Topic

pbs

4 petitions

Update posted 1 year ago

Petition to Greg Hunt MP, The Hon. Greg Hunt MP

Change the PBS criteria to allow all adults who have CP to access Botox injections

Currently, adults who have cerebral palsy and have subsequent spasticity either impacting their lower or upper limbs (as well as other parts of the body) are not eligible to receive PBS subsidized Botox intervention UNLESS they commenced treatment as a paediatric patient (ie. less than the age of 18). For many young adults living with CP, Botox was not available as an intervention to assist in the management of spasticity when they were in the 'paediatric' age range and instead multiple orthopaedic surgeries including muscle and tendon lengthening procedures were undertaken. As a result, many young adults living with CP are missing out on Botox intervention which can provide significant relief from the pain and stiffness experienced due to spasticity. This relief can, in many cases, enhance their function and level of independence. Without access to PBS subsidized Botox intervention, the cost of this treatment can be astronomical. The cost to the patient (without the PBS subsidy) is $1625.94 per vial (100 units) of botox. As an example from my own personal experience below: I am a 32 year old with mild Cerebral Palsy. I live an independent life and live at home with my partner, I drive, I work full-time and am an active contributor to the community. I receive periodic botox injections and regular physiotherapy which assist me to maintain this independence and reduce discomfort from spasticity.  I receive Botox injections approximately every 6 months to assist with managing my Spasticity. Each time my treatment consists of approximately 11 injections (600 units of botox) performed by a Rehabilitation Physician. This would result in an out-of-pocket expense of $9755.64 per treatment; so having this twice per year would result in an out-of-pocket expense of $19, 511.28! That's nearly $20 000 per year that adults who have CP who weren't treated with botox prior to turning 18 would be expected to pay to access this treatment that those who commenced treatment before the age of 18 have access to under the PBS. Thankfully, to date, I personally have not had to pay these astronomical costs for my treatment as I have been fortunate enough to participate in sponsored training clinics where registrars are taught botox assessment and administration techniques by physicians. Unfortunately, this situation is not guaranteed to continue and not all adults who have CP are fortunate enough to be able to access these clinics. This is an extremely inequitable and ultimately discriminatory situation and one that I strongly feel needs to be brought to the attention of the government and quickly changed! Please consider signing this petition to encourage the government to consider altering the PBS eligibility criteria for adults who have CP to be able to receive botox intervention under the PBS to assist with spasticity management regardless of their age or when treatment was commenced! This petition will be sent to The Hon. Greg Hunt MP, newly appointed Federal Minister for Health and Sport for consideration. Thank you for supporting me on this issue. 

Andrew Alchin
828 supporters
Update posted 2 years ago

Petition to Greg Hunt MP, The Hon Greg Hunt MP, The Hon Ken Wyatt AM MP, Hon Dr David Gillespie, MP, Professor Andrew Wilson, Professor Rosalie Viney, Professor Geoff McColl, Cynthia Tan, Elizabeth Remedios, Dennis Bastas, The Hon Jane Prentice MP

