House Health & Human Services [Mar 25, 2026]

Representative LeBaron.

Bradley. Excuse.

Have you switched? Bradley is excused.

Here.

Excuse. Leader. Excuse. Madam Chair. Here. Okay. Welcome, everyone. We are going to hear the sunset review of the Colorado Podiatry Board first today, and then Senate Bill 31, Senate Bill 77, and then 1249 for action only, in that order. And we are going to have witness testimony at 2 minutes and 10 minute panels, as we have in the last couple hearings. We look forward to the discussion today. With that, we'll move to our first bill, which is the introduction of the Sunset Podiatry Board. Our first sunset review today is for the podiatry board. The sunset hearing concerning the continuation of the regulatory program is held in accordance with the Colorado Revised Statute Section 2434-1046. The purpose of this hearing is to determine whether there is a public need for the continued existence of the regulatory program and if its regulation is the least restrictive regulation consistent with the public interest. This determination is based on the factors specified in Section 2434-1046B, Colorado Revised Statutes. With that, we'll turn it over to Dora to explain and walk us through the sunset report. Please introduce yourself and please proceed.

Thank you, Ms. Lockwood. Any questions from the committee? Okay. Seeing none, thank you so much. We will move on to our witness phase. Looks like we have two folks here for questions only, Dr. Anna Weber and Sarah Werner. If you'd like to come forward. Wonderful. You're providing testimony as well, right? Okay, great. So if you could introduce yourself, the agency you represent, because you're here for questions only, go right ahead.

Okay, please proceed to state your name, the organization you represent, and you have two minutes.

Thank you so much. Any questions from the committee? Okay, seeing none, thank you so much for your testimony. I appreciate you being here today.

Okay, are there any other folks online or in the room that would like to testify today? Okay, seeing none, the witness testimony is closed. Okay, at this point, we'll entertain a motion to introduce the draft bill, but before we do that, are there any amendments?

Thank you, Madam Chair. I move Amendment 1 to, do you want me to say the number? The draft bill.

Second.

Representative Stewart, would you like to describe the amendment?

Okay. Any questions about this amendment?

Mr. Chadoon, could you please call the roll?

No.

Yes.

Yes.

No.

Yes.

Yes.

No.

I meant yes.

Sorry, I meant yes.

Yes.

Yes.

Yes.

No.

Yes.

Thank you, Madam Chair. I move to introduce the podiatry. Oh. I'm sorry, Madam Chair, members of the committee, Brita Darling, the Office of Legislative Legal Services. I did note in preparing this amendment that I did not amend the title of the bill, which would no longer be correct with the amendment. So I don't know if that's something we want to vote on. I mean, I have come up with what could be the new title, but you won't be adopting the regulations to place the agency under the medical board. on the draft bill.

Thank you. Thank you. . Thank you. Thank you.

Rep. Stewart. Thank you, Madam Chair. I withdraw my partially made motion. Thank you.

They are prompt. Thank you so much.

Representatives. Camacho. Thank you, Madam Chair and members of the House Health Committee. It's nice to be back in front of you again for this session. Today, Rep. Sopro and I are presenting Senate Bill 31, a forward-looking measure to ensure Colorado patients can access safe, effective, and innovative treatments as soon as they are approved at the federal level. At its core, this bill addresses a gap in a state law that could delay access to new prescription medications, particularly those that contain substances currently classified as Schedule I under federal law. but they are actively being studied and developed for legitimate medical use. Senate Bill 31 does three things. First, it creates a narrow exception in Colorado law for prescription drug products that contain a Schedule I controlled substance, but only after that drug has gone through the full federal approval process. This means it must be approved by the FDA for prescription use, demonstrate safety and efficacy through rigorous clinical trials. Second, the bill requires that the Drug Enforcement Administration reschedule or otherwise designate the substance for medical use following FDA approval. This ensures that no product becomes available in Colorado unless federal regulators have formally recognized its medical value. And third, once the rescheduling occurs, the bill aligns Colorado law with federal law so the medication is regulated in the same way here as it is nationwide. This creates clarity, consistency, and efficiency for providers, pharmacists, and patients. The issue this bill seeks to address is both urgent and growing. Colorado is in the midst of a mental health crisis. Roughly one in four adults in our state struggle with mental health issues, and many individuals living with conditions like PTSD, major depressive disorder, and anxiety are not finding relief with existing treatments. Major mental health conditions are especially prevalent in our veteran and active military community, ensuring effective treatments are accessible and deeply, and this issue is deeply personal to me. As I have seen struggles in the airmen in my units that I have commanded firsthand, I find it frustrating that many veterans have to leave the country to try treatments that may ease their mental health conditions. Promising new therapies, some of which involve substances currently listed as Schedule 1, are moving through the federal pipeline. Colorado should ensure that they are available as soon as possible following federal approval. Without this bill, Colorado law could lag behind federal approval, creating unnecessary delays for patients who are seeking relief and for providers who want to offer the most effective evidence-based care. Senate Bill 31 ensures that when the federal government determines the medication is safe, effective, and appropriate for medical use, Colorado is ready. This is about preparedness, it's about aligning with science, and most importantly, it's about giving Coloradans access to new, potentially life-changing treatments when they need them. I respectfully ask for your support for Senate Bill 31.

