AXSChat Podcast

#AXSChat Podcast with Kate Nicholson, from the U.S. National Pain Advocacy Center

April 09, 2021 Antonio Santos, Debra Ruh, Neil Milliken talk with Kate Nicholson
AXSChat Podcast
#AXSChat Podcast with Kate Nicholson, from the U.S. National Pain Advocacy Center
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Show Notes Transcript

Kate Nicholson, JD, is a health policy and civil rights attorney and a nationally-recognized expert on the Americans with Disabilities Act . 

She served in the U.S. Department of Justice’s civil rights division for 18 years, where she litigated and managed cases, coordinated federal disability policy, and drafted the current ADA regulations. 

Kate developed intractable pain after a surgical mishap left her unable to sit or stand and severely limited in walking for many years. During those years, she used opioid pain medication integrated with adjunctive therapies in order to continue to work and function. 

She gave the TEDx talk, What We Lose When We Undertreat Pain, and speaks widely at universities and conferences and to physicians groups. 

Kate has published pieces on this topic in The Washington Post, the LA Times, The Chicago Tribune, the Miami Herald, the Hill, and STATnews, among others, and is writing a book. She has appeared on public radio, Stand Up with Pete Dominick, and The Roy Green Show, and has given interviews to Fox News, Vice, BBC, and others. 

She is Co-Chair of the Chronic Pain/Opioid Task Force for the National Council on Independent Living and was recently appointed to the Opioid Workgroup of the Centers for Disease Control and Prevention. She regularly collaborates with drug policy, civil rights, disability rights and pain awareness organizations. She is also a 2019-20 Mayday Pain & Society Fellow. 

Kate was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School. 

 

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Neil Milliken: hello, and welcome to AXSChat.

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Neil Milliken: glad to welcome Kate Nicholson back to access chat Kate is a returning guest we're delighted to have K because Kate has now.

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Neil Milliken: Founded something called the national pain Advocacy Center so we featured you before Kate and and you've been in the field of Ada law and expertise for for a long time, but your particular.

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Neil Milliken: field of knowledge and passionate has been around pain and it's great to see that you're bringing this topic to a higher level, and then bring some organization around it so yeah welcome back great to have you here again and and also please tell us about NPAC.

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Kate Nicholson: Thank you well let's as you explained it my whole career has been a disability rights traditionally I was a civil rights attorney for the US Department of Justice.

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Kate Nicholson: But during I would say the last three or four years I have focused much more specifically on the issue of pain and pain, treatment and access to appropriate medication.

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Kate Nicholson: So NPAC National Pain Advocacy Center is really an alliance of scientists and clinicians.

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Kate Nicholson: People with human and civil rights and disability rights backgrounds, as well as health policy and drug policy backgrounds.

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Kate Nicholson: And then, a rich group of people with lived experience of pain, but also some people in recovery from addiction, because these issues have sort of intersected in, particularly in the US and Canada, but also in the UK and other countries.

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Kate Nicholson: With what's been called an opioid crisis, so we.

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Kate Nicholson: came together, because we were concerned about people losing access to necessary medication, there have been a lot of sort of corrections in liberal prescribing that are.

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Kate Nicholson: ending up effecting overreaching and affecting people who rely on pain medication for serious conditions cancer sickle cell mass who.

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Kate Nicholson: are no longer will no longer able to fill their prescriptions of the pharmacy, who are often now we see not even able to find doctors willing to treat them at all.

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Kate Nicholson: And who are being subjected to to a dangerous practice of course during voluntary API cessation or tapering, and so we came together to work on addressing those issues, but our focus is actually much broader.

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Kate Nicholson: We really believe that pain is misunderstood by the larger culture that people need to have a deeper understanding of its consequences.

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Kate Nicholson: That there are important health equity considerations when it comes to pain, where people of color often have their pain rated lower by clinicians rated as less to beer because of.

