Bonkers Posted September 30, 2011 Share Posted September 30, 2011 Pardon my naivete. I think I understand the reasons why it's taking so long to bring BOL to market. What I don't understand is how the business and scientific types running Entheogen expect to make so much money on it. Their primary market has to be us, right? If BOL works as well as promised and 3 pills either eliminate CH or put it into long remission, how much do they expect to be able to charge us for it? $1,000.00 a pill? $10,000.00 a pill? I can't afford that. Neither can most of you. Where do they expect to make all their money from? Ron Quote Link to comment Share on other sites More sharing options...
Brew Posted September 30, 2011 Share Posted September 30, 2011 Maybe there might be migraine applications.... Methinks they might just be the types to see to it that family is taken care of first. Quote Link to comment Share on other sites More sharing options...
CH-HELL Posted September 30, 2011 Share Posted September 30, 2011 I was thinking the same thing Ron. I just wish they would hurry and get it made so I can buy some or steal some.J/K or am I. Phil Quote Link to comment Share on other sites More sharing options...
FunGuy Posted October 1, 2011 Share Posted October 1, 2011 Lets use the commonly bantered about number of 0.1% as the (lifetime) incidence rate of Cluster Headache in the general population. The population of the USA is about 312,325,000 people, so that means there are about 312,325 potential clusterheads running around out there just in the USA. How many in the world? I gotta get a bigger calculator. lol Sure, some are in remission, others have 'out grown' theirs, etc etc. How many are "active" in any one year? Who knows. There must be some data out there somewhere, I'll look later.  Gotta keep that in mind, we only have 1400 members, (ch.com has 9000) so even if we count 10000 members between us all that only represents a tiny tiny proportion of the actual cases of CH out there. It really is mind boggling when we add them up and consider just how much suffering IS going on out there!! I have no idea what will cost to make BOL or what it will sell for.  What price do I put on pain free? It's a great question you raised Bonkers, I'd like to hear the input of many more. I just wanted to put the numbers into perspective. FG edit for fat-finger spelling Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 1, 2011 Share Posted October 1, 2011 Maybe there might be migraine applications.... Methinks they might just be the types to see to it that family is taken care of first. This is what I'm thinking. On both accounts. Plus, think of how they can market it for CH. Who else can say, flat out, we've got a viable treatment that may put patients into remission? There's no other drug on the market that can say that. Oh, there are prevents... But prevents don't have the chance to end your cycle. There are abortives... but abortives don't have the change to end our cycle either. On top of that, Insurance might want to look at how much it costs to treat a CH customer through their cycle. The doctor visits. The different drugs. The ER visits. And the fact that, I dunno, they will keep more people alive with it... You can't make money off of a dead person. Just my thoughts on it. Mystina Quote Link to comment Share on other sites More sharing options...
