New procedures and nonopioid pain management give patients cutting-edge treatment options. But they’re frequently out of reach due to a lack of insurance coverage. Hosts Terry and Bob discuss how the bipartisan NOPAIN Act seeks to change that.
Plus, Dr. Stanley Golovac discusses nonopioid options for pain management, and how expanded access can improve patient outcomes in the long run.
And to get the patient perspective, Kate brings on Mugabi Byenkya, chronic pain advocate and author, to talk about accessing treatment options, and Tom Norris from California shares his chronic pain journey.
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Dr. Stanley Golovac, Co-founder of Florida Pain
Mugabi Byenkya, Advocate and Author of Dear Philomena
Tom Norris, Patient Correspondent
Buy "Dear Philomena," via paperback
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Reform Medicare’s Payment Policy to Expand Patient Access to Nonopioids
Listen: Terry’s Take Special Episode
August Recess Start Date in the Air as Senators Await Ruling
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For decades, American communities have been torn apart by prescription opioids.
It's really an awareness campaign to make patients, and physicians of all levels, understand and appreciate that there are alternatives to therapies that one should at least determine if a patient is a candidate or not.
Terry Wilcox (29s):
There are other options for chronic pain patients besides opioids, but insurance coverage, or lack thereof, can get in the way. Today, we look at solutions to broaden patient access to innovative treatments, procedures, and therapies. Welcome to the Patient's Rising Podcast, I'm Terry Wilcox, Executive Director of Patients Rising. We're an organization that provides education, resources, and tools for the 133-million Americans living with chronic illness. I'm here with my co-host, the guy who hurt himself twerking to a Cardi B workout video. In your black t-shirt Bob? Were you twerking in your black t-shirt?
Dr. Bob Goldberg (1m 9s):
Terry Wilcox (1m 9s):
He's Dr. Bob Goldberg. Here he is folks, Co-Founder for The Center for Medicine in the Public Interest.
Dr. Bob Goldberg (1m 15s):
Ah, God - Just one second. I don't know how people do that, Terry.
Terry Wilcox (1m 22s):
I don't either. I mean, the twerking thing is new. I'm so far removed from...
Dr. Bob Goldberg (1m 31s):
You're talking to a guy, the last dance I learned was the Hokey Pokey.
Terry Wilcox (1m 36s):
Look, I'm like the Macarena generation.
Dr. Bob Goldberg (1m 39s):
I can't even do the Macarena now, because my neck is so stiff. It's like, how do you move one part of the body to the other? I felt like a double helix. I still feel that way.
Terry Wilcox (1m 52s):
Yeah, I'm from Texas. I can do the Cotton-Eyed Joe, I can Two-Step. I can do the Macarena. I can do the Electric Slide.
Dr. Bob Goldberg (1m 58s):
Yeah. Not in my current condition.
Terry Wilcox (2m 0s):
Twerking is not in my repertoire. I have to say.
Dr. Bob Goldberg (2m 3s):
Yeah, it hurts in every part of the body.
Terry Wilcox (2m 6s):
It looks like it does when I watch people do it.
Dr. Bob Goldberg (2m 11s):
In the meantime, I'm here with Terry. We're going to talk about the healthcare policy news from Washington DC. and there is a lot, especially since Congress is trying to get out of town at the end of August so they can go campaign and go back to their home districts. There is a lot going on, Terry.
Terry Wilcox (2m 31s):
Well, that's right and we have a packed episode for listeners today, so that patients can get up-to-speed on all of these issues and how they impact them. The big focus today is on a proposed piece of legislation that could greatly expand coverage for non-opioid treatments. It's bipartisan, something rarely happening in Washington these days. It's a bipartisan effort to turn the tide against the opioid epidemic, and if it's fast, it would also give patients greater options to manage their healthcare.
