House Health & Human Services [Apr 22, 2026]

Mr. Shudum, please call the roll. Representative Zabaron.

Bradfield.

Bradley.

English.

Bray.

Emmerich.

Johnson.

McCormick.

Wrighton.

Stewart.

Wook.

Leader.

Here. Here. Okay, welcome everyone. Thank you for your patience. Sorry I was a little bit late today. We are hearing two bills this afternoon, Senate Bill 006 and Senate Bill 140. We'll have two minutes for witness testimony with 10-minute panels. It looks like we have our wonderful sponsors here and we'll get started right away, especially since they are JBC folks that need to get back to their other jobs. So with that, sponsors, tell us about your bill. Who would like to go first?

Representative Brown. Thank you, Madam Chair, and thank you, committee, for your attention today. First of all, I just want to say what an honor it is to carry this bill along with my good colleague, Representative Taggart. I know that he cares very deeply about this policy, as do I, and it's great to work with him again. I think, as he mentioned, that Senate Bill 6 is really about parity in access to pain treatment options. As he mentioned, there are non-opioid treatments that are subject to additional administrative barriers like prior authorization or step therapy that opioids are not. And this is, you know, we are challenged because the system can often mean that lower risk options can be harder to get than a higher one. This bill will ensure that non-opioid treatments are not placed behind additional hurdles that don't apply equally to opioids. It doesn't remove opioids as an option, which I think is important. They remain an important and necessary tool in many clinical situations. But, you know, I think we all know people in our lives who have struggled with addiction, many of whom might struggle with being prescribed an opioid treatment. And for those folks in particular, I think it is important that we have options so that they can be better guard against the potential of a relapse. I think that what this bill also does is it supports providers in making decisions based on clinical need rather than specifically just insurance design. We're not really interested in this bill in expanding coverage or mandating new benefits. It is really about existing FDA-approved treatments and how they are accessed. We can have a debate about what the nature of a new benefit is, but I think clearly we believe that pain management should be covered It is clearly currently covered under existing plans and this is about making sure that existing opioid pain relief and non pain relief are on equal footing. I want to make sure that we aren't necessarily limiting insurers' tools. instead we are ensuring that those tools are applied equally between these two types of therapy. I want to, I'm going to just draw your attention to the fact that anytime that you're talking about something like this, which looks potentially like a new benefit, Senate Bill 2240 from a number of years ago requires that we go through an actuarial analysis of what this bill will cost. We did that. We requested the study back in the summer. The Division of Insurance conducted the study, and they found a couple of different things. First off, what they found was that this particular bill, this policy, would increase premiums by an average of about $0.45 per member per month. That's about $5-ish a year. And so, you know, I want to be honest with the committee about this, that this is a policy that does have a cost. and it will increase premiums slightly. But I also want to put that in the context of, as Rep Taggart mentioned, the broader problem that we are facing with opioid addiction, and that has massive economic problems. It is also important to note that actuarial studies don't have good ways of understanding what the sort of societal benefits of a policy like this is. Actuaries in the insurance world, they sort of project costs within a given plan year, but they aren't so good at understanding how this might impact costs. But the actuarial study that was commissioned did note that modeling simulations performed by, I believe, the actuarial firm Milliman indicated that if we replace just 10% of the new opioid prescriptions with non-opioid pain management alternatives, It's estimated to prevent 323,000 cases of opioid use disorders, 11,000 overdose deaths, and $88 billion in associated costs. If we were to obviously increase that to 25%, that's 800,000 overdose cases or opioid use disorder cases, 27,000 deaths and $221 billion in costs. So what we are doing here is making a small investment in premiums to help prevent long-term and really catastrophic consequences for many Coloradans. So, I think it's important for us to think about the balance that we are asked to make in health insurance and what really health insurance is all about And it is this shared risk of really bad outcomes for folks And I think that where in my opinion I feel very good about sponsoring this bill because I do think that it helps to deal with this greater societal harm that is clearly having a huge impact on our economy and is leading to unnecessary deaths. So with that, I think we would entertain questions.

Thank you, Madam Chair. And thank you both for your work on this. The ability for patients and doctors to be able to prescribe the most effective medication in their eyes, something that Representative Taggart said, that we do need to get back to having doctors be in charge of what's best for the patients and not so much what happens in the middle. So my question is, and I may have to save this for one of the witnesses, but my understanding is that plans have formularies with different levels of medication within a formulary, and I'm not sure exactly how those levels are set, but that this bill would require that there's at least one non-opioid prescription drug available as clinically appropriate alternative to an opioid in each of the formularies' categories because I think that is one way that plans delineate their costs. I'm not sure about that. I may not be getting to this question very well, but it has to do with the fact that you're looking at equalizing these non-opioid medications, which could be an NSAID like Celebrex or Tylenol or lots of different categories, to the least restrictive rules and pre-auth that are in each formulary category or just across the board. I'm not making any sense. I'm not making sense to myself. Am I making sense? So I just want to know, I see that we're trying to get to equity in non-opioid choices and opioid choices as far as a plan. But are there still the ability to choose at least one non-opioid in every level of their formulary?

Thank you, Madam Chair, and thank you, Representative McCormick, for that question. Yes, so health plans have tiers of cost-sharing related to their prescription drugs and the prescription drugs that they cover. And we are not necessarily mandating that they have options in each category, but if they have opioids in a particular tier, then they would have to have a non-opioid option, the way I read the bill, in that same tier, because otherwise you would be placing an additional cost sharing or an additional cost burden on a drug that didn't exist in the same tier. So basically, wherever the opioids exist on a formulary, the plan would need to cover those non-opioid options at the same level. And that includes all of the sort of utilization management requirements, the prior authorizations, the step therapies. Whatever the plan requires for opioids, they would have to do the same. So you don't have to have these things at every tier, but wherever they're covered, they have to be covered the same.

I've got a couple questions. Thank you, Madam Chair. I'm looking at this. It's very similar to the way I structured my kidney bill. And I see the defrail in here. Did you want to?

Okay. So I see the defrail language in here. So what's going to happen with that if I'm looking at it in the fiscal note? Yeah.

Well, can you explain that piece? Because I know we are waiting to see what the feds are going to do with the defrail on that.

That's a very good question, Madam Vice Chair. Thank you, Madam Chair, and thank you, Madam Vice Chair, for your very astute observation. You are correct. There is currently no similar state defrail language in this bill. That is something that I have been working with stakeholders on to try to remedy that because I am worried, especially given a third of the JBC sitting before you, we are concerned about whether this would potentially create some sort of state requirement to pay back the federal government for the incremental amount of the APTC that this might cause. etc so um uh we've been working on that language we haven't we haven't landed exactly on it but i will say that we are we are using your bill as the model for that so uh thank you for uh working that out and uh you know stay tuned on that but we don't have an amendment to offer today so

Representative Tiger.

Representative Bradley.

I wasn't going to mention it. I was going to have Bradley go next. But since you mentioned the state health care plan because I had to do the same thing Did you stakeholder that with them with the state plan Yes Representative Brad Well with DPA certainly With the Colorado wins. With Colorado wins.

Representative Bradley.

Okay.

Representative Bradley, do you have a question?

Representative Bell? Sure. Thank you, Madam Chair, and thank you, Representative Bradley, for your questions. I think it's important. And we always, we often, what this particular, there is one drug that is available. I'm actually, I've actually been told that there's four different drugs. I suppose it depends on maybe what your definition of a comparable drug is. There are many others that are in the pipeline that are under FDA review. And I think it's something that, you know, I've really grappled with, with this particular bill. I'm just going to be completely honest with you here that I want to – I don't believe that we should necessarily be running bills on behalf of one particular company. I don't believe that that's what this is. I believe that this bill is adding another tool in our toolbox, clearly a tool that is – it is going to become – they're going to become many more of these same types of tools that we're going to add to our toolbox. And what this bill does is it gets ahead of the sort of regulatory process so that we are ready when those particular drugs hit the market and then we have even more options. I also think it's important for us to think about to go back again to what is the problem that we're trying to solve here. And we do often ask private industry to help us solve problems, right, whether it's a new treatment for a particular disease or, in this particular case, how do we solve the opioid problem and still treat people's pain? And I think that that really what we grappling with here is what is the good that can come out of something like this versus you know what is the harm potentially to the increased cost of premiums or the increased premiums So I think again every member can make that decision and balance these sort of two competing issues for themselves But for me, the societal harm is so great that I think that, and has been for so many years, that we need to have every tool at our toolbox and we don't need extra barriers ahead of them. Representative Bradley.

