And the chief operating officer and also welcome Thank you for coming in here for work. a of course is so relevant to our patients and I feel like my health Center. We have our patients So greater Portland Health is is portland's F U H C Portland area which we finally managed to get funded a couple of months. Thank you so much Your fight was tremendously important. Thank you yeah and even with federal funding you know, given the current ACA about half of our patients. Uninsured The work we're doing together is so important, so thank you. Thank you for having us here. my my name is Patty Morris and I'm from Elizabeth and mainly. I'm here as an advocate on behalf of those in the Cystic Fibrosis Community. My daughter has cystic fibrosis. she's a very healthy young adults and so I'm here to kinda figure out why again are we worried about this and cystic fibrosis is sort of a classic pre-existing condition. You're born with it, it's it's it's it's luck of the draw of the draw. It's genetics so both sides have to have it for a child to be born with it happen in any any family basically and And I can talk more about that, but it's it's chronic and Progressive mainly affects the lungs and We've come a long way. it started to open all four to 1988 with the ages of 18. It's now over 40. we don't wanna see the fences that have helped her get there become unavailable. Good morning, I'm Kristine Forman Simmons I'm from and I am with I'm a volunteer advocate for the Leukemia Lymphoma Society. I'm here on behalf of the one and three cancer patients in the state who have some level of blood cancer. I'm also the daughter of a current survivor as well as the wife of a heart survivor and so it's very important to me. also as an entrepreneur. My husband also as an entrepreneur, He's an LLC here in Maine for us to be able to maintain our businesses as well as maintain his ongoing treatment that he has to have every three months. It's important to us and we're also. Protect the families that have children who will be able to pre existing conditions, especially when they get older. They now have access to life-saving treatments, but they still have that preexisting. And they're looking at the skyrocketing costs throughout their lifetime. so I really appreciate the continued work. I love working with your office. We've had the opportunity to have great communication with them and I'm here to provide that personal information as well. Let's talk about blood cancer patients on the homes. My office, Paris Patrick O 'neill, are here Patrick works with me in Washington and health care matters and this is up here. We're on Hope variety of issues Veterans They represent a living proof of my leadership philosophy, which is hire good people and take credit for it. It's that I've had a chance to meet with Patrick twice, which has been a delight and we've gone from really talking about the issues about the ACA as well as oral parodi and then we progressed from talking about that to what's going on in the state of Maryland and all the other great work that's happening here. So I've been really thrilled to have that open channel of communication. I feel I know on behalf of LS. we feel honored to be able to have that friendly and open communications great. Thank you. Hi. my name is Andy. I'm from consumers for affordable health care and so we have a helpline where we help and that was. Navigate health coverage options and we talked to people every day who either have preexisting conditions and they have medical concerns that they need to take care of or they you know as well as people who are already struggling to afford health care costs and so both of which would be greatly impacted by the way that's we propose. So we really appreciate all of your work on this Well you've been at this-we're two consumers for affordable health care go back into the eighties. Yes, we just celebrated our thirtieth. Great Thank you. Hi. I'm Mindy Byer. I am a volunteer advocate for the American Heart Association and I was born in the community. so my parents were told that I needed it today. It's three I'd be lucky. I'm gonna be celebrating my fortieth birthday this summer. I'm very excited. I'm blessed to be a mom of a six year old, so the other thing that is that the information is that when I was pregnant, I found out that I carried the gene. Is a very incidental finding. Sitting at this table that But with my condition I actually I probably need. And depending on how It would be. Good morning my name is Sue and I'm here as a advocate for my husband and for others es. So, Portland's specifically the Street location where there's. Our community is also. Right now. That's where I spent a good part of Friday. I'm Janet. I'm a volunteer with the American Cancer Society is actually. Survivor. To Able to focus the survivors and those that are going to. To be diagnosed to have. Just to thank you just to put it in the context Of course, the Affordable Care Act had essentially four or five basic pillars one of which was everybody has to buy health insurance so called individual mandate. Secondly, there can be no discrimination for pre-existing conditions essentially the National community. and then there were bands for what the differentials could be based upon age and and those. And then, of course, subsidies based upon income for people that qualify a certain income levels and and one of the difficulties was that as the subsidies tail off the policies began to get more expensive because of the additional. That they have. So if I have, it's probably about. When I health insurance now is going to us 2400. $16 a month. In the You don't qualify for the subsidy under the ace, You're self-employed and you're not employed by an employer who pays your correct and we