Dr. Bob Goldberg (3m 3s):
Right, and by expanding patient's options, they can have more power and control over their healthcare journey. As we know, chronic pain comes in different forms. You don't have to be an idiot and twerk like I did. There is a lot of untreated, or improperly treated, lower back pain in the form of a lumbar spinal stenosis. Stan Golovac, has been a passionate advocate for greater awareness, and covers for non-invasive procedures that address the root cause of pain instead of using opioids. A lot of chronic patients benefit from opioids, but they could use other treatments to sort-of get them over the hump.
Terry Wilcox (3m 45s):
You're exactly right, Bob. For some patients, we obviously say, and we know a lot of them in our chronic disease space, opioids might be the best option, but if insurance plans are making it the only option available, it can really limit a patient's ability to manage their healthcare and explore other treatments. We're going to hear from Dr. Golovac in a few minutes, but first this week's healthcare news headlines.
Robert Johnson (4m 15s):
In your health news, the World Health Organization has declared the monkeypox outbreak a global public health emergency. Officials are now trying to calibrate messaging to those most at risk for contracting the virus. The CDC says there are almost 5,000 confirmed cases in the United States. Loss of smell, or the ability to taste, are symptoms of a COVID 19 infection, but a review of eighteen studies of people in North America, Europe and Asia, says 27-million people, with a confirmed case of the virus, still have not regained one, or both, of those senses. Most experienced the ability to smell or taste within 30-days, but it now appears some don't recover as quickly, if at all.
Robert Johnson (4m 59s):
A new study, in The New England Journal of Medicine, says daily Vitamin D supplements don't help prevent broken bones. The review included more than 25,000 people. It confirmed, that taking extra Vitamin D every day, did nothing to lower total bone fractures among those in the study group. Finally, today, vaccine needles could someday be replaced by nasal mist or skin patches. The predictions were presented this week at the White House. The hope is, that vaccines of the future, would not only reduce the seriousness of infections, but also prevent them in the first place. No timeline was given for any of the ideas, even though some are in development.
Robert Johnson (5m 41s):
That's your health news update for this week, I'm Robert Johnson.
Terry Wilcox (5m 47s):
Now, before we get into the news of the week, we should note that this past Tuesday, July 26th, was the 32nd anniversary of the Americans with Disabilities Act or ADA. Now, thirty-two-years later, it continues to be a truly monumental piece of legislation, for those with disabilities, from protections against discrimination, to equal access to healthcare and more. We're still seeing its impacts today, but we also see the work that still needs to be done for this community and it's something that we will be continuing to track, as always, at Patients Rising.
Dr. Bob Goldberg (6m 27s):
When George W. Bush signed the Bill in 1990, he wrote...
Terry Wilcox (6m 32s):
You mean George H.W. Bush.
Dr. Bob Goldberg (6m 37s):
See, that's what happens. Twerking affects your cognition too. I think it's worth reading. The Act is powerful in its simplicity. It will ensure that people with disabilities are given the basic guarantees, for which they have worked so long, and so hard. Independence, freedom of choice, control of their lives, and the opportunity to blend fully and equally into the rich mosaic of the American mainstream. As you pointed out, Terry, we have a long way to go. A lot of the things that we talk about on the show, violate the spirit, and perhaps the letter, of the American Disabilities Act.
Terry Wilcox (7m 12s):
I think we're both talking about the same thing there, which might be our friends at ICER, and the QALY, correct.
Dr. Bob Goldberg (7m 20s):
Well, that absolutely, but also what's happening with Medicare drug price negotiations.
Terry Wilcox (7m 25s):
Well, absolutely. There are all sorts of things we can dive into as to how there is discrimination in healthcare. Speaking of legislation, and speaking of negotiating with Medicare and everything else, Congress is in the final sprint before August recess, which means a lot for us to unpack, specifically with health policies. So, Bob, here's what I want to talk a little bit about from reconciliation. Earlier this week, I released a "Terry's Take", like a mini podcast, ranting about this particular Bill, because I've had these experiences, as you know.
