Medically connected legislators (the legislators that are connected to medicine, either through themselves, or a family member):

House
Brian Babin, Ami Bera, Joyce Beatty, Larry Bucshon, Michael Burgess, Cori Bush, Yadira Caraveo, Buddy Carter,  Sean Casten, Joaquin Castro, Judy Chu, Lori Chavez-DeRemer, Sheila Cherfilus-McCormick, Steve Cohen, Angie Craig, Scott DesJarlais, Neal Dunn,  Drew Ferguson, Paul Gosar, Mark Green, Andy Harris, Diana Harshbarger, Ronny Jackson, John Joyce, Robin Kelly, Jen Kiggans, Kevin Kiley,  Ann Kuster, Julia Letlow, Morgan Luttrell, Roger Marshall, Doris Matsui, Lucy McBath, Rich McCormick, Cory Mills, Mariannette Miller-Meeks,  Frank Mrvan, Greg Murphy, Donald Norcross, Ilhan Omar,  Deborah Ross, Raul Ruiz, John Sarbanes, Kim Schrier, Austin Scott, Mike Simpson, Elissa Slotkin, Chris Stewart, Dale Strong, Emilia Sykes, Glenn Thompson, Lauren Underwood,  Jeff Van Drew,  Brad Wenstrup,  Rob Wittman,  Ron Wyden

Senate
John Barrasso, John Boozman, Bill Cassidy, Rand Paul

House

Alma Adams, Pete Aguilar, Colin Allred, Nanette Barragan, Joyce Beatty, Ami Bera, Stephanie Bice, Sanford Bishop, Jamaal Bowman, Josh Brecheen, Shontel Brown, Cori Bush, Salud Carbajal, Yadira Caraveo, Tony Cardenas, Andre Carson, Troy Carter, Greg Casar, Joaquin Castro, Sheila Cherfilus-McCormick, Judy Chu, Juan Ciscomani, Yvette Clarke, Emanuel Cleaver, Jim Clyburn, Tom Cole, Bonnie Watson Coleman, Lou Correa, Jasmine Crockett, Henry Cuellar, Sharice Davids, Danny Davis, Don Davis, Monica De la Cruz, Anthony D’Esposito, Mario Diaz-Balart, Byron Donalds, Veronica Escobar, Adriano Espaillat, Dwight Evans, Teresa Leger Fernandez, Valerie Foushee, Lois Frankel, Maxwell Frost, Ruben Gallego, John Garamendi, Chuy Garcia, Mike Garcia, Robert Garcia, Sylvia Garcia, Carlos Gimenez, Jimmy Gomez, Tony Gonzales, Vincente Gonzalez, Jenniffer Gonzalez-Colon, Raul Grijalva, Jahana Hayes, Steven Horsford, Glenn Ivey, Jonathan Jackson, John James, Pramila Jayapal, Hakeem Jeffries, Hank Johnson, Sydney Kamlager-Dove, Robin Kelly, Ro Khanna, Andy Kim, Young Kim, Raja Krishnamoorthi, Barbara Lee, Sheila Jackson Lee, Mike Levin, Ted Lieu, Anna Paulina Luna, Nicole Malliotakis, Brian Mast, Doris Matsui, Lucy McBath, Jennifer McClellan, Gregory Meeks, Rob Menendez, Grace Meng, Kweisi Mfume, Marc Molinaro, Alex Mooney, Gwen Moore, Grace Napolitano, Joe Neguse, Eleanor Holmes Norton, Alexandria Ocasio-Cortez, Ilhan Omar, Burgess Owens, Donald Payne Jr, Mary Peltola, Marie Gluesenkamp Perez, Ayanna Pressley, Della Ramirez, Lisa Blunt Rochester, Raul Ruiz, Maria Elvira Salazar, Linda Sanchez, Bobby Scott, David Scott, Terri Sewell, Darren Soto, Melanie Stansbury, Michelle Steel, Marilyn Strickland, Emilia Sykes, Mark Takano, Shri Thanedar, Bennie Thompson, Rashida Tlaib, Jill Tokuda, Norma Torres, Ritchie Torres, Lori Trahan, ‘Lauren Underwood, David Valadao, Juan Vargas, Gabe Vasquez, Marc Veasey, Nydia Velazquez, Maxine Waters, Nikema Williams, Frederica Wilson,

Senate

Cory Booker, Catherine Cortez Masto, Ted Cruz, Tammy Duckworth, Mazie Hirono, Ben Ray Lujan, Bob Menendez, Alex Padella, Marco Rubio, Tim Scott, Rev. Raphael Warnock

