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I'm john strum, and this is real talk, mississippi.
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It's January 13th and we have a lot to talk about. With the holiday season firmly in the rear view mirror, we're talking about progress in the mission to end Ms.
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Forever.
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We're looking at how people are turning to artificial intelligence for their health care. There's a call to Congress from the American Medical association to extend access to telehealth, and we're remembering David Mitchell, a leader in the ongoing battle to lower the price of prescription drugs in America. But before we get to my reflection on David Mitchell and you hear from David directly, there are a few other things that you should know about. Since its inception, we've often discussed the Pathways to Cures Roadmap, a strategy designed to coordinate global efforts to cure Ms. By virtue of three different pathways stopping Ms. Progression, restoring loss function and ending Ms. The STOP pathway is focused on halting disease activity from the point that an individual is diagnosed with Ms. The restore pathway is about repairing the damage to the central nervous system, enabling someone to maintain or improve physical function that's been lost to Ms. And the END pathway is dedicated to preventing new cases of Ms. According to a review of the global Ms. Research landscape published in 2024, of the 2,346 Ms. Related research projects that were funded by Ms. Societies or government AGENC around the world, only 197 were devoted to the end pathway, accounting for just 6% of the global funding for Ms. Research. The pathways to cures roadmap was updated in 2024 and that stop pathway was more specifically focused on targeting very early detection and treatment, which aligned it with preventing new cases of Ms. Researchers in other immune mediated diseases have already launched clinical trials designed to prevent the development of disease or to delay the pre symptomatic phase of a disease from progressing to the point where clinical symptoms develop. As a result of this scientific focus, last spring, Ms. Canada and Ms. Australia sponsored an international workshop designed to develop a global research agenda for preventing Ms. As a result of this scientific focus, last spring Ms. Canada and Ms. Australia sponsored an international workshop designed to develop a global research agenda for preventing Ms. Participants in this workshop included people living with ms, clinicians and researchers with expertise in adults and pediatric ms, along with experts in other immune mediated diseases, epidemiology, clinical trials, immunology, virology, genomics, artificial intelligence, biomarkers, behavioral science and public health. The result of the workshop is a paper that was published this past week setting the global research agenda for Preventing multiple sclerosis. The paper defines prevention strategies that are largely determined by timing. For example, one prevention strategy is focused on preventing Ms. Risk factors before they manifest in an individual. This means finding ways to effectively eliminate lifestyle related risk factors like obesity and smoking, as well as finding ways to prevent the Epstein Barr virus, which has been identified as a necessary trigger for Ms. Secondary prevention involves detecting Ms. In its earliest stages. This could be years before someone becomes symptomatic and then stopping Ms. From reaching that next stage. The paper concludes with next steps that were developed at the workshop. These include identifying biomarkers for immune system dysregulation and biomarkers that indicate the clinical presentation of Ms. The paper also highlights the need for linking biomarkers to long term outcomes so neurologists will be able to understand the patient outcomes those early biological warning signs are pointing to. Next steps also include developing cost effective screening tools for Ms. And developing criteria for developing the earliest signs of Ms. Before an individual experiences what are considered to be typical Ms. Symptoms. There's a lot of work ahead here, but the first step in achieving a goal is clearly specifying what that goal is and then identifying steps necessary to get there. It's the same process many of us use when we're planning a vacation. This planning is designed to end a person's Ms. Journey before it even begins. If you'd like to review the details of this paper, you'll find that link in today's show.
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Notes Foreign.
