White House Petition

The language of this was carefully crafted to not alienate any of the groups we need to make progress and affect change. We are aware of the grammar and spelling errors, but unfortunately these could not be corrected once a single signature had been obtained. 100K signatures is not realistic but a few thousand will make some noise.

 

http://wh.gov/i0DOk

I understand what the words mean but what exactly is the petition asking to be changed?  I mean, who is it aimed at and what are they being asked to do?

We kept it broad to engage more people. There was a character restriction that made explaining in detail almost impossible. The first step is to be heard (by the signatures) and the second step is to be more focus in our request. I also believe discussion through boards like this will help us craft those messages.

 

- Drug studies must include a cessation period commensurate with the drugs known risk (right now some don't even test that)

 

- More controls on drug administration and dispensary. My wife had a to fill out a legal notice about pregnancy risk to take Accutane and you can get this stuff without a blink

 

- More consistent warning labels. Pharmacies have all types of different warning on these drugs. I have filled at 7 pharmacies and only two had the same warning. "May intensify the affects of alcohol" which was almost a serving suggestion, and not a warning.

 

- Those labels should (stickers right on top) should disclose the risk of dependence. This should not be hidden in a pamphlet.

 

- The FDA should be required to do continuous follow up studies on drugs beyond the "treatment" window. Months, years down the road to see if the drug has helped or harmed.

 

- PCP should not be allowed to prescribe the drug beyond a week or two without permission from a specialist for an already dependent patient. Otherwise, they have no business prescribing the drugs long term as they they lack awareness of the potential dangers. A lot of us got into this because of our general doctor.

 

- There is a lot more. But before we go before the "decision makers"  I want to get feedback and more ideas so this thing is polished as hell. The more articulate, the more evidence and the more people that suffer from the same symptoms under the same circumstances is what will make doctors consider reform. I know previous attempts at lawsuits have been largely unsuccessful outside of med mal for a specific doctor, but if we want to protect people down the line, this is a promising avenue.

 

www.HeatherAshtonsyndrome.org

There is a copy of this made for Great Britain. Posted on "Chewing the Fat".  You might get more action there. Also, they posted the petition on Facebook. To get thousands of sigs you need it posted all over the place.

 

I signed. Thanks for doing this.