Damp, Cold, and Poor Housing – Why It Matters for Lung Health

This briefing from the House of Commons Library (2025) looks at how poor housing conditions—especially damp, mould, and cold homes—affect health and what’s being done about it in the UK.

Main Points

  • Health risks are serious
    Living in damp or mouldy homes increases the risk of respiratory problems, particularly for people with existing lung disease like aspergillosis, asthma, COPD, or bronchiectasis.

  • Children and vulnerable adults
    Young children, older adults, and people with weakened immune systems are most affected. Damp and mould can trigger flare-ups, worsen breathing symptoms, and increase infection risk.

  • Mental health impact
    Poor housing is linked to stress, anxiety, and depression. Worrying about your home can also worsen physical symptoms, especially if you avoid using rooms with mould or limit heating to save costs.

  • Cold homes add to the problem
    Cold airways can make breathing more difficult, weaken the immune system, and increase the chance of winter infections.

  • Wider health effects
    Damp and cold can also affect heart health, bone/joint pain, and overall wellbeing.

What’s Being Done

  • Legal responsibilities: Landlords must keep homes safe and fit to live in under UK law. This includes dealing with serious damp and mould.

  • Government programmes:

    • Funding for improving insulation and heating in social housing.

    • Advice services for tenants.

    • Local councils can take action if landlords fail to address hazards.

  • Public health guidance now recognises the link between housing and chronic illness, with stronger advice for early intervention.

What This Means for Aspergillosis Patients

  • Stay alert to symptoms: If your cough, breathlessness, or fatigue worsen at home, check for damp, mould, or poor heating.

  • Act early: Report problems to your landlord or council quickly—prolonged exposure can worsen lung damage.

  • Medical link is recognised: You are more likely to be taken seriously now, as official guidance acknowledges the health risks.

  • Keep records: Photos, symptom diaries, and GP notes can support housing complaints.

For full details see https://commonslibrary.parliament.uk/research-briefings/cdp-2025-0096/


Spoon Theory: Making Sense of Energy Limits in Aspergillosis

The Spoon Theory is a way of explaining what it’s like to live with a long-term illness that affects your energy and stamina. It was first described by Christine Miserandino, who used spoons as a visual metaphor for the limited amount of energy she had each day.

How it works

  • Imagine you start each day with a set number of spoons — maybe 10 or 12.

  • Every task you do “costs” spoons:

    • Getting dressed might cost 1 spoon

    • Cooking a meal might cost 2 spoons

    • A shower could cost 2 spoons on a bad day

    • Going for a walk or attending an appointment might cost 3 or 4 spoons

  • When you run out of spoons, that’s it — you don’t have the energy to keep going. If you push yourself, you “borrow” from tomorrow’s spoons, which can leave you feeling worse for days.

Why CPA and ABPA drain your spoons

Both conditions can cause:

  • Breathlessness – even small tasks can feel like hard work.

  • Coughing and mucus production – which can be exhausting physically.

  • Flare-ups – like haemoptysis (coughing blood) in CPA or allergic inflammation in ABPA.

  • Medication side effects – antifungals, steroids, or biologics can also sap your energy.

  • Frequent appointments – travel and hospital visits can eat into your spoon supply.

Why Spoon Theory matters

Understanding Spoon Theory helps you:

  • Plan your day – save enough spoons for the important things.

  • Pace yourself – spread out demanding tasks, rest between them.

  • Explain your limits – it’s an easy way to help friends, family, and employers understand that you’re not being lazy — you’re managing your limited energy.

  • Avoid “boom and bust” – pushing too hard on a good day can leave you with no spoons for the next few days.

Practical tips

  • Prioritise – decide what’s essential today and what can wait.

  • Ask for help – let others “spend” their spoons for you when possible.

  • Rest without guilt – recharging is part of living with a long-term condition.

  • Track your spoons – keeping a symptom diary can help you notice patterns.

Remember: Your number of spoons can change day-to-day, especially if you’ve had a flare-up, infection, or a hospital stay. Learning to work with your spoons instead of against them can help you stay in control and reduce stress.


Being Heard in Healthcare: Confidence, Communication, Gender Bias, and Your Rights

Living with aspergillosis or severe asthma often means frequent contact with healthcare professionals — GPs, hospital specialists, nurses, physiotherapists, pharmacists, and more. Most of these encounters are positive, but sometimes patients leave feeling they weren’t truly listened to. This can be frustrating, especially when symptoms are complex, variable, or invisible to others.

Why Some Patients Feel Unheard

Some patients report that their background, gender, education, or knowledge of their condition seems to affect how clinicians speak to them. If a clinician thinks you are “well informed,” they may change their approach — sometimes giving you more detail, but occasionally becoming defensive or dismissive.
This shouldn’t happen. Every patient deserves the same respect, attention, and clear explanations, regardless of their background or experience.

