PETITION to save Alfie by allowing him to legally use medical cannabis

32
Found 20th Mar
Please don't vote cold because it's not a "deal".
One minute to sign the petition could change Alfie's life.
Currently 386,000 have signed.

change.org/p/p…bis
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32 Comments
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If he needs CBD oil you can buy that over here.
Signed. x
drasim49 m ago

If he needs CBD oil you can buy that over here.


Are they the same thing? Isn't CBD oil for a vapouriser?
Krooner4 m ago

Are they the same thing? Isn't CBD oil for a vapouriser?


On the petition page they mention they went to Netherlands where the Dr's gave him Cannabis Oil (CBD oil) which improved his condition.
I just figured it's worth mentioning you can buy that over here in Holland & Barrett among other places, and the NHS are trialling it.
drasim1 h, 1 m ago

If he needs CBD oil you can buy that over here.


I would have thought he needs the THC in the oil which is still currently illegal in every form in this country.
drasim11 m ago

On the petition page they mention they went to Netherlands where the Dr's …On the petition page they mention they went to Netherlands where the Dr's gave him Cannabis Oil (CBD oil) which improved his condition.I just figured it's worth mentioning you can buy that over here in Holland & Barrett among other places, and the NHS are trialling it.


I wasn't doubting you. I just don't know anything about it. My understanding is if you vape it that process destroys some of the THC. I thought maybe that was the bit Alfie needed, ergo; oil that was designed for vaping wasn't the same kind of stuff.
Not signed
drasim17 m ago

On the petition page they mention they went to Netherlands where the Dr's …On the petition page they mention they went to Netherlands where the Dr's gave him Cannabis Oil (CBD oil) which improved his condition.I just figured it's worth mentioning you can buy that over here in Holland & Barrett among other places, and the NHS are trialling it.


Holland and barrett amomg others sell a form of oil with the THC content removed or use plants like hemp which don't have it in, in the first place. Whilst these may have certain benefits to people who use them it's not the same thing for epilepsy it's thought the higher the THC content the better the oil for epilepsy. The problem is it's the THC content that makes cannibis illegal in most country's.
larrylightweight11 m ago

I would have thought he needs the THC in the oil which is still currently …I would have thought he needs the THC in the oil which is still currently illegal in every form in this country.


So there's no THC in the stuff on sale here at all? Or just an amount under a threshold??

EDIT - NVM, you've just answered.
Edited by: "Krooner" 20th Mar
Signed.
Signed.
groenleader4 h, 20 m ago

Not signed


I'm sure most misc regulars are well aware of my views on legalising cannabis - in short; NO!

But, facts are facts, I've seen an almost identical case to this where a friends son with the most dreadful epilepsy was almost miraculously helped using this stuff.
I can't deny what I know to be fact.

Personally, I believe the appeal is OTT on emotions and 'life-saving' claims, but it's not entirely false, there's a lot of truth in it, and for that reason I'm going to sign it, but I do so in the hope that it doesn't open the floodgates.
These gates need to be forever strong with only the undoubted exception such as this little boy getting through.
Whilst Cannabis cannot be legally be proscribed to patients, Sativex a medicinal strength Cannabis-based drug can be proscribed to patients with Multiple Sclerosis (MS). Also if the practitioners believe there is evidence that treatment using the drug would alieve or control the symptoms of other ailments or conditions including spasticity* (MS) or in this case Epileptic spasms or fits then it can be legally proscribed (under strict supervision). As with Cannabis, possession of the drug except under strict controls and circumstances is still illegal.

*medical terminology usage.
Edited by: "nemesiz" 20th Mar
Therapeutic cannabis could be a new promising treatment for medication-resistant epileptic children, I do agree with this though aren't we jumping the gun here a bit.

Further controlled and/or larger randomized studies are required to confirm the results of recent studies into the treatment for medication-resistant epileptic children, as the lead author of the efficacy and safety of cannabidiol use in children and young adults with treatment-resistant epilepsy has explained.

It's also worth bearing in mind that heavy, long term exposure to marijuana may have biologically-based physical, mental, behavioral and social health consequences and may be associated with diseases of the liver (particularly with co-existing hepatitis C), lungs, heart, and vasculature. So therefore one would assume that the use of medicinal cannabis would need to be used under the supervision of a healthcare professional such as a GP as Sativex is (Sativex (also known by its generic name of Nabiximols) a specific extract of cannabis that was approved as a botanical drug in the United Kingdom in 2010 as a mouth spray to alleviate neuropathic pain, spasticity, overactive bladder, and other symptoms of multiple sclerosis).

