TD News
Transcranial Direct Current Stimulation Shows Promise as
TD Treatment
New research indicates that transcranial direct current stimulation (tDCS) could be an effective, well-tolerated treatment for the facial-oral motor symptoms of tardive dyskinesia. The study, published on October 1, 2024, in Clinical Neurophysiology, aimed to evaluate the efficacy and safety of tDCS in chronically hospitalized patients with schizophrenia.
Study investigators randomly assigned sixty-four inpatients who met the DSM-4 criteria for schizophrenia and TD to either active (n=35) or sham (n=29) treatment. At baseline, the gender, age, and marital status of the groups were matched; disease course was not. The duration of illness in the active stimulation group was higher than in the sham group.
Patients received treatment fifteen times, each lasting 30 minutes, with an intensity of 2mA. The study’s completion rate was 81.25% (n=52). Adverse effects of tDCS were assessed with an experimenter-administered open-ended questionnaire throughout the study.
Compared with the sham group, patients in the active group experienced a significant decrease in both their total AIMS score and the facial-oral subscore (P<0.05). An improvement of at least 30% in total AIMS score was seen in the active treatment group compared with the sham group. Additionally, the positive treatment effect was more pronounced after fifteen sessions, achieving a higher level of effectiveness compared to ten sessions.
“In addition to drug therapy, some physical therapy methods have also been used in exploratory treatment studies for TD,” researchers wrote. “Of the non-invasive brain stimulation techniques designed to modulate neural excitability, transcranial direct current stimulation represents an attractive treatment option given its low cost, safety, feasibility and simple applicability. The results of our study are expected to provide a novel perspective for the treatment of patients with chronic schizophrenia complicated by TD in clinical settings.”
More on this study is available here: https://www.sciencedirect.com/science/article/abs/pii/S1388245724002062
Advocacy Update: Upcoming roundtables, townhall regarding Austedo and Vraylar price negotiations
In January of 2025, the Center for Medicare and Medicaid Services (CMS) listed 15 drugs up for price negotiations, two of which are vital to the movement disorder community. The two drugs are deutetrabenazine, known by its brand name, Austedo, (and Austedo XR), an FDA-approved treatment for both tardive dyskinesia and Huntington’s Chorea. The second medication on the list is cariprazine, or Vraylar, which treats major depressive disorder, a common comorbidity for movement disorders.
While the aim of the Medicare drug price negotiation program is to lower the cost of our prescriptions, research has shown that price negotiations can cause a slowing of new drug development and innovation, which could lead to fewer treatments in a sphere where they are limited to start with. While price negotiations could reduce patient copays and government costs, they could also possibly reduce patient access via formulary changes, prior authorizations, step therapy requirements and non-medical drug switching, which could negatively impact patient outcomes.
In order to gather feedback regarding these important developments, CMS is holding several events including roundtables and townhalls to gather public input on these issues. Patients, care partners and patient advocacy organizations can register here to speak at roundtables. The Austedo roundtable will take place on April 16 from 10:00am-11:30am ET; the Vraylar roundtable will be on April 28 from 11:00am-12:30pm ET. Optional discussion topics include patients’ day-to-day experiences, the drug’s positive impact, and the outcomes patients care about most. Patient-centered roundtables will not be live-streamed, and transcripts will be redacted to omit names and other identifying information.
Clinicians, researchers and others from the public may also register to participate in a clinically oriented virtual and livestreamed town hall to be held Wed., April 30. To provide input at the town hall, register here. The town hall seeks to evaluate input regarding clinical experience prescribing and/or managing treatment, how the drug compares to other treatments in terms of therapeutic advancements, and how the treatment addresses the unmet medical need. Registration for the roundtables and town hall both end at 11:59pm PT on Wed., March 12.
Webinar: Navigating the Inflation Reduction Act 2025: What it Means for Movement Disorder Patients and Advocates
Watch this webinar from the Movement Disorders Policy Coalition and Alliance for Patient Access about the Medicare drug price negotiations, their possible impact on those living with movement disorders and mental health conditions, and opportunities for patients, caregivers, clinicians, and others to weigh in.
The Inflation Reduction Act (IRA), passed in 2022, gave the Centers for Medicare and Medicaid Services (CMS) unprecedented authority to negotiate drug prices in Medicare Part D, with the goal of lowering the costs of prescription medications both for patients and the federal government. In January 2025, CMS announced their second round of drugs up for price negotiations. These fifteen drugs included two treatments critical to the movement disorder community. Selected treatments include deutetrabenazine (Austedo® and Austedo XR®), which treats tardive dyskinesia and Huntington’s Disease, and cariprazine, (Vraylar®), a treatment for mental health conditions such as bipolar disorder and major depressive disorder, both of which are common comorbidities for movement disorders.