Occasionally, what feels like healthcare ego may actually come from other sources:

  • Time pressure in busy clinics

  • Stress or fatigue

  • Overconfidence in diagnostic skills

  • Unconscious bias about gender, age, or condition severity

The Role of Gender Bias

Research in the UK and internationally shows that gender can sometimes influence how symptoms are interpreted and how seriously they are taken. Women are, on average, more likely to have their symptoms attributed to stress or anxiety, while men may be assumed to under-report pain or discomfort.
In conditions like asthma and aspergillosis — where breathlessness, fatigue, and chest symptoms may not always show clearly on tests — this bias can delay diagnosis, affect treatment urgency, and shape how much explanation is given. Recognising that this bias exists can help you prepare to advocate for yourself more effectively, regardless of gender.

The Women’s Health Strategy for England — A Step Forward

The Women’s Health Strategy for England (gov.uk link) is a landmark initiative aiming to transform how healthcare listens to and serves women. It highlights priorities that matter for anyone with a long-term, complex condition:

  1. Women’s Voices Must Be Heard – 84% of women surveyed said they often felt ignored or dismissed by healthcare professionals.

  2. More Inclusive Policies and Training – Increased focus on women’s health education for healthcare staff and embedding shared decision-making into routine care.

  3. Closing the Research Gap – Improving female representation in clinical research and analysing data by sex and life stage.

  4. System-Level Change – Appointing a Women’s Health Ambassador, setting up women’s health hubs, and introducing women’s health leads for accountability.

For the aspergillosis community, this means a greater push for inclusive research, equal access to treatment, and recognition of symptoms that might otherwise be overlooked.

What to Do if You Feel You Weren’t Heard

If you leave an appointment feeling your concerns weren’t addressed:

  • Restate your main concern politely but firmly, explaining why it matters.

  • Ask the clinician to repeat back what they understood, so you can correct any misunderstandings.

  • Request that your concerns be recorded in your medical notes.

  • Follow up in writing via a patient portal, email, or letter.

  • Bring a trusted supporter (trusted friend, family member, or advocate) to future appointments to help make your case.

Building Confidence in Healthcare Conversations

Confidence in speaking up grows with preparation:

  • Prepare your top two or three key points before the appointment.

  • Practise saying them aloud so they feel natural.

  • Use clear phrases like “I am concerned about…” or “I need to understand…”

  • Remember — you have a right to clear information about your diagnosis, treatment, and risks.

  • If you can’t speak up in the moment, follow up in writing afterwards.

Why This Works — The Evidence

Research shows prepared, assertive patients get clearer, more thorough answers:

  • The Ask Me 3 approach improves understanding and engagement.

  • Shared decision-making studies show prepared patients are more likely to have concerns addressed and remember what was discussed.

  • BMJ and Patient Education & Counseling studies find that specific, assertive language leads to better explanations and consideration of alternatives.

  • Having an advocate present improves follow-up and adherence to care plans.

Final Thought

In aspergillosis care, where symptoms can be complex and treatments long-term, good communication is as important as good medicine. Speaking up respectfully but confidently helps you get the care you need and supports a culture where every patient — regardless of gender or background — is listened to from the first moment. The Women’s Health Strategy shows there is now national recognition of these issues, and your voice is a vital part of making change happen.


📘 What is CPA? (Chronic Pulmonary Aspergillosis)

Patient handout for A&E staff who are not aware of aspergillosis.


What is CPA?

CPA is a chronic fungal infection of the lungs caused by Aspergillus, most often in people who already have damaged lungs from conditions like tuberculosis, COPD, lung cancer, or sarcoidosis.

Unlike ABPA, CPA is a true infection, not an allergic reaction. It is not contagious but can slowly destroy lung tissue if not treated.


Symptoms

  • Chronic cough, often with mucus

  • Coughing up blood (haemoptysis)

  • Fatigue, low-grade fever

  • Unexplained weight loss

  • Breathlessness

  • Recurrent chest infections not responding to antibiotics


Diagnosis

  • CT scan of the chest showing cavities, nodules, or fungus balls (aspergillomas)

  • Aspergillus IgG antibody (usually raised)

  • Positive sputum PCR or culture for Aspergillus

  • Exclude TB and malignancy


Treatment

  • Long-term antifungal therapy (e.g. itraconazole, voriconazole, posaconazole)

  • Monitor blood levels and liver function

  • Surgery or embolisation if severe bleeding occurs

  • Supportive care: oxygen, nutrition, physiotherapy


Key Points for A&E:

✅ CPA is a progressive fungal infection, not a typical bacterial pneumonia
✅ May present with haemoptysis, respiratory distress, or systemic illness
✅ Review current antifungal treatment and potential drug interactions
✅ Consider urgent chest CT and specialist referral if patient is unwell


📍 For specialist support:

