Orphan Diseases and USP drug formulary

[Guest guest]

Here is a great article on orphan diseases. We need more emphasis on

these diseases (CMT is one) in the public dialog.

http://www.medicalnewstoday.com/medicalnews.php?newsid=46288.

As of July 1, I am seeking disability and will have time to work on

this. I believe that anyone with an orphan disease should have full

access to the complete USP drug formulary regardless of how the drug

is labeled. We with orphan diseases need symptomatic relief regardless

of how a drug is labeled.

I was denied Provigil which would have allowed me to continue working.

The argument was that Provigil off label for fatigue in CMT.

Interesting that I am covered for Ritalin (an amphetamine) and

Amantadine, both treatments for fatigue but both off label. I fear the

real reason was that Provigil costs $9.00/tables while the others cost

>$1.00/pill. When an accountant can come between a doctor and his

patient, something must change.

Insurance coverage is covered by each state legislature. We need to

get a grass roots movement to lobby state legislatures to grant

formulary exceptions for orphan diseases.

I am researching talking points that can be used when speaking with

legislatures. As I develop them, and with Gretchen's permission, I

will post them in the files section of the group.

If you need help in your appeals or want to help in my efforts, feel

free contact me privately or through the group.

-- Larry