Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults& Children with Tracheostomies by improving their Quality of life and where we also provide tailor made solutions to hospitals and Intensive Care Units to save money and resources, whilst providing Quality Care!
In the last blog I shared
You can check out last week’s episode by clicking on the link here.
In this week’s blog I want to share some good news that’s relevant for some of our clients in the community.
Budget 2018: Spinal muscular atrophy drug Spinraza (Nusinersen) to be added to Pharmaceutical Benefits Scheme in Australia!
I know that some of our clients have been waiting for these great news as their kids have been getting the drug as part of a trial! Now Spinraza/Nusinersen is finally on the PBS scheme and affordable.
Rather than paying $375,000 the drug is now available for $39.50 under the PBS scheme.
You can read more about the good news here, it was first published on May 6th on the ABC news website and also in the Sydney Morning Herald
Children with a muscle-wasting condition called spinal muscular atrophy (SMA) will get a new breakthrough drug for just $40, instead of hundreds of thousands of dollars.
- Access for life saving drug for genetic condition
- The drug Spinraza helps patients with spinal muscular atrophy
- More than $240 million to be allocated to fund the drug
Health Minister Greg Hunt told the ABC from June 2018, Spinraza will be available on the Pharmaceutical Benefits Scheme (PBS) for the treatment of Type 1, Type 2 and Type 3a SMA for all patients under the age of 18.
“This will be both life-saving and life-changing for hundreds of young patients and their families,” he said.
SMA is a rare, muscle-wasting genetic disorder that affects the motor neurons that control movement.
The most severe form, Type 1, can cause respiratory problems, extreme weakness and early death.
The disorder is the number one genetic killer in babies.
‘Mackenzie’s mission’ to improve screening and treatment
He called it “Mackenzie’s mission” after baby Mackenzie Casella, who died from SMA.
Many families of children with SMA have been lobbying for the drug Spinraza to be put on the PBS.
In 2017, baby Aviana Mcelwee from Darwin was the first Australian child to trial the medication.
Over the course of treatment, now injected into Aviana’s spine every four months, a baby who could previously only move her fingers and eyes began to hold up her head and peer around autonomously.
“She still can’t crawl or walk but now she can sit, which a Type 1 isn’t supposed to do independently,” her mother Bethan McElwee said.
The drug was approved by the Pharmaceutical Benefits Advisory Committee in April 2018, after being rejected in 2017.
“I have spoken to countless families about the need for this vital medicine and I know what a positive difference it will make,” Mr Hunt said.
Clinical trials showed the drug could improve motor function and survival.
More than $240 million will be allocated in the federal budget to list the drug on the PBS.
From $375,000 to just $39.50: Budget lifeline for children suffering spinal muscular atrophy
Parents of children with the muscle-wasting disease known as spinal muscular atrophy will get cheap access to a previously inaccessible life-saving drug in a measure to be included in Tuesday’s budget.
Spinal muscular atrophy is a rare muscle-wasting genetic disorder that affects the motor neurons that control movement. It is the number one genetic cause of death in Australian babies aged under two.
From June, the only effective medication for it, Spinraza, will be listed on the on the Pharmaceutical Benefits Scheme for just $39.50 per script, and $6.40 for concessional patients.
“Those families who currently have children that are dealing with this condition have to shell out almost $375,000 a year,” Treasurer Scott Morrison said on Sunday.
“We are putting that on the PBS. Those families are already going to be able to access their drugs right now, we have been working with the medicine sector to ensure they can achieve it right now. That will reduce that to less than $40 a script. That’s a cost of $240 million, but for these kids and their families there is no more essential service than keeping their kids alive.”
The independent Pharmaceutical Benefits Advisory Committee recommended the listing in April 2018 after rejecting it in 2017.
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The condition was brought to light by the McElwee family from Darwin, whose daughter Aviana was born with spinal muscular atrophy type 1. Most babies with the rare genetic condition die before their first birthdays. The average life expectancy without treatment is nine months. There is no cure.
Aviana was the first baby in Australia, and the ninth worldwide, to start treatment outside a clinical trial. She celebrated her first birthday last August.
“I have spoken to countless families about the need for this vital medicine and I know what a positive difference it will now make,” said Health Minister Greg Hunt said. “It delivers hope for so many beautiful young patients and their families.”
On Saturday the government announced a plan to plan to crackdown on illegal sales of untaxed tobacco it expected to raise $3.6 billion over four years.
Revenue Minister Kelly O’Dwyer said estimates suggested 864 tonnes of illicit tobacco escaped duty each year.
If you want to find out how we can help you to get your loved one out of Intensive Care including palliative care or Long-term acute care (also nursing home) or if you find that you have insufficient support for your loved one at home on a ventilator, if you want to know how to get funding for our service or if you have any questions please send me an email to [email protected] or call on one of the numbers below.
Australia/New Zealand +61 41 094 2230
USA/Canada +1 415-915-0090
UK/Ireland +44 118 324 3018
Also, check out our careers section here
We are currently hiring ICU/PICU nurses for clients in Melbourne, Sunbury and in South Gippsland/Victoria.
We are an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia.
We have also been part of the Royal Melbourne health accelerator program for innovative health care companies earlier this year!
Thank you for tuning into this week’s blog.
This is Patrik Hutzel from INTENSIVE CARE AT HOME and I see you again next week in another update!