National Aspergillosis Centre (NAC)
🏥 Wythenshawe Hospital, Manchester University NHS Foundation Trust
🌐 NAC homepage on MFT website  https://mft.nhs.uk/wythenshawe/services/infectious-diseases/national-aspergillosis-centre/
🌐 www.aspergillosis.org

📞 Daytime contact: 0161 291 2891 or 0161 291 4362
📞 Urgent out-of-hours: Call Wythenshawe switchboard on 0161 998 7070
📢 Ask for the on-call Infectious Diseases Consultant


Debate: Gender Bias in Science and Clinical Trials & Why It Matters to Patients

Introduction: A History of Exclusion For decades, medical research and clinical trials were built around a default male body. Women were routinely excluded from studies out of concern for hormonal variation, pregnancy risks, or assumptions that female responses would mirror male ones. The consequences? Misdiagnoses, incorrect dosing, side effects overlooked in women, and entire conditions dismissed as psychological.

This pattern of systemic gender bias has had real-life consequences for millions of women, especially those living with chronic or misunderstood illnesses like ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), long COVID, autoimmune diseases — and potentially, aspergillosis.


Section 1: Real Consequences of Exclusion

Why Gender Bias Matters in Asthma and Aspergillosis
Both asthma and aspergillosis are diseases where gender can influence immune response, disease progression, and side effects of treatment. Women are more likely to develop certain asthma subtypes (e.g., late-onset eosinophilic asthma), which overlap with allergic fungal conditions like ABPA. They may also experience more frequent exacerbations and are more vulnerable to long-term steroid side effects such as adrenal insufficiency and bone loss. Despite this, sex-specific analysis is rare in fungal disease trials, and asthma research has only recently begun to explore these differences.

Is Gender Relevant in Aspergillosis? While aspergillosis affects people of all sexes, some patterns suggest potential sex differences in prevalence, diagnosis, immune response, and treatment side effects:

  • Chronic Pulmonary Aspergillosis (CPA) appears more common in men, especially in post-TB or COPD populations, but women may experience more severe fatigue or be underdiagnosed.
  • In ABPA (Allergic Bronchopulmonary Aspergillosis), hormonal differences may influence disease severity, and women often report more exacerbations or sensitivity to long-term steroid treatment.
  • Invasive aspergillosis is less well studied for sex differences, though some research in animal models suggests hormonal influences on fungal immunity.
  • Women may also be more vulnerable to side effects of antifungals and corticosteroids, such as adrenal suppression, hearing loss, or osteoporosis.

Despite these observations, most clinical studies do not stratify by sex or explore gender-specific differences, leaving important questions unanswered.

A Message to Women Living with Aspergillosis
If you're reading this as a woman affected by aspergillosis, please don’t feel discouraged. While we highlight gaps in past research, the goal is to push for better inclusion, not to suggest you're being overlooked in care. You are not alone. Clinicians are becoming more aware of these issues, and researchers — especially in the UK — are actively working to close the gender gap. Patient groups and specialist centres like the NAC are also strong advocates for fair, personalised treatment. Your voice matters, and being informed is a powerful step in making future care better for everyone.

Clinical trials that exclude or underrepresent women have led to:

  • Drugs that stay longer in women's bodies (e.g., Zolpidem) causing next-day drowsiness and driving risk
  • Heart medications being under-prescribed to women, because early trials only studied men
  • Misunderstanding of how autoimmune diseases develop and respond to treatment
  • Failure to understand symptoms unique to women, such as how heart attacks present differently

Historically, women were also more likely to have their physical symptoms dismissed as anxiety or "hysteria." ME/CFS, a condition affecting mostly women, was dismissed for decades as psychological. When patients with ME later caught COVID-19, many were again left behind as new post-viral syndromes took priority.

For patients with aspergillosis, particularly chronic forms like CPA or ABPA, the relevance is clear. These conditions are under-researched and under-recognised, and early studies may not fully reflect how they impact women. Steroid-related side effects like osteoporosis, adrenal suppression, and hearing loss may differ by sex — yet sex-stratified data is rarely available.


Section 2: Has Anything Changed?

Yes. In the UK, the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) have taken steps to improve inclusion:

  • NIHR-funded studies are expected to include representative populations and report on diversity
  • UK Research and Innovation (UKRI) promotes equality in trial design, including sex and gender analysis
  • The DecodeME study (the world’s largest ME/CFS genetics study, based in the UK) is actively engaging with female participants

But gaps remain — especially in rare diseases, chronic illnesses, and reproductive health. For fungal disease and aspergillosis specifically, many trials still do not analyse sex-specific outcomes, despite women forming a significant proportion of the affected population.


Section 3: Are Women Now Being Protected Too Much? Some worry that extra precautions — like excluding women from early-phase trials — may backfire:

  • Delaying access to life-changing drugs
  • Forcing women to wait until post-marketing surveillance to be included
  • Excluding pregnant and breastfeeding women entirely, even when they are at high risk (e.g., in pandemics)

This creates a paradox: either women are harmed by being ignored, or excluded "for their safety."

