By Pat Anson, Editor
The start of the New Year means the deadline is fast approaching for people to submit their comments about the opioid prescribing guidelines proposed by the Centers for Disease Control and Prevention (CDC). The deadline is January 13th to comment on the draft guidelines, which discourage primary care physicians from prescribing opioids for chronic pain.
So far, nearly 1,500 comments have been received at the regulations.gov website, and while the process appears to have gone smoothly for most users, some have complained to Pain News Network about the website loading slowly, not accepting comments, "internal errors" and other “technical difficulties.”
One couple even sent us a series of screen shots showing some of the problems the website was having around Christmas.
“I have multiple screen shots for days of being told the site was experiencing technical difficulties and to send an email. Another saying due to internal error they were unable to retrieve docket info, etc.,” wrote Jerry and his wife Sharon, who asked that we not use their last name.
The CDC says the website was undergoing maintenance the weekend of December 19-20, but the agency is unaware of any other period when the website was down.
“CDC is not aware of issues with submitting comments via Regulations.gov. People should be able to submit a comment through the docket without any issues. Once submitted, they should receive a receipt confirming the submission. There might be a slight delay in comments appearing online given the holiday,” said CDC spokesperson Courtney Leland in an email to PNN. She urged anyone experiencing a problem to call the Regulations.gov help desk (1-877-378-5457).
The delay in posting comments has contributed to the frustration of some posters, especially those who were already suspicious of the CDC, given the agency’s secrecy and lack of transparency when the guidelines were first drafted.
“My comment wasn't posted on the CDC opioid issue – I’m not surprised,” said David Becker, who submitted a lengthy comment accusing the agency of trying to “subjugate people in pain to forces beyond their control.”
Becker complained to the CDC and his comment appeared on the website the next day.
The CDC says it is not trying to censor or silence anyone – but is reviewing all comments for personal information, inappropriate language and other issues before posting them. That delay causes a discrepancy between the numbers of comments received and the number posted on the website.
“There were comments pending posting while CDC contacted individuals who had included personal, private information in their comments. CDC contacted the commenters to ensure that they agreed to have their personal information publicly posted. CDC has completed contacting those commenters and their comments have been posted. The only comments currently waiting to post are those that the docket managers need to review and catalog before public posting,” said Leland, adding that no comments had been rejected as inappropriate for posting.
Another issue that has led to frustration is the limit on characters, not words, used in comments. The limit is 5,000 characters, including spaces, something the CDC says it is unable to change, and posters say is too limiting and confusing.
“The site certainly isn’t very (user) friendly is it?” asked Janice Reynolds, a retire nurse and pain sufferer. “I read ‘words’ when it actually said characters. So even though it looked like I was under the ‘word’ limit it would say I had too many characters. I finally recognized what it was saying and divided the paper in two (pain patient and pain management nurse) and did them separately. That worked however it still wouldn’t let me download a file. It was frustrating. So it was really operator error with a poor instruction manual.”
Still another issue that has raised concern is efforts by some organizations to get their followers to submit form letters as comments. Physicians for Responsible Opioid Prescribing (PROP), for example, sent a newsletter last week to supporters urging them to submit comments in favor of the guidelines. In his “urgent request” to supporters, PROP founder Andrew Kolodny, MD, even had several suggestions on what to write.
But in its “Tips for Submitting Effective Comments,” the government says that tactic won’t work. It’s not the number of comments that come in, pro or con, but the quality.
“Many in the public mistakenly believe that their submitted form letter constitutes a ‘vote’ regarding the issues concerning them. Although public support or opposition may help guide important public policies, agencies make determinations for a proposed action based on sound reasoning and scientific evidence rather than a majority of votes. A single, well-supported comment may carry more weight than a thousand form letters,” the regulations.gov website states.
The public comment period on the CDC's prescribing guideline continues until January 13th. You can make a comment by clicking here.
The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.