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Kate Nicholson: implicit and explicit bias and there are lots of studies that show that and also because of the way that we've sort of wage the drug war.

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Kate Nicholson: disproportionately against communities of color they're more likely to be perceived as drug seeking and not get out of pain medication, even after surgery or in the emergency room for acute pain.

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Kate Nicholson: Women disproportionately are affected by pain some studies show that up to 70% of people with chronic pain or women women's pain is commonly dismissed or disbelieved.

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Kate Nicholson: And they're sort of interesting new research, you know, it was only in.

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Kate Nicholson: 2016 that NIH in this country started requiring that some testing be done, not just in male lab rats and animals, but also in female.

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Kate Nicholson: And what we've learned is that at least an animal's entirely different cells are involved in pain processing or what makes pink become chronic in males and females, so there are some interesting.

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Kate Nicholson: Issues related even to believe it or not, discrimination and sort of how we conduct our research on a gender basis.

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Kate Nicholson: pain is the chief cause of disability globally and in the US poorly managed pain is.

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Kate Nicholson: People with Disabilities debra and I were just talking about this people with intellectual disabilities have disabilities often have their pain does Mr disbelieved or communication barriers, people who are trans may experience more severe pain and greater barriers to care i'm so sorry.

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Kate Nicholson: Allergies I can't believe I didn't turn that off um anyway, so our focus is broader a lot of.

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Kate Nicholson: there's a big misunderstanding about pain and we want to sort of shift the conversation but i'm sort of rambling on so.

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Neil Milliken: that's a whole lot of issues two.

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Neil Milliken: guys in that intro you know so so obviously much needed to have an organization that sort of advocating on these issues and we've covered these before and we you know you're not the only person who has come on amongst our guests that have.

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Neil Milliken: express their concerns about the way that and the prejudices people have towards pain medication, you know from from from and and all of the stuff about the sort of the innate biases is you know rings really true, and it also rings true to other forms of medication to as well, so.

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Neil Milliken: That that but I but i've watched the culture of fear, particularly in the States that's happened where now doctors are really afraid to prescribe pain medication, which seems to me, really, really unhelpful and and the the.

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Neil Milliken: And then say optics around pain and opiates have really had an adverse effect, you know disproportionately adverse effect on people's lives and people's abilities to live a good life, and so you know fully behind what you're doing so.

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Neil Milliken: Just one question why just national.

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Neil Milliken: Or the stock familiar right.

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Kate Nicholson: Actually, our focus isn't just national that's just the name, we came up with we actually have several people.

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Kate Nicholson: Both in our Community Council on our side Policy Council or caveat and and people for other countries yeah.

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Neil Milliken: No i'm fine i'm just i'm just teasing a little bit.

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Neil Milliken: But actually it's an issue that crosses borders that.

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Neil Milliken: So yeah absolutely.

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Neil Milliken: yeah we we need you.

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Neil Milliken: Know outside of the US as well, so.

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Kate Nicholson: We we work outside the US as well, yes.

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Kate Nicholson: But I think the folks that originally was nationalist because there were a lot of stupid things happening in different states and our our policy focus is really more more federal broader but it's certainly not just limited to the United States.

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Debra Ruh: Kate I know we were talking off air, you know about my daughter Sarah who will be 34 years old and a couple of days, she continues to remind me like i'm going to forget but.

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Debra Ruh: I didn't realize that you know she was living with chronic pain, I mean you know when we had you on the first time and it's.

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Debra Ruh: Now that we understand which she's dealing with and dealing with the pain medication in the management it's it is just, it is very interesting and complicated and.

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Debra Ruh: I know that she just had she just had her toenail removed and that didn't sound like a big deal, but it actually wound up being a big deal just because the chronic illness of it and blah blah blah.

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Debra Ruh: And they didn't even give her they didn't give her any payments and she got home later and she was in extreme pain and so.

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Debra Ruh: Somebody you know, a staff member had taken her that with her supported living but.

