This advocacy advice comes from Richard Lawhern, a tireless advocate for pain patients. He was a headline speaker at the “Stop the War on Chronic Pain Patients” rally in Wash DC last fall (See Making Ourselves Heard) and has personally contacted both journalists and legislators to fight the flood of anti-opioid articles and legislation.
I thought I would share some tactics that may help others be more effective in this kind of advocacy. Some of this is things I’ve heard. Some is what I’ve experienced myself.
- Physically visiting your own Senator’s office with an appointment to see a staff member by name is the most effective lobbying you can do without a checkbook and deep pockets. Senator’s constituents will always get priority over a non-resident.
- Telephoning to talk with a staff member by name is the second most effective method.
- Emailing a staff member by name is the third most effective route.
- Sending a comment through the Senator’s “Contact me” internet gateway is generally the least effective. In a rushed period, that gateway might not even be read by staff, and it will almost never actually get seen by the Senator.
To talk with or email staff and get them behind your message to the Senator, you first have to know who they are by name. Once you have the name, you can send email.
The address convention is the same, throughout the Senate: firstname.lastname@example.org (in a few cases, more than one Senator has the same last name so you may need to look up the Senator’s website and see what the domain name is).
I found two sources helpful in tracking down staffers by name and position. When you run a google search on “Senator XXX Staff Directory”, you’ll often see both sources in the top 10.
The staff directories won’t always be current, even from these sources.
And not all Senate offices will give out the emails of staffers, even though they’ll usually tell you the name verbally if you call and ask. I managed to get about 90% of my emails delivered, despite those impediments.
I’ve taken the liberty of attaching the Senate dial-in numbers and healthcare legislative assistant names. Feel free to share this with others.
Regards and well wishes,
Edited email example:
Dear Mary Naylor, Legislative Director to Senator Tim Kaine
The HHS Centers for Medicare and Medicaid Services are accepting public input through March 3rd, 2017, on a proposal to integrate the CDC Guidelines on prescription of opioids to adults with non-cancer chronic pain, into their criteria for insurance reimbursement. I believe on the basis of extensive research and contacts with hundreds of pain patients and medical professionals, that such a step will be a uniform disaster for pain patients across America. It must NOT be allowed to happen until major errors and scientific frauds incorporated into the Guidelines are corrected.
I urge the Senator to join in authoring legislation or other effective action to stop the CMS process, pending an unbiased review and correction of the CDC Guidelines by a reconstituted working group led by board certified pain management specialists and including pain patient advocates.
Please review the background information I have developed on this issue, and brief your Senator on the points you find most pertinent.
Richard A “Red” Lawhern, Ph.D.
Edited from input sent February 7, 2017 to AdvanceNotice2018@cms.hhs.gov
To whom it may concern,
I write to strongly oppose the proposed alignment of practice standards at the US Centers for Medicare and Medicaid Services, with the Centers for Disease Control and Prevention March 2016 guidelines on prescription of opioids to adult non-cancer chronic pain patients.
On multiple grounds, the CDC guideline is an ongoing disaster for both pain patients and medical professionals.
The guidelines must be immediately withdrawn and rewritten by an unbiased body of consultants including as key members, board certified specialists who are active in the community practice of pain management, as well as chronic pain patients themselves.
Then, Richard lists the many flaws of these guidelines:
— Although opioid-related deaths are a serious public health issue, they are for the most part not being caused by drugs prescribed to legitimate pain patients. Research published by the CDC itself reveals that death statistics are dominated by illegally imported Fentanil, Heroin, Methadone, and opioids diverted by theft or fraud to the street.
Negative impact on Pain Patients
— The CDC Guidelines were originally phrased as advisory for general practitioners and subject to tailoring for each individual patient — not mandatory for all physicians or applied as a one-size-fits-all restrictive edict. If made mandatory, the 90 MMED upper limit on opioid dose levels will effectively destroy the lives of many tens of thousands of chronic pain patients who have been maintained at stable doses above 100 MMED (often above 400 MMED) for years.
— The CDC Guidelines are already having an enormous negative impact on the lives of tens (possibly hundreds) of thousands among the 100 Million+ chronic pain patients in America.
— Doctors – both general practitioners and specialists – are leaving pain management practice in droves, fearing malicious and arbitrary prosecution by DEA for “over-prescription” of opioids — against a standard of prescription which is ill-supported by the medical evidence.
— Patients who have long been successfully managed on high doses of opioids are being outright deserted, in many cases without withdrawal assistance or oversight, and uniformly without access to effective alternative means for maintaining the quality and functionality of their lives.
— Many among those deserted are lapsing into disability, losing their ability to sustain former employment or family relationships that have benefited from treatment of pain with opioids.
— Some patients have already committed suicide, overcome by agony imposed on them by their physicians. More are likely to suicide as this crisis continues and deepens.
Evidence poor or lacking
— Even in its own published content, the CDC Guidelines acknowledge that recommendations are grounded upon very weak medical evidence.
— Conclusions were drawn which substantially exceeded the content or clarity of the available medical evidence.
