Reckitt-Benckiser, the first (but surely not last) manufacturer of orally dissolvable buprenorphine sold under the brand names Suboxone and Subutex, has been aggressively pushing doctors to refer addicts taking buprenorphine into a program called ‘Here to Help’ that they promote as something that will keep patients compliant with buprenorphine maintenance. Regular readers of STZ know that I have not been impressed by Reckitt-Benckiser over the years, and so I’m not going to just jump on the ‘here to help’ bandwagon unless I see value in the program for my patients. I have referred SOME patients to the program, but the feedback I have received has not been positive.  Patients have told me that they receive confusing or conflicting information, or that the person on the phone seemed ‘scripted’ and not responsive to the person’s specific needs, or that the information they were given assumed a knowledge level below what the patients already had.
Why am I unhappy with R-B, you ask? If you go on the web site of any pharmaceutical company– from the smallest, like Dey Pharmaceuticals, distributor of the MAOI patch called Emsam, to the large companies such as Pfizer– you will find a section with procedures and applications for grant support for unrestricted educational programs, investigator-initiated trials, or other purposes. Little Dey Pharma has released tens of millions of dollars for community educational projects. Pfizer provides hundreds of millions of dollars for similar purposes. But try to find a similar web site for Reckitt-Benckiser (the Suboxone division) — let alone any contact info for grant applications! I have tried for several years to simply get the name of a person to speak to about financial support to expand my efforts, and the result is always the same? I will receive a phone number of a low-level sales manager who tells me ‘he (she) will look into it and get back to me.’ I’m still waiting.  I would like to apply for assistance for what I do best– educate addicts about opiate dependence, and educate physicians about how addicts feel about treatment and about what their doctors are missing. I would also like to create a program to address the internalized shame that most addicts on buprenorphine continue to struggle with, no matter how long they are away from active using. I won’t go into specifics here, but there are so many things that could be done—that SHOULD be done. I know some of the things the company spends money on; I resent that they do not see the value in my efforts. And I am annoyed that they don’t even have an application process that would allow them to at least pretend that they are interested!
There are so many ways to become involved with buprenorphine; there are organizations like SAMHSA and CSAT and others that provide education and research into the use of buprenorphine. I was a ‘mentor’ for physicians with new buprenorphine practices for a short time and I have considered becoming active in SAMHSA or the other agencies. But if find those types of organizations to be inefficient compared to what I can do speaking to addicts directly, through the blog or forum. I also know where my strengths lie, and where they don’t. I do not do well as a ‘consensus builder’, for example—such people must be careful about what they say, whereas I tend to say what I am thinking. If a meeting is running long because someone is repeating how much he/she wants to do the right thing for all of these poor addicts, I am the person who will stand up and say ‘y’know, that is a given—and this is all a massive waste of time.’ And then for some reason I won’t get invited back again! Those meetings are not for me. My favorite recovery ‘saying’ is ‘a good man knows his limitations’—and that is one of my limitations. My strength comes from the fact that I understand how opiate addicts feel, and how they think. I always seem to know what an opiate addict is going to say next. On the other hand, I never have any idea what a government bureaucrat is going to say, or what I should say when speaking to one!
I suspect that R-B would like me to get on board the Here to Help message. But I have reservations about the program. I suspect, for example, that it is primarily being supported by R-B in the hopes of somehow using it to maintain their ‘brand’ over buprenorphine. If that is their intention, good luck to them– it is going to need some awesome content to keep people buying Suboxone for $8 when generic Subutex is selling for $2.55 at Walgreens!
Today I received a brochure describing the results of a ‘study’ that claims that patients in the ‘Here to Help’ program had improved compliance as measured by maintaining appropriate use of prescribed buprenorphine. As some of you may know I got my PhD in Neurochemistry doing basic science research and I have served as a Peer Reviewer for Academic Psychiatry for a number of years, so I know how to evaluate whether a study is ‘sound’ or is instead misleading. Even in the material that I received today, R-B refers to the findings as coming from a ‘quasi-study design’—so they at least apparently recognize that the findings are biased. I participated in the data collection for the study, actually;  those of us who participated would invite new patients to participate, and the patients who accepted the invitations would then be randomized so that one group would get the ‘here to help’ info and the other group would not. R-B found that the here to help group had better compliance and fewer drop-outs than the other group. One problem I have is that I don’t know what they did for the ‘non-study’ group. For example if they told the non-here to help group ‘Suboxone will kill you if you keep taking it’, then the difference in compliance would be meaningless! I’m sure they didn’t say that, but what DID they say?