Thank you, Madam Chair and members of the committee. It's great to be back before you. That was an excellent description of what Senate Bill 31 does. just to dive in a little bit deeper we're amongst a handful of states that doesn't do this already and what ends up happening is when a drug or schedule one drug has been approved by the FDA and the DEA for prescription use then there'd have to be implementing legislation at the state level and so each individual pharmaceutical would have to come to our state and a bill would have to be introduced This is inefficient It certainly is not fair to the marketplace but we have seen from other states that the method laid out in Senate Bill 31 is very effective Also the legislature last year passed House Bill 1063 which was similar legislation but limited only to psilocybin in the Schedule I space This would level the playing field by looking at all Schedule I drugs, but what's most important is they have been approved by both the FDA and the DEA for prescription use only. And with that, we'd open it up for questions.

Representative Bradfield. Thank you, Madam Chair. Could you give me several examples of medications that this bill would approve for prescriptive?

Yes, thank you, Madam Chair, and thank you, Representative Bradfield. It's an excellent question. I am looking for my notes on exactly a few examples. What I can say is, even though I can't find an exact name of a pharmaceutical, a lot are in the mental health space. And so a lot of our mental health drugs that could be used here in Colorado are on that Schedule I list. And so when they have gone through the process, and it's kind of a lengthy process. So first you have the discovery and development of a use of this Schedule I drug. Then there's the preclinical research that has to take effect to actually see whether or not it would withstand trials. Then it moves to a clinical trial phase. And then if that proves successful, then it moves on to the FDA review phase. And this can take years to review. After the FDA review phase, then it moves over to the Drug Enforcement Agency and the Attorney General, and they will review as to whether or not all this research and data passes muster. And if they give it the green light, then if our bill is passed, it would allow those pharmaceuticals to be used for prescription use. Almost all of them will be in clinic administration. So they would be administered to the patient in the clinic with the provider present. So there's a lot of safety there. And then in this process, there's always post-market safety monitoring. So knowing that these are powerful pharmaceuticals, making sure that once they've been introduced to the market, that we're constantly reviewing which patients and their outcomes, and have they been successful, because that's also important. So a lot, to answer your question, are in the mental health space, even though I can't find an exact name of a pharmaceutical.

Thank you. Madam Chair, I think an example might be MDMA, maybe, or LSD. I see some nodding from the sponsors.

That is correct. Thank you. I also wanted to note that Representative McCormick has joined us.

All right Thank you so much Yeah my name is Dr Andrew Novick I a board psychiatrist and assistant professor of psychiatry at the University of Colorado School of Medicine While I cannot speak on behalf of the School of Medicine, I appreciate the opportunity to have a voice here today as a physician as well as a resident of our state. For the majority of my adult life, I've dedicated myself to advancing mental health care. I have degrees in pharmacology, medicine, and biomedical sciences, and have received advanced clinical and research training in psychiatry. At the School of Medicine, I specialize in women's behavioral health, as well as the evaluation of novel therapeutics for mood disorders, including psychedelic compounds. Starting in 2022, I began developing the infrastructure at the School of Medicine to conduct research on psychedelics as well as treat patients with the FDA-approved drug esketamine. To my knowledge, I'm one of only a handful of physicians in Colorado authorized by both the FDA and the DEA to conduct human research with psychedelic drugs. We're living in an unusually exciting moment for psychiatric medicine. Up until recently, pharmaceutical companies in the psychiatric space focused primarily on replicating or modestly tweaking medications that were originally developed in the 1950s. This stasis and innovation has been frustrating to patients and physicians alike and is one of the many factors that conspired to create the present mental health crisis. However, we now have an entirely different set of medications progressing through the FDA pipeline. These treatments hold real promise for individuals with severe mental illness, particularly those who have not responded to existing therapies. Many of the medications currently being investigated were placed into Schedule I by the Drug Enforcement Administration decades ago, long before rigorous modern research demonstrated their therapeutic potential. Under federal law, Schedule I substances are defined as having no accepted medical use and therefore cannot be administered in any clinical setting outside of an authorized research protocol. For this to change, a drug must go through complete FDA approval in which studies have demonstrated safety and efficacy. Subsequently, the DEA within the Department of Justice will be required to work with the FDA to move them out of Schedule I and into a more appropriate controlled substance category. But even once this happens, before physicians like myself can begin administering these drugs, each state must ensure that its own regulations mirrors federal changes. SB 31 addresses this issue. It ensures that when a psychedelic compound is approved and federally rescheduled, Colorado will automatically follow, removing that compound from the state's schedule.