House

Alma Adams, Colin Allred, Joyce Beatty, Sanford Bishop, Jamaal Bowman, Shontel Brown, Cori Bush, Andre Carson, Troy Carter, Sheila Cherfilus-McCormick, Yvette Clarke, Emanuel Cleaver, Jim Clyburn, Bonnie Watson Coleman, Jasmine Crockett, Danny Davis, Don Davis, Byron Donalds, Dwight Evans, Valerie Foushee,  Maxwell Frost, Jahana Hayes, Steven Horsford, Glenn Ivey, Jonathan Jackson, John James,  Hakeem Jeffries, Hank Johnson, Sydney Kamlager-Dove, Robin Kelly, Barbara Lee, Sheila Jackson Lee, Lucy McBath, Jennifer McClellan, Gregory Meeks, Kweisi Mfume, Marc Molinaro, Gwen Moore, Joe Neguse, Eleanor Holmes Norton, Ilhan Omar, Burgess Owens, Donald Payne Jr, Ayanna Pressley,  Lisa Blunt Rochester, Bobby Scott, David Scott, Terri Sewell, Marilyn Strickland, Emilia Sykes, Bennie Thompson, Rashida Tlaib, Ritchie Torres, Lauren Underwood,  Marc Veasey, Maxine Waters, Nikema Williams, Frederica Wilson,

Senate

Cory Booker, Catherine Cortez Masto, Ted Cruz, Tammy Duckworth, Mazie Hirono, Ben Ray Lujan, Bob Menendez, Alex Padella, Marco Rubio, Tim Scott, Rev. Raphael Warnock

House

Pete Aguilar, Nanette Barragan, Salud Carbajal, Yadira Caraveo, Tony Cardenas, Greg Casar, Joaquin Castro, Juan Ciscomani, Lou Correa, Henry Cuellar, Monica De la Cruz, Anthony D’Esposito, Mario Diaz-Balart, Veronica Escobar, Adriano Espaillat, Teresa Leger Fernandez, Maxwell Frost, Ruben Gallego, John Garamendi, Chuy Garcia, Mike Garcia, Robert Garcia, Sylvia Garcia, Carlos Gimenez, Jimmy Gomez, Tony Gonzales, Vincente Gonzalez, Jenniffer Gonzalez-Colon, Raul Grijalva,  Barbara Lee, Mike Levin, Anna Paulina Luna, Nicole Malliotakis, Brian Mast, Rob Menendez, Alex Mooney, Grace Napolitano, Alexandria Ocasio-Cortez, Marie Gluesenkamp Perez, Della Ramirez, Raul Ruiz, Maria Elvira Salazar, Linda Sanchez, Darren Soto, Norma Torres, Ritchie Torres, Lori Trahan, David Valadao, Juan Vargas, Gabe Vasquez, Nydia Velazquez,

Senate

Catherine Cortez Masto, Ted Cruz, Ben Ray Lujan, Bob Menendez, Alex Padella, Marco Rubio

House

Judy Chu, Young Kim, Ted Lieu, Doris Matsui, Grace Meng, Michelle Steel, Marilyn Strickland, Mark Takano,  Jill Tokuda,

Senate

Tammy Duckworth, Mazie Hirono

Legislators who have served in the armed forces:

House

Mark Amodei, Jake Auchincloss, Brian Babin, Don Bacon, Jim Baird, Jim Banks, Jack Bergman, Sanford Bishop, Mike Bost, Larry Bucshon, Kat Cammack, Salud Carbajal, Mike Carey, Andrew Clyde, Eli Crane, Rick Crawford, Dan Crenshaw, Jason Crow, Warren Davidson, Don Davis, Chris Deluzio, Neal Dunn, Jake Ellzey, Pat Fallon, Scott Franklin, Mike Gallagher, Ruben Gallego, Mike Garcia, Jared Golden, Tony Gonzales, Mark Green, Brett Guthrie, Andy Harris, Clay Higgins, Chrissy Houlahan, Wesley Hunt, Jeff Jackson, Ronny Jackson, John James, Bill Johnson, Trent Kelly, Jen Kiggans, Nick LaLota, Ted Lieu, Anna Paulina Luna, Morgan Luttrell, Brian Mast, Rich McCormick, Mariannette Miller-Meeks, Max Miller, Cory Mills, Seth Moulton, Troy Nehls, Zach Nunn, Jimmy Panetta, Greg Pence, Scott Perry, August Pfluger, Guy Reschenthaler, Hal Rogers, Pat Ryan, Bobby Scott, Mikie Sherrill, Elissa Slotkin, Greg Stuebe, Mike Thompson, William Timmons, Derrick Van Orden, Michael Waltz, Brandon Williams, Joe Wilson, Steve Womack, Ryan Zinke