Dr. Bob Goldberg (8m 5s):
Terry Wilcox (8m 5s):
Yesterday, I went to the pharmacy counter. My mother-in-law was just diagnosed with asthma, and they said your price is $101.57. As we all do now, because we can, we look up the price on GoodRx. Well, the GoodRx price was a $105.00, so I bought the medication, but then I looked at the pharmacist and said, "So what are they basing her price on? What's the price they're basing her price on?" She was like $300 and something, $370. It was some large price like that. Basically, they're having her pay the amount that they didn't get rebated for, because I know GoodRx is basically a PBM run shop.
Terry Wilcox (8m 52s):
Obviously, they're making a little money over there. They're probably actually charging her a little bit more. They're only making a little money off of her in the process. It really angers me, as we talk about this, because what's being touted right now is the $2,000 price cap in the Bill, which we highly support, because although most seniors never reach that threshold, the ones that do, reach it thousands and thousands and thousands of dollars above $2000. They really need that support. Then we have this ambiguous thing over here, called Price Negotiation with Medicare. The thing that's not in there is Rebate Pass Through, which they're using to pay for all of this.
Terry Wilcox (9m 34s):
I can't do a math problem, for any senior out there, that explains to them how they're going to save a dollar when somebody negotiates ten drugs in 2024, but I can actually do a math problem, for if they did Rebate Pass Through at the pharmacy counter starting tomorrow.
Dr. Bob Goldberg (9m 50s):
I think we should do that. Trying to let people know just how idiotic this legislation is. Compare the price of the drug, for example, with what's happening with GoodRx, with what the rebate spread is, what they should be paying and what the net price is. That is possible but is not available.
Terry Wilcox (10m 8s):
In the case of my mother-in-law, let's just round it up to say the price, the net price of whatever this medication was, was a hundred dollars, because it's easy math. If she had to pay 20% of that, that's 20 bucks. For a year, paying 20 bucks gets her to $240 and not over a thousand dollars. Being over a thousand dollars, she never reaches the $2,000 cap, so that piece doesn't help her. An inhaler is not going to be one of the negotiated specialty medicines. So, groups like AARP, who are out there running these crazy ads about saving their seniors money at the pharmacy counter, when you and I both know, they're just trying to save UnitedHealthcare. They're not going to save seniors money at the pharmacy counter.
Terry Wilcox (10m 50s):
They're going to save a few. There will be a few that will get the effects of this, right? They're selling it to the American people, that 87% of voters say they want to tackle this problem and think it should be allowed. Once they realize that it's not really going to affect their bottom line, that they're not really going to see any savings, how are they going to answer them then? What are they going to say to their voters and their seniors? What are they going to say then, because this isn't going to help them?
Dr. Bob Goldberg (11m 24s):
Terry Wilcox (11m 24s):
Another healthcare topic, that is still looming over Washington, is the opioid epidemic. There's a bipartisan bill, which we sort of touched on, that has been introduced called The NOPAIN Act. It would expand patient access to non-opioid related treatments and medication, preventing patients from being pigeonholed into opioids alone. I know you did a great interview this week, Bob, do you want to tell us a little bit about that?
Dr. Bob Goldberg (11m 52s):
Yeah, Stan Golovac, and I, talked about it. He's a pain management expert and spinal surgeon. He said it comes down to two things, education and knowing that there are options available and insurance coverage. Patients and providers need to know about the options beyond opioids. The second thing is those insurance plans need to put all those options on the table. Right now, the way that coverage for pain is focused exclusively on opioids. Again, we emphasize there are many people that benefit from the use of those products, but there is a lot of underlying, long-term, chronic pain that can't be mitigated by it.
Dr. Bob Goldberg (12m 33s):
Stan Golovac, did talk about the options that are available. Just incredibly passionate and a really good guy. Here's part of the interview.
Dr. Stanley Golovac (12m 47s):
It's really an awareness campaign to make patients, and physicians of all levels, understand and appreciate that there are alternatives to therapies, that one should at least determine, if a patient is a candidate or not. Placing a patient on a medication, so be it a narcotic, so be it an opioid, is merely a band-aid for the condition and not a treatment for the condition. We, as physicians, need to be more vocal. We need to explain more. We need to educate more and that's what, "Know your backstory" is all about. Vertos Medical has pioneered a procedure called MILD and it stands for Minimally Invasive Lumbar Decompression.
