 But our first witness is Senator Lyons. There she is. Okay. As we thought we might, we have found there is an awful lot of interest in this bill as well. So that's Dr. Leonard. Okay. So Senator Lyons, you're the sponsor. And my intention is once we've looked at the insurance impacts, I'm going to relinquish it to help it welfare. But insurance turned out to be a really big issue or leaves a lot of interest. So we're going to walk our way through that and then to you and I and our three co-conspirators down the hall. So we have a majority right here. So go for it. Yeah, we do. So anyway, you know the time crunch. As fast as you can tell us what your purpose is. Very briefly, I will share with you how important S247 is. This is a bill that we did have in our committee, a last session and we did pass it out to the full Senate and eventually it was on the last day of the session it went over to the house, but it was never, it was a slightly different bill with more sections and more provisions. This bill really deals more as you now know with long-term care insurance and life insurance. We know that in 2008, the genetic information non-discrimination act was passed at the federal level, protecting health insurance. So that we are under that umbrella, but we also know that with the onset of things like ancestry and 23, whatever the 23 you and me is. 23 and me, my sister had ours done. I'm not a lyrish. And people believe that looking at individual chromosomes might predict something about who we are. And we know that in the past we've looked at single, trying to understand single gene inheritance, color of eyes for example, but as time has gone on, we've seen greater complexity in our genetic expression. And I should share with you that I am a professor of biology. I have taught cell biology and immunology for many years. So I have my feet on the ground with this one, but I will allow for Dr. Leonard and others to speak to the genomic medicine that's going on today and how very personal it is becoming and how much it can tell us about both prevention and treatment of diseases. But if that information is shared and becomes more publicly shared then their concern is a very real concern about people not willing to share genetic information even with their medical providers or with laboratories when it could be to their advantage. So I believe that this bill is an important one. It will allow for folks to sign on whenever their genetic information is being shared and utilized particularly in the medical environment. There's a section in the bill that provides for that no one's genetic information can be shared or utilized without some informed consent. So those things are all very important to us because our genome is us, it is us. And we know since we've learned greatly since the 90s and I've done research in some of this area how much the environment, both the chemical environment and the social environment will influence genetic expression. So there is a lot embedded in the bill. I will not talk any further, but I think that allowing people protection of their own genome and non-discrimination is critically important and I will end it there. Okay, thank you. I wanna make sure we have time for all the other witnesses. Does anyone have a time constraint? A hard, okay. This is normally when I do the non-professionals because it's snowing outside, but we're all zooming. So I'm gonna go on to Emily Brown who is director of rates, there you are. Okay, Emily, director of rates and forms from DFR, thoughts? Hi, so for the record, Emily Brown, I was the director of rates and forms. I'm now the director of insurance regulation at DFR. Oh, we gotta update our list. Okay, fairly new, so that's fine. Yeah. So at this point in time, the department does not support or oppose this bill, but what I thought it might be helpful to do and I'll let you obviously decide is if I walk through what our current law allows or requires. Yeah, that would probably be a good foundation. Yep, okay, all right. So currently, and when I'm talking, I'm talking about all insurance. So I know that Senator Lyons mentioned life insurance and long-term care. What I'll be talking about is really the requirements for all insurance at this point because it is all currently grouped into one section of our law. So as of now, insurers cannot use any medical information, including genetic testing, if it does not relate to the risks that is being insured. So the burden is on the insurance companies currently to prove that if they are using information, your medical record, that it actually is having an impact on the risks that they are assuming. Another piece of Vermont law, which I think is important to this discussion is that insurers are not allowed to require any individual to undergo genetic testing in order to procure insurance. And then they're also not allowed to use any of a family member's genetic information unless it's in the policyholder's medical file. And I do believe that Vermont does currently have one of the strongest or restrictive genetic testing laws in the country. And so I think I'll just leave it there if there are any questions about how the current law is operating. So currently, you cannot use genetic information you cannot require a genetic test or anything. Exactly. If one has been done and it's in your medical records, that either you or one of your siblings has the female gene that's connected with ovarian and other female cancers, that's in your medical record and you are going for health or perhaps life insurance, then that information could be used because it impacts the risk and that influences your rate. If we didn't allow that to be used, does that mean that the pool as a whole would, that that risk would get spread out? Yeah, so just one clarifying piece before I answer your question. So for major medical or comprehensive health insurance, currently they are not allowed to underwrite. So if you are purchasing a plan through your employer or on the exchange, they are not allowed to underwrite you. So they can't look at your medical information currently and reject or raise your premium based on if you have some genetic predisposition. But so what it would essentially do or what the risk is, is that if an insurer, for instance, a life insurer doesn't have