Next Foundation Webinar - Opioid Advocacy

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Mon Apr 16, 2018 9:12 pm

badnights wrote:
THIS ^ alone is good reason that we all should be Foundation members at whatever level we can support. $5? Send it! $50? Yup. $500? All is appreciated and used wisely.
I shudder to think how little doctors and the general public would know if the Foundation wasn't doing its thing. What they do is absolutely essential for us patients.



Same here!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Tue May 22, 2018 9:04 pm

I signed up to participate in the Foundation's RLS Advocacy program. The folks at HMCW (Health and Medicine Counsel of Washington) in DC provided me with instructions about how to contact my various Congressional representatives's local offices to set up a meeting as well as documents that I could use during the meeting.

So far, I have met with the local health staff members for one of my senators and my representative. Both meetings went very well and were easy to do after reading HMCW guidance document. Each meeting went for about an hour and both staffers were very interested in learning about RLS. Both of them also seemed to be very knowledgeable about opioids in general, but were also understanding about how current regulations are making it increasingly difficult. During the discussions, I haven't been holding anything back when I explain that if things get worse and I lose access to methadone, then my options are very limited and very bad. They seem surprised when I said that one option is heroin, but once they think about it they understood the point. I also pointed out that suicide also becomes a very real option, which appears to underscore our dire situation. Both asked if suicides occur within the RLS community, which they do. Both said that they were going to immediately pass the info that I gave them to their legislative contacts in DC.

So, if you haven't signed up to participate in this program, please do ASAP. You do not need to be a member of the Foundation to do this. To find out how, go to https://www.rls.org/get-involved/advocacy
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Wed May 23, 2018 11:39 pm

I got a followup email from the district director for my congressman this afternoon as a followup to our meeting on Monday. He had forwarded the Foundation information as well as his comments to their staff in DC. His email said that the DC staff had reached out to multiple Congressional committees working on opioid issues and they were all clueless about RLS and the issues that we face. Hopefully we can start shining a light on our problem and get some recognition in future legislation.

Therefore, if you haven't already signed up, please do so and then use the info they provide to start talking with the staff for your Congressional representative and both senators. It is easy and they are listening, but you have to speak out.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Sat May 26, 2018 4:53 am

Will so as soon as I get back home.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EdSoFlo
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Re: Next Foundation Webinar - Opioid Advocacy

Postby EdSoFlo » Sun Jun 24, 2018 1:21 am

I wrote and submitted my letter to my Congressman, and in the course of that interacted a bit with Peter Herzog via email and he is a great and very talented man, we’re fortunate to have him and his lobbying firm on our team. I have a couple thoughts, one, I think it’s very important to expand these efforts to the state level as well. Much of this legislation will occur at the state level, and the state level is where some of the most reactionary, knee-jerk and frankly pandering legislation can occur. And secondly, which ties into this point, is I love how our stance can be made clear with the notion of a ‘carve out’ or ‘safe harbor’ for RLS patients element written into any new opioid restrictive legislation, and that that stance is very much backed up by the evidence. That it, opioids when utilized for RLS work on an entirely different basis than for chronic pain, are used in much lower doses, have a very low incidence of tolerance, abuse, etc. And for many of us it’s continuing availability for use with RLS is quite simply either being able to enjoy a decent, productive quality of life vs. quite the opposite. If anyone has any thought about expanding our outreach/lobbying efforts to the state level, I’m all ears, and will gladly participate and help in any way possible.

Rustsmith
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Sun Jun 24, 2018 2:39 am

In addition to writing the letter, Peter Herzog suggests that you make a appointment to visit the office of your three congressional representatives. He has a handout to use during the meeting as well as instructions on who to ask to see, what to ask for and how to follow up. I did this and found it to be extremely useful. The health staffer in all three offices showed a lot of interest (in fact it sounded like the daughter of one of them has RLS).

As for state level efforts, Peter suggested that a similar approach can be taken. However, there are so many variations between states that it would be impossible to get any sort of coordination. I know from talking with my doctor that the state level regulation where I live cause problems, but nothing like the problems caused by the FDA/DEA/CDC. If we can get fed level carve outs, that is also likely to flow downhill to the states as well. I personally don't see an uphill movement on opioids from the states to DC similar to the one that appears to have started on marijuana.

So, by all means visit with your state legislators on the issue of opioid regulations. I cannot hurt and might put a bug in the ear of a state legislator that opioid regulations impact people other than those with chronic pain and those who abuse opioids.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Next Foundation Webinar - Opioid Advocacy

Postby Rustsmith » Sun Jul 01, 2018 3:06 pm

The FDA will be holding a public hearing on "Patient Focused Drug Development on Chronic Pain". Although RLS is not technically a chronic pain condition, here is your chance to submit a comment to the FDA about how their opioid regulations are harming us.

This link takes you to the summary of the public hearing:
https://www.federalregister.gov/documents/2018/05/15/2018-10284/patient-focused-drug-development-on-chronic-pain-public-meeting-request-for-comments

And this link takes you to the page where you can send an electronic submission that will be included in the hearing notes. Just click on the button that says "Comment Now"
https://www.regulations.gov/searchResults?rpp=25&po=0&s=Patient-Focused%2BDrug%2BDevelopment%2Bon%2BChronic%2BPain&fp=true&ns=true
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Posts: 15345
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Next Foundation Webinar - Opioid Advocacy

Postby ViewsAskew » Sun Jul 01, 2018 7:41 pm

Thanks, Steve.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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