The solution is not to avoid studying women — but to design smarter, safer, inclusive trials from the beginning.


Section 4: Will We Need Two Trials — One for Men, One for Women? This concern is understandable. Stratifying data by sex, running subgroup analyses, and including both pre- and post-menopausal women does cost more.

But it's not about running two separate trials. It's about:

  • Recruiting balanced numbers of men and women
  • Analysing sex-specific outcomes from one trial
  • Designing adaptive trials or pooled data studies

Neglecting sex differences costs more in the long run — through failed drugs, recalls, and harm to patients.


Section 5: Positive Examples of Progress

  • UK heart disease research now includes female-specific risk factors and symptom profiles in NICE guidance
  • Autoimmune research increasingly uses female animal models and stratifies analysis by sex
  • Endometriosis, menopause, and menstrual health are finally getting targeted research funding in the UK
  • DecodeME is helping uncover the genetic basis of ME/CFS with full inclusion of women
  • Long COVID clinics in the NHS are building on lessons from women-led ME/CFS research
  • New studies on asthma and fungal allergy (e.g., ABPA) are beginning to explore hormonal and immunological factors that may differ by sex

Section 6: Where Patients Fit In Patients have led many of these changes:

  • Women with ME, long COVID, POTS, or fibromyalgia have insisted their experiences are real
  • Advocacy groups in the UK (e.g. Action for M.E., LongCovidSOS, National Aspergillosis Centre support groups) have pushed for sex-specific research
  • Patient-led data collection and patient involvement in trial design are now expected in NIHR-funded studies
  • In rare fungal diseases like CPA, SAFS, and ABPA, patients can support research by contributing to trials that welcome women and report on sex-specific outcomes

Conclusion: A Call to Patients This isn’t just a scientific issue — it’s a patient rights issue. Without full inclusion of women in research, we can't expect safe, effective, and equitable treatments.

Ask questions. Share your stories. Advocate for better science. And when possible, participate in trials that commit to transparency and inclusivity.

For patients with aspergillosis, the message is clear: We need sex-aware, inclusive research to understand this complex disease in all its forms — and that means including and reporting on women properly.

Medicine must work for everyone — not just the default male.

 


💭 Why Some People with Aspergillosis Delay Going to A&E

And Why That Could Be Dangerous

If you live with chronic aspergillosis — whether CPA, ABPA, SAFS, or aspergillus bronchitis — you’ve probably had moments where your symptoms suddenly worsened and you didn’t know what to do. Maybe you’ve thought about going to A&E, or even dialling 999, but something stopped you.

You're not alone. Many people in our community feel reluctant to seek emergency care, even when they’re very unwell.

Here’s why — and why it matters.


🏥 “I’ve Been to A&E Before — and It Wasn’t a Good Experience”

Many patients have told us:

  • “I waited for hours just to be told it’s probably my usual symptoms.”

  • “The staff didn’t seem to know what aspergillosis is.”

  • “They didn’t know how to manage my antifungal treatment or asthma.”

  • “I felt dismissed — like I was being dramatic.”

Experiences like this can leave people feeling humiliated or unsafe, and understandably less likely to go back — even when things are serious.


🛏️ “I Don’t Want to Be Admitted — I’ll Be Stuck There”

A&E can be a gateway to hospital admission, and for someone managing a complex, fluctuating condition at home, this can feel like losing control. You may worry about:

  • Being put on the wrong ward

  • Catching infections

  • Not being given the right antifungal, steroid, or oxygen support

  • Losing time, independence, or confidence

So instead, you might choose to stay home — sometimes too long.


⌛ “I Don’t Want to Waste Anyone’s Time”

We hear this all the time:

“A&E is for people who are really ill — not for someone like me.”
“The NHS is already overwhelmed.”
“I’ll just give it a bit more time.”

But remember: you’re not wasting time by going to A&E if your health is deteriorating. Chronic illness doesn’t make your emergency less urgent — it just makes it harder to spot.


😔 “I’m Tired of Needing Help”

Living with chronic aspergillosis is exhausting. It’s easy to feel like:

  • “I should be able to manage this myself.”

  • “I don’t want to be a burden.”

  • “It’s probably just another bad flare.”

But when symptoms cross a line — from “bad day” to “dangerous” — it’s vital to act. Seeking urgent care isn’t failure. It’s strength.


🌫️ “I Didn’t Know It Was That Serious”

The truth is: even very experienced patients often aren’t sure when symptoms need emergency treatment. You might think:

  • “I’ve had breathlessness before — I’ll just rest.”

  • “The coughing is worse, but it’s happened before.”

  • “I’ll wait until the morning and see.”

But if you’re coughing blood, can’t speak a sentence, can’t stand up, or feel confused or faint, waiting is dangerous.


