Assistance for Patients Who Cannot Afford Antifungal Drugs (US only)
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Copayment Assistance Now Available to At-Risk and Infected Patients
GERMANTOWN, Md. — October 12, 2016 — The HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans, today announced that it opened a new fund to provide assistance to patients who are at-risk of, or infected with, potentially life-threatening fungal infections, specifically Aspergillosis and Candidiasis. Through the fund, HealthWell will provide up to $3,000 in copayment assistance to eligible patients who are insured and have annual household incomes up to 400% of the federal poverty level.
According to the Centers for Disease Control and Prevention, anyone can get a fungal infection. Fungi are common in the environment, but they are more likely to cause infections in individuals with weak immune systems, such as anyone who has cancer, has had a stem cell or organ transplant, is taking a medication that weakens the immune system, or is hospitalized for an illness that weakened the immune system. Invasive fungal infections can affect the blood, heart, brain, eyes, bones, and other parts of the body.
Aspergillosis funding: https://www.healthwellfoundation.org/fund/fungal-infections-aspergillosis-and-candidiasis/
“Candida and aspergillus infections can spread from the gut or lungs through the bloodstream with serious ramifications,” said Dr. David Denning, President, Global Action Fund for Fungal Infections (GAFFI) and Former Director of the UK’s National Aspergillosis Centre, University Hospital of South Manchester. “In the more serious hospital cases, only half the patients survive, even with therapy, and all die without antifungal treatment. Long-term antifungal therapy is costly and required for many chronic conditions. Contributions to effective and affordable treatment and prevention will often be lifesaving.”
“Thanks to the continued generosity of our donors, we are now able to offer financial relief to patients living with invasive fungal infections as well as patients who may be at-risk of infection due to compromised immune systems,” said Krista Zodet, HealthWell Foundation President.“These patients, whether they are battling an active infection or require preventative medication, desperately need treatment. Our fund offers instant grant approvals and instant pharmacy card activation to provide these patients with immediate access to care and to potentially lifesaving medications.”
Submitted by GAtherton on Thu, 2016-10-13 15:25
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SIXTY-NINE PER CENT OF PEOPLE WITH ASTHMA TELL ASTHMA UK THAT STRESS IS AN ASTHMA TRIGGER FOR THEM.
People with chronic illness are subjected to particular health problems and have particular needs with regard to support on stress and anxiety. People who have respiratory infections such as aspergillosis are one group who have chronic health condition, many including asthma. This very useful article was written and promoted by Asthma UK on World Mental Health Day 2016.
Article written and published by Asthma UK: full article
Most of us will feel stress at some point in our lives because there are so many situations and experiences that can put extra mental or emotional pressure on us. Feeling lonely, anxious or worrying a lot can lead to stress, as can poor sleep, diet, or problems with money.
If you have asthma, and you're going through a stressful time, keep an eye on your asthma symptoms - 69 per cent of people with asthma tell us stress is an asthma trigger for them.
Why is stress an asthma trigger?
Stress causes a surge of stress hormones in our bodies. These are released to prepare us to either run away from danger or fight it (the "fight or flight" response). We react with symptoms such as a faster heart rate, tense muscles and breathing that is shallow and fast (hyperventilating). This change to our breathing pattern can put us at a higher risk of all our usual asthma symptoms, such as tight chest and coughing.
Another reason why stress can trigger someone's asthma is because of the things people do when they're stressed. You may notice that you lose your temper more easily when you're under stress, and anger is itself an emotional asthma trigger. Stress can mean we drink or smoke more, both asthma triggers in their own right. People with asthma who are stressed may also feel less able or willing to take their asthma medicines as prescribed, especially if long term stress means they're also dealing with anxiety and depression.
How do I know if stress is triggering my asthma symptoms?
It's usually not that difficult to recognise the things that are making us stressed. But sometimes we don't make the connection between stressful events and our asthma symptoms.