1961mom Posted October 1, 2011 Share Posted October 1, 2011 As I understood Ari (speaker at conference & CEO of Entheogens) BOL would be just one of the many entheogen (from wiki, in the strict sense, is a psychoactive substance used in a religious, shamanic, or spiritual context) type treatments...others he mentioned were 1. Cannabinoid (?) treating Skleraderma 2. MDMA treatment for Lymphoma & Parkinson's Disease 3. Biologic Genetic Treatments 4. Addiction Breaking Treatments I think they understand the "limited" customer base per se with CH & BOL. I got the impression they want to keep it that way (at least until it's approved to go to market) then be able to do some gentle off-label marketing of their own. Could be a very smart move in speeding up the process. BOL becomes one of many entheogen treatments for a group of suffering folks who aren't considered a valuable investment for mainstream or big pharma. If you have "enough" groups who are suffering and can be helped by any number of entheogens you have a "niche"..... AND THEN YOU TAKE OVER THE WORLD, pinkie!!!!! ;D Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 1, 2011 Share Posted October 1, 2011 Since FG requests more input, I'll add my limited perspective. Just guessing and conjecturing about things some others know much more about. Hopefully, one or more of those others will post something here that makes wading through my guessing unnecessary. I do know something about what's involved in obtaining funding for drug testing, having observed it first-hand with a drug that will soon be famous, but which has taken seven years to get from discovery to final-stage clinical testing. Pharmaceutical companies are not philanthropists, and there are hundreds or thousands of discoveries out there that could turn out to be goldmines, so they have lots of places to put their money. They analyze these things from every possible angle; they take their time; and they demand a very high premium for putting their money one place instead of another place. Often it's very close to a take-it-or-leave-it proposition--one that leaves the early "inventors," discoverers, and promoters with practically nothing to show for their efforts. This was true in the case I just mentioned, and also in the case of Gleevec, which I mention below. In both of those cases, the inventors/discoverers/early promoters decided to accept harsh terms because they wanted their miraculous drugs to be available to people who were suffering. I had the impression from what Dr. Halpern said at the conference that the folks at Entheogen might be faced with a similar decision, which as I say would not be surprising, and that they might resolve it in a similarly altruistic way. (But again, I might have been misunderstanding what Dr_J was saying, or inaccurately projecting things I know about into what he was saying.) If, as I understood from the conference, there is a German pharma that is very actively interested in BOL, then I just don't doubt that they've run their numbers and they see that they can make a long-term, sustained profit. You can't do that by selling pills at prices that people can't afford (or could afford but won't pay because the cheaper alternatives are okay with them), and that insurance companies or national health programs won't cover. (There was a cancer drug that cost $10,000/month. The Canadian National Health stopped covering it when it was decided that the life extension wasn't worth the cost.) So, I'm trusting that wiser people than me have figured this out. Which is not to say that it will necessarily be cheap. My best friend has a rare form of leukemia, which 20 years ago was a 6-month death sentence and now is treated 99% successfully by a drug with virtually no side effects. His medicine, Gleevec, is about $3,000/month, and he'll be taking it forever. His insurance covers it, and the company that makes it has a financial-support program for people who can't afford it. Would he mortgage his house, or beg, borrow, or steal to pay for it? Is that a real question? Since CH is not the same kind of death sentence, people will make different financial decisions about BOL. And it has not been clear to me that BOL creates permanent or very-long-term (many years) remission (though I might not have been following Dr. Halpern's presentation at the conference accurately, and I guess there really isn't long-term data since the trial wasn't done that long ago). But let's say, to use Ron's highest numbers, that it's $10K per pill for three pills, or $30K, and you are likely to get five pain-free years from it. I guess the calculus is different for everyone, but I'd find a way, by hook or crook, to come up with that $6K/year for my kid. And if the remission is longer, the amortized cost goes down. With Ron's lower numbers, the decision isn't even a question for me. I realize that $6K/year might be out of reach for some/many people, but insurance should cover some of it, and unless things change, if you live in the US, you will be insured. (You've heard of that terrible, awful Obamacare, with its socialist provision that insurance companies will have to cover pre-existing conditions?) (As a completely wild out-my-butt surmise here -- not that the rest isn't -- I wonder whether episodics will be handicapped in comparison to chronics in terms of insurance coverage for BOL. Seems a lot easier to me to demonstrate in trials that BOL works for people who are chronic, but more difficult to show that convincingly for episodics.) A few farther-afield things . . . A side benefit of BOL in the hands of big pharma is that they would have a huge interest, and the resources, to make more sure that CH is properly diagnosed a whole lot more often, since that's