Biowhats?

BioSimilars and RAD treatment

 

Part of "getting better" for me has involved learning more about RAD.  I am trying to take the time to read about treatments, research, etc.  And I have been learning a ton of stuff.  I found the following article link on facebook Flordia bio similar article.

 

I read, then read some more.  At first I was livid.  Then I read some more plus the sidebar in the article.  And it got me thinking, what are the other 14 states?  Could Georgia be one of them?  So of course, the little journalist in me began digging.  And digging.

 

So far I've learned that Virginia passed a bill allowing biosimilars, but with a lot of restrictions.  Also  (gasp!) California appears to be heading in the same direction. It looks like FL and Oklahoma will pass a bill proposed by big pharma lobby.  Other states with some type of pending legislation are Illinois, Mississippi, Indiana, Oregon, Pennsylvania, and I'm sure others. 

 

I can't find Georgia on that list, but I'm sending out an email to my state representative to ask for any updates.  I also want him to know my position on biosimilars for future treatment.  I am going to continue reading and researching on this area and will try to update any new info later.  Also go to GaBi to read some big pharma reaction. 

 

My intent has never been to write about the technical aspect of RAD treatment, just my journey and how this chronic illness has affected my entire life and my family.  And that is still my intended direction.  However, the idea that more affordable treatment is out there and our government in the interest of big pharma would block patient access is just outrageous.

 

Here is the estimated cost of RAD treatments...stew on these dollars for a while.

 

 

 

Nothing like the good ole FDA screwing patients over. My biologic treatment would cost me $2800 per month. When I had insurance, I had to go through a course of several drugs before it would even approve treatment. So it has taken two years and four months for me to get to the point of being able to take a biologic.

During that time I've "lost" my right wrist, both knees mainly the left one, my hips and now my lower back. While all this damn time there have been cheaper/similar drugs available. But not in the good ole US of A. 

 

So where do we go from here?  Maybe a European vacation for the Thorpes, all tax deductible? That would be great, but not likely, even though this is highly possible for the wealthy.  Plus I'm pretty sure I'd be the one to get caught in customs trying to smuggle my meds back into the country.

 

I guess the answer, at least for me, is more involvement with the statewide RAD group and letting folks in the ATL on the hill know that this is more than a big pharma lobbyist issue.  (Ay Tee El...just trying to help out the northerners.) And I want my representatives to know that RAD patients have faces and families and lives.  And we need access to affordable treatment.