The Meningitis Centre of Australia is part of the Telethon Kids Institute and is striving to eliminate meningitis in Australia by lobbying for vaccines and educating the community to be aware of the signs and symptoms. The Centre also provides support for families affected by the disease.
Meningitis is an inflammation of the fluid and membranes that cover the brain and spinal cord.
There are three main types of meningitis infection
KNOW THE SYMPTOMS!!!!
In August 2013 Australia became the first country in the world to approve the meningococcal B vaccine for widespread use. However while it is available via prescription through a doctor is is still too expensive for most people. The Meningitis Centre Australia is continuing to lobby the federal government to put it on the National Immunisation Program so that it is FREE for everybody.
Please sign our petition for the Federal Government to allocate funding for this life saving vaccine!
In 2013, 105 people were treated for Meningococcal B in Australia. If not treated promptly it can lead to permanent disability or death in 24 hours. EVERY SECOND COUNTS!
1 Sep 2014
The vaccine for the killer meningococcal B virus has been refused a government subsidy
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1 Sep 2014
Meningococcal B vaccination rejected by PBS but this family will do anything to protect their kids
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11 Aug 2014
Meningococcal claims sixth life in 2014 in New England NSW
read more >
PARENTS will face a $500 bill if they wish to protect their children from the deadly meningococcal B disease after a new vaccine was rejected for subsidy for a second time.
The hard to diagnose meningococcal B infection which starts with symptoms similar to cold and flu and then develops into a deadly rash is one of the greatest fears parents face.
The government’s expert Pharmaceutical Benefits Advisory Committee (PBAC) has rejected a subsidy call and said there were “multiple uncertainties” about the clinical effectiveness of the vaccine.
It questioned how long the vaccine would offer protection before a booster was needed.
The vaccine is extremely costly with a price tag of around $135 million a year and would save just 13 lives over five years.
The PBAC ruled that before it reconsidered its decision “there would have to be a proposal for a price that produces an acceptable incremental cost effectiveness ratio”.
Bruce Langoulant the chairman of The Meningitis Centre Australia said he was very disappointed by the decision.
“The protection that could have been provided is not going to be provided,” he said.
“We are not going to let go of it until it is approved”.
Mr Langoulant’s daughter Ashleigh was struck by pneumococcal disease when she was just six months old and is now aged 25 but she has never walked or talked, is profoundly deaf and intellectually impaired.
Her father has been campaigning for vaccinations against similar diseases ever since.
The cost of caring for Ashleigh and other victims of similar diseases is around $8 million if they live to the age of 65, he said.
He says he hopes the PBAC has taken this into consideration when making its decision on the cost effectiveness of the vaccine.
Nationally there are up to 250 cases of meningococcal B each year and around 10% of patients die and 20% are left with permanent disabilities.
The incidence of meningococcal almost doubles during the winter months.
In the year to March there had been 21 recorded cases of the virus.
A vaccine against the meningococcal C strain is subsidised and available free on the national immunisation program.
Babies require four $125 vaccinations before the age of two to gain full protection from meningococcal B.Former AMA president Dr Steve Hambleton has argued against the vaccine being subsidised unless it becomes much more cost-effective.
“Whenever we bring something into the health system we should justify it on economic grounds,” he said.
“If we’ve got $100 to spend and we decide to spend $10 on vaccines we want to make sure that $10 is better spent on that than other treatments,” he said.
However, he said the vaccine was still available here and if parents assessed the risk and decided they wanted their child protected they could make that decision.
“The risk is really low and really rare and if you want to spend your money you can do it,” he said.
FEEDING a family of six on $20 a day while caring for a disabled child might sound like any other mother’s idea of hell, but for WA woman Aimee Burns, it’s the only way to avoid it.
As a 20-year-old first-time mum, Amy was terrified when her five-week-old son Cooper contracted Meningococcal B.
The rare disease, which affects only around 200 Australians a year, left Cooper in a life-threatening situation for months, followed by four years of full-time hospital care, when Ms Burns wouldn’t know whether her son would ever walk or talk.
Having survived the disease which kills one in 10 of its victims and permanently disables one in five, Ms Burns considers Cooper, now 12, “a miracle”.
“He’ll never drive, he can’t see beyond six metres, he has permanent muscle disability, ADHD and severe anxiety disorder,” she tells news.com.au.
“He’s amazing and we consider ourselves very lucky, but what this disease has already put us through is just devastating and I can't risk going through that again with any of our (other) children.”
It’s the pain that she’s already been through that’s led to the 32-year-old mum to save all she can of the Centrelink payment she and her husband both receive, so they can fork out $1700 tomorrow to have their three younger children immunised against the disease.
“It’s a lot of money. It’s a ridiculous amount of money. But we don’t have a choice,” she says.