the primary immediate market for BOL. Which means a whole lot fewer people getting teeth pulled, being told they're crazy, being guinea pigs for drugs that don't work, and all the other crap that so many here have been through. . . . . The research I've read says that CH is much more common among Caucasians than among non-Caucasians, so you probably can't project worldwide numbers from US percentages, but there are lots and lots of people in the world with CH. . . . . Once my friend's leukemia-"curing" drug was on the market, it was found pretty quickly to also be very beneficial for another kind of cancer (leukemia being a cancer of the blood). The market went from very small to considerably larger, and prices are coming down. Maybe for BOL it'll be migraine, or maybe once LSD is shown to be a potent and overlooked medicine, all sorts of new uses will be found. . . . . The problem some of us have always had in thinking about general CH advocacy/fundraising ideas has been, Advocacy for what? Better diagnosis? More awareness of oxygen? I always remember Dr. Sewell saying that CH is as common as muscular dystrophy ("Jerry's Kids") and MS. It seems to me that a very compelling fundraising campaign to help people with CH afford their BOL could probably be created. Did anyone notice the other day that TV's "millionaire matchmaker" said she had CH? . . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug 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. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 1, 2011 Author Share Posted October 1, 2011 Gosh... thanks, guys. I hope that everyone who wants to, makes a billion dollars. Swear to God. We're all together here on this planet as human beings. If we, as a species, are unable to put compassion before profit, to help free those of us who suffer the most, what will become of us? Love, Ron Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 1, 2011 Author Share Posted October 1, 2011 Jerry, damn!! You sure do know your stuff. I wish I had had you for a teacher. But then, you'd have needed to have graduated from high school when you were 13. Thanks Ron Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 1, 2011 Share Posted October 1, 2011 I posted this shortly after the Portland conference but it seems appropo to restate it here......as Dr J and I were saying goodbye at the end of the conference he told me that he was absolutely committed to clusterbusters and CH'ers but that what drove his passion was the sufferers in Third World and developing countries.......limited medical resources, clinics, and knowledgeable docs......no O2, no internet access to find us......just a lifetime of suffering with no hope!!! Hard for me to see profit as the primary motive in that statement!! DD Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 1, 2011 Author Share Posted October 1, 2011 I agree, Denny. I didn't mean to suggest that everyone working to develop a drug for us was a profiteer. I also applaud Dr. J and others obviously committed to the cause and their work in 3rd world countries where so many of those who suffer with this horrible affliction have no idea what or why they're suffering and have no access to any modern medical facilities, personnel or medications. CHfather (clearly not the dullest knife in the drawer) made it very clear, in language all of us can understand, how the business side works and why I can't (as yet) go to the pharmacy and get something to help my son. I posted my "Gosh... thanks, guys" post before reading his explanation (we must have been composing at the same time) and probably wouldn't have written what I did if I had. The last few days have been difficult. Michael's getting hit so hard. All the meds are gone. I've been taking narcotics for 7 years but went cold turkey off my methadone last Tuesday so Michael could have the rest of my Rx. It's been a lot easier than I expected. I feel pretty good today. We've been debating going to the ER all day. It hasn't let up for him for several days. Now he's going through withdrawal as well. We got all the way to the highway a little while ago but when I confessed to having 2 pills I'd kept for an extreme emergency he wanted them so we returned home. The next meds for either of us won't be available till next Wednesday. I don't know what we're going to do. Mike's afraid to try to bust while he's getting hit so hard (set and setting, you know), so that's not on the table. I have a medical marijuana card. Weed's been really helpful for me while I've been going through withdrawal (probably at least part of the reason for some of my recent odd posts) and I bought some that I thought might help him sleep and maybe give him a little relief but he hates weed - even the smell makes him nauseous. It didn't help him. We'll probably go to the ER later but I don't know when. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 1, 2011 Share Posted October 1, 2011 *Hugs for Ron* I'm sorry y'all are having such a hard time. I wish there was more I could do other than send good thoughts, wishes, and prayers your way. Hopefully things will ease up so he can bust again. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 2, 2011 Author Share Posted October 2, 2011 I'm trying to convince Mike to take a "manageable" dose some time this evening. A very good suggestion from a friend. I'll let you know. Quote Link to comment Share on other sites More sharing options...
lenny Posted October 2, 2011 Share Posted October 2, 2011 Ron...i am very sorry to hear about Mike...in regards of the weed...if anything it will make it worse,MUCH WORSE..check your P.M.....wishing nothing but the best for both of you Quote Link to comment Share on other sites More sharing options...