Thank you, and good afternoon, Chair and members of the committee. My name is Ashley Perales, and I'm here today on behalf of Mental Health Colorado and also as a person with lived experience navigating mental health care in our state. Mental Health Colorado supports Senate Bill 31 because it's a common sense bill that ensures Coloradans can access medications without unnecessary state-level barriers. When the science is clear, the federal government has acted, and safety standards are in place, Colorado shouldn't lag behind. This bill simply says that when a medication is approved by the FDA and rescheduled by the DEA, Colorado will treat it the same way without delay. That alignment matters. Delays or inconsistencies in scheduling don't just create administrative confusion, they create real-world harm by slowing access to care. It can be extremely exhausting and discouraging to navigate a system where effective treatment options exist, but access is delayed by policy. When you're struggling, time matters. Every extra hurdle sends the message that relief is conditional or worse, out of reach. Senate Bill 31 respects patients, providers, and the medical process. It trusts evidence and recognizes federal review standards. Costs. Colorado has been a leader in modernizing our behavioral health system. This bill continues that leadership by removing outdated barriers to care. On behalf of Mental Health Colorado, and as someone who knows how critical timely access to care can be, I urge you to vote yes on Senate Bill 26-31. Thank you for your time and consideration.

Thank you. Madam Chair and members of the committee, thank you for the opportunity to speak. My name is Gretchen Schaub, and I'm the Senior Director of Government Affairs and Patient Advocacy for Diffinium Therapeutics, one of the eight companies that are in late-stage clinical trials with one of the compounds that are under discussion. I'm here today to address why SB 31 is a necessary and narrow modernization of existing state law. The bill ensures systems readiness and patient access to breakthrough therapies once they have cleared the rigorous FDA approval process and subsequent DEA rescheduling. We are currently facing a mental health crisis. Mental illness costs the U.S. over $282 billion each year, and suicide remains a leading cause of death, particularly among our veterans. One life is lost to suicide every 11 minutes. After decades without new options, significant medical innovations in psychiatry are finally emerging. Timing matters. Before a medication reaches a patient, it must demonstrate safety and efficacy through extensive clinical trials and additionally satisfy federal risk mitigation strategies. Following FDA approval, the DEA must determine the appropriate rescheduling for that product based on medical use and abuse potential. These are two independent, robust federal safeguards. Inconsistent scheduling frameworks create unintended barriers. Colorado is one of a third of states that currently has this in place. Without the alignment made possible by SB 31, a medication could remain inaccessible for months or years while the state completes a separate legislative process. This creates uncertainty for licensed practitioners and continued suffering for patients. This bill does not provide blanket difference to the federal government or broad legalization, nor does it bypass state oversight or remove state control.

Representative Bradfield.

Thank you, Madam Chair. I was just going to have you answer, actually, Representative Bradfield's question from earlier about specific examples of the types of drugs or substances that might be considered.

So we have currently there are eight companies who have been designated breakthrough therapy designation by the FDA looking at different variations of psilocybin, DMT, 5-MeO-DMT, MDMA, and LSD.

Or is it done, is it administered with supervision?

Additional questions from the committee? Okay, seeing none, thank you so much for your time. We really appreciate your participation today. Thank you. Okay, anyone else online or in person that would like to testify today? Okay, seeing none, the witness phase is closed. Sponsors, would you like to come back up? It looks like there's some amendments. are you okay to proceed with that

hold on one sec while we get everything passed out Okay, Vice Chair Leader, would you like to move the amendment?

Representative Frey, was that Frey?

Representative Kubatia, would you like to explain the amendment?

Thank you, Representative Camacho. Any questions on this amendment? Any objections to this amendment? Okay, seeing none, L003 passes. Okay, Vice Chair Leader, would you like to move a second amendment?

Representative for a second. Representative Camacho, would you like to explain the amendment?

Okay, seeing none, L004 passes. Okay, Representative Camacho, would you like to wrap up?

No.

Okay, seeing none, the amendment phase is closed. Now, Representative Camacho, would you like to wrap up?

Representative Soper.

Thank you, sponsors. Vice Chair Leader, would you like to move the bill?

Representative Barone seconds. Okay, any final comments from the committee?

Additional comments?

Thank you, Spencer, so much for bringing this bill and for – did you have a final comment?

All right. Thank you, Madam Chair.

Representative Johnson. Thank you, Madam Chair. Just echoing, yeah, if we're going to say that Colorado is recognizing mental health as important as physical health, this is a good step to show that. It also does recognize patient-first steps, that there's nothing in this that forces them. It just gives them another option. So I appreciate the approach and I'll be a yes.

