11 Apr MS Society, Cannabis And The SATIVEX Scam.

In the week just gone, on 8th April, Peter Reynolds of CLEAR was interviewed on BBC Radio Kent. Peter was on the programme to talk about CLEAR’s recent publication Medicinal Cannabis: The Evidence

Also appearing on the show was Nick Rijke, Director of Policy and Research for the MS Society. Now you would expect Nick to be especially well informed about the cannabis debate because of the history it has within the society. Cannabis has been something of an issue for some years because of the number of MSers (‘MSer’ is the term people with MS use to describe themselves) pushing for the right to use it as a medicine, a situation which still exists.

Nick Rijke, Director of Policy and Research for the MS Society

Nick didn’t debate anything with Peter, but rather simply outlined the MS Society’s attitude to cannabis.

It makes for interesting listening, not only for his – it can only be deliberate – misunderstanding of the issues surrounding cannabis law reform, but also the way he is seemingly unaware of the options for prescribing cannabis beyond Sativex. For someone in his position to show such a lack of understanding is surprising to put it mildly.

Listen to Nick Rijke of the MS Society speaking on Radio Kent 8th April 2015

To understand why I make that criticism of Nick I need t explain a little about MS the illness, MSers the people and my contact with the MS debate.

MSers are an interesting bunch who are very proactive. There’s a lot of them, about 100,000 people in the UK have MS and many of them are quite young. As a group they are big on self-help in a way I haven’t seen with any other illness.

Perhaps it’s because of the nature of MS; it’s a creeping degenerative illness that often starts with small issues, tingling in arms, numbness, dizzyness, symptoms which get worse and worse and in some people lead to being chairbound and in great pain. It often starts in teenage or early twenties and an MSer can sometimes have a long time to come to terms with the illness, not that that helps. So perhaps all this explains why MSers are such a proactive bunch, and make no mistake, they are very proactive.

Cannabis has acknowledged medicinal benefits for MSers, not least in reducing spasticity. Cannabis isn’t a cure for MS, there isn’t one, but as many MSers have said, it helps. Of course this is counter to the government’s insistence that there is no medicinal benefit from herbal cannabis. Getting access to medicinal cannabis for MSers is therefore a part of the cannabis law reform debate.

It’s no surprise then that in the years I’ve been involved with the campaign, I’ve had the privilege of meeting a fair few MS activists and of hearing about a great many more.

The CLEAR Medicinal Users Panel (MUP) includes several MSers, Penny Fitzlyon and Clare Burns feature on our latest medicinal leaflet ‘Cannabis Save Lives‘. MUP has been lobbying the government to allow doctors to prescribe medicinal cannabis.

In the past, before CLEAR, there were some notable campaigners whose efforts showed the brutal side of cannabis prohibition:

Mark and Lezley Gibson – Lezley has MS – ran an organisation called THC4MS for several years, supplying cannabis infused chocolate to MSers around the country. They had good relations with the police and made no secret of what they were doing, but one day in 2005 they were busted and in 2006 they were found guilty of supply. – Guardian report.

One person I never met was Biz Ivol, an MSer who lived in the Orkney Islands. Again, Biz made cannabis infused chocolate for other MSers and made no secret of her actions. Biz was a real fighter whose life was made unbearable by her MS. She described it as like having barbed wire pulled through her spine. She was raided in 2004 and faced a lengthy court trial. Biz was weak and very ill and iit was just too much for her. She took her own life rather than endure the torture – and that is not too strong a word for what she faced.

STV North Tonight Report – Biz Ivol

This phase of activism took place between about 1995 and 2005 and along with other MSers speaking out and wanting change they looked to the MS Society for help.

The MS Society’s mission statement makes it quite clear what its role is supposed to be:

The MS Society is the UK’s leading MS charity. Since 1953, we’ve been providing information and support, funding research and fighting for change.

Note the “fighting for change” bit, there is nothing in there about enforcing or supporting any aspect of government policy.

The issue of medicinal access to cannabis was threatening to get out of hand and had the potential to undermine the hard line against cannabis being taken by the ‘New Labour’ government of Tony Blair. It determined that a lid should be placed on the cannabis law reform debate and these people needed to be silenced.