access to information, maybe you've had a genetic test and if they aren't allowed to access that information, that could then potentially lead to individuals who may know that they are at higher risk of something than going and purchasing a policy, maybe for a higher amount than they would if they didn't have that information or purchasing a policy when they wouldn't have previously without that knowledge. So that is a potential outcome. There's obviously, and I'm sure you'll hear about it later from the other witnesses, but there's also the risk of maybe people not undergoing genetic testing if they feel like they can't then procure a life insurance policy. And in this instance too, I do believe the bill is modifying not only for life insurance and long-term care, but it would also put restrictions on the ability of, for instance, disability insurance companies, I believe, sometimes use family medical history to determine your insurability. So I believe that the impact of this would extend beyond the long-term care and life insurance market in effect. So there's disability. Yeah. Okay, maybe workers comp. All right. Questions for Emily at this point. And Emily, is there a chart somewhere with what different kinds of insurance are allowed to consider? Yeah, so right now, and are you just talking about for genetic testing or are you talking about generally? I think medical records and genetic testing, but if you've got it just generally, that might be helpful for us to have just to know where we're starting. Yeah, and so currently as it stands, health insurance, major medical health insurance is the only line of insurance in our state where you cannot use an insurance medical record to determine insurability or underwriting or the premium that they'll be charged. Conditions, yeah. Exactly, and in a Medicare supplement, but that's kind of a different situation. Okay, yeah. All right, but you can in other insurances. All right, but you can't require that the test be done. Exactly. Okay, any questions for Emily at this point? I am not seeing any, so I'm gonna move to Jill Remick. I'd say welcome back, not Remick, this is Rickard. I am gonna have trouble with those names. I should never have them both on the same agenda. Welcome back Jill Rickard, new hat. It wasn't too long ago, you were here in another job, but welcome and tell us where you are now and what you'd like us to hear. Thank you, Madam Chair. I actually used to get emails for Jill Remick and she used to get them for me, so. Yeah. So thank you for having me. My name is Jill Rickard and I am now representing the American Council of Life and Chairs. I have with me as well, Dr. Dave Rangicherry who serves as a medical director on behalf of ACLI and he will be able to answer any. I'm glad you pronounced his name because I just massacred Mazer, so. Yeah, Rangicherry is, or you can call him Dr. Dave. Okay, I can do that. So he can answer any technical questions you have about life insurance and writing. So a little, the American Council of Life and Chairs is the leading trade association driving public policy and advocacy on behalf of the life insurance industry. 90 million American families relying on life insurance industry for financial protection and retirement security. We have 280 member companies and they represent 94% of industry assets in the US. Each day, life insurers pay out $3.6 million in life insurance and annuities to Vermont families and businesses helping Vermont to secure the things that matter the most through all stages of life. Did you just say $3.6 million a day to Vermont? No, that's gotta be. I'll get back to you with the correct figure. I apologize, that's what I wrote down, but you may be right that it's not. I know, it just, it sounds high, but. It does, you're right. Let me check on that. You may have some expenders there, so okay. Yeah, go ahead and check that one. Thank you, the ACLI opposes S247. As Director Brown explained, unlike health insurers, life insurers have only one opportunity to evaluate a person's risk before issuing a policy that will remain in place for the person's lifetime, which could be 30, 40, 50 years. Once a policy is in place, a life insurer cannot cancel it or raise premiums because of changes in a person's health or because of subsequent test results. For that reason, it's very important that life insurers have access to an applicant's complete and accurate medical record, which could include family medical history and genetic information. Insurance, as you know, is based on a relatively simple concept. A group of people can collectively bear costs that would be too great for one member of the group to handle on their own. Grouping people together makes it possible for an insurer to offer affordable protection against financial loss. As Senator Bray correctly noted after last week's walkthrough, this bill would create an opportunity for adverse selection. If genetic information is available to life insurance applicants, but not life insurance underwriters, then people with a high risk of disease may be more likely to purchase insurance and conversely, people with a lower risk may be less likely to purchase insurance and people masking a higher than average risk based on their genetic test results could purchase policies at the same price as people with a very low risk. As a result, the risk experience in the insurer's pool could be altered and this could ultimately destabilize the insurance pool and the market. To illustrate a basic example of adverse selection is if a smoker claims to be a non-smoker on their life insurance application and receives the non-spoking risk classification, if this happens often enough, then too many smokers get added to the non-smoking risk pool, then the premiums charged to the pool may be too low to account for the increased mortality and morbidity risks due to the number of smokers. The pool may eventually become financially unsound because the insurer is not collecting enough premiums to pay the higher rate of claims. Adverse selection is the greatest threat to insurer's ability to underwrite and price appropriately. Too many instances of adverse selection are likely to drive up costs for all future consumers and could affect the availability and affordability of insurance products. Life insurers ask