What do patients really think about clinical trials? Do they trust them? Are they wary? Today’s episode features ., who breaks down a survey project from Patients Rising that determined some surprising results. We also speak with , a patient...
What do patients really think about clinical trials? Do they trust them? Are they wary? Today’s episode features Jim Sliney Jr., who breaks down a survey project from Patients Rising that determined some surprising results.
We also speak with Myisha Malone-King, a patient advocate who was diagnosed with Crohn’s disease over 14 years ago and who recently participated in a clinical trial. Hear why her relationship with her doctor was instrumental in her health.
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Myisha Malone-King 0:00
The reason I decided to get involved with the clinical trial because even though it's research, it can potentially help hundreds of 1000s of people.
Terry Wilcox 0:12
Clinical trials produce important research and data for new treatments. But what do patients really think about them? Do they embrace them? Or are they distrustful? We surveyed 380 people of color who live with IBD to get their thoughts on clinical trials, access to treatments, and so much more. Find out what we discovered up next. Welcome to the patients rising podcast. I'm your host, Terry Wilcox, CEO of patients rising. I'm joined by my co host, who says it's been so hot that the eggs in his refrigerator hatched. He's Bob Goldberg, co founder of the Center for medicine in the public interest. Well,
Bob Goldberg 0:52
I was gonna make a smoothie Terry Fox, I'm trying to lose some weight, but I wound up eating buffalo wings instead. Terrible. Yeah, I am not turning the podcast into a cooking show. And I'm not gonna get us booted off. So as you know that what we do on the podcast is discuss health policy news from Washington DC that impacts millions of Americans who live with chronic illness will explain what new legislation means for you. And we'll give you tools and resources to help you become an effective healthcare advocate.
Terry Wilcox 1:27
On the menu for today, we are unpacking the results from a patient's rising survey called engaging people of color with inflammatory bowel disease. We launched this survey in response to what we've heard from patients in our community, and to address the research gap in this space.
Bob Goldberg 1:43
And in recent news, we'll discuss what's driving the ongoing shortage of critical cancer drugs, and what new rules from the Biden administration to curtail what they refer to as junk health plans means for you and your ability to access care.
Terry Wilcox 1:59
But first, we're starting with our survey. Jim Sliney, Jr, Chief patient Officer of patients rising and a friendly face to many of those listening in our audience led to charge for this survey and explain the goal of the project.
Jim Sliney 2:13
Patients rising conducted the engaging people of color with inflammatory bowel disease project because from listening to our audience, we realized that there was a disconnect between what is commonly understood about inflammatory bowel disease, and what the experiences of people of color were having about inflammatory bowel disease. So we wanted to do something that can help build a bridge between those two different understandings of the disease, and how it's experienced by people.
Terry Wilcox 2:51
We were lucky to partner with several other patient groups, including IBD, moms, among others, to reach 380, people of color who live with IBD. There were two really interesting findings that stood out to us. First, patients are not very comfortable talking to their doctor about their disease. Here's Jim explaining those results and why it's concerning.
Jim Sliney 3:14
People are more comfortable speaking with their inner circle their loved ones, about the frank nature of their disease than they are with physicians. And that means there needs to be some kind of educational offering that bridges that disconnect, we have to get patients more comfortable speaking with their physicians about their disease. Because if you cannot speak frankly, with your doctor, you're much less likely to get the treatments that you really need in order to improve your condition.
Terry Wilcox 3:51
Now, the second interesting finding which was extremely interesting to me personally, clinical trials are viewed in a positive light.
Jim Sliney 4:00
We hear a lot about how people of color may be distrustful of clinical trials. With a history of things like the Tuskegee experiments, a general disconnect between people of color and access to clinical trials. We expected people would tell us quite often that they felt distrustful of them. But that turned out not to be the case. We found that for most inflammatory bowel disease patients of color, that more than half of them had been spoken to by their doctor about clinical trials. This was quite surprising. What we didn't learn is whether that translated to them actually participating in clinical trials. We're really just seeing if the communication was there. And we're happily surprised to see that it was and when asked, frankly about whether people trusted clinical trials in June General, people were far more positive about clinical trials than we expected. So that was another surprising finding. And I think that means that the door is open, even if it's just open a little to changing the landscape of inflammatory bowel disease research to include more people of color in clinical trials.
Terry Wilcox 5:25
So this was really interesting to me. Because I've been told time after time, people of color, they don't trust clinical trials, Tuskegee, we don't trust clinical trials. And it turns out that that tide may be shifting.
