By Mary Maston, Guest Columnist
I am a chronic pain patient. I do not hold a law degree, and quite frankly with the pain I am always in, reading complicated law jargon makes my head ache. That being said, I was blessed with common sense.
The way that the CDC is holding secret meetings about the agency's proposed opioid guideline is a direct violation of federal law. This has been pointed out by Mark Chenoweth of the Washington Legal Foundation, as well as other professionals that are better versed than I.
The real question here is how long are they going to be allowed to get away with it?
“Workgroup meetings are not open to the public,” a CDC spokesperson told Pain News Network, referring to two meetings recently held in secret by a newly appointed advisory group.
The Federal Advisory Committee Act (FACA) says differently:
(1) Each advisory committee meeting shall be open to the public.
(2) Except when the President determines otherwise for reasons of national security, timely notice of each such meeting shall be published in the Federal Register, and the Administrator shall prescribe regulations to provide for other types of public notice to insure that all interested persons are notified of such meeting prior thereto.
(3) Interested persons shall be permitted to attend, appear before, or file statements with any advisory committee, subject to such reasonable rules or regulations as the Administrator may prescribe.
I have yet to see President Obama, CDC director Tom Frieden or anyone else claim “national security” is the reason these meetings are not open to the public. But I know why they want to do this behind closed doors. They know that the guidelines are wrong and have upset millions of people with hundreds of incurable diseases and conditions that are already struggling under heavy scrutiny. They don’t care about that and continuously turn a deaf ear to those who are pleading for them to stop what they are doing.
Are they even going to read and take to heart over 4,300 comments left mostly by actual patients and caregivers of chronic pain patients on regulations.gov? Do you want to know why more comments weren’t left and why many were written anonymously? It’s because many people are terrified to go against the government and they are afraid of retaliation. They already have such a difficult time finding a doctor that is willing to prescribe opioids that they don’t want to do anything to further rock the boat.
If you join any support group for any chronic illness – just pick one – there are hundreds of them, it won’t take long to realize that overprescribing is not the issue. Join my group, where pain is grossly undertreated, if treated at all, and it’s a daily discussion by a multitude of people from all sorts of backgrounds. Overprescribing may have been an issue in the past, but not anymore. The DEA made sure of that.
The CDC and the addiction specialists that helped draft the guidelines don’t care that in their efforts to save thousands of people from addiction they are sentencing millions of pain patients to a life of agony. They’ve admitted that the overdose numbers that they spout off as validation for their actions aren’t correct, but they continue to use them as a scare tactic to advance their agenda. You can’t lump heroin users in with legitimate patients who take their medications responsibly. This is flat out lying and it is fraud.
“We have heard some concerns about the process. We’ve done a lot, but want to be sure there will be no concern about the final guidelines when released,” said Debra Houry, MD, director of the CDC's National Center for Injury Prevention and Control, who is the administrator who oversaw development of the guidelines.
Some concerns? Is this woman for real!?! They obviously had the intent to release the guideline in its original form with no thought of the millions of people it would impact so drastically. They intended to just roll with it and to hell with the consequences to people in pain. The Veterans Administration is already being required to follow the guidelines. How many post war veterans do we have that have sustained life altering injuries in battle? “Just take a Tylenol or Aleve. You’ll be fine.”
Some members of Congress think this entire covert process by the CDC is dirty, that’s why they are opening an investigation into their practices and the process by which they appointed the initial advisory panel.
It’s about time, but it isn’t enough. I hope Congress also addresses how the CDC continues to conduct itself. It’s obvious to me and many others that have voiced “some concerns” that legal action needs to be taken against those who have intentions to knowingly and willingly hurt more people than they help, and breaking the law while doing it.
Tom Frieden and Debra Houry are allowing this circus to continue. They need to be held accountable and replaced. Enough is enough.
Mary Maston suffers from a rare congenital kidney disease called Medullary Sponge Kidney (MSK), along with Renal Tubular Acidosis (RTA) and chronic cystitis. She is an advocate for MSK and other chronic pain patients, and helps administer a Facebook support group for MSK patients.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.