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.

Medicinal Cannabis, its not Brain Surgery…..

hemisphere
Just a a quick post today. I have heard second hand anecdotal stories from a NZ Refugee to Colorado, that CBD rich Cannabis oil has worked on children for seizures where a much more drastic (and rare) procedure has failed.

I present to you the most radical and invasive treatment for seizures generated by only part of the brain, the Hemispherectomy.  Judging from this picture, it is as bad as it sounds.  Despite being so drastic, it actually has good results on average, with a close to 75% success rate.  Almost the entire Hemisphere of the brain that has unusual activity leading to seizures is removed…..

The brain has a significant ability to recover from this procedure, (neuroplasticity) and generally, the younger the procedure is preformed, the better the results. It actually doesn’t effect cognition as such when done young, in the happier cases, kids can obtain above average academically. Most are left with physical symptoms similar to a stroke, blindness or vision issues in one eye, and motor impairments down one side of the body, though these side effects pale into comparison to the risks for children on the medical equivalent of death row.

Although not part of the Hippocratic Oath, a key principle guiding modern medicine is  “first, do no harm” which is where the preference for Conservative or Non-invasive treatments stems from. So we have a dilemma, the use of an experimental medicine with scant but positive scientific research and attached legal baggage, versus a rare, but extreme, and on average effective treatment for those children with life threatening seizures.

As a parent, how would you feel if you agreed to lop off a chunk of your child’s brain, and the procedure fails…… desperate?

Desperate enough to move to Colorado to try something new? How would you then feel if you reduced the frequency, duration and severity of seizures by over 75% with a fairly basic plant derived preparation??

pretty good? how about only trying it after already having lopped out a sizeable chunk of you child’s brain?
Guilty in hindsight, though to be fair, this is new ground.

Going forward I would lay the blame at the surgeons feet, as the evidence continues to stack up in favor of Medicinal Cannabis, there is no excuse to not try a moderate risk drug over such a radical procedure…..

Out