💬 “I Asked in a Group First”

Support groups are amazing — and a lifeline for many. But no group can diagnose an emergency. If you're:

  • Asking whether to go to A&E

  • Describing symptoms that sound like respiratory failure, sepsis, or adrenal crisis

  • Hoping someone tells you not to worry...

Then it’s already time to act, not wait for replies.


✅ Final Message

If you have severe symptoms, sudden changes, or feel frightened about your health:

Don’t wait. Don’t post. Don’t hope it passes.
Call 999 or go to A&E.

You are not a burden. You are not overreacting.
You are saving your own life.

When to go to A&E or call 999


🚨 When to Go to A&E or Call 999

A Guide for People with Chronic Aspergillosis, Asthma, and Other Long-Term Conditions

When you live with a long-term health condition like chronic aspergillosis (CPA), allergic bronchopulmonary aspergillosis (ABPA), severe asthma, or immunosuppression, it can be hard to know when a flare-up is “just part of the illness” — and when it’s something more serious that needs emergency medical care.

This guide is designed to help you — or someone you care for — recognise the signs that mean it’s time to stop waiting, stop asking for online advice, and get help immediately.


🧠 A Special Note for People with Aspergillosis

People living with chronic aspergillosis often get used to symptoms like breathlessness, coughing, fatigue, or chest tightness. That makes it easy to miss or downplay serious changes — especially if you're reluctant to make another trip to A&E.

But there are times when acting fast is critical.

If you have CPA, ABPA, SAFS, or aspergillus bronchitis, you should go to A&E or call 999 immediately if you experience:

  • 🫁 Sudden or worsening breathlessness, especially if it’s different from your usual

  • 💨 Breathing that doesn’t improve after using inhalers, nebulisers, or oxygen

  • 💔 New chest pain or tightness — particularly if it spreads or worsens when breathing

  • 🌡️ A high fever, shaking chills, or flu-like symptoms

  • 🩸 Coughing up blood — especially if it's fresh or in large amounts

  • 🧠 Feeling confused, drowsy, or faint

  • Severe weakness, fatigue, or inability to stand or walk

  • 💊 Severe reaction to medications (e.g. antifungals, steroids, or biologics) — rash, swelling, dizziness, jaundice


⚠️ Don’t Wait or Ask Online — Act Fast When These Signs Appear

We completely understand why some people — particularly those with severe asthma, CPA, or ABPA — may be hesitant to go to A&E. You may have faced:

  • Long waits

  • Feeling dismissed or misunderstood

  • Fear of hospital admission

  • Exhaustion from too many medical appointments

These are real concerns, but when you're struggling to breathe, disoriented, or deteriorating rapidly, it’s not the time to post in a support group or wait for reassurance. It’s time to act.

In life-threatening moments, what you need isn’t advice — it’s treatment.

No support group — no matter how compassionate — can replace oxygen, IV antibiotics, a steroid boost, or emergency care.

Please don’t delay. You are never wasting anyone’s time by seeking help when something feels wrong.


🔥 Emergency Symptoms That Always Need 999 or A&E

Whether you have a long-term condition or not, there are symptoms that require immediate action:


🫁 Breathing Problems

  • Severe breathlessness, even at rest

  • Struggling to speak or complete sentences

  • Gasping, wheezing, choking

  • Blue or grey lips, face, or fingertips

  • No response to inhalers or nebulisers

  • Sudden onset shortness of breath


❤️ Chest Pain or Heart Symptoms

  • Crushing or heavy chest pain

  • Pain radiating to jaw, neck, arms, or back

  • Palpitations + fainting, dizziness, or breathlessness

  • Fast or irregular heartbeat

  • Suspected heart attack or angina


🧠 Neurological Emergencies

  • Sudden weakness or numbness (especially on one side)

  • Slurred speech, facial droop, or confusion

  • Seizures or fits (especially if new or lasting >5 minutes)

  • Sudden, severe headache

  • Loss of consciousness or collapse


🌡️ Infection / Sepsis Signs

  • High fever with chills or rigors

  • Very fast breathing or heartbeat

  • Cold, mottled, clammy skin

  • Feeling very drowsy, confused, or unable to stay awake

  • Not passing urine or drinking

  • Feeling like something is seriously wrong


🩸 Bleeding or Trauma

  • Heavy bleeding that doesn’t stop

  • Major burns or deep wounds

  • Suspected broken bones

  • Head, neck, or spinal injury

  • Bleeding from eyes, genitals, or rectum


💊 Medication-Related Emergencies

  • Anaphylaxis: swelling, rash, shortness of breath, collapse

  • Adrenal crisis (especially in those on long-term steroids): vomiting, confusion, weakness, fainting

  • Severe side effects to antifungals or biologics: dizziness, liver pain, rash, yellowing skin