Mr. Shadoon, please call the roll. Representative Zabron.

Redfield.

Bradley. Yes. English. Yes. Ray. Yes. Hamrick. Excuse. Pass. Smile. Johnson. Oh, gosh. Pass. Pass. McCormick. Yes. Wrighton. Yes. Stewart. Yes. Wook. Yes. Representative Hamrick.

Johnson

Leader

Adam Chair

passes unanimously 13-0

Should be. Motion. Kay Stewart. Katie Stewart. Representative Katie Stewart. Thank you, Madam Chair. Thank you committee members and to my co-prime. This bill is about addressing a serious and common brain disorder that can be life-threatening. There are approximately 60,000 people living with epilepsy in Colorado and people with epilepsy have a three times higher risk of premature mortality than the general population. Annually one in 1,000 people living with epilepsy, and one in every 150 people with controlled epilepsy will die. These numbers are likely underestimated. The cause is, I don't know what that acronym is, but the cause of the sudden epileptic death can sometimes be unknown, and we lack the appropriate recording data and research to describe and understand the problem and the appropriate interventions to consistently prevent this tragedy. And now I'd like to hand it over to my co-prime. Representative Gilchrist. Thank you, Madam Chair. I am proud to present this bill with my co-prime, Representative Stewart, and excited to tell you a little bit about this, more about what we're trying to solve, as Rep. Stewart mentioned, and the solution that we bring today. For families who lose a child or a loved one to epilepsy, the grief is compounded by something even harder, unanswered questions. Too often they're left without a clear explanation of what happened, and this bill is a step towards changing that. This legislation will standardize how epilepsy-related deaths are investigated by requiring coroners, medical examiners, and forensic professionals to stay current with the latest medical guidelines and best practices, including recognizing SUDEP, which is the Sudden Unexpected Death in Epilepsy, classification standards. The bill will also create consistency in how these deaths are classified and reported, improve the collection of accurate SUDEP data, helping us better understand its prevalence, strengthen transparency and accountability, and encourage collaboration between medical examiners and researchers. Ultimately, this bill is about ensuring that every epilepsy-related death is properly recognized, carefully investigated, and accurately reported. Today, you'll hear from families who've been directly impacted by this. their stories underscore why this legislation matters and we respectfully ask for your support and a yes vote today thank you sponsors committee are there any questions representative johnson thank you madam chair i thank you sponsors for bringing this um this is just more me being kind of nerd kind of wondering on this uh if a coroner finds them and they don't know the cause of death does this allow them then to go back in the records later once they're able to identify that and update it. I'd like to take Representative Gilchrist. Thank you, Madam Chair, and thank you, Representative Johnson, for the question. We have a few folks that are going to testify on behalf of the Epilepsy Foundation. I think that actually might be a good question for them to talk about the process, so if you don't mind waiting for that, that would appreciate it. Thank you. Thank you. Any other questions? Representative Gilchrist. Thank you, Madam Chair. I also wanted to address, I know Barone had to step out, but he asked a great question earlier today when we were discussing the bill about how, why does it need to be on the death certificate? And I also just wanted to put on the record that we worked closely with the coroners in the state to make sure that this was something that they could support as well. And the death certificate is the most important document for clarity and consistent documentation for families to get closure, but also to track the reason why someone died. They also don't necessarily accurately identify epilepsy-related deaths in the report, so that's why we need death investigators to be up to date on the latest recommendations. So I just wanted to make sure, especially since he stepped out, that we talked about this, but I wanted to make sure if that was a question for anyone else that that was clarified.

and I am VP at the Epilepsy Foundation of Colorado and Wyoming. I'm here to testify in support of SB 26-077 on behalf of the 60,000 individuals living with epilepsy in Colorado and the many families who have tragically lost loved ones to epilepsy and SUDEP. As you already heard, annually, 1 in 1,000 living with epilepsy will die, and these numbers are likely underestimated. For more than 20 years at the foundation, I have walked beside families after their worst day of their life. I have stood with families whose futures changed in a single devastating moment. we have lost far too many to suit up, and each loss is not just a statistic. These deaths are described as sudden and unexpected, but for families left behind, they are also incomprehensible and isolating. What makes a heartbreak even heavier is what happens next. Families come to us desperate for answers. They want to understand what happened and to know if something could have been done. They want reassurance that this will not happen to anyone else, and we have nothing to give them. When a death certificate is returned, listing cause unknown, the pain deepens. That phrase does not provide clarity or closure and it leaves families suspended in uncertainty, grieving not only their loved one but the absence of answers. For individuals living with epilepsy and for parents raising children with epilepsy, the burden is profound. and to learn once they have a child with epilepsy, that burden is difficult. But then to learn that SUDEP is a possibility, it is overwhelming. So it introduces a silent fear that follows them every night with no real understanding or prevention. This is not acceptable. No family should leave a coroner's office with more questions than they had when they walked in. no parent should lie awake each night fearing their child may die Lincoln law takes an important and practical step towards addressing the gaps in data and inconsistencies in how epilepsy deaths are investigated and recorded I ask you to please support the bill. Thank you.