I'm sorry. Representative Tiger had a response.

Representative Bradley.

Representative Bradley, do you have a question?

Representative Bradley.

I'm sorry.

Representative Bradley. Thank you. We're saying that this bill is only going to raise premiums 45 cents. Since 2019, we have passed bill after bill after bill that increases premium cost, and our constituents are struggling with basic necessities in our state. Do you know the fiscal impact of raised premiums on the commercial industry in the state of Colorado? This is yet another one. Do you know what that impact is?

Thank you, Madam Chair. And thank you, Representative Bradley. I appreciate your question. I do not have the answer, the exact answer to your question. But I will say that, you know, when you're paying, in many cases on the individual market, you know, a person's going to be paying $500 per member per month. And that's just a rough guess. Like that's the base level premium. 45 cents is certainly less than 1%. Now, I am also aware that every little bit adds up and that we need to be very mindful of that. And that's why you've seen me advocate for policies in this very committee that help to lower insurance premiums through state-based assistance and to try to fight against some of the headwinds that we've been facing from the federal government taking away some of the enhanced premium tax credits that were making insurance much more affordable. So we know that insurance does you no good if it does not cover the things that you need. And so that bills like this is fundamentally what that is about.

Thank you. I guess so my question is if this is not just for one pharmaceutical company or one particular drug, why does the bill read that way? And if it isn't, then what are the other drugs that's going to be a part of this?

Thank you, Madam Chair, and thank you, Representative English. The bill itself is not specific to an individual drug at all. It's to non-opioids as a whole. Where the one drug comes into the situation is the report that our insurance division did with a group of Milliman. And they, in fact, looked at this one particular drug that is on the market and available today. But I don't want you to think the bill doesn't call out a drug at all. It just refers to the category as non-opioid, and that's the way it should be. It should not be centered around one specific drug.

Thank you, Madam Chair. And it's no surprise on this committee, you know, when I'm looking, you know, like patients and opioid use, especially for those with rare diseases, chronic issues, chemos. And I know that's not affected by this bill. I just know we sometimes see unintended consequences. So my question for you all is, if we do see a rise of providers moving to non-opioid and are highly vulnerable, highly chronic patients, if you'd be willing to come to the table with me to make sure that we are getting the treatment at the patient's discretion on what they need. Understanding opioids do have a highly addictive factor, but we can't let that stereotype derail it from the folks who highly need it. I know I was denied any medications after a total needle replacement because they said I was too young for opioids. And I've heard other stories on chemos where they were struggling with their ports and infections and other treatments were not working. So I'm just thinking of the long-term effect on patients that if this should be the case that providers start to first try the non and move away from the opioids for the patients who directly need it if you be willing to come to the table to make sure patient access Representative Brown Yeah thank you Madam Chair and thank you Representative Johnson

Thank you. And I'll quote, it's not directly from this. I just know down the road, having known providers and patient stories of them being denied already, that offering another way to delay that for those who highly need it. I'm just saying, would you be open to that idea if this is something that leads that way?

Thank you, Madam Chair, and thank you, Representative Johnson. I think we have to be open to that. If we hear by way of a bill of this nature that it is extending the decision making when in fact it's intended to do just the opposite, if we hear that, then we have a responsibility as a legislative body to step back in again. But I'm hoping that's not the case. I know you had a major knee replacement. I had a pretty significant heart procedure just before I came back here. And I know I had a very specific conversation with the surgeon that I did not want opioids for any length of time afterward. And thank goodness he listened to me and he said, Rick, I am only going to prescribe for four days. but you need to pick up the phone if the over-the-counter Motrin that he also prescribed to me, you need to pick up the phone if that's not, if you're in incredible pain. And I just, for some stupid reason, I have a very high pain threshold. And so I never made that phone call. I just switched off of it. But I'm probably somewhat different there because of being a long-term athlete. I've had a lot of injuries over the years and have learned how to deal with the pain that goes along with being a stupid athlete.

But other people are not that way. It can easily get hooked on those products. Sorry to interrupt there. Representative English. Thank you. Just, I guess, going back to my question, because I wasn't able to get a follow-up in that moment. No the bill does not particularly call out one single drug but it says one at least one And so I was trying to get clarity around that piece of it

Yeah, thank you very much, Madam Chair, and thank you, Representative English. I'm going to pull up what I know about the pipeline at this point. There are four different companies that I believe have an approved product at this particular point. And then there are at least...

Representative English.

Sorry, there's another 21 companies that have something in the pipeline. What this bill does is it requires the company to have at least one non-opioid pain management drug on their formulary. The bill is agnostic as to which one that is because, as I've mentioned, there are many in the pipeline. There's some approved. So at least one would have to be covered at the same rate and assuming that it has the same sort of clinical indications. And I think that's one of the important points about this bill is that clearly opioids are better at managing pain than some other maybe over-the-counter drugs in some cases. And so, you know, you want to make sure that you have the same clinical indications in terms of pain management. So does that answer your question, Rep. English?

Yes. Well, so just to be clear, you said there. So let me just ask it this way. So are you saying there are perhaps multiple pharmaceutical companies that can have at least one non-opioid prescription drug available?

Yes. So there are multiple pharmaceutical companies that either have an approved product or will in the future, and that at least one of those approved products from one of those companies must exist at parity, essentially, at the same tier with the same cost-sharing and utilization management requirements as the opioids. So it does not necessarily favor any one particular non-opioid drug, but it does make sure that at least one of them is available. Additional questions from the committee?

Thank you, Madam Chair. Just to follow up on that, there are already many non-opioid pain medications that are not in the pipeline, that are not on this chart that you were just referring to, that could already be considered in those tiers that we have mentioned, if they have the same clinical application, you know, maybe even more efficacious. But there are many others in different categories that this bill will also umbrella in. All the NSAIDs, gabapentin, all the things that are already out there will be included, correct?

I think that's worth noting. Yes that is Your pharmacological knowledge is greater than mine is as the former veterinarian but yes Okay Seeing no additional questions we will move on to witness testimony Thank you sponsors Okay.

My name is Kevin McBattridge. On behalf of the Colorado Association of Health Plans, CAP appreciates the public health goal of reducing opioid addiction and lessening deaths and addiction to these drugs. We understand the bill is an attempt to address the opioid addiction in Colorado and ensure access to effective pain management medications that have less addiction risk. Health plans also have an obligation to provide coverage that is affordable to members while ensuring access to care. CAP offered amendments to this bill that would reasonably ensure access to these novel medications while also allowing plans to use tools to manage costs. Similar language has been adopted in other states where these bills have been introduced and passed. Unfortunately, those amendments were rejected, and that is why I am here in opposition today. To demonstrate the cost impact, the actuarial analysis as referenced earlier today that was completed on the bill demonstrates a one-year premium increase of $1,595,000, a five-year cumulative premium increase of $8,877,000, and a 10-year cumulative total premium increase of $20,352,000. Currently, and as earlier referenced to the actuarial study, there is only one non-opioid on the market. Jernabax is a brand non-opioid drug is priced at $15.15 per pill. For comparison, generic opioids are $0.50 per pill. That is 31 times more expensive. With the language in this bill, a health plan would not be able to have a lower cost share for an opioid than for a non-opioid. So even though the non-opioid drug is 31 times more expensive than an opioid, this bill would require the same cost sharing, which will impact costs to the prescription drug benefit. We respectfully ask the committee to oppose this bill.

my name is Patrick Boyle. I represent the Pharmacy Care Management Association. That is the pharmacy benefit managers who are hired by every insurance company, every Medicaid program, and every federal drug benefit program to try to control the cost of drugs. It is because of that that we oppose Senate Bill 6. We are mindful of the opioid crisis that no doubt inspires the sponsors of this bill to carry this legislation, but for the time being, this bill will impose both a monopoly and a mandate. And where there is a monopoly and a mandate for the offering of a particular drug, there are invariably large costs associated. Our experience in the past has been very bad. The fiscal note is dramatic depending upon how one looks at it. The cost differential is 31 times. But remember, the company that will have a monopoly for at least the foreseeable future has an incentive, indeed an imperative, on behalf of their shareholders to try to maximize shareholder value. And when you have a monopoly in a mandate, the way you do that is to increase the price of the drug. And for that reason, we are concerned what the cost will be associated with this particular mandate. And we feel it important to remind the committee that for the average family of four in this country and those who will be affected in this state, the million described by one of the sponsors, the cost of a health plan is more than $25,000 a year. And if cost were no object, this would be an easy decision. Cost is an object, and for that reason, it's a difficult one for you. I'd be happy to answer any questions.

