Newsflash – Costs still on the rise for drugs for neurological diseases, especially Multiple Sclerosis

A USC study of prescription data shows that people with Medicaid or Medicare Part D may be missing out on powerful new obesity and diabetes drugs

The costs that individuals pay out-of-pocket for branded medications to treat neurological diseases such as multiple sclerosis (MS), Alzheimer’s disease, and Parkinson’s disease continue to rise, particularly for MS drugs. According to a study published in the online issue of Neurology®, the medical journal of the American Academy of Neurology, on October 30, 2024, the average out-of-pocket expenses for MS medications increased by 217% over a nine-year period.

Costs have dropped for medications where generic versions have been introduced.

“In some instances, the out-of-pocket costs for patients have risen significantly more than the total cost of the drug itself, indicating that patients are bearing an unfair share of these cost increases,” said Amanda V. Gusovsky, MPH, PhD, from The Ohio State University in Columbus. “In other cases, when generic drugs were introduced and overall costs decreased, the out-of-pocket expenses for patients did not fall, meaning they did not benefit from these reductions.”

For the study, researchers used a large private healthcare claims database to analyse the costs of medications for five common neurological diseases from 2012 to 2021. The study included 186,144 individuals with epilepsy, 169,127 with peripheral neuropathy, 60,861 with Alzheimer’s disease or other forms of dementia, 54,676 with multiple sclerosis (MS), and 45,909 with Parkinson’s disease.

MS drugs had the largest cost increase, with the average out-of-pocket drug cost increasing from $750 per year in 2012 to $2,378 per year in 2021. All MS drugs had increasing out-of-pocket costs.

“MS medications costs remain exceptionally high and pose a substantial financial burden to people with this devastating disease,” Gusovsky said. “It’s imperative that we develop policy solutions such as caps on costs, value-based pricing and encouraging production of generic drugs to address this issue.”

The study found that the cost of several drugs for these diseases decreased by 48% to 80% in the years after introducing a generic version.

Gusovsky said both neurologists and patients should consider using generic or biosimilar drugs where available to control costs. She noted that previous studies have shown that high costs can create burdens such as medical debt, skipping food or other essentials, or not taking drugs as often as prescribed, which can possibly lead to complications and higher costs later.

Communication with doctor during first visit affects pain patients’ outcomes

How to talk to your doctor

Chronic pain — defined as daily or significant pain that lasts more than three months — can be complicated to diagnose and treat. Because chronic pain conditions are clouded with uncertainties, patients often struggle with anxiety and depression, and they and their doctors frequently find these conditions challenging to discuss and manage, studies have indicated.

A recent study of 200 adults with chronic neck or back pain, led by University of Illinois Urbana-Champaign communication professor Charee Thompson, found that effective physician-patient communication during the initial consultation helps patients manage their uncertainties, including their fears, anxieties and confidence in their ability to cope with their condition.

“We found that providers and patients who perceive themselves and each other as competent medical communicators during consultations can alleviate patients’ negative feelings of uncertainty, such as distress, and increase their positive feelings about uncertainties, such as their sense of hope and beliefs in their pain-management self-efficacy,” Thompson said. “Providers and patients successfully manage patients’ uncertainty through two fundamental medical communication processes — informational and socioemotional, each of which can have important clinical implications.”

According to the study, informational competence reflects patients’ abilities to accurately describe their symptoms and verify their understanding of doctors’ explanations and instructions, as well as clinicians asking appropriate questions, providing clear explanations and confirming patients’ understanding. The extent to which doctors and patients establish a trusting relationship through open, honest communication and patients’ feelings of being emotionally supported by the physician reflects socioemotional communication competence.

Thompson and her co-authors—Manuel D. Pulido, a communication professor at California State University, Long Beach; neurosurgery chair Dr. Paul M. Arnold and medical student Suma Ganjidi, both of the Carle Illinois College of Medicine—published their findings in the Journal of Health Communication.

More than 51 million adults in the U.S. — about 21% of the population — experienced chronic pain in 2021, resulting in substantial healthcare costs and lost productivity, according to a report on the U.S. Centers for Disease Control and Prevention’s website.

The current study was based on uncertainty management theory, the hypothesis that people faced with uncertainty about a health condition appraise it and decide whether obtaining information is a benefit or a threat. For example, patients may seek information about the origins of a new symptom to mitigate their anxiety-related uncertainty — or, conversely, they might avoid information-seeking so they can maintain hopeful uncertainty about their prognosis, the team wrote.

The study was conducted at an institute in the Midwest composed of several clinics and programs that treat diseases and injuries of the brain, spinal cord, and nervous system. The study sample, ranging in age from 18 to 75, had pain in their neck, back, buttocks, and lower extremities. About 59% of the patients were female.

Before the consultation, the patients completed surveys rating how they experienced and managed their pain and their certainty or uncertainty about it. They and the providers also completed post-consultation surveys rating themselves and each other on their communication skills.

