E-mail to the NIH

[Guest guest]

The following is the e-mail i received back from the NIH. I hope everyone is following Dr. Lindor's advice to contact the NIH to support funding of research on PSC. The more e-mails the better.

I hope this finds everyone well!

take care,

Ross Heil

Dear Ross,Thank you for taking the time to write to me and to share your personalstory. I know it must be difficult to be diagnosed with PSC and UC butit looks like you are channeling your energies in the right direction.We, too, hope that you will complete your studies and go on to researchPSC. We can use all of the help that we can muster in studying thisdisease!I am sure that you are disappointed that Dr. Lindor's high dose URSOstudy ended the way it did. But as you know, even "negative" studieshave some positive results. Dr. Lindor and his colleagues did anexcellent job of very carefully conducting this clinical trial and theyhave collected a wealth of data that will be used beyond answering thequestion about URSO. While it wasn't the result that we all wanted, itdoes answer an important question: dose high dose URSO benefit patientswith PSC?

Now that we think we know the answer, those patients takinghigh dose URSO can stop - why take an expensive drug that doesn't appearto be of benefit? It also is an opportunity for clinicians andresearchers to look for new/other therapies other than URSO.We at NIDDK share your desire to advance the science for PSC.Unfortunately, we are limited by rules that govern how we distributefunds that are appropriated to us by congress. Decisions aboutredirecting funds from one project to another are not a simple task andmay not be permissible because of federal regulations current laws.But, please be assured that we at NIDDK will do everything we can towork with Dr. Lindor to channel the funds allocated for his presentstudy into advancing the science of PSC. I have taken the liberty of including Dr. Lindor on this email - I hopeyou don't mind. Dr. Lindor and I

have been colleagues for a long timeand share your concerns and passion for finding new treatments for PSCand other serious liver diseases. He can actually give you more advicethan I am allowed to give on how to make PSC a national priority andthus, find new funds and advance the science of finding new treatmentsfor PSC. Best regards,Pat R. Robuck, Ph.D., M.P.H.Director, Clinical Trials ProgramDivision of Digestive Diseases and NutritionNIDDK6707 Democracy Blvd., Room 659Bethesda, MD 20892-5450Telephone: FAX: Email: pr132q@...