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Debra Ruh: I I think you know, like a like you said, and like nope commented on there so many really, really complex issues here and my question is did you see any of the complexity shift and change during coven.

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Debra Ruh: For example, I know that there were certainly a lot of health concerns during coping with people.

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Debra Ruh: with disabilities, including intellectual disabilities, whether or not, for example, Sarah would be eligible to get a incubator if she got in trouble, you know, during this crisis, so I was just wondering if you know.

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Debra Ruh: How, because things must have shifted but How have they shifted during during this covert experience.

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Kate Nicholson: yeah well, I think you know that's a that's a big topic as well, I mean certainly a lot of people with.

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Kate Nicholson: Chronic pain or pain generating conditions were more vulnerable to getting covered 19 were at higher risk either because of their underlying conditions, whether they be.

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Kate Nicholson: intellectual disabilities actually one underlying condition that put people at greater risk but.

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Kate Nicholson: with chronic pain people with autoimmune disorders, people with cancer or people taking steroids or chemotherapy for certain chronic conditions also put people at higher risk, so there was less that layer I know early on, there were a lot of problems with.

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Kate Nicholson: essential services being shut down what was considered essential, and there are a lot of services that people with chronic pains use to keep their pain at an equilibrium.

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Kate Nicholson: And those were unavailable for a period of time for people on the prescribing issue, there were some positive developments, the drug enforcement agency and the United States actually allowed expansion to bring expansion of telemedicine prescribing which generally is not.

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Kate Nicholson: deal done, and so there were some attempts to accommodate I think the needs of people with pain in the context of covered 19.

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Kate Nicholson: I would say that also in long covert support groups pain is a chief complaint of people who have uncovered, so there are lots and lots of layers to the to the coven aspects and, of course, when you're talking about.

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Kate Nicholson: People who need your sort of home Community based services or that was a big issue people didn't have sufficient PP ease and so they weren't showing up.

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Kate Nicholson: putting people at greater risk of being put into institutions and, of course, anyone in an institution we've seen you know, was it substantially higher risk and more isolated and.

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Kate Nicholson: You know, there are psychological factors for my solution, you know a lot of people with chronic pain also have.

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Kate Nicholson: anxiety depression and I think the the further existential state of being in pain is one of isolation, so be eight more isolated I think has been challenging problematic for many people there.

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Kate Nicholson: Is what happens with these that you know other health crises is that those who are already underserved and more vulnerable.

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Kate Nicholson: end up suffering disproportionately.

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Neil Milliken: Well, said and Tony of question right.

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Antonio Santos: So yes, I do there was recently a study that was looking at the side effects of covert after six months and.

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Antonio Santos: And according to do it, independently of the of the situation could we just someone who dealt with no symptoms but who has been infected.

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Antonio Santos: or someone who had see the symptoms, they were both the fact that, in the same way and and those symptoms.

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Antonio Santos: are still there, started to be investigated and research button, they are not yet clear.

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Antonio Santos: And in English and to the topic of the conversation today, do you know if anyone is doing any type of research in terms of Kobe and pain and and then long long term effects because I feel that that is.

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Antonio Santos: Sometimes people people feel oh I didn't have any symptoms, everything is fine it's fine it's fine with me, but there are long term consequences that can have a huge social social impact in society.

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Kate Nicholson: yeah that's a good question, I think I think there are a number of researchers looking into long cove ID or post acute.

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Kate Nicholson: SEC, while I send her over they didn't they have different names for it, and I know that some of the big association dislike the US Association for the study of pain.

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Kate Nicholson: has also raised this issue the pain connection I interestingly myself developed mom coven i'm fine now but I got a coven of.

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Kate Nicholson: You over a year ago in April last year very early when it first came to to Colorado where I live.

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Kate Nicholson: and developed long term encephalitis submitted I decide to be on steroids, for a very long time, this because my brain was very swollen.