  • Sudden change in behaviour or mental state after a new medication


🧭 Not Sure? Here's What to Do

  • If you’re in doubt, but worried: Call NHS 111

  • If symptoms are severe, worsening, or causing distress: Call 999 or go to A&E

  • If you’re alone, unwell, and unsure — you are safer being checked


📘 Summary: When to Get Help Immediately

Symptom Area Emergency Signs
Aspergillosis-specific Sudden breathlessness, new chest pain, coughing blood, fever, severe weakness, confusion
Breathing Gasping, cyanosis, wheezing unrelieved by inhalers
Heart Chest pain, palpitations with collapse, irregular pulse
Neurological Stroke signs, seizures, new confusion, severe headache
Infection/Sepsis High fever + confusion or fast breathing, cold mottled skin
Trauma/Bleeding Uncontrolled bleeding, deep wounds, broken bones, burns
Medication-related Anaphylaxis, adrenal crisis, severe side effects, sudden mental health change

💬 Final Word

If you're experiencing any of these symptoms, this is not the time to post in a support group or wait to see how things go.

Please don’t delay — even if you’ve had difficult A&E experiences in the past. The risk of waiting is far greater than the discomfort of being seen.

You are never wasting anyone’s time by protecting your health or saving your life.


🧾 Rezafungin: A New Antifungal Being Trialled for CPA

Some people with chronic pulmonary aspergillosis (CPA) have trouble tolerating standard antifungal medications. Commonly used drugs like voriconazole and posaconazole can cause serious side effects such as hallucinations, liver enzyme disturbances, or gut problems. When these medications can’t be used, options become limited.

A new antifungal, rezafungin, is now being studied as a possible treatment for CPA — especially in people who can't tolerate azoles. It is not yet approved for aspergillosis, but a major clinical trial is under way.


🧬 What Is Rezafungin?

Rezafungin is part of a newer group of antifungal drugs called echinocandins. These work by weakening the fungal cell wall — a very different mechanism to azole drugs like itraconazole or voriconazole.

Key features:

  • Given as a weekly intravenous (IV) drip

  • Long-acting: stays in the body for days after each dose

  • Designed to provide high drug levels in the lungs and bloodstream

  • Early studies show less frequent side effects than with some older antifungals

It is already licensed for treatment of Candida bloodstream infections but is being studied now for CPA.


🧪 Current Research: Trial for CPA

A clinical trial is currently recruiting people with CPA who:

  • Cannot take azole antifungals because of side effects or resistance

  • Need alternative or combination therapy

This trial (called REZAFUNGin Efficacy and Safety for Aspergillus – CPA) is being conducted in the UK and internationally. The goal is to test whether rezafungin is safe and effective in CPA patients who have few remaining options.

🔗 View the clinical trial (NCT06794554)


📊 What Have Previous Studies Found?

While studies in CPA are just beginning, previous trials in other fungal infections provide important clues:

✅ Phase 2 & 3 Studies (Candida Infections)

  • Rezafungin was found to be as effective as daily echinocandins (like caspofungin)

  • Once-weekly dosing worked just as well as daily treatment

  • Side effects were mild, and liver toxicity was rare

  • No CNS side effects (like hallucinations) were reported

🧫 Laboratory Evidence

  • Rezafungin is active against Aspergillus fumigatus, including some azole-resistant strains

  • It reaches good levels in lung tissue — an important feature for CPA

  • May be used alone or with another antifungal in complex cases

🩺 Case Example

A recent case report described successful treatment of chronic pulmonary aspergillosis using rezafungin plus voriconazole in a patient with resistant infection (Oxford University Press, 2024).


⚠️ Is Rezafungin Available Now?

Not yet. Rezafungin is only available for CPA:

  • Through a clinical trial, or

  • By special approval for compassionate use in selected cases

It is not currently licensed for aspergillosis in the UK or elsewhere.


💬 What Should I Discuss with My Doctor?

If you're considering participation in a clinical trial or if standard treatments have failed, you might ask:

  • Am I eligible for the rezafungin CPA trial?

  • What are the benefits and risks of trying this treatment?

  • Will I still need other antifungals (e.g. azoles or amphotericin)?

  • How often will I need blood tests and hospital visits?

  • Will this help if I have azole resistance or liver side effects?


📌 Summary

Rezafungin is a new antifungal drug being tested for people with chronic pulmonary aspergillosis who cannot take older treatments. It offers once-weekly dosing and early signs suggest a favourable safety profile, including in patients with liver concerns or those who had side effects from azoles.

Although not yet widely available, it may offer hope for people with limited options. If you or someone you know is struggling with antifungal intolerance, you may wish to speak to your medical team about the CPA clinical trial or explore compassionate access routes.

👉 Learn more or check trial sites:
🔗 https://clinicaltrials.gov/study/NCT06794554


Cyber Safety for Aspergillosis Patients: Supplement to UK NCSC Advice

This guide builds on the official UK Government cybersecurity advice for families and individuals (www.ncsc.gov.uk/section/advice-guidance/you-your-family) and adds patient-specific tips for people with aspergillosis.


