You live in a capitalistic society. Can you name any commercial company that doesn't expect a return on their investment? This forum would not exist if patients did not have computers and I can guarantee you a profit was made for every computer purchased. Too many people have fallen for the big bad Pharma schtick promoted by medicalization theorists - the same theorists who claim fibromyalgia and CFS are the medicalization of misery. Be careful whose agenda you adopt.
As well, different meds have different efficacy for different individuals. It is unfortunate if they did not work for you, but you are not everyone nor is everyone you.
Another issue with meds that is rarely noted is that at least for patients who have HHV-6A, clinicians and researchers have shown that this virus, and possibly others, leave patients very intolerant of most drugs. The difficulty is with the virus in such cases.
I'm not adopting any agenda or shtick, please don't put words in my mouth. It appears in your mind I'm ranting about a misguided cause which obviously touched a nerve.
Let's stick to the capitalism then, shall we.
I clearly said that big-pharma is a double edged sword. We need them but clinical studies are grossly slanted toward drugs with the most profit potential and drug reps successfully push them. Yes it's capitalism and it not driven by shareholders who's primary concerns are to improve patients health.
As Cort correctly pointed out drugs are blunt instruments and I would argue the the three approved fibro meds are extraordinarily so. I'm not going strictly by my own experience and I'll cite specifics if you like, although that really wasn't my major point.
Current anti-virals don't work well and we had a really good thread about the fact that there is some scientific evidence until we attack a combination of viruses in a given person we won't make significant headway. The anti-viral cocktails need to address things like HHV-6 and XMRV or other MuLVs.
Back to the capitalism.
In your computer example there is a clear benefit to the person who buys it and it's going to work as advertised comparably for each person (within reason) - not even close for meds. With a computer we know what we're getting, the benefits are obvious. We also can return it, resell it or get a warranty repair if we have problems. When we spend more money we'll get tangible additional benefits and there are many comparable competing choices keeping pricing in check. Profit margins are very thin with computers and pretty much all consumer goods. Are you going to make that claim the kinds of medications we're talking about here? And ignoring controversial issues of something like radiation, the product isn't going to harm us or anything else it touches, again not so with meds.
I will grant meds have much greater R&D but they still manage to keep profits very high.
So with a computer:
- It provides an obvious and universal benefit to the consumer.
- Has very direct competition which keep profit margins low.
- Doesn't cause it's user's harm.
- And in the end it's not absolutely necessary, although it's a real lifeline for many of us in practicality. One might argue it's better medicine than anything else available right now, but that's another conversation.
- They provide a benefit at a level above placebo in most patients studied. In our illness this is particularity hit or miss.
- Until patents expire the profits are enormous. At that point they frequently tack on a marginal tweak and start selling the "new" med, which maintains huge profit margins.
- Especially for an illnesses (FMS) with few approved medications there are no comparable competitors. ARVs (except AZT?) and other new meds are/will be extremely expensive.
- They have serious side effects that can preclude their use, even for a patient who greatly needs the potential benefit.
- They have a captive audience. We need to get better. We'll take them regardless of the cost (if we can afford them or get assistance) and take chances with our health, it's already happening. **And I don't blame people for trying.**
So is it capitalism at work? You bet.
Are there benefits for people fighting for their quality of life, if not life itself? Sure. Will I be pushing my doc for any marginal gain. Yep. I would like to live to see my kids graduate from high school. My odds are long on meeting my grandkids, let along knowing them. This is where capitalism and humanity have very conflicting goals.
It's reality but I don't have to like it. It don't have to be a conspiracy to suck.
Is it the only game in town, it's seriously flawed and we absolutely need it.