How You Can Change the Public Conversation About Pain
/By Richard Lawhern, PhD, PNN Contributor
Because I am highly visible as a healthcare writer and advocate for people in pain, I receive many inquiries from people who have been deserted by their doctors and denied effective treatment. Many ask me, “What can I do?”
My answer is that many of our problems with pain treatment began with the guideline on opioid prescribing for chronic non-cancer pain, published in 2016 by the U.S. Centers for Disease Control and Prevention. The CDC is currently updating its recommendations, with the goal of releasing a revised guideline for public comment late this year. Without major change or outright repeal of the guideline, nothing will change and much may grow worse.
CDC management knows that they messed up -- they’ve been told so repeatedly over the last five years by both doctors and patients. But still they dither and delay, and refuse to act on behalf of millions they have harmed.
Congress has added insult to injury with misdirected legislation blaming doctors for the substance abuse of people who never saw a doctor for pain. And the Drug Enforcement Administration continues to drive doctors out of pain practice by targeting and persecuting those who prescribe opioid medication for people in agony.
We can no longer depend on the CDC and DEA to do the right thing. They are too concerned with defending their earlier and ongoing misbehavior. Instead, we’re going to have to change a lot of minds in Congress, the Executive Branch, and at the state level to force change by legislation. Thousands of patients, caregivers and doctors must lobby if change is to happen.
How Do We Lobby Effectively?
We don’t have the money to hire lobbyists. Law firms won’t sue without millions of dollars in retainers up front. Most legislators don’t actually read emails, even from their own constituents, and increasingly they lock out emails from anyone who doesn’t vote in their districts. Petitions don’t work either, even when we have 100,000 signatures behind them.
So what can we do? We can phone our legislators to demand change, and we can reach out to editors, publishers, radio and TV news anchors to ask that they show the public “the other side” of the opioid crisis.
It may seem that one person acting alone can’t do much. But thousands of people acting consistently sometimes can. We need patients, caregivers and medical professionals to contact their legislators and regulators. Not just once, but every week. Your congressional representatives in the U.S. House and Senate, as well as state legislators, can all be candidates for a phone call.
To learn their names, first do a Google search for “legislators” plus your zip code. You might need to explore several “hits” to find the phone numbers for local congressional offices and the offices of your state legislators. Other possible contacts to explore:
U.S. National Office of Drug Control Policy
Office of the Governor
State Health Department
Executive Director of your State Medical Board
State office of the Drug Enforcement Administration
State Attorney General
Two important websites may reduce the burden of multiple Google searches to locate these people. The Chronic Illness Advocacy & Awareness Group (CIAAG) has links to a national directory of legislators and regulators by state; a library of resources and research; “How to” advocacy guides; and templates for calling and meeting with legislators. Similar resources can be found at Pain Warriors Unite, which also has a large archive of related information and advocacy guides.
What Should We Tell Them?
When you locate the phone numbers of legislators and regulators, the next task is to phone their offices and talk to them or their staff.
When you call, you might find that the office isn’t answering their phones. If you can leave a message, then state your name and callback number. Tell them you are a voter in their state or district, and you want to talk with their healthcare policy staffer about how bad policy and restrictions on pain treatment are destroying your life. Hang up politely.
If you reach anyone in real time, it will almost always be a staffer. As you speak, try to listen for their responses and be respectful. Here is a possible script. Practice it aloud before you make your calls, so you are comfortable with what you want to say:
“Good morning” (or Good afternoon). My name is ___________ and I vote in ______ (State or District number).
“May I ask your name, please?” [Make a note for later follow-up]
“I’ve been a chronic pain patient for __ years and under doctor’s care for several complex pain issues. Right now, my life is a wreck because doctors have been terrorized by government authorities. Nearly half of primary care clinics in the U.S. are refusing to accept new patients on opioid pain relievers, even though pain is the number one reason why people see a doctor. Many practices that still treat pain are rapidly force-tapering patients off opioids, or below effective treatment levels.”
You should include some personal details about what your life is like without adequate pain management. An example might be:
“I literally cannot get out of bed many days, because I am in agony from under-treatment of my pain. I can’t work, do simple chores, or leave the house for basic necessities without help.
The so-called ‘prescription opioid crisis’ is bogus. Doctors prescribing opioids for their patients didn’t create our public health crisis with addiction and overdose deaths. Pain patients almost never become addicted. For millions of us, opioids are the only thing that gives us any quality of life.”
End with a call for action. Ask them to do something with the information you give them.
“People like me need your boss to sponsor legislation to fix this mess. We need him (her) to help stop the widespread persecution of doctors who prescribe medical opioids for people like me.
Restrictions on access to effective pain care are driving thousands of us to buy street drugs for relief or to even consider suicide. If your boss doesn’t act to stop this disaster, then he (she) will become an accessory to it.”
End the call by asking the staffer to add notes from the call to their office phone logs, and to brief the office Chief of Staff or legislator. Ask for a call-back from that individual, confirming that they got the message and are working on your behalf. Be sure to leave a call-back number if they don’t ask for one.
Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids. Dr. Lawhern has written or co-authored over 100 papers and articles published in medical journals and mass media.