Hi.

your time. I appreciate it. Thank you so much. With that, we'll move to Corrine Johnson.

And I just want to point out that fiscally. Thank you for your testimony. We appreciate it. We did have another person, Robert Twillman. No, it was not in there. Okay. Is there anyone else in the room or online that would like to testify? Okay. With that, we'll turn it over to questions from the committee.

the PBM will have two sets of experts who develop the formulary. One makes sure that there is in the formulary multiple options available and no gaps in availability of drugs to treat every condition that the carrier should insure for. Another group comes in and considers cost, and the PBM itself negotiates with manufacturers for what once were, prior to 1991, rebates on the price of insurance based on the fact that they insure so many lives. and can ensure that the manufacturer has a certain amount of business. Now, because of some legal decisions reached in 1991, now, instead of discounts, they negotiate rebates. And a rebate is a repayment to the PBM by the manufacturer based on a volume of the drug being purchased. for the use of those who are insured by the carrier for whom the PBM works. This is just as complicated as it sounds, by the way. And where there are competitive drugs, they can negotiate rebates, which will then be passed on to the insurance company in order to lower the cost of insurance. Where there is no competitor drug, they pay what they're charged, particularly if there's only one drug to treat a condition. The most prominent example that is generally cited was in 2013, there was a single drug that had been developed that treated hep C. Hepatitis C is a very dangerous, life-endangering condition. You had to have it on your formulary if you were a PBM. and the manufacturer thought a reasonable price for it was $84,000 for a course of it. I'm not here to tell you that wasn't a reasonable price, but when a competitor drug came on the market several years later, the price dropped by 50% because then there was a competitor. When there was no competitor, but there was a monopoly and a mandate effectively, The price was pretty high, and the health plans screamed about that price back then. Does that help?

Mr. McPatrick. Thank you, Madam Chair. Thank you, Representative, for the question. We have seen similar language in roughly 30 other states, with eight states enacting their respective bill. The amendments that we have requested are similar to what other states, and two that come to my mind are Illinois and Maine. And they have adopted those particular amendments. Regarding your second question, I think our perspective is that if there is a non-opioid drug of equal or lesser cost to the plan, we would be open to that language.

Mr. Boyle. Madam Chairman, Representative, I think our position is that we would have no leverage, at least in the immediate term, until such time as competitors came on the market. And it is that that is the source of concern to us.

Madam Chairman, Representative, inevitably, if we have to carry the drug and the drug has a monopoly effectively, then the cost will be borne by the insureds in the end, in the final analysis. The PBM will pass the increased cost of the drug benefit onto the health insurer. The health insurer will pass it along to the employer, and the employer will pass it along to their employees.

Mr. Boyle. Or whoever. Madam Chairman, Representative, where there are competitor drugs, the price drops significantly. markedly, immediately.

Representative Bradley. Thank you, Madam Chair. My other question would be, if there's only one drug, what happens if there is a shortage? I think about the EpiPens when my son had an anaphylaxis to avocado and there's a shortage of EpiPens. If there's only one non-opioid drug that lots of patients are using, what happens if there's a shortage or a bad sample or any of things that could happen to that one drug? What happens then?

Vice Chair, Leader, you had a follow-up? I did because Mr. Barl didn't exactly answer, or maybe I need to ask it to someone else. So my question was, does the mandate in this bill automatically extend to cover the other drugs, or would we need to come back and reopen the statute if the second FDA-approved drug in this class enters the market two years from now? Mr. Boyle.

Representative Johnson. Thank you. And we heard it, too. I mean, this seems too soon with the limited options we have right now, which would drive on some of the costs to the consumer or the patient with the insurance. Does that ever go down, or is it just something that always goes up regardless if we get that leveraging back or if we get more options on the market? I'm just not seeing why we don't wait until we have the market ready for this. I mean, does it go down, or does it always stay up for any of the gentlemen that can answer?

thank you everyone for your testimony, we appreciate you being here with that, since we already did the open call I think we can move to close the witness phase and then sponsors, would you like to come back up? yes are you the sponsors? No problem. Okay. Any amendments?

Additional amendments from the committee? Okay. Seeing none, the amendment phase is closed. Okay. Sponsors, would you like to wrap up?

Sorry. Thank you, Madam Chair. I guess I'd like to address the timing just for a moment. Yes, it's early on in the process. Yes, there are only eight states that have done this at this point. My understanding is, as was said, that there are 30 states looking at this. My concern is to do nothing when we have over a thousand individuals dying a year of opioid addiction is problematic in my mind. Very problematic in my mind. And yes, we're early. And yes, there aren't a great deal of drugs that have been approved other than some of the drugs that have been discussed here. But I don't think we are too early by any stretch of imagination when I look at the number of people that die, not only in the state of Colorado. I think last year, 45,000 people died nationally from opioid overdoses. So every day we lose more citizens of this country and or this state, it worries me.

Thank you, sponsors.

Representative for eight seconds. Okay, closing comments. Would you like to go now?

Representative Wright. Thank you, Madam Chair. I also work with a lot of clients who are struggling with addiction and I want to correct what my experience has been working with folks who addiction might escalate to where there is street drugs playing a role but oftentimes it starts with accessibility from legal sources, from a prescription, from whatnot. And so what I appreciate the intention of this bill is is that it's providing kind of some hope to the folks who are actively in recovery and trying to figure things out, and they're trying to manage their chronic pain. And I actually have a chronic pain group that I run, a weekly group, and I hear this all the time, and it is so hopeless. And it's not just one thing. It's many things that contribute to their addiction. So I appreciate this just for the sake of having alternatives that are hopeful and accessible in real time for folks who have exercised the gauntlet I think it is true I think there are a lot of prescribers who are leery to prescribe addictive opioids and that's why I also appreciate that now there is another way to allow that to be something that a doctor, I think we heard that from one of the witnesses, to have more options for that. So I don't necessarily share the same concern. I don't love that. Right now it's only one vendor for the most part, but I understand that it is. we have to weigh that risk with the serious harm it is doing. So thank you for bringing this. Happy to support it today. And I do appreciate that you're going to continue to try to work on some of the nuances. I know we're in the last few weeks of the session, and so I know things can get a little hectic. And you both are very busy, and I appreciate all the work you do, of course, on our JBC. And I just know you have a lot of integrity and a lot of diligence when it comes to the legislation that you both run. I respect that, which is why I'm happy to vote today.

Representative Stewart. Thank you, Madam Chair. Thank you, Bill Sponsors. I think I really appreciate what my colleague said. So well said. Thank you, Rep. Reiden. And I do believe it is a tradeoff. Like, what type of tradeoff are we making? But in the long run, I wonder, as far as public health goes, are we going to see a decrease in the money that we spend there to combat this crisis that has been going on for years? This has been a bit of a tough bill because I very much understand both sides, but we do have to start somewhere. So I am happy to be a yes today and support that as we expand these options. I did want to say as somebody that lives in chronic pain, and sometimes I would say oftentimes debilitating pain, it is frustrating that we have stigmatized opioid use because I do believe that there is a purpose and a use for these things. and perhaps as we bring in alternative medications to address this issue, we can weed out appropriate uses for opioids because I tell you right now, like, Tylenol and my liver are not going to be best friends. And so how do we work to address this? Because it is a big issue. So thank you for working and chipping away at this, and I hope we can keep going.

Vice Chair. Thank you, Madam Chair. So thank you for bringing the bill. I think it's something important, but I'm still struggling because when you guarantee coverage for a product that has no competitor, you remove the single biggest lever a payer has to negotiate prices with. So I urge you to continue to work with stakeholders on that. Because in my mind, insurance companies that cover this, but they won't cover that, makes me crazy because in my mind they're just playing doctor. And I struggle with that, but I also struggle with the fact of the opioid addiction that we have. That is huge. and I think like my colleague said that the opioid addiction start a lot of it starts with them being prescribed this and then they go to the streets because they're no longer going to get prescribed this so I'll be a yes today

and I absolutely want to see you as this bill is in the house I want to see you reach out to Colorado Wins thank you

With that, Mr. Shadun, can you please call the roll? Representatives, but on.

Radfield. Pass.

No.

Yes, for today. Yes.

Yes.

Respectfully, no.

Yes.

Yes.

Yes.

Respectfully, no.

Respectfully, no.