Ricardo Posted October 2, 2011 Share Posted October 2, 2011 Man, Do I wish I had some good advice to give...I'll give you what I got. First off, when you're saying "All the meds are gone"--That seems like the first problem, and it's a problem that is coming from the doctors. I would get in contact with them, if they start some bullshit like saying he's gone through his drugs too fast, remind them that that means he was either not given enough drugs or not given the right drugs. It's fine to try out new drugs, but when you are dealing with THE MOST PAINFUL CONDITION KNOWN TO MAN, there is not time or room to dilly dally with waiting out days until you can get more meds. It is unacceptable for them to let him go through days of pain. It really sucks that he might have to go to the ER. I would really push for the Ketamine--not even because I think it will work so well, but because it's so damn safe. One of the few sedatives that does not depress lung function. You can put yourself in a K hole, but you're not going to experience life threatening reactions. And you won't have to wait a week to see if it works. If you could convince a doctor to prescribe it you can pick it up, Michael puts it up his nose and you know within minutes if it's going to work. I would be very surprised if it did not at least take the edge off. Another thought is the Nitrous. I would go grab 5 cans of whipped cream and have Michael suck them down. Huge amounts of ginger--like 20-30 ginger pills. This was recommended by an accupuncturist and it has worked with limited success, but it has definitely seemed to help, especially if I take it with whatever abortive I'm attempting. Seems to help other drugs kick in pretty well, although I seem to get tolerance to it's effect pretty quickly. As far as the weed, I'm betting he's not going to try it again. BUT if he does, I would stay away from the strains that "might help him sleep". Ganja does help me (especially when taking opiates--sometimes it seems like opiates hardly work for me UNLESS I toke some herb with it) but it's always the trippier sativa strains that help me. Sedating, Indica herb seems to many times make my head worse, there are a few strains that I won't go near. The really trippy paranoia inducing herbs are the ones that help me most. My friends all laugh how I get excited when someone tells me they found a strain they couldn't handle cause of the paranoia. What about you Ron? How are you holding up? It's gotta be rough going through withdrawal, dealing with your pain AND going through all the stress with Michael. We're all thinking of you two, keep us posted. -Ricardo Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 4, 2011 Author Share Posted October 4, 2011 Thanks guys. I'm exhausted. 2 trips to the ER in last to days. You all know how much fun that is. They admitted Mike this evening - instead of shooting him up with Dilaudid and sending him out the door like they did yesterday. Might have had something to do with my saying loudly to his ER doc that "my son will commit suicide if you don't get him out of the pain." Now he's got a private room, his own nurse and a neurologist who is really up on CH. He's trying several things I've never heard of. Funny me, thought I'd heard it all. I'll find out everything they try and get his name. I like him. He knew all about psychedelics but hadn't heard of BOL. Gave him our website address. And now to bed. Later. Ron Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 4, 2011 Author Share Posted October 4, 2011 Thanks for all the good info, Ricardo. Will reply tomorrow or next day. Gotta get my kid out of hospital 1st. Ron BTW, weed isn't a trigger for him. Never has been. He just hates how it makes him feel and how it smells. Funny, I've always loved those things. Later. