Busy Week Ahead for Chronic Pain and Rare Disease

Busy Week Ahead for Chronic Pain and Rare Disease

A lot of deserved attention will be focused on rare diseases this week in Washington.

800 rare disease advocates will descend on Washington, DC to bring awareness in the nation’s capital.

The Rare Disease Week on Capitol Hill Legislative Conference and Hill Day is an event established for patients and caregivers, patient advocates, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference, the Hill day is for patients and caregivers, patients advocates, and patient advocacy organizations only.

Among the events planned are:

On Monday the 24th: the FDA’s Rare Disease Day Public Meeting is being livestreamed here.

On Tuesday the 25th: the Rare Disease Congressional Caucus briefing will be able to be seen here.

On Wednesday the 26th: Watch the Rare Disease Week Legislative Conference here.

Kudos to the folks at rareadvocates.org for putting together such a potentially eventful week.

NAM Opioid Poll Closes This Week

The National Academy of Medicine’s Action Collaborative on Countering the U.S. Opioid Epidemic is hosting a listening session to better understand the experiences and perspectives of persons living with chronic, non-cancer pain, including their experiences interacting with and navigating the health system.

If you have any questions, please email us at opiidcollaborative@nas.ed

If you haven’t filled out the survey yet, you can here.

The content gathered from the listening session and the online survey will inform the creation of a “person-centered pain management journey map.” The journey map will outline approaches to effective communication that lead to strong clinical relationships and optimal quality of life for people with pain.

Are You Talking With Your Congressional Representative About Chronic Pain

As more chronic pain patients are concerned about shrinking access to medical providers and medication, a question we ask readers who express their concern is “Have you talked with Congressman or Congresswoman?”

The answer often is a negative.

Don’t underestimate the importance of personal contact.

If you know your Congressional representative, let him or her know by email or phone call that this is an issue they need to be addressing.

If you don’t know who he or she is, you can find out here by putting it in your zip code.

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Authored by: Ed Coghlan

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Paula

I sent a letter to my representative and within a half hour got a response with his phone number and encouragement to share any concerns. I will find out if it was just a form letter when I write again tomorrow. It is encouraging.

Dawn Witek

The pain community needs to reach out to purduemedinfo@pharma.com. Leave an email about your pain, how your suffering from being lowered on meds, what positive affects you had on opioid medications, and if you are or have contemplated suicide and if a loved you has commited suicide due to being lowered or cut off completely. I sent an email to let them know they shouldn’t settle this lawsuit blaming them for this opioid crisis. Because this crisis is really heroin and illicit fentanyl fault. Overdose deaths were and are still skyrocketing even though prescription opioids have reduced drastically. What this lawsuit is saying- if you can’t take your medications right that you can blame the person or company that made them. That is just stupid and makes NO sense. So pharmaceutical companies shouldn’t settle or pay for this crisis, it’s not their fault. When Purdue called me back I gave them info that they didn’t realize was happening. They need to know that there is only positive outcomes for taking opioid medications. I know when I had mine I could function and do daily activities, without them I haven’t been able to do anything. I’m in misery with the proper dose of opioid medications. Please share everyone in the pain community needs to respond to them and give them their stories. Make this go viral. Thank you.

It is so refreshing to see pain advocacy gaining strength & respect on the Hill. In the past we were often considered nothing more than troublemakers, drug seekers and a “complete waste of time” by lawmakers who said they had “more important topics” on their agendas than to listen to a bunch of people bitch and complain about how the medical industry was mistreating them. Heck, lawmakers would often say, “…but you look so good!… how can you be so sick?”… lol.

My hopes and best wishes to all those who made the trip here to Washington DC despite their painful infliction to stand up and speak on behalf of all those who could not or cannot any longer. THANK YOU GUYS FOR KEEPING THE TORCH BLAZING, GIVE’M HELL on our behalf… I sure wish I was attending to witness this historic change I sense in the air! Good luck! : )

Hi. As a UK person with chronic pain, I do read your daily reports/articles etc. Horrified, as a long-term UK campaigner, to read the endless self-treports of abusive ‘torture’ so many of you are subjected to whenever seeking humane and effective pain control/management from physicians and nurses. Shame on them… It is also shocking, to me, to read of you being subjected tô urine drug tests. They wouldn’t dare to ask chronic pain patients to be similarly tested, here. I can tell you. There would be a national outcry. It seems that your human rights are being trashed by these powerful government agencies and medical insurance companies. Long live our ‘frree at the point of use’ NHS. National Health Service….

I like to read reviews on pain management offices in all 50 states. It tells me how chronic pain people are being treated by pain management and its not good. Even Treatment for people that had mulitple spine surgies or spine stimulators that broke are mistreated. Google search just by asking for pain clinic in a state, dont need to know pain clinic name. Google will list them for you. Very interesting stories, all have same type theme. Blacklisted by doctors, innocent people that been long term chronic pain patient suddenly dropped for failed drug test or pill count, rude treatment from medical staff, force injections or pt threaten to be dismissed if not doing these,increase price on urine test. Long wait during office visit before seen. Is this pursuit of happiness? Chronic pain people will never again get to have pursuit of a resemblance of a happy life.

Denise Morris

What we need is a sea change that acknowledges, respects, and treats unseen illness and injury.

Martha

Eeeks, one more thing –
I went to the Survey & it asks for 1st and last name plus email address. If one responds, is that info made public? Can you think of any repercussions for providing that info, or any reason why any of “us” would or should be concerned?
Many thanks

Martha

Hi Ed! Thank you for posting all of that terrific info!
Please note: under the paragraph header NAM OPOID POLL….. there is an email address spelled: :opoiidcollaborative@NAS.ed
( with 2 ii’s in the opoid) yet if you click on that header, it asks you to send ???s to:
opoidcollaborative@ …. spelled with only one “i”
Which is correct? Thank you

Cindy R

Hey Ed, we probably don’t say it enough: Thank you for staying on top of this stuff and letting us know what’s going on at the government level.

Thank you for the reminder to contact our elected representatives, too. I’ve been writing an email in my head for weeks or months, but haven’t gotten it actually written and sent. Every time I leave my new pain doctor’s office, fuming and cursing under my breath (my previous one was shut down by the DEA last summer) I swear I’m contacting both State and Federal representatives, but by the time I get home, I’m so wiped out, all I’ve done is try to figure out what to say that they will actually read.

Ann Sable

Sorry, but I’m tired of listening to the never ending controversies that will never be straightened out (possibly) in my life time…maybe our children’s and theirs, as well. Good luck to you all and many well wishes 3 folds.

Dave

Hi,
To contact all of the representatives in your voting district Google My government representatives. A site will come up showing How to contact your government representatives. It lists federal, local and state representatives. It helps to have people like family and close friends who see how much chronic pain patients are suffering from the new government guidelines. Opioid Prescription rates are going down as the opioid overdose rate climbs from illegal heroin and fentanyl. And the drug cartels get increased revenue. Please write or visit your state representatives if you are able to. My state representative told me two years ago I was the first pain person that he’s heard from. We all worked to hard to be tossed aside like this. All because people used a medication not meant for them and they got addicted.
Thank You, Dave