The webinar explains how the Medicare drug price negotiations may have unintended consequences, including, but not limited to, reduced research and innovation on the part of pharmaceutical companies, and decreased patient access to life-changing treatments for movement disorders and mental health conditions. CMS wants to hear from all stakeholders, including patients, caregivers, clinicians, researchers, and concerned public citizens as to why Austedo and Vraylar are important treatment options. CMS has set up a portal which is open to public comment until March 1st. The webinar offers step-by-step instructions on how to access and navigate the portal through a valid email account and comes complete with an advocacy toolkit with hashtags to help us amplify our voices on social media.
Although the public comment portal closes at midnight on March 1st, in the following months, there will be opportunities for patients to tell their story and/or participate in virtual town hall meetings. NOTD will give you those details just as soon as they’re available.
To watch the MDPC/PAN webinar visit: https://www.youtube.com/watch?v=3lywccZaAhI
CMS opens portal for feedback about Austedo and Austedo XR
As part of the price negotiation process that the Center for Medicare and Medicaid Services (CMS) is having for Austedo and Austedo XR, CMS has launched a portal to gather feedback from patients, caregivers, clinicians and researchers.
If you fall into one of these categories and you have experience with using Austedo to treat TD, now is the time to make your voice heard!
Visit the following link to access the system:
Public Submission Form for Information about Selected Drugs and Their Therapeutic Alternatives
The system will email you a link to access the portal where you can provide your input. The survey will close on March 1, 2025. This is the perfect way for you to provide your personal experience to the Federal Government regarding a medicine you have used to treat TD.
As we announced a few weeks ago, Austedo and Austedo XR are one of 15 different brand name medicines that will be negotiated in an effort to derive cost savings for CMS.
Thank you for your participation!
Austedo and Austedo XR to be included in Medicare price negotiations
Medicare has selected fifteen more prescription drugs for price negotiations in the continued effort to lower the prescription drug costs for Medicare Part D beneficiaries. Medications listed for price negotiations include Austedo and Austedo XR, which treat tardive dyskinesia and Huntington’s disease. These negotiations are part of the Inflation Reduction Act; the new negotiated costs will become effective in 2027.
In negotiating prices with participating manufacturers, CMS will consider each medication’s clinical benefit, the extent to which it addresses unmet medical needs, and its impact on specific populations as well as the costs associated with research, development, production, and distribution. The selected drug companies have until February 28, 2025, to decide whether they wish to participate in negotiations.
By participating in the negotiation process, pharmaceutical companies benefit from continued access to Medicare Part D’s vast market as well as helping to improve patient access to life-changing, but costly treatments. Another benefit to program participants is a predictable pricing and reimbursing landscape. This stability allows companies to plan their business strategies more effectively, reducing the uncertainties that come with market fluctuations.
HHS secretary Xavier Becerra had this to say: “Today’s announcement is pivotal—the inflation Reduction Act is lowering prices for people on Medicare. HHS will continue negotiating in the best interest of the people with Medicare to have access to innovative, life-saving treatments at lower costs.”
Starting in February, Medicare will launch a patient portal to gather information from people with the medical conditions involved — TD being one of them. As soon as the portal goes live, count on NOTD to provide the link and additional information as it becomes available.
More information on the Medicare Drug Price Negotiation Program is available at:
New Ingrezza (valbenazine) data on long-term TD outcomes
New analyses from existing data of Neurocrine Bioscience’s phase 3 Kinect-4 study of Ingrezza (valbenazine) capsules demonstrated that nearly all study participants saw clinically significant improvements in TD symptoms by week 48.
“TD is a persistent, debilitating disorder requiring continuous treatment to effectively and sustainably improve symptoms over time,” said Eiry W. Roberts, MD, chief medical officer at Neurocrine Biosciences. “This post-hoc analysis, along with previous long-term analyses, demonstrate the reliable, long-term efficacy and tolerability of one-capsule, once-daily Ingrezza to help inform use of this treatment in clinical practice.
In the phase 3, Kinect-4 study, 163 participants with moderate and severe TD and comorbid schizophrenia, schizoaffective disorder or mood disorder received once-daily Ingrezza for 48 weeks. Dosing began at 40mg/day, which was then raised to 80 mg/day at week 4, based on effectiveness and tolerability. Researchers reduced the dose back to 40 mg/day if participants could not tolerate the 80 mg dose.
