UK National RSV vaccination program launched
Respiratory Syncytial Virus (RSV) is mostly a minor ‘common cold’ for us, but for the very young and the elderly, it can cause severe infections eg pneumonia. Each year it can cause 30,000 hospitalisations and 20-30 deaths amongst infants, whilst amongst the elderly it can cause around 9,000 hospital admissions, mostly in those aged over 75.
Conversations with a few of our aspergillosis patients suggest that this is a point of concern for them as although asthma & aspergillosis is not specifically mentioned as a risk factor for infection, many have young children or grandchildren who they are wary of visiting during the winter months for fear of catching an RSV infection.
RSV infections usually peak during the winter months in the UK.
We now have two new vaccines available to help prevent infection and hospitalisation, and the UK government has opted to introduce a nationwide program to vaccinate the most vulnerable i.e. pregnant women to protect the child after birth and those aged 75-79. The program will start in Scotland on 18th August and 1st September for England, Wales and N. Ireland.
For full details go here
CPA patients have impaired neutrophil response to infection
A new paper from a research group in India has compared people who have tuberculosis (Tb) with those who have Tb and then developed chronic pulmonary aspergillosis (CPA). CPA develops in patients with Tb quite commonly and for many years it has been speculated that the mould grows on the lung scar tissue left behind by a Tb infection.
The researchers looked at many components of the patient’s immune system to try to see if any differed between the two as this would potentially tell them why one patient might develop CPA while another doesn’t.
Significantly the research team found that those patients who went on to develop CPA had reduced intensity of ‘neutrophil burst’, which is the release of reactive oxygen chemicals that are important in the fight against infection. They also had impaired Th1 cell response which is important as Th1 cells are part of the patient’s normal response to infection and they produce cytokines like interferon-gamma (IFN-γ), interleukin-2 (IL-2), and tumor necrosis factor-alpha (TNF-α). In turn, these trigger cytokines activate macrophages, enhance the phagocytic (pathogen-eating!) ability of immune cells, and stimulate the production of antibodies that mark pathogens for attack.
In short, we now have a clearer understanding of at least one part of the immune system of a CPA patient that isn’t working as well as it should, and which would directly lead to them being more vulnerable to infection.
The next question is ‘why are these patients unable to produce the normal levels of neutrophil burst and Th1 cell response?’ There are several possibilities including:
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- Genetic disorder
- Immunosuppressive medication
- Chronic diseases eg diabetes, renal failure, liver disease
- Malnutrition/eg Vitamin D deficiency
- Alcohol abuse
- Severe infection
- HIV
- Exposure to some toxins (eg mercury, lead
- Autoimmune disorder
Some of these may apply to the patients in this study but it is not yet clear which are the most likely. There is more work to do!
What does this mean for treatment of CPA?
The INCAS study, sets out to assess if CPA patients benefit when they are given supplementary doses of interferon-gamma. This is one of the cytokines found to be inhibited in CPA patients in the study discussed above, so if these patients improve it is good evidence that we have found one of the important causes of susceptibility to CPA, and we will already have a medication to partly treat it.
English prescription charge to rise 1st May 2024
Charges for prescriptions and prescription prepayment certificates (PPCs) will increase by 2.59% (rounded to the nearest 5 pence) from 1 May 2024. Charges for wigs and fabric supports will increase by the same rate.
A prescription will cost £9.90 for each medicine or appliance dispensed, an increase of 25 pence. The 3-month PPC will cost £32.05 and the 12-month PPC will cost £114.50.
The hormone replacement therapy (HRT) PPC will cost £19.80, an increase of 50 pence. This is because the rate is set at twice the single prescription charge.
Check what help you could get to pay for NHS costs
Chronic illness diagnosis and guilt
Living with a chronic disease can often lead to feelings of guilt, but it's important to recognize that these feelings are common and perfectly normal. Here are some reasons why individuals with chronic illnesses may experience guilt:
- Burden on others: People with chronic illnesses may feel guilty about the impact their condition has on their loved ones, such as needing assistance with daily tasks, financial strain, or emotional stress. They may feel like they're a burden on their family and friends, which can lead to feelings of guilt and self-blame.