And how do we know what dosage to take?

I'm not assuming that the OP and the author of the petition are advocating the use of medicinal cannabis without the supervision of a GP by the way. It makes sense that this would have to be the case when prescribing this as it needs to be taken correctly, otherwise it will not work properly. Or even worse, it could result in adverse events if not taken correctly.

Also worth bearing in mind, many epileptic patients often need to use several medications at once.

Therefore, a wider exploration of possible interactions and health implications is still required to adequately determine CBD’s safety profile.

I'm afraid I won't be signing the petition as I think this is premature.
Edited by: "LemonHead" 20th Mar
CBD isn’t legalised cannabis - and the stuff from Holland and Barrett is not the same - people saying no to CBD because they think it’s cannabis are nothing more than robots spouting the nonsense and fear to things they don’t understand.

My daughter is on the list for when this legalised and It could change her life
It would be a lot easier to just legalise cannabis, or is that too obvious?
themorgatron1 h, 7 m ago

It would be a lot easier to just legalise cannabis, or is that too obvious?


NO' why should a recreational gateway drug be legalised can you imagine the reaction times of people stoned in the workplace or on the roads. Imagine a lorry driver driving a 40ton truck stoned. Cannabis is a very dangerous drug I don't care what anybody says it simply is.

How ever I do believe in medical liquid form for things like epilepsy then yes it should be used under doctors supervision. American trials have proved time and time again of benefits. Anybody who refused to sign this because they simply seen the word cannabis is a moron and needs to understand medical advancements. I also hope they never go to the doctors to ask for any type of drug which would have a some point been trailed.
I know all about the process and the hurdles, the science, the dosage issues, production issues and production reliability
- but you try having a child that has 100 seizures a day that mean they cant develop and learn and you see in other countries what a positive effect this drug has on similar children and you tell me about jumping the gun.... of course right now it should be a last resort... but for those that are seizing without control waiting for their brains to be damaged beyond repair or a waiting for a seizure that will kill them - I’m not really that bothered about debates in the daily mail....

i dont think it should be encouraged for all children with seizures but there drugs still administered by NHS - phenobarbital for example..... that we know the horrific side effects.... but for those that haven’t responsed to the normal list of drugs/ketogenic diet - this should be tried - even if it’s a punt - would any parent really rather wait to see if their child dies or try a drug that tested In this country and other has shown good results???
Even if the petition is ultimately unsuccessful (most likely result imo) Surely there must be a way of importing what he needs, whether legally or illegally. I wouldn't like to be the judge who punishes the parents.
joanddan746 m ago

I know all about the process and the hurdles, the science, the dosage …I know all about the process and the hurdles, the science, the dosage issues, production issues and production reliability - but you try having a child that has 100 seizures a day that mean they cant develop and learn and you see in other countries what a positive effect this drug has on similar children and you tell me about jumping the gun.... of course right now it should be a last resort... but for those that are seizing without control waiting for their brains to be damaged beyond repair or a waiting for a seizure that will kill them - I’m not really that bothered about debates in the daily mail.... i dont think it should be encouraged for all children with seizures but there drugs still administered by NHS - phenobarbital for example..... that we know the horrific side effects.... but for those that haven’t responsed to the normal list of drugs/ketogenic diet - this should be tried - even if it’s a punt - would any parent really rather wait to see if their child dies or try a drug that tested In this country and other has shown good results???

I completely agree with you and know where you are coming from its not right at all this is not available. I have a young child in my family who has uncontrollable epilepsy and have done my self extensive research into this. He has had brain surgery which only part worked insted of 100s of fits a day he now has maybe 10 or less. I fully believe with the backing of a doctor this should be available to try on the NHS some people it would work for maybe others it won't but that's luck of the draw with any meds. I believe they should be trying this even before brain surgery which is very costly and dangerous. The sooner the government approves it the better for medical science it makes sense.
deeky20 m ago

Even if the petition is ultimately unsuccessful (most likely result imo) …Even if the petition is ultimately unsuccessful (most likely result imo) Surely there must be a way of importing what he needs, whether legally or illegally. I wouldn't like to be the judge who punishes the parents.