“We’ve sold our TV, DVD player, we’ve reassessed our budget and figured that we can live on $20 a day and save for it.”
But for Ms Burns, it’s a no-brainer.
“No child, no family should have to go through this, especially when there is a vaccine readily available.”
There is a prevention for Meningococcal B. It’s called Bexsero and as of March last year it’s been available to Australians, but at a hefty price. A baby will require four vaccinations at $125 before age two for full protection.
The reason it’s so expensive is because the government is not subsidising the drug. As of last Friday, it has been rejected three times for approval to be included on the PBS and the immunisation schedule, leading parents to question why it’s even available, and why GPs are recommending the drug.
But as it’s been approved by the Therapeutic Goods Administration, president of the Royal Australian College of General Practitioners Dr Liz Marles explains parents needn’t worry about how it will effect their kids.
The approval process, Dr Marles says, is a numbers game.
“Bexsero has been subsidised in other countries and in trials it hasn’t shown any unusual side effects. The data shows it’s about 75 per cent effective and the only concern is that it’s unknown how effective it will be long term, but that data will come in time,” she says.
“It’s an economic decision. It’s very rare, but for high risk groups which include very young babies and children that have immune system disorders it’s worth looking into.”
In handing down its decision on whether to include the vaccine on the National Immunisation Program Schedule, the Pharmaceutical Benefits Advisory Committee based its rejection “on the basis of a limited demonstrations of, and multiple uncertainties in relation to, the clinical effectiveness of the vaccine against the disease when delivered in a vaccination program”.
It also noted “approximately 272,224 individuals would need to be fully vaccinated to avoid one death”.
Former AMA president and GP Dr Steve Hambleton explained these numbers didn’t make subsidising the drug viable to be publicly funded.
“It’s very low risk and the cost is high. It’s not a major health concern. It’s very pleasing that they’ve developed the vaccine, but parents don’t need to feel bad if they can’t pay for their child to be vaccinated,” he said.
Regardless of the numbers, Ms Burns just can’t get her head around the fact that any children should die, or be severely affected, like her son, by a disease that can be prevented.
“We’re in Australia and we’ve lost six lives this year because this isn’t on the immunisation schedule,” she says.
“Most parents probably wouldn’t even know their child isn’t vaccinated against this disease. We’ve been through it and we know what it’s like.”
A WOMAN has died in a New England hospital with meningococcal disease. This is the sixth case of meningococcal disease in the Hunter New England Health region this year.
Last year there were 11 confirmed cases of mening-ococcal disease in the Hunter New England Local Health district. There were nine confirmed cases in 2012, 15 in 2011 and 13 in 2010.
Hunter New England Health does not reveal which hospitals the cases occur at.
In the most recent death, close contacts of the patient have been prescribed clearance antibiotics. There are no links between the latest case and any previous cases.
Public health physician Dr Tony Merritt said seeking medical attention quickly may prevent the develop-ment of serious compli-cations.
"Meningococcal disease may be very severe and the community needs to be on the alert for its symptoms. If anyone suspects meningo-coccal disease, they should seek medical attention immediately," Dr Merritt said.
Up to 10 per cent of patients with invasive meningococcal disease in Australia die as a result of the infection.
The first symptoms of meningococcal disease may include pain in the legs, cold hands and feet and abnormal skin colour.
Later symptoms may include high fever, headache, neck stiffness, dislike of bright lights, nausea and vomiting, a rash of reddish-purple spots or bruises and drowsiness. Babies with the infection can be irritable, not feed properly and have an abnormal cry.
"Meningococcal infection does not spread easily,” Dr Merritt said.
“It is spread by secretions from the nose and throat of a person who is carrying it and close and prolonged contact is needed to pass it on. It does not appear to be spread through saliva or by sharing drinks, food or cigarettes.”
He stressed that while meningococcal disease could be serious, in most cases, early detection and treat-ment resulted in a complete recovery. Most cases of meningococcal disease are seen in infants, young children, teenagers and young adults, although peo-ple of any age can be infected.
The two main strains of meningococcal disease in Australia are the B and C strains. The National Immu-nisation Program includes a vaccine for the mening-ococcal C strain but not for the B strain of the disease. This means that young people who have had the meningococcal C vaccine should still be on the look out for symptoms.
"The number of cases of this rare disease has been falling over the past 10 years due in part to the success of the meningococcal C vaccination program," Dr Merritt said.
The meningococcal C vaccine is recommended for all babies at 12 months of age and currently in NSW, free vaccine is provided for unvaccinated people up to 25 years of age.
Where suspected or confirmed meningococcal disease has been diagnosed, public health officials will arrange for information and clearance antibiotics to be provided to close contacts, such as other members of the person's household.
The purpose of clearance antibiotics is to eradicate any meningococcal bacteria the contacts may be carrying to prevent further transmission of the disease.
SOURCE:The Inverell Times
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