My Story: Headache on The Hill 2018

My Story: Headache on The Hill 2018

By Jeanette Rotondi.

The National Pain Report occasionally shares acts of activism by the chronic pain community. This is another example of advocacy, recently conducted with Congress in Washington, D.C.

Headache on the Hill is an advocacy event held annually on Capitol Hill and hosted by The Alliance of Headache Disorders Advocacy. It is an important event for those advocating for migraine and headache disorders. Each year, advocates gather to support one another and bring about legislative action with their states’ representatives. Members must first apply and be accepted to participate in HOH each year, and then go through training and seminars to better prepare themselves for the Congressional visits. This year chronic pain, specifically, was part of the actionable request being made to Congress. There were 156 advocates from 40 states at Headache On The Hill .

For five years now, I have been an ambassador with U.S. Pain Foundation which was a sponsoring organization of this advocacy. The organization has helped me find a voice in advocating for chronic pain solutions and a way to give my pain a purpose and a voice. It also sponsored both my husband, Dennis, and I, as well as several other colleagues to the event.

This year’s “ask” was particularly exciting to me because it united the migraine, headache disorder and chronic pain community on one initiative. We asked representatives to co-sponsor Bill S2260/HR4733, also known as the “Opioids and STOP Pain Initiative Act of 2017.” The purpose of this bill is to improve the understanding of pain and increase funding for the discovery and development of safer and more effective treatment and preventative intervention for pain, migraine and headache disorders. In no way does the bill promote removing opioid treatment from patients benefiting from it.

Advocates are requesting $5 billion in emergency appropriations over 5 years for new NIH (National Institute of Health) research to understand pain and develop safer, non-addictive, more effective treatment and preventative interventions. Furthermore, we want this to be used to discover and develop medical-assisted and opioid-overdose reversal treatments.

Let me say the obvious – With 30% of Americans having chronic pain, this bill addresses a huge audience and perhaps a bigger need. Some obvious data points that we shared:

• Chronic pain is a complex disease with many types.
• Back and neck pain, followed by migraine are the first and second leading cause of global disability.
• With few treatment options, 6.2 million chronic pain patients are prescribed opioids each year.
• According to the AHDA the chronic pain and opioids crisis combine to create the costliest healthcare problem ever, a staggering $1.1 trillion per year. Pain costs $560 to $635 billion to treat while opioid addiction costs $504 billion.

The AHDA stated that more NIH research for pain and opioids is a fiscal imperative. To put it perspective, remember that in 2016 NIH funded 29 times more money for research of cancer than for pain.

Our HOH Adventure:

Our first official leg of HOH was a three-hour Advocacy Training. The most essential part of the training was to have a clear understanding of the “ask”, the actionable request we were making to our Congressmen and Senators. We had to have a clear understanding of bill HR4733, aka “Opioids and STOP Pain Initiative Act of 2017” and ask our representatives to co-sign this bill.

Our team from New Jersey included six individuals, one person with cluster headache and 4 of us with chronic migraine; myself also having additional chronic pain conditions. The sixth was my husband, a health care provider and support person to myself, a person with chronic pain and chronic migraine.

The second leg of Headache on the Hill were the “Hill Visits” or meetings with our NJ representatives. We had 6 meetings in total scheduled, with the offices of Senator Cory Booker, Senator Bob Menendez, Representative Frank Pallone, Rep. Leonard Lance, Rep. Josh Gottheimer, Rep. Chris Smith and Rep. Bonnie Watson Coleman.

At each office we told our individual stories and why Bill S2260/HR4733 is important to us personally. We described a narrative using our individual experiences and mostly received positive responses.

For example, at the office of Senator Cory Booker, we met with Health Policy staff member, Kimberly Miller-Tolbert, who stated “this bill definitely seems along the lines of something the Senator would support.” At the office of Senator Bob Menendez, after meeting with Health Policy staff member, Doug Levinson, he stated, “I am going to run this upstairs, we should hop on this bill.” Marissa Kovacs, Legislative Director for Representative Chris Smith shared information about his involvement in the Rare Disease Community. Ms. Kovacs had quite a good understanding of the stigma that comes with invisible illness. She shared with us that she has a family member with debilitating chronic pain.

This journey on the Hill was not an easy one for myself or any of the patient advocates. Due to my chronic illness, Ehlers Danlos Syndrome (EDS), co-occurring conditions, and chronic pain,
I was very grateful to U.S. Pain Foundation, they made every effort in planning to help each of us have a successful outcome despite pain and physical limits. One such offering were mobility aids, due to the substantial amount of walking. I accepted a mobility aid, as did others. This was a personal learning experience for me, about unapologetically accepting assistance when needed. Asking for help, discussing limits is something I still struggle with. What I realized is by accepting help I got farther than I could get on my own.