Yes, for today. Madam Chair. Yes. passes 8 to 5. You're on your way to the Committee on Appropriations. Thank you, sponsors. I really want to be a yes. We need the leveraging. Okay. I tried to be nice. I'm sorry. My emotions got me. Tyler and Sarah. . . Okay. Thanks, Michelle. Tyler Brown. Tyler Brown. Is that right? Yeah. I said Davis. No, that's close. All right. All right. Yeah, I know. Oh, yeah. Okay. Okay. We have our bill sponsors up here, so let's get started. Who would like to go first? Representative English. Tell us about your bill.

She's in my head, in my ear, Gilchrist. Because she's constantly over here in my ear. No. Representative Gilchrist. Thank you, my star leader. And thank you, committee. We are my co-prime for her work on this bill and her passion for supporting patients with rare diseases. We're here to present Senate Bill 140, which exempts rare diseases and plasma-derived therapies from the PDAB review, the Prescription Drug Affordability Review Board. You know, talk a little bit about why this is needed. In particular, it is incredibly important for access for rare disease patients to have access to the right medications. I think that is originally why I signed on to this bill and am supportive of the policy because, as you all know, firsthand my daughter has a rare genetic disorder and so close to the rare disease world and know that not only access but the understanding of how unique the care has to be for these rare diseases. and you know what I was thinking in preparing for this bill we have a dear friend who has a daughter with a rare disease and the treatment that she has the drug that she used for years and years and years made her sick every day A little kid who was nauseous all day long every day. And they finally switched to an extremely expensive medication that no longer made her nauseous. And that is a quality of life change that is so critically important. And so, you know, I think it is so important to Americans, it is so important to me that we ensure that we don't have outrageous prices for medication. And I think that the PDAB is attempting to work on that, and that is critically important. And allowing for these exemptions for these rare disease drugs just acknowledges the importance and the unique nature of that sort of treatment. And we'll hear from patients today about why this is important. And I think also you'll hear how important it is that we strengthen the engagement with patients in the PDAB and we make sure that patients have that opportunity to explain why access is so important and why particular drugs are so important and not risk that access issue with the threat of an upper payment limit. So I'm proud to present this bill today, really appreciate all the folks that have come out and you will hear from today. And so with that, I'll turn it over to my co-prong. Representative Johnson.

