Petition to Malcolm Turnbull, Hon. Sussan Ley, Prime Minister of Australia Hon Malcolm Turnbull
Keytruda on PBS (Pharmaceutical Benefits Scheme) for Mesothelioma and other rare less common cancers (RLC). Keytruda life saving drug!
Lou Williams Win News TV interview on life saving drug Keytruda. We are campaigning to have Keytruda fast tracked on the PBS for Mesothelioma (Asbestos cancer) and other rare less common cancers (RLC) as it has shown great promise in treating these cancers and need your help to do so. I, Lou Williams, believe those living with Mesothelioma and other RLC should have the option of this drug Keytruda (in discussion with their oncologist) and not have the worry of finding the expensive funds to have the infusion every three weeks. It has shown to kickstart the immune system and in turn fight the cancer cells. It has done this with me - I have peritoneal and pleural mesothelioma and was literally on death's door! Keytruda gave me excellent quality of life for 12 months. I now am able to have a new chemotherapy regime to target tumour activity inside my lungs because my immune system is very strong thanks to having Keytruda for 12 months. I have no pain, do not need any oxygen and have excellent quality of life thanks to Keytruda. If I need further Keytruda I will be able to access it at a later date. Daily I am contacted by others with Mesothelioma wanting to have Keytruda and because of the expense cannot do so. Mesothelioma cancer is brutal, aggressive and very painful, we simply do not have the time to put our life on hold until the Keytruda issue is 'debated'. Please sign and continue to share this petition. Thank you. Currently Keytruda is on PBS for Melanoma cancer only as of Sept 2015). Melanoma patients now pay $6 for infusions of Keytruda while patients who are having Keytruda as a life saving drug pay $5,000 to $10,000 per infusion of Keytruda! Many thanks, Lou Williams - Peritoneal and Pleural Mesothelioma since 2003. Social Media Voice ADFA (Asbestos Diseases Foundation Australia) Australian Director, GBAN (Globan Ban Asbestos Network) https://scontent.xx.fbcdn.net/hphotos-xpl1/v/t1.0-9/11988728_10153138425522896_1093323892630164471_n.jpg?oh=81e9afafc81581390276db7b863bb3f2&oe=5665137E http://www.adelaidenow.com.au/lifestyle/health/tanya-dusen-on-being-diagnosed-with-mesothelioma/story-fni0diad-1227515090599 (Read Tanya's story by clicking the above link. Tanya is currently having Keytruda). I am Tanya, a 42-year-old mother of two from Bathurst, New South Wales. I was diagnosed with mesothelioma in October 2012, also known as the “asbestos cancer”. I want to ensure I am here for them now and well into the future. I know with the right treatment there is hope. Hope that I may be able to continue to breathe and take in each day and all life has to offer. Unfortunately, this treatment is not accessible to the average person, because the system here in Australia continues to discriminate. With no government funding for my treatment, I must rely on the charity of others. (Unfortunately Tanya passed away 23 September 2015, she campaigned for funds to have Keytruda and unfortunately became too ill to be given Keytruda at such a late stage in her illness).
Petition to Malcolm Turnbull, The Hon. Sussan Ley MP, Sussan Ley, Malcolm Turnbull
Malcolm Turnbull and Sussan Ley: Don't let me and other rare cancer sufferers die waiting for life-saving drugs
Getting sick wasn’t the plan. I’d just got married and now I’m 26 and battling an aggressive rare blood cancer. I’d been told the only treatment that’ll save my life is unavailable to me - despite being listed on the PBS for other Australian cancer patients. I’m being kept alive by a drug called Crizotinib - but it costs an impossible $7,500 per month. But the hardest thing to stomach is that I'd only be charged $37.70 if I didn’t have my particular “rare” type of cancer. I’m worried - the tumours have crept back 4 times in 18 months, each more threatening than the last. I’m terrified for the future - Crizotinib’s the only drug that’s started to help but the crowd funding I’ve relied on from Rare Cancers Australia is about to run out. I don't understand how two cancer sufferers could be prescribed the same miracle treatment - but because mine is "rare" I'm punished. It's just so cruel - my husband and I were meant to be starting an adventure together, now I'm just battling month by month to be here. Please, Sussan Ley, there are 42,000 Australians diagnosed with rare cancer every year. We are asking you to end the inequality of access to PBS lifesaving treatments for rare cancer patients so that the many others like me can have a shot at getting better. Thank you Jess Pereira PS – to find out more on how you can help me afford my life saving treatment each month please click here.
Petition to Australian Government, Cystic Fibrosis Australia, Vertex Pharmaceuticals, Bill Shorten
Help make Orkambi accessible on the PBS in Australia!