- If you think you might be under more stress than usual, ask yourself if your asthma's feeling worse than usual.
- If you've noticed your asthma is feeling worse than usual, consider what's going on in your life at the moment. Could a stressful situation have triggered your asthma symptoms?
- Try keeping a record of stressful situations alongside a symptom diary - this might show a pattern and help you recognise stressful situations or events that trigger your asthma symptoms.
A written asthma action plan helps you keep an eye on worsening symptoms and know what to do if you notice any.
The full article goes into more detail and contains terrific information for asthmatics on the following:
- When is stress most likely to trigger asthma?
- How can I cut the risk of stress affecting my asthma?
- Top stress tips
We can't always avoid stress in our lives but there are things we can do to help manage it. Whatever's going on for you, being aware of how stress is affecting you and your body is the first step to managing it. There's lots of advice on stress in books and online and plenty of methods you can try that may help you feel better and help you learn coping skills.
- Finding ways to reduce stress in your life is good for you and your asthma.
- Can I talk to someone about how stress affects my asthma?
Go to full article.
Submitted by GAtherton on Mon, 2016-10-10 11:04
Treat the Causes of Chronic Disease, Not the Symptoms
Rajan Chatterjee, a young GP advocating that we need to holistically assess the long term causes of chronic diseases such as diabetes, dementia and depression in order to successfully rid ourselves of those illnesses often without the need for medication. As a GP he has realised that there are a collection of contributory causes of many chronic diseases (diet, stress, sleep, physical activity, environment, infections, gut health) that we can each address and once we have ruled out or changed our personal practices or circumstances many chronic diseases can resolve. There can be no further need for some medical interventions that are commonplace at the moment.
We are not all the same, we all have different genetics but we also have differing lifestyles and environments. Rajan argues that doctors need to learn to treat symptoms less and think about long terms causes more. Similarly the patient needs to realise that the dozen harmful things that they do every day harm their health, and it is much better to tackle those things personally than go to a doctor for a medication to 'cover up' the resultant symptoms.
Is this the future of medicine?
How do I describe symptoms to my doctor?
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This subject is often glossed over, after all, how hard can it be to describe how you feel? The answer is that it is all too often pretty difficult!
The initial conversation between you and your doctor is usually one of the most vital few minutes you will spend with your doctor, as your subsequent diagnosis and treatment is strongly guided by what information you impart. For many of us, it may seem a simple process as long as the symptom is simple to describe and in an obvious place - for example, if you have a sharp pain in your knee it is easy to pinpoint. However, what if you have a rather less well defined uncomfortable sensation in your chest? You can't describe it as a pain and you can't point at the location with any accuracy other than 'it's on the left side'.
There might also be additional information that you can collect prior to the conversation (eg. for symptoms that come and go it can be useful to keep a diary). There are also apps for use on a smartphone that can help you record symptoms and other factors important to the management of your health.
Your doctor is skilled at guiding your thoughts to reach a quick conclusion, but it is worthwhile giving your first conversation some thought, to ensure that you are giving accurate information that you are happy describes what is happening. There are several tips and tricks that can help with this in this document in WikiHow. Some of the tips are reproduced below:.
1 Learn the basics of describing symptoms. There are four basic elements you should use to describe symptoms. Learning these will help you figure out your symptoms and best convey them to your doctor.[1]
- Tell your doctor how your symptoms feel. For example, if you’re experiencing headaches, use descriptive words like sharp, dull, stabbing, or throbbing. You can use these kinds of terms to describe many physical symptoms.
- Explain to or show your doctor the exact location in or on which you’re experiencing your symptoms. You want to be as specific as possible so say “the front of my kneecap is swollen and has throbbing pain” instead of something general like “I have pain on my leg.”[3] You should also note if the symptoms extend to another location.
