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Call to Action for the Australian CF Community

Please support the Australian CF Community by writing to our Health Minister to ask for access to the lifesaving medications Kalydeco and Orkambi via the PBS using the guidelines below. This letter has been copied from an email distributed to the Victorian CF Community from the CEO of CF Victoria. Your letter will help save lives.

AN OPEN LETTER TO THE CYSTIC FIBROSIS VICTORIA COMMUNITY FROM CEO KARIN KNOESTER

(This letter has been copied from an email received from the CEO of CF Victoria)

Dear Friends Rest assured that we are as equally devastated by last Friday’s PBAC announcement on Kalydeco and Orkambi, as you are. Right now it is important that we stand together as a community and push for these decisions to change. So much evidence exists supporting the effectiveness of these medications and so many people are dependent on their provision. We need to know why PBAC made this judgement call. I am asking you to contact the Hon Sussan Ley MP, Minister for Health and Aged Care. Tell her why the decision to defer Kalydeco and reject Orkambi is flawed and why access to these drugs is needed immediately. I invite you to include the following statements in your correspondence: Orkambi

  1. Clinical trials here in Australia and overseas have proven Orkambi’s clinical effectiveness and safety. The drug was seen to not only improve health outcomes, but also quality of life, it reduced exacerbations and subsequent hospital admissions.
  2. We must move swiftly as every day that a person is denied access to Orkambi is another day of potential life limiting lung damage.
  3. There are 1,000+ Australians with cystic fibrosis (CF) over the age of 12 years waiting for Orkambi.

Kalydeco

  1. Kalydeco, Vertex’s first modulator drug, is proven to be a ‘game changer’ for people with the G551D cystic fibrosis gene change.
  2. The unique mechanism of action of Kalydeco revolutionised CF treatment, as it became the first to address the underlying causes of the disease.
  3. The PBAC deferred the decision on whether Kalydeco would be available for approximately 30 young Australians aged 2-5 years with the G551D gene change.  These children are depending on access to this life saving medication.  Without it they risk further lung damage.

General

  1.  In Australia we pride ourselves on a fair and supportive health system. People with CF have now found themselves caught in the middle of a battle between the Government and Vertex over price. Things need to change.
  2. The CF community should not be penalised because of a breakdown in a commercial agreement.

The Minister can be contacted through the following means: The Hon Sussan Ley MP P.O. Box 6022 CANBERRA  2600 Phone: (02) 6277 7220 Email: minister.ley@health.gov.au  We will not stop advocating and seeking answers until every person with CF has access to these life changing drugs.

Karin Knoester CEO

Cystic Fibrosis Victoria

Health Alert!

For anyone who has been experiencing respiratory symptoms in the past week, just be aware that the recent “thunderstorm asthma” event in Victoria has been triggering not only asthma attacks but other symptoms as well. I’ve been battling a virus for the past 6 weeks and about a week ago started to present with whooping cough like symptoms and excessive production of fluid in the lungs. I initially didn’t make the connection because I wasn’t experiencing asthma attacks. Thankfully I was rescued by my GP who made the connection.. Thoughts and prayers go out to the people who have lost their lives as a result of this freak event and their families..

Take home message: Trust your gut instinct. I knew something wasn’t right with my health and I needed to get checked out by my GP.. So thankful I didn’t ignore the warning signs and assume my symptoms were just a result of the virus or my lung condition. My outcome could’ve otherwise been very different.

Keep on Researching

Keep on researching about your illness, because you never know where that next pearl of hope is going to come from that’s going to take you forward on your journey. Do keep in mind that not all research is credible. For this reason I’ve come up with a bit of a checklist to help sort the good from the bad.

Is the author of the article an authority and does it list the qualifications/credentials of the author?

Is there evidence of referencing?

If it’s a piece of research, has it been peer reviewed?

When was it published? If it isn’t recent is it still relevant?

Is the article/research written objectively? Some articles can appear biased.

Can the author’s claims be backed up?

Does the information support or relate to your current understanding of the condition?

I hope this helps. Oh and another tip for finding those nuggets of health info is to make contact with other people with your condition e.g. on forums & online support groups. While everyone is different. and what works for one may not work for another, you never know what you may stumble across in making contact with others with a shared experience.

 

 

A Recipe for Health

I have a bit of a checklist I tick off each day for my health.

R = Real Food – Aim for at least 80% of my daily diet to be unprocessed, ideally more. I’m a work in progress.  I try to think and eat outside the box!

E – Exercise daily – 30 minutes at least  I’ve got the cardio sorted but am falling short with my stretching. Might need to try something new ….maybe yoga!

S – Sleep well – 8-9 hours of sleep. I ideally need 9 to function well

U – UV/Vitamin D – 10-15 minutes of morning sunlight with as many body surfaces exposed to the sun as possible – usually arms, legs and face! if a bit of sun exposure is not possible I take a Vitamin D supplement.