The government and Vertex were unable to reach an agreement yesterday, meaning that Orkambi has not been approved for the PBS in Australia. Cystic Fibrosis is the most common chronic illness in Australian children. Orkambi is providing CF sufferers with an opportunity for an improved quality of life and normalises some lung functions. Without the PBS approval, this drug will not be accessible for the majority of Australians as it is too expensive. Vertex needs to understand the impact this drug would have on Cystic Fibrosis sufferers and just how devastating this news has been on not only people with CF, but families, friends, loved ones and supporters. Something needs to change!
Petition to Greg O'toole, Alex Best, The Hon. Greg Hunt, Sussan Ley MP, Professor Andrew Wilson
Make Soliris (Eculizumab) Available for Dialysis Patients with aHUS in Australia.
Those on dialysis with aHUS in Australia are in desperate need of your help and you can make a difference by signing this petition! Atypical hemolytic-uremic syndrome (aHUS) is an ultra-rare life-threatening blood disease that can damage major organs like the kidneys, heart, brain, and can even cause death. Soliris (eculizumab) is the only approved drug that can save the lives of those with aHUS. It is saving lives in the US, Spain, France, England, Germany, Russia, Argentina, Italy, and other countries. On 12/1/2014 the Australian government made the decision to fund Soliris for a small number of aHUS patients who met “defined clinical criteria”. This was great news for those who were new patients with active aHUS. But those who had already lost their kidneys due to their aHUS, and were on dialysis in need of a kidney transplant, have been denied funding. Without access to Soliris, a transplanted kidney would suffer the same aHUS attack as their native kidneys. A meeting was held in March 2016 by the PBAC to discuss funding Soliris for those patients needing a kidney transplant but the PBAC decided against it leaving these patients a life tied to the dialysis machine. Please sign this petition telling Sussan Ley MP, Minister of Health in Australia, and Professor Andrew Wilson, Chair of the PBAC, that they should immediately provide Soliris to those patients in Australia with aHUS who are on dialysis and in need of a kidney transplant. These dialysis patients just want their lives back and you can help them.
Petition to Catherine King, PBAC Secretariat, NDSS, Sussan Ley, The Hon. Sussan Ley MP, Catherine King
Sussan Ley: MAKE LIFE SAVING TECHNOLOGY AFFORDABLE TO TYPE 1 DIABETICS BY INCLUDING CONTINUOUS GLUCOSE MONITOR (CGM) ON THE NDSS and PBS
Type one diabetes is not a lifestyle choice. You can't get it from eating too much sugar. It is an autoimmune disorder, caused when the body's own immune system attacks the pancreas, rendering it permanently unable to produce insulin. The above picture is of our 6 year old daughter, Violet- a newly diagnosed Type 1 Diabetic. The is no cure. 80% of those diagnosed have no family history. Most are young children. It is a life sentence of endless needles, finger pricks and carb counting. Management of type one is intense, round the clock and vitally important. Blood sugar that is too low will cause disorientation, loss of consciousness, coma and, if unrecognised or untreated- death. Low blood sugar levels whilst sleeping are particularly dangerous and can also be fatal.Blood sugar that is too high has an immediate threat of DKA (blood that is too acidic) which is also life threatening. It is a fine line and a balancing act that diabetics walk every day to try to maintain normal blood sugar levels. For you and I, that is between 4-6 mmol/l. A diabetic can sway from 2-22mmol/l in a day, even when they actively manage their diabetes to the best of their ability. The long term effects of poorly managed levels are frightening and costly to the community- kidney failure, loss of extremities, eye problems, damage to blood vessels, and damage to just about every organ in the body. Even young type one diabetics without long term complications often require hospitalisation for common gastro and flu, also at great cost to the tax payer. In addition to illness, blood sugar levels are effected by exercise, hormones and even emotion. To say that blood sugar levels are unpredictable is a significant understatement. To better manage their diabetes, type one patients need comprehensive information about the way their body's blood glucose levels trend. The current recommendation (that is supported and funded by the Australian healthcare system) is for type one diabetics to check their blood sugar levels by conducting approximately 10 finger pricks a day (upon waking, before every snack or meal, before bed and at 2am). But this only provides 10 small snapshots, and does not allow the identification of blood sugar level trends. Continuous Glucose monitoring (CGM) is the perfect solution to many complications faced daily by type one diabetics. CGM is conducted by the wearing of a sensor (such as a Dexcom) that checks the blood sugar level every 5 minutes, 24 hours a day. It allows for trend identification, prevention of high and low blood sugar events, and is the best way to prevent hospitalisation for common illnesses, as it allows for better management and control at home. Better day to day management is the best prevention for long term complications. It also allows type one diabetics (and their families) to sleep at night, knowing they will be alerted by their CGM if their blood sugar is dangerously low - thus saving lives! The technology for CGM is available in Australia - for a price. Unfortunately, the Australian government does not support this technology, calling it a ' lifestyle choice', and it is not covered by the NDSS/ PBS or private health insurance. The out of pocket costs are prohibitive to Australian families (we pay approximately $108 per week for CGM, in addition to the other costs of diabetes management- insulin, consumables, insulin pumps, blood glucose meters, etc). Inclusion of CGM into the NDSS/ PBS will initially have a cost to the tax payer, yes. But the savings in avoided hospital stays and long term complications will be significant. Diabetics only make up 3% of the population, and type one make up 10% of these but treatment costs for long term complications are staggering- between $4500 and $9000+ per person per year. In addition to the financial and health implications just described, a diagnosis of type 1 diabetes also has a profound emotional impact on the entire family. As the parent of a newly diagnosed 6 year old child, I know firsthand of the shock, grief, fear and desperation of coming to terms with the diagnosis of a chronic medical condition that has the real possibility of shortening your child's lifespan by decades. CGM also provides type 1 diabetics and their families peace of mind. The ability to know with a glance at the Dexcom that your child is not going dangerously low during gymnastics class, dangerously high due to a failed/missed insulin dose. To know that your child WILL wake up the next morning! Please help support the inclusion of CGM on the NDSS/ PBS by signing this petition.