The patients rated how well the provider ensured that they understood their explanations and asked questions related to their medical problem.

To determine if patients’ levels of uncertainty changed, on the pre- and post-consultation surveys the patients ranked how certain or uncertain they felt about six aspects of their pain — including its cause, diagnosis, prognosis, the available treatment options and the risks and benefits of those. The patients also rated themselves on catastrophizing — their tendency to worry that they would always be in pain and never find relief.

Patients’ feelings of distress were reduced when they and their physician mutually agreed that the other person was effective at seeking and providing medical information, and when the patients felt emotionally supported by their doctors, the team found.

“Patients’ ratings of their providers’ communication competency significantly predicted reductions in their pain-related uncertainty and in their appraisals of fear and anxiety, as well as increases in their positive uncertainty and pain self-efficacy,” Thompson said. “Providers’ reports of patients’ communication competency were likewise associated with decreases in patients’ pain-related uncertainty and marginally significant improvements in their positive appraisals of uncertainty.”

Sustained remission of diabetes and other obesity-related conditions found a decade after weight loss surgery

Study finds that type 2 diabetes patients treated with GLP-1RAs who lowered their BMI also reduced their cardiovascular risk

A study published in the New England Journal of Medicine found that ten years after undergoing bariatric surgery during their teenage years, more than half of the participants maintained significant weight loss. Additionally, many of these individuals showed improvements in obesity-related conditions, including type 2 diabetes, high blood pressure, and high cholesterol.

“Our study demonstrates remarkable results from the longest follow-up of weight loss surgery during adolescence, confirming that bariatric surgery is a safe and effective long-term strategy for managing obesity,” stated lead author Justin Ryder, PhD. He is the Vice Chair of Research in the Department of Surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago and an Associate Professor of Surgery and Pediatrics at Northwestern University Feinberg School of Medicine.

Bariatric surgery is significantly under-utilized in the U.S., with only one out of every 2,500 teens with severe obesity undergoing the procedure. Based on existing recommendations, nearly five million adolescents qualify for effective weight loss interventions, such as bariatric surgery.

Hillary Fisher, now 31 years old, is glad she decided to undergo surgery at the age of 16. She was one of 260 adolescents who participated in the long-term Teen-LABS study.

“I felt overwhelmed by the daily struggles I faced due to my weight, health issues, and bullying in high school,” Ms. Fisher said. “After several unsuccessful attempts to lose weight, I weighed 260 pounds, and we decided that bariatric surgery was the solution. It changed my life; the improved health and self-esteem that came with losing 100 pounds were significant for me, and I would absolutely do it again.”

Notably, the study found that 55 per cent of the participants who had type 2 diabetes as teenagers and underwent surgery were still in remission of their diabetes at 10 years. 

“This is considerably better than the outcomes reported in people who underwent bariatric surgery as adults, a major reason why treating obesity seriously in adolescents is so important,” added Dr. Ryder. 

Indeed, a recent multi-centre randomized controlled trial found diabetes type 2 remission in adults to be 12-18 per cent at seven to 12 years after bariatric surgery.

Predicting the future and Autism

Your brain processes what you see and makes continuous predictions based on your experiences. This predictive process may be less refined in autistic people.

When someone throws a ball at you, you instinctively know to catch it—even before you consciously think about it. In the past, people believed that the brain worked like a camera: an image of the flying ball enters through your eyes and is then processed by your brain. After that, the brain programs a suitable action in response. However, doesn’t that process take too long? Would you still be able to catch the ball in time?

Researchers Christian Keysers, Giorgia Silani, and Valeria Gazzola reveal that the brain processes information differently than expected. Christian explains, “Your brain doesn’t simply react to what your eyes see; instead, it predicts what will happen based on your expectations and past experiences. Doing this keeps our actions in sync with the ball, even though it takes the brain several hundred milliseconds to process visual input and coordinate movement. It plans to ensure enough time to execute the action and catch the ball. The image that enters through your eyes is primarily used to verify whether your expectations align with reality. It is only when there’s a discrepancy between your expectations and what you see that your brain relies on visual input to adjust its predictions more accurately.”

Predicting others

Ms Gazzola shared, “What’s interesting is that we use our motor programs and somatosensory cortices to predict the actions of others. For instance, when you perform a physical action, like lifting a carton of milk to pour some into your coffee, you have certain expectations about the carton’s weight and how it should feel in your hand as you lift it. Typically, you don’t consciously notice the weight of the carton because your brain has already predicted it. However, if someone else has finished the milk and the carton is much lighter than you anticipated, the sudden discrepancy between your expectations and the sensory feedback will catch your attention.”

“When you see someone else do so, you don’t directly feel the weight of the carton. Still, you can make predictions using your motor programs and test them against what you see. So, you still feel surprised if the carton flies skywards much faster than you expected. We think this has to do with so-called mirror neurons, cells within your motor cortex that become active when you see someone else act. This acts as a sort of ‘shortcut,’ allowing you to use your motor programs and the predictive machinery necessary for your actions to predict the behaviour of others.”

