TD News

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.”

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. 

TD Support Group with Special Guest (12/13, 11am-12pm)
NOTD is proud to host Michelle Scargle, M.D., a very special psychiatrist with a passion for helping those with TD. Limited spaces available – register now! https://www.signupgenius.com/…/10C094BADAA29A7FAC25… 
 
October 30th, 2023 is our 4th birthday!
A lot has happened since the time we launched NOTD. Who would have dreamed we would have assisted so many people in so many ways during this time? Take a look back at some of our many accomplishments over the past four years.
 
Read our Founder’s shocking memoir about antipsychotic withdrawal…

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. 

Visit us at Psych Congress in Nashville (Sept. 7-9)!
NOTD will be exhibiting at booth #722 at Psych Congress in Nashville this September. We will be sharing information to psychiatrists about our TD support groups, our upcoming TD children’s book, and demonstrating other resources such as our TD Symptom Tracker smartphone app. If you’re planning on attending the conference, please stop by and introduce yourself!
 
TD Workshop: What Is It and What Should You Know?
We will be offering a (free) TD workshop Saturday, Aug. 12th, 1-2:30pm ET with the Depression and Bipolar Support Alliance (DBSA) of California. #TardiveDyskinesia
 
NOTD to Exhibit at APA (May 20-24)
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.)