Meniere's Disease Medications URGENTLY Needed on the PBS

Over 40,000 Australians with Meniere’s disease need your help. Meniere’s disease has been described “as one of the most debilitating diseases experienced by people who survive any illness”. [1] The symptoms of Meniere’s disease can lead to sudden debilitating attacks, loss of employment, social isolation and loss of confidence and personal capabilities in everyday living activities, yet this life changing balance & hearing disorder receives no attention. FAMILIES ARE IN CRISIS “My sister killed herself because of Meniere's Disease. The attacks were coming with an unrelenting intensity that would last for weeks and months. The side effects of depression and anxiety is under reported and the cost of medicating this disease is ridiculous, particularly for people that simply can't work because they can't leave their bed.” - Leah F, NSW “My Mum suffered from this for her entire adult life. I can remember her losing control on many occasions and falling flat on her face on the floor. As a child it frightened the hell out of me. She couldn't drive, go out alone or do any of the things that most folk take for granted.” - Kim C, Dagun “I'm signing because I use Serc regularly to control my Ménière's disease. I experience debilitating attacks of vertigo that confine me to bed often for more than 24 hours at a time. Serc helps with these symptoms. It is not a nice extra in my life but a necessity as I care for my terminally ill husband. It should be on the PBS so that it can be obtained like any other necessary drug.” - Caroline B, Australia 1 in 600 Australians have Meniere’s disease, this equates to approximately 40,120 Australians (more than double of those with Multiple Sclerosis) but where is the community awareness or government support? “Patients with Ménière’s disease are severely incapacitated by their illness. In acute episodes, Ménière’s disease seems to be one of the most debilitating diseases experienced by people who survive any illness. All instruments seem to indicate that Ménière’s disease is serious in its physical and mental health consequences.” [3] Symptoms include fluctuating low frequency hearing loss, aural fullness, tinnitus, dizziness, vertigo attacks, brain fog, depersonalisation, nystagmus, and frightening drop attacks.  FINANCIAL STRESS FROM EXPENSIVE MEDICATION “I am myself in the process to see if I have Meniere's and have started on medication. As a pensioner I was disappointed that the medication is not on the PPS. In fact, I delayed getting medication due to lack of funds.” - Kaylah H, Australia “I have Menieres and on a small income. Other medications I need to take that are not on PBS in addition to Serc are causing financial and emotional stress, when I can't afford them when I am unwell with Menieres and can't work and subsequently don't get paid. To have Serc on the PBS would relieve a great deal of pressure on me and my family.” - John H, Australia As scary as Meniere’s disease is, what is perhaps more alarming is that there is currently no medication benefit on the PBS for Australian’s struggling with the condition. So in addition to dealing with a debilitating chronic illness and the financial hardship that accompanies it, sufferers must also spend thousands of dollars each year on expensive medication just to maintain some quality-of-life, employment and social interaction. EXPENSIVE MEDICATION NEEDED TO SURVIVE “I can't survive a day without medication but they are just so expensive.” - Hazel S, Australia “I have Ménière's disease and currently spend over $120 a month on medication.” - Lesley C, Quakers Hill “I have Ménière's Disease. Currently I am unable to work, and Serc is currently costing me approx $20 per packet. With the current dosage of Serc I am on, a packet doesn't last a week.” - Christine P, Flowerdale There are three medications that Meniere sufferers desperately need to manage their symptoms, but they are outrageously expensive, so many sufferers are going without their prescribed medication because they simple cannot afford it. $$$$$ Betahistine, ondansetron and valacyclovir are clinically effective, have proven efficacy, and are safe and cost-effective compared with other treatments available. MENIERE’S IS A LIFE LONG STRUGGLE “I have suffered with Menieres for over 30 years. Severe loss of hearing, nausea and frightening drop attacks. Medication has been essential. Medication is expensive." - Irene K, Ararat AUSTRALIANS CALL ON THE FEDERAL GOVERNMENT FOR SUPPORT “I work in the audiology industry and there is not enough support for this disease.” - Kirsty R, Australia “I have a good friend who suffers with this and struggles to afford the medication. It’s not fair! and it is not right!” - Tara-Louise B, Australia We call on your support to URGENTLY add these medications to the PBS for the benefit of people with Meniere’s disease, to alleviate the financial burden and improve their quality-of-life. Show you care. Please SIGN & SHARE this petition. Thank you for your support. For more in depth information on this petition, or to learn more about Meniere's disease and other chronic balance disorders, go to Whirled Foundation. You can help the advocacy work of Whirled Foundation by DONATING HERE. Source: [1] 2001 QWB Study ‐ "Impact of Ménière's Disease on Quality of Life" by Anderson, John P.; Harris, Jeffrey P.

Beatrice Tarnawski
5,492 supporters