Using the Abnormal Involuntary Movement Scale (AIMS), investigators found that participants experienced improvements during long-term treatment with Ingrezza 40 mg/day (-10.2) or Ingrezza 80 mg/day (-11.0). At week four, 55% of participants on the 40 mg/day dose had significant improvement on the AIMS scale, defined as a reduction of at least 2 points. At week 24, approximately 95% percent of the study subjects had this response, and by week 48, 97%. At week 48, 86% of patients had a 50% AIMS improvement, and 52% had at least a 70% AIMS improvement. Reduction of TD symptoms were sustained throughout treatment, with an AIMS mean total score reduction from baseline to week 48 of 10.5.
These findings indicate that while many patients may experience substantial improvement in TD symptoms early in their treatment, others may require longer periods of time to reach full benefit.
Read the full article in Journal of Clinical Psychopharmacology: https://journals.lww.com/psychopharmacology/fulltext/2024/07000/sustained_treatment_response_and_global.4.aspx
Video: Breaking barriers in the effective screening of tardive dyskinesia
Join host Charles Turck PharmD, Dr. Andrew Cutler and Dr. Michelle Scargle as they share valuable insights and information on how to recognize early symptoms of TD. Dr. Cutler is the Clinical Associate Professor in the Department of Psychiatry and Behavioral Sciences at SUNY Upstate Medical University and the Chief Medical Officer of the Neuroscience Education Institute in Carlsbad, California. Dr. Scargle is founder and Chief Psychiatrist at Concord Health in Clearwater, Florida.
Highlights include Scargle’s explanation of the unique counseling techniques she employs to inform patients about the risks of antipsychotics as well as how to inform them to be self-aware of any irregular movements they might experience. For his part, Dr. Cutler shares how close observation of patients during appointments helps him overcome time constraints.
The 15-minute taped interview is sponsored by Teva Pharmaceuticals and presented by ReachMD, one of the nation’s largest peer-to-peer learning platforms for physicians and other healthcare providers. The talk is free, and is available on the ReachMD website: https://reachmd.com/programs/neurofrontiers/breaking-barriers-effective-screening-for-tardive-dyskinesia/26646/ as well as iHeartRadio, iTunes and TuneIn.
Study reveals overprescription of benztropine for tardive dyskinesia
Benztropine, an anticholinergic medication also known as Cogentin®, is prescribed short-term for extrapyramidal symptoms such as drug-induced Parkinsonism and prevention of and treatment for acute dystonic reactions to antipsychotics. However, benztropine is not recommended for tardive dyskinesia and can even worsen the symptoms.
Researchers analyzed a large U.S. medical claims database, identifying over 100,000 patients who began benztropine treatment between 2017-2020 and surveyed 350 healthcare providers about their prescribing habits. Results, published in August 29, 2023 on Psychiatrist.com [1], showed that more than half of the patients used benztropine for longer than the recommended three months, with many taking it for over a year, raising safety concerns, especially among patients with TD and older adults.
The study also found that providers often prescribed benztropine for inappropriate reasons, such as preventing or treating TD, contrary to guidelines from groups like the American Academy of Neurology. Primary care physicians were more likely than psychiatrists to continue long-term and inappropriate use of benztropine. Long-term use of benztropine is associated with adverse events like depression, constipation, and blurred vision, among other side effects. Using benztropine for treating extrapyramidal disorders in psychotic patients may exaggerate psychosis and related behavioral changes. Benztropine is also associated with cognitive impairment and worsening symptoms of dementia, particularly in elderly patients.
This study highlights the need for better education on appropriate benztropine use and adherence to evidence-based guidelines to improve outcomes for vulnerable patients.
For further reading, refer to the following articles and studies:
https://www.ncbi.nlm.nih.gov/books/NBK560633/
https://www.psychiatrist.com/news/the-weekly-mind-reader-overprescribing-benztropine/
[1] Benztropine Usage Patterns in Movement Disorders
NY State TD education and screening bill awaits Governor’s signature
New York State’s public health law has been amended to provide education for healthcare providers about drug-induced movement disorders such as tardive dyskinesia and how to screen for them. The bill also includes public outreach to raise awareness of the importance of early diagnosis and treatment, as well as to reduce the biases and stigma many TD patients face.
The educational materials will be developed and distributed with the help of the American Psychiatric Association and other relevant professional organizations and will include best practices for the screening and treatment of tardive dyskinesia. Early detection and proper treatment of tardive dyskinesia are crucial to easing the physical pain and mental burdens experienced by people with TD. However, national surveys suggest that less than ten percent of patients with TD are receiving treatment. The New York State TD bill would help provide high-quality, patient-centered healthcare as well as reduce the suffering many patients experience resulting from their involuntary movements, which can interfere with activities of daily living, worsen mental health symptoms and even lead to withdrawal from society.
