React19 - Official

“There is no ICD-10 code… no clinical definition… no recognition of these diseases.” This week, the CDC’s ACIP, vaccine advisory committee, was scheduled to formally address COVID vaccine injuries for the first time. A federal judge stopped that from happening. So the Why Should I Trust You? podcast held the conversation ACIP never got to have. Dr. Akiko Iwasaki, a Yale immunologist, is studying post-vaccine syndrome. She made one thing clear: these patients are real, their suffering is real, and that the medical system needs changes in order to track what they are experiencing. She also shared how difficult it has been to publish research in this space, despite publishing similar-quality work in other areas without issue. We stand with researchers willing to ask hard questions and with the patients still waiting for answers. Full episode: podcasts.apple.com/us/podcast/aci…

This week’s cancellation of the CDC’s ACIP meeting halted what would have been the first-ever federal review of COVID vaccine injuries at the CDC. Judge Brian Murphy blocked ACIP and all corresponding meetings because the meetings and recommended policies were causing harm to Americans. For the COVID vaccine injured, the harm didn’t come from ACIP's proceedings, it came from stopping them. Stephanie and Maddie de Garay, was selected to speak during the public comment period at this week's meeting. Maddie had entered a clinical trial at 12 years old. Now 17, she remains severely ill and in need of medical recognition, answers and care. With the meeting cancelled, her long overdue review of her complicated case will not be heard. How long are patients expected to wait for help?

What's the code? T50.B25x Adverse effect of COVID-19 vaccines Why do patients need a specific code for COVID-19 vaccines? Without a specific code, patients are often misclassified or dismissed. A code creates a shared language, so providers can document, study, and treat these conditions consistently. (according to AI) The WHO already has a code for COVID-19 vaccines, then why does this need to be made? The US did not implement the WHO's code. There is no such code available for the USA. Why does the wording of the code matter? Language matters. It must be medically accurate, neutral, and usable by doctors across perspectives, so patients aren’t dismissed before care even begins. How would a code help patients in real life? It enables documentation → recognition → appropriate workup → potential treatment. Right now, many patients are stuck at step one. (vaccine reactions are an immune mediated medical issue that needs a specific type of diagnostic workup, and even more specific treatment.) ** Treating idiopathic small fiber neurpathy is very different than immune-mediated (possibly vaccine derived) small fiber neuropathy. Is this about being “for” or “against” vaccines? No. This is about patient care. Supporting those who experience adverse outcomes strengthens, not weakens, public health systems. What happens next? The proposal will be posted by the CDC in a couple more days. When will this code go into effect? in 2027.

A setback and a breakthrough. While this week brought unexpected challenges, progress continued. Today, March 18th, REACT19 advanced a proposal to the CDC’s National Center for Health Statistics for a dedicated ICD-10 code to identify adverse effects of COVID-19 vaccines. The proposal has now been approved to move forward in the formal review process. Submitted by Joel Wallskog, this marks an important step toward clinical recognition, accurate documentation, and future research. The proposal will now enter a 60-day public comment period, with the potential for inclusion in the U.S. system as early as 2027. Stay tuned for more information regarding comment submissions.

Before 2021, William Hoffmann was active and outdoors. He had been a runner in his younger years and continued training at the gym into his 60s. After contracting COVID early in the pandemic and later receiving two Pfizer vaccinations, he began experiencing persistent shortness of breath. Simple movements caused him dizziness, fainting, and pain. William found no answers through testing and began to accept this as his new normal… Then he connected with React19. “For the first time in 4 years, I feel hopeful.” Stories like William’s remind us why advocacy, research, and patient support matter. Read William’s story: react19.org/testimonials/i… Help us continue providing advocacy, research, and direct support to families in need. react19.org/donate

The Board of REACT19 regrets to inform our community of the sudden cancellation of this week’s meeting of the Advisory Committee on Immunization Practices (ACIP) at the CDC. The meeting was cancelled following a federal court ruling that blocked recent vaccine policy changes and invalidated the current ACIP advisory panel while legal challenges move forward. For many in our community, this meeting represented a long-awaited opportunity. After more than five years of waiting, patients and families had prepared impact statements in hopes that the urgent need for clinical recognition, research, and care for those suffering from serious post-vaccination conditions would finally be discussed. For those living with these conditions, this cancellation is deeply painful. It means more waiting, more uncertainty, and more time without the clinical guidance needed to help physicians recognize, diagnose, and treat patients who have been suffering for years. Our hearts are with every member of this community who had hoped their voice would finally be heard this week. However, even in this difficult moment, important progress continues. On March 18, REACT19 will still be part of a historic step forward at the CDC. A proposal for a new ICD-10 diagnostic code related to post-COVID-19 vaccination conditions will be presented, opening a public comment period and moving the medical system closer to formally recognizing these patients. Diagnostic codes are more than administrative tools. They are a critical foundation for clinical recognition, medical education, research, insurance coverage, and ultimately the development of treatments. Establishing an ICD-10 code would represent an important step toward building the clinical infrastructure needed to care for patients who have too often been left without answers. While the cancellation of the ACIP meeting is a heartbreaking setback for our community, the work to achieve medical recognition and appropriate care continues. If the U.S. Department of Health and Human Services prevails in its appeal, the ACIP process may resume. In the meantime, REACT19 remains committed to ensuring that the voices of patients are heard and that progress toward recognition, research, and care does not stop. To every patient and family who has shared their story and stood with us through years of uncertainty: we see you, we hear you, and we will continue advocating for the care and recognition you deserve. — Board of Directors REACT19

Policy decisions are often framed in charts and data. But behind every data point is a human life. ACIP reviewing COVID vaccine injury is an important reminder that policies should consider lived experiences alongside clinical evidence. Acknowledgment does not undermine science, it completes it. #WeDoExist #HealthPolicy #ACIP #PatientCentered

Today is Long COVID Awareness Day. Millions of people around the world are still living with the lasting effects of COVID-19, including fatigue, brain fog, chronic pain, and many other symptoms that can persist long after the initial infection. Long COVID and COVID vaccine injury are both very real, just two different triggers: COVID infection vs. COVID vaccination. Everyone affected deserves to be heard, supported, and studied so that effective treatments and solutions can be found. Today we stand with patients, families, caregivers, and researchers working toward better treatments and answers.

What do you say to someone who has lost hope? Ernest Ramirez says the hardest moments come when you feel completely alone. That is when the weight of everything can feel unbearable. But he believes no one should have to stand alone. Real change does not happen through one voice. It happens when people stand side by side, supporting each other and refusing to give up. When people come together, he says, we can move mountains. Watch more from this conversation with Ernest: react19.org/videos-and-pod… Tag someone who has stood beside you when you needed it most. Follow Ernest: @rgvrunner01

Behind every statistic is a story. Have you or someone you love experienced an adverse drug event? Your story matters. By sharing lived experiences, we: -Elevate patient voices -Encourage transparency -Push for safer systems As part of National ADE Awareness Day (March 24), you can: -Submit your personal or organizational story at thirdcause.org -Register a local event to recognize the day -Access and share the ADE Awareness Day social media toolkit Let’s bring attention to this critical public health issue.

Last year, Michael Locke was a guest on the React19 podcast, where he shared his personal vaccine injury story. Recently, he posted an update, offering new insights from everything he has learned over the past year. In his latest video, Michael shares this valuable information in hopes of helping others avoid the struggles he faced and possibly providing answers for those who might be facing similar challenges. youtu.be/q-ZUQUvMUKo?si…