testimony. And I been given the order that they request so we going to bring up Debbie Horner Nikita Valdez Priya Tulling, that will be reading Kim's testimony, and David Danolilis, and I should know that last name, who also is going to be reading testimony. Okay, please state your name. We'll start with Debbie. I'll tell you what. We'll go back up. We'll start with Dave. We'll go from, are you ready? Whoever's ready. You want to start at the left? She looks like she's got everything out here. Just state your name and tell us who you represent, and you have two minutes. We'll go from my left to the right. It's the tiniest gray button in front of the plug, the little plug-in. There you go. I know. Thank you. You're welcome. My name is Priya Talang, and I am reading testimony on behalf of a community member. Chair and members of the committee, thank you for the opportunity to speak today. My name is Kim Johnson, and I'm here to oppose Senate Bill 26-140. I'm speaking to you both as a health care professional and as someone living with a rare disease. On a personal level, I rely on specialized medications every day to manage my condition. Without them, my health doesn't just decline, it can unravel quickly. Missing doses or delaying treatment isn't a small thing for me. It can mean losing the ability to function normally, facing serious complications, or ending up in the hospital. That's the reality I live with. I was a caregiver for my sister who battled cancer and succumbed to the disease, and that experience has stayed with me. I know what it feels like to look at treatment options and costs, and the stress of wondering how you're going to make it work, and the fear of what happens if you can't. Those experiences are why this issue is so personal to me. Professionally, I've seen how often patients face these same situations. When medications are too expensive, people don't just absorb the cost, they skip doses, delay care, or go without, and the consequences can be serious. That's why the Prescription Drug Affordability Review Board matters. It's the only tool Colorado has to step in when drug prices put care out of reach. It helps ensure that medications are not just available, but truly accessible to the people who need them. Senate Bill 26140 would take us in the opposite direction. By excluding drugs for rare diseases and certain plasma-derived therapies, this bill would remove a large share of high-cost medications from review. For patients like me, that means fewer protections at the very moment we need them most. Patients with rare conditions already have limited options. When costs rise, we don't have alternatives. We have consequences. And just last year, this legislature created a process to give patients like me more input into which drugs the board reviews. This was meaningful progress. That process deserves a chance to work, and I respectfully ask you to vote no on SB 26140 and protect the tools that help keep people like me and families we care for healthy and safe. Because at the end of the day, this isn't just about policy. It's about whether people like me can afford to stay alive. Thank you for your time. Thank you so much, and we'll just move over to the next person. Please state your name and tell us who you represent. Do you have two minutes? My name is Nikita Valdez. I'm the organizing manager at Centennial State Prosperity, and I'm asking you to oppose SB140. The skyrocketing price of prescription medication is driving up costs for hardworking Coloradans and small businesses, with more than half of Coloradans worried about affording their prescription medications. SB140 would prevent Colorado's PDAB from reviewing the cost of hundreds of commonly prescribed medications that we struggle to afford every day. We hear about the cost of prescription medications from our members consisting Coloradans who are having a hard time affording their meds on top of so many other rising costs. Last month, we conducted a statewide poll to see how Coloradans feel about the board five years after it was created and five months after setting its first upper payment limit. Our poll found that a bipartisan 67% of Coloradans continue to support the work of the PDAB to review, examine evidence, and act to lower the cost of prescription medications deemed unaffordable. 69% of Coloradans want the PDAB to work to lower the cost of more medications, not fewer. In 2024, the legislature expanded the process to ask the board to solicit even more input from Coloradans with rare diseases before they choose which medications to review. The new process will be in place before every affordability review moving forward. The new patient input process should be allowed to work before the legislature considers sweeping changes to the PDAB. Many orphan drugs are prohibitively expensive. AbbVie has increased their price of Humira, the number one selling prescription medication in 2022, by 470 percent to $77,000 a year. That's more than the average salary of someone in Colorado. In a time where affordability is such a huge issue for so many Coloradans, why prevent the one tool we have to lower drug prices from being able to do its work? Limiting medication costs means Colorado patients can actually get the medication their doctors prescribe to care for themselves and their families. Thank you so much. We'll just move on down. State your name, who you represent, and you have two minutes. Hi, I'm Debbie Horner. I'm here both representing AARP. I currently serve as the Colorado AARP State Volunteer President, and I'm also a rare disease survivor. I'm a stage four rare cancer survivor, currently in my second remission. I'm here today both as an AARP volunteer and as a patient to respectfully ask you to oppose Senate Bill 140. I want to begin by saying that I stand with fellow rare disease patients who want to ensure access to drugs they need, but this bill is the wrong tool, and it would have serious unintended consequences for the broader rare disease community. We can and we must do better than this bill. For more than 20 years, I've worked professionally to advance public health and health care quality. In 2022, that work became more personal when I was diagnosed with this rare and incurable cancer called primary angiosarcoma of the breast. It affects fewer than 0.05% of breast cancer patients and has a five-year survival rate of about 44%. After aggressive chemotherapy, radiation, and surgeries, I entered remission, but in December of 2024, my cancer returned. This time I was prescribed cabozantinib, which is known as cabamedics, to reduce the risk of recurrence. Its current market cost averages about $26,000 per month. And after multiple insurance denials, I was able to access this drug only because my current employer activated a specialty pharmacy benefit for me. Many Coloradans are not so fortunate. And when I can no longer work, I'll lose access to this drug entirely. And this is my only defense against recurrence. Capital Medics is designated as an orphan drug, meaning it would be exempt from review under this bill. While orphan drug status was intended to spur innovation it now often used for highly profitable drugs approved for multiple conditions And exempting these drugs leaves patients like me without any state protection against excessive pricing I want PDAB to be able to review my drug. The PDAB does not restrict access or stifle innovation. It simply reviews whether prices are fair. Please vote no on Senate Bill 140 and allow the PDAB to continue its vital work. Thank you. Thank you. Go ahead to Dave, and I'll let you say your last name so I don't spot her. All right. Madam Chair, committee members, my name is Dave DeNovellis, and I'm here representing the Colorado Academy of Family Physicians and specifically Dr. Kyle Leggett, who would be here, but he's in clinic right now. My name is Dr. Kyle Leggett. I'm a family medicine physician caring for patients in the clinic and in the hospital. Here today on behalf of CAFP, representing 2,700 family docs statewide, in opposition to 2,640, we believe it will severely weaken the ability of the pdab to address the high costs of medications we share the proponents goal of ensuring access to life-saving medications however we just disagree that this is the most effective way to do so this bill would essentially strip colorado's pdab of its ability to review prices of hundreds of commonly prescribed drugs in 2021 as you heard lawmakers like yourselves with the support of majority of coloradans and physicians created the PDAB to rein in out-of-control medication costs. In 2024, after an identical bill to this one was introduced, the legislature created a process to give patients with rare diseases increased input to how the PDAB determines which medications to review. I've seen the negative impact that high prices for medications have on patients on a regular basis. I've cared for patients who take Humira for their rheumatoid arthritis, an autoimmune condition in which the body's immune system attacks joints, and for many, it has worked wonders to help control their systems or their symptoms. But for some, the cost of Humira and drugs like it can suddenly change, whether it be a price increase from the manufacturer or a change in insurance coverage. This change in cost can be devastating. And I will make two points about orphan drugs. One, they are actually used to treat common conditions more often than rare diseases. Two, they are a massive portion of the prescription drug market by both new approvals and cost. Studies have shown that 75% of the sales for orphan drugs are for treating common medical conditions, not rare diseases. And since 2022, orphan drugs have made up more than half of all new drug approvals. Many bring in billions of dollars each year in revenue. Orphan drugs account for nearly a quarter of the total U.S. drug spending. At the same time, these treatments often come with significantly higher per-patient costs, frequently exceeding $100,000 annually. We ask you to vote against this bill to protect Colorado patients and to continue to let the PDAB do its job. Thank you for your time. Thank you so much. Let's see. No, we don't have anyone online. Okay, committee, do we have any questions for this panel? Okay. Thank you so much for your time. And we will call up the next panel. So, Bethany Prey, Lila Cummings, Sophia Hintze, and Laura Reinge, Pinky. And