is simple. They want access to the same information that the applicant has at the time of application. They do not view genetic test results as separate and apart from a routine medical file and they also don't view test results as definitive. Test results do not dictate the issuance or non-issuance of a life insurance policy. Life insurers take a holistic approach in the underwriting and they consider a wide range of factors, including the steps the person might be taken, taking to manage their health risks. In fact, genetic information could benefit a consumer in life insurance. For example, a person with heart disease that's taking the appropriate medications may pay lower rates, pardon me, than a person is who is doing nothing to address their health risks. In many cases, knowledge of a genetic condition encourages people to take a more active role in their personal health, which may in turn place them in a lower risk or a better risk category. Life insurers are in the business of issuing policies and want to provide life insurance products to as many people as possible, but also want to price those products accurately and make them as affordable as possible for all consumers. Today, 93% of people qualify for life insurance coverage the first time they apply. Vermont's existing laws regarding genetic testing already provide strong consumer protections and some of the strongest restrictions in the nation. I won't go into those as I was planning to do because Director Brown provided a good overview, but I do want to mention with respect to the privacy of genetic information. Life insurers do not share or resell genetic information to third parties. Our members take consumer privacy very seriously and abide by a wide array of federal and state privacy laws protecting not just genetic test results but all health information. During last week's meeting, the committee asked whether other seats been posed similar prohibitions on the use of genetic information. In our neck of the woods, Connecticut was mentioned. Connecticut did enact a law in 2021, but that law is almost identical to the provisions already existing in states in Vermont's statute. The Connecticut law prohibits insurers from using the results of direct to consumer genetic testing went 23 and B without the informed written consent of the applicant. We don't oppose that. It also prohibits underwriting based on a requirement of the applicant to undergo genetic testing or the results of a genetic testing of an individual's family member if they're not contained in a medical record, which is what we have in Vermont law. I also want to touch on underwriting based on family medical history. As written, we read the bill as prohibiting the use of family medical history and life insurance underwriting. Underwriting based on family medical history is a longstanding practice in Vermont and in all other states and no state currently prohibits this. However, I also understand based on the walkthrough last week that the carve out in section three of the bill, which would be added to eight BSA 3702 is intended to allow life insurance to continue to underwrite based on family medical history. So long as there is a relationship between that history and the cost of the risk undertaken. If that is the intent, then to accomplish this purpose, the carve out also needs to be added to the other relevant sections of law. In addition, we would request this exemption be permitted to apply to longterm care and disability income insurance. Finally, I want to mention as I sort of briefly touched on direct to consumer testing, such as 23 and me, the bill would prohibit insurance from insurers from requesting, requiring purchasing or using information obtained from these BTC genetic testing without the informed written consent of the individual who's been tested. We have no issue with this provision. Insurers do not use these test results nor do they underwrite or they don't access the test results nor do they underwrite based on them. ACLI members are committed to a robust and competitive insurance market that offers a variety of products that are affordable and meet consumers insurance needs. Life insurance companies have been able to provide affordable insurance coverage because applicants have shared with consent their complete medical records. It only makes sense that if a life insurance company is going to make a long-term promise that it knows an applicant's true health condition. Finally, Vermont consumers have long benefited from accuracy, transparency and confidentiality in the underwriting process. Prohibitions like those contained in S247 would result in higher prices and fewer choices for Vermont consumers. Thank you for your time and I would be glad to take any questions or to pass it off to Dr. Rangitari as well. Okay. Dr. Rangitari, do you have anything to add at this point? I would if you don't mind. I think there's several good points. I would if you don't mind. I've heard several good points, exactly. I think that maybe the two other things that I would want to make clear that have come up so far on the first one and this is probably the number one, two and three question that we get when these issues arise. Well, why can't you just maybe raise the prices a little bit and spread that risk around the pool? What I would want to make clear is that in this particular case and the way that this particular bill has been written and insurer would not be allowed to limit the amount that is applied for. So if an individual would normally apply for say 300,000 but now they knew they had a markedly reduced life expectancy, it would make all the sense of the world for that individual to apply for 3 million. Well, wait, why not stop there? Why not 10 million, 30 million? That kind of risk cannot be spread around but let me make it also more clear than how extreme of a bill it would be to completely ban the use of predicting diagnostic testing genetic testing in Vermont. This bill of course would not be limited to the residents of Vermont and what does build in any single person from the Northeast or honestly, literally the entire country would be able to go in to get into Vermont and get a policy that they would not be able to get in any other state in the union when you consider that addition of family