Bob Goldberg 5:37
Yeah, I think this is important finding just for that fact, Terry. In other words, to the extent that you can dispel this myth, and we've had people on the show, Frank Douglas and Lucille Adams Campbell said, it's it's not a fear of trials, it's how do you access them in underserved communities? So if anything, you know, what the survey does is shine a light on what needs to be done next?
Terry Wilcox 6:03
Well, exactly. And so clinical trials, they're seeing a lot more focus lately and so much show that more retailers are trying to move into the clinical trial space. So these other units, when you look at Kroger, Walgreens, and Walmart, they're all starting to develop these, you know, I know Kroger has in many of their stores, something called the little clinic or the Minute Clinic or you know, the Minute Clinic, I think is CVS this thing, but yeah, it's called The Little medical clinic or something like I don't have all the names. But anyway, each of these are Kroger, Walgreens and Walmart they're having in store, you know, clinics of sorts. I mean, these areas, a lot of these stores are in rural communities, right, especially when you look at all of them, actually. And they have access to a lot of underserved folks, right, folks that don't have access to these things. And what an amazing thing it would be for your pharmacist to be able to look at your history, what drugs you're on what you're, you know, everything that they can know about you and say, You know what, I think there's a clinical trial for you.
Bob Goldberg 7:07
Yeah, overlooked source once again, the pharmacy community can play a pivotal role in improving healthcare access. Along those lines, Terry, we also spoke this week with a patient advocate from our community. Her name is Maisha Malone King. She was diagnosed with Crohn's disease over 14 years ago, and recently participated in a clinical trial. So her relationship with her doctor and her drive to help others is what led her to participate and encouraged others to do so.
Myisha Malone-King 7:40
My gastroenterologist is really big on clinical trials, like he bring it up to all his patients, even if they say no, he's really big on research and clinical trials. And, you know, being an advocate for clinical trials studies, so he basically was like, you know, my Isha, I have this clinical trial, when I bring it up to you, I want you to know, the pros and the cons, I want you to read this information on it. And, you know, I thought it was a pretty good thing because the pros outweigh the cons. It's done a lot of good things, and they've been on the market for psoriasis. So, but they never had marketed it for Crohn's and found out in a previous clinical trial to the one that I was in that 97% of the 540 patients that received the actual medication and not the placebo went into clinical remission. And I felt as though it was a great idea and just the way that he presented it and explained it. I felt as though it was a perfect fit.
Bob Goldberg 8:38
So to Myisha, the communication component made all the difference.
Myisha Malone-King 8:43
My gastroenterologist if I have any questions he's so informative, he's one of them doctors that is so hard to find good doctors nowadays that doesn't wash you out the door he will take as much time with you even spend as much time to to explain everything to make sure you understand and he could have another patient and he will he spent the same amount of time no matter what you're discussing. He want to make sure that when you leave, you know everything, even give you printed out documents, he'll send it in your email and then call three days later to follow up to see if you understand the information that he gave you or if you need to explain anything.
Terry Wilcox 9:18
Now the big question after the surveys that Jim and his team did, is what comes next. And how do we use this data. We mentioned earlier that some but not all patients are comfortable speaking frankly about their disease with their doctor, which could make it harder to get treated. Now Jim says that learning opportunities to help patients better communicate with their doctors can help with this.
Jim Sliney 9:40
Now this isn't specific just to inflammatory bowel disease, but it certainly shone a light on a disconnect between patients and doctors as far as communication is concerned. If we can help patients, speak the language of doctors and understand the language of doctors People will then feel more comfortable speaking frankly, with their doctors about their symptoms, and frequency, and disease. And this means that there'll be more opportunities for successful treatment of the symptoms and disease. So this is a communication issue. If nothing else, it's a communication issue that has to be breached, between patient population, and those who treat those patients. So we're launching a self advocacy course, in July of 2023. One of the lessons in the self advocacy course curriculum is how to better communicate with your physician. We're hoping that this is going to be able to solve some of that disconnect that we observed in this project.
Terry Wilcox 10:47
I am very excited about the Patient Learning Center launching this month. There's a lot of great information for patients. You know, we have two different types of patients and patients rising, we have patients who come to patients rising to learn more about how to navigate health care. And their focus really is on managing and navigating their disease and all the different lanes that go with that. And it's not so much about legislative advocacy, which we also have many advocates that do. So this course is really speaking to them. And we're very excited to launch it.
Bob Goldberg 11:19
Well, a big thank you to Jim and Maisha for joining us today and we'll have a link to the white paper and the survey of the ad produced in the show notes so you can learn more and we'll have Mason's information in the show notes as well, so you can connect with her online.
