Thinking about joining a clinical trial? What are your concerns?

Running clinical trials are how doctors and researchers improve your treatment and care, and how new forms of diagnosis for aspergillosis are advanced. It is particularly difficult to get volunteers when the number of people affected by a disease is small – and aspergillosis is one of those diseases. If we can’t get enough people in trials then the value of that work is weakened and there can be less chance that a new treatment will be made available, or a new way to diagnose those at risk from aspergillosis might be delayed.

That said, there are many perfectly good reasons why someone may not volunteer, and it is a very personal decision. If trials are not for you for any reason then you must not feel compelled to do so. We recently ran a poll on our Facebook group to try to identify some concerns that people may feel with volunteering. The most frequent were:

  1. I live too far away.
    This is fair enough. Most trials are based in or close to large cities and will ask you to travel to the trial centre regularly. There is no point in joining a trial if that journey is arduous and you would be unlikely to be able to travel at any point.
  2. Worried about side effects.
    Side effects happen when you are taking many medications and may well happen if you are taking a new treatment. However you will have a dedicated member of staff looking after you to remedy any that crop up, and if the worst happens and you cannot tolerate the side effect you can leave the trial with our thanks. You are always in control.
  3. I am worried that I might be asked to stop taking my current medication and be given the placebo.
    Before trials are run in the UK and many other countries they all must be passed by an ethics committee. The rules of ethics are guided by a number of national and international bodies to ensure ethical conduct, patient safety, and scientific validity. Allowing one arm of a trial to leave patients untreated for an infectious disease is generally unethical and unlikely to be approved, particularly if effective treatments are available. In most cases a test drug will be offered with standard treatment and compared with a placebo also with standard treatment. Neither arm will be untreated. NB once a new drug has gone through this phase and been shown to be effective at controlling eg aspergillosis, then it may be offered on its own during the next trial if ethics agree.
  4. I rarely hear about any trial that I might be able to volunteer for.
    Most people will hear about a trial when they are asked to join one by their doctor. Most doctors running a trial will check that you fall within the specific trial criteria before approaching you. This saves time but of course, it can only be successful if you see enough appropriate patients to ask, which is why specialist centres with lots of patients run so many trials. If you do not attend a specialist centre but would like to be assessed to participate in a trial you can ask your doctors or do your own research – click on the link below.

UK Clinical trials for aspergillosis

Thanks for considering taking part in a clinical trial.

by GAtherton

Biologics & ABPA - what are they and what can they do?

Biologic medications (also known as biologics) are a class of drugs derived from living organisms or their cells. These treatments are used for various conditions, especially those involving the immune system, such as autoimmune diseases, cancers, and chronic inflammatory disorders. Here’s a breakdown of biologics:

1. What Are Biologics?

  • Biologics are large, complex molecules made using biotechnology. They can be derived from living organisms such as bacteria, yeast, or animal cells.
  • Unlike traditional medications (chemically synthesized), biologics are produced through genetic engineering or cell culture techniques.

2. Types of Biologic Drugs:

  • Monoclonal Antibodies (mAbs): These are engineered antibodies designed to target specific proteins or cells, such as tumor cells or immune system components. Examples include drugs like adalimumab (Humira) for rheumatoid arthritis and rituximab (Rituxan) for certain cancers.
  • Interferons: Proteins that modify immune system activity. They are used for conditions like multiple sclerosis and hepatitis C.
  • Vaccines: Biologic drugs used to stimulate the immune system to protect against infectious diseases (e.g., the flu vaccine, COVID-19 vaccines).
  • Cell and Gene Therapies: These involve altering genes or using stem cells to treat genetic disorders or cancers. CAR T-cell therapies are an example for cancer treatment.

3. Conditions Treated by Biologics:

  • Autoimmune Disorders: Such as rheumatoid arthritis, Crohn’s disease, and psoriasis.
  • Cancer: Biologics like monoclonal antibodies and immune checkpoint inhibitors target cancer cells.
  • Infections: Some biologics, including vaccines, protect against infections like hepatitis, flu, and COVID-19.
  • Chronic Inflammatory Conditions: Such as asthma and inflammatory bowel disease (IBD).

4. Advantages of Biologics:

  • Targeted Action: Biologics can target specific parts of the immune system or cells involved in disease, leading to more effective treatments with fewer side effects compared to traditional drugs.
  • Personalized Treatments: Some biologics can be customized based on a patient's genetics, improving outcomes for certain conditions.

5. Limitations and Side Effects:

  • Expensive: Biologics tend to be more expensive than traditional medications due to the complex production process.
  • Injection or Infusion: Many biologics are administered through injections or intravenous infusions rather than oral tablets.
  • Immune System Effects: Since biologics modify immune system function, they can increase the risk of infections and other immune-related side effects.

Examples of Biologic Medications:

  • Humira (adalimumab) for autoimmune diseases.
  • Keytruda (pembrolizumab) for cancer treatment.
  • Enbrel (etanercept) for rheumatoid arthritis.

Biologics are reshaping the treatment landscape, particularly in conditions where traditional medications were less effective.