- Mention how long you’ve had your symptoms. The more specific date you can pinpoint, the easier it may be for your doctor to figure out what is causing your symptoms.[4]
- Note how frequently you have or notice symptoms. This information can also help your doctor figure out what’s causing your symptoms. For example, you could say “I feel symptoms every day, especially after I work out,” or “I only notice my symptoms occasionally, like every few days.”
2. Figure out and write down your symptoms. It’s important to recognize your specific symptoms and write them down before you see your doctor. Not only will this help you best describe your symptoms, but will also ensure that you don’t forget to include any symptoms and how they affect you.[5]
- Make sure to take your list of symptoms, including the basic information on them, to your appointment with you.
- Note if symptoms are connected to specific activities, injuries, times of day, food or beverages, and anything else that exacerbates them. Also note if they affect your life in any way.[6]
3. Bring a current and cumulative patient profile to the appointment. A comprehensive profile of yourself as a patient includes information on conditions, hospitalizations, or surgeries you’ve had, what medications you have taken or are currently taking, and any allergy to medications or foods. This will help ensure that you don’t forget any vital information and also help your doctor understand your medical history.[7]
- You may not end up needing to refer to it, but if questions about your medical history come up, having your patient profile available will maximize the time you can spend discussing your current medical issue(s).[8]
- Bring your current medication bottles, which list the name & dose information. Make sure to include any herbal supplements you take as well.[9]
- You can create a patient profile by summarizing your medical history on a piece of paper.
4. Make a list of questions you have for your doctor. Write down a list of questions related to your most pressing concerns about your symptoms before you go to your doctor. This can also help maximize your visit and the time used describing your symptoms.[10]
- Address any concerns or worries you have in your questions.
The article goes on to provide really good help with the conversation as it develops - it is well worth reading through next time you have to see your doctor!
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New Diagnostics Tool
It is extremely important that we are able to diagnose someone with aspergillosis as quickly as possible, as the earlier treatment is begun, the better the outcome. People who have chronic forms of aspergillosis - such as Chronic Pulmonary Aspergillosis (CPA), Allergic Bronchopulmonary Aspergillosis (ABPA) and likely many cases of Severe Asthma with Fungal Sensitisation (SAFS) - are typically very difficult to diagnose.
Take a look around a mycology laboratory!
This video was produced for a schools event, to give pupils a brief look at what a mycology laboratory does. This is the Mycology Reference Centre Manchester, Wythenshawe Hospital, where patient samples are sent for various tests.
WHO WANTS TO LIVE FOREVER? by Elizabeth Hutton
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Good old Freddie Mercury classic - 'hitting the nail on the head' brilliantly! The one sure thing in life is that we're all going to die - we're all headed in the same direction - and yet it's a subject most of us prefer not to think about or discuss. Having faced imminent death ‘head on’ already anyway, I don’t have a problem with this at all – in fact, I’m probably better prepared due to my experience. Nor do many other people, judging by the many advertisements for pre-paid funeral plans – it seems that many of us are now less ‘squeamish’ and being more practical. Surely, it must be quite re-assuring to know that everything is in place and there is little for others to worry about, particularly financially.
Unfortunately, since my various diagnoses some eighteen months ago, this has been more to the forefront of my thoughts. As I live alone, the main concern for me is that when it does happen, someone else will be left with the planning and arrangements. Also, a consideration is that indications show that costs of funerals continue to rise at an alarming rate.
So, in an attempt to alleviate the above, I decided to start the process of planning for the eventuality - starting with comparing costs of pre-paid funeral plans on line, and received several brochures. I did let two of those closest to me know that I would pass on details to them, once decisions had been taken (knowing that there would be quite a few decisions to be made!). What’s all this about - ‘quality’ and ‘high quality’ coffins? What does it matter? When you’re gone, you’re gone – and they’re only either placed in the ground, or incinerated. Not a bad business to be in, when you think about it – there’s always going to be the demand for services.