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Kate Nicholson: And whether that was connected to other pre existing conditions or just nobody really knows right, as you say, and it is true that some people have long covered symptoms.

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Kate Nicholson: Without having been a systematically infected, to begin with there's a lot we're still.

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Kate Nicholson: You know, in some ways it's been remarkable to see how much we've learned about this virus that's really not been around for very long.

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Kate Nicholson: In some ways the scientific up tick on it has been astonishingly fast compared to other viruses, if you think about HIV or other viruses and how long it, it took us to really understand them.

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Kate Nicholson: But in other ways, because it's such a mess, you know affects so many different body systems and affects people so differently, it remains you know industry.

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Antonio Santos: there's a new administration United States have you.

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Antonio Santos: observed any shifts in the in in in healthcare that that can somehow be more more friendly in terms of the approach to patients and to the engagements with doctors.

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Kate Nicholson: I haven't really I mean I think there's a more compassionate administration for sure, and I think there's been a real focus rightly.

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Kate Nicholson: on getting people vaccinated and you know the immediate emergencies or that i've seen a real shift in I mean I haven't seen a real shift in concerns about access to medication or any of those kinds of issues.

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Kate Nicholson: But I do think that there has been a focus on health care and and access and at least you know it's really been an emergency focus, though, mostly on on stemming.

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Kate Nicholson: The crisis and depend on my Although there have been some some good expansions for people with opioid use disorder and addiction, whether.

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Kate Nicholson: steps to address that continued drug overdoses in the US, I mean they recently just shifted a policy.

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Kate Nicholson: In which federal money could be paid for testing the streets apply, for example, which didn't use to to happen and that's really what's killing so many people today is there's an increasingly potent street supply that's tainted with.

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Kate Nicholson: Car fentanyl and fentanyl and these very, very pumped up to us, please professional to tranquilize elephants, I mean very potent substances, so there have been some shifts not necessarily in the area in which I am advocating in terms of the administration.

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Kate Nicholson: But we recently had a good policy victory in in the Congress.

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Kate Nicholson: There was an attempt.

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Kate Nicholson: To impose a strict federal limit for all additional opioid prescriptions of two days, regardless of someone's.

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Kate Nicholson: health condition, and that was going to be introduced, it was introduced to the bill that was introduced in the last Congress, and we were able to get that removed from its reintroduction in in this conference, and that was really important because.

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Kate Nicholson: there's a very you know there's course or big range of conditions if someone's had a major surgery or a double hip replacement then probably they will need more than a three day supply.

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Kate Nicholson: Having to return to the doctor every three days if you're in a rural area and have to travel to an urban area if you don't have good transportation access, if you are burdened by additional co pays all of those problems exist, but what we've also seen.

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Kate Nicholson: Is that in the States, some of these kinds of laws have been enacted and what's happened is that, even though chronic pain is supposed to be exempted.

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Kate Nicholson: It in fact is not people with chronic pain people with cancer people with sickle cell who require who may have episodes or episodic pain.

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Kate Nicholson: end up falling through the cracks and so that was that was a good recent victory.

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Neil Milliken: yeah it astounds me that.

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Neil Milliken: They could put such a short limit upper limit on prescription length because.

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Neil Milliken: For all of the reasons that you just stated, even in the UK where i'm in a privileged position where we have a National Health Service and you pay very little for prescriptions.

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Neil Milliken: The the time lag to get a you know, a repeat prescription to get to see a doctor to then get to the the pharmacy and get that prescription.

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Neil Milliken: I would say that five times out of 10 it would be impossible to get that done.

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Neil Milliken: In time to have continuous continuity of medication so so you're pretty much saying you've got a one into chance of of of putting someone back into unnecessary pain.

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Neil Milliken: right through through that legislation, maybe higher even even in a country where it's really well organized and publicly funded.

