Ron Strider
Well-Known Member
Renee Harvey has one of the worst cases of Tourette's syndrome in the country, but a cannabis-based drug that may help is out of reach.
Renee Harvey just wants to be able to do things like other young women her age.
She wants to get her driver's license, take her six-year-old son Neko out for the day and watch a TV program with her nana.
She doesn't want to keep fighting against Tourette's syndrome, a neurological condition characterized by involuntary vocal outbursts and physical movements known as tics.
Harvey's tics include swearing, spitting, bashing her ears and other involuntary movements that are beginning to take a serious toll on her body.
"The most simplest things are so friggin' hard for us," she says.
Harvey, from Nelson, was one of the New Zealanders with Tourette's who featured on documentary Camp Twitch last month.
The documentary showed the effect the cannabis-based drug Sativex had on the life of another Tourette's sufferer in Tauranga, Adam Belcher.
Doctors involved with Belcher's treatment attended the camp and Harvey was given a prescription for Sativex.
She started taking the drug soon after Camp Twitch in October, but by Christmas was told that there were no options for funding it.
There was mention on the documentary of a nationwide Sativex trial for those with Tourette's, but that did not eventuate.
At a cost of $1300 a month, it is not something Harvey or her family could afford long term, so for the last six months, she hasn't had any Sativex – a period her family say has been a "nightmare".
Harvey said she was real "stressed and emotional" to learn there was no funding available for the drug.
It had given her the ability to do simple tasks with an ease she has never had before.
After a trip to the supermarket, she told her nana, Sandy Rickard, that for the first time in her life, she had been able to stop and look at everything on the shelves.
"It relaxes your muscles, you can focus and you have a calmness," Harvey said.
"I feel like I've got time, if that makes sense, I am not rushing around."
While taking Sativex, her tics eased. Two sprays under the tongue took about 45 minutes to take effect.
"I felt really successful and happy and proud of myself. It was just a good feeling.
"It gives my granddaughter time to sit with her son and read him a book and do schoolwork, color in at the table," Rickard said.
One of her tics causes her to bash her ears with her fists, which resulted in a hematoma that needed to be drained of fluid.
Harvey has had teeth removed and others ground down because of constant chewing, so now wears a mouth guard to prevent her teeth from deteriorating further.
She also has several injured discs in her spine from constant tics, which causes ongoing pain.
Her family feel let down as they have seen the positive effects of Sativex, but despite their best efforts, they aren't able to get a prescription let alone funding for the drug.
"I am angry about it," Rickard said. "It just goes on and on."
Tourette's Association of New Zealand founder Robyn Twemlow said Harvey's case was one of the worst in the country.
She said for many with Tourette's, their tics abated as they got older. But for a small number, like Harvey, their tics worsened.
Out of 200 of the association's members, only seven of them were adults.
Twemlow said Harvey had a "heart of gold" and was "hilariously funny".
Only a small percentage of individuals with Tourette's syndrome would continue to have tics at the same level into adulthood.
She said because Tourette's was a neurological condition, not a mental health condition or a disability, it was difficult to get funding or support.
"From my perspective, it would be great if there was a nationwide standard to see if your severity of tics qualified for Sativex funding."
Bay of Plenty mental health clinical director Dr Sue Mackersey said the Sativex trial mentioned in the documentary did not go ahead because a decision was made to support a trial based outside New Zealand.
She said Adam Belcher was prescribed Sativex that was funded by the BOPDHB as part of a clinical case study.
"There is currently no funded Sativex for people with Tourette's. This means that a person with Tourette's who is using Sativex will need to self-fund."
Nelson Marlborough Health general manager Jane Kinsey said the health board had been in touch with Harvey's GP about her treatment.
"We are arranging a meeting with neurologists, Renee's GP, pain specialists and clinical leaders to work out the best options for Renee – specifically looking at Sativex.
"We all have Renee's wellbeing in mind but need to make sure the right people are in the room which will take some time to arrange."
Nelson Labor Party candidate Rachel Boyack has been helping Harvey in her bid to access Sativex and said the cost of the drug was simply unaffordable.
"There are some barriers there for her, she obviously is suffering significantly and it is having a massive impact on her quality of life and having an impact on her wider family."
She said there was a lack of consistency across the health system in ensuring people received treatment that was fair and accessible across the country.
"Why should a young woman in Nelson miss out on a treatment that might potentially help her have a decent quality of life, when a young man in Tauranga can access the same treatment?"
"The health system has been underfunded . . . and it is people like Renee who are slipping through the cracks in the system when there could well be an opportunity for her to have a much better quality of life."
News Moderator: Ron Strider 420 MAGAZINE ®
Full Article: Nelson woman's battle for medicinal cannabis to combat Tourette tics | Stuff.co.nz
Author: SAMANTHA GEE
Contact: Contact Us | Stuff.co.nz
Photo Credit: MARION VAN DIJK
Website: Latest breaking news NZ | Stuff.co.nz
Renee Harvey just wants to be able to do things like other young women her age.