Introduced in April 2024 by Senator Gustavo Rivera (D-New York), the bill was amended and approved by the Senate on June 6th and awaits the signature of Governor Kathy Hochul. Passage of this bill would be landmark legislation on behalf of people suffering from movement disorders related to their psychiatric medications.
Read the text of the bill and download the PDF here: https://legislation.nysenate.gov/pdf/bills/2023/S8965A
Upcoming Changes to Medicare Part D further cap out-of-pocket costs
Starting on 1-1-2025, out-of-pocket expenses for people enrolled in Medicare Part D will be capped at $2,000. “It’s the first time in the history of the Medicare program that people have a cap on how much they could have to pay out of pocket,” said Meena Seshamani, M.D., the director of the federal Center for Medicare, in an interview with AARP.
The $2,000 cap includes deductibles, copayments and coinsurance. 80.4% of those on Medicare are enrolled in Part D. It’s important to know Part D does not include Part B drugs, (such as injections patients get at doctors’ offices), plan premiums, or drugs not covered by your insurance plan (it is estimated that 59% or more of Medicare prescription drug plans now cover VMAT2 inhibitors for TD treatment).
Also starting in 2025, the Medicare Prescription Payment Plan requires all Part D plans to offer enrollees the option of paying out-of-pocket costs in monthly payments instead of all at once at the beginning of the year. This doesn’t reduce the total cost of prescription drugs, but it can help with budgeting. Patients can opt into the plan by contacting their insurance company.
The most notable Part D change in 2025 is the elimination of the ‘donut hole,’ or coverage gap. Instead, plans may have annual deductibles up to $590.00. After meeting these deductibles, patients will have copayments until their total out-of-pocket spending reaches $2000.
With such big changes to Medicare Part D, it’s likely there will also be changes in monthly premiums, copayments and covered drugs. That’s why it’s important for consumers to compare plans during open enrollment (starts on October 15) and find the ones that best meet their health and financial needs.
Read more on the Inflation Reduction Act’s changes to Medicare, and the AARP article.
Breakthrough antipsychotic that promises no TD risk nears finish line for FDA approval
On September 26, 2024, the FDA is scheduled to decide whether a new antipsychotic drug, KarXT®, will become the first of its kind not to block dopamine receptors to treat psychosis. KarXT, developed by Karuna Therapeutics (acquired by Bristol Myers Squibb in March), is one of a handful of antipsychotics that target muscarinic receptors instead. Currently, traditional antipsychotics primarily target D2 receptors to treat psychosis, which can lead to tardive dyskinesia and other side effects that cause almost three-quarters of patients to abandon treatment with them. KarXT reduces dopamine activity in the brain but does so by acting on the M1-M4 muscarinic receptors instead of dopamine receptors.
Researchers have been trying to bring muscarinic-type antipsychotics to market for over forty years but have been stymied by side effects. With recent advances in precision pharmacology and targeting, this looks to be much less of an issue.
If approved, KarXT will be the first new type of antipsychotic on the market in decades. But KarXT has some competition. At last count, at least four other pharmaceutical companies are testing various types of muscarinic receptor drugs, including Neurocrine Biosciences, AbbVie, Terra Biosciences and Neumora Therapeutics Ltd.
If KarXT is approved, it would be indicated for treatment of schizophrenia, which has a dire need for better treatment options. Because demand is high, revenues for schizophrenia drugs could reach $7.11 billion by 2028. However, M1-M4 receptor-targeted antipsychotics will have blockbuster market potential if they become FDA-approved for the treatment of mood disorders as well. A 2022 analysis of 33 studies into the role of muscarinic receptors in depression and bipolar disorder showed muscarinic antagonists to have robust antidepressant effects. While these findings are not definitive, muscarinic receptor interventions hold promise in terms of efficacy, safety and tolerability in the treatment of schizophrenia, mood disorders, and the behavioral and psychiatric symptoms of Alzheimer’s Disease.
With fewer side effects, muscarinic receptor-targeted drugs will likely improve patient adherence and long-term outcomes. This new generation of antipsychotics could mark the end of TD as we know it.
For further reading, refer to the following informative articles and studies:
Golden age of muscarinic acetylcholine receptor modulation in neurological diseases: https://pubmed.ncbi.nlm.nih.gov/39143241/
Overview on new wave of antipsychotics https://www.pharmavoice.com/news/bms-karxt-schizophrenia-approval-abbvie/724512/
Systematic review of 33 studies regarding muscarinic receptor drugs in people with mood disorders: https://pubmed.ncbi.nlm.nih.gov/36269510/
Antipsychotics block dopamine D2 receptors in pancreas, too?