Feeling overwhelmed?

You're not alone. The internet and phone landscape can feel like a minefield, especially when you're trying to manage your health too. No one expects you to become an expert in cybersecurity overnight. The aim of this guide isn’t to scare you — it’s to help you take small, realistic steps to protect yourself.

Just like with your health, doing the basics well goes a long way. You don’t need to memorise everything — focus on:

  • Using strong passwords (or a password manager)
  • Being cautious with texts, links, and phone calls
  • Asking for help when something doesn’t feel right
  • Always accept updates on your phone, browser, or computer when offered — these often fix known security problems and help keep you protected.

It's okay to stop and ask: “Does this sound right?” If in doubt, check with someone you trust.


Top Scam Red Flags

Watch out for these common signs that something could be a scam:

  • You’re told to act urgently or keep it secret
  • You’re offered money, discounts, prizes or help out of the blue
  • You’re asked to click a link or open an attachment in a message
  • A caller claims to be from the bank, NHS, government, or police, but something feels off
  • You’re told the second part of a message will come from a different number or address
  • You’re asked to confirm personal, financial or password information
  • You’re asked to download software or apps to “fix” your device
  • You’re pressured to stay on the phone or not call anyone else

If in doubt, hang up, delete, or double check with someone you trust.


1. Protecting Your NHS and Medical Accounts

  • Use strong, unique passwords for your NHS login, GP apps (e.g. Patient Access, myGP), or hospital portals.
  • Enable two-factor authentication (2FA) wherever it’s offered.
  • Never share your NHS login or codes with anyone.
  • Always go directly to the official app or website, not through links in emails or texts.

2. Beware of Scams

  • Scams can take many forms — phone calls, emails, texts, or fake websites.
  • Be especially wary of anyone offering money, discounts, prizes, or urgent deals.
  • Criminals may pose as trusted organisations like your bank, utility provider, government, or even the NHS.
  • As a general principle: if something seems too good to be true — such as offers of free money, major discounts, prizes, or miracle cures — it almost certainly isn't real. Be suspicious of anything that promises unusually high benefits for little or no effort.
  • If in doubt, forward suspicious messages to [email protected] (Link) or speak to someone you trust before taking action.

3. Using Online Support Groups Safely

  • Facebook groups and forums can be great for connection, but don’t post:
    • Your address, phone number, or full date of birth
    • Photos of prescriptions or test results
  • Don’t click links shared by strangers, even if they seem friendly.
  • Moderators or admins should never ask for sensitive personal details.

4. Shopping and Donations

  • Be cautious when buying medical supplies or donating online.
  • Stick to trusted UK pharmacies and charities.
  • Watch for copycat sites that look like legitimate health organisations.

5. Email, Phone & Text Safety

  • Don’t click on links or open attachments in messages claiming to be from the NHS, unless you were expecting them.
  • Never share passwords or bank details over email or text.
  • Never give out your account numbers or passwords, especially if someone is trying to rush or pressure you.
  • Scam texts can fake NHS or GOV.UK addresses — check official sites if unsure.
  • Even texts or emails that appear to come from your bank can be faked. A common red flag is a message saying that a second text or email will come from a different number or sender — ask yourself why a genuine organisation would do this. Real authorities go to great lengths to be verifiable.
  • If someone calls and tries to rush or scare you, hang up and call back using an official number from the NHS or your GP’s website.
  • If in doubt — or even as a general principle — hang up and call a number you can verify yourself, such as:
    • The number printed on the back of your bank card
    • The official website of a company or authority (searched independently)
  • Avoid using any contact information provided by the caller or in a suspicious message — treat it as untrustworthy until confirmed.
  • To check a suspicious link in a text, don’t click — instead, search for the organisation’s website directly or ask someone you trust.

6. If You're Shielding or Vulnerable

  • You may be more targeted by scams pretending to offer:
    • COVID-19 test kits, antifungal treatments, or priority delivery slots
    • Access to urgent medical appointments or services
  • Verify any offer with your NHS care team before taking action.

7. Keeping Your Devices Safe

  • Install antivirus and keep your phone/tablet/computer updated.
  • Always accept software updates — they patch security flaws that criminals may try to exploit.
  • Set devices to auto-lock and use a passcode or fingerprint.
  • Avoid using public Wi-Fi for medical logins or financial information.

Do You Still Need Antivirus?

  • Windows PCs: Yes — always install antivirus. Microsoft Defender (built-in) is good and free. You can also consider free versions of AVG, Avast, or Bitdefender.
  • Mac computers: Less targeted, but still recommended. Free options include Avira or Sophos Home.
  • Android phones: A good idea, especially if you install apps outside the Play Store. Try Bitdefender or AVG.
  • iPhones/iPads: Antivirus apps aren’t usually needed if you keep iOS updated and install apps only from the App Store.

