Editor's Note: Below is a message from PANDORA, a nonprofit patient advocacy group for people with neuro-endocrine-immune illnessses. It takes less than a minute to send the email.
Attention ME/CFS patient community,
The email campaign to the FDA is continuing. We are asking them to fulfill the promises and purpose of their April ME/CFS Drug Development workshop.
Now is not the time to give up!
Patient advocates have been visiting Washington legislators in the last few weeks. This is going to add even more pressure. But, they need to know patients care about this issue. Medical professionals are telling us that when one drug is approved for this disease, other companies will take an interest.
PANDORA Org and the rest of the "FDA Team" are asking you to send a new message to the FDA and to listed members of Congress. We want them to hear from you, your family and your friends.
Remember, NUMBERS COUNT!
Please email the following to David Banks, who monitors the emails for Dr. Janet Woodcock, and PANDORA Org. (We are also monitoring how many emails are sent.) Additionally, please Cc others in the Department of Health and Human Services and congressional staff members so they can influence the FDA.
Just copy and paste the following, filling in your name and address or email information at the end. (As always, this is just a suggested template for your convenience):
To: David.Banks@fda.hhs.gov, email@example.com
Cc: firstname.lastname@example.org, Sara_Mabry@casey.senate.gov, Karen_Wade@hagan.senate.gov, Eamonn_Hart@blumenthal.senate.gov, Carolyn_gluck@reid.senate.gov, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, christopher.Stewart@mail.house.gov, ryan.mcBride@mail.house.gov
Subject: ME/CFS Treatments
Dear Drs. Hamburg and Woodcock:
ME/CFS patients continue to suffer day after day, year after year. You can change that by working directly with the pharmaceutical industry. Give us the opportunity to have some quality of life.
You have often said you are committed to those suffering from chronic diseases, acknowledging the burden to our nation's families, healthcare system and economy. The way the FDA has dealt with diseases like Alzheimer's and obesity demonstrates you can and are willing to create a special pathway to drug development for chronic diseases with high morbidity.
No drug is without risk. No drug works on every patient. But physicians and ME/CFS patients have no options. When there are NO drugs approved for a disease, there is NO innovation by pharma and NO hope for those suffering.
As physicians, you understand the risk vs. benefit, especially for diseases that create high morbidity. As leaders, you have the ability to change the lives of those suffering with ME/CFS. Over 700 patients provided testimony to the advisory committee supporting Ampligen, and more than 4,000 patients asked you to approve the drug. The top two potential drugs, Ampligen and Rituxmab, did not make the agenda at the Patient Focused Drug Development Workshop. Key words here: DRUG DEVELOPMENT. Their manufacturers were not even invited to the FDA's Drug Development meeting.
We know these drugs and others have the potential to help some patients with ME/CFS. We understand greater than anyone the risks and benefits of living with ME/CFS. Bring pharma – all those companies that have drugs that are now being used off label for ME/CFS patients – to the table! Without such a meeting, those in charge of overseeing drug development for ME/CFS are simply spouting empty words of "support."
"Place Your Name Here"
"Place Address and/or Email Here"
– – – end of email message – – –
The FDA Team includes:
Lori Chapo Kroger, patient and president of PANDORA Org
Robert Miller, patient and patient activist
Courtney Miller, ME/CFS patient caregiver/advocate
Pat LaRosa, RN, MSN, patient and NJCFSA president
Billie Moore, parent of patient lost to ME/CFS & NJCFSA advocacy chair
Cort Johnson, patient and principal of Health Rising
Lori Chapo-Kroger, President
PANDORA Org, Inc.