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.