Senate

Richard Blumenthal, Tom Carper, Tom Cotton, Tammy Duckworth, Joni Ernst, Mark Kelly, Ed Markey, Roger Marshall, Gary Peters, Jack Reed, Rick Scott, Dan Sullivan, Roger Wicker, Sheldon Whitehouse, Todd Young

 

Legislators who have a history of activism in some area:

House

Suzanne Bonamici, Cori Bush, Sean Casten, Joaquin Castro, David Cicilline, Jim Clyburn, Jasmine Crockett, Madeleine Dean, Diana DeGette, Dwight Evans, Teresa Leger Fernandez, Michelle Fischbach, Mike Flood, Maxwell Frost, Diana Harshbarger, Jared Huffman,Jonathan Jackson, Pramila Jayapal, Mike Johnson, Ro Khanna, Daniel Kildee, Ann Kuster, Barbara Lee, Stephen Lynch, Kweisi Mfume, Greg Murphy, Eleanor Holmes Norton, Burgess Owens, Gary Palmer, Brittany Pettersen, Chellie Pingree, Jamie Raskin, Chip Roy, John Sarbanes, Mary Gay Scanlon, David Trone, Michael Waltz,

Senate

Sherrod Brown, John Boozman, Bill Cassidy, Chris Coons, Steve Daines, Tammy Duckworth, Kirsten Gillibrand, Mike Lee, Jeff Merkley, Jack Reed, JD Vance, Raphael Warnock, Elizabeth Warren, Ron Wyden

Legislators who are new to Congress:

House

Mark Alford, Becca Balint, Aaron Bean, Josh Brecheen, Nikki Budzinski, Eric Burlison, Yadira Caraveo, Greg Casar, Lori Chavez-DeRemer, Sheila Cherfilus-McCormick, Juan Ciscomani, Mike Collins, Eli Crane, Jasmine Crocket, Don Davis, Monica De la Cruz, Chris Deluzio, Anthony D’Esposito, John Duarte, Chuck Edwards, Mike Ezell, Brad Finstad, Mike Flood, Valerie Foushee, Maxwell Frost, Russell Fry, Robert Garcia, Dan Goldman, Harriet Hageman, Erin Houchin, Val Hoyle, Wesley Hunt, Glenn Ivey, Jeff Jackson, Jonathan Jackson, John James, Sydney Kamlager-Dove, Tom Kean Jr, Jen Kiggans, Kevin Kiley, Nick LaLota, Greg Landsman, Nick Langworthy, Mike Lawler, Laurel Lee, Anna Paulina Luna, Morgan Luttrell, Seth Magaziner, Celeste Maloy, Jennifer McClellan, Rich McCormick, Morgan McGarvey, Rob Menendez, Max Miller, Cory Mills, Marc Molinaro, Nathaniel Moran, Jared Moscowitz, Kevin Mullin, Wiley Nickel, Zach Nunn, Andy Ogles,  Marie Glusenkamp Perez, Mary Petrola, Brittany Pettersen, Della Ramirez, Pat Ryan, Andrea Salinas, John Sarbanes, Hillary Scholten, Keith Self, Eric Sorensen, Dale Strong, Emilia Sykes, Shri Thanedar, Jill Tokuda, Derrick Van Orden, Gabe Vasquez, Brandon Williams, Rudy Yakym, Ryan Zinke

Senate

Katie Britt, Ted Budd, John Fetterman, Markwayne Mullin, Pete Rickets, Eric Schmitt, JD Vance, Peter Welch

Legislators who have served in Congress for 20+ years (1980-2005) 

House before 1997

Sanford Bishop, Earl Blumenauer, Ken Calvert, Jim Clyburn, Rosa DeLauro, Lloyd Doggett, Steny Hoyer, Marcy Kaptur, Shirley Jackson Lee, Zoe Lofgren, Frank Lucas, Jerrold Nadler, Richard Neal, Eleanor Holmes Norton, Frank Pallone, Nancy Pelosi, Hal Rogers, Bobby Scott, Chris Smith, Nydia Velazquez, Maxine Waters,