Dr. Stanley Golovac (13m 33s):
It's an alternative to a condition, which is extremely common, as you probably are aware. It's called Lumbar Spinal Stenosis. This condition, unfortunately, is almost inevitably going to affect all of us in our lifetime and some of us more severe than others. Having an opportunity, to at least be determined, and to determine candidacy of whether I could benefit from this minimally invasive procedure, is something that we should offer all patients. It should be somewhat of a mandatory checklist of an insurance carrier. Why would you want to spend a lot more money, with a poor outcome, which is a surgical decompression, than at least undergoing the opportunity to see a minimally invasive spine surgeon, like myself, to determine whether I'm a candidate or not.
Terry Wilcox (14m 30s):
Bob, here's what I know about insurance companies. They don't like to do new things. They're not very innovative in that way. There's a lot of wait-and-see for new things that come out. You see that in sort-of how they approach coverage of - we're going through all these things right now with accelerated approval, et cetera, et cetera, this thing, that thing. It's no different, I think, in any arm of what they have to pay for.
Dr. Bob Goldberg (15m 3s):
I think that they always see a new thing as additive. I asked Stan that question. I go, "Why won't companies cover this kind of care?" and I think what he said jives exactly with what your observation is. Here's Dr. Golovac to talk about it.
Dr. Stanley Golovac (15m 25s):
Private insurance carriers are notoriously known for saving their monies in order to demonstrate profitability, because most of these companies are publicly traded, as you know. Therefore, whether it's an invasive, or minimally invasive procedure, or a medication that's being dispensed, be it Tier 1 or Tier 2, if a medical Director can save the company money, then that's their primary goal. Awareness to them, that they should at least be entertaining the idea, to avoid a more costly endeavor, be it surgery and other types of procedures, or repeated procedures that don't yield significant improvement.
Dr. Stanley Golovac (16m 8s):
Much like there's a treatment that people undergo called an Epidural Steroid Injection. That is, again, a minimally invasive procedure. It's where you take a specialized needle, and you place it next to the spinal cord in a sacked area called the epidural space, and you place medication there. The culprit of this problem is a ligament. That means it's a compressed area, not an inflammatory area, and a steroid is a glorified anti-inflammatory medication. If you place an anti-inflammatory medicine in an area that's being compressed, it may relieve the area and the symptoms temporarily, but there are no long-term benefits whatsoever.
Dr. Stanley Golovac (16m 51s):
We've demonstrated that with study after study after study. There are no long-term benefits, because of the commonality in the common sense, that you're using an anti-inflammatory for a plugged, clogged area, that is compressed. If you don't decompress the area, then you don't stand to improve the symptoms long term. The whole goal of what a minimally invasive procedure is, is to use something that we call a trocar, which is the size of a baby aspirin. Just think of that - An 81-milligram size of an aspirin is 5.1 millimeters, and we use this device under what's called a fluoroscope, which is an x-ray beam.
Dr. Stanley Golovac (17m 35s):
We guide the tools down to the area of where the ligament exists, and we shave the ligament. By shaving the ligament, you increase the diameter of the canal that's being compressed, therefore, treating and removing the problem and leaving nothing behind. There's no implants, there's no suturing, there's no general anesthesia. It's a same-day procedure. You go to an ambulatory surgical facility. You get checked-in, you have your medications of sedation or antibiotics given to you, the procedure is performed in less than one hour's time, the patient recuperates in the recovery-room, and they go home.
Dr. Stanley Golovac (18m 15s):
I mean, it's a miraculous way to have something done in the comfort of a surgical facility and return home without any compromise to your family, to yourself, and to your wellbeing. Patients usually recuperate within the next one to three weeks and are back doing their normal activities prior to the cause of their symptoms.
Terry Wilcox (18m 42s):
It seems to me, I mean...I come from a whole family of back pain.
Dr. Bob Goldberg (18m 49s):
Back pain hobbyist, like me.