But what about emotions? Gazzola explains: “We know that regions in our brain that are involved in our own emotions become active while we witness the emotions of others. However, how we predict the emotions of others is not fully understood. Reviewing
the literature revealed that the regions in our brain that are active when we receive a reward or punishment also become active when someone else receives a reward or punishment. Reward and punishment are therefore valuable predictors for the emotions of others.”

Complex system

Christian Keysers: “Imagine I have a button, and every time I press it, an actor starts screaming in pain. If I do this five times, your expectations change: the first time, it’s unexpected, but by the fifth time, you can predict what will happen.”

“According to the traditional theory of perception, where the brain only processes the image you see, you should see the same reaction in the brain each time. But if the outside world primarily serves to test your predictions, you’d expect a strong brain response the first time and a much smaller response the last time because you already know what will happen.”

“So what happens in the brain? Over many studies, we have seen that it’s quite complex. Some brain areas respond relatively consistently across all five times. At the same time, there are also brain regions where activity changes across the five times. In this review paper, we look at the many studies that have emerged on the topic to propose how these different brain systems organize into a coherent predictive brain. For example, if some actions become predictable, your premotor cortex knows how to act as your body. This region will then inhibit visual regions in your brain, leading to less visual input. What you perceive is no longer what you see but expect to see. Only if something unexpected happens will this inhibition become ineffective. The visual areas now show a strong response sent forwards to the premotor cortex to revise the predictions”.

Predictions and autism

It’s believed that the predictive system in people with autism is less well-tuned. This makes the world around them more unpredictable, leading to less suppressed stimuli. Christian Keysers: “Imagine standing in a crowded room with many people. Because our brain makes a lot of predictions, we can ignore most stimuli and focus only on what’s important. But when this predictive system doesn’t work well, such a busy environment can suddenly feel overwhelming.”

“The brain is complex and has the unique ability to adapt. It’s interesting to realize that your brain isn’t just a camera simply processing what comes in. Instead, your brain constantly operates based on predictions. Your brain is always ahead and continuously constructs what the world should be.”

Rhuematoid arthritis- The couples who cope together, stay together

An Australian-first study has lifted the lid on how couples living with rheumatoid arthritis cope with the debilitating disease finding that those who cope with problems together had less psychological distress and better relationships.
An Australian-first study reveals that couples coping with rheumatoid arthritis together experience less psychological distress and stronger relationships.

The study, published in The Journal of Rheumatology, examined dyadic coping—when a couple engages in joint problem-solving information gathering, sharing feelings, and demonstrating mutual commitment—from both partners’ perspectives. T. “Dyadic coping refers to how couples work together to manage the challenges of one partner’s illness. This process is a key predictor of how well patients adjust to their disease and overall well-being,” says Dr. Manasi Murthy Mittinty from the College of Medicine and Public Health. . The sample consisted of 163 couples.

Dyadic coping fosters a sense of unity, helping couples create strategies together to deal with stressful situations, and serves as a protective factor that reduces the likelihood of divorce.

Collaborating as a couple is essential for navigating the challenges posed by one partner’s illness, especially in cases of rheumatoid arthritis.

Rheumatoid arthritis (RA) is an autoimmune disease that can lead to irreversible tissue damage, progressive deformity, and pain. Approximately 18 million people worldwide are affected by RA, including nearly 456,000 Australians.

Although the management of rheumatoid arthritis (RA) has improved significantly due to biologic treatments, many patients still experience severe physical pain and stiffness. Additionally, around 35% of individuals with RA report mental and behavioural conditions, such as bipolar disorder, mania, and anxiety disorders.

“We found that supportive dyadic coping leads to lower depression, anxiety, and stress for patients, as well as improved relationship quality. In contrast, negative dyadic coping increases psychological distress and reduces relationship quality for both partners,” says Dr Mittinty.

“By examining the interpersonal dynamics of couples grappling with chronic disease, we hope to significantly improve the quality of life for patients with rheumatoid arthritis and their spouse.”

The study is the first in Australia to report dyadic coping from the perspective of both participants with RA and their spouses.

RA patients and their spouses were invited to participate in an online survey study if they were more than 18 years old and had lived together for more than a year. The survey included the Chronic Pain Grade Scale, Dyadic Coping Inventory, Depression Anxiety Stress Scale, and Dyadic Adjustment Scale.

“The results underscore the interconnected nature of dyadic coping, highlighting the need to consider both viewpoints in understanding its impact on couples.

“For decades, the focus has been limited to reducing patients’ illness-related distress and improving patient outcomes. More recently, scientists have adopted a new approach into understanding how illness in a spouse can affect the couple’s relationship and the other spouse’s well-being.

“Our findings demonstrate the reciprocal nature of dyadic coping that transpires between patients with RA and their spouses and showcases that integrating dyadic coping training in disease management may be a valuable resource for enhanced mental health outcomes and relationship quality of couples,” she adds.