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Kate Nicholson: yeah yeah now it's problematic and again there, people say you know barry's the pharmacy anyway so having to have to go every every three days would have been you know challenging and and you know it's important for people to heal at, for example, surgically.

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Neil Milliken: Good I know.

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Kate Nicholson: We all know that pain is a normal body function, when you know it it's adaptive it teaches us that we need to go rest or seek care, but when it's very severe, even when it's a cute.

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Kate Nicholson: We don't heal well unless it's treated and that's why we treat pain.

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Kate Nicholson: After surgery, but the other side of the coin is that what a lot of people don't understand is that when pain becomes chronic.

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Kate Nicholson: It doesn't serve that adaptive function anymore it actually behaves more like a disease, because it damages everybody system, and so it becomes especially important to treat.

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Kate Nicholson: In a chronic pain situation so when you have people sort of across the spectrum of serious acute pain into chronic pain palliative care cancer pain and potentially being denied access to medication that has some very serious consequences.

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and

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Neil Milliken: And all of these bits of legislation, I mean they weren't.

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Neil Milliken: I understand they weren't started out with the intent of of harming people, but the consequences of.

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Neil Milliken: These policies is clearly to my mind, harmful, and I think it's great that you.

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Neil Milliken: The work that you're doing at the Center is bringing science into there and bring these different groups together, because often the voices of the patients aren't listening to so the hence why you need the scientists as well.

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Neil Milliken: I am really curious about attitudes to drugs right because we have a really weird relationship as humanity with with medicines and intoxicants.

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Neil Milliken: And, and some of this is cultural.

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Neil Milliken: And so.

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Neil Milliken: We know that, like you said before that the different ethnic groups, get treated differently and different ethnic groups have had traditions of using different substances to treat pain and also for pleasure and recreation religious observance and all sorts of it.

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Neil Milliken: Do we really do think that we need to change our entire attitude to how we view and sort of evaluate these substances as a whole, not just opiates but but, but our attitude to.

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Neil Milliken: To what we put in our bodies and how we, and how we regulate some of this stuff because it seems tremendously disjointed.

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Kate Nicholson: But I think it is disjointed I think you know there's pretty good research that the history, at least in the United States and drug policy really is.

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Kate Nicholson: has a lot to do is even phobia racism in terms of which substances are banned in which substances are permitted and.

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Kate Nicholson: I do think that you know prohibitionist drug policies.

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Kate Nicholson: can be very destructive.

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Kate Nicholson: Certainly, what seems to have happened in terms of the escalating over the stance, where you've got that increasingly potent and dangerous supply when.

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Kate Nicholson: The legal or prescribed opioids were were limited.

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Kate Nicholson: So I mean, I do think you know, there is a broader question about the drug policy, and I think that almost invariably supply side efforts efforts to have had failed and had failed people of color, in particular, or certain communities more than others.

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Neil Milliken: Because.

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Neil Milliken: It is a problem that I.

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Neil Milliken: don't have the answer to but i'm but I mean I.

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Neil Milliken: i'm all caught conscious of you know, because.

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Neil Milliken: I I actually am prescribed a controlled substance.

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Neil Milliken: So for my condition and it helps me.

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Neil Milliken: But, but you know if I didn't have a prescription, it would be illegal and and so.

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Neil Milliken: But it, but it, you know, but it has positive effects on me, so I think that you know that.

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Neil Milliken: There is a false dichotomy that we see with these things where we go Oh well, you know that's a stimulant, it must be bad coffee mulan.

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Neil Milliken: khurana is a stimulant.

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Right.

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Neil Milliken: We have these nostrums you know these ideas as a society that are based upon our our prejudices and biases, so I think that that's.

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Neil Milliken: Really, you know.

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Neil Milliken: We need, we need to look at this from a multicultural point of view, bring in these people, so I mean I look at your extended board and you've got a wide plethora within impact.

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Neil Milliken: So I mean tell us a little bit more about the people within unpack that you brought together, because I think that looks like a really amazing community of people and contributors.