both and we pride ourselves on living within. My husband shouldve two years ago and he said no I I used to work to some capacity so. To me, it's just crazy, I mean. For governor, I called two legislators I was told to figure out how to earn my money. Hear that these are elected official. For us and try to fix the problem and they're telling me to learn. And that that's crazy. that's not who we are. We have more. I wanna be able to keep my own way we have I mean my. The actual I was probably. There's something wrong and when I actually call and talk to the regulator to say this is gonna be a mistake he literally. Actually is the actual that told me that. They have to come up with that so. The part of what happened was there were payments being made under the Affordable Care Act to insurance companies to balance to offset some of these costs and the administration decided last year to stop making those payments and that has aggravated the problem for people like yourself who are not qualified for ACA subsidies, But it's it's had the effect of significantly increase in premiums, which will you're. You know more about this, I know that's gonna hit this fall. There's so they're called the CSRs something stabilization, Suresh Cost-sharing reductions reimbursement, and by taking that away, That means the insurance companies have had to raise rates for protected and the irony is that people who are covered by the ACA who have the subsidies the subsidy will go up so they're. Will be less is that correct, Whereas people like yourself who don't have the substance that are gonna get the full force of this and this was a. A conscious decision that the administration to stop making these payments that is gonna cause this. The pressure all. I should mention by the way because people are always surprised to hear this. My insurance is under the ACA when the ACA passed Congress adopted an amendment that said members of Congress must. Under the ACA and by their coverage on the Exchange. We all had to go on the DC Exchange and my policies that cover in our. So I have a anthem policy. Provides coverage we do have an employer share. I can't remember what I'm paying. It's it's like $1200 a month. It's significantly higher than at this point. Don't hold me don't don't hold me to that. But but but a lot of people don't you know. there's there's a lot of mythology that Congress gets gold-plated coverage and it's different than everybody else's and I even got an email. The other day is it true that you get your salary for life after one term. There was no but I did wanna make clear members of Congress have to. The it's we do get an employer share just like Park Rangers or. You know anybody that works. okay What about the do you see those of you who are covered under under the ad with the substance, the preexisting conditions provision. If that went away, my perception is that would be a catastrophe for millions of people. So I'm 30 years ago, my sister was diagnosed with stage four melanoma and due to that the family had been checked more closely to make Sheryl long story. I ended up having some skin lesions that were not cancerous, but they couldn't figure out what they were and I did some extra testing and it turns out. I have a genetic mutation, which puts me at a predisposition to a. Kidney cancer the issue is that considered a preexisting. Depending on who you speak to you know I I've heard everything I mean it's bigger than that. so but without protection with no pre-existing conditions, insurance company can turn you down or short charge you $50000 right and so my three children have the exact same condition and we must have an MRI ultrasound CAT scan at least once a year by the time. And symptoms occur. It's too late, so we can't we can't monitor ourselves at all. It needs to be monitored it this way and the number of people that don't even understand what the condition is. If I go to the dermatologist and try to explain, they'll say Oh show me that I've never seen that or can I bring a couple of other people and and I'm not getting you know. I can't get that home care. I need if I don't have the ability to go to who I need to see and So my son has this condition. My son has also had three spontaneous nemo's with his collapse. so he is our 20 - six. he'll be 26 at the end of the summer and he has to go on his own insurance and he has he's multiple creatures so he would be it would be impossible pretty much for him to get coverage unless And he leads the cleanest life very healthy kid other than what can somebody help me with the definition of a preexisting condition. How broad is it? for example, if a child had a concussion playing soccer at the age of 12, could that be damm the pre-existing condition if you had to reveal it in a form to get insurance when you're 20 eight. What is a pre-existing condition? Okay, let's say, I think it's a you experience symptoms or if you've been reasonably say that you had knowledge of or. So even if you've seen a doctor for something and you may even have a diagnosis yet, but you had you know gotten some test done and later on your diagnosed even at before that seed. So well, I don't I don't have a definitive answer, but I ask some people in Washington but the idea of a concussion and they said well, it would be a pre-existing condition and so far as head injuries were. You get insurance, but perhaps they would exclude trauma or something. So I think it you know the state of has a that's so I have to double check that specific example, I think they could certainly put in exclusions, but clearly Mindy you're mine is definitely no doubt no doubt and even the things that go along with it. So when I was thinking about getting pregnant, which was a very high. Imagine and I was hoping for 10 