Terry Wilcox (18m 50s):
It's like, okay, that's just part of the trajectory of - My maiden name was Merrill. If your last name is Merrill, you sort-of go down that road. I think, as we talk about all the time, I'm always looking at how can the insurers, everybody that's trying to make decisions on behalf of patients, be the most innovative as possible in how we move forward with that delivery. How can we make sure that we are up-to-speed on all the new treatments, how they help patients, what their cost savings is, because I feel like that's not always factored in? The cost savings.
Terry Wilcox (19m 31s):
We see this when you look at, let's say, an oral medication that maybe once was a Part B medication that had to be infused. You know what I'm saying? All of a sudden, you can go to the pharmacy counter and pick-up this medication, that you used to have to go in, have a nurse, take time off work, and all these things. I think those factors are not always put in. I'm always hoping that when we hear about things like this, that will be the case, because this is a huge market. Obviously, tons of folks and seemed like a really great interview.
Dr. Bob Goldberg (20m 3s):
Just to put a period on all that, minimally invasive procedures. There are other ones, there are spacers, but in this case, the Verto MILD Procedure. It's sort-of like the cataract of lower back pain. Cataract surgery is thirty seconds and you're out. Of course, everyone's going to want to do it, because it's safe, it's quick and it works. The use of it exploded, but in that case, there wasn't anything other than that to deal with cataracts. In this case, you are replacing more expensive spinal fusion surgery, and less effective repeat procedures. You can only go on opioids for a short period of time until the effect wears off.
Dr. Bob Goldberg (20m 50s):
For lower back pain, long-term use of opioids is not according to guidelines. By the way, Medicare and Medicaid do cover other minimum invasive options. Let's hope that the commercial plans get in line with this. Maybe they'll take some of that rebate money and subsidize, I don't know.
Terry Wilcox (21m 5s):
Well, you never know. I guess they do put the kibosh on certain things you just mentioned. Cataract surgery, and we did some work in that space, where Cigna was literally denying cataract surgeries and demanding all these prior authorizations, out of nowhere, that has been turned.
Dr. Bob Goldberg (21m 25s):
I think, down the road, we should really talk about these independent utilization management companies that are used by the insurance companies to say no.
Terry Wilcox (21m 31s):
That was the case and that's why Cigna, in most states - I think 48 states, said we're not going to do that anymore, but two states, they're using one of these independent management companies.
Dr. Bob Goldberg (21m 45s):
Illinois, I think, is one of them.
Terry Wilcox (21m 47s):
To say, well it's not our fault.
Dr. Bob Goldberg (21m 50s):
Terry Wilcox (21m 50s):
It's not our fault. We're not doing that. So anyway, folks, we have more on this story, and others mentioned today, in the episode show notes. This episode of the Patient's Rising Podcast is brought to you by Patient's Rising Concierge. A new service from Patients Rising, that helps patients and caregivers, find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more. Our team is standing by to help you navigate the healthcare system and connect you to the services you need.
Terry Wilcox (22m 49s):
To learn more, visit patientsrisingconcierge.org, or email us and email@example.com. Now, we hear from Field Correspondent, Kate Pecora, who speaks each week with patients, caregivers and advocates from all across the country. Take a listen.
Kate Pecora (23m 1s):
Today, I'm talking with Mugabi. Mugabi is going to tell us a bit about his experience navigating the medical system, specifically when it came to his diagnosis of multiple strokes and how that experience has influenced his path into advocacy. Great to talk with you, Mugabi.
Mugabi Byenkya (23m 16s):
Great to be here. Thank you so much for having me.
Kate Pecora (23m 19s):
Could I have you start-off by sharing a bit about yourself and what led you into this space? I mentioned stroke is a big piece of it. Could you talk about what those past experiences have been?
