the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

Plain Language: Draft Opioid Guideline Released – Information and How to Take Action

Introduction

The Centers for Disease Control and Prevention (CDC) updated its Clinical Practice Guideline for Prescribing Opioids on February 10. The Guideline gives advice to doctors about prescribing opioid medications. You can learn more about opioid medications and the old Guideline here [insert link to background info]. The 2022 update is bigger than the old Guideline from 2016. It gives advice for all kinds of doctors and all kinds of pain.

The updated Guideline is better than the 2016 Guideline. It focuses more on treating people based on their individual needs. It says it is important to treat pain. It says that the Guideline shouldn’t be used the same way in every situation. It recognizes that the 2016 Guideline hurt people. It makes some changes in response to that. It doesn’t tell doctors to only prescribe opioids for a certain number of days or at a certain dose. It warns against bringing people’s doses down or stopping treatment with opioid medications too fast.

Lots of good things are in the new Guideline. This is because organizations like NCIL spoke up and told the CDC what we wanted! We need to make sure these good things stay in the final Guideline. We need to tell them the things we don’t like. And we need to make sure they take steps to help people who were hurt by the 2016 Guideline. The CDC wants to hear what people think of the new Guideline. They will listen to everybody’s opinions before they make the Guideline final.

You can comment on the Guideline until April 11th, 2022. We want you to tell the CDC what you think. We also want you to talk to your Members of Congress. It is important to tell them how the 2016 Guideline hurt people with pain. We need to make sure the CDC and people who make laws know how important this issue is to people with pain. We need to tell them what to change before the rule is finalized.

NCIL has lots of documents about the Guidelines to help you learn more and form your opinion:

Take Action!

Here’s how you can submit your comments to the CDC. You can submit comments until April 11th, 2022, at 11:59 PM.

Be aware that your comments aren’t edited. Don’t put any information in your comments that you wouldn’t want people to see. This includes personal information like your address or phone number.

If you want more information, you can contact Arlene I. Greenspan. Arlene I. Greenspan is the person the CDC assigned to handle questions about this issue. This isn’t a way for you to submit comments. It’s just a way to help people who have questions. You can email opioids@cdc.gov or call 770-488-4696.

How to Contact Your Members of Congress

  • Phone: You can call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Tell the person who picks up the phone where you live. They will connect you to your Senator or Representative.
  • Online: All Members of Congress have contact forms online. You can find your Senator’s contact form by going to senate.gov. You can find your Representative’s contact form by going to house.gov/representatives.
  • Text: Resistbot turns your texts into faxes, mail, or hand delivered letters to your elected officials. Text “RESIST” to 50409 and follow the directions texted back to you.

Comment Guidance

Your comments should share your feelings about the updated Guideline. You can also share your experiences with the 2016 Guideline or accessing treatment pain. Below are some tips and sample talking points. You are not limited to comments about these points.

Tips for submitting comments and sample talking points:

  • Introduce yourself: who you are, where you live.
  • Talk about the things you like in the updated Guideline. Talk about why those changes are important.
  • Talk about the changes you don’t like. Talk about what you’d like to see instead.
  • Talk about the harms that have occurred because of the 2016 Guideline. Do you think this update will address them?
  • Talk about your personal experiences. (For example: Did your doctor taper you down or off your opioid medications? Did your doctor abandon you? Did your insurance refuse to cover your opioid prescription, or did your pharmacy refuse to fill it?)
  • Be brief but specific. If you feel comfortable, mention your diagnoses, how your opioid medication helps you, and what happened when you lost access. (For example: “I have MS. With medication, I was able to garden, cook for my family, and even travel. After my medication was denied, I am bedridden at home.”)
  • Talk about things you like or dislike about how the CDC updated the Guideline. (For example: Did you have a hard time participating in their public meetings? Was it hard to find information about how to provide input?)
  • Talk about the other things you do to manage your pain. What is the role opioid medications play in your pain management plan?

Background Information

The Centers for Disease Control and Prevention (CDC) is a part of the federal government. The CDC gives doctors and the public important information about health issues. In 2016, the CDC gave doctors advice about how to prescribe opioid medications for chronic pain. This advice was called the “CDC Guideline for Prescribing Opioids for Chronic Pain”. We will call it “the Guideline”.

Opioid medications are a type of powerful medicine. They can help with pain. Some people can get addicted to them. Like many medications, opioid medications come with other risks as well.  The CDC wanted people to get treatment that works for them. They also wanted to make sure people use opioid medications as safely as possible.

Doctors interpreted the Guideline in different ways. So did pharmacies, insurance companies, and others. They created rules for prescribing and paying for opioids. A lot of rules were too strict. They made it hard for people who need opioid medications to get them. Some of these rules focused on prescribing smaller doses for everyone. Some rules limited the amount of time people could take opioid medications. Because of these rules, some people with pain had to lower their doses. Some had to stop taking their medication. Some people had a hard time getting any type of healthcare. The Guideline made life hard for people with pain.

The CDC saw what happened. They put out a warning that made the Guideline clearer. Other federal agencies and groups also put out warnings. It did not help. States, doctors, payers, and others were still strict about the rules they put in place. People in pain are suffering.

In 2019, the CDC said they would look at the Guideline again. They said they would update the Guideline. You can learn about how they updated it by going to this link. The CDC asked for public opinions. NCIL gave our opinions several times. We asked the CDC to clearly explain their process. We asked that they consider opinions from many people. We told them that the Guideline hurt people in pain.