In the case of Allergic Bronchopulmonary Aspergillosis (ABPA), biologic medications are increasingly being explored and used as part of treatment, particularly for patients with more severe or resistant forms of the disease. ABPA is an allergic reaction to the fungus Aspergillus, which can lead to airway inflammation and lung damage. Biologic medications, often aimed at modulating the immune system, help in managing this complex condition, especially when conventional treatments like corticosteroids fail to control symptoms or lead to significant side effects.

How Biologics Help in ABPA Treatment:

  1. Targeting Immune System Pathways:
    • Biologics used in ABPA primarily work by targeting specific immune system pathways that drive the inflammatory response triggered by the Aspergillus fungus.
    • For example, biologics that target interleukin-5 (IL-5), such as mepolizumab (Nucala), can help reduce eosinophil levels, a type of white blood cell involved in allergic reactions and inflammation in ABPA. Dupixent, another biologic, targets IL-4 and IL-13, which are cytokines involved in the inflammatory cascade in ABPA, potentially improving lung function and reducing exacerbations .
    • Omalizumab (Xolair) acts directly on the patients IgE antibodies, preventing them triggering allergic inflammation
  2. Reducing Steroids - For ABPA patients who require long-term corticosteroid use, biologics may offer an alternative, reducing dependence on steroids and lowering the risk of long-term steroid side effects (e.g., osteoporosis, diabetes, and weight gain).
    • Biologics can provide a more targeted approach, addressing the underlying immune mechanism, rather than just suppressing the overall immune response with steroids .
  3. Clinical Evidence:
    • In trials, biologics like mepolizumab have shown improvements in asthma control and reduced exacerbations, suggesting potential benefits for ABPA patients with significant asthma components.
    • Dupilumab has also demonstrated potential benefits in patients with ABPA and associated asthma, showing improvements in lung function and reduction in eosinophil levels, thus addressing both the underlying inflammation and allergic reactions .
  4. Safety and Efficacy:
    • While biologics are typically used in cases where standard treatments (steroids, antifungals) are not sufficient or appropriate. These medications are generally well-tolerated, but they do carry risks, such as increased susceptibility to infections due to immune system modulation** .

Summary:

Biologic therapies represent an option for patients with ABPA, particularly those with severe symptoms or who struggle with long-term steroid use. By targeting specific immune pathways, biologics help reduce inflammation and improve lung function without the broad immunosuppression of steroids. Drugs like mepolizumab and dupilumab are showing encouraging results, though their use in ABPA is still being refined and evaluated in clinical trials.

If you're exploring biologics for ABPA treatment, consulting with a specialist in pulmonary or immunologic disorders is crucial, as the benefits and risks of these drugs need to be carefully balanced for each individual patient.

**One common concern is whether these treatments could increase susceptibility to viral infections, particularly respiratory viruses.

Immune Modulation and Viral Infections: Omalizumab (Anti-IgE): Omalizumab reduces IgE levels, which are primarily involved in allergic reactions, not antiviral immunity. Studies show that it may actually decrease the frequency of respiratory viral infections by reducing inflammation and preventing exacerbations triggered by viruses. In clinical trials, omalizumab was not associated with increased viral infection rates and has been shown to lower asthma exacerbations caused by viral infections.

Mepolizumab and Benralizumab (Anti-IL-5): These biologics target IL-5, which reduces eosinophil counts. Eosinophils play a minor role in viral defense, but their reduction does not seem to impair the body's ability to fight viruses significantly. Data suggest that mepolizumab and benralizumab do not increase the incidence of viral infections and can reduce asthma exacerbations, including those triggered by viruses.

Dupilumab (Anti-IL-4/IL-13): Dupilumab inhibits IL-4 and IL-13 signaling, key cytokines in allergic inflammation. It is not associated with increased viral infection susceptibility in clinical trials. It may enhance antiviral defenses by reducing Th2-skewed inflammation, potentially allowing the body to mount a better response to viruses.

Evidence from Studies: Studies have consistently shown that biologics can reduce asthma exacerbations, many of which are triggered by viral infections, suggesting they do not compromise the immune system's ability to fight viruses. No significant increase in viral infections has been observed in large clinical trials for these medications, and they are generally considered safe in this context.

Conclusion: Biologic medications for asthma do not appear to increase vulnerability to viral infections. In fact, they may reduce the risk of virus-induced asthma exacerbations by controlling airway inflammation. However, patients with severe asthma or comorbid conditions should always consult their healthcare provider regarding potential risks.

by GAtherton

Olorofim - a promising new antifungal candidate for aspergillosis treatment.

Olorofim represents a significant advancement in treating aspergillosis, particularly for patients who cannot tolerate or do not respond to existing antifungal therapies. Here’s why it’s important:

1. Novel Mechanism of Action

  • Olorofim is the first antifungal in a new class called orotomides. It inhibits dihydroorotate dehydrogenase, an enzyme essential for fungal pyrimidine biosynthesis.
  • This mechanism is entirely distinct from existing antifungal classes (azoles, polyenes, and echinocandins), making it effective against strains resistant to current treatments​

2. Broad Spectrum and Potency

  • It has demonstrated activity against azole-resistant Aspergillus species and other difficult-to-treat moulds, addressing a major gap in antifungal therapy​

  • This includes rare and often lethal fungal infections like Scedosporium, Lomentospora, and Fusarium, as well as chronic conditions like Chronic Pulmonary Aspergillosis (CPA) and invasive aspergillosis.