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 4, 2011 Share Posted October 4, 2011 Ron, my heart and prayers are with y'all. I hope this doctor finally has the answers y'all have sought. Mystina Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 4, 2011 Author Share Posted October 4, 2011 I waws just about asleep. Mike called. He's getting ready to go to sleep. Peeeeeacefully. They'd been giving him Dilaudid all day to no effect. Finally got the attention of really good-man-type doc in the ER. Yesterday the Dilaudid took the edge off so hats off to the ER crew. Wonderful folks today too, but for different reasons. Today, I think I met a man (2 men, really) who saw my son's pain and took responsibility for it. First a trauma guy, basketball-tall, who met me dead-on when I told him that my son would comit siucide if he didn't get him out of his pain; that someone here, now, in this hospital had to take responsibility for it. He looked at me for a few seconds [i'm ragged; no shave/bath/sleep for like 3 days; I was wearing dirty shorts/t-shirt/ugly brown Crocs. Honest, don't mean to offend (most of our Country's 3 paychecks short of the street) - but we were street people] and said okay, and turned away. Not long after, a really nice, hip, obvious-genius, neuro rolls in who knows a lot about CH. Didn't know about BOL but knew stuff to try that I hadn't heard of. He took charge of my son's care. Cool guys. 'Bout effin time. Ron Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted October 4, 2011 Share Posted October 4, 2011 You are a good dad. Hang in there buddy, and tell Michael that we are praying for him here. Please keep us apprised. BIG (cyber) hugs! Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 4, 2011 Share Posted October 4, 2011 I waws just about asleep. Mike called. He's getting ready to go to sleep. Peeeeeacefully. They'd been giving him Dilaudid all day to no effect. Finally got the attention of really good-man-type doc in the ER. Yesterday the Dilaudid took the edge off so hats off to the ER crew. Wonderful folks today too, but for different reasons. Today, I think I met a man (2 men, really) who saw my son's pain and took responsibility for it. First a trauma guy, basketball-tall, who met me dead-on when I told him that my son would comit siucide if he didn't get him out of his pain; that someone here, now, in this hospital had to take responsibility for it. He looked at me for a few seconds [i'm ragged; no shave/bath/sleep for like 3 days; I was wearing dirty shorts/t-shirt/ugly brown Crocs. Honest, don't mean to offend (most of our Country's 3 paychecks short of the street) - but we were street people] and said okay, and turned away. Not long after, a really nice, hip, obvious-genius, neuro rolls in who knows a lot about CH. Didn't know about BOL but knew stuff to try that I hadn't heard of. He took charge of my son's care. Cool guys. 'Bout effin time. Ron That brought tears to my eyes. I'm so thankful that something good FINALLY happened for y'all. Like she said, you're a wonderful Dad! *hugs* Mystina Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 4, 2011 Author Share Posted October 4, 2011 You guys bring tears to mine. Ron Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 5, 2011 Author Share Posted October 5, 2011 Too tired to type more than a note, Mike's still in a lotta pain, but he's finally getting the full-monty. He's in a private room on a floor where they can very carefully monitor all his vital stuff. He's hooked up to so many wires and monitors and drips - I'll try to get a picture. There are now several local (I live in San Diego, la dee da) neuros, including my neuro and my pain spc who are discussing what to do next. They're mystified that he can take the amount of narcotics they've given him and it doesn't even touch it. He was getting 100 mg of methadone 2x/day, which they dropped to 1x/day. Also, 2 mg of dilaudid every hour. It doesn't touch his pain! They're also titring a warfarin drip, currently at INR 1.1. - Hi, Christy! He's been given depakone (I think one of the things that didn't work). He's on an ergotamine drip. They did the thing with the lidocaine-soaked cotton swab up his CH-side nostril (they wanted cocaine but too late for a compounding pharmacist - Damn!). Didn't work. I'm really glad that there're now several really good men collaborating with each other and I'm sure on the phone to other guys wherever about how to fix my kid's HA's. When I left him tonight he was writhing in agony. I really think these guys are committed. Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted October 5, 2011 Share Posted October 5, 2011 INR 1.1. - Hi, Christy! Hi buddy! I'm here. XOXO Keep a close eye on those medical people, and keep us posted. Quote Link to comment Share on other sites More sharing options...
lenny Posted October 5, 2011 Share Posted October 5, 2011 :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(.....Lenny Quote Link to comment Share on other sites More sharing options...
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