Good afternoon, committee chair and committee members. My name is Amanda Garland, and I am a resident of Elizabeth, Colorado. I am here today on behalf of my son, Marcus, who died of SUDEP on May 31, 2025, at age 18. I am testifying in support of Senate Bill 77. My middle son, Marcus, was funny, mischievous, endlessly forgiving, and incredibly brave. He was diagnosed with epilepsy when he was in the first grade. He suffered from absence and generalized tonic-clonic seizures, or grandma seizures as most people know them by. We were never informed about SUDEP or educated about his risk, and we did not learn about SUDEP until after he died. When Marcus passed away in his sleep, his death was attributed to epilepsy complications. His medical examiner had never heard of the term SUDEP, so it was not documented or reported as such. As a result, his death is not reflected in SUDEP data, and this is why I am here today. We are told SUDEP is rare, yet many experts believe it is underreported and inconsistently documented. Without reliable reporting, we cannot measure the problem and cannot properly address it. Senate Bill 77 is about ensuring that SUDEP deaths are consistently recognized and documented. It is about truth in reporting, and ultimately is it about saving lives. Had SUDEP been openly discussed with us and risk factors explained, we could have made changes to Marcus's lifestyle and taken additional precautions to mitigate his risks. Sadly, I will never know. I do know that accurate reporting and data collection could prevent other families from sitting where I sit today As a mother, I will forever live with the guilt that I could not save my son I should have known, I should have done more But I didn't know, so I'm trying to do more now I respectfully ask you to vote in favor of this bill So that every suit-up death is properly counted, acknowledged, and learned from My son's life mattered, his death should count Thank you for your time and for allowing me to speak on this issue and honor my son, Marcus Yes. Thank you.

Hello. Madam Chair and the committee, my name is Tracy Abeda, and I'm here today representing the Epilepsy Foundation and my son Lincoln. Thank you for having us. Finding joy in everything, every day. Loving his friends and family deeply. Hugging everyone, even strangers. Never giving up when things got hard and a smile that could light up the room and your heart. That was my son, Lincoln Abeda. Ask anyone who knew him, they would say the same. He was simply the best. Lincoln had Gervais syndrome, a severe form of epilepsy that causes uncontrolled seizures and many other challenges. He experienced frequent nocturnal seizures and was on multiple medications, including an advanced medical trial that was showing real promise. The month before he died, he had had the few seizures he had had since he was four years old. But none of that mattered. It didn't matter how deeply we loved him. It didn't matter that we had a monitoring camera in his room every night. It didn't matter that he was on the cutting edge of treatment. And it didn't matter that my husband Brian and I did everything in our power to prevent SUDEP. It still happened under our roof. Waking up to find our 10-year-old son lifeless is a moment that will never leave us. That is why I'm here today asking for your support of Senate Bill 077, Lincoln's Law. We do not want another family to endure what we have, especially if it is preventable. data is critical to science without it we cannot measure the problem or understand its true scope we still do not know what causes sudden unexpected death in epilepsy There is currently no consistency or accuracy in recording SUDEP deaths in our state There are also no uniform guidelines or coroners and medical examiners when identifying and documenting these deaths. Without accurate data and standardized investigations, we cannot fully understand SUDEP, and without understanding it, we cannot prevent it. Lincoln's law addresses these gaps and establishes standardized investigative protocols for medical examiners and coroners. These are critical steps towards consistent data collection, stronger research, and meaningful prevention. Data drives innovation and innovation saves lives. Lincoln's third grade teacher once told us if everyone lived like Lincoln the world would be a better place. Live like Lincoln is now our family's promise to turn unimaginable pain into purpose and to find joy in every day. I respectfully ask for your support of Lincoln's law SB 77 so that fewer parents wake up to a nightmare like ours and fewer families have to live with this unbearable grief. Thank you. Thank you. Go ahead. State your name, who you represent, and you have two minutes. My name is Brian Abeda. I'm here representing my son Lincoln in the Epilepsy Foundation. My name is Brian Abeda, and I'm a father of a child who lived with epilepsy. My son, Lincoln had Dravet syndrome, a severe form of infant onset epilepsy characterized by seizures beginning in the first year of life. When Lincoln was just eight months old, our neurologist told us about SUDEP, unexpected death in epilepsy. We were fortunate to be informed, while many families are not. From that day forward, my wife and I knew we could one day face the most devastating loss a parent can endure, losing their child. And even more frightening was the possibility of losing a child as something that lacks research, education, and consistent tracking to truly understand it. After Lincoln's diagnosis, we made a decision. We would give him the best life possible. We would not let the fear of SUDEP define our lives. We pursued every therapy available at school and at home. We monitored him constantly. We managed thousands of seizures over the course of his life because we never knew which one would be his last. Lincoln did not understand the concept of SUDEP. He did not live with fear. He just lived. Lincoln loved life as much as anyone ever could. He loved with his whole heart and tried to be best friends with everyone he ever met. He gave the most soul-touching hugs you could ever imagine. On August 9th, 2024, I woke up like I had every morning for the previous 10 years and checked both our seizure monitoring systems. There were no alerts. I went in to wake him up, and at that moment, our lives changed forever. Lincoln had died from a seizure that lasted 10 seconds. Our monitoring system alerts us after 15 seconds of movement. 10 seconds, and he was gone. This is SUDEP. we consider ourselves lucky to know it was SUDEP because we witnessed it. Many families are left without answers, but knowing does not bring peace. What is harder is knowing that there was nothing more we could have done and not understanding why it happened. We know its name's SUDEP, but we don't know its why. We don't know its how, and we don't know how to prevent it. People living with epilepsy should not have to live in fear of the unknown. Families deserve awareness. They deserve research. They deserve answers. Lincoln lived without fear. He lived fully. He loved fiercely. If this legislation ensures more education, more tracking, more research, if it presents even one family from waking up to the morning that we did, then Lincoln's life will continue to make a difference. We ask you to support this bill. Thank you.