3. Oral Administration

  • Unlike many current treatments that require intravenous administration (e.g., amphotericin B), olorofim is taken orally, improving convenience and accessibility for patients needing long-term therapy.

4. Targeting Unmet Needs

  • Aspergillosis, particularly invasive aspergillosis, has high morbidity and mortality rates, especially in immunocompromised patients (e.g., those with cancer, transplant recipients).
  • Current treatments face challenges like resistance, toxicity, and drug-drug interactions. Olorofim addresses these limitations by offering a safer and more tolerable alternative​

5. Regulatory Recognition

  • The drug has been granted Breakthrough Therapy Designation and Orphan Drug Status by the FDA and EMA, underscoring its potential to meet urgent medical needs​
    pharmaphorum GlobeNewswire

Future Implications

Olorofim's availability for treating Chronic Pulmonary Aspergillosis (CPA) depends on its successful progression through clinical trials and regulatory approval. Here's a summary of its current status and potential timeline:

  1. Current Status:
    • Olorofim is in Phase 3 clinical trials (OASIS trial) for invasive fungal diseases, including invasive aspergillosis, a related but more acute condition than CPA.
    • Although the drug has shown promising results in earlier studies, the FDA recently issued a Complete Response Letter, indicating that additional clinical data is required before it can be approved in the U.S.​​
    • CPA is not explicitly listed as a primary indication in current trials, but success in related aspergillosis treatments could lead to future trials or off-label use for CPA.
  2. Timeline to Approval:
    • If the ongoing Phase 3 trial and additional studies satisfy regulatory agencies, olorofim could receive an approval within 2–3 years for its initial indications (e.g., invasive aspergillosis).
    • For CPA specifically:
      • Additional trials may be needed to confirm efficacy and safety, potentially extending approval timelines by 3–5 years.
      • Off-label use might occur sooner, depending on clinician judgment and availability in regions with less restrictive policies.

Given the high unmet need in CPA and the novelty of olorofim’s mechanism, it is closely watched by both the medical community and regulators. If you're a patient with CPA, keeping in touch with your healthcare provider about ongoing trials and compassionate use programs may help you access new treatments sooner.

by GAtherton

Understanding How Our Lungs Fight Fungus

Airway epithelial cells (AECs) are a key component of the human respiratory system: The first line of defence against airborne pathogens such as Aspergillus fumigatus (Af), AECs play a crucial role in initiating host defence and controlling immune responses and are important in maintaining respiratory health and preventing infections that can lead to conditions such as aspergillosis. Research by the University of Manchester’s Dr Margherita Bertuzzi and her team sought to understand how AECs combat Af and what leads to vulnerabilities in these defences, particularly in individuals with underlying health conditions. 

Previous work by Dr Bertuzzi and her team demonstrated that AECs are effective in stopping the fungus from causing harm when they are functioning well. However, in people who are at higher risk, like those with weakened immune systems or existing lung conditions, if these cells are not working correctly, the fungus can take advantage of this situation.

This new research by Dr Bertuzzi and her team aimed to explore how AECs stop the fungus in healthy people and what goes wrong in people who get sick. The team looked closely at the interaction between the fungus and lung cells from both healthy individuals and those with certain diseases. Using advanced scientific methods, the team was able to observe the interactions between the lung cells and the fungus at a very detailed level.

What They Found 

Experiments showed that the stage of fungal growth was important and a surface carbohydrate – mannose (a sugar) also had a role in the process.

Specifically, they discovered that the fungus is more likely to be taken up by lung cells when it has been growing for a few hours compared to when it’s just a fresh spore. Swollen fungal spores that were locked at 3 and 6 hours of germination were 2-fold more readily internalised than those locked at 0 hours. They also identified that a sugar molecule called mannose on the surface of the fungus plays a big role in this process. 

Mannose is a type of sugar molecule that can be found on the surface of various cells, including those of pathogens like Aspergillus fumigatus. This sugar plays an important role in the interactions between the fungus and the host’s cells, particularly the AECs lining the lungs. In a healthy immune response, mannose on the surface of pathogens can be recognised by mannose receptors on immune cells, triggering a series of immune responses aimed at eliminating the pathogen. However, Aspergillus fumigatus has evolved to exploit this interaction, allowing it to adhere to and invade lung cells more effectively. The presence of mannose on the fungus’ surface facilitates its binding to mannose-binding lectins (MBLs) (proteins that bind specifically to mannose) on the surface of lung cells. This binding can promote the internalisation of the fungus into the lung cells, where it can reside and potentially cause infection.

The research highlighted the possibility of manipulating this interaction as a means to combat fungal infections. By adding mannose or mannose-binding lectins like Concanavalin A, researchers could significantly reduce the fungus’s ability to invade lung cells. This reduction was accomplished by essentially “competing” with the fungus for the binding sites on the lung cells or by directly blocking the fungal mannose, thereby inhibiting the interaction that facilitates fungal infection.