House after 1997

Robert Aderholt, Michael Burgess, John Carter, Emanuel Cleaver, Tom Cole, Jim Costa, Henry Cuellar, Danny Davis, Diana DeGette,  Mario Diaz-Balart, Anna Eshoo, Virginia Foxx, Kay Granger, Sam Graves, Al Green, Raul Grijalva, Brian Higgins, Darrell Issa, Lamborn, Rick Larsen, John Larson, Barbara Lee, Stephen Lynch, Doris Matsui, Michael McCaul, Betty McCollum, James McGovern, Patrick McHenry, Gregory Meeks, Gwen Moore, Grace Napolitano, Bill Pascrell, Cathy Rodgers, Mike Rogers, Dutch Ruppersberger, Linda Sanchez, Jan Schakowsky, Adam Schiff, Pet Sessions, Debbie Wasserman Schultz, David Scott, Brad Sherman, Mike Simpson, Adam Smith, Mike Turner, Benny Thompson, Mike Thompson,

 

Senate before 1997

Chuck Grassley, Patty Murray, Ron Wyden

Senate after 1997

Maria Cantwell, Tom Carper, Susan Collins, John Cornyn, Mike Crapo, Dick Durbin, Lindsey Graham, Lisa Murkowski, Jack Reed, Chuck Schumer, Debbie Stabenow, John Thune

Email:

We, Doctors and Patients of Courage, represent the 100 million Americans who have legitimate pain or the doctors who are trying to treat them. We are looking for legislators—of which you could be one—who will put the country’s interest over his/her own. As a newly-elected representative, we would like to help you understand a major problem the government has caused. We are asking you to help fix the ignorance of the government and the standard jumping into a quagmire of ineffective solutions that they are so good at creating. The problem, as we see it, is one of money. More money is being spent than is being recovered, but the organizations recovering the money spread the lies and throw the blame on others, to justify their own existence.

We are throwing money away because of a government-created, fake “crisis” with the only intent of making money for special interest law enforcement groups and agencies. Read Ronald Libby’s masterpiece “The Criminalization of Medicine” and learn the history of what you have walked into. Learn the truth on www.doctorsofcourage.org. The government is

actually creating addiction by the increased anxiety of legitimate patients who need legitimate medicines to maintain a quality of life. We can give you the information on how government ignorance and mishandling of the facts is actually creating the problem you are attempting to control, and won’t with your current methods. The centuries-old percentage of addiction has always been 1%. It was 1% when the fake government agencies decided to criminalize the legitimate use of opioids in the 1990’s. It is now climbing (slightly, to 1.3%) due to government-created anxiety (the #1 acidifier of the body) in legitimate patients now being tortured with lack of treatment.

Please become a supporter of stopping this never-ending waste of taxpayer’s money. Learn what WILL work. Stop destroying the lives of 33% of the citizens over the 1% that you aren’t helping anyway. Learn how you can help be learning the REAL cause of Addiction and Drug Abuse, which can be seen on a video on https://www.doctorsofcourage.org/videos/.

Linda Cheek, MD, the president of Doctors of Courage, is happy to speak to any group that would like to get together to work on what will really solve the problem. Her website is www.lindacheekmd.com

Respectfully,

Name
www.doctorsofcourage.org

FB post:

The country needs a legislator—maybe you—who puts the country’s interest over his/her own. We are throwing money away because of a government-created, fake “crisis” with the only intent of making money for special interest law enforcement groups and agencies. Read Ronald Libby’s masterpiece “The Criminalization of Medicine” and learn the history of what you have walked into. Learn the truth on www.doctorsofcourage.org. The government is actually creating addiction by the increased anxiety of legitimate patients who need legitimate medicines to maintain a quality of life. We can give you the information on how government ignorance and mishandling of the facts is actually creating the problem you are attempting to control, and won’t with your current methods. The centuries-old percentage of addiction has always been 1%. It was 1% when the fake government agencies decided to criminalize the legitimate use of opioids in the 1990’s. It is now climbing (slightly, to 1.3%) due to government-created anxiety (the #1 acidifier of the body) in legitimate patients now being tortured with lack of treatment.

Please become a supporter of stopping this never-ending waste of taxpayer’s money. Learn what WILL work. Stop destroying the lives of 33% of the citizens over the 1% that you aren’t helping anyway. Learn how you can help be learning the REAL cause of Addiction and Drug Abuse, which can be seen on a video on https://www.doctorsofcourage.org/videos/. Linda Cheek, MD, the president of Doctors of Courage, can speak to any group to work on what will really solve the problem. Her website is: www.lindacheekmd.com

Tweet:

Needed: decrease the deficit and stop attacks on citizens by rogue agencies supporting themselves with US tax dollars. For the truth about the fake, government-created “opioid crisis”, go to www.doctorsofcourage.org. Stop
throwing money down a bottomless pit.