history in particular. And so what this bill would be asking for were the residents of Vermont to shoulder the entire burden of the nation's unsustainable policies there. Again, not limited by a face amount. So for that, I just wanna make it as clear as possible or not exaggerating that this has real threats to the availability and the pricing of life insurance within Vermont. The third point that I would just wanna make briefly is forget about all the, for a moment about the financial impacts. I wanna speak to it for a moment from the fairness impact because I think if you just look at it from the outside well, boy doesn't really kind of seem fair to use genetic information. What I would wanna make clear as a medical director every day, we see applications for people with all sorts of diseases that they didn't ask for. We see people with multiple sclerosis. We see people with genetic information and we see people say for example with spinal cord injury that has nothing to do with genetic information. We make a commitment, a pledge to not play favorites in terms of medical disease, right? We go by the life expectancy and we don't pick and choose in terms of who we would apply it a treatment for. We don't make those decisions around a fairness. So with that, thanks very much for the opportunity and I'll happy to also to entertain any questions. Okay. Any questions for Jill and Dr. Ranjikari at this point? All right. Again, I think we're all on a very steep learning curve here. Some of us heard from, I believe Dr. Leonard last year. I think, yeah, you were in health and welfare. I think we, so, but the rest of this committee has not. So Dr. Leonard, I'm gonna go to you and then Dr. Wilden. Thank you, Senator Cummings and members of the Senate Finance Committee. My thanks to the senators who sponsored S247, including Senator Hardy from this committee. My name is Deborah Leonard. I'm here today to ask for your support of S247, a bill that would protect Vermonters from discriminatory practices based on their genetic information. To introduce myself, I am the chair and a professor of the Department of Pathology and Laboratory Medicine at the University of Vermont Health Network and the Robert Larner College of Medicine at the University of Vermont. In addition to my medical training, I have a doctorate in molecular biology, which is the study of genetic material used to control cell and body functions. My medical specialty is called Molecular Pathology or Genomic Medicine, which focuses on testing of genetic material, specifically DNA and RNA. I won't give you the longer technical names of those for medical purposes, including for cancer infectious diseases and inherited diseases. I've practiced for almost 30 years and seen major advances during the course of my career, including testing advancements that allow us to know the genetic sequence of an individual's genome for medical purposes, for research, or even for an individual's curiosity about their genomic information. I've served on a national genomics committee advisory to the Secretary of Health and Human Services and National Academies of Medicine Genomics Roundtable. In Vermont, we are transitioning our healthcare and payment models to a focus on early detection and even prevention of disease to keep people as healthy as possible. Overall health and wellbeing are determined by many factors. About 60% of overall health is based on social determinants, such as education level, income, which can determine access to housing, food, and medical care, and personal behaviors such as exercise, smoking, and diet. Information about all of these health determinants would still be available for life insurance companies to use for their underwriting, along with personal and family medical history. Medical care only contributes about 10% to overall health and wellbeing. The other 30% is determined by an individual's genetics, yet we do not use this information in healthcare. The University of Vermont Health Network is changing this. On November 1st, 2019, we began offering genomic testing to our patients through a group of our primary care providers working to integrate genetically determined health risks into the care of our patients. While we often think about genetic risks as rare conditions, genetic diseases are associated with approximately 6,000 of our 20,000 genes. And we are finding that single gene genetic disorders affect about 20% of the Vermont population and carrying a genetic change that could cause a disease in your children is present in about 80% of Vermonters. By identifying genetically driven disease risks before the onset of symptoms, we are able to monitor for disease onset, to identify the early stages of disease when interventions may be more effective, to provide appropriate treatments because we have a diagnosis. And in some cases, mitigate the onset of symptoms or disease through lifestyle changes or medical intervention. So genetic information is not always deterministic of disease severity or outcomes without options for healthcare interventions. I'd like to, if you'll allow me, share a personal story. My husband, Greg Merhar, and I gave each other our genome sequences for Christmas in 2014 and received our results in 2015. My results were rather boring, but Greg's results were life-changing. Greg's genome showed genetic changes that cause a genetic disease called familial Mediterranean fever or FMF. We realize now that Greg had symptoms of FMF since he was a child, but the symptoms are not very specific, although very severe and include extreme abdominal pain, slow healing of injuries, and general aches and pains. Over his lifetime, Greg underwent many medical studies and tried many over-the-counter remedies, but nothing worked. We didn't have a diagnosis. To our surprise and joy, we found that FMF is treatable with a drug called Colchicine, a drug also used to treat gout. Greg has been taking Colchicine since 2015 and is largely pain-free. He says he met me so he could get a diagnosis and feel better. This primary care physician has patients with FMF, but didn't really think about FMF as a cause for Greg's symptoms because Greg does not look Mediterranean. He has blonde hair and blots. So genetic identification of disease risks can help physicians also consider diagnoses