cystic fibrosis

3 petitions

Update posted 16 hours ago

Petition to Hon. Dan Tehan MP, Greg Hunt, Greg Hunt MP, Queensland Health

Fix the issues with accessing the Disability Support Pension

The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship. My name is Jake Bailey. I am 23, I have completed a university degree straight out of high school and after that I begun my hairdressing apprenticeship. I always prided myself on being an outgoing and hard working individual. Last year, however, I was forced into an early forced retirement due to the genetic chronic illness Cystic Fibrosis. Cystic Fibrosis is primarily a lung disease, however, it also affects most of the other major organs in the body. As it stands, Cystic Fibrosis (CF) is the most common genetic life threatening illness in the country, double lung transplants are a common prognosis and those who have CF have a mean life expectancy of 39 years old. As a result of my CF I have a predicted lung capacity of 40% which requires me to perform daily physio and antibiotic therapy. The decreased capacity furthermore limits me to the amount of physical activity that I can do. Further complications from CF has resulted in my pancreas being damaged to a point where I have to consume 30+ tablets a day (pancreatic enzyme replacements) and adhere to a strict diet in order to gain any nutrients out of food. The health regime that I have to follow in order to maintain my health leaves me as a time poor person, with these treatments taking hours out of my day, and weeks out of my year when hospitalization becomes a necessity. Living with these extra responsibilities did make work a more arduous task and it did take a toll on my body with my lung capacity taking a hit of around 15% in the two years where I was working full time and my time spent hospitalized increased. With these statistics in mind under the advisement of the team of medical professionals who look after me at the Prince Charles Hospital Brisbane I was recommended to apply for the DSP in order to prolong my health. At this time, armed with 23 years of medical evidence from a range of professionals across all fields of medicine (Thoracic specialists, Mental health professionals, Dieticians etc.) I applied for the DSP with Centrelink. My claim was left sitting for over 4 months before I was contacted; albeit after I checked up on the process of my claim multiple times, by the department. In this time, my interim payment (newstart allowance) had been cancelled or suspended 4 times, due to a lack of communications between departments because I had exceeded the allotted exemption period for those applying for DSP. In my communications with the department I have been made to feel embarrassed and frustrated over the phone and in person numerous times. From being asked asinine questions such as if my “degenerative lung disease” will improve over the next 24 months and being told that I should work until the point where hospital outweighs all other aspects of my life I became very despondent with the situation at hand. Upon the presentation of my medical history to Centrelink the statistical evidence that I, and my medical team had provided which proves the degradation of my lungs has been continually ignored. Instead a rubric based upon anecdotal evidence is preferred by the assessors with questions regarding my gardening capabilities and whether I can walk home from the shops used to assess my health issues. This is incredibly embarrassing and demeaning as it questions my integrity as a disabled person. To add further salt to the wound all associated issues that come from living with a chronic illness such as the emotional ramifications are ignored and not treated to be part of the holistic wellbeing of a person to the point where I was questioned if my documented mental health issues were real and genuine. Putting already disabled people, people dealing with losing their jobs under this stress and forcing them to justify their illness beyond reasonable measures is masochistic and this has to change. As it stands, I am still in the process of being approved for the DSP and am waiting upon further contact to notify me of my claim. Yes, I have received interim payments, and for this I am thankful, however, the associated costs of living with a chronic illness such as medications, transportation and diet specific foods has left me in an incredibly vulnerable and uncomfortable financial position. When you add to that the emotional stress, and the overarching feeling of being undervalued and dehumanized by a seemingly masochistic system has left me, my family and loved ones in a depressed state. A change has to be made to make these social systems more accessible for all disabled people. I speak from my perspective of having CF, but, I am aware that there are hundreds if not thousands of people in our nation who live with their own afflictions who have been compromised and made to navigate this hard to access system. I urge the Minister for Health The Hon. Greg Hunt and the minister for social services The Hon. Dan Tehan to discus this matter and meet with disabled people; young, old, inherited or accident to gauge how the system makes us feel and live. Please work with us, so we can be proud and active members of our communities.  Thank you for reading.  Regards,  Jake Bailey

Jake Bailey
7,300 supporters
Started 1 year ago

Petition to Malcolm Turnbull, Arthur Sinodinos, Nick Xenophon, Rachel Sanderson, Amanda Rishworth, Mark Butler


#WeNeedOrkambi There are 2,500 Australians effected by Cystic Fibrosis; most life threatening, hereditary illness effecting Australians. 1 in 25 people are carriers - many unknown to this.Every 4 days a baby is born with Cystic Fibrosis.Every 9 days a person with Cystic Fibrosis dies.The average life expectancy is 37 years, most not making it to their 30's due to lung failure.I am 29 years old with a life expectancy of just 37 years of age. That means I have 8 years left to live. I have 2 young children, a husband and a family with so much to live for. Cystic Fibrosis is a hidden disability, slowly killing me on the inside. Orkambi will improve my health in ways I only dream off. To not have Orkambi accessible leads me to a not so long life. Will you be able to explain to my babies why Mummy wasn’t able to have access to a drug, a drug that could have saved her life. Please don’t let that be a conversation that has to happen. Approve Orkambi on the PBS & remove the expiry date for my life. Clinical trials here in Australia and overseas have proved Orkambi’s clinical effectiveness and safety and the drug was seen to not only improve health outcomes but also quality of life. Orkambi, created to mask the F508del gene mutations, improves lung function and reduces exacerbations, hospitalisation and antibiotic use. Trial participants reported improved nutrition and subsequent BMI increases, both of which have the capacity to stave off diabetes.Most importantly the Orkambi trial had a positive effect on the mental health of people with CF. Research shows that overall wellness leads to social inclusion and an increase in employment and education participation. These factors in turn reduce personal and family stress resulting in less depression and anxiety for patients, parents and support networks.In Australia we pride ourselves on a fair and supportive health system and now people with CF find themselves caught in the middle of a battle between the Government and the drug development company Vertex over price. Things need to change. The CF community should not be penalised because of a breakdown in a commercial agreement. We must move swiftly as every day that a person is denied access to Orkambi is another day of potential life limiting lung damage.For more

Emmah Money
3,930 supporters