Please read the letter at the bottom I received from the American Pain Foundation, along with my own letter that I have posted, emailed to the FDA, my Congress man, my Senators, and the President!
http://www.painfoundation.org/ (The front page has the information about it)
I just read a disturbing email from the American Pain Foundation. I am a chronic
pain and chronic illness patient, and have been since I was 17. I began with
horrible migraines that plagued my life several times a month. For years, I got
only a short acting medication, or had to go to the emergency room to get
treatment. That got expensive, was not the real answer, and almost destroyed my
marriage, my job and my quality of life. I put up with that for years. Then at
40, I began to have degenerative joint disease. My joints quickly began to
disentegrate to the point, I have had to have several knee surgeries, including
two total knee replacements, 2 blow surgeries (both need it again, shoulder
surgery on both shoulders (the last was my right one, that has extensive issues,
and may need to be replaced soon also. Plus wrist surgery, now my other wrist
and both thumbs need surgery. I also have Mixed Connective Tissue Disease/Lupus
and Sjogren's. Without my pain doctors help, my quality of life would be none. I
lost all of my jobs due to massive pain, due to having to miss so much work. I
finally got my complete disability after over 3 years, appeals and a hearing.
The pain most days would be almost unbearable without my extended release
medications. With those given properly, and I am extremely monitored by a very
good pain specialist, plus my rheumatologist, my PCP, and my orthopedic
physician, all know about my pain specialist, and they all work together. I
cannot take many medications like NSAID's due to a heart attack at 40. I cannot
take any of the ergot medications for migraines due to my heart attack, and
being allergic to them. Without my proper daily extended release pain
medications, I would be basically unable to even get out of bed, much less have
my life back as I do now. I realize some abuse the system. But, why should I, as
a true patient that does really have health issues that cause so much pain, be
punished because of the abusers? If you take some of those extended release
medications off the market, I would be worthless, as far as my family, my
husband and my life. I have tried over the years every new medication that comes
on the market, yet I either cannot take them due to my other health problems,
such as the heart attack, GERD, kidney issues, high blood pressure and TIA's. I
am only 49 years old and hope to continue to have my life back from the
excruiating, daily chronic pain I had to endure for so many years of my life,
until finding a good specialist, to help me with monitoring and extended release
pain medication. Without control over my horrible pain, and without being able
to continue my medication as it is, I feel suicide could be an issue for not
just myself, but millions of others, who just could not withstand knowing they
would have to suffer horrible pain, have no job, possibly lose their spouses,
and their families, I fear many of us would give up and not be able to continue
on with life.
It is fine to do something about those who abuse the system. But there are
thousands of people like myself, who do what our doctors say, who take our
medications as they should be, and we do so in order to have our lives back. We
are never free of pain completely, but those medications give us enough relief
so we can try and half way life our lives normally.
I urge you to take my case, as well as the millions of chronic pain patients
into deep consideration. You would be taking people away from their jobs, their
families, their spouses, and taking away their quality of life.
I realize we may need more education about how to use medications properly for
some, how to store them properly, away from anyone but the patient, so they can
control the medications and keep them out of the hands of others.
Taking away the extended pain medications would drive the costs of emergency
room visits, doctors visits, and other medical facilities up by millions,
because people would flock to the ER, their doctors, and other clinics for pain
relief. Those visits would be often by millions without their proper extended
release medications. Short relief pain medications are potentially more harmful
due to the Tylenol in them, or NSAIDs in them. They can cause things like liver
failure, they do not work for chronic pain, and many people are unable to take
them to due stomach problems like GERD.
This type of action would also cause patients with true chronic pain issues to
have a stigma associated with them, and then those like myself, who are truly in
horrible daily pain, would not be able to get proper, and immediate treatment
with medications that control pain properly.
Without my good physician, who prescribes the proper extended release
medication, and monitors me, plus I have been well educated about opioid
medications, I basically would be useless, not able to run an errand, help clean
my home, or have any kind of quality of life. I too could lose my husband, and
others around me, just due to not being able to live my life, without being in
bed or on the sofa. I finally found relief from the intolerable pain that
consumed me for years. I urge you to leave things as they are as far as the
medications that help so many.
My best regards, Pam Steele
Here is the letter from the Pain Foundation:
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
The Federal Drug Administration (FDA) may remove important pain medications from the market or couldvery likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
ACTION REQUESTED
Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.
Please review the following to assist in your letter writing and to provide further information on the issue:
Frequently Asked Questions
Risk Evaluation and Mitigation Strategy (REMS) Consumer Talking Points
American Pain Foundation's Position Statement on REMS
American Pain Foundation’s Recommendations on REMS
Click here to go directly to the FDA comment submission page to submit your letter electronically or mail your letters to:
Division of Dockets Management (HFA305)
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852
Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter toadvocacy@painfoundation.org so we can also have an opportunity to hear your commentary.
Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.
Mark Maginn
Carolyn Noel
Teresa Shaffer
Mary Vargas
FDA’s REMS Information
THANK YOU FOR SUBMITTING YOUR LETTER AND ALLOWING YOUR VOICE TO BE HEARD!
Sincerely,
American Pain Foundation