A recent study published in the June 2024 edition of the journal Diabetes from the University of Pittsburgh points to a promising new approach to reducing the risk of diabetes associated with antipsychotic medications.[i] This study builds on previous findings that antipsychotics, in addition to blocking D2 receptors in the brain, block D2 receptors in other parts of the body such as the pancreas. This organ, that produces and secretes hormones such as insulin and glucagon are crucial in balancing blood sugar.
The study presents evidence in support of combining antipsychotics with chemicals that directly counter those effects. This new approach could limit serious metabolic side effects.
“Antipsychotics don’t just stop working below the neck,” said research author Zachary Freyburg, M.D., Ph.D. “Maintaining glucose metabolism requires the brain to be in constant contact with the rest of the body. Next generation antipsychotic drugs can be modified as a new strategy to control dysglycemia [abnormal blood sugar levels] and diabetes.”
Currently, Freyburg and his collaborators are in the early stages of studies to determine whether the therapeutic effects of antipsychotics are preserved when combined with molecules that block peripheral D2 receptors such as those in the pancreas.
Dr. Freyburg concluded, “We hope that our research builds awareness about the importance of communication between the brain and the rest of the body in maintaining physiological functions and reminds clinicians that they should also consider that drugs designed to act on targets in the brain, like psychiatric medications, may also have significant actions outside of the brain…”
View the research abstract, Development of novel tools for dissection of central versus peripheral dopamine D2-like receptor signaling in dysglycemia, and press release.
[This report concludes NOTD’s three-part series on new research into the metabolic effects of antipsychotics.]
[i] Bonifazi, A., Ellenberger, M., Farino, Z. J., Aslanoglou, D., Rais, R., Pereira, S.,Mantilla-Rivas, J. O., Boateng, C. A., Eshleman, A. J., Janowsky, A., Hahn, M.K., Schwartz, G. J., Slusher, B. S., Newman, A. H., & Freyberg, Z. (2024). Development of Novel Tools for Dissection of Central Versus Peripheral Dopamine D2-Like Receptor Signaling in Dysglycemia. Diabetes, 73(9),1411–1425. https://doi.org/10.2337/db24-0175
The Clinician’s Tardive Inventory (CTI): Testing a New Way to Measure TD
The burden tardive dyskinesia (TD) places on the lives of patients, families, and to a certain extent, caregivers, cannot be overstated. The challenge for healthcare providers has been the limitations of currently utilized clinician-rated TD measurement scales such as the well-established AIMS examination.
To address these limitations, a group of researchers developed and tested the Clinician’s Tardive Inventory (CTI), a more comprehensive instrument that measures clinical signs alongside their functional impact on patients’ quality of life. The results were published in the Jan. 2024 issue of Journal of Clinical Psychiatry.[i]
A movement disorder neurologist developed an outline for the new method of measurement. This was followed by a steering committee of five neurologists and two psychiatrists who made multiple revisions with the goal of making the CTI user-friendly for clinicians of various expertise levels and to facilitate documentation of TD exams.
The CTI assesses and rates abnormal movements in various body parts such as the eye, eyelid, face, tongue, mouth, jaw, limbs and trunk as well as more complex movements, and abnormal vocalizations. The CTI also rates frequency of symptoms from 0 to 3 ranging from absent to constant. Functional impact in areas like activities of daily living (ADL), social impairment, symptom distress, and physical harm a re-rated 0 to 3 (ranging from unawareness to severe impact).
Using video recordings of TD examinations, the researchers studied the CTI for reliability and consistency. The new tool showed “fair to excellent” reliability in the rating of both TD symptoms and functional impairment. Test-retest reliability ratings were “fair to very good.”
The study’s conclusion is that the CTI is a promising new tool with proven reliability in assessing clinical signs and functional impact, but challenges remain in the domain of “symptom bother.” Therefore, a further validation study is warranted.
The abstract of the January 2024 Journal of Clinical Psychiatry article is available here: https://pubmed.ncbi.nlm.nih.gov/38270545/
[i] Trosch RM, Comella CL, Caroff SN, Ondo WG, Shillington AC, LaChappelle BJ, Hauser RA, Correll CU, Friedman JH. The Clinician’s Tardive Inventory (CTI): A New Clinical Tool for Documenting and Rating Tardive Dyskinesia. J Clin Psychiatry.2024 Jan 24;85(1):23m14886. doi: 10.4088/JCP.23m14886. PMID: 38270545.