they may not otherwise think about. And genetic results can be life-changing for people. Unlike Greg and me, who were just curious and bold about learning our genomic information, many people fear the misuse of their genetic information. So may not agree to have genetic testing to inform their health and healthcare. The Federal Genetic Information Non-Discrimination Act or GINA of 2008 only protects Americans from health insurance and employment discrimination based on their genetic information. But does not protect against other forms of discrimination based on genetic information. Vermonters may see the risks of genetic discrimination as greater than the potential health benefits and not agree to have genetic testing to inform their health care. These risks are documented in articles my colleague, Jason Williams shared with the committee. S247, if passed, would more fully protect Vermonters from discrimination based on their genetic information, including life insurance and long-term care insurance and help ensure Vermonters feel safe having genetic testing to help understand their disease risks and can take appropriate preventative measures to improve it. As we are already moving forward with broader use of preventive genetic testing here in Vermont, these protections will be important for Vermonters to benefit from this advancement in health care. Thank you for your attention and I'd be happy to answer questions. Questions for Dr. Leonard, Senator Bray. Thank you, Dr. Leonard. It's great to have you joining us here today, especially given how deeply you know this subject matter. So I'm just curious about how you think about the issue of adverse selection. So I'm entirely supportive of the idea that I hate to have people fearful from getting a test because they might think the information would then lead to negative consequences for them financially or otherwise. And then maybe foregoing diagnosis the way your husband had it and then treatment. So that's definitely not anything that anyone wants. But I'm just wondering if someone does undergo some sort of genetic analysis, find something and it has consequences and it then drives adverse selection. How do you sort that one out? So while I like to think of Vermont as leading in the US and in healthcare reform and we are, the United Kingdom is also offering genomic testing and has protections against misuse of genetic information and use of this information in life insurance underwriting. And there have been no adverse effects on underwriting or life insurance companies in the UK. Canada likewise does not allow this. Florida and California also have laws in the United States that prevent this. So there have not been adverse outcomes with these types of blocks on using genetic information that is not part of the medical record and medical and family history can be used. So from family history, you get some genetic information. Sure. In other places where this has been done, there has not been a negative impact. Okay. If the genetic testing is part of your medical record because insurers can't require that you have a genetic test now. But if there's a family history of a certain cancer, I know I'm always asked that would be okay to use, but if there has been a test done on your sister and it says, you know, that the gene is there for that whole array of female cancers, ovarian being the big one, the insurance company could not use the test or could not know about the test. Correct. So right now, they can use the family history that you have a sister who had early onset breast cancer and even had genetic testing if it is in your medical record that shows that there is a BRCA one or two gene. That shows that there is a BRCA one or two gene mutation that caused this. But you couldn't use that. Breast and ovarian cancer. And by you having that testing, you know whether you have to undergo the same procedures your sister did or whether you don't. And that is very important information for a patient to feel safe. And we know that studies have been done and patients refuse to have the testing because of a fear of not being able to get life, long-term care or disability insurance. Okay. So this should not be. Once you buy a life insurance policy. So I can see if you're 22 and you don't have life insurance. But once you buy a life insurance policy, they are not privy to any tests you would do. I think that was, I see duck. So we're dealing with this probably a fairly small group. Well, right now in Vermont it's becoming a larger and larger group of people who will have genetic information in their medical record. And we have to inform them that Dr. Wildon will talk about this. We have formed them of the risks that they may not be able to get life insurance or it will cost more or long-term care insurance or disability insurance. And some of our patients are choosing not to get this testing done. And yet we're finding that 20% of people we test have something that's medically important and 80% of them are carriers for a disease that could be passed on to their children and show up unexpectedly. Okay. Other questions. Dr. Leonard, you said you had submitted to the committee and I've got my documentation or you said your colleague had but I think you may be thinking of the Health and Welfare Committee. Jason Williams should have provided my testimony to the committee. Otherwise I can provide it to face. I'm just looking for the documentation that shows statistics for how many people refuse to go forward because they're afraid they can't get life insurance. I think that was the context you said there was documentation. There are articles that Jason Williams provided. Jason, has Jason been here? We can provide that. Maybe he was last week. I've got the wrong screen up but I just wanna make sure we get that information. Okay. Any questions for Dr. Leonard right now? Okay. We're gonna go on to Dr. Robert Wilden and Dr. Wilden, just tell us your name because we need a voice to go with the name on the tape and who you represent and the floor is yours. Madam Chair, just one second just to clarify for what Dr. Leonard just said I think he sent it to us on the 24th of January. Okay. And he's essentially the lobbyist for UVM. Okay. That's why he sent it. Okay. Yeah, just so you know. If it was there, I didn't think