- Inability to fulfill roles: Chronic illnesses can affect a person's ability to fulfil their roles and responsibilities, whether it's at work, in relationships, or within their family. They may feel guilty for not being able to meet expectations or for having to rely on others for support.
- Perceived lack of productivity: Chronic illnesses can limit a person's ability to engage in activities they once enjoyed or pursue their goals and aspirations. They may feel guilty for not being as productive or accomplished as they were before their diagnosis.
- Self-blame: Some individuals may blame themselves for their illness, whether it's due to lifestyle factors, genetics, or other reasons. They may feel guilty for not taking better care of themselves or for somehow causing their condition.
- Comparison with others: Seeing others who appear healthy and able-bodied may trigger feelings of guilt or inadequacy in individuals with chronic illnesses. They may compare themselves to others and feel guilty for not being able to live up to societal expectations or norms.
Dealing with feelings of guilt associated with chronic illness can be challenging, but it's important to address them in a healthy and constructive way. Here are some strategies for coping with guilt:
- Practice self-compassion: Be kind to yourself and recognize that having a chronic illness is not your fault. Treat yourself with the same compassion and understanding that you would offer to a loved one in a similar situation. You have an awful lot to come to terms with and it may take some time, give yourself that time and space.
- Seek support: Talk to trusted friends or people who understand because they have been through the same experience eg in one of the support groups at the National Aspergillosis Centre, family members, or a therapist about your feelings of guilt. Sharing your emotions with others who understand can help validate your experiences and provide comfort and reassurance.
- Set realistic expectations: Adjust your expectations and goals to align with your current abilities and limitations. Focus on what you can do rather than dwelling on what you can't, and celebrate your accomplishments no matter how small. In other words to use a phrase uttered regularly in the NAC support groups - find your new normal.
- Practice gratitude: Cultivate a sense of gratitude for the support and resources available to you, as well as the things that bring you joy and fulfilment despite your illness. Focus on the positive aspects of your life rather than dwelling on feelings of guilt or inadequacy.
- Engage in self-care: Prioritize self-care activities that promote your physical, emotional, and mental well-being, such as getting enough rest, eating a balanced diet, exercising within your limits, and engaging in activities that bring you pleasure and relaxation.
- Challenge negative thoughts: Challenge negative thoughts and beliefs that contribute to feelings of guilt or self-blame. Replace them with more balanced and compassionate perspectives, reminding yourself that you are doing the best you can under challenging circumstances.
Remember that it's okay to seek professional help if you're struggling to cope with feelings of guilt or if they're significantly impacting your quality of life. A therapist or counsellor can provide additional support and guidance tailored to your specific needs and circumstances.
NOTE You may find it useful to also read our article on grief.
Graham Atherton, National Aspergillosis Centre April 2024
ABPA guidelines update 2024
Authoritative health-based organisations throughout the world occasionally release guidelines for doctors on specific health problems. This helps everyone give patients a consistent level of the right care, diagnosis and treatment and is particularly useful when the health problem is relatively uncommon and access to expert opinion is difficult.
The International Society for Human and Animal Mycology (ISHAM) is one such international organisation that specialises in fungal diseases. It runs a lot of 'working groups' designed to address and discuss a whole range of fungal infections, run by ISHAM members from a wide range of backgrounds.
One such group is the ABPA working group, and this group has just released an update to its clinical practice guidelines for ABPA.
The new guidelines introduce a range of changes designed to efficiently capture more cases of ABPA, enabling the patient to get the right treatment. For example they suggest reducing the requirement for a total IgE test result score of 1000IU/mL to 500. They also suggest that all new admissions who are adults with severe asthma are routinely tested for total IgE, and children who symptoms are difficult to treat should also be tested. ABPA should be diagnosed when there is radiological evidence or appropriate predisposing conditions eg asthma, bronchiectasis along with IgE >500/IgG/eosinophils.
Doctors should take care not to miss cases of fungal sensitisation caused by fungi other than Aspergillus (ABPM).
Instead of staging ABPA, they suggest putting the patient into groups that don't suggest progression of the disease.
The group suggests not routinely treating ABPA patients who have no symptoms, and if they develop acute ABPA oral steroids or itraconazole. If the symptoms keep recurring then use a combination of prednisolone and itraconazole.