Regardless of the amazing support, my pain flared and several migraine attacks were triggered. I was not alone in this. However, it was worth it, we are fighters; we are used to getting knocked down and getting back up. We are used to fighting and advocating for ourselves. What was beautiful to see was 150 advocates united in the fight, helping and supporting one another on this journey.

It’s too early to claim victory. Much work—staying in touch with legislators, creating other advocacy opportunities—needs to be done.

But if we as pain patients are going to have our point heard by elected leaders—it starts with this type of advocacy.

Editor’s Note: If you are advocating with a Congressional or state representative, please share your experience in our comments section, tell our audience how it’s going and what you plan to do next!

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Authored by: Jeannette Rotondi

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Jim Moulton

I have been active in my neighborhood recently with local congressmen and women in dealing with the war on opioids. All they talk about is getting rid of your old pills and dealing with the addiction disease. I put in a question to ask about the other side of the war, the people who were losing their pain meds due to abusers, a lady asked a question about being in a lot of pain after having surgery, she was given a prescription for pain medicine which she was given to take 1 pill every 4 hours, but she was only given 60 pills a month, so she could only take 2 pills a day, the lady said, I am in a lot of pain , what can I do? There was a doctor on the phone on the phone who said you just have to do what you are told til you get better, which might never happen. I got sick and hung up.

Beckys

Opioid “addiction” again the term is lumping all those that need these meds into a bucket as if they were a criminal. Pain management for those in pain requires opioids. No use to try this bill because already people in chronic pain have had their meds reduced and some taken away for people who legitimately need them. No use in trying to give cannabis or marijuana edibles or oil to those in pain, because even in legal states, companies have already said their employees cannot use those.
When talking ‘addiction” in this country, first take away alcohol and cigarettes completely. As we all know alcohol is encouraged as a social norm and feeds into the personality and genetic traits of those who have inherited addiction traits. Eliminate the sugar. Do we not have a huge issue with diabetes, and obesity in this country? What is that dollar amount? Allow NIH to provide their established research on pain caused by Lyme. Lyme eats collagenous tissue (holds joints together, bones), will infect bones, will eat the sheath off nerves, and cause tremendous pain, disablement. CIDP, Lyme arthritis, MS, Lou Gehrig’s, Parkinson’s, fibro, are just a small number of outcomes from Lyme. Count and categorize the pain cases by what the issue is causing the need for meds and help. Was that ever done? Or is it the heroin deaths causing this push? Would this bill require Medicare to pay for ongoing physical therapy for those that will not get better but may live without as much pain meds if they are able to have physical therapy as a maintenance mode. Currently if one needs physical therapy, as many EDS patients do, unless they get better, more visits are not approved. EDS patients need ongoing help to stay strong, and help to get dislocated joints and bones back in place with help of a therapist. If they do get some better, again, the visits are then not approved. For the growing number of EDS folks and Lyme folks this would help to be changed.
I am not sure where or who are all the people who are getting so much pain meds, what category they are in. If my adult lime zebra daughter could get proper help maybe she wouldn’t cry moan suffer every day. Who are these people getting all this opioids? Best wishes for much success, may you all be blessed with good health and good genes.

Kelley

Thank you for being an advocate, but I one worry when I read the actual bill, why is it focused on still stating that chronic pain basically means opiades abuse? I didn’t see anything in the bill about CPP having the rights to current medications, only that the bill wishes to study pain, non addictive treatements, and opiode abuse . Am I reading it wrong? What i got from the bill is nothing to help support the millions suffering NOW, I agree with future testing and research but right NOW it’s opiades that WORK, ? And why does it automatically state that opiode abuse and chronic pain ate in the same category? Isn’t opiod addiction a different subject? If we are trying to prove to the government we ARE NOT addicts, then why does this bill put us in the category of being opiod abusers? Just once I would like to see somone fight I g for us, without putting pain and opiode abuse in the same sentence or bill. THEY ARE 2 different medical conditions.

Mist

“while opioid addiction costs $504 billion.” I am sure that left out of the treatment figures the burden of law enforcemnet court costs,prison .loss of property in thiefts ,children left to foster the system , and on and on those costs are left out of the Addiction figures .Narcon.free syringes .water given to addicts are left out off the addicts costs also. Burden on tax payers by extra work for Human services’. Extra hours the DEA and CDC have put into figuring out how to stop addiction. Furneral costs of Addicts who have successfully OD’d Addicts ER visits .