we had heard from him but if it is on, if we've got it, then that's fine. Okay, that's, I just wanna make sure we have it. Okay. Sorry. Thank you. Dr. Raina Chandra had his hand up for a question. I don't know whether you wanna go with that or me first. Wait, who had their hand up? Okay. I'm getting notes here on. Dave Rugginshaw, Shari. I have you on my agenda and I think you're the last. Oh, Dr. Wrench, Shari, you had your hand up. Yes, I just, I think that's very generous, Dr. Will. I just wanted to make one quick comment because it was brought up that there are legislations in other jurisdictions there, but two things. Number one is that those would in many cases limit the amount that we're talking about to the hundreds of thousands of there. This bill has no such a limitation. And the second is, is that this bill would introduce family history into that ban by our reading. There is no law of such an in the nation or otherwise I see some shaking of head so that if that's not the intent, that's welcome shaking of heads and obviously look forward to that conversation. Okay, we're gonna, we will go through this but basically if there was some limit, like if you were going to take out a million dollar policy, something above the norm that further testing might be allowed that would limit adverse selection. There are all sorts of avenues to provide reasonable protections that we've worked at now in dozens of states for both consumers and patients alike. And so absolutely hope and open to any of those types of things short of what this bill would do, which is an all out ban on predictive diagnostic testing. Okay, so we will take a look at other states before making any decisions. So I'm going back to Dr. Wilden and I probably massacred your name too. No, actually you got a perfect, thank you very much. Okay, one for me this week. Great. All right, good afternoon, Senator Cummings, Senator Lyons and members of the Senate Finance Committee. I am really grateful for the opportunity to explain today why I ask you to support S247, a bill to prevent discrimination based on inborn and unchosen genetic characteristics, principally before they cause symptoms or even diagnosed. I'm a medical geneticist. I specialize in the diagnosis, management and counseling of individuals and families affected by genetic disease. My clinic is at the Children's Specialty Center of the UVM Medical Center in Burlington. I and my geneticist and genetic counselor colleagues see patients of all ages who already have genetic disease or who have symptoms that might signal a genetic condition. We also see healthy people who have a blood relative diagnosed with a genetic disease and are worried they may come down with the same thing. People who want to expand their family worry about passing something on, they may not even know they have. Genetic testing is one of the tools we offer them but it comes with a catch for those who don't have any symptoms. In seeking the knowable risks, they can lose access to resources and services many of us take for granted like life insurance. It's difficult to watch as people try to make the best decision for themselves and their families under this odd paradox. For most of my career, the only way to prevent disease was through family planning and for a very few rare disorders, special diets. This is changing. More and more treatments exist for both rare and common genetic conditions. At the beginning of my career, children with cystic fibrosis rarely lived past 20 and people with Marfan syndrome often died before 35. Now people with Marfan syndrome who are diagnosed early have a normal lifespan and thanks to improved care and amazing breakthrough medicines, people with cystic fibrosis may live to be as old as you or I. Cancer is more treatable when it is detected at early stages. Early treatment also costs less and has less impact on one's family and livelihood. The same is true for genetically driven disease. Marfan syndrome and cystic fibrosis have early signs that astute healthcare providers can recognize, but many genetic disorders destroy silently undetected in routine care. Genetic susceptibility leads to advanced cancer at young ages when it's not on anyone's radar. Susceptibility to heart rhythm disorders can end teenagers' lives suddenly, something that if known in advance is preventable. Screening for genetic susceptibility, either in those with disease in their family or with DNA screening tests allows for early medical treatment. Even without preventative options, education for self-efficacy helps people at risk recognize warning signs and when they occur, seek care immediately. We don't know everything about how to use hidden information in one's DNA to improve health and wellbeing, but we know enough to make a difference. We manage uncertainty as we do always in medicine and we learn something every day. People deserve a choice to have that information and share it with their healthcare providers without fear that it will disadvantage them and their desire to protect themselves and their family. Fear of negative consequences, real or imagined, has dramatically impacted willingness to take even simple measures that reduce the risk of death or disability. We've experienced that intensely over the last year. Within the realm of genetics, scientific studies have found that people often choose not to get genetic testing because legal protections against non-health uses of the information are incomplete. And I'll insert here that many of those people, if they got genetic testing, would find out that they aren't at risk and don't have to complete a bunch of medical screenings just because there are risks by family history. So they lose the opportunity to find out that they're actually not at risk. Amazingly, this state officially recognizes this gap as real. Both Vermont and New York require people seeking medical genetic testing to sign a written informed consent that includes information on the risk of non-health insurance discrimination. So as a physician, what that means to me is I'm charged by the state with informing someone of a risk that they may have if they get genetic testing that's protecting the interests of an entirely different industry. The state also recognizes the value of early detection and treatment in the routine