New Coating Added to Antipsychotic Mitigates Weight Gain in Study
5/28/2024—New research from the University of South Australia shows that antipsychotics reformulated with a strategically engineered coating mitigate the unwanted side effect of weight gain. Researchers tested lurasidone (Latuda®), a second-generation antipsychotic, in rodent studies. Using a coating of tiny shell particles made from the dietary fiber inulin, and bioactive medium-chain triglycerides, researchers found the triglycerides to increase drug absorption, while the inulin boosts the diversity, abundance and activity of the gut microbiome to reduce unwanted weight gain.
Although human studies are still needed, researcher Dr. Paul Joyce is optimistic. “Because we are not developing new drugs, rather, reformulating them, the new therapies can be fast-tracked for clinical use, so we could expect them within the next few years rather than the 10-15 years needed for new drug molecules to be approved by regulatory bodies.”
View the Science Daily article.
This is the second installment of NOTD’s coverage of the latest research into antipsychotic-associated high blood sugar, weight gain, and diabetes.
New Ingrezza® Sprinkle granules provide TD treatment for those with difficulty swallowing
On April 30, 2024, Neurocrine Biosciences announced that the Food and Drug Administration (FDA) approved INGREZZA® SPRINKLE (valbenazine) capsules, a new oral granules formulation of INGREZZA for the treatment of adults with Tardive Dyskinesia (TD) and chorea associated with Huntington’s Disease (HD). Ingrezza Sprinkle provides an alternative administration option for those who experience dysphagia (difficulty swallowing) or would prefer not to take a pill.
This is great news for those with TD as TD often causes difficulty swallowing. Like the original formulation of Ingrezza, Ingrezza Sprinkle offers simple once-daily dosing in three effective dosage strengths (40 mg, 60 mg and 80 mg). The contents of the capsules can be easily sprinkled over soft food for oral administration. For more information on the side effects and safety of Ingrezza and Ingrezza Sprinkle, visit: the online Medication Guide.
Antipsychotic-associated weight gain and diabetes: New research offers hope for prevention and treatment
Individuals who take antipsychotics have higher rates of obesity and 2-3 times the risk for diabetes (Holt, 2019). A University of Toronto study has discovered that the root of the problem may lie with how antipsychotics affect the part of the brain that manages glucose metabolism.
Historically, it has been thought that blood sugar from ingestion of foods such as refined carbohydrates were solely controlled by release of the hormone insulin by the pancreas. However, this new research demonstrates that the hypothalamus in the brain is responsible for more than half the regulation of glucose metabolism in the body.
Interviewed in a University of Toronto department of psychiatry newsletter, here’s how Drs. Pereira and Hahn, who led the research team, summed up the results of their study: “Our most important finding is that antipsychotics block the ability of the brain to sense sugar and adjust glucose metabolism in the rest of the body. This may be one mechanism through which antipsychotics cause high blood sugar and diabetes.”
Researchers used a new technology combining biology and tissue analyses with computer science called “bioinformatics” that identified pathways through which antipsychotics interfere with the brain’s ability to detect and regulate glucose.
“We will soon be starting new studies to look at various interventions to prevent the negative effects of antipsychotics on glucose sensing by the brain. We hope that the new interventions we research can be brought to use quickly so that the quality of life and life expectancy of patients taking antipsychotics can improve.”
View the research abstract and full interview online.
This is the first installment of NOTD’s coverage of the latest research into antipsychotic-associated high blood sugar, weight gain and diabetes.
Holt, R. I. G. (2019). Association between antipsychotic medication use and diabetes. Current Diabetes Reports, 19(10), 96. https://doi.org/10.1007/s11892-019-1220-8
TD Advocacy Update: Federal telehealth bill to include guidance on TD screening
We are anticipating that Congress will pass legislation at the end of 2024 to extend COVID-era telehealth benefits for those on Medicare for two more years. While COVID helped revolutionize healthcare by bringing it into most people’s homes, telehealth can make it difficult for practitioners to properly screen for drug-induced movement disorders like TD.
That’s why NOTD has been advocating to Federal law makers that practitioners who care for those taking antipsychotics should receive guidance regarding screening for movement disorders in a telehealth environment. The current bill making its way through Congress includes language explaining the importance of periodic screening for medication-induced movement disorders, best practices for screening for these disorders via telehealth, and clarification regarding how to account for screening in evaluation and management code selection. (Thanks to Neurocrine Biosciences’ Government Affairs Division for their efforts in this regard.)
By including this TD-related education/guidance with the telehealth bill, we will hopefully mitigate the impact that telehealth can have on thorough TD screening and diagnosis.