years now. I have a genetic testing. Genetic testing that was done to an educated decision on on my. I was no longer eligible for life insurance. connective tissue disorder, so I don't have an ability. So I kind of think about when I think about my insurance. I will be out. But you're your condition Your in general heart condition. You definitely have to there's no police disqualified you from health insurance or they claim. I'm sorry, no no, it's gonna say I found the definition exactly and it sounds like if you have a confusion with that. So the brings freezes and conditions in Maine is a condition based on the fact or perception of the condition was present or that the person was to realize risk of developing the condition before the enrollment whether or not any medical advice, diagnosis or treatment was recommended or receive one effect of that is that by the time you're about 50. You've had something. So I would say that again this isn't a database, but it would be unlikely that someone over 50 wouldn't be have a pre-existing condition, but But it's the matter in the degree that you know impacts people differently. so somebody could fall off a ladder and have exclusions when they go to get insured. That relate to their leg. That directly relate to that accident, but somebody has some really system genetic issues that require really extensive in a specialized treatment and specialized medications that are high priced and so forth is going to be priced out of the insurance that keeps them. Christine Christine I was just going to make a comment and we've recently sought treatment for my daughter for some help with learning disabilities and we actually had her therapist come to us and say if you pay cash, Then we don't have to give a diagnosis that will stick with her for the rest of her life and that was all right. That's and that's where that's the the thing that my husband and I are seeing the way that auction had my daughter work. Possibly will be the diagnosis that we don't necessarily pay cash or not because on the one hand, our insurance covers part of it, but you don't want her to be labeled. This is separate from the right, but we've had to have that additional conversation where if we put it through our insurance company, then my daughter will have this as a pre-existing condition for the rest of their life. So it's very, it was a very difficult conversation for us to have about that and it's one of those things where, of course we have that option because we don't necessarily. Have that wing against her when she's working through issues, the kids go through school and things like that. So you know that was something that practitioners are trying to inform their patients and their clients to say the understanding is that you're once you submit this to your insurance. We have to give a diagnosis right once we submit this, that's it and there's one of the problems that the tax bill was passed in December repealed the individual mandate actually. It didn't actually repeal it because in order to do that they would have to have 60 votes, which they didn't what it did was reduce the tax to zero. So technically it's still a mandate, but there's no penalty for not getting insurance, But the problem is as let's assume for a moment in this case. if you think about it if you have. And no mandate that nobody gets insurance until they're on the way to the hospital. That's that's another two sort of put together of course, one of the arguments in this case that the administration is making is that without the mandate everything else in the ACA falls apart. Prophecy by the way just to get on the record, my position is the ACA is not collapsing. It's being plugged now. that's what's happening in piece by piece and this pre-existing condition is just another. I wanna talk to you about you do you deal with people with drug issues. Is that a pre-existing condition in other words? if you're When you're 20. You get sober and you're playing for 10 years and you apply for insurance when you're 30. Historically, it has been considered pre-existing condition and as it is, we all always 10 percent of people with substance. We're already difficulties with accessing treatment it exactly backwards. I was listening to this discussion and you know we really need to be focused on prevention and such a a wise cost-effective strategy to be to be focused on prevention. this move would do exactly the opposite discourages people like with substance use disorders whether the stigma and what is gonna wanna go in and get a diagnosis that will be a condition that will be that will haunt you for the rest of your life. And and our detox program. Historically, our my agency served older males with alcohol. Opioid crisis We're seeing a much younger demographic much more balanced men and women. We have a lot of young people on their parents health insurance who come to our our detox program seeking detox for opioid use disorder. Very concerned about them as they hit 26 and. Other health insurance What you mentioned prevention and this is the topic of this discussion, but All of this talk about insurance, we're missing the big point. I mean we're we're the argument in the past 10 years in this country is about who pays. Medicaid ACA private insurance out of pocket, but we're not talking enough about what we're paying. We're paying about twice as much per person for health care in Americas any place else in the world, and the results aren't that much better. so we really need to start talking about prevention. My Pet cause is Medicare, where I learned that Medicare won't pay to put a grab bar. Elderly person's House to keep them from falling but will pay for the broken hip right I mean. Pound-foolish and and we've really got us rethink