Thursday, October 2, 2014

Never Stop Fighting!

It's been 30 months since I started my blog. That's almost 1000 days and Kalydeco still isn't subsidized in Australia. That's pretty scary. 

As I've mentioned many times on my blog I've had many up's and downs throughout this campaign. Sometimes I feel strong and other times I feel overwhelmed and exhausted, mainly emotionally but also physically at times. Recently I took a quite step back from media and social media platforms. It all became a bit much to be honest. I took the time to focus on myself again, firstly to get my health back on track and also to realise that I could still be me without being defined by 'Kalydeco' and CF. 

During this time I started to think beyond my own situation. I realised that I had been living in a bit of a 'Kalydeco bubble' and I needed to take the blinkers off. I started thinking about the rest of the CF community and even about other rare disease sufferers in Australia. I started to wonder what other parents and sufferers will do in the future when even more life changing medications are developed. I felt anxious and concerned that they will also have to go through this lengthy and exhausting process. Quickly I started to become acutely aware of many other parents trying desperately to access life changing medication for their children. Upon learning this I came to the conclusion that our country ('the lucky country') is behind the 8 ball…way behind the 8 ball and something needs to change. 

The health system that we currently have is renowned as 'one of the best in the world' yet thousands of rare disease sufferers are unable to access life changing medication due to a system that simply does not prioritise the most vulnerable people in the country. Science, technology and medicine changes, evolves and most importantly improves every year and I believe it is extremely important that our health system also changes and evolves to ensure it is reverent, up to date and best accommodating the majority and minority groups within the population. We are constantly being told to respect and understand the 'processes and procedures' of the system however I think it's time to actually question the 'systems' effectiveness. Personally, I believe our system is OUT OF DATE. I think politicians and other influential individuals associated with PBAC drug listings need to have a long hard think about whether the 'system' is actually serving the people that need it most. It is widely known that specialised medications are astronomically expensive and this problem is only going to get worse. I certainly understand that there must be a system and that everything comes at a price but I believe we need to work together to come up with a better solution, a better system for a better outcome. I don't pretend to have the answers to FIX this current situation/problem however I do believe we have the power to create awareness and consequently generate some form of change. 

And so…after a brief passing moment of quietness I have decided to continue campaigning harder than ever before, but this time on behalf of ALL rare diseases. 

I have teamed up with Rare Voices Australia to produce a photographic project called, 'The Forgotten Ones'. This project focuses on capturing young Australian's that live with a sibling that suffers from a rare disease. 'The Forgotten Ones' project seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering. Rare Voices Australia have connected me with 12 different families within Australia fighting against 12 different rare diseases and I have commenced portrait sessions for the exhibition. 

Our main objectives are to: 

1. Generate greater awareness for rare diseases in Australia

2. Strengthen the common voice of people living with rare diseases 

3. Address rare diseases as a national challenge 

4. Promote rare diseases as a national public health priority 

5. Demonstrate that rare diseases communities extent beyond that of the rare disease patient (i.e siblings and families are also impacted) 

We will be holding the exhibition at Customs House, Sydney on 12th-14th March 2015 with an opening night on the Thursday 12th. 

We aim to target Australian politicians, influential individuals and media as well as the wider community to attend the event. 

I also recently got a phone call from a young guy called Alex Strachan and I could tell straight away he had that burning fire determination that I once had at the beginning of this campaign. He explained to me that he had someone close to him living with CF and whilst that person was not eligible for Kalydeco (due to genotype) he wanted to do something to really make a difference. 

Alex decided that he was going to ride a jet ski from Cronulla to Port Macquarie
to raise awareness for CF and to also raise money to fund an advertising campaign to help get Kalydeco subsidised. I have been so inspired by Alex's determination to make a difference and it has really helped me realise that we are all in this together. 

Head down to Cronulla Beach tomorrow 7am-8.30am to support Alex Strachan embark on his heroic journey!

No comments:

Post a Comment