100% right I know my family has considered it and probably still are.
joanddan73 h, 8 m ago

CBD isn’t legalised cannabis - and the stuff from Holland and Barrett is n …CBD isn’t legalised cannabis - and the stuff from Holland and Barrett is not the same - people saying no to CBD because they think it’s cannabis are nothing more than robots spouting the nonsense and fear to things they don’t understand. My daughter is on the list for when this legalised and It could change her life


I honestly hope your daughter gets a chance I think last time i spoke to my family about this maybe 6 children a year get the chance is that still the same. My family member had brain surgery at GOSH and it only part worked. I hope maybe he might get a chance at this in the near future.
I totally sympathize with what some people are saying though others unfortunately think that any use of cannabis is okay because it's "natural". As you can see from what I've written in my previous post the term natural is very ambiguous. One of the reason why I've said there needs to be further studies. And it isn't just because the word cannabis is being used here, we have to consider other implications as well.

So allow me to repeat what I've already said.

Therapeutic cannabis could be a new promising treatment for medication-resistant epileptic children, I do agree with this though for now I'm still of the opinion that we may be jumping the gun a bit. Though I must say in some sense maybe we are not now that I have thought about it, afterall there are also costs to consider as well, maybe where a petition might be handy.

telegraph.co.uk/new…tml

Anyway, as I have mentioned, further controlled and/or larger randomized studies are required to confirm the results of recent studies.

What we also need to understand is what dosage to take.

Let's not forget, long term exposure to cannabis may have biologically-based physical, mental, behavioral and social health consequences and may be associated with other diseases. Afterall, we don't yet know how safe cannabidiols are.

And let's also not forget, many epileptic patients often need to use several medications at once.

Therefore, a wider exploration of possible interactions and health implications is still required to adequately determine CBD’s safety profile.

You may not all be aware of the following either. As well as what I have already pointed out, one of the reasons why I've thought that maybe we don't actually need a petition.

Read on.

GW Pharmaceuticals, which in 2010 launched the world’s first prescription cannabis-derived drug in the form of multiple sclerosis treatment Sativex as mentioned above, boosted cultivation and manufacturing of the crop last year ahead of the launch of another promising experimental drug called Epidiolex, which has shown to be hugely effective in treating children with a deadly form of epilepsy.

GW Pharmaceuticals, a British company, plans to file Epidiolex with US regulators, and approval could come as early this year.

After final approval, drugs normally become available for physicians to prescribe.

telegraph.co.uk/bus…ad/

May be what we should be doing instead, or as well as, is considering contacting our MP's about this.

parliament.uk/get…mp/
LemonHead28 m ago

I totally sympathize with what some people are saying though others …I totally sympathize with what some people are saying though others unfortunately think that any use of cannabis is okay because it's "natural". As you can see from what I've written in my previous post the term natural is very ambiguous. One of the reason why I've said there needs to be further studies. And it isn't just because the word cannabis is being used here, we have to consider other implications as well.So allow me to repeat what I've already said.Therapeutic cannabis could be a new promising treatment for medication-resistant epileptic children, I do agree with this though for now I'm still of the opinion that we may be jumping the gun a bit. Though I must say in some sense maybe we are not now that I have thought about it, afterall there are also costs to consider as well, maybe where a petition might be handy.https://www.telegraph.co.uk/news/health/news/8136693/Drug-companies-exploit-legal-loophole.htmlAnyway, as I have mentioned, further controlled and/or larger randomized studies are required to confirm the results of recent studies.What we also need to understand is what dosage to take.Let's not forget, long term exposure to cannabis may have biologically-based physical, mental, behavioral and social health consequences and may be associated with other diseases. Afterall, we don't yet know how safe cannabidiols are.And let's also not forget, many epileptic patients often need to use several medications at once.Therefore, a wider exploration of possible interactions and health implications is still required to adequately determine CBD’s safety profile.You may not all be aware of the following either. As well as what I have already pointed out, one of the reasons why I've thought that maybe we don't actually need a petition.Read on.GW Pharmaceuticals, which in 2010 launched the world’s first prescription cannabis-derived drug in the form of multiple sclerosis treatment Sativex as mentioned above, boosted cultivation and manufacturing of the crop last year ahead of the launch of another promising experimental drug called Epidiolex, which has shown to be hugely effective in treating children with a deadly form of epilepsy.GW Pharmaceuticals, a British company, plans to file Epidiolex with US regulators, and approval could come as early this year.After final approval, drugs normally become available for physicians to prescribe.http://www.telegraph.co.uk/business/2017/02/11/uk-set-cannabis-boom-gw-pharma-storms-ahead/May be what we should be doing instead, or as well as, is considering contacting our MP's about this.http://www.parliament.uk/get-involved/contact-your-mp/


Key words I used "under doctors supervision" like I said before it may work for some and not others but that's the same as every other medical drug on the market. Anyway regardless of what we think the government has now approved according to the artical I posted in my last comment. Good luck to the family I hope it works out for them.
larrylightweight56 m ago

Key words I used "under doctors supervision" like I said before it may …Key words I used "under doctors supervision" like I said before it may work for some and not others but that's the same as every other medical drug on the market. Anyway regardless of what we think the government has now approved according to the artical I posted in my last comment. Good luck to the family I hope it works out for them.


