Saturday, April 28, 2007

Patti's Letter to Sen McCain

I sent the following to Senator John McCain using the government contacts link .

(Please feel free to cut/paste this if you'd like to use it as a guideline for your own letter to your elected representatives.)

To Senator John McCain 4/25/2007

Re: FDA Pergolide Withdrawal

If the continued availability of pergolide is not ensured, many horses with Cushing's disease (Pituitary Pars Intermedia Dysfunction or PPID) will be at risk to suffer the debilitating side effects of this disease. Cushing's is a "senior" disease - many with younger fit horses might not consider this important right now but any seasoned campaigner can be affected. Pergolide (obtained by veterinary prescription through compounding pharmacies or branded Permax which is no longer manufactured) is currently the only viable (effective and economical) treatment for this condition in horses. There currently are no alternatives.

For background:

Link to FDA notice

Link to article which summarizes the situation

Link to petition

This petition currently has over 3400 signatures, including many veterinarians. Eleanor Kellon, VMD, has spearheaded and is devoting countless hours to this effort in behalf of many thousands of Cushing's horses and their owners - contacting federal [FDA and CVM] and state officials, veterinary schools and organizations, writing articles, and working with pharmacists and research veterinarians in the U.S. and abroad.

This is a complex issue mired down in FDA rules and regulations beyond the scope of the average citizen or veterinarian.

Your attention and intervention into this current situation would be greatly appreciated by thousands of horse owners.


Patti Kuvik
Vail AZ

Claire's Letter to the FDA

Posted to EC Photos, reprinted with permission of author.

Dear Fellow Listers,

At Robin & Dr. Kellon's request I am posting a link to the letter I sent yesterday to Dr. Marcia Larkins and Dr. Stephen Sundlof at the FDA:

The reason I'm linking to it, rather than pasting it directly into this email is because it contains photos that I think are a very important and integral part of the message. And as you know we can't post photos directly into this list's messsages.
Read Claire's letter to the FDA.

Please understand that this letter is merely a SAMPLE of a personalized FDA plea. Please DO NOT copy my wording as it would really lessen the impact on those at FDA if they get letters that are very similarly worded -- BUT you can certainly use it as a starting point and modify it to fit your personal situation. The more letters they receive from horseowners talking about their specific horses, the more likely they are to view this as a very REAL threat to very REAL horses. Dr. Kellon has hit them with facts and numbers and hopefully educated them as to the value & importance of pergolide for treatment of these horses. You and I can make it real & personal. These are not just numbers, these horses are very real and part of our families.

Please write !! tell them your story...and specifically ask them to make a <<<"specific exemption from compounding from bulk drug for pergolide to be used to treat equine PPID">>>

If we lose just one horse due to the unavailability of pergolide's one too many !!!!! Jump on the band wagon and write to everyone who might have an impact.I have sent everyone in my address book the petition to sign and will continue to write letters until this issue is resolved.

At their request, I even wrote a story for a local AZ publication the "Bridle & Bit"...hope they can get in their next issue.We need to speak out ...loud & clear!!!!For my beloved Tamera and every horse out there that needs pergolide!!!!

Claire from AZ

[Claire's article in Bridle & Bit]

Time is Running Out

"There are an estimated 10 million or so horses in the United States, about 10% of which are in an age bracket that is classically high risk for Cushing's. If only 1% of those actually need and use pergolide, that's 10,000 horses that will likely have to be put down if (they don't have) medication," said Eleanor Kellon, VMD, co-owner of the Yahoo Equine Cushing's and Insulin Resistance Group. "The actual number is likely much higher. PPID is also being diagnosed much earlier now. It wouldn't surprise me if the actual number was closer to 50,000."
(quoted from The )

This could be my horse, your horse, the elite Olympic eventer or the school horse teaching kids to ride. No breed or type of horse is immune. This site has been started to keep you current on the latest information in the fight to keep pergolide available for our horses. There is at present no viable alternative to pergolide to control Cushing's Disease (PPID) or to stave off the debilitating, often painful and life-threatening side effects of this disease.

To begin - please sign the Save Pergolide petition, then encourage your friends and veterinarian to sign.

Then use the links to write to Federal and State officials, your elected representatives, equine veterinarian associations, your state horse councils and groups. If you can think of a link that should be added, let us know by adding a comment to this (or any) article.

Thank you.

Equine Pergolide Action Now! Team Members