Tips for Writing Your Patient Testimony (PT):

We ARE being judged – although affected by our pain or disability, we may be thought to be impaired by ‘drugs’ if our letters are rambling, lengthy or off topic.

• Be brief as possible, polite, clear, concise.
• Explain your pain condition/diagnosis – 3 or 4 which most affect your life
• Discuss failed treatments: PT, OT, Chiro, Devices, Surgeries, Procedures, etc,
• Non opioids ineffective – Nsaids, mood stabilizers, anti epileptics, etc
• Discuss how your function/life affected – work, driving, chores, entertainment, self care, travel, finance, family, etc.
• Explain all treatments, non opioids failed and medication/PM was a last resort and that you are incurable and your condition will likely worsen with aging
• Mention if inadequate pain control has been detrimental to your health – high BP, stroke, other physiological problems.
• Share how you have been a model patient on a strict pain contract with regular UAs, pill counts, utilizing one pharmacy, etc.
• Explain if you have to travel long distances, difficulties with paying for additional appointments and pharmacy co-pays
• If cut from meds/dropped by doctor – explain the above and how your function and life has been affected
• If you still have meds, discuss what your function/life would be like without
• Please do NOT use the words ‘drugs’, ‘narcotics’ or ‘addicts’. It’s been suggested to us that we use ‘people with addiction’. *Avoid ‘opioid’ or ‘opiate’ when possible, using ‘pain reliever’ or ‘pain relief’. Try not to use acronyms (UA, PM, etc.) as others may not understand.

To all letter writers, the guidelines above were about patient testimonies. What we are communicating may be a little different.
Think of WHO you’re writing and what you’re trying to convey to them while remembering, in the guidelines above, the basic rules that must apply, ex.(no profanity, clear & concise, not too lengthy). If you’re mentioning your diseases or injuries don’t write a novel. State the main ones and move on, or you risk losing the reader.

Remember that this first letter will be the most difficult to compose. It may take some time to think about what you’re trying to convey.
But once you’re done, the hard part is over. If you compose this on your computer or phone SAVE YOUR WORK!!
Then with the next target, if changes are needed, it’s easy to change it and SAVE!
In the above guidelines where it’s telling you how to write a testimony, for this project you may want to do that or you may have other information you’re trying to convey.

Here is a letter by Heather on Medium that is worth copying and using by both chronic pain patients and professionals.  I would break it down, however, and send it in several separate letters. A letter this long would not be read by health staff or the legislator.  Put the main point you want to get across in the first paragraph. Then expand on it, but not more than a page long.

An Open Letter To All Who Hold Public Office in America From Painful Disease Patients

Described by Doug Marsh of Chronic Pain Sufferer Rights Leadership Commission. Feel free to use any of these descriptions in your letters to Congress.

 

Chronic Pain touches us all in so many different ways.

Physical Effects

Far too often after an illness or pain caused by an injury, we believe the treatment or therapy originally given to us has cured us. But then later on down the road the pain starts again, most of the time as a dull and periodic annoyance, just slightly more irritating than a common headache or another pain we might take an Aspirin for. As time progresses this inconvenience starts to become a more noticeable annoyance happening more and more frequently. To deal with this pain we start taking more and stronger over-the-counter pain relievers like Ibuprofen, Tylenol and Aleve to deal with this irritation or simply just to do our jobs, or even play with our children.

Eventually, the irritating pain starts becoming an interference effecting how we all do even simple tasks like making the bed or carrying out the garbage or even taking a walk. We start do things like favoring different parts of our bodies, posturing or carrying ourselves differently in an attempt to feel less pain. Most of the time we do not even realize that we are walking bent over or slouching while we are standing or sitting. All we know is that we don’t hurt as much at this time.

Next this interference caused by our pain starts to become a disruption, effecting our lives in various ways until one morning we wake up and can’t move without experiencing excruciating pain. We start missing work or backing out of social activities because we just don’t feel well enough to participate. We don’t know what’s happening to us—all we know is that the pain we are feeling has been getting worse every day.

Our employers start to become disappointed with our performance along with our work attendance and we can’t explain it to them. Now, every aspect of our lives has become difficult and our abilities and actions become more difficult and life itself is interrupted. What was once a reflex or a simple action now takes thought and planning to do because we want to avoid the pain every action now causes.