I sit so low.

That's true.

You can move the microphone.

I sit so low.

That's okay.

Oh, now you just turned it off.

There you go. Good afternoon. I'm Linda Coughlin-Brooks. I am an RN, thanatologist, and grief counselor in private practice. Most importantly, I'm mother to Carrie Ann Coughlin, who died from SUDEP at age 17. After her fifth and final tonic clinic seizure in 1997, I would soon learn from my medical examiner, Dr. Mike Dobertson, forensic pathologist that Carrie's cause of death was SUDEP, meaning no other findings for her cause of death. It's a diagnosis of exclusion. Her death certificate was one of a very few at the time with a death classification of SUDEP. After 25 years in my career at the time, I had never heard of SUDEP or been told about it by Carrie's neurologist. I engaged Dr. Doverson in SUDEP Research Project, a retrospective, which we were published in the American Journal of Forensic Pathology, and I'm very proud of that work. Unfortunately, the changes we hope would take place are still being asked of you today. We need to improve patient awareness, epilepsy education, providing SUDEP information immediately at diagnosis. Appropriate death investigation and pathological examinations are imperative in seizure-related death. Classifying these deaths as such would provide better mortality data as well as building an accurate database for further research. This was published in 2005 by our work. What we are asking today has not changed. We have not come very far. Epilepsy is not only a disease you live with, but one that you can die from. knowledge and information have power i urge you to give patients and families all the tools available for a possible better outcome and in my work with the bereaved families by sudep without any prior knowledge of its existence or prevalence leaves them with feelings of shock anger regarding the information void and a feeling of guilt and regret and ultimately a lack of trust of the medical system. The situation often delays the ability to focus on their unique grief. I thank you for your time and attention, and please join us to improve data collection, research, surveillance, and prevention by passing this bill, and I'm happy to answer the question that you proposed earlier.

You're making us dizzy.

I appreciate you. I'm sorry. I'm in my car. I'm the life of a working mom. But Madam Chair and members of the committee, thank you for the opportunity to testify today. My name is Rachel Peterson, and I'm here representing myself. I'm also on the board of the Epilepsy Foundation of Colorado and Wyoming. I'm the mother to two beautiful children and today I'm here to support Lincoln's Law. Although my family has not experienced the tragedy of losing a loved one to SUDEP, we live every day with the possibility that it could happen. And I am here to support families like the Avedas who have lost and advocate for this community My son Brooks had his first seizure 10 years ago this month Since then he experienced hundreds of tonic seizures that are long severe and terrifying to witness. His seizures happen at night and can last up to five minutes. Because we never know when the next one will come and don't have an effective monitoring technology for his seizures, one of us has slept next to him every night of his life for the past 10 years. I fall asleep with him beside me, hoping I can trust my parental instinct to wake me up if something happens. We wake up multiple times a night to check on him. The smallest change in his breathing or slight movement can startle us awake. And so relying totally on instinct is a very scary place to be. From the beginning, we knew that we needed to take seizures seriously and do everything we could to keep Brooks safe. But if it weren't for my own research, online communities and the Epilepsy Foundation, SUDEP would not have been on my radar for the past decade. Our doctors didn't mention it early on. It wasn't included in the information we received during those first initial months. Even today, I've never received any clear scientific or technical information about SUDEP. The truth is there's just so much to still understand about SUDEP. So providing accurate information, improving death investigations, better tracking, that's just the first step to further understanding SUEDUP. And the families who've lost loved ones to SUEDUP deserve to have those deaths properly identified, tracked, and understood. This will not unnecessarily scare families like mine. It will equip us with the knowledge we need to do everything possible to protect our loved ones. When you're raising a child with epilepsy, you're not looking to avoid difficult truths. you're looking for information that can help keep your child safe. For that reason, I strongly urge you to vote yes on this bill. Thank you for your time and consideration.