we got. My friend Bob Macca used to be in the AMA who's here for me and said people use 30 to 50 percent of the of all medical expenses are for them. Now they are if it's congenital for sure, but think of the money that we're spending that you don't need to be spending because of because of the that's good. I just I think. This perverse policy to discourage us. Go to the doctor and find out if you have something that you've joined the life you for being late great to have you here. Thanks you know I think one of the other consequences of this is when people don't have access to insurance or they have access to insurance and high deductibles and copays. We're gonna avoid getting that preventive care can get, but you know from from the provider perspective. We also know that the consequences that you know we still take care of people, but we don't see them until they're really sick and they haven't got the. So, by the time you see the the patient, they're very sick and it's very costly and we provide that care because you know the providers are the safety for that. But we've done that cost gets passed back. You know that's that's your point across the health care you know, because we we we have to pass it on to the commercial payers which actually drives up the cost of premiums for even the groups kind of thing. so it becomes a vicious. That's like we have universal coverage, but it's the most expensive inefficient possible way to provide and if you. You have to. And and and and there's no in our current structure. There's no incentive for. Essentially you pay for a procedure you're not paying to if they don't have insurance. you're you're not somebody within the health care system. If you have insurance with a reasonable deductible or copay, then we can work with the individuals and get them access. We can manage them. We can invest and care managers to do more of the preventative work as opposed to. we're not gonna see people to buy whether it's substance or anything else. We're not gonna see them until it's too late in terms of us which ends up. Costing everybody money whether whoever's I mean that's part of it. That's a larger conversation. The overall health care cost issues so. What do we know if if if the ACA prohibition on pre-existing conditions goes away, we're banks basically back in the world. Just whatever the luck of the draw is so yes, that was my first back in 1994, I got married. I went to put my husband on my insurance at a public school system, and this is a letter We got from Cigna saying Thanks but no thanks epilepsy. You still got the letter in 1994. It was a shock. I couldn't believe it. We are sorry to you. Your membership is not been approved. And it was because of his evolution. Well, that was a group plan under. A school system in two okay, as I said, I got married, I went to the HR office filled out the form. you know we got the information they ask for and. So you're just add a lot right and if he has as a medical need, you have to try to figure out how to pay for it. So we left the state. Yeah but yeah, I mean basically you know my husband was born in 1970 at age 15. He started having seizures epilepsy. he's only had about five in his life during the day. so it is nocturnal, which isn't that impactful right if you have a seizure being in bed in place to be. But he, you know this just you know. it's such a young age to be all of a sudden like what do you mean? It doesn't work like this. It was a shock to me but now you have coverage now well, I actually wrote out what I was hoping to say, but for privacy, I think I'm gonna Just give us comments So again, my husband was born in 1970 with epilepsy he. Yeah, with rejected for insurance so that was you know a shock to my system. you know through no fault of his own. We're just talking about that. you know, like how much are. And for what you know is that my husband has been basically treated this whole life like a second class and he is able to do that. that disability has not always prevented him from working. He's like Cumberland County Sheriff's deputy until he recently had his epilepsy and developed a condition that now has left him. So he's back it's. So you know he's all set as far as I can tell now, but I don't want this letter to go out to anyone ever again, preexisting conditions as a term for denial ones and this one of history. that's what I was gonna read you keep that coffee. I'm here to urge you not only to ensure that the term pre-existing conditions is a reason for health insurance stays in the dust bin of history. That's that's pretty good that. Exactly it's just. You know and I just want to you know every time I hear about you know someone paying over $2000 a month. I all I wanna know is how much of that is profit you to to somebodys. Sure how. Insanity is. Well, the other one of the other things the ACA did was limit the percentage. Insurance premiums that could go to overhead This is an 80 percent. I think 80 percent has to go into the actual medical. And that was an important part of the law. so what you're gonna do. Really important because this when we take away the coverage of pre-existing conditions as a. What can you? Priority right now, so we have epilepsy, we're gonna have those. Figure out where the most. But you know what we're actually you can't afford or you can. We're having to negotiate what actually the most pressing and so my 30 -minute visit. We might have 15 minutes looking at where we can get that information of what actually is the most pressing issue right now for two. I don't want to have that conversation with my patients and it's terrible and that just leads to more costs down the road because their positions and to clarify, I am not paying $2400 A. I I did so much research to figure out