She wants to get her driver's license, take her six-year-old son Neko out for the day and watch a TV program with her nana.
She doesn't want to keep fighting against Tourette's syndrome, a neurological condition characterized by involuntary vocal outbursts and physical movements known as tics.
Harvey's tics include swearing, spitting, bashing her ears and other involuntary movements that are beginning to take a serious toll on her body.
"The most simplest things are so friggin' hard for us," she says.
Harvey, from Nelson, was one of the New Zealanders with Tourette's who featured on documentary Camp Twitch last month.
The documentary showed the effect the cannabis-based drug Sativex had on the life of another Tourette's sufferer in Tauranga, Adam Belcher.
Doctors involved with Belcher's treatment attended the camp and Harvey was given a prescription for Sativex.
She started taking the drug soon after Camp Twitch in October, but by Christmas was told that there were no options for funding it.
There was mention on the documentary of a nationwide Sativex trial for those with Tourette's, but that did not eventuate.
At a cost of $1300 a month, it is not something Harvey or her family could afford long term, so for the last six months, she hasn't had any Sativex – a period her family say has been a "nightmare".
Harvey said she was real "stressed and emotional" to learn there was no funding available for the drug.
It had given her the ability to do simple tasks with an ease she has never had before.
After a trip to the supermarket, she told her nana, Sandy Rickard, that for the first time in her life, she had been able to stop and look at everything on the shelves.
"It relaxes your muscles, you can focus and you have a calmness," Harvey said.
"I feel like I've got time, if that makes sense, I am not rushing around."
While taking Sativex, her tics eased. Two sprays under the tongue took about 45 minutes to take effect.
"I felt really successful and happy and proud of myself. It was just a good feeling.
"It gives my granddaughter time to sit with her son and read him a book and do schoolwork, color in at the table," Rickard said.
One of her tics causes her to bash her ears with her fists, which resulted in a hematoma that needed to be drained of fluid.
Harvey has had teeth removed and others ground down because of constant chewing, so now wears a mouth guard to prevent her teeth from deteriorating further.
She also has several injured discs in her spine from constant tics, which causes ongoing pain.
Her family feel let down as they have seen the positive effects of Sativex, but despite their best efforts, they aren't able to get a prescription let alone funding for the drug.
"I am angry about it," Rickard said. "It just goes on and on."
Tourette's Association of New Zealand founder Robyn Twemlow said Harvey's case was one of the worst in the country.
She said for many with Tourette's, their tics abated as they got older. But for a small number, like Harvey, their tics worsened.
Out of 200 of the association's members, only seven of them were adults.
Twemlow said Harvey had a "heart of gold" and was "hilariously funny".
Only a small percentage of individuals with Tourette's syndrome would continue to have tics at the same level into adulthood.
She said because Tourette's was a neurological condition, not a mental health condition or a disability, it was difficult to get funding or support.
"From my perspective, it would be great if there was a nationwide standard to see if your severity of tics qualified for Sativex funding."
Bay of Plenty mental health clinical director Dr Sue Mackersey said the Sativex trial mentioned in the documentary did not go ahead because a decision was made to support a trial based outside New Zealand.
She said Adam Belcher was prescribed Sativex that was funded by the BOPDHB as part of a clinical case study.
"There is currently no funded Sativex for people with Tourette's. This means that a person with Tourette's who is using Sativex will need to self-fund."
Nelson Marlborough Health general manager Jane Kinsey said the health board had been in touch with Harvey's GP about her treatment.
"We are arranging a meeting with neurologists, Renee's GP, pain specialists and clinical leaders to work out the best options for Renee – specifically looking at Sativex.
"We all have Renee's wellbeing in mind but need to make sure the right people are in the room which will take some time to arrange."
Nelson Labor Party candidate Rachel Boyack has been helping Harvey in her bid to access Sativex and said the cost of the drug was simply unaffordable.
"There are some barriers there for her, she obviously is suffering significantly and it is having a massive impact on her quality of life and having an impact on her wider family."
She said there was a lack of consistency across the health system in ensuring people received treatment that was fair and accessible across the country.
"Why should a young woman in Nelson miss out on a treatment that might potentially help her have a decent quality of life, when a young man in Tauranga can access the same treatment?"
"The health system has been underfunded . . . and it is people like Renee who are slipping through the cracks in the system when there could well be an opportunity for her to have a much better quality of life."
News Moderator: Ron Strider 420 MAGAZINE ®
Full Article: Nelson woman's battle for medicinal cannabis to combat Tourette tics | Stuff.co.nz
Author: SAMANTHA GEE
Contact: Contact Us | Stuff.co.nz
Photo Credit: MARION VAN DIJK
Website: Latest breaking news NZ | Stuff.co.nz