Response for Lisa

recently got a message from one of my absolutely favorite bloggers, Lisa Emrich from Brass & Ivory.  She was asking a few people for their reactions to the fact that this coming Thursday and Friday, the FDA will be having a public hearing in regards to how pharmaceutical companies can use the web and other social-media to market directly to the consumer.   In honesty Lisa, you are so much smarter than me, but I do have some thoughts to just put out there.. 🙂

This strikes me as being a very weighted subject,  and really just brings up a lot of questions for me.

My opinion of pharma companies in practice is pretty low.  Ordinarily the optimist, I have to admit that in general I view the drug companies as being closer to that of a leech than an organization who’s inspiration is to help.  The science and any real research going on in the backend, has its use, and for some things, I think its viable and important, but that is not the part of the drug companies that we deal with, and that is not the part of the drug companies that this event is highlighting or discussing.

In the back room somewhere, I can believe that there may be an absolute possibility that there indeed is a select few people who are there because they are interested in helping.  I don’t in my heart believe that there are that many of them, and definitely not ones in the positions that would be working in “marketing” whose core purpose… well.. is making money is really the end goal.  I may be considered “sick” and I may “need help”, but I’m not positive that they can do anything at all for me, except of course offer pretty words and the idea that if I don’t buy into what they are presenting, that I’m dooming myself to have no other option but to get irrevocably worse,  but if I pay them huge sums, that it “might” not be so bad.

It has always frustrated me in that… How can they possibly think they are on the path of finding the cure when there is no identified root.  The cause of MS still a mystery. I have to agree with Diane’s comment in that respect.  Still a newbie to this disease,  nearing my two year anniversary at being diagnosed. In that time the only constant piece of information I’ve found is that MS is fluid and ever-changing.  I’ve actually found some odd sort of peace in knowing that even if I’m miserable today, it in all truth doesn’t mean I’ll be miserable tomorrow, nor that it means I’m necessarily  “getting worse”.   I really hate the negativity I’m spewing, but I am uncertain as to what benefit it is for them to come up with a cure?  A cure would insinuate that that my “issues” would be all fixed, and therefore at some point, if it was a true cure, I would no longer need their services.

All that said, I really believe that the most complete information on these drugs should definitely be readily available in some format for people  (like myself) who doesn’t necessarily see eye to eye with their neurologists. To give us the option to try and make some informed decisions about our own care.  Should it be the Drug companies providing this information? –  I really don’t think so, and of all departments to do so.., definitely not “PR”  or “Marketing”. No, if they really want to have a progressive event, lets talk to the brains in the backroom, and have them offer information on real study’s that weren’t paid for in part by their own companies.

Then there is also the issue of people who do not look into their care, who just want something that will “make them feel better”, they are going to be prime for the picking by these companies campaigns. There are people, who will just “doctor hop” until they find one that prescribes what they’ve been told they “need”.

Thats all I can offer at the time being.

When the party is over, and everyone’s gone home, I think they are still just looking for another way to make even more money off of people.