Okay, can you hear me now?

Yes, we can hear you. Okay, thank you. Thank you. My name is Chelsea Stillman. I'm a clinician in Who Cares for Individuals with Epilepsy. I urge your support of SB 26077 because it represents not just policy, but best practice alignment. National data estimates that approximately one out of every 1,000 people with epilepsy will pass from SUDEP every year. But this rate is likely inaccurate due to inconsistent documentation of deaths in this population, and the real rate is likely much higher. SUDEP accounts for about 10 to 20 percent of all epilepsy related to uncontrolled seizures. this number can climb dramatically with accurate reporting. Even more, the lifelong risk for SUDEP in those with epilepsy, especially those with epilepsy since childhood, climbs even more with approximations, with estimates approaching 1 in 70 in a person's lifetime. I personally see 20 to 30 patients in clinic every week, with 8 to 12 of them being new diagnoses of epilepsy. When I personally counsel families about the risk and benefit of starting medications or not in the setting of a new diagnosis, I often cite injuries from seizures themselves but also the risk of death Right now I cite the statistic of one in a thousand but potentially if there is an underestimation by even as much as half of all deaths in epilepsy from SUDEP, you can imagine feeling differently as a parent facing a risk of death of one in a thousand or even one in 500. If you compare if it were 50% more, we know that when children with epilepsy take anti-seizure medication, the risk of SUDEP also reduces. And so a more accurate statistic may increase medication compliance, which can reduce all causes of morbidity, injuries, hospitalizations, and epilepsy. Personally, I have spent 16 years volunteering at epilepsy camp. In too many years, I have seen a child at camp one year and an empty chair the next. And too many times as a clinician in epilepsy, I've gotten notices from nurses about a patient found down in their beds by mom when getting up for school in the morning. And too many times I've called families and wish that as a medical body we knew more or could have done more. As a parent myself, I find this thought of seeing that one morning unexpected when nothing is amiss. It's gut-wrenching. SB 26-0771-aligned practices and categorize HUDEP-related deaths. And I appreciate your time on this matter. Thank you so much.

Representative Johnson. Thank you, Madam Chair. And going back to my question, Kieran, it's very concerning when you have a death certificate that has an unknown. My question is, with this bill, does that allow that to be opened so families can have that closure? Or at least in the future, does it allow that with new studies and new data, as more people are getting aware of it, that if they need to update, that they'd be able to?

Linda Coughlin.

You kind of switched around.

Thank you.

Thank you. I'm not sure what the parameters are for the medical examiners as far as going backwards and being able, in our research project, which was a retrospective of Denver Coroner's office in Arapahoe County, we were able to re-identify 13 unknown causes of death to SUDEP. by virtue of their medical examination, the toxicology, and all the parameters that come and help them come to conclusion. Those families were then given the response that we did then know their cause of death, and it was very welcome information to all of them. Thank you. Can I add to that, though?

I'm Marcy from the Epilepsy Foundation. I believe that the way this bill is written, it doesn't necessarily open it up to past investigations. It's moving forward. That being said, I suppose if there's a legal thing with the coroners, they might be able to do that if they try, but it's not how this bill is framed. Does that make sense? Thank you.

Thanks, Ms. Coughlin-New.

You mentioned 13 causes of death connected with epilepsy. What are those? The diagnosis for SUDEP is a diagnosis of exclusion When they do the autopsy no other cause of death is found And coroners, part of this bill is to improve the investigative process. Some of that is through anecdotal narrative as well as the physical examination. So if someone has a tumor or a lesion, that might exclude them from a SUDEP diagnosis. So it is the whole picture. And this particular folder that I have was from Educating the Coroners after doing our research project. And the tagline here is the search for the truth. At the time that we did the presentation, there was much pushback from the coroners. This is a coroner state, and John the plumber could be a coroner versus a medical forensic pathologist who's doing diagnosis. So there is a complexity there and a need for education. Does that answer your question?

Thank you, Madam Chair. We do have one small amendment that's being passed around right now. I move L-006 to Senate Bill 077. Second.

So CDPHE requested this technical amendment. It just changes the line 22 on page 4. After registered, it inserts medical certifier. This just ensures the bill uses existing terminology that appears elsewhere in statute and regulation for users registered with our vital record system. So just a technical amendment. and we ask for a yes vote. Thank you.