First of all, well done to Hannah Deacon for all she has achieved for her son Alfie.

Though from the article you have posted, it appears that this won't actually be provided by the NHS except in rare cases on compassionate grounds.

Of course this is got to do with cost. Yes, one of the biggest obstacle is cost unfortunately. Like with Orkambi, a drug for cystic fibrosis which costs £104,000 per patient for every year of treatment.

Analysts in the US also expect Epidiolex to cost $2,500 (£1,786) to $5,000 (£3,572) a month, which would be more expensive than some of the medical marijuana products, which cost from about $100 (£71) to more than $1,000 (£714) per month.

Professor Carole Longson, director of the Nice centre for health technology evaluation, said: 'We know how important a new treatment option would be for people with cystic fibrosis; but for the benefits it offers, the cost of Orkambi is too high.

'We can only recommend treatments when we are certain they are both clinically effective and represent good value for money.

'If the company is able to put forward a proposal that provides Orkambi at a cost-effective price, we would welcome it.'

dailymail.co.uk/new…tml

What is needed to solve this is a compulsory licence clause that cuts the cost of drugs similar to what India has. And of course our government should also attempt to close any loopholes.

To ensure we have affordable access, countries like ours should grant a compulsory licence clause that cuts the cost of drugs by allowing another company to manufacture the therapy, even though it is still under patent. Or something similar. This would and should hopefully reduced the price of drugs like Orkambi and Epidiolex.

In India this has slashed the price of Nexavar, used as a treatment for liver cancer, by an astounding 97%. The price of this drug is around £3,000 per month, which drug regulators say is "simply too high" to justify making it available on the NHS.

Why are drugs so expensive? As mentioned in the Telegraph article I posted above if you haven't already read it.

Rules that were intended to encourage drug companies to research and develop new medicines for rare diseases are being misused.

Instead of developing new drugs they are obtaining licenses for existing ones and hiking up the price by up to 700%.

And because of this some NHS hospitals are now refusing to fund drugs that were previously available cheaply while the NHS faces paying millions of pounds extra a year for the same, or very similar, medicines.

Doctors have also provided several examples of price hikes, including a drug to treat rare muscle diseases which used to cost £800 to £1,000 per patient per year.

After obtaining a licence and slightly modifying the drug, the drug company now charges £40,000 to £70,000 per patient per year...........

People might also find the following interesting as well.

mobile.nytimes.com/201…tml
larrylightweight20th Mar

NO' why should a recreational gateway drug be legalised can you imagine …NO' why should a recreational gateway drug be legalised can you imagine the reaction times of people stoned in the workplace or on the roads. Imagine a lorry driver driving a 40ton truck stoned. Cannabis is a very dangerous drug I don't care what anybody says it simply is.How ever I do believe in medical liquid form for things like epilepsy then yes it should be used under doctors supervision. American trials have proved time and time again of benefits. Anybody who refused to sign this because they simply seen the word cannabis is a moron and needs to understand medical advancements. I also hope they never go to the doctors to ask for any type of drug which would have a some point been trailed.


It's a bloody nightmare at work with all the people boozed up. Don't get me started about the terror of British roads with drunk lorry drivers regularly mounting the kerb, hitting innocent children on their way to school.

Cannabis is less dangerous than alcohol. There's also very little proof that it is a "gateway drug". Legalise it, and you do away with all the hand wringing over what is legal, and what isn't.
themorgatron4 h, 11 m ago

It's a bloody nightmare at work with all the people boozed up. Don't get …It's a bloody nightmare at work with all the people boozed up. Don't get me started about the terror of British roads with drunk lorry drivers regularly mounting the kerb, hitting innocent children on their way to school.Cannabis is less dangerous than alcohol. There's also very little proof that it is a "gateway drug". Legalise it, and you do away with all the hand wringing over what is legal, and what isn't.


The gateway theory is hotly debated.

Another alternative to the gateway hypothesis is the common liability to addiction theory. It states that some individuals are, for various reasons, willing to try multiple recreational substances. The "gateway" drugs are merely those that are (usually) available at an earlier age than the harder drugs.