— Conclusions were drawn which contradicted or omitted previous research published in FDA and NIH studies. Particularly damning are published CDC workshop findings that confirm the existence of a substantial cohort of patients among whom opioid treatment is both appropriate and an only resort after the failure of all other therapies.
— Extended commentary submitted on the draft Guidelines by the American Academy of Pain Management appears to have been largely ignored — with neither explanation nor rationale.
— It appears that public health statistics were misinterpreted and may have been deliberately distorted to support a largely fictitious “epidemic” of deaths misattributed to opioids prescribed to pain patients.
— Especially disqualifying is the fact that the CDC Guideline fails to acknowledge a number of key facts widely accepted in the practice of pain management.
— Nowhere in the Guideline are genetic factors acknowledged which create wide variability in opioid metabolism and drug tolerance among the patient population. This variation directly contradicts most of the dose limit rationale embedded in the Guideline.
— Nowhere in the Guideline are controversies acknowledged with pertain to Morphine Milligram Equivalent Dose determination. Estimated MMED is considered by many practitioners to be a to be a matter of mythology and opinion, not science.
— The Guideline appears to parrot an unproven assertion that drug tolerance and “hyperesthesia” are universally experienced among chronic pain patients — which is deeply contradicted by some published studies and by widespread reports of patients themselves. Hyperesthesia appears to be relatively rare among chronic pain patients, though no reliable statistics are available on its incidence.
— There is now incontrovertible proof that the CDC Consultants Working Group which wrote the Guidelines deliberately biased their consideration of medical research to unfairly disadvantage and discount the effectiveness of opioids in treating chronic pain. They also substantially inflated the perceived risks of opioid prescription by ignoring multiple confounding factors in the studies used to support their Guidelines.
— There is credible evidence that key figures associated with the CDC attempted to write Guidelines which would divert research and treatment funds to professionals in addiction psychiatry, to the disadvantage of professionals in chronic pain. The guidelines process up to December 2015 was dominated by participants who had vested financial and professional interests in this diversion of resources. That process was also largely closed to the public until challenged by Congressional overseers.
The CMS system MUST NOT accept the CDC Opioid Guidelines as a basis for mandatory practice standards.
These Guidelines are
- scientifically invalid,
- biased by professional self-interest among addiction treatment specialists, and
- highly destructive in their effects on chronic pain patients.
As support for this position, I encourage you to read some of the many references cataloged here: https://edsinfo.wordpress.com/2017/02/01/evidence-against-cdc-opioid-guidelines/ “Evidence Against CDC Opioid Guidelines”.
I am available for follow-up discussions, should that input be desired. I write as a non-physician author and advocate for chronic pain patients, with over 20 years experience in peer-to-peer support groups, Internet forums, and analysis of the medical literature.
I have no financial conflicts of interest in that I am retired and working solely without direct or indirect reimbursement, as a volunteer.
Here is Richard’s list of Senators with their legislative assistant contacts:
Senator Joe Donnelly, (202) 224-4814, Katie Campbell
Senator Pat Leahy, (202) 224-4242, Kathryn Toomajian
Senator Al Franken, (202) 224-5641, Rachel Wilensky
Senator Chris Murphy, (202) 224-4041, Joe Dunn
Senator Jack Reed, (202) 224-4642, Jill Boland
Senator Dick Durban, (202) 224.2152, Max Kanner
Senator Sheldon Whitehouse, (401) 453-5294, Jen DeAngelis
Senator Maria Cantwell, (202) 224-3441, Nico Janssen
Senator Diane Feinstein, (202) 224-3841, Megan Thompson
Senator Tammy Baldwin, (608) 663-6300. Kathleen Laird
Senator Claire McCaskill, (202) 224-6154, Janelle McClure
Senator Jeanne Shaheen, (202) 224-2841, Michelle Greenhalgh
Senator Angus King, (202) 224-5344, Marge Kilkelly
Senator Richard Blumenthal, (202) 224-2823, Brian Steele
Senator Edward j Markey, (202) 224-4543, Avenel Joseph
Senator Maggie Hassan, (202) 224-3324,
Senator Amy Klobuchar, (202) 224-3244, Megan Descamps
Senator Heidi Heitkamp, (202) 224-2043, Daniel H Geldon Chief of Staff
Senator Tammy Duckworth, (202) 224-2854, Kalina Bakalov – Deputy Chief of Staff and Legislative Director
Senator Kirsten Gillibrand, (202) 224-4451, Alyson Northrup
Senator Jon Tester, (202) 224-2644, Hannah VanHoose
Senator Bernie Sanders, (202) 224-5141, Chief of Staff Michaeleen Crowell
Senator Sherrod Brown, (202) 224-2315, Abigail Duggan
Senator Debbie Stabinow, (202) 224-4822, Alex Graf
Senator Tom Udall, (202) 224-6621,
Senator Tim McKaine , (202) 224-4024, Healthcare Legislative Assistant Kristen Molloy
Senator Mark Warner, (202) 224-2023, Marvin Figueroa
Senator Gary Peters, (202) 224-6221, Greg Mathis