.

This recommendation was issued based on the evidence of Jorveza’s long-term effectiveness. Research has found that when using it as a maintenance therapy: 

  • 78% of patients were extremely satisfied with their treatment 

  • 66% of patients showed no endoscopic signs of EoE after as many as 144 weeks of therapy 

  • 79% of patients were still in histological remission (no eosinophils in the oesophagus) after 144 weeks of therapy 

  • 84% of patients were still in clinical remission (EoE Symptom Activity Index (EEsAI) score of ≤20) after 144 weeks of therapy

What is an interim recommendation? 

To be prescribed by the NHS, medicines in the England and Wales need to be approved by NICE. However, this can take time. To help ensure patients can access new medications more quickly, interim recommendations can be issued to temporarily allow their use while awaiting full NICE approval. 

This new recommendation only applies to Wales, but if approved by NICE, maintenance doses of Jorveza could become available across all of England and Wales.

Regardless of its interim status or limited scope, the recommendation is welcomed by doctors and patients across Wales and marks an important step forward in EoE care.

Dr Hasan Haboubi celebrates the new recommendation

"We're delighted that the All Wales Medical Strategy Group (AWMSG) have reviewed the evidence base for orodispersible budesonide. This AWMSG review will standardise care and ensure all patients can continue long term on the same budesonide orodispersible tablet medication that induces a remission, thereby reducing the chances of relapse of disease."

The role of patient voices and EOS Network 

Clinical evidence of Jorveza’s effectiveness was not the only factor that contributed to this decision of the AWMSG and the Welsh government; patient experiences were also taken into account and as a patient support organisation, EOS Network helped make sure your voices were heard. 

We raised concerns with the review panel about inequities in access to orodispersible budesonide for maintenance treatment across the UK. 

We also emphasised that the requirement for re-induction(s) with orodispersible budesonide treatment, to manage relapses following its withdrawal after an acute treatment course, adds to service workload and costs, as patients require appointments with GPs and secondary care specialists to manage their symptoms and achieve remission. 

Finally, we highlighted the impact that poorly managed EoE has had on members of our community.

“EoE can be isolating for patients, as many will withdraw from social activities to maintain their dietary restrictions.”

We shone a light on the financial, emotional, social, and physical impacts of living with untreated EoE as an unnecessary burden on patients and our healthcare system. This helped AWMSG understand the need for approved maintenance therapies like Jorveza.

Share your experience - your voice matters

Jorveza still needs to secure NICE approval for use as an NHS maintenance therapy in the future, and your experience could help us present a more compelling case for patients throughout England and Wales. 

We’ve created a survey to help decision-makers understand what access to EoE treatment looks like around the world. Whether you’ve had a positive or negative experience, your story can help change the future and make treatments like Jorveza available to everyone who needs them.

Take part today

Summary 

Doctors in Wales can now prescribe Jorveza as a maintenance therapy for EoE in adults, but: 

  • This interim recommendation is still waiting for NICE approval, and only applies to Wales.
  • Patient voices and experiences will help strengthen the case we present to NICE to advocate for its approval.
  • You can help drive change by sharing your experience of accessing treatment for EoE in our survey.

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Author: Ruby Lamb

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