Integrated AIMS reminders to assist in early detection and treatment of TD
Amalgam Rx, a healthcare tech company, has developed software that embeds AIMS assessment reminders in the electronic health records of patients at risk of developing Tardive Dyskinesia. TD experts generally advise that the Abnormal Involuntary Movement Scale, or AIMS, be given to patients taking antipsychotics and other dopamine-blocking medications every six months and more frequently if at a high risk for TD. Amalgam Rx’s reminder prompt is triggered when patients are seen who need regular AIMS screenings. At present, it is thought the AIMS test is underutilized, and that TD often goes undiagnosed, with approximately 60% of sufferers unaware they have the condition. The Amalgam Rx AIMS reminder tool will aid in early detection and diagnosis for patients. More information is available at: https://amalgamrx.com/aims/ and on-demand webinar
FDA approves new single-tablet strengths of once-daily AUSTEDO® XR
5/30/24 – Following the U.S. Food and Drug Administration’s (FDA) approval of once-daily AUSTEDO XR (deutetrabenazine) extended-release tablets in February 2023, the FDA has approved new single-tablet strengths of AUSTEDO XR. AUSTEDO XR is now available as one pill, once-daily across a range of effective doses: 24, 30, 36, 42, 48 mg/day tablet strengths offering flexibility to tailor individual treatment regimens for effective and tolerable TD and HD chorea symptom control. In addition, AUSTEDO XR can be taken with or without food. For more information on side effects and safety of the XR and standard AUSTEDO drugs, visit: Medication Guide.
New antipsychotic that doesn’t block dopamine receptors could be approved this September
KarXT (xanomeline-trospium) is a new antipsychotic drug in Phase 3 testing that acts on the muscarinic receptors instead of directly blocking dopamine receptors. For those concerned with developing TD, this is good news because the central theory of TD development entails blocking of the D2 dopamine receptors. KarXT still decreases dopamine availability in the brain by activating muscarinic receptors instead. If KarXT is approved by the FDA it would be the first antipsychotic since their first use in the 1950s (in the U.S.) that wouldn’t act by blocking dopamine receptors which can cause involuntary movements. KarXT is being developed by Karuna Therapeutics and is scheduled for an FDA decision on September 26, 2024.
Teva Pharmaceuticals presents first real-world data from IMPACT-TD Study at Psych Congress Elevate 2024
An interim analysis of 286 patients with varying levels of TD severity reported that TD has a multidimensional impact, even on patients with mild TD. Clinician-reported IMPACT-TD findings show: “98% of patients experience the impact of TD in some aspect of their quality of life; 83% of patients experience moderate to severe impact across various quality of life domains, including social (59%), psychological/psychiatric (70%), physical (53%) and vocational/ educational/recreational (57%); 54% and 61% of patients with “very mild” and “mild” TD severity based on CGIS-TD (Clinical Global Impression of Severity of TD), experience moderate to severe impact on their quality of life. Review more key findings from this important ongoing study.
NOTD joins forces with NAMI Citrus County for in-person TD lecture/screening event
Bill Cote, Sr. Director of NOTD, provided a TD Talk to members of the National Alliance of Mental Illness (NAMI), Citrus County, FL on May 14 from 7pm-8pm. The event was held at the county’s local YMCA and included in-person screenings for attendees by psychiatric nurse practitioner Andrew Wargo PMHNP-BC of Concord Health based in Clearwater, FL.
House of Representatives Commemorate Tardive Dyskinesia Awareness Week
Washington, D.C. – Representatives Scott Peters (CA-50), Gus Bilirakis (FL-12), Kevin Mullin (CA-15), and Aaron Bean (FL-4), introduced a resolution in the U.S. House of Representatives to commemorate May 5-11 as Tardive Dyskinesia Awareness Week. Tardive Dyskinesia (TD) is a persistent and potentially disabling involuntary movement disorder that is associated with taking certain medications prescribed to primarily treat mental illnesses. TD affects approximately 750,000 people in the United States, and approximately 65 percent of people with TD have not been diagnosed, making it important to raise awareness about its symptoms.
TD Awareness Week! May 5-11
The 7th annual Tardive Dyskinesia Awareness Week (May 5-11, 2024) is now recognized by all 50 states and the District of Columbia. You can do your part to raise awareness by using the hashtags #Screen4TD #TDAwareness or #TDAwarenessWeek with your social media posts about TD during the first week of May.
Our 3rd trip to Capitol Hill!
On May 2, we visited Washington, D.C. for our third annual Capitol Hill fly in ahead of Tardive Dyskinesia Awareness Week. People living with tardive dyskinesia (TD) and their care partners shared stories with Congressional and Senate offices and their staff about how TD, an involuntary movement disorder associated with use of antipsychotics or anti-nausea drugs, has impacted their lives.