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We're already seeing how AI is being used in Ms. Research to accelerate the pace of scientific discovery. Just last week, we talked about how artificial intelligence was able to detect two subtypes of ms, and how that discovery could have a significant impact on future Ms. Care. Experts point out that artificial intelligence will also be used to assist clinicians in delivering the best possible patient care. But for millions of people, AI has already replaced Dr. Google as the healthcare expert they turn to most often. According to a recent report, more than 40 million people ask Chat GPT healthcare related questions each day. Open AI, the company behind Chat GPT, conducted a survey last month that found three in five adults in the US had used an AI tool for health or medical questions in the past 90 days. 55% of the survey respondents indicated they used AI to check or explore symptoms they were experiencing, 48% used AI to understand medical terminology, and 40% turned to AI to learn about treatment options. Nearly one in three Americans said they would delay or avoid seeing a doctor if an AI tool labeled their symptoms as low risk. And among the survey respondents who use ChatGPT to check symptoms. About half said using Chat GPT led to a diagnosis. Interestingly, over a four week period in late 2025, Chat GPT received more than 2 million healthcare related questions from less populated states in the US states including Wyoming, Oregon, Montana, South Dakota and Vermont, where so called hospital deserts can be found. Now, a hospital desert is defined as an area located more than a 30 minute drive from a general or children's hospital. These regions often lack specialty services like cardiology, oncology and neurology, contributing to longer travel times, delayed treatment and poorer health outcomes for patients. Even access to traditional general health care is uneven in these areas. Now, AI on its own can't reopen a hospital that's been shut down or replace critical medical services, but it can help people in underserved areas interpret medical information and more efficiently navigate existing gaps in health care access. Meanwhile, according to the American Medical Association, 2/3 of physicians in the U S reported using AI for at least one patient case in 2024. So there's already a massive disconnect between patients and physicians in how AI is being leveraged when it comes to healthcare. In addition to using AI to find answers for symptom related questions, between 1 and a half and 2 million questions about health insurance are submitted to ChatGPT each week. These questions range from comparing health plans to handling billing issues, claims and price transparency. And this is a somewhat ironic situation because the major health insurance companies are using AI to approve or deny claims. So we can have a scenario where an AI application may deny a claim and another AI application may advise a patient on how to contest that denial. This past week, OpenAI launched ChatGPT Health, which will allow you to securely connect your medical records and even your wellness apps so that your conversations with ChatGPT will be grounded in your own health information, making those Chat GPT responses more relevant and more useful to you. While physicians are still wrestling with how to practice personalized medicine, Chat GPT just went ahead and did it. I see the launch of Chat GPT Health as a launch of a new era in healthcare. If anything, Dr. AI is going to be busier than he's already been and and we'll keep you updated on what that means for Ms. Care. As it happens, There may not be a lot of positives that came out of the COVID 19 lockdown in 2020 and 2021, but I think we can all agree that one of those rare bright spots was the broad rollout of telehealth. According to a 2022 Health and Human Services Inspector General report on over 28 million Americans enrolled in Medicare used telehealth during the pandemic, and as Medicare was covering telehealth appointments, commercial insurance companies followed their lead. The American Medical association has published research showing that telehealth has been a good thing for everyone. It's increased access to health care, it's reduced the number of no shows at medical appointments, and in some instances it's even saved money. I think we've seen that telehealth has been especially beneficial to people living with Ms. In rural areas where the nearest Ms. Specialist or even a general neurologist may be hours away. Not to mention people living with Ms. Who face challenges finding transportation to an appointment with their neurologist. Telehealth has virtually erased these obstacles. During the pandemic, Congress waived certain statutory restrictions governing Medicare covered telehealth services. These waivers have repeatedly been extended over the past five years, but as things stand today, they're set to expire at the end of this month. That's why the American Medical association has issued a brief aimed at convincing our lawmakers to take action before time runs out. If you'd like to review the AMA's brief entitled the Case for Permanent Telehealth Policy and Expanded Access to Virtual Care, you'll find that link in today's show. Notes Experts say it's likely that Congress will once again extend the waivers on Medicare covered telehealth restrictions. Some believe that Congress may even make those changes permanent, which would be the right thing to do for millions of Americans. But the much larger issue that Congress isn't taking action on is the high cost of prescription medications. I don't have to remind anyone listening to this podcast that the cost of Ms. Disease modifying therapies is obscenely high. And we're not just talking about relatively new medications. Older medications, some decades old, continue to increase in price without any rational explanation for why or how that happens. On January 2nd, we lost a true warrior in the ongoing battle to lower the price of prescription drugs when David Mitchell, the founder of Patients for Affordable Drugs, now, passed away. I met David in 2018 at an Ms. Society public Policy conference, and he was a guest on episode 31 of Real Talk, Ms. Rather than tell you about David's unending efforts to make prescription medications accessible for everyone, I'm going to reshare the conversation we had in 2018. I wish I could say that a lot has changed since then, but I'll let David do the talking here and you can draw your own conclusions.