Biologic medication is not appropriate as a first option for treating ABPA
Salbutamol nebuliser solution shortage
We have been informed that there is an ongoing shortage of salbutamol solutions for nebulisers that is likely to last until summer 2024. If you live in Greater Manchester and you have COPD or asthma your GP has been provided with guidelines to ensure that any impact on your care is minimised, and your GP will be able to advise you further.
GPs elsewhere in the UK will also need to prepare, and update your action plan accordingly.
If at all concerned contact your GP for advice, as all should be aware of this situation.
Interactive tool for asthma patients to help self-assessment
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Asthma is a complex disease with many different causes & triggers. Sometimes asthma symptoms gradually get worse despite all efforts to control them, and one way that happens is when someone becomes allergic to Aspergillus. Allergic BronchoPulmonary Aspergillosis (ABPA) and Severe asthma with fungal sensitisation (SAFS) are two possible outcomes. This progression usually happens slowly and gradually so it is difficult to tell when the allergy began. This tool can help you assess if you need more help from your doctors, and what help may be available.
Asthma + Lung UK has developed an interactive tool to enable people with poorly controlled asthma to self-assess their likelihood of having severe asthma and ask for the support they need. This can be a useful way to find out if you could benefit from biologics (or other therapy).
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Do you need a Patient Information Leaflet for your medication?
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Patient Information leaflets (PIL) are meant to be enclosed with every pack of medication, in fact, it is a legal requirement unless all the relevant information is on the packaging. The PIL must contain all the information needed for a patient to be able to take the medication safely and effectively, so the leaflet includes details of dose, how to take the medication, side effects, and much more. It is strongly suggested that the patient read through all the information before taking the medication, especially if it is the first time that the patient has taken the enclosed drug.
Despite the law, there may be reasons why you might not have received a PIL with your latest drug. Sometimes a pack has been split by the pharmacist between more than one patient for example. If you need a PIL and you didn't receive one you can return to your pharmacist who should be able to source one for you, and for those who have access to the internet, you can also find a PIL for all medications online.
Go to medicines.org.uk and search for your prescription drug. The documents on this website are fully verified by UK govenment authorities.
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Unvalidated Laboratory Testing
Commercial laboratories can sell their diagnostic tests directly to the public, or they can be ordered by non-NHS providers of healthcare. The reasons given can sound very persuasive about how useful those test results can be - for example, testing for organic acids in your urine to check your nutritional status or testing for mycotoxins in your urine to assess if you have been exposed to excessive airborne mould spores. Unfortunately, these results are often useless for the purpose intended.
It is important that testing is validated for clinical use for the purpose it is being used for, for example:
- An Organic acid profile in urine is validated and used by the NHS for testing patients for very rare genetic problems that lead to an accumulation of an organic acid and a deficiency in certain cellular products. These levels are likely to be high and the result is clear and consistent from test to test. These tests are likely to be carried in in very young children who have inherited an abnormal gene. https://www.southtees.nhs.uk/services/pathology/tests/organic-acids-urine/.
- An Organic acid profile in urine is NOT validated to run on adults who have a normal genetic profile and have no signs or symptoms of metabolic disease. The results are going to need highly specialised doctors to interpret the results. If used for the purpose of, for example, assessing the nutritional status of a patient there is no evidence that the result will tell you or your doctor anything useful. Consequently these are very unlikely to be worth the cost.
If you are tempted to purchase one of these tests it is well worth checking this website for advice https://labtestsonline.org.uk/tests/unvalidated-or-misleading-laboratory-tests
Osteoporosis (Thinning bones)
Many people with aspergillosis are vulnerable to osteoporosis, partly due to some of the medication they take, partly due to their genetics and partly age.
There is a complete guide for the treatment of osteoporosis by the NHS at the National Institute for Health and Care Excellence (NICE) called Osteoporosis - prevention of fragility fractures and you can read it here.
However, you may prefer the easier-to-read guidelines offered by the Royal Osteoporosis Society which is comprehensive and excellent. There is even a helpline manned by a specialist nurse during office hours Monday-Friday.
There are lots of options for treatment available!