Why does it matter?

Understanding these interactions gives us important insights into how our lungs protect us from fungal infections and what goes wrong in people who are vulnerable to such infections. This knowledge could help in creating new treatments against pathogens like Aspergillus fumigatus.

You can read the full abstract here. 

by Lauren Amphlett

NHS Complaint Procedures

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The NHS values feedback, both positive and negative, as it contributes to service improvement. If you are unhappy about the care, treatment, or service you've experienced from the NHS or a GP, you are entitled to make your voice heard. Your feedback could instigate changes that benefit both you and others in the future, and there are many reasons why it is important:

Accountability

Healthcare providers are responsible for delivering a high standard of care. When they fall short, they should be held accountable. Complaints can serve as a mechanism for this accountability.

Quality Improvement

Feedback is essential for any organisation that aims to improve. By pointing out what went wrong, you can help the NHS identify areas for improvement. This can lead to changes in procedures, training, and resource allocation, ultimately raising the quality of care for everyone.

Patient Safety

If you've experienced a lapse in the standard of care, others may have too. By bringing attention to the issue, you could be helping to prevent future mistakes that compromise patient safety.

Transparency

Hospitals and GP practices benefit from being transparent about their successes and failures. Complaints can be a form of data that helps the public and the organisation understand how well it is performing.

Empowerment

Making a complaint can be empowering for patients and families. It gives you a voice and can help you feel like an active participant in your healthcare rather than a passive recipient.

Legal and Ethical Reasons

In some cases, complaints may lead to legal action or disciplinary measures against healthcare providers who have been negligent or have violated professional standards. 

Resource Allocation

Complaints can highlight areas where resources are lacking. This could lead to increased funding or other resources being allocated to address the issue.

Public Trust

Maintaining public trust is crucial for a publicly funded system like the NHS. Addressing complaints effectively is an integral part of maintaining this trust.

Understanding Your Rights

Before you proceed with a complaint, it's crucial to understand your rights as a patient. The NHS Constitution outlines these rights, which include:

  • The right to high-quality care
  • The right to be treated with dignity and respect
  • The right to confidentiality
  • The right to complain and have your complaint investigated

Initial Steps to Take 

Identify the Issue

Before making a complaint, clearly identify the issue you're facing. Is it related to:

  • Medical treatment?
  • Staff attitude?
  • Waiting times?
  • Facilities?

Clearly understanding the issue will help you articulate your complaint more effectively.

Direct Communication with the Service Provider

If you're unhappy with an NHS service, it's often beneficial to discuss your concerns directly with the service, either with the clinician or the service manager. Many issues can be sorted out swiftly at this stage.

Patient Advice and Liaison Service (PALS)

Before moving on to formal complaints, you may want to speak to the Patient Advice and Liaison Service (PALS) who can:

•Help you with health-related questions

•Help resolve concerns or problems 

•Tell you how to get more involved in your own healthcare

PALS can give you information about:

•The NHS

•The NHS complaints procedure

•Support groups outside the NHS

You can usually find a PALS office in NHS hospitals, or you can search for your nearest PALS online.

NHS Complaints Advocate

If you're contemplating making a formal complaint, you can seek assistance from an NHS complaints advocate. They can guide you in drafting a complaint letter and may accompany you to meetings. However, they cannot complain on your behalf.

Informal Complaints

Verbal Complaints

Sometimes, issues can be resolved quickly through informal channels. You can start by speaking directly to the clinician or a manager. This is often the quickest way to address minor concerns.

Written Complaints

If you're uncomfortable speaking directly or the issue is more serious, you can write an informal complaint via email or a letter. Make sure to include:

  • Your name and contact details
  • A clear description of the issue
  • What you would like to happen as a result

Formal Complaints

Identifying the Appropriate Body

You can complain directly to the NHS service provider (such as a GP, dentist, or hospital) or to the commissioner of the services. If your complaint involves multiple organisations, you need only file one complaint, and the organisation that receives it will coordinate with the others.

Time Constraints

Complaints should ideally be made within 12 months of the incident or of becoming aware of the issue. This timeframe can be extended under specific conditions.

Methods of Filing a Complaint

Complaints can be lodged verbally, in writing, or via email. If you're filing a complaint on someone else's behalf, their written consent will be required.

What to Anticipate After Filing a Complaint

  1. Acknowledgement: You should anticipate an acknowledgement and an offer for a discussion regarding handling your complaint within three working days.
  2. Investigation: Your complaint will undergo an investigation, and you'll subsequently receive a written response outlining the findings, apologies if warranted, and actions taken as a result of your complaint.
  3. Ombudsman: If you're not content with the outcome, you can escalate your complaint to the Parliamentary and Health Service Ombudsman.

Alternative Avenues for Feedback

  • Friends and Family Test (FFT): A quick and anonymous method for offering feedback.
  • Patient Reported Outcome Measures (PROMs): Specifically for patients who have recently undergone hip or knee replacement surgery.