process called newborn screening. We screen every baby to prevent death and permanent disability from a small number of treatable genetic disorders. I'm here to support S247 because it will help people to gather and use their own private genetic information to take control of their own risks without fear of losing something else. Thank you. Okay, thank you. Do you have a copy of that informed consent? You could email to us. Yes. Okay, that would be good to see. Senator Bray. Thanks, Dr. Wilden. Just a quick question. We're all coming in as a committee to this discussion now, but I'm just wondering in how many years this will be would you think that this might become routine part of your medical care that we will use this kind of screening as part of you may not even need to be sort of called out as particularly at risk. It'll just be an ordinary screening procedure. So an ordinary screening procedure like colonoscopy for colon cancer or mammography for breast cancer beginning at a certain age. And what we would do if someone has a predisposition to those is to start those screenings earlier. And it's hard to predict. We're trying to pilot that idea right now. And it seems to be giving us useful information. And so it's really a matter of how quickly we can sort of diffuse that idea and disseminate it and make sure that it's not a financial barrier for people so that everyone can get the same benefit. I mean, I think part of the reason I'm asking it is kind of a closing either opening or closing the door and the barn after the animals gone. So it's making me think if we are prevent, I'd love to know how many people we're preventing from moving forward. And if that number is gonna only grow year by year then that would be of concern. Yeah, I think that's what we're concerned about. I mean, we know that it's impacting people now even when they only come in because of a family history of genetic disease. But when we begin screening people that are known to have a family history of that then that could be a much, much larger group of people who would potentially refuse that opportunity. And I think the area that this committee is focused on is it seems to be life insurance, not medical insurance and trying to limit the adverse selection. I mean, if I didn't want my life insurance impacted by a genetic test, I think I'd go out and buy the life insurance two days before I got the genetic test. Maybe I'm just cageier than other people. But I think it's finding out that and I am forgetting the disease but you're almost guaranteed to die in your 40s. Yeah, folk singer, not Arlo, Arlo's father, Woody Guthrie died from it. If I knew I had that and I was 29 or 35 I might be inclined to go out and buy a million dollar life insurance policy knowing I might only live four or five years so I wasn't ever really gonna pay off that policy. And that a couple of those, a million, three million could make life insurance less affordable. And then I don't know if they could come into this state and buy an insurance policy they couldn't in another state. So I think we need to look at that. I don't think we wanna deny people life insurance but I think we do wanna prevent them from really impacting the life insurance market so that you end up pricing other people out of it. So I think we'll look at that, Senator Pearson. Thank you, Madam Chair. I'm wondering if any of our witnesses and perhaps particularly folks representing insurance could just help me understand from your point of view right now the problem when you have access to the genetic history all of the specter that we're discussing right now exists today and the insurance risk and the actuarial risk is all sort of the same today. And as I listen to the discussion I'm sort of wondering, well, okay, we're helping individuals understand their particular situation but the pool of remonters in this case looking to buy life insurance, the health isn't changing. So help me understand what, I guess you've mentioned the cap and maybe we could look at that but help me understand what really is the difference because I guess I'm not seeing it. So, well, first of all, to be clear we're not advocating for a change here and what the basic principle that we're advocating to maintain is one that we call a level playing field that is central to the core of life insurance underwriting and that's basically that whatever information is available to the applicant that if they are looking to buy a voluntary policy at the amount that they choose that they are willing to share that information with the insurer and not keep selective pieces of information available, especially then to Senator coming up, I think she's referring to Huntington's disease absolutely corrected. If you have a markedly lower life expectancy and you knew that then it would only make all the sense in the world to buy an enormous policy to her point that she would have gotten that testing two days before, I mean, I'm sorry, gotten the policy two days before getting the genetic testing, we would be fully supportive of that because again, the idea here is that you are level with your understanding of your own medical history and we would absolutely encourage and have encouraged with genetic counselors and physicians that open transparent discussion around insurance before the genetic testing is pursued or only ask is once the genetic testing is pursued and the results are negative that it seems only at that point to be fair and reasonable in terms of the sharing of information. One more point I just have to make and I apologize to be absolutely clear in Dr. Wilden's example that if there were an adverse family history but the genetic testing were negative, well, the way that the law is written is that you could not use that negative genetic testing in favor of the person applying for insurance. So that's the kinds of ideas that happen when you try to move for these complete bands on certain types of principles. And it's been testified that this kind of a bill is law in Florida and Canada and the UK, are you predicting the market's insolvent there? I mean, is it crashing? What would we know or what are you seeing after in the places that have already made this change? So two comments on that. So one is the UK and other countries an entirely different, of