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David Mitchell has an incurable blood cancer called multiple myeloma. The cost of his current drug treatment is $450,000 a year. David requires scientific innovation that's going to lead to new drugs for his survival. But he believes that for drugs to be fully effective, people have to be able to afford them. And that's why David's the founder and president of Patients for Affordable Drugs, where he's committed to helping change policy to lower prescription drug prices. Patients for Affordable Drugs is an organization that mobilizes patients and allies at the federal and state levels and doesn't accept funding from any organizations that profit from the development or distribution of prescription drugs. Welcome to the podcast, David.
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Thank you very much, Jonathan.
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Before we get into the work that Patients for Affordable Drugs is doing, can you walk us through how you got to the point of founding your organization?
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Yes. So I was diagnosed with multiple myeloma about seven and a half years ago. And as you mentioned, the drugs to treat my disease are very expensive. And the experience of fighting the cancer and doing it through these expensive drugs was really searing for me. And I became increasingly frustrated as a patient because there were very few patient groups speaking out to try and lower drug prices. And so I was getting up in age. I was wondering if I had a next act. And one day I thought, geez, maybe I should just retire and work on this issue and see if we can change things. My wife said, yes, I could. And so we did, and we established patients for a formidable drug.
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A
You know, a couple of weeks ago, the Healthcare Cost Institute came out with a report that showed that between the years 2006 and 2015, the cost of healthcare almost doubled for people living with multiple sclerosis. And by far the single thing driving what I'll call a catastrophic increase in healthcare cost was the almost constantly rising cost of Ms. Prescription medications. So most of our listeners in the United States are all too familiar with the unaffordability of prescription drugs. So how do we begin to even address this problem?
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C
Well, let me start by saying that we hear. We've heard from tens of thousands of patients across the country, and many of them are multiple sclerosis patients, and they are struggling to buy their drugs. And you know that. Your listeners know that. It's amazing. You mentioned a couple of statistics. One that I am familiar with is that in 2004, cord disease altness cost $16,000, and in 2017, those very same drugs cost $84,000. So it's remarkable. How do we get our AR on this problem? Well, the Whole system is set up to benefit the people who make money on it. The drug companies, the pharmacy benefit managers who run prescription drug insurance programs. Even doctors and hospitals can make more money on more expensive drugs. So we need to get at the whole system. But the starting place in our view is we need to lower list prices that are set by drug companies as the starting point. And one way to do that would be, for example, to let Medicare negotiate directly with the drug companies. Right now, in this country, we're the only country in the world, developed country that doesn't negotiate directly with the drug companies. Instead, with Medicare, we have these pharmacy benefit managers negotiate on our behalf. And the result is that we literally pay two to three times more than people in other developed countries. So we think a starting point would be to allow Medicare to negotiate on behalf of people covered by Medicare, but that would ripple down the whole system and help lower prices. There are other steps we could take too, but that's the first step we could take.
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Well, it's interesting you mentioned Medicare as a federal program. This past year, California became the first state in the country to pass a prescription drug price transparency bill. And while it's not a perfect bill, not a perfect law, it's a step in perhaps a more perfect direction. And I know that other states are looking to replicate California's new law. And I'm wondering if you think that maybe the battle for prescription drug price transparency is going to take place at the state and maybe not the federal level.
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I think it is right now, Jonathan. There is more action in the states by far than there is in Washington, D.C. and there are, as you say, other drug price transparency and notification bills making their way through legislatures around the country. A bill passed in Oregon, there are bills in Colorado, bills in Illinois and elsewhere. Point is to just reiterate what you said. States who have to balance their budgets and who are on the hook for a lot of Medicare Medicaid costs are responding to high drug prices and taking actions. And while drug price transparency and notification bills don't fix the problem all by themselves, as you said, they are stepping the right direction and they're happening in more and more places as they're happening.
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Unfortunately, as the law in California has happened, it's already being challenged in court by the pharmaceutical industry. They have incredibly deep pockets. Even if they feel it's a losing proposition, they can tie this up for years as it works its way up the judicial chain. So just how long term is the fight for affordable drug prices likely to be?