Exhibited at Psych Congress’ NP Institute in San Diego (March 20-22, 2024)
We had a very productive and educational time at Psych Congress’ NP Institute in San Diego. We met some caring, passionate psychiatric nurse practitioners who were very interested in how we can support their TD patients! NOTD also debuted “Shake, Rattle, and Rock: Helping Children Understand the Challenges of Having a Loved One with Tardive Dyskinesia.”
A huge thank you to our Creative Director, Ruth Ann Rich. She and her son were the driving force behind the creative story for our soon to be released children’s book. We hope this book will help kids understand their loved one’s TD and to especially know that they are not alone. Many children have parents, grandparents and other loved ones with TD.
Kathleen A. Shea’s memoir, “Catastrophic Withdrawal,” describing how rapid quetiapine reduction dramatically altered her life is available in Kindle and paperback versions. While she is best known for starting NOTD, tardive dyskinesia is only part of her story. Her book has been read by individuals from the U.S., Canada, UK, Ireland, Italy, France, Germany, Japan, Israel, Greece, Malaysia, the Philippines, Australia, and New Zealand.
We will be traveling to San Francisco for the annual meeting of the American Psychiatric Association. We will be raising awareness with psychiatric practitioners of the real impact TD has on their patients and the support NOTD can provide their patients with TD. If you’re a healthcare provider and will be attending, please stop by our Booth #2066 (near the Neurocrine Biosciences and Teva Pharmaceuticals exhibits). Hope to see you there!
TD Awareness Week! May 1-7
The 6th annual Tardive Dyskinesia Awareness Week (May 1-7, 2023) is now recognized by all 50 states and the District of Columbia. You can do your part to raise awareness by using the hashtags #TDAwareness or #TDAwarenessWeek with your social media posts about TD during the first week of May.
Our 2nd trip to Capitol Hill!
On April 26th, we visited Washington, D.C. for our second annual Congressional fly in. People living with tardive dyskinesia (TD) and their care partners shared stories with 15 Congressional offices and their staff about how TD, an involuntary movement disorder associated with use of antipsychotics or anti-nausea drugs, has impacted their lives.
We’ll be returning to Washington, DC to advocate for TD!
NOTD will travel to Washington, D.C., the last week of April to raise awareness regarding TD. This year we will be bringing 7 people with TD and their caregivers to share their stories about how TD has impacted multiple aspects of their lives.
NOTD’s 3rd Birthday!
October 30, 2022 was our birthday! Thank you for all your support as we advocate, educate and raise awareness of this debilitating, medication-induced movement disorder. If you’d like to see highlights of the past 3 years, visit: facebook.com/TDHelp
NOTD Exhibits at NEI Congress
To raise awareness of TD and NOTD’s mission, we exhibited at the Neuroscience Education Institute (NEI) Congress in Colorado Springs from Nov. 3-6. We had the opportunity to interact with a number of psychiatrists and movement disorder specialists very interested in helping those with TD.
NOTD Exhibits at AAPA Annual Conference
From May 21-23, 2022, the National Organization for Tardive Dyskinesia exhibited at the American Academy of Physicians Associates Conference in Indianapolis. This meeting was attended by 2,900 Physician Assistants/Associates and PA students. Mental health was a predominant theme of the conference — the opening session featured Jane Pauley and gymnast Simone Biles who shared their inspiring stories of overcoming mental challenges and reducing the stigma associated with mental illness.
TD Symptom Tracker App
NOTD is proud to announce that our one-of-a-kind smartphone app to track TD Symptoms is now available in the Apple App Store (for iPhone, iPad) and the Google Play store (for Android). This app makes it easy to record your involuntary movements and chart the progress of any TD treatments. You can also keep track of sleep, stress and even caffeine intake so you can monitor the effect of TD triggers.
It’s HIPAA compliant and encrypted so you can feel confident that your data is secure. To download it now, visit the Apple App Store or Google Play Store.
“Treatment of Tardive Syndromes” webinar
We invite you to learn about your options for managing TD. The highly-accredited Dr. Stewart Factor, Director of the Movement Disorders Clinic at Emory University (with a passion for tardive syndromes research) discussed medication, over-the-counter remedies and surgical options to reduce the unintentional, uncontrollable movements of TD. View our webinar here!
TD Medical Cards
These are helpful when traveling or anytime you are in a situation where your movements may be questioned. If you would like a plastic card indicating that you have TD and describing TD for your wallet, or a lanyard plus a card to conveniently display it, please email us at info@tdhelp.org with the subject line “TD Card/Lanyard”. Include your name and address in the email and it will be mailed to you, free of charge. (To see a picture of the eye-catching card, visit: https://tdhelp.org/resources/ and scroll about 3/4 of the way down the page.)