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Petition In Depth: Meniere’s Disease Medications URGENTLY Needed on the PBS

This post is an in depth look at the Meniere’s PBS petition for Serc, Zofran & Valtrex.

Want just the basics? Read, SIGN & SHARE the petition HERE.

Meniere’s Disease Medications URGENTLY Needed on the PBS

 

 

 

 

 

 

 

 

 

 

DEPRESSION & ANXIETY

“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

“I grieve for my brother’s mental stability if he doesn’t get affordable effective treatment for his MD. The lack of affordable medication support sees him suffer even more from depression. Please help to give his life back to him.” – Glenny P, Brisbane

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”.

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. [1]

 

 

 

 

 

 

 

 

 

FAMILIES IN CRISIS

“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

“I too suffer with Ménière’s, and have not been able to drive, work or even go out of the house on my own for over 1 year. I am on numerous medications and feel very lucky that our Welsh Assembly government provide us living in Wales with free prescriptions.” – Stephen C, UK

1 in 600 Australians have Meniere’s disease [2], 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.

 

 

 

 

 

 

 

 

 

Ready to support the cause? Read, SIGN & SHARE the petition HERE. Not convinced? Keep reading.

FINANCIAL STRESS FROM EXPENSIVE MEDICATION

“As a sufferer of Ménière’s Disease, it would be an enormous help to have these necessary meds go on the PBS. Serc is the mainstay for so many of us and becomes a financial drain. Stemetil is used even though the side effects can be serious as the safer Ondansetron is too expensive. The antiviral med is rarely offered as an option due to expense. An invisible disease that leaves people isolated and miserable, having equal access to these meds would improve quality of life.” – Gina W, Australia

“This is a subject that directly affects me… This medication is expensive but without it I have very little quality of life so I am forced to pay … It has given me the ability to manage my disease with some semblance of normality and without it I am unable to function. It is a necessity but it does strain our household budget. I agree with the other comments invisible disease aren’t imaginary – just because it is not always obvious to others doesn’t mean we aren’t suffering and struggling every day for the rest of our lives.” – Zoe C, Australia

“Nobody should have to suffer this disease and the pain of expensive medications, just to function in life.” – Jean P, Australia

“Because the medications are ruthlessly expensive and for the people who need it are often totally disabled by Menieres without it but can’t work due to the symptoms so then can’t afford the medication.” – Nicolle S, Wayville

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.

There are three medications that we call on the federal government to urgently add to the PBS for the benefit of people with Meniere’s disease. Betahistine, ondansetron and valacyclovir are clinically effective, have proven efficacy, and are safe and cost-effective compared with other treatments available.

BETAHISTINE (Brand name: Serc – owned by BGP Products Pty Ltd., trading as Mylan EPD)

Betahistine was developed in the 1960’s specifically for the treatment of Meniere’s Syndrome. The Therapeutic Goods Administration (TGA) approves the distribution of betahistine in Australia, “for the treatment of Meniere’s Syndrome as defined by the following core symptoms: Vertigo (with nausea and vomiting); hearing loss (hardness of hearing), and tinnitus.”[4a] Why then, after fifty years since its development, has the PBS not approved betahistine for the treatment of Meniere’s disease?

In study after study, Betahistine has been shown to be significantly effective in reducing the symptoms of Meniere’s disease. Studies have found the following:

  • “Oralbetahistine was significantly effective in preventing/reversing hearing deterioration in patients with Ménière’s disease.” [4b]
  • “The long-term management of Ménière’s disease also involves lifestyle changes (low salt diet), medications (betahistine, steroids)…” [5]
  • “This leaves betahistine(Betaserc) as the only drug for potential prevention of the incapacitating attacks of dizziness, tinnitus and hearing loss.” [6]
  • “…it was shown thatbetahistine increases cochlear blood flow.” [7]
  • MD subjects with and without migraine demonstrated a decrease in both vertigo spells and migrainous attacks during combined therapy…” (betahistinecombined with cinnarizine) [8]
  • “Preliminary results demonstrate that high-dosage ofbetahistine achieved similar outcomes as IT dexamethasone in the control of vertigo and hearing preservation.” [9]
  • “Betahistine… caused a significant increase in cochlear blood flow in comparison to placebo.” [10]
  • “In Menière’s disease, a long-term high-dose treatment with betahistine-dihydrochloride (at least 48 mg three times daily) had a significant effect on the frequency of the attacks.” [11]
  • “Our meta-analysis supports the therapeutic benefit ofbetahistine on vertiginous symptoms in both Ménière’s disease and vestibular vertigo.” [12]

 

 

 

 

 

 

 

MEDICATION NEEDED TO SURVIVE

“I can’t survive a day without medication but they are just so expensive.” – Hazel S, Australia

“Because without this medication my life would be useless.” – John W, Australia

“I have severe bilateral Menieres. I could no longer work due to illness. The price of medication on limited money is nearly unmanageable.” – Melanie E, Australia

“I have Meniere’s Disease. For many people with this condition, these medications make an enormous difference – the choice between a full and productive life and disabling misery.” – Cate V, Sydney

ONDANSETRON (Brand name: Zofran – owned by Aspen Pharmacare Australia Pty Ltd)

Currently the antiemetic most prescribed by GP’s and ENT’s to treat nausea caused by Meniere’s disease is Prochlorperazine (aka Stemetil & Stemzine). However, it is well known that Prochlorperazine can cause ‘drug-induced parkinsonism’ (i.e symptoms of Parkinson’s disease including tremors and facial paralysis). By comparison ondansetron is considered the gold standard in treating nausea and vomiting. It is outrageous that Prochlorperazine is offered to Meniere’s disease patients when a safer alternative is available.

Ondansetron was developed in the 1980’s and trialled on patients receiving cytotoxic drugs (chemotherapy) &/or radiotherapy. The PBS committee will likely argue that ondansetron cannot be approved for antiemetic use in Meniere’s sufferers because it wasn’t originally trialled on nausea and vomiting caused by vestibular dysfunction. We dispute this as evidenced by the below patent info. Furthermore, Meniere’s patients prefer to use ondansetron because it works for them in reducing nausea and preventing vomiting; however at $5+ per wafer, it is a very expensive treatment. Just one wafer a day adds up to $1,825 annually!! It’s unconscionable that Meniere’s sufferers should be so financially burdened, just to avoid emergency room visits and maintain some quality of life.

But perhaps most compelling is that in 2010 the French National Institute of H

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