Whichever device you use, updates and cautious browsing are just as important as antivirus software.


8. Best Ways to Use Strong Passwords

Cyber security can be time-consuming and even irritating — but as malicious activity becomes more sophisticated, it’s worth the effort. Consider using different levels of passwords for different kinds of accounts:

  • Low-level passwords for things like newsletters or forums
  • High-level, strong passwords for NHS, banking, or health-related logins

Make Passwords Long and Unique

  • Use at least 12 characters, mixing letters, numbers, and symbols
  • Avoid personal info like names or birthdates

Use a Password Manager

  • Tools like Bitwarden, 1Password, or Apple Keychain securely store passwords
  • You only need to remember one master password

Use Passphrases for Important Accounts

  • Combine random words to create a memorable but strong password, like:
    • Correct!Horse-Battery!Staple99

Turn On Two-Factor Authentication (2FA)

  • Adds a second layer of protection, such as a code from your phone
  • 2FA ties your account to a specific device (like your phone), meaning a criminal would need access to that device as well as your password to break in

Use a Unique Password for Every Account

  • Never reuse passwords

Avoid These Mistakes

Mistake Better Option
Reusing passwords Use a password manager
Writing them down Use encrypted storage
Adding "123" to a word Use unrelated, random words/symbols

When to Change Passwords

  • If your account may have been hacked
  • If the same password is used elsewhere

Is It Safe to Use Chrome or Other Browser Autofill?

Using Chrome, Firefox, Safari, or Edge to autofill logins can be safe with the right precautions:

  • Your device should be private and locked with a passcode or fingerprint
  • Your browser and operating system should be kept fully up to date
  • You should avoid storing logins for sensitive accounts (e.g. banking, NHS login)

Risks to consider:

  • Passwords stored in browsers can be accessed by malware or rogue extensions
  • If someone gets access to your device, they may access saved logins

Safer Alternative:

  • Use a dedicated password manager (like Bitwarden, 1Password, or Dashlane)
  • These offer stronger security and are harder for malware or hackers to access

If you do use browser autofill, protect your device and account with:

  • Two-factor authentication for your Google, Apple, or Microsoft account
  • A strong device password or biometric lock

9. Finding the Happy Medium

Cybersecurity doesn’t have to take over your life — the key is to find a realistic balance between staying safe and staying sane:

  • Focus on protecting your most important accounts first — especially NHS, email, banking, and anything medical
  • Don’t ignore warning signs, but don’t feel you have to be perfect with every app or device
  • Use automation where possible (e.g. password managers, browser autofill, device lock)
  • Ask for help if you’re unsure — carers, family members, or digital support charities can assist

Think of it like seatbelts — you hope you never need them, but they’re worth the hassle when something goes wrong.


Useful Links


Remember: Your health is private and valuable. Treat your medical and personal information like you would your bank details. Stay cautious, ask questions, and when in doubt, ask a trusted health professional or carer.


🫁 Is It an ABPA Flare or a Bronchiectasis Flare? How to Tell the Difference

If you have aspergillosis, especially ABPA (Allergic Bronchopulmonary Aspergillosis) and bronchiectasis, it can be hard to know which one is flaring up when your lungs feel worse. They often overlap — but there are some clues that can help.


🔍 How the Two Conditions Are Different

Feature ABPA Flare (Allergic Reaction to Aspergillus) Bronchiectasis Flare (Infection in Damaged Airways)
Main cause Your immune system reacting to Aspergillus Infection in widened, inflamed airways
Symptoms you may notice - Chest tightness or wheezing
- Thick, sticky mucus
- Feeling more tired
- Occasional low-grade fever
- Wet cough with more sputum
- Sputum changes colour (green/yellow)
- Fever, chills, or general unwell feeling
How it starts May come on gradually or after exposure to damp/mould Often starts after a cold or virus
What helps most Steroids (inhaled or oral), sometimes biologics Antibiotics and chest physiotherapy
What tests may show - Raised IgE or eosinophils
- CT may show mucus plugs
- Raised CRP or white cells
- Sputum may grow bacteria or fungus
What to ask your doctor “Is my IgE or eosinophil count up?” “Do I need a sputum test or antibiotics?”

🧭 What Can You Do as a Patient?

  • 📝 Keep a symptom diary – especially note changes in:

    • Sputum colour or amount

    • Wheezing or chest tightness

    • Tiredness or sleep quality

  • 🧪 Ask for the right tests:

    • Blood tests like IgE and eosinophils for ABPA

    • CRP, white blood count, and sputum tests for bronchiectasis

  • 🩺 Don’t guess or self-treat – steroids and antibiotics work in different ways, and using the wrong one can make things worse or mask important signs.


💬 Final Thought

It's very common for people with aspergillosis to feel confused by flare-ups — you're not alone. Learning to spot your own patterns, and getting support from your specialist team, can make a real difference.