Your opinion matters. If you're dissatisfied with the healthcare services you've received, you have the right to file a complaint. However, it's worth noting that the way complaints are made and handled is also important. Complaints should be constructive, specific, and based on facts to be most effective. They should be made through the appropriate channels and following the procedures set out by the healthcare provider.

For more in-depth information, you can visit the NHS website.
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by Lauren Amphlett

Living with & Managing Chronic Illness

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As many of you know, chronic conditions like Aspergillosis require more than just medical intervention. Chronic illnesses necessitate emotional resilience, adaptability, understanding, and physical strength. Patient-centric strategies have proven successful in managing illness and improving overall well-being and health outcomes, irrespective of the condition. The journey can be challenging, particularly when first diagnosed, but having an illness like Aspergillosis doesn't mean enduring a life of constant suffering.

 

What do we mean by manageable?

"Manageable" does not mean that your illness will completely disappear or you will no longer feel its effects. Instead, it means that the symptoms can be controlled to such an extent that they do not dominate your life or altogether remove your ability to function. Managing a chronic condition involves developing a comprehensive and tailored approach incorporating medication, lifestyle adjustments, emotional well-being, and social support.

 

Chronic conditions require more than medication

 

Understanding Your Illness 

Knowledge is power. Understanding your illness, its symptoms, triggers, and progression will help you manage it more effectively. Ask your doctor(s) questions, do your own research, and consider joining support groups where you can learn from others' experiences.

 

Acknowledging limitations 

When we discuss acknowledging limitations while living with Aspergillosis, there's a metaphor that captures this struggle: The Spoon Theory.

The Spoon Theory, conceived by Christine Miserandino, is a valuable metaphor within the chronic illness community to explain the energy required to live with such conditions. In this analogy, 'spoons' represent energy units. Each day, a person has a finite number of 'spoons' and must budget their activities to ensure they don't run out of 'spoons' before the day ends.

 

So, how does this relate to acknowledging limitations with Aspergillosis? 

 

Physical Limitations

With Aspergillosis, common physical symptoms like fatigue or breathlessness may require more 'spoons' than usual. Understanding your body's signals and resting when necessary helps you conserve your 'spoons'.

 

Emotional Limitations 

Chronic illness can be emotionally draining. It's normal to feel uncertain and anxious about your condition. According to the National Institute of Mental Health (NIMH), people with chronic illnesses may be more likely to suffer from depression. Therefore, depression is a common complication of chronic illness.

Managing feelings of anxiety or depression requires 'spoons'. Acknowledging your emotional health and seeking help and support when you need it can assist in managing your emotional energy better.

 

Social Limitations 

Every social activity costs 'spoons'. While it's crucial to maintain a social life, it's equally important to recognise when you might need to prioritise rest and recovery.

 

Work Limitations

The energy expended at work needs to be factored into your 'spoon' budget. Sometimes, it may require a conversation with your employer to adjust your workload or responsibilities to accommodate your health needs.

 

Understanding and applying the Spoon Theory to your life can be a powerful tool in acknowledging and managing your limitations. It's not about resigning yourself to these limitations but prioritising and becoming effective at working around them.

Each of you will have a different number of 'spoons' each day, and what may cost one spoon for some may cost five for another. That's why it's so crucial to respect and acknowledge our boundaries.

 

The power of exercise 

Exercise plays an integral role in maintaining our health and well-being. Regular physical activity can significantly improve quality of life, boost mood, enhance lung function, and strengthen the immune system. However, the thought of exercise might seem daunting given the physical constraints of Aspergillosis. But it's about finding what works best for you.

 

Exercise that suits your abilities 

Remember, the objective is not to exhaust yourself but to gradually improve your endurance and strength within your limits. Lower-intensity activities such as walking, stretching exercises, or chair-based workouts can be beneficial starting points. Even small activities like light household chores can contribute to your daily exercise.

 

Pulmonary Rehabilitation 

These are programmes specifically designed for people with lung conditions. They involve a combination of exercises to improve lung function, education, and emotional support. Trained healthcare professionals supervise these programmes to ensure safety and efficacy.

 

Breathing exercises 

Exercises like pursed-lip or diaphragmatic breathing can improve lung capacity and help manage breathlessness, a common symptom in Aspergillosis.

 

Yoga and Meditation 

Gentle yoga poses combined with mindful breathing can improve flexibility, balance, and strength while also helping with stress management.

 

Staying consistent

The key is regularity rather than intensity. Even 10-15 minutes of exercise daily can make a difference. As your endurance builds, you can gradually increase the duration and possibly the intensity of your workouts.

 

Work with professionals 

Always consult your care team before starting a new exercise regimen. They can guide you.

 

Listen to your body

Most importantly, listen to your body. If you feel excessively tired or experience difficulty breathing, it's time to rest. Remember, acknowledging your limits is not a weakness; it's an essential part of managing your health.

 

Mental health matters 

Living with a chronic illness like Aspergillosis can be physically challenging, but it also exacts a toll on our mental health. Anxiety, depression, stress, and feelings of isolation are not uncommon. Acknowledging these emotions and finding ways to manage them is as important as managing the physical symptoms of the illness.