how can I get that cost in what I can afford and literally for the last four or five years, we have paid maximum. Husband's conditions, so I took every plan that was available to me and about Premium. Was able to through. Nobody telling me this, and we really digging that the bronze, the silver and the platinum plan medically speaking are exactly the same plans. It's just how you're paying for it. So by lowering my plan from the silver plan to a plan, I saved myself literally between 10 and $11000 this year. I'm still expected. I mean if I had paid 2400 a month, it would have been 29. Dollars just in premiums, plus my max out of pocket for one person, God forbid I need to get medical care, so I was able to bring that back down to. I think out of pocket and premiums to $25000 a year, but that's still $25000 a year out of 100 how many people are getting that what you're doing is at least in part of self insured right. You're paying a lower premium, but you're taking more risk yourself if you need us and I have been in that position where they the insurance companies because and I won't make the insurance company. but the prescription side of the insurance company and the medical side did not. So nobody can figure out whether. Or not, and because I owed the. And I think it's like a hundred and $1 and I was just like no. I need more out of pocket than I need to. I'm not. The woman said to me on the phone would you. On the phone to explain what's gonna. Is not take that drug. Are you kidding me shame on you? That's why we're here. Think about the future So You Think about my condition, I was lucky to live for. In general patients in 1978, I was born. now in our patients actually. Outnumber pediatrics in the United States. I think about and I worry about is I have a six year-old and as I said, I was completely. But what happens when he gets to be a? We don't do something now will he be denied insurance because there's other serious health condition. It's entirely possible if there's a genetic I was that's the next step. That's the next step after Pre-existing conditions is genetically in this position. We're gonna charge you and we talked about you said earlier, you said, that I had no way to prevent it and I didn't, but what I made the choice to have him. I did have genetic counsel. Gonna be a 50 percent chance to send the jeans to five percent chance. I decided to make that educated decision to have a child because it. To take on that, we were very lucky and it was a five percent chance. so I took that on, but once again, what would happen if I had made different choices and in the future where you. To say my sister had the same thing and I had to make the same choices about having children. they told her not to and I ended up doing an in vitro procedure for her and her children for her because she didn't know she didn't know what was gonna happen when I heard her sisters being close before so that's amazing It. I just didn't want her to do it. I love my sisters but. In five years, And it's scary to watch. I missed you Linda Linda. you made an important point. And that was the complexity of all of us and And and you know there's a lot of folks in Washington talking about turning Medicare into a voucher program where seniors would get a voucher so you can use this to buy whatever insurance you want. Yeah right. But yeah, I mean imagine going you know the complexity, but you're 80. Caregivers Yeah, go online and go through you know well variations in fermentations. Out of pocket deductible. So if you're you're you do this for a living, so let me sit down with them and and everyone that has like a pre-existing condition when you meet with them to kind of help them access any health care just because in the fact that some point they had a Medicaid. but now they're turning to be on their own. They have to stop being. we have care you see that you spend so. Time with them because they wanna make sure that every piece of information is being explained clearly to them so that they can make decision and it takes more than a time that we're supposed to you know to give for one patient and you understand that cuz you don't want them to make your decision and then at the end of the day, not be able to afford what they have to get to and also not all the. Representative from the ACA understand all those questions cuz if you stuck in some point, you also have to get to the them to kind of inform you if this condition and this condition will be covered by the deal with the tax credit. that's it. but the health insurance I mean the company, the the is the one that provides more information. so when Department will tell you that we don't handle this, this particular case, we're gonna refer you to. So and then you go. The information from a different one and she was mentioning the pharmacy also has the on thing to do because people are also worried about is my prescription. I'm going to be Conn. That's another subject. We could spend the whole day. I wanna come to that one we'll we'll do it. She wants to come to. We haven't planned it, but we will because that's a really important and I think another comment on this whole. We've such a common threads here having a daughter was and seeing how far we've come with. it makes me think about fear what will happen if your daughter? She's 30. Yeah. that's. Beautiful 20 - five years ago, That would no it was the the median age of survival was 18. That's a very cold sounding statistic. That means half lived below that half left beyond that and quality of life was crazy. You're you're younger, but the governor of Maine, Ken Curtis Yes, in the sixties, No-I said he had two daughters, Angel and Susan both of them had them both died. One -A 20. I think yeah, I think she might have made