We want answers. We want an explanation other than “as we get older our aches and pains get worse”. So we seek the explanation by going to doctor after doctor to have tests done and seek relief.  We subject ourselves to torture simply to find out what is causing our everyday pain. We are jabbed to the bone with needles that they then put an electrical current though in order to test our nervous systems. We are given steroid and epidural injections, spinal cord stimulator implants and other surgical procedures in an attempt to alleviate the pain and get our lives back to normal. Then, after all that fails we are prescribed everything from massive amounts of ibuprofen, gabapentin or Lyrica to opioid pain medications to manage our pain. But still no one can fix our ailments or injuries. Finally we succumb to our ailment or injury because we have come to the realization that pain now controls our lives.

Financial Effects

For years we took pride in our jobs and worked as hard as possible to get raises and promotions. We always showed up to work, even sick at times because we had families to support. There is no way we will ever ask them to go without.

Then one day our pain starts causing us to miss work, or it starts effecting our job performance. Our paychecks start suffering and our medical bills start adding up. We have family medical leave (FMLA) and short term disability, but that starts running out after 90 days. So we beg our doctors to release us and attempt to return to work so we don’t lose our jobs.

What we find out is that these injections and surgical procedures that were supposed to alleviate our pain only succeeded in making it worse and we start having to go home early and calling off work once again. Then when our employers can no longer afford to carry us anymore, we lose our jobs.

So now we have lost our employer sponsored health insurance, our income, and our sense of self-worth. Our pain won’t allow us to work and we have to go to court and fight tooth and nail for what is rightfully ours. Our Social Security Disability that we have paid into for all the years we were in the workforce often takes years to get. So now we are disabled, have no income and no health insurance. Our medical bills are adding up, and we have spent through our savings nest eggs or cashed in our 402k retirement, but still we have to wait on the federal government for our SSDI and do back flips through hoops to get what is rightfully ours. We are both physically and financially broken at this time.

Emotional effects

Because we are stubborn, we refuse to let pain slow us down. We stay positive and hopeful even though we are miserable. We force ourselves out of bed every day and go to work in agony. While at work, we put on our best, “I’m ok face and work through the pain but fight internally with ourselves daily on how much longer we can work.

We are gullible by believing and going through painful and expensive testing, along with surgical procedures that are supposed to make our lives great again.
We see the ads on television and we believe what pain doctors tell us about miracle surgeries and magical implants so we agree to it all.
We are embarrassed by being taken by these doctors who promise us a pain free future.
We start feeling helpless when we can’t work anymore because of our pain. Our desperation grows when we can’t earn the money to pay our bills.
We get depressed and we start feeling as if we are letting our families down.
We feel inadequate and irritated because we have to spend our life savings to put a dent in the medical bills. Then we feel anger at ourselves and depressed because we feel we are the cause of all the above.
Finally beaten by the pain, the financial and the emotional problems caused by our pain, we accept our future no matter what the outcome.
We are entirely broken now and totally unsure of our future.
Our bank accounts suffer and our relationships are stressed. Our lives are in complete turmoil and we are finding out that few really care.

Here is a copy of a letter that can be modified to fit your needs and sent to your representatives:

(To whom it may concern)
Dear____

My name is ______ and I am writing this letter on behalf of myself and the countless others I am connected with who also suffer from Chronic Pancreatitis (ChP). According to Dr. David Whitcomb from the University of PA, Chronic pancreatitis is more painful than cancer, diabetes, and most other chronic illnesses. I have suffered from this disease due to gallstones for 14 years and I can attest to the debilitating level of pain it incurs. But more than just pain, ChP affects other organs sharing nerves with the heart and a blood supply with the spleen.

Any time we have a flare it can mean death for those of us who suffer with pancreatitis. We also suffer with mal-nutrition, PTSD and many have other conditions like GERD, diabetes, etc as well.
There is no curative treatment for pancreatitis other than transplant surgery which is not covered by most insurance companies. Controlling the symptoms is the only way to have ANY quality of life I no longer have the pain relief needed to allow me to function even in the most minimal part time job. every day,. I am actively being harmed by the unscientific and biased treatment standards being forced on my doctors, insurance companies and pharmacies by both the federal and state levels of government. I want to live a productive life despite the challenge of a very painful disease. However, my quality of life has been taken away from me due to government overreach. The current “opioid epidemic” has been vastly mischaracterized and misdirected in the dominant public narrative.