Mugabi Byenkya (23m 32s):
I had my first stroke when I was nine years old. That one completely paralyzed the right side of my body, and the doctors couldn't really figure me out. The doctors told my parents that I wasn't going to live to see 10 years old. They were wrestling with my mortality, but luckily, I was shielded from that. I've been disabled since then and went through a lot of intensive physical therapy, trying to regain the mobility of the right side of my body. From like nine to eighteen, I was in physical therapy and just managing working through navigating life as a disabled body in an enabled bodied world. When I was twenty-two, I had two more back-to-back strokes, which is like the worst thing that could happen to me, because the doctors had told me that I'm stroke-prone, so I might have another stroke at any second.
Mugabi Byenkya (24m 24s):
Having that other stroke was like my worst nightmare come to life. Then the third one happened a week after the second and those two gave me a chronic pain disorder, which basically feels like my body is on fire 24/7 while being crushed simultaneously. It never really goes away unless I'm asleep. A chronic fatigue disorder is basically permanent exhaustion, and a seizure disorder, which is currently under better management, thanks to new medication. That's pretty much my journey so far as navigating health.
Kate Pecora (24m 59s):
I understand, that in addition to being an advocate for your own kind of symptoms, you've also taken up writing and poetry. Some of the other things that have given a pathway to being able to write down your thoughts about how all of this is impacting your life. I'd love if you could talk about what you have written about. I know you have a book, so we can certainly talk about that, what you go into, and what you want people to take away from your experiences going through some of these diagnoses.
Mugabi Byenkya (25m 29s):
My book delves into my experiences of that first year, and after the second and third strokes, at length. It's the story of that year from December 2014 to December 2015. The whole message of the book, and the whole takeaway is, sometimes you don't get better and sometimes you can't overcome, because there are a lot of disability messaging where the person overcomes the illness, or the person dies. Those are really the only two options that we have. I wanted to be able to tell a story of somebody who doesn't overcome, because I haven't overcome my illness. I still battle it daily, it's still a struggle to manage, and dealing with all the medical gas lighting that I dealt with. Dealing with all the doctors who told me it was all in my head, that it was all psychological, that there was nothing wrong with me, that I should just go see a psychologist and talk about my trauma and I'd get better.
Mugabi Byenkya (26m 22s):
Dealing with all the medical racism, from all the white doctors I saw, who didn't want to prescribe me any prescription painkillers or anything for my pain that was stronger than a Tylenol. When I first saw my first black doctor, which was like eight months after the strokes, and the fact that I saw my first black doctor, eight months after the strokes, is a sad statement on the American healthcare system. The fact that there are so few black doctors. The black doctor shook his head when he saw me and said these white doctors think we're all drug seekers. I appreciated that, and I appreciate him being able to explore more pain options with me, even though they didn't work. There's so much tied-up in the medical system, in the US, that has to do with race, has to deal with class, has to deal with gender and sexuality.
Mugabi Byenkya (27m 11s):
It's just a mine field to navigate when you are marginalized. I get into that at length, in my book, and throughout my poetry. It's a way to process and a way to get a sense of catharsis.
Kate Pecora (27m 24s):
From some advocates, we hear that better communication is the answer, and understanding between your healthcare provider, and you. Other people point to the issue of the fact that some of these pain medications are now so highly regulated, that it's becoming difficult to receive them, even when pain is absolutely unimaginable. What do you think is the way to overcome that and trying different options to help alleviate some of the pain you're having?
Mugabi Byenkya (27m 50s):
I think that all of these options should be available to everybody who needs them, because I was able to try opiates and they didn't help with my pain. From there, I was able to say I can rule these out and can move onto other things. That option was only presented to me, because of the black doctor, who I saw. If I hadn't had seen that black doctor, that option would've never been presented to me, and I would've never known if opiates would've been effective or not. Opiates definitely do a doozy on the body. I dealt with the addiction. I dealt with the pills whispering to me, like literally. I dealt with the withdrawal and everything that puts your body through, which is excruciating, and also feel like doctors should do a better job of giving patients a heads-up.
Mugabi Byenkya (28m 36s):
It's a terrible experience to go through and doctors prescribe medication without really getting into side-effects, withdrawal, what it's going to be like coming off of it, what the likelihood is like if it doesn't work for you and what's next, because they have one or two things on their checklist. When it isn't that, they just give up on you, which has been my case with all doctors that I've seen.