Thank you for representing the millions in pain and for writing such a wonderful review of your experience at Headache on the Hill. It’s empowering to watch this lobbying organization grow annually. Although I missed meeting you in DC, I found supporting the Opioids and Stop Pain Act incredibly easy this year. The AHDA created a prepared email detailing why the ‘Ask” is so important to so many using advocacy specific software. I was able to quickly type in my info, including my 9 digit zip code and send off a well-written prepared email addressed to Oregon’s representatives. I found the link on the AHDA website and Facebook page. Again, sincerest thanks goes out to you and all of the 2018 HOH advocates!

Alice

There was 64k drug overdose deaths. But there were 88k alcohol related deaths. Why don’t we hear anything about limiting the amount of alcohol ppl can buy??? I’ll tell you why. Because politicians don’t want nobody messing with their booze. Alcohol destroys so many lives. Kills many innocent ppl too. I want to have a panel of these politicians who are playing doctor assembled so that chronic pain sufferers can ask them questions like this.

Maureen M.

Dear Jeannette and Advocacy Team,
BRAVO!!! You represent the true meaning of what a CP WARRIOR is! You are going many extra miles to STAND UP AND SHOUT for your/our rights and to bring light to our ‘painful’ plight in this very tough battle. I support you and am forever proud of you all!
I am a born/raised Jersey girl! 🙂 Keep STRONG!!

Bravo for all for your bravery. I to suffer with chronic pain from migraines and severe IC and Fibro times 20 years. Reading this article gives me hope. Thank you. Peggy ❤

Kim

Thank u for advocating 4 all of us😁Someday I hope I will get well & b there with u & others. Until then , how can we help from home? I wrote to the president & local government, with no response. How can we help u , help us? Unable to get out much & not feeling well to to go on Facebook or other sites, what esle can myself & others do 2 help u? Thanks again.

HAZZY

WELL, HERE WE GO !!!! FOUND OUT THIS MORNING THAT MY PAIN MANAGEMENT DOCTOR IS LEAVING HIS PRACTICE, THE COMPANY TAKING OVER SUCK………..HE CAN’T DEAL WITH THE GOVERNMENT ANY LONGER TELLING HIM WHAT HE CAN PRESCRIBE AND WHAT HE CAN’T………THIS IS B.S.

Sher

As an adult with chronic pain, the medication that my doctor & I agree upon to best address my pain, is a decision that I take very seriously. It seems we are forgetting that opioid medication is used by healthcare providers to relieve pain that cannot be treated with less powerful drugs. They are prescribed because they are so effective. Many studies show they are safe & rarely cause clinical addiction or compulsive usage if taken as directed. Opioids are only safe to use with other drugs under a physicians supervision. I worry about the push to concoct alternative pain medicine that in my opinion will never be as effective as opioids. As an adult, I should have the right to choose what medication works best for me.

Danny

First of all, a very heart-felt “Thank you!” to you, Jeanette Rotondi, and every other individual who were a part of this important event. I’m sure that all of you are aware that you speak for so many people, most of whom cannot make such a trip, for various reasons. All Chronic Pain Patients (CPPs) owe you all a great deal of gratitude!

Secondly, it’s great to hear the specific, positive feedback you received at some of the meetings that were held. Many of us who are isolated from such events are bombarded with negative information, such as the comments we hear from state and federal leaders concerning our pain medications and the lack of a priority placed researching the causes of our pain and researching any alternative treatments that may actually work on our pain. I can only speak for myself, but I doubt I’m alone in saying that it is gratifying and cause for optimism when reading about the positive responses you reported from the staff members of several members of Congress.

Finally, I want to thank US Pain Foundation for the support it provided to individuals during the event and for supporting pain sufferers, as a whole, 24/7/365. It’s people like Paul Gileno (hope I’m not wrong about the name & its spelling) and others like him that are the faces of pain sufferers. The effort involved, and their pain which goes unmentioned, is very much appreciated! And I do believe that progress is being made, regardless of whether it’s happening as fast as we all want it to happen.

Thanks for sharing something positive. I think all CPPs need to hear some good, positive news right about now.

Hayden

I commend the pain management advocates who can meet eye to eye with our representatives. Addiction to drugs starts with a variety of issues, the least of which is prescribed medication. The knee jerk reaction by the CDC must be reviewed and amended. Our elect and appointed must be educated and stop the ignorance spewing from this issue.