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Kate Nicholson: yeah so the people on our board is everybody's a fairly small board myself.

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Kate Nicholson: Laura mills who works for Human Rights Watch and wrote a really important report December of 2018 about what was happening to people with pain.

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Kate Nicholson: being denied medication or health care is on our board the Julie raskin who runs the Colorado cross disability coalition she's their executive director it's really a rock star disability rights advocate ad libs with Ms and requires some prescribed medication to manage that.

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Kate Nicholson: don gibson who is has established many years ago, a Twitter chat called spoony chat, which is a chronic pain.

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Twitter job.

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Kate Nicholson: Is is on our board and also Jonathan mayor who's recently emeritus professor of epidemiology at the University of Washington, who was written.

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Kate Nicholson: about his own experience with undertreated team and the drive that propels him to to work on pain research and also to teach about paying he teaches one of the few undergraduate courses about pain.

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Kate Nicholson: In the country, we have a science and policy Council with experts in a variety of different areas related to pain semi doctors to be now Lee who is Canadian we're not just based in the US.

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Kate Nicholson: spider name is an expert in children's pain and how we how we treat.

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Kate Nicholson: Children and pain affects their development and their lifelong relationship with health care so that's a really important issue we have Dr Tamara baker who's an expert, not only in sort of.

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Kate Nicholson: gerontology and how we treat older people in pain, where where pain is a chief complaint of older Americans and older person's but also an expert in racial disparities in pain tear.

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Kate Nicholson: And just a number of Dr john mackey who's the head of pain management at Stanford and spend very involved in pain policy quite a number of pain folks.

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Kate Nicholson: Then quite a number of disability rights and human rights folks in our Lindsey Baron runs policy for nickel, the national centers on independent living.

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Kate Nicholson: She and I, together for many years have have co chaired a task force of chronic pain and opens task force there.

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Kate Nicholson: And we have a number of people with expert other people with expertise in pain policy, we also have a number of people with doctors with expertise and scientists.

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Kate Nicholson: In addiction and drug policy experts professors who have looked at these things that we're talking about like sort of prohibition and drug policy and.

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Kate Nicholson: How they affect people and and how they can generate stigma and lead to barriers to care, and then we also have an extensive Community Council of people with lived experience a lot of a lot of people, we talked about to buy him Paul who's.

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Kate Nicholson: sort of rockstar chronic illness and disability rights advocate series hill Hello Jimmy cerebral holbeck lots of folks who many people in the disability rights community will recognize and know.

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Kate Nicholson: And we also have people in our group, and our Community Council with lived experience of addiction and recovery as well.

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Kate Nicholson: Because because of the way these these issues have intersected in our culture, we feel like it's very important to bring everyone to the table in this conversation we don't think we're you know going to solve this problem by just looking at it from a single a single angle.

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Neil Milliken: Now.

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Neil Milliken: I was impressed by the breadth of the group, and I think it's really, really useful to have that that breadth and you've obviously got a lot of thought into bringing this this collection and people together, so I think it's it's really exciting to see you.

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Neil Milliken: bring this together to start hopefully moving the Needle, on this because.

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Neil Milliken: If anything, since we first started having conversations things have got worse, not better.

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Neil Milliken: Despite our communities understanding of this increasing because I mean even amongst the disability Community quite often painters been dismissed because it's hidden and everything else so so.

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Neil Milliken: Thank you very much for the work that you're doing Thank you again for joining us telling us about it, hope that.

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Neil Milliken: Come back you know, in a in a short while, and tell us about impact now being in pack or something being a global movement on this stuff because it's super needed.

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Neil Milliken: And yeah if you've got research to share and stuff like that i'm really very interested in will have kosher and, of course, I also need to thank Barclays access my clear text and Michael in for keeping us on air keeping us captioned keeping us.

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Neil Milliken: Here and helping us the Community, so thank you very much.