We asked the CDC to include certain things in the update. We asked them to:

  • Warn against limiting people to certain doses or time periods to take opioid medications
  • Offer help for people with pain who lost care because of the Guideline
  • Talk about the limited scientific evidence that supports some of their advice

The CDC included some of these things in the update. There’s still more work to be done.

Summary of the Draft Updated Guideline

SCOPE AND AUDIENCE:

  • The 2016 Guideline only applied to people with chronic pain. The new Guideline applies to all people with pain. This includes acute pain, which is pain that lasts up to one month. This includes subacute pain, which is pain that lasts from one to three months. And this includes chronic pain, which is pain that lasts more than three months.
  • The 2016 Guideline was only aimed at primary care doctors. The new Guidelines is aimed at all doctors who treat pain outside of the hospital. It is not aimed at pain management doctors.

POSITIVES:

  • The Guideline says pain is a major problem. It talks about how important it is to treat pain.
  • The Guideline recognizes that the 2016 Guideline hurt people.
  • The Guideline doesn’t tell doctors to only prescribe opioids for a certain number of days. It doesn’t tell doctors to only prescribe a certain dose.
  • The Guideline warns doctors against quickly lowering the dose of opioids. It warns that suddenly stopping opioid treatment can be harmful.
  • The Guideline focuses on treating people based on their individual needs.
  • The Guideline tells doctors to work together with their patients to treat pain.
  • Some people and groups of people face discrimination in healthcare. This includes pain care. The Guideline focuses on these barriers. It talks about the different quality of treatment different groups of people get. It tries to fix these problems.
  • The Guideline is flexible. It recognizes that not every person and situation is the same. It says it should not be used to create policies that apply to everyone the same way.

CONCERNS and POSSIBLE RESPONSES:

Concern: The Guideline says it doesn’t apply to people with sickle cell disease and cancer. It also says it doesn’t apply to palliative and end-of-life care. (Palliative care focuses on making people more comfortable. It doesn’t focus on curing or removing illness.) We think saying the Guideline doesn’t apply to only some people is a problem. We also think saying the Guideline doesn’t apply to only some types of care is wrong. We also know these exceptions have not worked in the past. The 2016 Guideline had similar exceptions. People with cancer and others still faced barriers to pain treatment.

  • How to respond: Tell them that pain severity varies with many conditions. Tell them that exceptions do not work. 

Concern: The Guideline says nonopioid treatments are best for subacute and chronic pain. This treats all non-acute pain the same way. This is at odds with the Guideline’s focus on individualized care. This recommendation can lead to other treatments being denied.

  • How to respond: Encourage the CDC to change their wording. For example, they can say “opioids are not often preferred”. They can say “nonopioid treatments are often effective”. They can also say that opioids should not be used as the first treatment. These examples would improve the recommendation. People would be less likely to use it to hurt patients.

Concern: The Guideline doesn’t tell doctors to only prescribe a certain dose of opioids. It doesn’t include dose limits in the main recommendations. This is important. Many doctors and lawmakers mostly look at those suggestions. But the Guideline still puts 50 MME in bold as a warning. (MME stands for morphine milligram equivalents. It is a unit used to figure out opioid medication dosage.) Doctors and lawmakers might still use this number.

Concern: The Guideline warns against decreasing or stopping opioid medications too fast. But it still focuses a lot on tapering. (Tapering means bringing people’s doses down.) It also warns doctors against bringing people’s doses back up. (This is called reverse tapering.) Finally, there are a lot of important studies about the harms of tapering. The CDC did not include these studies in the Guidance.

  • How to respond: Tell the CDC to include all recent studies on tapering. Tell them you disagree with the suggestion that doctors should not reverse tapers. This is even more important if people are harmed because of the taper.

Concern: The CDC used weak data to write their recommendations. This worries us. For example, most of the studies they used did not include people with severe pain. The studies also didn’t include people with more than one pain condition. We are worried about what studies they decided to use or not use. Finally, we are worried that the CDC made decisions based on not a lot of evidence. Just because there is not a lot of evidence that something works, it doesn’t mean it doesn’t work.

  • How to respond: Tell them we are concerned about their evidence. Encourage them to include the evidence they left out. Tell them to be clear about the limitations of their evidence.

Concern: Most of the time, a combination of treatments is most effective for pain. This is known as multimodal pain care. The Guideline does not talk enough about this. The document talks a lot about trying treatments “before” opioids. It talks about switching from opioids to other things.

  • How to respond: Tell the CDC that this approach isn’t the best way to treat pain. Tell them that most people use treatments in combination. These treatments sometimes include opioid medication.

Concern: Getting a draft guideline finalized is only part one. What the CDC does with the Guideline is very important. The Guideline provides five main principles to follow. These are a start, but more must be done. People must use the Guideline to prevent future harm. But they also need to undo the harm from the 2016 Guideline.

  • How to respond: How the CDC talks about the Guideline is important. Training people on the new Guideline is also important. This will help undo the harm from the 2016 Guideline. It will avoid more problems. Tell the CDC to focus on flexibility. They need to focus on treating people based on their individual needs. Tell the CDC to give their materials about the Guideline to lots of people. The CDC needs to work with lawmakers to get rid of current bad policies. They also need to work with insurance companies and law enforcement.