Whilst considering these, I recalled that when I was given the worst diagnosis, I had given serious consideration to a one-way ticket to Switzerland and now re-considered this, as there doesn't appear to be a definite prognosis for ABPA. At best, I guess I may just go on for X number of years as I am now - the worst scenario could be that it progresses to the chronic form - and then die! The worry being the in-between chronic stage and dying - and the knowledge that many of the drugs do become fungal-resistant. Happy days - not! I then made some enquiries of Dignitas - which turns out to be another expensive 'do', but it’s important to know that there is this option if necessary.
I briefly outlined my dilemma to my close friend and colleague, Martin, saying - "What if I purchase a pre-paid Funeral Plan, only later to decide on an assisted suicide?" He promptly replied that I could always raffle the Funeral Plan - it may cover the cost of the trip to Switzerland!
Decisions, decisions. I must say that the whole process (whichever way) does seem a bit of a swindle! Then I read an article on the 'Moneywise' website entitled 'Death - the final rip-off' - confirming my thoughts. Interestingly, it mentions donating one's body to research, therefore no costs involved – www.hta.gov.uk - (I have already made arrangements for my organs to be donated) - more 'food for thought'! It also makes mention of a chap who 'haggled' with the funeral directors over funerals for relatives and managed to achieve a 10% reduction - twice. This I really like - it appeals to my love of bargaining and underlines to me that there must be a huge profit-margin here. I don’t suppose many people would have thought of bargaining, as the funeral providers will be used to those who are perhaps in a fragile state, in shock, mourning, and with a massive ‘to do’ list, so are usually very compliant.
According to ‘Funeralzone’:
“The cost of a funeral varies depending on your location, the circumstance of the death and your requirements for the funeral. The average cost of a burial funeral is £4,136 and the average cost of a cremation funeral is £3,214 (according to the Royal London National Funeral Cost Index Report 2016). This will, of course, vary depending on specific choices and circumstances.
These costs can be separated into three categories:
- Funeral director fees
- Third-party costs paid by the funeral director (for example the costs of cremation or burial, gravesites, transport, venue booking, ceremony costs)
- Local authority fees”
I do like to keep a sense of perspective and to see things from all angles, so another alternative - I'd be quite happy (!) to be buried at the bottom of my beloved garden, but this may be just a tad off-putting to future prospective buyers! Who knows - I may be spending my days abroad when the time comes, which could then scupper all plans?!
‘Oops, I did it again’ – sorry, Britney – couldn’t resist!
Ultimately for me, the strongest contender seems to be to make a ‘Living Will’ (see Living Will – Patients Association) for my ‘nearest and dearest’ outlining my wishes regarding such issues as resuscitation or otherwise, and when to ‘accidentally’ trip over and un-plug life-support. Then, put aside an amount of money to cover costs of an inexpensive (but pretty!) funeral, less, at least 10% (!) and a much more generous amount for a good old 'knees up' / Wake. Priorities are so important, don't you think?
So, if I can set my mind to planning this, I can then 'put it away' and get on with the far more important matter of living! The only other major item is my Will, followed by minimizing my wardrobe and sorting my knicker-drawer – then I’m good to go!
‘Always look on the bright side of life … diddum, diddum, diddum, diddum, diddum …!’
One other concern is – God forbid – that I should at some point have to move to a care home. Apart from being at the mercy of others, there is also the huge financial implication. There is the option of setting up a Trust, in order to avoid ones’ home being sold to pay for fees, but Saga warns “Beware of any company or scheme that claims to protect your home or assets from being sold if you go into care by placing them in trust. Local authorities are increasingly wise to these type of schemes, with teams in place to ensure residents are not using them to get out of paying rising care costs.”
I’d be very interested hear if anyone has any suggestions or advice (obviously, apart from ensuring, insofar as possible) that savings/assets will cover this? How anyone can ensure they have sufficient funds to plan for this is beyond me – if only we knew how long we have left, it would certainly simplify the problems! Who can afford to live forever?!