 

Understanding the Impact

Chronic illnesses can lead to a range of emotional responses: fear about what the future holds, frustration over physical limitations, feelings of isolation due to changes in lifestyle or others' inability to fully understand your experience. Understanding that these are normal reactions to your situation is the first step towards addressing them.

 

Communication

One of the most powerful tools in managing mental health is open communication. This could be with family, friends, a support group, or a professional counsellor. Discussing your feelings can provide relief and offer new perspectives.

 

Professional Help

Psychologists, psychiatrists, and therapists can provide strategies to cope with the stress, anxiety, and depression that can accompany chronic illnesses. Cognitive-behavioural therapy, mindfulness-based stress reduction, and other techniques can help you navigate your emotional journey.

 

Peer Support

We talk about this a lot, and many of you reading this will already realise the benefits because you attend our weekly meetings. Connecting with others who are dealing with similar experiences can be incredibly helpful. Support groups provide a platform to share experiences, learn from others, and gain emotional comfort from knowing you're not alone.

 

Self-care

Prioritise activities that you enjoy and that help you relax. This could be reading, listening to music, gardening, or any hobby that provides a sense of calm. Mindfulness exercises, yoga, and meditation can also be effective in reducing stress and promoting mental well-being.

 

Depression is not a weakness 

It's not just the physical discomfort and limitations that pose a challenge. Still, the emotional burden carried with a persistent health condition can also be substantial. Thus, depression is a common complication of chronic illness. Still, it doesn't have to be a normal part of chronic illness. Depression can manifest through persistent sadness, loss of interest in previously enjoyed activities, difficulty sleeping, or changes in appetite. It's important to recognise that depression is not a sign of weakness or a normal part of living with a chronic illness. It's a serious but treatable condition. If you or someone you care for shows signs of depression, seeking help from healthcare professionals is crucial. Therapies such as cognitive-behavioural therapy, medication, or a combination of both can effectively manage depression. Remember, taking care of your mental health is a critical part of managing a chronic illness.

Remember, it's okay to have tough days. Your illness does not define you, and it's okay to ask for help when needed. Celebrate your achievements, no matter how small, and focus on the strengths that help you navigate your challenges.
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by Lauren Amphlett

Learning to control antifungal drug resistance from the environment

Spores of fungi including Aspergillus fumigatus, the main species that causes aspergillosis, have been found to propagate the growth of strains of fungi that are already resistant to those antifungal medications most commonly used in medical clinics to treat aspergillosis. This can render the most common treatments for aspergillosis useless, which is a concern for doctors.

Where do these strains come from? Most experts suggest that the use of commercial fungicides by farmers exposes the fungus to pesticides that closely resemble the antifungal drugs used by doctors. This exposure is likely to enrich the numbers of resistant spores found in the environment ie in compost, soil, and of course in/on the plant material produced by the farmers e.g. food crops, and flowering plants.

Can we stop using these antifungal chemicals as pesticides? A multi-disciplinary meeting designed to bring together experts from all sides of the debate took place in London on 13th July and those representing the growers outlined how important it is that farmers use these fungicides to prevent crop damage and to produce enough food to feed us all! Completely stopping their use on crops does not seem to be an option.

Given that it seems that there will be antifungal-resistant spores in the environment we live in for the foreseeable future we need to:

  • know where they are
  • know how to avoid inhaling them

Where might patients come into contact with most antifungal-resistant spores?

Farmers use antifungal pesticides on many crops including:

  • Fruits: Apples, grapes, peaches, strawberries, and tomatoes
  • Vegetables: Potatoes, onions, corn, and soybeans
  • Grains: Wheat, corn, and rice.
  • Nursery crops:  Roses, trees, and shrubs

Researchers have found antifungal-resistant Aspergillus fumigatus spores on many of these crops or the soil around them, at low levels (0 - 10% of samples).

Is this level of antifungal-resistant spores increasing?

When scientists looked at spore numbers they found that the number of resistant spores increased during the growing season as antifungal pesticides were applied to the crops, but this resistance did not survive the winter (1) and levels were back down to where they were the previous year.

It is apparent that handling crops, or the soil around them is a potential way to come into contact with some spores that are resistant to antifungal medications given in the clinic.

What is the likelihood of these spores causing an antifungal-resistant infection?

Researchers (1) have looked at how resistant the resistant spores are to the level of antifungal medication they will be exposed to in a patient and found that the proportion of the isolates that were resistant to the levels of antifungal medication used in patients was 1-4% - so very low.

Which crops are worst affected?

The most common material found to contain antifungal-resistant material was plant material waste originating from cut flowers and flowering bulbs and other types of waste produced in the industry in The Netherlands (2), so it is clear that composting can promote the growth of resistant spores. Ways to prevent this from happening are under development.

Other materials tested were household waste, wheat grain, poultry manure, cattle manure, horse manure, maize silage & fruit waste and of those antifungal-resistant spores were found only in fresh household waste.

Other researchers across the world (3) have detected antifungal-resistant spores in a range of crops and soils. Highest numbers of resistant spores (or perhaps in places where most research has been done) tend to be in India (rice), China (maize, some house plants, potato), USA (wheat, roses, apples), The Netherlands (orchids), Spain (onions, strawberries), Colombia (carrots) & Italy (grapes).