it to. That was remarkable and there are people there's a range of how it plays out. There are people who have been diagnosed as adults so they didn't have all the medications, but the typical scenario is that your body is at work in a different way. so you look like us outside but inside you have this genetic thing going on where you have thick and fluids so it affects your lungs. you're getting lung infections over time and hospitalizations and people will think that. Child has asthma sometimes because you know they hear a lot of coughing and things like that. so that's one of the results. Another one is that the other organs that are affected, so there's fertility that comes into play too and things like that. But the life threatening stuff is usually the lungs and the digestive system. so Alie just had a hospitalization. She rarely does. We've been very lucky but we've also we're gonna say she had one for digestive and then piggy back on that probably hospital-acquired of pneumonia. so once you go in, you have those risks too even with really good care. Sometimes it happens, but so she had pneumonia, but she's always come out with let me put it this way her doctor. She's back here in Maine now by her first home in Brunswick but in Colorado for the past couple of years, she went to National Jewish Hospital out there and went on this amazing drug that we've all worked our whole life to get for her or come, which is a miracle. For its that the pill that treats the genetic level, so it's not perfect, but it's overriding a lot of what's happening in the lungs so you slow down and then even this case of the best we can hope for before was that medications would treat symptoms. Now this you don't have to answer this question, but if you if you will it would be I think important for us how much is that gonna cost that is one of the ones that is in the 250 plus thousand. A year that we're hearing about with the targeted medications like that. now I want to make about that is we're all really busy from the day. We hear this diagnosis right, especially if it's a rare disease feeding the you know funds to the foundations to get research to get this great biotechs and it's you know this is a whole other subject to but that that injects back into the economy. so we're hurt on so many levels when we're told we're gonna mess. Pre-existing conditions again and go back to letters like you're talking about, but not only that we're going to scare the pants off of you about even revealing you have genetic conditions. We're the ones who put that out there. Allie is on my Facebook and Twitter and everything else saying. please help us overcome this awful disease. Why would I want to do that with my child and put her out there like that? I guess the. Is that all of that fundraising and awareness raising is at jeopardy too, so actually keyring because if you have a preexisting condition, you'll be forced to put it into the shadows. I think so I think so I mean we've always been very open about it. But when we start talking back to Charlie's, we end up making more expensive. And and so last point on this is that the alternative is what we have right now is incentive to work our butts off getting these things cured or at least in a technical term that way. Yes, it's a pre-existing thing, but is that her miracle drug was so such a shift because of all this work and putting ourselves out there that her doctor. Who's been doing for years and so do we but I mean you're not surprised that we did, but her doctor who deals with this all the time, but what would happen to what let's assume for a moment? There's no prohibition against pre-existing conditions and insurance companies can either and by the way they're not being evil people. I think to be clear they're they're fully administration might be about but they but they say, okay either deny. Like the letter or the coverage will be $200000 a year. What would happen? what would you do what would people do or what did people do in that situation? I think they go broke first of all because you're not gonna like your child's die. If she's on the top of the burning building, you're gonna run and catch her. We're a few places in the world where people lose their homes right right right? Do you mind if I jump in on that, of course, because I with LS, we have this opportunity. We have 14 new medication. On the market right now that will save people's lives oral therapies. I'm looking at the one that my dad is on now, it's called Ruca. It's $12000 right now. we have 12000 a month 12000 a month and when he was first given that option by his oncologist to say how you can take this medication you go back to work. You can live a normal life. Your fingernails might be a little bit brittle on your hair. It's gonna fall out, but you have the opportunity to thrive The IV medications on prior prohibited from working in his head off the table. Couldn't eat really good. And it's you know we talk about that question all the time we keep innovating. this fantastic medications that are saving children's lives Elder's lives if they don't have access to it. It's like having this thing out in front of you saying what did you do in your life? Not to make enough money to millions of Americans? $12000 a month is effectively not available right and it's optimistic for virtually and it's not. I mean the thing you know we took a look around the House and this is the story of all the time we have this moment at our dining room table My. Saw the armoire we're gonna sell some furniture like and we talk about that about you know how much do you sell off because the time we ended up getting a wonderful patient advocate for my dad through looking in the society, as well as the main Cancer Center in Scarborough, who