Dave, real quick, we didn't notice you signed up. If you could sign up before you go, that would be great. Don't know what happened to it. Thank you. Thank you. Okay, we will start with the people in front of us. We'll start with you in the middle. It's the tiniest gray button in front of the plug. Yes Yep it on Please state your name who you represent and you have two minutes Thank you Good afternoon Chair and members of the committee My name is Sophia Hennessy and I the Policy and Research Lead Coordinator at the Colorado Consumer Health Initiative I'm testifying in respectful opposition to Senate Bill 140. CCHI works toward ensuring all Coloradans have equitable access to high-quality, affordable health care. In 2021, CCHI was proud to champion the original PDAP legislation. In the past five years, struggles for prescription medication affordability have not gone away. Coloradans continue to ration medications, skip doses, and worry about future costs. The exemptions made under 140 would be a tremendous step backward in Colorado's efforts to rein in out-of-control drug prices. Nearly 70% of PDAB-eligible drugs would be carved out from 140's rare disease drug exemption alone. It may seem counterintuitive, but between 2018 and 2023, over half of all novel drugs approved had a rare disease or orphan designation. Drug manufacturers receive numerous incentives to create rare disease drugs, including market exclusivities and tax benefits. And that's good. We need rare disease drugs. But research also shows us that overwhelmingly, these drugs have higher price tags despite the public investment they receive. Creating carve-outs not only set a dangerous precedent for other sectors of the pharmaceutical industry, but it also nullifies the best tool Colorado has to directly address prescription drug affordability for any Coloradan who takes or cannot afford to take a drug that falls within one of these exemptions. Our board is working hard to address and implement feedback from patient advocacy organizations, and we need to give new structures time to work. They have established new thoughtful processes under Senate Bill 24203, board policy changes, and PDAC recommendations. These are in addition to statutory requirements that the board has to consider orphan drug status in every review process and may not use quality adjusted life years for any of their work. Lastly, in a time of health care cuts, the PDAC can put money back into the pockets of Coloradans. If, after a long, thoughtful process, the PDAB decides to put up our payment limit on a drug, all resulting savings are statutorily required to be passed down directly to consumers. Give the board time to do its job instead of making a choice that affects costs in the future. Thank you so much. We'll move on to the next. Please state your name, who you represent, and you have two minutes. Thank you so much. Good afternoon, Chair and members of the committee. My name is Lila Cummings, and I am Deputy Commissioner for the Colorado Division of Insurance, and I was formerly the director of the Prescription Drug Affordability Board for its first four years. We are here today in opposition to SB 26-140. First, we do want to express our appreciation to Representative Gilchrist. We came to her with some amendments that we believed would have addressed the proponents' concerns about orphan drugs while still allowing the PDAB to continue their work to make drugs more affordable for Coloradans. Unfortunately, a consensus was not reached, and we remain opposed to the bill in its current form. This bill would undermine the work of the PDAB by excluding over two-thirds of eligible drugs from consideration. In 2025, 12.3% of Coloradans, over 700,000 people, did not take a medication because of cost. All Coloradans, regardless of the drugs they take, should not have to worry about how they pay for their drugs. Neither the federal government nor similar PDABs in other states exclude drugs that treat both rare and common conditions. This bill would be an unprecedented step denying thousands of Coloradans with common conditions from having their drugs reviewed and deny Coloradans with rare diseases the opportunity to voice their affordability concerns. The concerns being raised today are not evidence of flaws in the law We believe they evidence that it is working The legislature knew market actors might threaten access so the law builds in mechanisms so the board can monitor and protect access Additionally, as you've heard, in 2024, the legislature strengthened the board's processes to ensure that the voices of rare disease patients are heard earlier in the board's deliberations. Most recently, at the board's request, the Prescription Drug Affordability Advisory Council, or PDAC, also worked with patients and caregivers to complete a report with best practices for enhancing patient engagement, bolstering the tools and methods that will be used to engage patients. I want to thank you for your time today, and I ask for your no vote, and I'm happy to answer any questions. Thanks. Thank you so much. We'll go online to Bethany Prey. Please unmute, state your name and who you represent. You'll have two minutes. Thank you, Madam Chair and members of the committee. I'm Bethany Prey, Chief Legal and Policy Officer at the Colorado Center on Law and Policy, and I'm testifying today in opposition to Senate Bill 140. CCLP is a statewide anti-poverty organization that advances the rights of all Coloradans. Federal laws on drug development, patenting, and market exclusivity have resulted in the U.S. spending more than twice as much per capita annually on retail prescription drugs as peer countries. In part due to those extraordinarily high prices, the U.S. sees higher rates of non-adherence and lower life expectancy. Colorado's 2021 bill to create the PDAB was groundbreaking. First of its kind, it created a patient-informed, data-driven, and very public process to determine first whether a drug is affordable for Coloradans and then whether an upper payment limit should be applied. This bill would prevent the PDAB from considering drugs designated under Section 360BB of the Orphan Drug Act, eliminating 70% of the very high-cost drugs currently identified as eligible for review. The designation is sought after because it comes with huge patent and tax advantages, and those advantages apply even when the drug has multiple uses or is approved for common diseases, as is true of more than a third of drugs with the designation. Because the PDAB process is so deliberate, just one drug has had a UPL applied, and that was set at the level negotiated by the manufacturer Amgen with Medicare. Nonetheless, patients are concerned about their continuing access. However, it is highly unlikely a manufacturer would leave the market. Doing so would leave the entire market share to competitors, harm their reputation, and could violate Colorado law. CRS Section 6214 says it is unlawful for a corporation engaged in business within the state to advertise goods which they are not prepared and able to supply to the public. Unless a manufacturer could exclude Colorado from the stream of national TV, radio, and print advertising for drugs, they would have to continue to supply their merchandise. Please vote no and allow the PDAB to do its job. Happy to answer any questions about orphan status and others. Thanks. Thank you so much. Next, we'll go to Pinky. It's easier for me to say. Please unmute and state your name. Thank you. You have two minutes. Hello. I am Laura Reinsch, a.k.a. Pinky, and I'm reading testimony on behalf of Ray Waldaday, who regrets she could not be here in person. And thank you, Madam Chair and members of the committee. The following is Ray's testimony. I'm Ray Wall, a Denver resident and someone who lives with a rare disease. I advocate for lowering the cost of prescription medication because I'm all too familiar with the struggle to afford life-saving drugs and making decisions like whether or not I spend my grocery budget for the entire month on a refill. I have rationed medication and chosen not to take prescribed treatment due to the cost. Over the years, this system has trained me to believe that I didn't deserve health care. Living with hereditary angioedema is a full-time job. Take your medication on schedule, spend hours on the phone with pharmacies over patient assistance programs and reimbursements, and then more hours arguing with insurance, trying to justify coverage. In the end, always just begging to be allowed to be well. I think every Coloradan has either experienced this or helped a family member through these nightmare situations. Colorado's Prescription Drug Affordability Board exists to prevent other Colorado patients from having to go through these same experiences. I want the board to be able to review the medications I take, and Senate Bill 140 would prevent them from helping me and patients like me. We need to let the board do their work so that more Coloradans aren't priced out of life-saving medications. I now have health insurance that has allowed me to access the care I need, but even this insurance carries a high deductible and ever-increasing premium. I still unexpectedly get to the pharmacy only to find out a new prescribed medication is too expensive for me to take. I still have to decide how healthy I can afford to be. This is something no one should ever have to experience. That's why we should not stop the PDAB from reviewing any medications like this bill would do. Colorado's first upper payment limit on Enbrel is projected to save Coloradans approximately $38 million a year. Think of how much Coloradans will save on medication and insurance costs if the board is allowed to keep going. Their work will continue to meaningfully lower what Coloradans pay for their medications and will also provide relief from insurance premium increases for families like mine. When you can't afford the medication you need, patients risk their conditions worsening and needing more serious medical interventions. More than once, I have ended up in an emergency room for life-saving care after I couldn't afford routine care or medication. Fighting a disease is hard enough. Please wrap up. The cost of care makes it unspeakably harder. Please vote no on Senate Bill 140. Thank you so much. Okay, committee, do we have any questions for this panel? Representative McCormick.