The federal government, in deciding to stop people from becoming addicted to opioids, has chosen to make it extremely difficult for people with chronic pain conditions to continue getting the very medications that make life tolerable and worth living. There are many politicians and government departments who have made our lives miserable. For example, the CDC has written opioid treatment guidelines which are now known to be fraudulent. (Cite?) The guidelines were based on “research” that was deliberately biased to over-emphasize the real risks of treating chronic pain with opioids (Cite?). Thus, it denied the reality that opioids are currently the MOST effective means of safely and reliably treating millions of people who would otherwise be totally disabled by pain.

The guidelines are also being enshrined in highly restrictive state laws with a record of malicious and unwarranted prosecution of doctors by the DEA. (Cite) The DEA has completely ruined the “doctor-patient relationship” that I used to receive in treating my painful disease. Now doctors fear for their licenses instead of caring for patients. The FDA and Dept. of Health & Human Services have also become involved in this travesty. There are legislators and lobbyists that have become involved as well, and all of them are directly responsible for denial of effective pain management to tens of thousands of patients. Chronic pain patients are being involuntary denied medications that have been effective and safe for them for decades. They face reluctant doctors, wary pharmacists and insurance companies, and the frequent demand to prove that they are not addicts.

Suicides due to overwhelming pain have already happened and more are anticipated. (Give examples) It is not fair to punish one group of society in an effort to improve another group that chooses to abuse the medications we need to live our lives in a productive way. Our lives literally depend on these medications to function. All of this has also caused undue financial stress on an already stressful situation which intensifies our symptoms. My last Urine Analysis was $1500.00, twice a year makes it $3000.00 more on top of an already tight budget. It is $220.00 every time I walk into my pain specialist office. In addition, now my state wants to make us get our medications filled every 7 days which again places undue financial burden upon my family as well as stress on my already weary body. We are not criminals, we are only seeking relief from severe pain.

It is my plea that you do everything possible to stop the war against chronic pain patients immediately. The only ethically and medically sound way forward is immediate withdrawal of the CDC guidelines. They then need to be immediately replaced by better qualified stakeholder groups including both pain management specialists and chronic pain patients. The DEA should also be required by Congress to cease prosecution of doctors whose only “crime” is an attempt to serve the medical needs of their patients.

I have been advocating for and supporting those with chronic pain for 10 years and it is my conviction that those who have no experience suffering from debilitating pain have no right legislate pain management restrictions. Because for us, it is not about getting high, it is about getting by.

Meeting with your members of congress is one of the most effective ways that you can influence the legislative process. Members are more likely to support positions that their constituents feel strongly about, and there is no better way to display your passion for an issue than by taking the time to have a face-to-face meeting. This is especially important on issues where the opposition, such as the Department of Justice and DEA, is lobbying strongly against legislation you support, or on issues that are relatively new, complex, and sometimes controversial, such as the “opioid crisis” where there is an opportunity to educate policy makers. Meeting with your legislators can be easy and fun. You can meet one-on-one or you can plan a meeting with other activists in your area.

Setting up a meeting

1. Plan, Plan, Plan. If you are willing to invest the time to get a face-to-face meeting with your legislator, be willing to think through what you hope to accomplish from the meeting and how best to go about reaching your goal. Consider what issue you most want to focus on and what your main message on this issue is. What is your legislator’s position on that issue and what do you want your legislator to do after the meeting? It is also important to consider whether having other people join you in the meeting would help you to convey your main message. Bring any relevant materials regarding your topic to leave behind.
2. Find a date and location. If you are meeting with a federal legislator, you will need to find out when your legislator is back in the district. Check their website for the most current information about when they are on recess. If you plan to meet with a state or local legislator, be sure to check their website for details about where the office is.
3. Request the meeting.Your request for a meeting should be initiated by mailing or faxing a letter to the legislator’s scheduler. Call the local office and ask for the names of the legislator’s scheduler. Next, fax or mail a letter requesting a meeting, putting it to the attention of the scheduler. You should indicate how flexible you are with the time of the meeting, as this will increase your chances of getting a meeting during busier days. In a toggle below there is a sample meeting request letter
4. Follow-up by phone. Within 24 hours of sending the fax or when you think the letter will have arrived, call the scheduler and confirm his or her receipt of the note. If you have not heard back in three to four days, call the scheduler again and ask if a meeting has been arranged.

