Members in the US may be interested in this group, they are working on policy changes to control big Pharma pricing and I like the language, I've been in touch to say so:
We have to break the monopoly pricing power of the drug corporations and demand transparency from pharmacy benefit managers who run drug insurance programs.
The drug corporations try to scare us. It’s like extortion. They say that if we don’t pay their outrageous prices, they won’t develop new drugs. But the fact is that they are making so much money and wasting so much on marketing and advertising, we can have both innovation and lower prescription drug prices. And then we need to stop the secret deals by pharmacy benefit managers—the corporations that run prescription drug insurance programs—so we can be sure patients are being protected."
what they said. As with everything, what really helps a group like this is patient stories and they are calling for those, on FB or website www.patientsforaffordabledrugs.org/share-your-story/
because when they make a submission, it is human stories that committees can get their head around, not statistics. When we tell that, Gilead etc have nowhere to hide. It is probably fine to do your story with a pseudonym, I spoke to them about stigma, if you ask about that I'm sure it can be done. They have a petition going at the moment, and had a good policy win in California this week.
Patients for Affordable Drugs
Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716