Money Talks

[MoxieGirl]

I'm sure this has been looked into, so I'm probably teaching my granny to suck eggs, so forgive me if I'm bringing up a point that is already being developed.

The only real way to change law, in either the US or UK, is with money. (obviously) But not necessarily by having money, but by demonstrating financial benefit.

Trying to pin down a figure on how many work hours are lost to headaches is difficult (still running Google searches), but initial indications is that it runs into the Billions of Dollars! Here are what a couple websites say about it:

The World Health Organization:

Political/economic barriers

Many governments, seeking to constrain health-care costs, do not acknowledge the substantial burden of headache on society. They might not recognize that the direct costs of treating headache are small in comparison with the huge indirect-cost savings that might be made (eg, by reducing lost working days) if resources were allocated to treat headache disorders appropriately.

http://www.who.int/mediacentre/factsheets/fs277/en/

And from the migraines.org website:

The World Health Organization in 2004 in a Blue Book report noting that Migraine & Headache disorders are a global public health calamity. Dr Peer Tfelt-Hansen, president of IHS, explained:

"They are common neurobiological and often life-long conditions occurring throughout the world that affect men, women and children. They have been shown to cause a huge burden of disability. WHO ranks Migraine as one of the top twenty causes of years of healthy life lost to disability. And Migraine is but one headache disorder à all headache disorders together cause at least double the disability of Migraine alone."

http://www.migraines.org/myth/mythreal.htm

I know we are largely focused on Clusters. But I also know psilocybin works on migraines. And what if the law could be changed so that legal studies could be conducted on psilocybin, the result producing a drug that was effective on headaches, migraines AND clusters - and what if that drug got all these people back to work.

Now wouldn't that get business men to sit up and take note. And business men of course drive our politicians, who write our laws.

Just a thought.

Renée

[Mwib87]

Excellent point Renee! I often ponder the same question.

However I believe the consensus here is that the substance they should give us and all the migrainers access to is Bol-148 not psilocybin, since Bol-148 don't have a psychedelic effect I imagine it could be taken right before work.

If we could just get the migrainers informed about bol-148 our numbers would be to large to ignore.

/Michael

[MoxieGirl]

Thanks Michael,

My reading hasn't gotten so far to include much on the Bol-148 yet. Have touched on it a bit. The legal variant of LSD if I'm not mistaken.

But even with the mild trip effect - so a person might have to take the pill in the evening, or not drive for 6-8 hours, etc. How does that differ from many other meds on the market now with 2 pages of side affects? Also, with proper study in a lab, who's to say the trip effect couldn't be mitigated and dosage better designed and administered?

If someone has a migraine, they are likely going to be out of work for a day or two, in my case, 3-5 days. If I could take a pill that would guarentee to stop the migraine in a few hours, even if I had a mild trip for 6 hours, that would be amazing and get me back to work much, much sooner than anything I have now. (OK, haven't tried Bol-148)

Renée

[Pixie-elf]

BOL is synthesized so that it doesn't cause hallucinations.

But from what I've saw others say, the company is not trying to get them to approve it for migraines. They're strictly trying to get it approved for CH.

Mystina

[Bonkers]

I'd really like to see a few migraineurs included in the BOL studies. Many more people suffer from migraine than CH. Like Michael sez, If BOL were found to be as effective for migraine as it appears to be for CH and if we could get them on board with us, our numbers would swell to where they could no longer ignore us.

[spiny]

If we could actually SAY we were out due to a headache and not risk being docked or let go, they would give a much better picture of the issue at the workplace! Frequently we have to resort to stomach bug or sinus infection as a cover and that sucks! >

Our small numbers (CHers) make it almost certain that a med geared for us is not very likely to make it to market unless it helps migraine as well! > So, here's to BOL working for those heads as well.

In my book, it will be amazing if we actually get something that was designed for us, not just a side-bar for Rx designed for something else that works for some Chers.

Hope that makes sense to someone else.

Did you know that 'driving under the influence' includes prescribed meds as well as booze and illegal stuff? So, you have to be careful so as not to get a DUI. Sort of understandable I guess.

[CHfather]

From a longer post, which is down the page a bit at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317418320

>>>. . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug [bOL] focused on CH, since clinical trials on people with migraines would reveal the existence (or non-existence) of a much huger market, but would not demonstrate that it works for CH, hence would only mean that CH was available "off label" for CH, which I think would have implications for insurance coverage for CH use.  Just guessing here, but if I am understanding this correctly, then some people have already sacrificed a lot of short-term financial gain in order to serve people with CH.<<<

[1961mom]

And...to add to CHfather's post by including Migrainers in the upfront stages of the FDA approval we may be risking the greater influence (and deeper pockets) of the existing big pharma who would stand to financially lose should bol-148 be approved.  For many reasons, but the foremost being repeat customers!

What I understood from the guest speakers at both 2010 & 2011 conferences this is a very fine line of balance we must maintain so as not to get wiped off the face of the earth before we even get started.....sort of allow us to pursue the process, get FDA approval and then trickle out the off-label prescriptions to the migraine market.

[Pixie-elf]

Hell, I worry about Big Pharma because I suspect they make a killing off of us CHers.

I hope what they'll think is that they can just blow us, and BOL off / ignore it as long as they look at how many people have migraines. They'll say to themselves "We still have our regular income. No worries there."

Sure, it might be selfish, but it's also for the greater good.

[ThatHurtsMyHead]

The big drug companies are curently making Toooo much money off all the other crap the doctors presribe for CH...  Hell imitrex alone I think is around $30 per shot.  When I took imitrex shots I think my copay was around $30 for a two shot pack.  Likely the full price is much more than $30 per shot. 

For them to decide "Heck, let's help these people and cut a few billion from our net company profit...  Yea, that's a good idea"... 

I'd like to stay positive about legalizing fungus or bringing Bol148 to market, but big business makes decisions based on profit, not helping people...  Sad but true.

Jeff

[1961mom]

These issues & more are exactly what Clusterbusters Advocacy participants will be discussing, presenting & purposing when we go to Capital Hill to be heard along side the Migrainers March 26th & 27th. 

We'd love to add ya to the "I'm Going" group!!!~

[MoxieGirl]

I've signed the petition, but live in the UK (American by birth). Don't think I'll be able to make it, although I'm currently working for a company with offices in the States, and should be making occasional trips 'home' for work. So if the dates work out, I'd love to be there.