These were not exhaustive studies and we know that Aspergillus fumigatus (i.e. not antifungal-resistant) itself is found on far more plants/fruits/vegetables, so it stands to reason that if they are treated with antifungal pesticides then it may be possible to isolate resistant spores from them. It is clear that although there is a risk of inhaling antifungal-resistant spores from this plant material, the risk to the domestic consumer is low. Nonetheless, out of an abundance of caution, it might be best to take a few precautions:

a. Avoid handling cut flowers and flowering bulbs from The Netherlands

b. After purchase wash fruit and vegetables prior to storage in the home

c. Dispose of household waste in a timely manner

Action is being proposed and taken nationally and internationally to reduce the risk to aspergillosis patients in particular of inhaling antifungal-resistant spores of A. fumigatus and other fungi (4). Research is ongoing to learn more about what are the causal factors responsible for the increase in resistant spores, which are the main risks to human health and what we can do about it.

In time we should be able to prevent the growth of resistant isolates, ensuring that we have useful antifungal medication for years to come.

1. Effects of Agricultural Fungicide Use on Aspergillus fumigatus Abundance, Antifungal Susceptibility, and Population Structure

Authors: Amelia E. Barber https://orcid.org/0000-0002-3399-1037, Jennifer Riedel, Tongta Sae-Ong, Kang Kang, Werner Brabetz, Gianni Panagiotou, Holger B. Deising, Oliver Kurzai https://orcid.org/0000-0002-7277-2646AUTHORS INFO & AFFILIATIONS

DOI: https://doi.org/10.1128/mbio.02213-20

2. Emerg Infect Dis. 2019 Jul; 25(7): 1347–1353. doi: 10.3201/eid2507.181625

Environmental Hotspots for Azole Resistance Selection of Aspergillus fumigatus, the Netherlands

Sijmen E. Schoustra, Alfons J.M. Debets, Antonius J.M.M. Rijs, 1 Jianhua Zhang, Eveline Snelders, Peter C. Leendertse, Willem J.G. Melchers, Anton G. Rietveld, Bas J. Zwaan, and Paul E. Verweij

3. Azole-resistant Aspergillus fumigatus in the environment by cburks817 · MapHub

4. Nat Rev Microbiol. 2022; 20(9): 557–571.

Published online 2022 Mar 29. doi: 10.1038/s41579-022-00720-1

Tackling the emerging threat of antifungal resistance to human health

Matthew C. Fisher,1 Ana Alastruey-Izquierdo,2 Judith Berman,3 Tihana Bicanic,4 Elaine M. Bignell,5 Paul Bowyer,6 Michael Bromley,6 Roger Brüggemann,7 Gary Garber,8 Oliver A. Cornely,9 Sarah. J. Gurr,10 Thomas S. Harrison,4,5 Ed Kuijper,11 Johanna Rhodes,1 Donald C. Sheppard,12 Adilia Warris,5 P. Lewis White,13 Jianping Xu,14 Bas Zwaan,15 and Paul E. Verweij11,16

by GAtherton

COVID-19 News

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COVID-19 App no longer in use

The NHS COVID-19 app, which alerted close contacts of a positive case and provides the latest health advice about the virus, closed on 27 April 2023.

Over the past year, the success of the vaccination programme, increased access to treatments and high immunity in the population has enabled the government to target its COVID-19 services, meaning the app is no longer needed. The knowledge, technology and lessons learnt from the app will be used to help inform planning and response to future pandemic threats.

It is important that people continue to follow the latest guidance to protect themselves and others:

This includes reporting NHS lateral flow test results on GOV.UK. Those eligible for COVID-19 treatment must report their result so the NHS can contact them about treatment.

COVID-19 vaccination spring programme
The 2023 spring coronavirus (COVID-19) booster programme is now underway. A spring booster dose is being offered to:

  • adults aged 75 years and over
  • residents in a care home for older adults
  • individuals aged 5 years and over who are immunosuppressed

Those eligible can book their vaccination on the National Booking Service or NHS App.

The last date for the public to book spring boosters will be 30 June 2023.
The offer of a first and second dose of the COVID-19 vaccine will also come to an end for many people on 30 June. After this date, the NHS offer will become more targeted to those at increased risk, usually during seasonal campaigns.


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by Lauren Amphlett

Unblocking Airways: New approaches to preventing mucus plugs

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Excess mucus production is a common problem in people with Allergic Bronchopulmonary Aspergillosis (ABPA), and chronic pulmonary aspergillosis (CPA). Mucus is a thick mixture of water, cellular debris, salt, lipids, and proteins. It lines our airways, trapping and removing foreign particles from the lungs. The gel-like thickness of mucus is caused by a family of proteins called mucins. In individuals with asthma, genetic changes to these mucin proteins can thicken the mucus, making it more difficult to clear from the lungs. This thick and dense mucous builds up and can lead to mucus plugs, blocking the airways and causing breathing difficulties, wheezing, coughing, and other respiratory symptoms.