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It's a Long March. There's no doubt about that. We are making progress in the states, and we are, in fact, making some progress at the federal level. And, you know, we look forward to a Congress in 2019 that might be more friendly toward efforts to lower prescription drug prices. But there is progress happening right now, even today. About two hours ago, the Supreme Court handed down a decision in a case that upheld the ability of consumers and others to challenge weak patents in order to clear the way for generics to come to market sooner. The case is called Oil States, and it has it. PhRMA had challenged an administrative process that is faster and less expensive to challenge patents, and the court upheld this administrative process by a vote of 7 to 2. This was a serious defeat for PhRMA, which had gone to court to say, this is not fair. This is taking away our patents without due process in a federal circuit court. And so just today we had a step forward. Now, will the ability to challenge patents faster get us cheaper generics tomorrow? No. But this is going to have an impact for years to come in terms of helping generics come to market faster and to stop the drug companies from using weak patents to block cheaper generics.
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That's good news. Any. Any movement in the right direction is certainly welcome and good news, I guess. I have the $3.5 billion question. Over the past 20 years, pharmaceutical and healthcare product industries have spent more than $3.5 billion on lobbying efforts. They spend more on lobbying than any other industry in the world. How do we effectively offset their efforts at influencing our legislators?
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C
Well, first of all, Jonathan, what you just said is, was just born out. A report came out last week that PhRMA, the main lobbying arm for the drug companies, spent almost $10 million in the first quarter of this year, more than they'd ever spent in a single quarter. So pharma fields under attack and threatened, and that's a good thing. How do we beat them? Well, increasingly there are more groups mobilizing to push for policies that will lower drug prices. So we are all working together. The Multiple Sclerosis Society is certainly a leader in this. But aarp, family physicians, internists, a lot of groups who represent consumers and patients are pushing for change. And so we have more resources in play. But the way we beat them, I honestly believe, is with our voices and our votes. We have got to stand up and demand action in our state legislatures and in Congress to change the policies so that pharma can no longer abuse patients and take advantage of a rig system. So we might not be able to match them Dollar for dollar, we can't. But with enough of us, enough resources, enough organization, and if we all stand up together, we can win some.
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A
I'm glad you mentioned taking action, because one of the most constant themes I would say throughout all of my podcast episodes is reminding my listeners that the most important thing they can do for themselves is to advocate on their own behalf and become activists. And this is certainly an issue that strikes at the very pocketbook of every family who's dependent on prescription drugs. And that's an awful lot of families across this country. So I know I'm going to be when we publish the show Notes for the podcast, I'll be adding phone numbers where people can call the Congressional switchboard and leave word for their legislators about how important this issue is to them. And while I'm doing that, why don't you tell us where people can find out more about Patients for Affordable Drugs and what your organization is up to.
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So come to patientsforaffordabledrugs.org we would ask a couple of things if you want to join with us. A, we ask only that you consider leaving us your story. We take the stories. We have 13,000 stories and they're on a map on our website. We take the stories and elevate them and amplify them to policymakers and elected officials. So, A, please leave us your story. B, we'd like your email address and zip code so that we can follow up with you because we do mobilizations. We did mobilizations in California, for example, in support of the bill you described. And so we reach out and when there's something that we can do together that would help lower drug prices, we contact people and mobilize them. We don't ask for donations from patients because they're struggling enough. They want to leave a couple of bucks with us, they can. But the main thing we want is, is the stories and the email addresses so that we can amplify our voices in Support of change. PatientsForAffordableRugs.org Great.
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A
And once again, we're going to be adding a link to your website on the Show Notes so that people will have very little work to do in order to join forces. And let me thank you once again, David, for leading the charge on such an important issue that impacts the quality of life for just so many families across the country. Thanks for everything you do and thanks for spending a few minutes with us today.
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Jonathan, thank you for your leadership. You know, your leadership and its impact extends beyond the multiple sclerosis community because you're a voice that is speaking out in a way that will help all of us. I'm a cancer patient, but you know all of us, so thank you.
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That's going to wrap up this episode of Real Talk. Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 437. You'll find that link in today's show notes, so you can easily copy and paste it right into an email or a text. Just a couple of weeks ago, a University College of London research team published a paper identifying two new biologically informed Ms. Subtypes. Next week, you'll meet the scientist who led that research when he walks us through how understanding these subtypes will impact the future of Ms. Care. It's an episode I know you're not going to want to miss. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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Sam.