Second, there was no way to ‘blind’ the study on either side—both the addict and the phone person knew which group the study person was in. We like studies to be ‘double-blind’, and this one was not even single-blind.
Finally, participation in the study was voluntary, and we don’t know anything about the factors that caused some people to enroll and others to avoid enrolling. Let me explain how that bias could have affected the results. Patients were paid to participate in the study, so I would guess that the addicts who were unemployed were more likely to participate. Likewise, the addicts who were, say, executives from a high-profile company or physicians or attorneys would be less likely to participate, as they would be more concerned about disclosure of their status as addicts. So at best, the ‘here to help’ study looked at a specific subset of addicts—those who were interested in making $100 by talking on the phone for a half hour. Would the here to help program be of any value for a person who is still working, making good money, who has not suffered many consequences yet? We don’t know.
So… I am interested in your feedback. Have any of you used the ‘Here to Help’ program? If so, what do you think about it? If you have NOT used it, why not? Did your doc tell you about it? Leave your answers in the comments section—you do NOT have to leave a real name, and I will not use your e-mail for anything (it does not get displayed in your comment either). Your comment won’t show up immediately; for spam purposes I will approve the messages as I receive them. But here is your chance to let RB how you feel about that program—or about anything else, for that matter. Will you use the generic, or stick with the brand? Why or why not? Leave your comments and I will be sure to send them at least as far up the chain as I can reach!
Finally, I continue to ask for your support. I note that our forum is over 1500 registered members strong and growing; the older forum supported by R-B has about 200 registered members. You must know that your presence just warms my heart! If you have some money to spare and want to join me in my efforts (a pipe-dream of mine!), let me know and we will truly do some good things out there. Lest anyone thinks I’m getting rich from this, I have received 3 donations of $50 over the past few years, and a few of $5-$10. That’s it. And that’s fine—I just don’t want y’all to think I’m cleaning up with this blog. Maybe I should start posting each donation—leave a comment if you have an opinion on that as well! If I help you out or if you care to support my typing away on the blog, or help with the self-publishing of my eventual ‘big book,’ a small financial donation is always greatly appreciated.
The main thing you can do to support me is to spread the word. Send my links to anyone you know who takes buprenorphine– links for the blog, and for the forum too. Better yet, print out the link and give it to your doctor and tell him that you like it (if you do!).
Got all that? I suppose I could have just typed ‘what do you all think about the here to help program’ and gone to bed an hour ago! As always, thanks for reading. And I wish you all the best at keeping the scourge at bay.
JJ
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9 Comments
kdoumlele · December 20, 2009 at 4:21 am
hmm, where to start: this program is the reason i stopped seeing my sub doc. but here’s some background first.
i began taking suboxone in october 2007. it has absolutely been a life saver for me to say the least. for 7 years i dealt with heroin/pain killer addiction that i truly thought i would never be free of. but suboxone has changed all that. i’m a loving and commited mom, i pay my bills, just bought a new car, and i’ve held down a good, secure job for almost 2 years now because of suboxone. other than the small nuisance of having to shell over nearly $200 per month for it (insurance refuses to cover sub) i couldn’t be happier now.
now to the point: a couple months ago my sub doc handed me the “here to help” card and explained that it would help me stay clean. in the back of my mind i was thinking “i’ve never been cleaner and never failed a drug test, i have a good, solid support plan and go to NA meetings once or twice a week…is that not enough for you?” but nevertheless i thanked him and took the card. i did check out “here to help” online but decided the program wasn’t one i felt i needed at this point in my treatment considering i had everything in place support-wise. at my following appointment with my sub doc, he asked me if i signed up for the program and i told him what i had decided. he then frowned at me and said that it was IMPERATIVE that i sign up for it and until then he wasn’t going to write my vyvanse prescription. (i have been taking vyvanse for the same amount of time as the sub) needless to say, i was speechless. can my doc really FORCE me to comply with a program i feel is unneccesary and(to be honest)ridiculous? and now that i read that the purpose of the program may be to keep sub from going generic then i KNOW i want no parts of it! i struggle to afford it as is and look forward to the day it becomes generic!