It's also worth bearing in mind, scientists have been researching the effects of alcohol for decades, the science of cannabis is a lot murkier because of its mostly illegal status.

Both drugs may be linked with risks while driving, but alcohol is worse?

Research published by the National Highway Traffic Safety Administration found that, when adjusting for other factors, having a detectable amount of THC (the main psychoactive ingredient in cannabis) in your blood did not increase the risk of being involved in a car crash. Having a blood-alcohol level of at least 0.05%, on the other hand, increased that risk by 575%.

Combining the two however appears to have the worst results. So be careful not to drink while smoking, and vice versa.

Cannabis also appears to be significantly less addictive than alcohol.

However, both drugs are linked with an increased risk of psychiatric disease. For cannabis users, psychosis and schizophrenia are the main concern; with alcohol, it's depression and anxiety.

The largest review of marijuana studies found substantial evidence of an increased risk among frequent marijuana users of developing schizophrenia — something that studies have shown is a particular concern for people already at risk.

And there are other issues at play here as well.

Government's will obviously want to factor in cost to society as well. Maybe one of the main reasons why governments are reluctant to legalise it when you consider the evidence.

Mental illness is already estimated to cost the UK economy as much as £100bn a year in terms of healthcare, lost jobs, unemployment benefits, homelessness support, police time and prisoner places.

Mental health problems in the UK workforce alone cost employers almost £35bn (figure for 2016), up from £26bn ten years prior to the published figure, according to research published by the Centre for Mental Health.

The above figures are factored in in terms of inflation and a rise in the size of the workforce since 2007.
Edited by: "LemonHead" 21st Mar
themorgatron7 h, 40 m ago

It's a bloody nightmare at work with all the people boozed up. Don't get …It's a bloody nightmare at work with all the people boozed up. Don't get me started about the terror of British roads with drunk lorry drivers regularly mounting the kerb, hitting innocent children on their way to school.Cannabis is less dangerous than alcohol. There's also very little proof that it is a "gateway drug". Legalise it, and you do away with all the hand wringing over what is legal, and what isn't.


Always someone to pull the alcohol vs cannabis debate. Yes alcohol is dangerous if driving no debate about it so no point in going there. But so is cannabis people who are stoned have the reaction times of a slug and just smile like life don't matter. People who are stoned behind the wheel or in the work place like on a building site should be prosecuted or saked. I can't not stand working with stoned people who can not do simple things when stoned the same as I can not stand working with some idiot who thought it good to go pub at lunchtime.
larrylightweight21st Mar

Always someone to pull the alcohol vs cannabis debate. Yes alcohol is …Always someone to pull the alcohol vs cannabis debate. Yes alcohol is dangerous if driving no debate about it so no point in going there. But so is cannabis people who are stoned have the reaction times of a slug and just smile like life don't matter. People who are stoned behind the wheel or in the work place like on a building site should be prosecuted or saked. I can't not stand working with stoned people who can not do simple things when stoned the same as I can not stand working with some idiot who thought it good to go pub at lunchtime.


When it comes to addiction profiles and risk of death or overdose combined with ties to cancer, car crashes, violence, and even obesity, the research suggests that marijuana may be less of a health risk than alcohol.

"Obesity!?", I hear you say. Yes, cannabis as you know gives you the munchies. It makes you hungry, reduces the natural signals of fullness, and may even temporarily make food taste better.

Alcohol, on the other hand, as you know, is linked with weight gain. A can of beer has roughly 150 calories, and a glass of wine has about 120.

But despite eating the extra calorie intake when smoking, marijuana users generally don't have higher body-mass indexes. In fact, studies suggest that regular smokers have a slightly reduced risk of obesity.

Still, because of marijuana's largely illegal status, long-term studies on all its health effects have been limited — meaning more research is needed.

I think we also have to be cautious when we say legalise it as the issues surrounding cannabis are very complexed. After all heavy, long term exposure to marijuana may have biologically-based physical, mental, behavioral and social health consequences. All of these issues have to be taken into consideration when deciding whether or not to legalise it.

independent.co.uk/news/health/we-took-a-scientific-look-at-whether-weed-or-alcohol-is-worse-for-you-and-there-appears-to-be-a-a8056186.html

https://en.m.wikipedia.org/wiki/Cannabis_(drug)

theguardian.com/healthcare-network/2016/may/17/economic-cost-of-mental-illness

centreformentalhealth.org.uk/News/mental-health-problems-at-work-cost-uk-economy-349bn-last-year-says-centre-for-mental-health
Edited by: "LemonHead" 22nd Mar
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