course, system around that but an entirely different law in particular, a mark of limitation of their restrictions in terms of the amount that we're talking about, right? So a moratorium in the hundreds of thousands of dollars and other countries have said, okay, for these, you know, six conditions there will be principles around that but for the remainder of conditions is a different set of principles. There are other jurisdictions where it's entirely tour, I mean, life insurance is a long, you know, a land business, right? And we're talking in some cases about laws that are, you know, two years on the books. The final thing I'll mention about Canada, of course, is that is a federal bill and there you don't then run into the issue of one state doing something that the entire rest of the nation is not doing and then people being able to come into that state to purchase insurance selectively. We already have that with Florida. To say Florida, there has that but they do not have the family history piece. And again, I don't want to present Florida as going well, right? Because we are already hearing those stories out of Florida where people are not able to use information in favor of the applicant as examples and then types of things where insurers would love to partner with applicants in terms of bringing out these types of testing, encouraging these types of testing but not being able to incorporate that type of testing into product because of the way that the Florida law is written. So I wouldn't portray the Florida law as going well. Okay. I'm going to go to Senator Bray. A quick question, it's probably again for one of the folks representing insurers is, I mean, I'm just trying to think all the way around the issue and one thought that occurs to me is if people get tested, they're probably highly motivated if they discover something to pursue a course of treatment that's beneficial to them. So it also seems as though it could confer a benefit on the people you're insuring as in, they discover something that might have gone undiscovered and would develop further for longer and by finding out sooner, they may have better than predicted outcomes because they've been proactive. So is there no benefit that accrues to that side? Oh yeah. I think you've been at this for longer than you're letting on because these are the exact types of questions that we go through. And these are the types of questions that we go through when we make individual ratings and actuarial assessments, they're absolutely, you're exactly right. We take in both the negative factors and the positive factors and we make the fairest assessment possible. But that's all we're trying to say here is don't remove only one side of the equation because the actuarial is gonna be the first person to raise his hand or her hand and say that's not sustainable. Okay, so right now, you cannot require genetic testing. So the only way you can get genetic information is if it's in the medical record. And I'm assuming if I wanted to have a test done and not have it sent to my general practitioner, I could prevent that information from being sent to my doctor. So it would not be in my medical record. It might be on the computer somewhere. So right now you have access to my medical record, which I have some control over and you have access to my family history. What this would prevent is if in my medical record it said that my sister or my mother had genetic testing and these were the results. You could not know that. You could know now whether or not my mother, my grandmother and my father had all died of heart disease or but you rely pretty much on me to tell you the truth. If I don't wanna tell you the truth, it's not there. I mean, my doctor relies on me to tell her the truth about family history. So I'm wondering, I wanna see the information on how many people actually don't get genetic testing because they're afraid they won't get life insurance. And then I wanna see what other states that ban genetic information do about limits on life insurance. I don't think I wanna become a Mecca for people if they are able to come here. I somehow just don't think you can walk into Vermont and buy a life insurance policy if you're not a resident but I'm gonna check that out. And I don't, Emily popped back up. Can I just drive over the border from New Hampshire and buy a life insurance policy? You cannot. So legally you're supposed to have a Vermont residence to be able to purchase life insurance in the state. I'm not sure if that's how it works all the time. Yeah, if I had a second home here and I lived here four or five months of the year, I assume I could get, I've got a Vermont residence. So I could under those circumstances, all right. But I couldn't drive in from Ohio and buy a policy. I'll defer to, I'm proud on that. I obviously would very much want that checked because in our understanding and other discussions it's any contract in which the state is signed regardless we're talking about multiple millions of dollars available. And the question is, is would you change your state of residence if the answer were multiple millions of dollars? That I could leave to my family because I know, yeah, okay. I have a feeling we may be dealing in some extreme cases. So I wanna see if we can get a hold to NCSL and there may be end coil has some, and yeah, there's enough insurance organizations out there to see what the experience has been, what other states laws are, what their experience has been. I will grant you that other countries have very different systems. So I think we're gonna look at this country and we'll see where we go from there, all right. Cause the insurance is really what we need to be looking at. And right now it is after five. And so I thank everybody for hanging with us. This is the legislature, the floor went long and everything got pushed back. So I appreciate you being with us and I'm glad I'm not sending you out into the snow. I hope many of you are zooming from home, or at least at your offices. And thank you all and we will, committee, if you think of anybody you'd like to hear from or questions, email them in and we'll try and get some witnesses and see if we can't get this one out. We've got a couple of big bills we do need to get out. So thank you all and I'll see y'all tomorrow.