Kate Pecora (29m 4s):
One of the things that has worked out for you is pacing medications. Can you explain what that is, how that idea was brought to you and what your experience has been with pacing?
Mugabi Byenkya (29m 17s):
Pacing has been revolutionary for me, because when I got out of the Mayo Clinic, I was very much pushed to work a 40-hour work week. They told me, after the pain rehabilitation clinic, that working a 40-hour work week is possible. It's possible by everybody, and you should push yourself to that, because you should be able to do it. I increased my hours slowly, by slowly, by slowly. Once I hit a twenty-hours of work a week, my body hit a wall and it couldn't go past that. I called my case advisor, and was telling her that, then she got angry with me and was like, "You're going to mess-up our research.
Mugabi Byenkya (29m 57s):
You're going to mess-up our statistics." I realized that they were just manipulating all these statistics, because all these statistics they have of patient outcomes, are only really reflecting what happens for the first six weeks out of the Preparer Rehabilitation Program. After that, everybody I was in the program with, has gone through the highs and the lows and a lot of lows. I spent two years pretty much bedridden. That was a consequence of pushing myself too hard, which was what was encouraged by the program. Ever since I discovered pacing, over the past couple of months, and limiting my activity - I limit my like text processing activity, or Zoom activity, or speaking to people activity, to like four to five hours a day.
Mugabi Byenkya (30m 45s):
After that, I physically feel my body starts spasming, because my body is telling me it's too much. Then I stop and I do my physical therapy and just rest and watch TV for like two hours. Through doing that, I'm able to do less in a day, but I'm ultimately able to do more, because I don't flare nearly as much as I used to. I don't crash nearly as much as I used to. I don't go into seizures nearly as much as I used to. That's also thanks to the new medication, but pacing has been such a lifesaver for me. I don't know why it wasn't suggested to me much earlier. So many people, who deal with the post exertion or malaise, deal with the same thing where you can't push your body past a certain point.
Mugabi Byenkya (31m 25s):
You have to accept the limitations, and move within them, rather than trying to push yourself and then crash, and push yourself, and crash, and that boom bus cycle just never ends.
Dr. Bob Goldberg (31m 46s):
Thank you, Kate. Now we turn to this week's patient correspondent who is an Air Force veteran and chronic pain patient advocate, Colonel Tom Norris.
Colonel Tom Norris (31m 55s):
My name is Tom Norris. I live in Los Angeles, California, in Congressional District 37. I've lived with chronic back, hip and groin pain for over thirty-seven years. I've been a chronic pain advocate for twenty-seven years in organizations like Patients Rising, American Chronic Pain Association and US Pain Foundation. During this time, I facilitated five different support groups. I'm currently facilitating two virtual support groups that include approximately 500 members from across the United States. I recently testified before California Senate committee in support of AB 2585, which provides coverage for non-pharmacological pain management treatment.
Colonel Tom Norris (32m 43s):
I encourage everyone with chronic illnesses to make every effort to ensure their voice is heard to improve our healthcare and pursue lives of quality.
Dr. Bob Goldberg (32m 51s):
Colonel, thank you for sharing your story today and thank you for your service. We want to hear from more patients as part of this segment. You can join the podcast, and you can become our next patient correspondent, simply by emailing Terry, and me, at firstname.lastname@example.org.
Terry Wilcox (33m 9s):
Thank you for joining us for today's episode. If you learned something new, we hope you'll share this episode with a friend. This helps us continue to elevate the voices of patients and caregivers all across the country.
Dr. Bob Goldberg (33m 21s):
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Terry Wilcox (33m 30s):
Well, speaking of new episodes, we'll be right back here again next Friday with the latest news and patient stories. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy.
Ahead of Rare Disease Day, Congresswoman Cathy McMorris Rodgers (WA-05) joins the podcast to discuss new legislation that would ban the use of a discriminatory health care metric, quality adjusted life year, or QALY. Learn ho...
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