Thank you. Yes, thank you. So if the law only applied two prescription drugs that were only approved to treat one rare condition, approximately 50% of the drugs would still be excluded. So that would take it from about 67% exclusion now down to about 50%.

McCormick, did you have a follow-up or anyone else?

It's a different question? It is. Okay. Representative Frey. It's fair. Go ahead, you've got the floor, McCormick. Oh, okay. She deferred to you. Thank you. I wanted to ask about this fear that may not be real, that if a pharmaceutical company was threatening to withdraw from the market I heard from Ms Prey online but I ask Ms Cummings this question What types of mitigation measures are there at DOI to be aware of that dynamic starting to happen, and what could you do about it? Ms. Cummings. Thank you, Representative. Thank you, Chair. So there's multiple mechanisms. There's some that are broad and some that are patient-specific. So some of the broadest mechanisms, the first is asking the manufacturer. So if an upper payment limit is set, there is a process that the board and staff on the board's behalf will be undertaking, specifically for the embryo UPL, to ask the manufacturer, do they plan to withdraw? We do have our doubts, particularly because we believe that it would require withdraw from more markets than just the ones where the UPL applies. but that is kind of one of the first mechanisms is just engaging with the manufacturer to ask. The second mechanism would be the board, through its rulemaking, could revisit the rule if they're hearing access concerns to adjust or amend the UPL. I would say during the EMBRL UPL rulemaking process, there were multiple opportunities for manufacturers to engage, and including a submission guide that was created for different supply chain entities to say, hey, what would your concerns be with the dollar amounts that are being looked at? And the board did not receive any concerns or feedback around the numbers that were being discussed. So through rulemaking is another kind of area. Then last but not least is if a singular patient, as they are looking to access their drug, believes that they are not able to access the drug because of the UPL, They can go through a process that already exists at the division. It's already something that DOI-regulated plans and their patients can do. It's called an expedited review. And so this would involve the patient, their doctor, and their insurance company meeting. And if it is determined that they need this drug, then payment above the UPL would be authorized for that patient. Thank you. Representative Furet. Thank you, Madam Chair. To the former PDAB board member, I'm wondering, You had mentioned that you had done some changes within the PDAP board to make the rare disease patients voice being heard. But the past two years, I've heard from members that they want a seat at that board. Can you just elaborate as to why we're not expanding the PDAP board for rare disease patients? Ms. Cummings. Absolutely. Thank you, Representative. Thank you, Chair. So one of the – I'll kind of answer in two parts, and hopefully we'll get at your question. So the first is there are new requirements on how the board needs to engage rare disease patients during the first step of its process, the affordability review. I would say that has not actually been put into practice yet because the board hasn't had their second round of affordability reviews yet. So we anticipate that will happen later this year. And so that will be the first time that these new opportunities and not only opportunities, but requirements to engage rare disease patients will be in place. So that is kind of one of the ways that we anticipate greater engagement with rare disease patients. And then to the second point of the board composition, I know I think I'd have to take a look. I believe that there was a report from this past July kind of saying if the legislature wants to take a look at the composition and the requirements for the board, including a potential patient representative, that that's something that we would leave to the legislature to consider. Can I follow up, please? Thank you. We'll go online to Rip Bradley. Go ahead Rep Okay Thank you For DOI I was just wondering if the list of drugs they using is that the parameters that we passed with legislation a few years ago Who's that? Is that for Ms. Cummings? I believe so. Go ahead. Thank you, Rep. Bradley. Thank you, Madam Chair. So the list, yes, the list I'm referring to would be referencing when we're talking about how many drugs would be excluded or how many drugs were initially eligible. That is from the statutory criteria for which drugs are eligible for review, in which in the first round in 2023 there were 604 drugs that were eligible. Thank you so much. Rip Frey. Thank you. Thank you. Is it required by legislation for us to change the board composition of PDAB? Thank you for the question. I don't know if it's necessarily required, but that's just kind of the current structure in the statute that is laid out has specific requirements for the educational background for board members. So I think it would require, necessitate a statutory change. Thank you. Thank you. Committee, do you have any further questions? All right. See you then. We'll move on to our next panel. Thank you. We'll go ahead and bring up the support panel. Amanda Boone, Christy Keebler, Perry Jousey, and Stephanie Jaramillo. Please come up to the front. Okay, we're going to start with the people in the room. so we will go ahead and start from my left this way i know a fighter t-shirt i like and state your name and who you represent you have two minutes hello my name is stephanie jadimio and i'm a rare disease mom i'm here today to ask you to support the colorado sb 140 i want you to picture this for a moment you start having symptoms let's say chronic migraines like my son caden did at seven. At first, you think it's something manageable, but then you are hit with a diagnosis, a rare genetic condition, in our case, neurofibromitosis, and behind those migraines is a brain tumor. Now, imagine being told there's no standard treatment options. Radiation isn't even an option because it could make the tumor grow faster. Your choices become incredibly limited. Chemotherapy to try to shrink it, surgeries to try to debulk it, and lastly, potentially loss of his beautiful blue eye. This is what rare disease families live with. For years, we have lived in that space, managing symptoms, hoping for stability, but knowing there wasn't a real solution. Prayer is essentially our only option. We had experienced the dreaded watch and wait and hope that no tumor growth as my young son underwent many medical procedures. Imagine being in a position where there is nothing you can do for your child. No options, no roadmap, just fear and waiting in the uncertainty as your son is being prodded by doctors. And then about 10 years later, something changed. There are now drugs in development, targeted treatments for the exact tumor my son has. For the first time, families like mine have something they didn't have before. hope Not just hope to manage symptoms but actually to fight this disease Now I want you to imagine something else Imagine being told that even when this treatment exists access to them is uncertain That policies meant to address affordability might unintentionally make it harder for the patients like my son to receive the very medication designed for him. For rare disease families, access is everything. We do not have a backup option. We do not have alternatives. Go ahead and finish your sentence. When progress happens, we need to access it. Please support this bill. Thank you so much. We'll move on to you. Please state your name, who you represent, and you have two minutes. Thank you. We still can't hear you. Is it green? It's the tiniest button there. Thank you, Madam Chair and members of the committee. My name is Perry Jousey, Executive Director of the Colorado Chapter of the National Bleeding Disorders Foundation, and I represent approximately 2,000 diagnosed patients in our state. Our chapter formed in 1974. Before this, life expectancy for people with hemophilia was in their early 20s. Today, thanks to modern therapies and advocacy, life expectancy maps to the general population, and patients live drastically improved lives with minimal risk of physical debilitation. But that can change in an instant when access to treatment is threatened. And make no mistake, this is threatened when a government entity deems it unaffordable without consulting patients directly. We are here in support of SB 26140 because it reflects a thoughtful, patient-centered approach to exempt rare disease from PDAB review. This effort follows legislation enacted in progressive states that have made this distinction. Today, we can take a similarly pragmatic and patient-informed approach, one that addresses cost concerns without putting the most vulnerable patients at risk. This bill signals a willingness to listen and recognizes that one-size-fits-all solutions do not work in healthcare. Patient organizations like ours bring lived experience, real stories, some of tragedy, some of triumph. Let's give patients triumph today and assure them we won't return to preventable tragedies of hospitalization and disability for those who depend on these medications every day. These are immense costs that are not being at all considered by this Prescription Drug Affordability Review Board. Colorado has an opportunity here to demonstrate leadership not just in addressing costs, but in doing so in a way that's balanced, forward-looking, and grounded in patient reality. This bill received bipartisan Senate support and is endorsed by such backbone organizations as the Chronic Care Collaborative. A policy approach that incorporates these voices is not only more compassionate, it is more effective. We urge your support today for SB 26140. Thank you. Thank you so much. Christy, please state your name and who you represent, and you'll have two minutes. Good afternoon. Thank you, Madam Chair. My name is Christy Kibler. I'm the CEO of Lupus Colorado. I advocate every day for people living with lupus, including children facing the ultra-rare forms of this disease. I want to start by grounding this conversation. Affordability is a real problem, and patients feel it every day. But affordability alone is not enough. Access and outcomes matter just as much, especially for the community that I serve. Rare disease patients experience the healthcare system differently. Their conditions are complex, their treatment options are limited, and their margin for error is incredibly small. that makes them more vulnerable than most. When we apply broad, size fits all policies meant to lower costs, there's real risk that the people on the margins are the ones who get left behind. I want to be very clear about something. We are not worried about manufacturers leaving the market. That is not what keeps my community up at night. What we are worried about is losing access at the point of care. This isn't about manufacturers, it's about providers, infusion centers, and independent and rural pharmacies that are already operating on thin margins and simply cannot absorb losses on these drugs. We are already hearing from infusion centers that when the embryo UPL takes effect, they will no longer be able to offer it as an infused therapy because it creates an $86 loss on every infusion. So instead of lowering costs for patients, it removes their ability to get treatment. And even then, any savings are sent back into the system without any guarantee they will ever reach patients. When I brought this to the board at their last meeting, my concerns were dismissed because they can't control the business practices of infusion centers. I think it's important to acknowledge how these decisions are being made. The Emberl UPL was set at $600, and we were told directly that it was because the chair liked round numbers. For patients whose lives depend on these therapies, that's deeply concerning. And stepping back, we are also concerned about the broader approach. Government price setting does not solve for accessibility. It does not ensure a drug is available to a community and that a provider can administer it, or that a patient can actually receive it when they need it. Thank you. Thank you. We're going to go – I was going to let you finish. Do you have, like, one sentence left? Sure. What this bill does is to create space for lawmakers to exercise oversight and get this right. We need to exempt rare disease drugs while that work happens, so we're not putting the most vulnerable patients at risk. We urge your support. Thank you. We'll move remote to Amanda Boone. Please unmute, state your name, who you represent, and you'll have two minutes. Hello, good afternoon, Madam Chair and members of the committee. My name is Amanda Boone. I represent CF United and myself. I have cystic fibrosis, and I was on the first drug. I am on the first drug that was reviewed by PDAB in Colorado. First, I want to thank our sponsors. We know this topic is polarizing. I don't disagree with the opposition that drugs are too expensive. They just haven't been through a review. I have. The safety net that opposition says patients have is not accurate. Have you seen a Trikafta commercial? Rare disease manufacturers do not use ads to reach patients. Rare disease manufacturers do not use ads to reach patients. I do not consent to be used as a bargaining chip to reform health care in our state. I'm an innocent pawn in the war between government, pharma, insurance, and insurance companies. Many of us who have actually gone through a review have been deeply impacted and traumatized by this process. We're asking you to protect us from a cost containment experiment that does not save money, not for patients and not for the state. This does not lower insurance premiums. Avelier did a study with health plans and concluded that they anticipated that premiums would actually increase if UPL is implemented. Most respondents said that pharmacy reimbursement could decrease. We are sick and tired of having to fight to protect access to medications that keep us alive. For you, this policy is probably nuanced, but for me, it has been a constant, real, and personal threat for the past three years. I have spent that time researching this policy, working with stakeholders, and doing everything I can to prevent this from happening to someone else, because this is really what it is. It a threat CF patients are used to fighting I am extremely lucky I have lost many friends far too soon I waited 37 years for a miracle My prayers were answered when that medication came out If I lose access, my health will rapidly decline back to when I was in stage CF. That's a nice way of saying I was dying. Today, I pay nothing out of pocket for this medication, but before it existed. I spent my life in the hospital with my son coming to visit me. If I lost my drug, I would need Medicaid to survive. Would I get Medicaid? I don't know. I would need a transplant. Each outcome far more expensive to the systems. Patients are not allowed to serve on the board, and today we're asking you to hear us. We were told by DOI that if changes were needed, we had to come to you all through legislation. We were told, write your own bill. We did it. This is that