Doctors usually treat these symptoms with inhalable medications such as bronchodilators and corticosteroids to open the airways and reduce inflammation. Mucolytics can also be used to break down mucus plugs, but the only available medication, N-Acetylcysteine (NAC), is not very effective and can cause unwanted side effects. While current treatments can help manage symptoms, there is a need for effective and safe treatments to directly address the issue of mucus plugs.

 

To address this issue, 3 approaches are being explored:
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  1. Mucolytics to dissolve mucus plugs

Researchers at the University of Colorado are testing new mucolytics such as tris (2-carboxyethyl) phosphine. They gave this mucolytic to a group of asthmatic mice experiencing inflammation and excess mucus production. After treatment, mucus flow improved, and the asthmatic mice could clear mucus just as effectively as the non-asthmatic mice.

However, mucolytics work by breaking the bonds which hold mucins together, and these bonds are found in other proteins in the body. If the bonds are broken in these proteins, it could lead to unwanted side effects. Therefore, further research is needed to discover a drug that will only target the bonds in mucins, reducing the risk of side effects.
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2. Clearing crystals

In another approach, Helen Aegerter and her team at the University of Belgium are studying protein crystals which they believe drive mucus overproduction in asthma. These crystals, known as Charcot-Leyden crystals (CLC’s) cause mucus to become thicker, therefore harder to clear from the airways.

To address the crystals directly, the team developed antibodies that attack the proteins in the crystals. They tested the antibodies on mucus samples collected from individuals with asthma.  They found that the antibodies effectively dissolved the crystals by attaching themselves to the specific regions of the CLC proteins that hold them together. In addition, the antibodies dampened inflammatory reactions in mice. Based on these findings, the researchers are now working on a drug that could have the same effect in humans. Aegerter believes that this approach could be used to treat a variety of inflammatory diseases that involve excessive mucus production, including sinus inflammation and certain allergic reactions to fungal pathogens (such as ABPA).
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  1. Preventing excess secretion of mucus

In a third approach, pulmonologist Burton Dickey of the University of Texas is working to prevent mucus plugs by reducing the overproduction of mucus. Dickey's team identified a specific gene, Syt2, that is only involved in excessive mucus production and not in normal mucus production. To inhibit excess mucus production, they developed a drug called PEN-SP9-Cy that blocks Syt2's action. This approach is particularly promising as it targets mucus overproduction without interfering with the vital functions of normal mucus. Normal mucus production plays a critical role in protecting and maintaining the health of the respiratory and digestive systems. Although the initial results are promising, further research is necessary to evaluate the efficacy and safety of these drugs in clinical trials.
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In summary, mucus plugs present uncomfortable symptoms in ABPA, CPA and asthma. Current treatments focus on symptom management rather than directly addressing reduction or removal of mucus plugs. However, researchers are exploring 3 potential approaches, involving mucolytics, clearing crystals, and preventing excess mucus secretion. Additional research is required to confirm their effectiveness and safety, but approaches have shown promising results and may in future be one way we can prevent mucus plugs.

 

Further information:

Phlegm, mucus and asthma | Asthma + Lung UK

How to loosen and clear mucus 
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by GAtherton

Fungal vaccine developments

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The numbers of people at risk of fungal infections are increasing due to an aging population, increased use of immunosuppressive medications, pre-existing medical conditions, environmental changes, and lifestyle factors. Therefore, there is a growing need for new treatments or preventative options.

Current treatment options for fungal infections often involve the use of antifungal medications, such as azoles, echinocandins, and polyenes. These medications are generally effective in treating fungal infections, but they can have drawbacks. For example, some antifungal drugs can interact with other medications, leading to potentially harmful side effects. Additionally, overuse of antifungal drugs can contribute to the development of antifungal drug resistance, which can make treatment more challenging.

There has been a growing interest in the development of fungal vaccines as an alternative treatment. A fungal vaccine works by stimulating the immune system to produce a specific response against the fungus, which can provide long-term protection against infection. The vaccine could be given to at-risk individuals before exposure to the fungus, preventing infection from occurring in the first place.
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A recent study by researchers from the University of Georgia demonstrated the potential for a pan-fungal vaccine to protect against multiple fungal pathogens, including those that cause aspergillosis, candidiasis, and pneumocystosis. The vaccine, called NXT-2, was designed to stimulate the immune system to recognize and fight against several types of fungi.

The study found that the vaccine was able to induce a strong immune response in mice and additionally protect them from infection with several different fungal pathogens, including Aspergillus fumigatus, which is the main cause of aspergillosis. The vaccine was found to be safe and well-tolerated in the mice, with no adverse effects reported.

This study demonstrates the potential for a pan-fungal vaccine to protect against multiple fungal pathogens. While the study did not specifically address the use of the vaccine in patients with pre-existing aspergillosis infections, the findings suggest that the vaccine has potential to prevent aspergillosis infection in high-risk individuals.
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In summary, while the development of antifungal vaccines offers a promising potential alternative to the challenges posed by current treatment options for fungal infections, further research is needed to determine the safety and efficacy of the vaccine in humans, including those with aspergillosis, before it can be considered as a treatment option.

Original paper: https://academic.oup.com/pnasnexus/article/1/5/pgac248/6798391?login=false 
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by GAtherton