Terry Wilcox 11:40
This episode of the patient's rising podcast is brought to you by the patient's rising helpline. Our helpline is a free service that connects patients with the health care resources they need. Our team of navigators has helped hundreds of patients with a range of issues including medical transportation, understanding insurance coverage, and so much more. Have a healthcare question or a challenge. Our team is ready to help to get in touch leave us a voicemail or send us an email using the link in the show notes.
Bob Goldberg 12:11
Up next, we have some recent health news to cover. The cancer drug shortage is still raging. And we should note this isn't a new problem. It's an old new problem. Former FDA commissioner Scott Gottlieb talked about this on a recent CNBC appearance. So Terry, and I did a piece before Scott went on on my substack about why people are concerned about the cancer drug shortage as they should be. And these are generic drugs, mostly, that are in short supply. Because make long story short, the price that people will pay to the PBMs and excetera is not high enough to make a profit. Only a handful of cancer drugs make a profit they support all the other drugs that are in the pipeline are being produced for generics. It's just like new investment. Why can't we understand that the same market forces that applied to and created the drug shortages and cancer drugs, applies to new medicines for rare diseases? And everything else in the inflation Reduction Act?
Terry Wilcox 13:18
Well, I don't I don't know. I don't think that people think that broadly, when they think about this stuff. Right now we're really, you know, obviously the focus is on why don't we have the cancer drugs we normally have. These are generic cancer drugs, which is true. And the truth is exactly what Scott said in that piece, which is, you know, there's not enough manufacturers, there's not enough margin people are getting out of it. Even companies like Teva are getting rid of their generic units. If there's no margin, and how on earth do you expect companies to continue to innovate and have state of the art facilities? You know, Scott does mention in the in the interview that could we have some sort of verification system that if their companies are willing to invest in that they get some sort of seal? Yeah, maybe. I mean, perhaps that'll work. But also, why don't we try just.
Bob Goldberg 14:11
How about just raising the prices?
Terry Wilcox 14:13
Just raise the prices a little bit
Bob Goldberg 14:15
Easier said than done?
Terry Wilcox 14:16
Yeah, I just I find this whole argument, somewhat tiresome and the person who's always losing it, his argument is the patients. So that's something that we'll be watching. We'll keep bringing you news on. So what else is in the news, Bob?
Bob Goldberg 14:30
Well, the Biden administration in an effort to sort of shore up the Affordable Care Act, wants to limit the ability to purchase short term insurance plans now. Their rationale for it is that short term insurance plans are for people that are in between jobs, or maybe don't need comprehensive coverage, which of course is required under the Affordable Care Act. So it's steering people away who are healthy from the insurers, and therefore, you know, reducing the risk pool that you could use to sort of spread the cost of health care around. So I've heard this argument for a long, long time. And really the thing you want to do, and maybe this is what insurance companies should think of doing is keeping people healthy, who are sick, get paid to do that. And that'll go a long way. The other thing I'm concerned about is that, for many people who are here who are undocumented, or do fall in between jobs and need insurance, this is a lifeline to them.
Terry Wilcox 15:37
Well, to your point, I agree with you on all of that, Bob, one of the things that I'll say about these short term plans, which are a lifeline, especially if you're healthy. If you're relatively healthy, it's a lifeline. We do it patients rising have a very, it's was heartbreaking, almost patient's story around a family who used one of these plans. And I think I've told this story before, but I'm gonna tell it again as quickly as possible that she got the plan. I don't know like day 26 or something, the plan of having the plan, she got a mammogram. And two or so weeks, not even maybe 10 days later, or whatever it was, there was a lump in her breast a week or so later, she got diagnosed with breast cancer. She went through all of the chemo treatment, thinking everything was covered, everything's covered, everything's fine. And the insurance company came back and said, No, because you got the mammogram, on the 27th, before your 30 days kicked in for pre existing conditions. We're not covering anything because this was a pre existing condition. So what I say to this is, that's just insurance companies being insurance companies, to be honest with you. So I just caution everyone who gets any type of insurance plan, whether it's a three month plan or a six month plan on when your policies Yeah, read the fine print. Now, as always, folks, we'll have links to all of these stories today in the show notes. Thank you for listening to today's episode of the patients rising podcast. And don't forget to pass this episode along to a fellow advocate.
Bob Goldberg 17:15
We have more episodes on the way and you're not gonna want to miss those either. So make sure to follow us on your favorite podcast app.
Terry Wilcox 17:24
We'll be right back here on Monday with another new episode, we speak with the world's longest living Gleevec patient about why accelerated approval is so important. Don't miss that conversation. Until then, for Bob and everyone at patients rising. I'm Terry Wilcox, stay healthy.