so anywho, i am searching frantically for another sub doc in my area before my last script runs out, but is this something i will encounter with all of them? if so, then i hope i’m not doomed after all this time and hard work to remain clean and sober. some “help” that is!
SuboxDoc · December 23, 2009 at 10:52 pm
Wow— when I hear that, I think ‘thank heavens for generics!’– not the response that R-B wants from their efforts, I would think! Thanks for sharing your experience, and I encourage others to do the same so that I can forward them without your names.
Anyone have a positive experience?
bones · December 21, 2009 at 6:52 am
I have been tapering off suboxone for a little of over 2 years now. I am taking 1/8 of a 2mg subutex at the moment and I am completely frustrated that I have not been able to stop this. I do believe my doc is frustrated as well although he has been very patient. In an effort to aid me he recommended that I use the here-to-help hotline. Pretty much insisted on it. I was very skeptical. I had good reason to be skeptical. It is completely lame! It is scripted. If I would interupt my person would backtrack a little and repeat word for word what she had said before I was so rude. Responses to most of my questions or comments was “You should talk to your doctor about that.” I got the feeling that she was watched over closely somehow. She would seem to start saying something and then stop and say you should talk to your doctor about that. No help whatsoever!
jaym · December 26, 2009 at 12:03 am
Yes, I enrolled in HTH after my doc, a truly wonderful guy, suggested I try it. I don’t want to believe he has any other motives. However I did enroll and I agree with most of what has already been said. For anyone who has read and researched on the internet, it is old or useless information. Often I know more than they do about suboxone. They are scripted, and every call is recorded. I can often get my guy off track (I specifically requested a male, which for some reason was like asking to move a mountain) by talking about the pharmokenetics or argue about whether sub is an opiate (of course it is). So no more HTH. If they happen to catch me at home I’ll talk to them but not for long. My doc asked me about it and I told him the same thing, he didn’t seem to care and didn’t mention it again.
I was a bit taken aback by your comment about only receiving a few donations. I donated 30 a few weeks ago (maybe a couple months) ago via Pay Pal for generously answering my questions.
I know you like newer research so here is one I found. It is about inducing withdrawal with naltrexone then rescuing with sub. My question is, obviously the sub has a higher affinity for the receptors than naltrexone for the rescue to work, but would the same thing work with oxycontin followed by naltrexone followed by a sub rescue?
http://www.psychiatrymmc.com/buprenorphine-rescue-from-naltrexone-induced-opioid-withdrawal-during-relatively-rapid-detoxification-from-high-dose-methadone-a-novel-approach/
Thanks
sweetpea · December 27, 2009 at 9:55 pm
Well…I have been addicted to heroin/painkillers for the past 8 years…ever since I was 12. I’ve been to rehab…which worked for awhile…but mostly I believe it was the 12 step meetings that kept me sober. Of course though, I go back to using. So about 3 years post rehab, I hear about suboxone and think to myself ‘hey this might work, let’s give it a try!’ I call a doctor and it was like bam! easy as one two three. you’re in the door with your first phone call. Seemed to easy to me, I don’t know about it though. So I go to the first appointment and she says to me, “You must take the pills correctly, and call the number on the back of this Here to Help card TONIGHT!” So it seemed fishy to me. But I listened, because if not I wasn’t allowed to be in her program. Also, if I don’t bring my here to help book to my appointment EVERY time. I won’t be allowed to get my medication. I am not happy at all, with HTH. I only muddle through it because I have to. The HTH program is ridiculous, and it’s also ridiculous that my doctor is so worried about the money that she refuses to treat patients if they don’t comply with her rule on participating in the HTH program. These people do absolutely no good talking to me on the phone about things that I ALREADY KNOW for twenty minutes a week. It poses absolutely no benefit to me or my recovery, except for the simple fact that I have to do it. They talk to me about a goal, how I can achieve it, and anything that might be a danger to my recovery in the upcoming week. Then they repeat the exact same things that they say week after