Ministry of Health approves medicinal cannabis treatment

The parents of 7 year old girl Zoe Jeffries have obtained Ministry of Health approval fore 6 months use of Sativex. This is one of a total of 97 ministerial approvals for the cannabis derived medicine. It shows that it is possible now to get medicinal cannabis, although it isn’t easy.

And it isn’t cheap – Zoe’s parents are fund raising to try and cover the costs. See the bottom of this post for details.

It’s also far from easy caring for a girl with uncontrolled epilepsy, spastic quadriplegia cerebral palsy, microcephaly, cerebral visual impairment, is tube fed and who has had severe seizures since birth.

It shouldn’t be this difficult getting medicines that may help.

NZ Herald reports Ministry approves cannabis treatment for 7-year-old girl:

The parents of a 7-year-old girl have the green light to use medicinal cannabis to control their daughter’s severe seizures.

Karen and Adam Jeffries have Health Ministry approval to give their daughter Zoe the cannabis oil-based mouth spray Sativex for the next six months.

“It has been a long time coming, it’s great news,” mum Karen Jeffries told the Herald on Sunday.

The Jeffries began researching medical cannabis in 2013 in the hope of finding a drug to reduce the hundreds of seizures their daughter suffers each day.

Two years is a long time to obtain a medicine that may help. And there is only one cannabis based medicine currently available in New Zealand. It may or may not be the most appropriate to try.

The Rotorua girl is understood to be one of the youngest in New Zealand to receive the medicine. Another child, a 5-year-old, has been approved use.

“We have been on it for a couple of weeks so it is early days but she is a lot more settled already.”

“You want to try to control the seizures that cause additional brain damage, but also you want to allow your child a life, to be awake and not drowsy, or have the strength to stand or just hold their head up high,” her father Adam said.

The medicine hadn’t dramatically changed the number of seizures Zoe suffers but this week, teachers at Glenholme School in Rotorua said she returned to school happier.

“When she started school this week they saw a completely different child,” Karen Jeffries said. “She was a lot more settled and was able to cope with noise and was a lot less distressed.”

It’s a lot to hope for a miracle cure for such serious medical problems, but parents should be able to hope for some improvement in their child’s condition. It’s good to see that that may be being achieved.

But it is expensive for the Jeffries.

Sativex is the only approved cannabis-based medicine registered with Pharmac but is not funded. It can be prescribed by a doctor but each case needs Health Ministry approval. To date, there have been 97 ministerial approvals, and there are currently 27 users of Sativex.

Each bottle lasts around four weeks and costs $1050. The Jeffries paid for the first script with a well-timed tax return and have set up a Givealittle page to help fund repeat scripts.

Givealittle ‘Meds for Zoe’: Please help Zoe continue with the chance at a better quality of life…

For information on medicinal cannabis in New Zealand: United in Compassion

United In Compassion NZ is a non profit lobby for the re-introduction of Medicinal Cannabis and a community for patients and carers. We are on a journey to access medicinal cannabis through Education, Compassion and Logic.

Pressure on Dunne – another mother wanting medicinal cannabis

There is pressure on Peter Dunne with another mother applying pressure to be able to use medicinal cannabis to treat her 7 year old daughter.

The Rotorua Post (via NZH) reports: Hope for Zoe in cannabis oil

Zoe has neurodevelopmental disorder and refractory seizure disorder, due to her brain being deprived of oxygen during birth.

Mrs Jeffries said doctors had given her 24 hours to live but, seven years on, Zoe was still fighting. “It’s the ups and downs that make it hard. You can only live each day as it comes … As a family, we are extremely happy Mr Dunne has shown considerable compassion and approved the use of Elixinol for Alex (Renton).

“In regards to Zoe, she has had a list of seven pharmaceuticals to trial this year. There is one left to try and she still continues to have hundreds of seizures daily”.

Dunne has made it clear that approval for Alex didn’t set a precedent:

Mr Dunne stressed the use of Elixinol in Mr Renton’s situation wasn’t a precedent and shouldn’t be seen as a “significant change in policy”.

But that is contradicted.

Mr Dunne said doctors had been able to apply for medicinal cannabis products for many years but it was the first time that avenue had been used for that product.

More products are available now, and more testing is being done, and more anecdotal evidence is becoming available. And there’s quite a bit of research pending.

What Mrs Jeffries will need to do is apply to the Ministry for approval to use a product.

Ministry of Health advice was “50/50 saying that there’s no compelling evidence that this product will work. On the other hand there’s no compelling evidence it will do significant damage to him”.

She needs to show that there is reasonable evidence the product might work, and that there is no compelling evidence it will not do any damage to Zoe.

Ideally approval for the product in general can be obtained to save parents from going through procedures and more stress.

It will help if more doctors and specialists ask for these relatively safe products too.

Mrs Jeffries said UICNZ was working constructively with the Ministry of Health to change that. “We hope to be able to implement a methodical regime here in NZ. Ideally compassion for one can equate to compassion for all in need.”

” Zoe is my inspiration for becoming a trustee with United in Compassion NZ (UICNZ), a sister branch of the Australian organisation who worked with Rose Renton on Alex’s case. As a non-profit we are working towards the goal of medical cannabis in NZ, and doing so from an angle highlighting education, compassion and logic.”

UICNZ now has charity status and has set up a Givealittle page to raise funds. For more information visit unitedincompassion.org.nz/2015/06/13/united-in-compassion-is-officially-registered-and-seeking-donations/

Karen Jeffries is far from the only parent desperate for something that will effectively treat their child.