Petition to The Therapeutic Goods Administration
Petition to stop the Reschedule of Codeine/Ibuprofen medicated products.
We the people of Australia wish to see NO changes made to the existing schedule for Codeine/Ibuprofen medicated products. Any thought of changing this availability to the public of these type of medications for reasons of people abusing this medication is absolutely absurd, when you could be regulating the amount that can be bought of these drugs via real time monitoring in pharmacies instead, and we do not believe that all Australian's should have to be inconvenienced further when we need pain relief! Any change that would make these type of products become a "Prescription Only" product would have a serious impact financially on the Australian people (especially for low income earners who already can't afford to pay to see a doctor for REAL medical issues, and on top of that would cause more burden on the system and doctors with time spent in the GP's office just to get a script for these type of basic pain killers)... So in conclusion; please define the amount you consider to be "Overuse" and then monitor that for any possible overuse via a 'real time' monitoring system instead, and then offer to provide the people who possibly overuse with the help they need to get off the medication if they wish or assist them in seeking alternatives, rather than force the rest of the public (who have done nothing wrong) to have to pay more to get a basic pain killer to treat our illnesses & ailments! Thank you. Yours Faithfully, The Australia People.
Petition to Greg Hunt MP, The Hon. Greg Hunt, MP, The Hon. Malcolm Turnbull, MP
HELP GIVE SUFFERERS OF ASBESTOS CANCER & OTHER RARE DISEASES HOPE & A CHANCE TO SURVIVE!
Australian loved ones with asbestos cancer and other rare diseases are dying, without being given the chance of survival or hope, being offered to sufferers of more common diseases! This is not only unjust – it is un-Australian! We need your support! The Bernie Banton Foundation is lobbying the Australian Government, via the Health Minister, the Hon. Greg hunt, to fund trials of drugs with the potential to treat rare diseases, and to reform the Pharmaceutical Benefits Scheme (PBS) application requirements that currently make it impractical for pharmaceutical companies to apply to have valid drugs listed on the PBS. In Australia, drug trials for treating many rare diseases are almost non-existent, as drug companies find it is not financially viable to conduct trials, due to the relative small number of sufferers compared to more common diseases, such as melanoma. Not only are trials an important part of helping find cures, and are necessary to obtain data to build a case to justify a drug being listed on the PBS, importantly, they also give sufferers hope - where often none exists! The Government needs to step up and fund treatment trials for asbestos cancers and other rare and less common diseases! Drugs not listed on the PBS for treating asbestos cancer and other rare diseases are prohibitively priced, this often prevents desperate sufferers with no other treatment options from accessing them! A good example of the unfairness of the system is where a drug; that has demonstrated benefits, in extending and giving better quality of life, to some sufferers of the rare terminal asbestos cancer, mesothelioma; has been listed on the PBS for treating melanoma - which we think is fabulous! This means melanoma sufferers pay only up to $38 per treatment, whilst mesothelioma and other rare cancer sufferers are paying between $5,000 and $10,000 per treatment – for the same drug! What’s important to understand is; pharmaceutical companies are often not even attempting to apply to list drugs, with promise to treat rare diseases, onto the PBS, as the application requirements are too demanding and can’t be met in a practical time frame, due to the small number of sufferers involved and the lack of trial data. The current PBS application requirements disadvantage sufferers of rare diseases – it must be overhauled! Industry based discussion papers have made a convincing case on how the PBS application requirements could be changed to allow valid drug applications to be fast tracked onto the PBS, without losing the integrity of the system. All that is needed is for the government to see the need for change and the will to do so! Please sign and share – you never know who could be a sufferer of a rare disease next – it could be you! Karen Banton - CEO Rod Smith Awareness and Support Co-ordinator Bernie Banton Foundation