How can we, as patients, support or raise our voices to bring more focus to ABPA in the medical and research world?

I deeply appreciate the work being done by the National Aspergillosis Centre, especially in raising awareness and supporting patients like me.

But I wanted to ask respectfully: Is more active research or clinical development happening specifically for ABPA therapies?

How can we, as patients, support or raise our voices to bring more focus to ABPA in the medical and research world?

You’re absolutely right that ABPA (Allergic Bronchopulmonary Aspergillosis) often sits in the shadow of more widely recognised diseases like asthma, cystic fibrosis, and even chronic pulmonary aspergillosis (CPA), despite the daily impact it has on breathing, energy, and quality of life for those affected. Here’s a comprehensive response to your two key questions:

👉 Is more active research or clinical development happening specifically for ABPA therapies?

✅ Some research is happening — but it’s limited and fragmented.

• ABPA is considered a rare disease (likely fewer than 10,000 diagnosed in the UK), so it doesn’t attract the same commercial research attention as asthma, cystic fibrosis (CF) or chronic obstructive pulmonary disease (COPD)..

• ABPA overlaps with asthma, cystic fibrosis, and bronchiectasis, which means treatments often come from those areas — but are not tailored to ABPA patients.

💊 Existing therapies are adapted, not designed for ABPA:

• Steroids (oral or inhaled) remain first-line, but long-term use has harmful side effects.

• Azole antifungals (like itraconazole or voriconazole) are used to reduce fungal burden — but responses vary, side effects are common, and resistance is rising.

• Biologics (like omalizumab, mepolizumab, dupilumab, and now tezepelumab) are showing promise in small studies and real-world experience — but none are licensed specifically for ABPA, which means access is inconsistent and often requires individual funding requests (IFRs).

🔬 Ongoing research and development (as of 2025):

• Japan and India are leading some ABPA-specific studies, especially around imaging, IgE trends, and steroid-sparing strategies.

• Small studies and case series are evaluating biologic therapies in ABPA, particularly in:

  • Asthma + ABPA overlap

  • CF + ABPA overlap

  • Bronchiectasis + ABPA cases with poor control

• No current large-scale Phase 3 trials for ABPA-specific therapies are active in the UK or Europe, though there is growing academic interest at centres like Manchester (NAC) and Royal Brompton and specialist centres across Europe.

👉 How can we, as patients, raise our voices to bring more focus to ABPA?

🗣️ 1. Share your story

• Personal experiences — like the one you just shared — are powerful advocacy tools. NAC and Aspergillosis Trust are regularly asked to provide volunteers to talk about their experiences for national media stories – when they happen there is usually little time to respond so leaving your contact details with Aspergillosis Trust or NAC can be a way to help raise awareness.

• Blogs, social media, patient interviews, or videos can humanize the condition for researchers, clinicians, and policymakers.

• You could contribute to aspergillosis.org, BLF, or Rare Disease UK platforms.

💬 2. Engage with research centres

• The National Aspergillosis Centre (NAC) is uniquely placed to drive research.

• Ask to be part of patient advisory panels, surveys, or focus groups — your lived experience helps shape research priorities. There is currently a Europe-wide group run by the European Lung Foundation (Aspergillosos PAG) that is designed to do exactly this, and here at NAC we periodically ask for volunteers to help run clinical trials in the UK, usually via our Facebook or Telegram groups.. The Aspergillosis Trust are also occasionally asked to suggest volunteers for trials, so it is well worth engaging with them too. There is no obligation, just join to see what is going on! Every extra person in advocacy groups gives the group more awareness power.

• Inquire whether NAC is seeking trial participants, or if they plan to study ABPA-specific uses of biologics.

✍️ 3. Support and pressure through policy

• Add your voice to calls for biologic licensing for ABPA.

• Back campaigns like Accelerating Access to Rare Disease Therapies (via Genetic Alliance or Rare Disease UK).

• Contact your local MP or ICB (Integrated Care Board) to raise access issues — such as Individual Funding Request (IFR) delays or biologic refusals.

🤝 4. Connect with others

• ABPA-specific support groups (e.g. through NAC, Facebook groups, or Zoom meetups) allow patients to:

  • Share coping strategies

  • Create collective pressure

  • Support research studies via recruitment or funding

📈 5. Help build data

• ABPA is under-diagnosed and under-coded in NHS data — meaning we don’t know how many people truly have it.

• Participating in registries, audits, or quality-of-life research helps build a case for investment and clinical guidelines.

✨ Final Thoughts

You are right to point out that the scale of suffering from ABPA is real — even if it doesn’t generate headlines. That makes patient voices even more essential. The good news is: the more we talk about ABPA, the more momentum we can build. Already, biologics are gaining attention — but formal ABPA trials, compassionate-use programs, and NHS funding clarity are still needed.

Let me know if you’d like help writing a patient statement, connecting with a researcher, or forming a focus group to bring these issues forward. You could help shape the next chapter of ABPA care.

You’re doing more than you realise by speaking out. 👏