L – Laughter – As often as possible!!! It’s the best medicine …apart from chocolate in my opinion

T – Time out – Aim for 30 minutes, usually to meditate, read or watch my guinea pigs eating non stop!

S – Stress Less – If I’ve had a bit of a stressful busy day I make a conscious effort to de-stress by taking a bath, meditating, listening to music or one of my favourites….. doing TRE – Trauma Release

Exercise!

© Jane O’Brien 2016   – Recipe for Health – RESULTS

So what do you do to manage/improve  your health?

Dealing with Uncertainty

One of the things I’ve had to come to terms with as part of my journey with illness is the heightened phases of uncertainty. I can feel well when I wake up in the morning and by the afternoon be flat on my back. It makes planning ahead a real challenge, but I try not to let it hold me back. I book in appointments and social outings and hope I’ll be able to make them. If I do it’s a real sense of achievement. Psychologically it can be challenging dealing with a heightened sense of uncertainty. I’ve learnt if I focus as much as I can “in the moment” I cope much better. It’s when I start to look ahead and think “what if” or reflect back to what’s happened in the past that I start to feel a bit stressed. So when I find my mind wandering to the past or the future I make a conscious effort to remind my self to focus on the moment I’m in. It helps keep me calm and centred. Another other thing I do when I’m feeling like things are a bit out of control is to make more of an effort than usual to ensure I build some relaxing activities into my day. It may just be something as simple as reading a book in the sun on my deck, anything to help distract me from my health concerns. Also given that I’m not usually one to be short of a word, a good chat to offload about how I’m feeling often works wonders too. Thankfully I have a bunch of people in my world who are more than willing to listen when things are a bit tough. Nothing like a good chat over a cuppa with someone who lifts you up rather than drags you down. So what do you do to cope with uncertain times  i.e. when you feel like your health is a bit out of control?

Welcome

Hi everyone, thanks so much for visiting my blog. I’m looking forward to sharing some of the  Light Bulb Moments I’ve had and continue to have about health along this journey that’s life. I hope whether you’re in good health or not so good health that you find these tips in some way relevant and useful. Given that I’m a work in progress, and feel like I’m only scratching the surface of health knowledge, I look forward to hearing your thoughts and ideas on what helps you chug along with your health. So please feel free to join in the conversation.

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Embrace the simple things & stay well!    recipe-for-health

Cheers!

Jane

My Story

I was diagnosed in 2009 at the age of 38 with a chronic lung disease called Bronchiectasis.  At the time of diagnosis my doctor asked many questions including”is there any family history of Cystic Fibrosis?” To my knowledge there wasn’t so I wasn’t tested for it and the cause of my lung disease remained unknown. My doctor was shocked at how diseased my lungs were for someone who had only been presenting with symptoms for eight months. Over the next four years my condition deteriorated progressively  due to frequent episodes of infection and lung bleeding to the point where I was referred to another respiratory doctor for a second opinion.  It was decided I should undergo a Bronchial Artery Embolisation to seal off some abnormal blood vessels in my right lung. After the procedure the doctor came in to see me. He said he wasn’t sure  how successful the surgery would be because he usually only sees these abnormal blood vessels in patients with  Cystic Fibrosis. After he left my room my Mum asked me “I wonder if it’s relevant that I have a cousin who had 3 daughters with Cystic Fibrosis?” Not wanting to alarm her I said nothing, but immediately knew this information might be relevant. This cousin my Mum had spoken of over the years I thought were friends of the family, not relatives. When I was discharged from hospital I immediately rang my treating physiotherapist at the time who then consulted my doctor. It was decided I should be tested for Cystic Fibrosis. My sweat test results were inconclusive, and the genetic tests revealed I had one gene mutation for Cystic Fibrosis which in theory should make me a carrier. I was called in for an appointment to see my doctor who after assessing the results said he thought I have Cystic Fibrosis, based on my clinical features. There are approximately nineteen hundred gene mutations that are known to exist but can’t be tested for yet. It’s thought my other gene mutation is one of those. I may not ever find out what the other gene mutation is but I have a clinical diagnosis. Cystic Fibrosis is typically diagnosed at birth, but there are more people being diagnosed later in life in similar scenarios to me. I consider myself one of the lucky ones to have lived a reasonably healthy life up until my twenties. When I was born I spent the first six weeks of my life in the Royal Children’s Hospital, and apart from chronic bronchitis at the age of five, I lived quite well as I mentioned until my mid twenties when I started to have frequent chest infections.  So how did I manage to escape an earlier diagnosis?. I’m told that the missing gene mutation must be a milder one and a likely reason why I have significant lung damage is because it’s possible to be asymptomatic and still experience disease progression due to inflammation in the lungs. I’ve managed to condense quite a lot of drama into the past seven years and while it’s a tough journey my perspective check is all those people with CF who’ve been struggling since birth.

One of my favourite quotes is “You can let illness define you or rise above it and live”……

and I choose to rise above it and live!