week. Just randomn statements about suboxone in general and then like a safety statement or something. I completely agree with everyone else. I go to a twelve step meeting, where the people aren’t paid to give advice or anything and I get WAYYYY more out of that than I every will with HTH. The HTH program is nothing but a bunch of robots talking over the phone that are supposedly called “care coaches.” It sure doesn’t seem like they care when they barely listen and just say “okay now i’ll tell you a little bit about this….” then continue reading the next thing they are required to say! One could almost say that they were going to go postal and shoot someone, and I’m not sure if they would even CARE, they would just keep on reading. This pharmaceutical company could save a lot of money and just have an automated system that talks to the patients because thats basically what this care coach stuff is anyway. Any and EVERY question I have ever asked my HTH care coach, the answer has been, “I’m not sure… maybe you should talk with your doctor about that.” So what’s the point!? It’s a waste of my time and their money! But I’ve spoken with someone else who goes to my same doctor…and they called the first day of their treatment to the HTH number. HTH sent this person their book and has never contacted him since. He must have slipped through the cracks and someone forgot about him. But he has no complaints. The doctor never asks about the program or how it is going. She just makes sure her patients have their book, and she flips through it a little bit just to see if you’re writing in it. She (the doctor) refuses to go through any insurance for any of her patients that are on the program. She charges 100 dollars per visit (which in the beginning, one has to go every two weeks). Plus pay for the prescription. It’s too much! When I read that subutex is much cheaper, I thought…why am I not on that?! Oh and the urine samples that one is randomnly required to give cost the patient $99 a piece! It’s all a money gimmick. The next time I go I am without a doubt, asking about being switched to subutex! But I’m sure, I’ll be turned down…hmmm. But what can I do about it?! I feel as though it’s hopeless. But I’m glad to see I’m not the only one who finds it pointless.
sumiink · December 29, 2009 at 5:11 pm
I recently went off Suboxone after 4 months on and tapering off a (n average) 8 mg dose. I had a good, supportive doctor, who recommended calling HTH. I registered on their website first, and eventually called and got assigned to one of their phone counselors. I talked to her once; the only question I had was about withdrawal from Suboxone, and she said there would be none if I tapered according to the doctor’s directions (wrong). After playing phone tag with Here to Help for a few weeks, I stopped calling.
One of the reasons I think my doctor wanted me to be in touch with them was something about getting free Sub prescriptions if I wanted to remain on a long-term maintenance dosage (I didn’t). I figured it couldn’t hurt to have all the support I could get, but I’ve had success with 12-step meetings and work, and kept busy in other ways. My opinion is that Here to Help could be a small supplement to the rest of an addict’s treatment, but not helpful on its own.
myopinion · January 29, 2010 at 6:32 am
It seem short-sighted to dismiss the benefits of any disease management or health management program. As treatment providers we are unable to predict who will benefit and who will not. Patients I have worked with on Suboxone have been reluctant to participate, but those who did, said they liked the program. Being suspect of R-B’s motives for the creation of the program does not mean it is not effective. Also, to look at only the info they present is to ignore the mountain of evidence that supports these types of programs in other chronic disease states such as asthma, diabetes, COPD, etc. We ARE trying to have addiction accepted as a real disease state aren’t we? Would you rather have them not offer a support program? To call into question their motives would be to call into question all companies that offer any good or service. Do you think Wal-Mart is offering goods to help you out and not for profit? Are Amazon and Google just trying to make the world a better place with no profit motive…no value motive to maintain your loyalty to their services? Who criticizes a product or company where an effort to increase VALUE is a bad thing? I would recommend people check their own biases and how they might be a factor in maintaining a attitude of skepticism, distrust and negativity in your own life or recovery.