 

Additional tips and resources

1. Consider meeting with the health issues staff person. If the legislator is unavailable to meet, you could actually benefit by meeting with the health issues staff person instead, especially as more people join the cause and also communicate with him/her. The health issues staff person is the office “expert” on the issue and thus has influence with the legislator. If you are persistent and effective, you may be able to parlay a first meeting with an aide into a long-term relationship with that office and/or a meeting directly with the legislator.
2. Have Reasonable Expectations. Don’t expect your legislator to change his/her position after your 20-minute meeting. You should view your meeting as one critical step among many to engage your legislator on the issue.

Sample Meeting Request Letter

Date

Legislator title and name
Address

ATTN: Scheduler’s Name, fax number

Dear [Title Last Name]: I am writing to request a meeting with you and your aides on the subject of the opioid epidemic. [If appropriate, briefly mention any credentials that would convince the scheduler to make you a priority.]

[Discuss the reasons for your current request for a meeting—e.g., developments in a piece of legislation you’re concerned about. For example:] I wish to request a few minutes of your time to discuss the recently introduced bill, [bill name].

I will be available to meet with you anytime on the [date(s)] and would be delighted to talk with you then about [the bill]. I would like to bring with me [list colleagues, or other are activists if applicable], also from [your state/district]].

I can be reached at the phone number (s) below, and look forward to hearing from you soon. Respectfully yours,

Dr./Mr./Mrs. _____________
Institution (if appropriate, and you may use DoctorsofCourage as an organization)
Address
Phone Numbers

How to Have an Effective Visit With Your Policy Maker

 

Once you have your meeting set, you’ll need to prepare and know what to expect. Here are some tips to ensure you have a productive meeting:

Getting the most out of your meeting

1. Identify your main message. Before the meeting, determine what the main message that you want to convey to your legislator is. For instance, “please play a leadership role in advancing policies to stop government overreach into medicine” or “please vote for bills that will ensure proper pain management for chronic pain patients.”
2. Determine roles for participants. If more than one person is meeting with the legislator designate a group leader to open and close the meeting and a different person to present each issue or main message.
3. Prepare and practice for the meeting. It’s always a good idea to run-through what you intend to say before the meeting itself. If you are meeting with a group of people, have each person practice their part in front of the group. Time permitting—hold a dry run of the entire meeting. Remember to dress nicely, business attire is appropriate. If you are meeting in Washington, D.C. business/formal dress is required in the Capitol building.
4. Introduce yourself. Tell your legislator or staff person your name, where you are from, and that you are a constituent. If you represent an organization, note its name, where the group is located, and the size of its membership. If you are associated with a specific institution, identify it and your field of study (i.e. pain management). If you have any family, social, business, or political ties to the legislator, mention them as well. If possible, thank the member for a good stand they recently took on an issue and/or mention if you voted for the member. At a minimum, thank them for taking the time to meet with you.
5. Take the initiative. State clearly and concisely what issue you want to discuss, what your position is, and what action you want the member to take. Follow this with facts about why they should take your position. Ask questions the legislator can respond “yes” or “no.” Press politely for a commitment, unless the member is clearly opposed to your position or to making a commitment.
6. Make a local connection. Stress how the issue will affect the legislator’s district or state and, if possible, tell a personal story that highlights your experience with the issue and why you care about it.

Additional tools and resources

1. Follow up. Always follow up with a prompt thank you letter. In the letter, reiterate your key points and any commitments the legislator made to you. Include all follow-up information you promised to provide.
2. Let us know how it went. Be sure to let us know the results of your meeting. The more details you can provide us with the better.
3. Bring a “leave-behind” document. Give the legislator a brief fact sheet (one to two pages) that outlines your position and explains what the bill does (if there is one) and why they should support your viewpoint.
4. Drop names. Mention any other organizations, important individuals, government officials, and legislators that support your position.
5. Don’t answer what you don’t know. It’s okay to not know all the answers. Answer questions to the best of your ability, and if you don’t know an answer, admit it. This ensures you maintain credibility and it provides an opportunity for a relevant follow-up letter to provide any additional information.
6. Don’t get discouraged. Members of the legislature are very busy and could be called out of the meeting—or not available at all—leaving you with their legislative aide that handles the issue. Don’t let this discourage you. Meeting with a staff member can be equally or even more productive than meeting with the member. Staff can have tremendous influence over legislators and in many cases know far more about the legislation than the legislators themselves. Be sure to ask the staff person to convey your views and legislative requests to their boss.

Stay on topic. The legislator may hijack the agenda or waste valuable time by bringing up unrelated issues. While it is important to be cordial and flexible, this is a meeting for you to relay your concerns to an elected official. Quickly acknowledge and address their issue and redirect the discussion back to the agenda. Don’t let them take you off-course for more than a moment.