bill. Please support as currently written. I take threats to my life seriously and I have spent fighting 40 years for a disease that was going to take me and it did not. I'm a fighter. Thank you. Thank you so much. Committee, do we have any questions for this panel? Okay. Seeing none, thank you so much for your testimony. I appreciate it. It's good to see you, Christy. Okay, we're going to bring up our next panel, Priscilla Vanderveer. Jen Reinhart, Jesse Shea, Ryan, and Ryder Boone, and Bridget Dandera. Please come up to the front. Thanks, Dusty. Rep. Johnson. I said, thanks, Rep. Johnson. Okay. We are going to start from my left and go to the right. It's good to see you. Please state your name, who you represent, and you have two minutes. It's a little, if you could push, it's the tiniest gray button there in front. It's in front of the plug. You know, we have that sign there, but still nobody sees it. It's crazy. Oh, I know. I just can't read. Well, nobody still sees the thing. But thank you so much. Go ahead and state your name and who you represent. You have two minutes. Hi, my name is Bridget Anderosseret, and I am with Advocates for Compassionate Therapy Now and the Colorado Rare Disease Coalition. I have been heavily involved in the PDAB and PDAC since late 2022, and I've only missed a handful of meetings. I went through the drug reviews for Embryo-Cosentix and Stellara. The PDAB process itself is in its infancy and still being developed. During the first five reviews, several red flags have popped up, which is why we are asking for these exemptions. We saw inconsistent data interpretation, haphazard UPL sitting, and the board actually became hostile to any patient that expressed concerns. We need to exclude rare disease patients and work this process out before we move forward in treating their, in reviewing their diseases. We just heard PBMs explain how they negotiate the rebates in the formulary determination, and the UPL doesn't take that into account at all. And by your own civic information nine of the top 11 drugs that were heavily utilized actually had cheaper generic options Just to give you an example ExpressGrips charges TRICARE 11 times the amount that Cost Plus Drugs has lisinopril So I think there are plenty of ways we can save money, but we need better tools, we need broader tools, and we need to work out the formularies. the UPL doesn't change what my copay is and it doesn't mandate that I have continued care if I'm on a working drug there's no formal appeals process except the lengthy DOI process after I've exhausted all of my other processes with my insurance company for someone with a rare disease this could be their life I absolutely do not disagree that we have an affordability issue and most are unfortunately under the impression this impacts out-of-pocket costs and premiums. The upper payment limit for EMBRL is $4,800 a month. I don't know any uninsured or underinsured person who can afford that. Thank you. Thank you so much. We'll move on to my... State your name. We represent two minutes. Good afternoon, Madam Chair and members of the committee. My name is Dr. Jessie Shea. I am the Executive Director of Chronically Informed and an expert in the experience of patients with chronic health conditions, including those with rare diseases. I am here today to testify in support of Senate Bill 26-140. Thank you for your time and for truly listening. I know you have had lots of conversations about this bill, and that volume speaks to the absolute desperation of the community I serve. Rare disease patients already wait years for a diagnosis, only to face a staggering lack of treatment options. Implementing upper payment limits will add a final, insurmountable barrier to care. Upper payment limits will force pharmacies to stop stocking essential medications they can no longer afford to carry, while triggering aggressive utilization management for patients like step therapy and non-medical switching. It directly threatens the survival of underserved communities who lack the resources to navigate an increasingly restrictive medical system. I am here as an expert witness to testify that patient voices are being systemically silenced and their justifiable fears are being ignored. Patients, many immunocompromised and facing grueling medical challenges, have risked their health to be here today and plead for their lives. They are telling you that upper payment limits will be catastrophic. Please do not ignore them. The stakes are too high to look away. I agree that medication is inaccessible, but this is not the solution. This will have detrimental, unintended consequences, and patients will be collateral damage. Don't let groups who say they represent patients convince you that patients' lives are worth the gamble. I implore you to listen to the actual patients. Thank you for your time. Please support Senate Bill 26-140. Thank you so much. We'll move on. Heidi, please state your name, who you represent, and I understand you're reading testimony. Thank you. Good afternoon, Chair and members of the committee. I'm here on behalf of Jen Reinhart, who asked me to read her testimony. I'm a mother to a child with a rare disease, and I'm here because what Colorado is doing right now is dangerous. My daughter, Maya, has cystic fibrosis. When she was born, we were told there might be a treatment in 10 years. It took 18. 18 years of watching, waiting, managing decline, and hoping science would catch up before it was too late. And when treatment finally came, it didn't just help, it saved her life. So I need to be clear we cannot afford policy mistakes because my daughter life drug Trikafta was the very first one reviewed in Colorado I tell you that because it was horribly traumatizing for our family. For months, we lived with uncertainty, not knowing if we would lose access, if she would go back to a fatal illness. We were told the process is safe, but there is literally a slide in the process that says that the PDAB, if access is lost, families will receive 180 days notice. Think about that. You're telling families that the only thing keeping their child alive could be taken away, and they're given a countdown. And this is happening in a system that is not fully built. The board has confirmed using data inconsistencies. They have dismissed concerns of out of scope. They have ignored recommendations from their own advisory committee to not review rare disease drugs. This is not a validated process. It's an experiment. And who did they choose to review first? A rare disease drug. Not something with alternatives, not something patients could stop taking. A drug with no backup plan. This is not a coincidence. Rare disease drugs are disproportionately targeted because they serve small populations in their higher costs. And these patients have no other options. The patients decline, lung function drops, hospitalizations increase. and in diseases like CF, people die. And when that happens, the cost shifts to hospitals, to emergency care, to Medicaid, to taxpayers. Because being sick is far more expensive than staying well. So do not test an unproven system and please vote yes on this bill. Thank you. Thank you so much. Okay, we're going to move online to Ryan and Ryder Boone. Please unmute, state your name, and who you represent. And we lost the one with both of you because we've seen you twice. So go ahead, Ryan. There. Okay. Whichever way you choose to do it. We can see both of you there. I'm going to let Ryder go first. Okay. Ryder, just state your name and tell us who you represent. You have two minutes, dear. Hi, my name is Ryder. My mom and my dad both have cystic fibrosis. When I was five, I found out my parents were going at my school. Can you get closer to the microphone? We could hear you, and now we can't hear you. Okay, try and talk now, because we heard you fine, but then you kind of went away. Okay, can you hear us? Well, I can hear you. Can you hear me? Yep, there you go. I can hear you now. But I can't see you. Okay, wait. That's okay. One sec, let me... Here we go. Sorry. It's loud. It's funny. Okay. Here, I'll start again. My name is Ryder. My mom and my dad both have cystic fibrosis. When I was five, I found out my parents had a really rare disease. no one at my school even knew what it was. When I was little, my mom was really sick. I still go to the hospital with her sometimes. I was just there last Sunday. But then a new medicine helped save her life. I think that's amazing. Science is actually my favorite subject. I don't understand everything that was said today, but I do understand this. Inside, You don't risk people's lives to test something you're not sure about. Please don't take that risk with my parents and protect rare disease patients. Thank you. Thank you. That was excellent. We'll go ahead and move on to Ryder. So it's actually me. Do I have it backwards, Ryan? Okay. Thank you, Ryder. You're good. Good afternoon, chair and members of the committee. My name is Ryan Boone. I'm speaking today as a rare disease patient, a caregiver, a father, and a husband. Every day, families like mine fight battles you don't see, managing complex conditions, navigating care, and holding on to the medications that keep us alive. What we should not have to fight is the system meant to help us. Three years ago, the life-saving drug Trikafta, the drug that my wife and I rely on, was up for a review by Colorado PDAB. We moved to Colorado for care at National Jewish in Denver. When Trikafta was reviewed, we panicked because we were told the manufacturer would likely pull out of Colorado if an upper payment limit was set. Before Trikafta, our diseases were progressing quickly. My wife was being evaluated for a lung transplant. We didn't know if we would live to see our son become an adult. I was facing the very real possibility of becoming a widower, raising my son alone while fighting my own disease. That's not theoretical. That is real. That is the fear and trauma rare disease families live with when access to medication is threatened. Trikafta changed our lives. It slowed our disease. It gave us time. It gave us hope. It gave my son his parents. You've already heard the arguments around cost control today, but I ask you to pause and consider this. If a policy is intended to help patients yet risk life-staining treatment away from the very patients it's supposed to serve, and there's no guarantee that savings will be passed on to the patients, who's it really helping? This is where your decision matters most. This bill is not about who is right. It's about doing what is right. If there is even a chance that these policies could restrict access to life-saving drugs with no alternatives, then the risk is being placed on the most vulnerable patients and on families like mine. My son is here today because this decision affects him too. Please protect rare disease patients and support this bill as written. Thank you for your time. Thank you so much. And I'm going to go ahead and call up because we have two more people that are remote, Jessica Myers and Sabrina Walker. If you can go ahead and bring them up remote. There we go. I see Jess Myers, so I'm going to take it that you are Jessica Myers. Go ahead, state your name and who you represent, and you have two minutes. Wonderful, thank you. Hello, I am Jess Myers, and I am the Director of Advocacy at the U.S. Hereditary Angioedema Association. We are a nonprofit organization that supports people living with hereditary angioedema, or HAE. It is a rare and potentially life genetic disorder that involves reoccurring attacks of severe swelling in various parts of the body including hands feet stomach face and throat This is a condition that I also personally live with Any swelling attack in the airway can restrict breathing and become fatal. Access to the FDA-approved treatments for HAE is life-saving for many. Due to recent breakthroughs in medical science, HAE is no longer a death sentence and can be managed with appropriate treatments. HAE therapies have been proven to eliminate disability and dependency, allowing a relatively full and productive life. People with HAE, however, require constant access to lifesaving medicine and care. Moreover, physicians must be able to prescribe the full range of HAE treatment options because of the significant variation in effectiveness of individual therapies that is seen in our patient community. For those reasons, we strongly support SB 140. The HAE and orphan disease community would suffer grave consequences without a carve-out for rare diseases and plasma-based therapies that predict our unique circumstances. We are also concerned that cost-saving measures implemented through the Colorado PDAB would not directly result in cost savings for those who need it most, patients. Setting an upper payment limit for specific medication may prompt insurers to make changes, such as reshuffling formularies, adding prior authorization requirements, or implementing step therapy protocols. These tactics all put further burden on the patient, oftentimes delay or deny the access to lifesaving medicines altogether, and do not provide any relief for out-of-pocket costs for patients and their families. By supporting this legislation, you would protect people with HAE and other rare diseases from the hurdles that prevent them from accessing their lifesaving medicine. We would thank you again for the opportunity to share our support for SB 140 and ask that you vote yes on this bill. Thank you so much. and let's see, do we have Sabrina Walker? No, she's not online. Okay, is there anyone else that would like to testify in opposition or support? Please come up to the front. Okay, seeing none. Committee, do we have questions? Representative Barone. Thank you, Madam Chair. And this is for anybody on the panel that wants to answer my question. Am I correct in my research that the rare disease community really wanted this exemption when the PDAM was first created? I can take that. Yes, the rare disease community did want this exemption. The Prescription Drug Affordability Advisory Council also recommended that they not review rare disease drugs until the process was better understood and outcomes were better understood. Thank you, Bridget. Panel, do we have any other questions? Okay. Seeing none, thank you so very much for your testimony. It's very appreciated. Okay, sponsors, with that, please come up in the witness phase. Witness testimony is closed. Who would like to start Do we have any amendments No. No amendments? Okay.

Thank you. Go ahead.

I don't need the longer title. Sheila would be fine. But go ahead.

want to make sure that the committee doesn't have any amendments okay seeing none thank you Amendment phase is closed. Representative Gilchrist.

Second. Second. Seconded by, was that for Ray? Hammer? Johnson? I'm just teasing you.

It's been properly laid over and seconded. We do have to. Okay, would you like, yes, we'll, sorry about that. Let's back up and do closing comments. We've, thank you. Committee? We are good, but if the committee would like.

Thank you, everybody.

Other comments?

Anyone else? Closing comments? All right. Thank you, Mr. Shadoon.

Representative Zabaron.

Redfield. Yes. Bradley. Yes. English.

At the sponsor's request, yes. Johnson. Yes.

Wook. Excused. Gilchrist. Yes. Madam Chair. Yes.

Thank you. And with that, that concludes HHS Committee. Thank you.