helped put together a package for him to help cover that cost. But again that takes a certain amount of savvy and it takes a tremendous amount of time. We also the financial evaluation. My dad, 70 - five years old and so there's a certain amount We've worked for is now gonna be completely drained away from you so that you can get qualified for Medicare, but unfortunately, he has a terrible donal issue so that also that also that was the other thing that that the ACA attempted to deal with correct and because in Ruca is a pill versus an IV therapy, it falls on the prescription drug program versus hospital right. so you have that issue as well where we're working on that to make sure that the new medications we have the patients can take. Then have our own part with the medications that they could have had therapy so in terms of cost so the I have a friend of mine who's daughter had leukemia. it's a she was working and. So she ended up waiting for. So you wanna quit your job your income and then you can get. you know for me. What's gonna happen? I've had all sorts of it's a chunks taken off every time. I do it. It's. There's so many people that. They don't have access to. Insurance it's it's. Don't you don't have to you don't have the ability which it's very clear and you know it's it's not accessible. The amount of people having cancers is has skyrocketed. All the different organizations that are right here right now and most of them have talked about cancer Trying to get the insurance if. Don't have it if you've got a pre-existing condition. Life sentences It's a death sentence sentence for life. You can't survive many kids and then you also have the problem that seniors for colonoscopy and say if if you find polyps, don't do anything because I can't afford to pay for having anything done and you Charlie, that person may end up in the hospital with cancer that could have been prevented but. Are being made to it is that you're making decisions in terms of normal colonoscopy when you're going, but if you're in them, but there's a cost that's one of the challenges of health care people wanna know exactly how much it is, but sometimes depending on what you're fine, there's that on cost and the providers are more and more situations these days, so try to balance what that patient can afford versus what they would do with somebody with insurance and that's huge. One of my concerns is just absolutely I think I believe it's something like this. Serious economic impact People are having to make choices between treating medical conditions. Often people. Are really hard working people. You have access to treatment, They can't do that they're gonna do. Families that are really. And really. People are not get back to work. I can't remember early in my career having little kids and not making a lot of money and having to really think hard about going to the pediatrician. huh. Do you go in and I'll never forget my little boy who's now in his forties had a vein in as far as when he got mad have to worry agonized about it didn't have any money. We finally went to the pediatrician and she said. You know what is this, he said. That's a $14 vein. He said there's nothing to worry about that will be $14. That was the but I I remember you know, do you go in for for a checkup and of course, if you don't go in for the check up, That's when you don't get something we haven't even talked about diabetes, major preexisting condition, which affects thousands of people in Maine and millions of people across the country. We hear a lot of people I don't know who have diabetes and struggles for insulin and I think that you know. So you're touching and I'm just really on how important this is, but people are already struggling to afford their health care. We are already you know having to make those decisions of you know when do I get to a doctor When do I not and this is just gonna be as I mentioned a Giants of backwards and make that even even worse, you know I think you know people in health care access to health care quality, affordable health care is a right and this turn more to. Of the food can actually right-I somebodys. And that's so. On the thoughts, I think the one thing we haven't talked about that. also kinda goes hand in hand with the opioid and drug is mental health issues because again you you I have a daughter who has a mental health issues and she was talking to me in way over and just said that you know if I don't have access to counseling with one week might be two sessions instead of one or the psychiatry for the prescription. Or there's something else that I need by a specialist, she said. My well-being is in jeopardy. And that's one of those situations you want you want and this is in a relationship. Oh, for sure, I mean the occurrence is is very significant and I've read that estimates of that. The cost is about three times as much to treat chronic health conditions for. Subst there's a tremendous overlap, probably about 80 percent. It cost. One of the things that I'm getting out of this is that we're making our system. Ironically, we're making our system more expensive by. We're we're cutting expenditures and therefore ended up ending up with more expensive. The opioid crisis is because of the lack of It's an enormous shortage of treatment beds in. Although I did encounter really, I think pretty exciting model and elsewhere that area they're calling it. They call it the hub and spoke where they have a Central sort of place where people can go. but they've got. I think now 30 primary care physicians who've been trained in drug treatment. so it's not an inpatient, But it's proving to be pretty effective in the hospitals are working together to fund it but. You know, I'm just you know we've got to find better. You