Currently, the only way for me (as with most everybody else) is to hope against hope that I’ll be able to continue happily in my own home, ‘With a little help from my friends’ - right to the end.
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‘I’M STILL STANDING – (ME ‘N ELTON!) by Elizabeth Hutton
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… And Breathing! Reasons to be cheerful – thanks to Derby Royal Hospital I finally was given the correct diagnosis and, importantly, excellent treatment from the team of Consultants in the Respiratory Clinic, which means my breathing is the best it’s ever been! After All This Time!
Problem is – everything else seems to be going wrong! As the wonderful team at Royal Derby had successfully removed the fungal ball (covering about a third of my lung) and ‘dampened down’ my allergic reaction to spores (no more plugs blocking my bronchi), I fully expected to be back to ‘my normal’. Didn’t happen – so, considered that as my condition had become critical, it may take quite some time for recovery and exercised patience – but it’s now over twelve months since commencement of treatment.
The fatigue continues, despite balancing keeping myself active with pacing myself, (light) exercise, healthy diet, and intake of numerous vitamins. I was told at my last appointment that this was not likely to be a symptom (or result) of ABPA but, to my mind, it seems too coincidental. Having now read up on this, it does appear to be a symptom that many with the condition suffer from – and the Consultants I am seeing are respiratory experts, so this may be outside of their ‘realm’. Mainly in order to discount this being as a result of another condition, I requested a thyroid test, along with my usual blood tests and the results have been returned satisfactory. So, I guess I shall have to continue to pace myself and accept the changes. As I can no longer take care of my fruit shrubs and need to reduce garden maintenance, I’ve now had them removed and the bottom of the garden gravelled.
Asthma or Aspergillosis?
Another reason to be cheerful is my otherwise healthy genes, which have given me the strength to endure all the years without diagnosis / treatment! Bottom line is, though, if you can’t breathe, little else matters.
Since my teens, I have been told that I have asthma – and this was a question put to me when ABPA was suspected – saying there is a link between diagnosed asthma sufferers and aspergillosis. Many of the articles I have read support this view. However, I’ve always doubted that I ever had asthma (the ‘symptoms’ were sporadic and the prescribed inhalers didn’t do much for me) – and now I am convinced of it! There was never any diagnostic test to prove the case, merely a GP saying that my breathing difficulties were caused by asthma. I do vaguely remember blowing into a bit of plastic tube, which supposedly measures strength of breath, but I don’t think this could really be called an effective diagnostic tool!
This leads me to believe that the label of ‘asthma’ may be given too freely and that condition, therefore, over-diagnosed - and that had I (and possibly many others) had the opportunity of further, early, investigation, the true diagnosis may have been reached many years before the condition became critical. So, my laypersons’ advice to those who consider themselves to possibly be at risk of a condition other than asthma, is to seek further investigation. The earlier a correct diagnosis is made, the less risk of serious and potentially fatal damage to the lungs.
My Love / Hate Relationship with Steroids:
I absolutely love steroids – I felt almost immediate positive results and, after six months high dosage, the fungal ball in my lungs had disappeared (leaving only minimal scarring) – and almost all other symptoms disappeared. What’s not to love? ….
Of course, I read all the possible side-effects, which included risk of glaucoma and cataracts, but had no choice in taking the medication. For many years my eyesight has remained unchanged. However, last week I had my annual check and, although my eyesight remains unchanged – yes, you’ve guessed it – I have the start of cataracts on both eyes and first indications of glaucoma (both conditions shown on the scan)! On my optician’s advice (due to my family history of glaucoma, use of steroids and scan indications), I now pay just £6.00 per month for any number of scans throughout the year (should I notice any difference or have concerns), in order to monitor the situation. At this stage, no surgery or medication is required. Just have to ‘keep an eye on it’!
Feeling like a true survivor ……
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