As a healthcare provider who also has family in the pharmaceutical industry I see the other side too. Generics are cheaper, but do you think the generic companies are making these drugs to help you out? No, they make them to make money, and in fact, make bigger marginal profits than the original companies that spent the time, effort, money and risk to develop them. Do you think Walgreens, CVS, etc. offers generics so aggressively to help you out? No, they do it, again, because they have bigger profit margins. Did you know that most retail pharmacy managers get bonuses based on profit margin, so they have an incentive to switch you to the generic? Not always a focus on your health or what’s best for you.
I take generics too when appropriate, but remember this; if you think real pharmaceutical companies will continue to research and develop drugs for free, you are mistaken. Generic companies do not create new drugs, so be warned about taking the development of new treatments like Suboxone for granted; it may not always happen. Has anyone considered that R-B might be working on new drugs for alcohol, benzos, barbituates, cocaine, meth, etc.? Where do you think the money for that research and development comes from? Not from the generic companies.
SuboxDoc · January 29, 2010 at 8:27 am
You are preaching to the choir on ‘profit motive’– I am pure capitalist on the idea of making money from one’s discoveries, and I am aware, as are you, of the cost of drug development. To be fair, though, R-B did not ‘invent’ buprenorphine; it had been around for 30 years, and was being used for opiate dependence already in an awkward way (using liquid temgesic). Someone at R-B, formerly a floor cleaning product company in the UK, had the foresight to see the profits available in creating a dissolvable form. They have had that product for a decade now, with FDA approval for 7 years— and they have made plenty of money. They have done some good things, and some bad things. They are the only pharmaceutical company I know, for example, that limits patient participation to TWO patients per doctor– up to a generous 4 patients if you treat 100. That is pretty pathetic; Astra Zeneca, for example, has no such restriction on the number of my patients on Seroquel, which is a much more complicated medication than buprenorphine that took a lot longer to develop!
Your comments about pharmacies are not relevant to this discussion so I won’t say much– accept that in my state, as in many others, pharmacies are required by law to use generic in all cases where a generic is available– unless the doctor specifically writes otherwise.
As for HTH specifically, I think that RB should make up their minds over what they do. If they want to make pharmaceuticals, then spend time making pharmaceuticals, and get some help from the ‘big guys’ so that it doesn’t take 7 years to educate the physician community about the drug! There are still large areas of the country where doctors have no idea what ‘suboxone’ is; in other areas, people who take suboxone are told by even the prescribing doc that ‘you can only take it for 4 weeks’. I have such fools in the county treatment center here in Fond du Lac– the psychiatrists see buprenorphine as a short-term bridge. I don’t know what they THINK they are bridging to, but in reality it is only a bridge to further use, the way they use it. I have been around for three years, one of their ‘advocates’– they used me a few times to talk to one or two docs, when they should have been holding lectures every week at every grand rounds in the state. Their excuse is that they had limited resources…. but they could have done what other companies do, i.e.pair up with another company to roll out the product in a way that the physician community can quickly learn about the medication. The efforts they are spending on HTH are clearly needed elsewhere. And going by the comments about HTH, it does not sound like the program is the answer to the counseling needs of addicts.
My main frustration comes from the total lack of access to anyone at RB beyond their marketing people. For three years I have asked, or waited ‘on hold’ to ask, about applying for an unrestricted grant to fund educational efforts about buprenorphine. For every other company I know of as a psychiatrist, the application is on the web site; I know that because as Chief Resident in psychiatry residency I applied for and received such funding for our educational retreat each year. RB has no such web site, and for some reason I cannot even find a person who will discuss the issue. And yet there are sites here and there with their brand prominently displayed that disclose being funded by RB. What’s THAT all about?
Kevin5115 · September 26, 2010 at 6:18 pm
my problem with this is I can’t find a doctor anywhere in MN. I got a list of DR.s that supposedly take patients. I have 1 out of 30 that might be a possibility and that is a 9 month wait. About a third of the numbers I got are either disconnected or don’t know what I’m talking about. What gives? I now have a NABBIT ID number that you use when you call a number, and than they tell you if a DR. has an opening. What a farce, as far as I’m concerned this program is a joke.