know the more complicated it is the more expensive it is for people to access health coverage. The less likely it is that you're gonna have younger healthier people buying in. I was the issue with repealing or taking away the penalty in those who are immortal right-I have and so you know and that's just you know it's gonna be set and then it'll become even more expensive and I think that it's just eating the problem. you know the whole idea of insurance is you don't never know when. And you can feel immortal and then suddenly. And that's the that was the principle behind the individual right and if you have a mix of patients, some of whom or older and have more illness and the younger and healthier, and it makes it the whole of the cost of that. I'm getting no. You have to go too far off the reservation, but I think you know it's in some ways you know health care as a National product these days. so it's from the economics engine standpoint. There's a lot of people across the country that are applying jobs' for but I think it what's happened is is that you know there needs to be regulation you know and and and my early years is all about you know free enterprise and let the market system work, but I think the market system is not working out here because a lot of people. Involved in health care there's a lot of people making you know profit off of it, but it almost has come back to that decision of compared to a business. You know we as consumers may decide. I'm not gonna go out and buy a new car cuz I can't afford it. That's a decision I'm gonna make but when it comes to health care, those are much different decisions in the in the free enterprise system to do it. So that's the rub that I think we have these days. you know if you if you fix a lot of these things we've been dealing with with a big issue across the country, but we have to and the free market system just does not work because of of what happens when everybody. Trying to make a reasonable margin on everything that gets passed along and driving it down where the consumer is the one that is left to the back and consumers are being asked to make decisions with very little information very comfortable here outcomes. They really don't know the cause and it's to inherit to call it the market. It's not really accurate. There were three insurance companies that I. Or that we're offered to me at the time of enrollment when that letter came out of my insurance was going up. Dollars and change and I called the insurance regulator they, I said, I need a spreadsheet that shows every planet that's available. medically speaking what it's. They sent me a 78 page document and literally I went through because I was determined to get affordable. But there's so many people that you don't take that time and so literally calling your insurance and this will blow your mind to the insurance company and I was discussing a bill from last year. They literally said to me on the phone and I'm really sorry. This phone call because it's. And I said, excuse me could you. Shame on you, I'm. Dollars a month and I'm. Going to hang up the phone for a sales call. I mean that to me is awful and then I finally got a phone. And I have them on the phone, I said. So now I understand. And I need to up my. It took I don't know how many times I've asked, but I had to say I need to know medically speaking silver platinum are they the same. Paying for it. Finally, after about three times, she said yes they are and I said well, I appreciate you documenting that on the record. One of the one of the one of the conversations in Washington and I've been involved with other senators is creating a a a copper plan. Very basic in coverage, but there's a lot of risk. I mean that's one of the options, but it's whether people I think the important thing is that people understand what they're getting and not yet. can you back up? The plan that we. It would essentially be catastrophic. Dollar was a medical student at the same coverage as long as they pay whatever it costs to get that would be the one and I'm not saying this is anything that anybody's gonna do, but it's a way of of of dealing with the the high cost of insurance, but it basically means people are self insured for. Is that it doesn't hurt? We're going back and I mentioned I listed the essential elements of the Affordable Care Act and I should have one of the most important preventive care a free annual checkup. That's that's a really important well. we're just about out of time normally I would keep talking. but for some reason, the airline flies that are fair plants even if I'm not there so I have to. it seems to me sort of sum up a little bit We've identified a whole lot of problems with the health care. But repealing the prot, the preexisting condition provision. Sure, as hell won't make it any better, we will certainly make things worse for a lot of people and catastrophic. Yes, I I say that the witnesses in Washington. we can't record a knives. so yes, Amen. What's up well. Thank you all very much for coming in and this is very helpful and well. For my work and don't let this be the end of the conversation. If you because you're on your way home and you think of things I wish I'd said or something Send it along. We'll get to that so if you've got something with your hand it to Patrick, you're going down with me. are you on the plane? I'm playing tonight playing out there so but seriously I mean this is it's crucial and frankly in Maine, it's gonna get we're sort of a head of the game in the sense of being the oldest state of Union, so a lot of these issues are gonna be coming in sooner than other places. Charlie I really value your perspective. I appreciate you being here. let's let's keep in touch. Okay. Thank you. Thank you.