But despite this hard line repression the government had to be seen to be doing something to help these genuinely ill people. The green light was thus given for the development of a “cannabis based” medicine.

Instead of campaigning in support of the many MSers who had been using cannabis illegally, the MS society fell into line with the government plans.

Unbelievably the line from the MS Society seems to have been the law must be obeyed and MSers just had to suffer and wait for the new government approved medicine. Sativex is the long awaited cannabis drug which MSers have been told to wait for, the problem is Sativex doesn’t come cheap.

If you look on the MS Society website today, all it has in the way of information about cannabis is “cannabis is an illegal drug“. It goes on to say “However a cannabis-based oral spray called Sativex is licensed for the treatment of spasticity in people with MS”, but that’s it. Nothing else. It should be noted that Sativex isn’t a “cannabis based” drug, it is cannabis, containing as it does all the active ingredients found it herbal cannabis, albeit with a carefully controlled THC/CBD ratio.

So instead of fighting for change the MS Society went along with the government’s promise of allowing a pharmaceutical company to develop a cannabis medicine and for about 10 years it did nothing to support MSers. Biz and Lezley were treated like criminals and had no support from the MS Society, upholding the government’s prohibition policy was seen as somehow more important. The cynic in me suspects this was due to pressure from the Tony Blair government and it seems like the MS Society rolled over and agreed not to rock the boat on the promise of a legal medicine soonish.

Now of course, because of my interest in cannabis law reform it may be that I have an unrepresentative view of MSers and to an extent this is true, or was true until a few years ago.

I work in a college as a media technician, which means I run the TV studio and editing suites amongst other fun things. Sometime around 2006 we had a student with MS who I became friends with. Gloria had no connection with any aspect of the cannabis campaign and had no wish to be associated in any way with recreational cannabis users. She was a budding film maker and when she finished her course she demonstrated the MS activism I mentioned by setting about making a DVD for newly diagnosed MSers. She bit off a bit more than she could chew and one day she turned up in my office with a bunch of tapes asking for help editing the final production. The result was ‘Shifting MS’.

Shifting MS – GLORIA Morris 2011

During the months we spent on various elements of this production I was introduced to the local MS branch. Although none of these people were cannabis activists, they were just ordinary people with this terrible illness, they were very much aware of the debate.

In this respect Gloria was probably typical of many if not most MSers; she was aware of the claims about cannabis but didn’t want to break the law, so she didn’t want to try something many people told her would help. This might go some way in explaining the attitude of the MS Society.

What this video does show though is the proactive nature of the MSers. One of the people interviewed is George Pepper who started an MSer support website called ‘Shift.ms‘ which is happy to discuss medicinal cannabis use. Shift.MS has grown to be a major resource for MSers.

Shift.ms website front page

At the time we were making ‘Shifting MS’ Sativex was just about to become available, so I made sure it was included in the list of drugs shown on the video which could be used by MSers. The expectation was that it would soon be generally available, but as we now know, this wasn’t to be.

So we come back to Nick Rijke comments to Radio Kent and his plea for Sativex to be given to MSers. This, after all, was the promise made to the MS Society by Blair’s government. Sativex isn’t available on the NHS (apart from in Wales) because of the cost; Sativex, which is cannabis oil with a THC:CBD ratio of 1:1, is simply too expensive. It is the world’s most expensive cannabis by a country mile. The MS Society has every right to feel let down by the government.

What Nick should be aware of is the option of Bedrocan, the herbal cannabis grown to very high standards for the Dutch government which costs a fraction of the price of Sativex. He surely knows about this option, yet the MS Society has said nothing about it. How can this be?

Sativex or Bedrocan

Of course CLEAR supports the MS Society plea for Sativex to be made available to MSers. But it isn’t the only option.

So I would like to ask Nick Rijke and the MS Society if they will support the CLEAR campaign to allow doctors to prescribe Bedrocan herbal cannabis. This is a very narrow and well defined option which does involve challenging the government’s policy, but is far away from the “free for all” Nick fears.

I’m not actually asking him or the MS Society so publicly affiliate to the CLEAR campaign, simply to speak out in support of the aims. MSers could have medicinal cannabis tomorrow at a fraction of the cost of Sativex.

Derek Williams

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