Thank you, Madam Chair and committee. First and foremost, I'd like to thank all the witnesses that came out to share their lived experience and hope so we can make a change in this state. This bill is about consistency across jurisdictions and data. And I will say, as the stepmother of a child that had a seizure disorder, he did grow out of, I can only imagine the pain that they brought with them today, but also... the hope that these stories can make a difference. So with that, I ask for an aye vote.

Thank you, Madam Chair. I also wanted to reiterate a deep thanks for all the folks that came and shared their story and are turning their tragedies into something positive and something that will bring positive things to other people's lives. And so I'm so grateful for that. And their stories were incredibly powerful. and their lost children will be remembered, and their legacy is hopefully something really, really positive. So I'm really grateful for that. As Representative Stewart mentioned, both of us bring our roles as moms to this work often, and it guides a lot of the work I do and the focus on kids and the focus on making sure that we address issues like these rare occasions where SUDEP happens. And I, as a mom of a kid with a rare genetic disorder, knowledge is power, even when that knowledge is devastating. And so I didn't think I was going to get emotional. I'm just so moved by their story. So I am so proud to be bringing this bill with Rep Stewart today. and to provide knowledge and education and hopefully eventually prevention. So we ask for an aye vote today.

I move Senate Bill 077 as amended to the committee of the whole with a favorable recommendation. Second. Thank you. With that,

Representative Zavron.

Yes. Bradley.

Gray. Yes. Hamrick. Yes. Johnson. Yes.

Wrighton. Yes.

Wook. Yes. Gilchrist. Yes.

Yes. Yes. that bill passes 13 to 0 you are on your way to the committee of the whole excellent job alright The committee is going to stand into a brief recess to get our next bill sponsors up Thank you Thank you. Thank you. Okay, the Health and Human Services Committee will come back to order. just to remind everyone we are coming back into the amendment phase for the sunset review of the Colorado Podiatry Board and we're just the committee has been given two amendments so I think the next order of business would be to would anyone like to move amendment two I move Amendment 2.

Does Amendment 2 get moved to Amendment 1?

Thanks. Sabrina Darling, Office of Legislative Legal Services.

there's no other way to undo the change. Okay, we're going to do another short recess. The Health and Human Services Committee... Thank you Thank you. Thank you. the health and human services committee will come back to order thanks for everyone for your patience we got some complicated processes and we just want to make sure we do this correctly So Representative Stewart Thank you Madam Chair I move to reconsider Amendment 1 Second. Representative Burrow? Second.

Yes. Redfield.

Yes. English.

Yes. McCormick.

Yes. Stewart.

Yes. Leader. Yes. Gilchrist. Yes. Passes 13-0. Okay, Representative Stewart.

Representative Johnson seconds.

Representative Johnson. Thank you, Madam Chair.

Any questions? Oh, we need a second. I'm sorry. Vice Chair Leader, seconds. Okay.

Any questions on that? Okay. Any objections to that? Okay. There were no objections. Okay. Amendment number two passes. Representatives. Okay. Are there any additional questions on amendment one as amended by amendment two? Any objections to that? Okay, with that, Amendment 1 as amended passes.

Do I have a second? Second. Representative Ryden seconds. Do you want to describe the amendment?

Ms. Darling. Thank you, Madam Chair. Rita Darling, Office of Legislative Legal Services. So this is a conforming amendment based on Amendment 1 that you passed. So the bill title would then read the continuation of the Colorado Podiatry Board, and in connection there with implementing the recommendation in the 2020 Sunset Report by the Department of Regulatory Agencies to require podiatrists to develop a written plan to ensure the security of patient medical records. So it continues the Pothiatry Board and implements recommendation number two. So the title conforms to that now.

Thank you, Madam Chair. I move to introduce the podiatry sunset as amended. Do we have a second?

Mr. Shadum, please call the roll. Representative Zabon.

Yes. Bradley.

Yes. Frey. yes Hamrick yes Johnson

yes Wrighton

yes Wook

Thank you, Madam Chair and members of the committee. So we're back again on House Bill 1249. This is a bill that we think, you know, needs to be addressed as an issue regarding estheticians. and people who own these med spots. Unfortunately, we were not able to get to a place because there's so many different parties that are a part of this whole ecosystem, and we have decided to PI this bill and then bring it back next year. So with that, we respectfully ask for the bill to be postponed indefinitely.

Thank you. I move House Bill 261249 to be postponed indefinitely at the request of the bill sponsors.

Representative Barron seconds.

Yes. Bradfield.

At the request of the sponsors, yes. English.

Yes. McCormick.

Yes. Stewart.

Yes. Leader. At the request of the bill sponsors, yes. Madam Chair. Yes. The bill will be postponed indefinitely with a vote of 13 to 0. Thank you committee. Thank you sponsors. With that, the Health and Human Services Committee is adjourned.