Transcript

Diabetes Isn’t a Death Sentence, If You Can Afford It | Emmabella Rudd | TEDxFSU

[Applause] at the age of five my life would forever be changed when the doctors told my parents and i when we arrived to the hospital that if i had not made it that day i would have not made it through the night i was five years old and a kindergartener and i loved school i was ecstatic healthy but all of a sudden that changed i recall being on my first kindergarten field trip and as as exciting as that was um all of a sudden i was extremely parched and my mom was on the field trip and she looked at me and i told her i needed water immediately my lunchbox was at the bottom of the bus but i needed it immediately as soon as she found me a water bottle and as soon as i pressed it to my lips i guzzled the whole thing down another parent that was on the field trip she looked at my mom and said gosh how long has this been happening for she said gosh only a couple of weeks and she said to my mother this is a sign of type 1 diabetes and my mom said that that can't be true that can't be it we don't even have family history and just a couple of days later i was at a friend's house and the same thing happened again but this time they gave me a juice box and just within minutes of having that juice box i was throwing up profusely my mom knew something was wrong she took me to the pediatrician and as soon as i sat on that scale i weighed 35 pounds at five years old they started running vitals on me and told me that they were gonna call us back if anything crazy showed up and it did indeed they did they saw that my blood sugar was extremely high and they told us we had to get to the hospital immediately my parents quickly made arrangements for my two other siblings and we drove a couple hours down to indianapolis indiana where we were living at the time and on the way there they called our family and said if you're not here soon we're going to send an ambulance after her as soon as i got there just being five years old i was crying upset they were holding me down as they were putting shots taking blood draws out of me and as a five-year-old girl i just wondered what did i do to deserve this what possibly could go wrong for me to hate shot everyone hates shots at a young age well my worst my worst fear just had come out i went from being a carefree child at the age of five to now having a disease wage a war on every organ in my body i went from having to just be able to eat whenever i wanted to giving shots testing my blood sugar every two hours and that week we spent in the hospital my parents practiced giving each other saline shots just to learn how they were going to take care of myself now what even is type 1 diabetes so type 1 diabetes is an autoimmune disease where your body attacks your pancreas killing all insulin producing cells an insulin is a hormone that allows for sugar to enter the cells and go through the process of producing energy for the body at the time i was going through this process where no beta cells were left and i had no insulin in my body so without insulin and when i was consuming carbs i would get extremely sick and how does one develop type 1 diabetes um as i mentioned earlier i have had no family history of the disease and in fact only 10 percent of people living with type 1 diabetes have a family history of the disease now if you have the genetic marker specifically located on chromosome 6 and interact with the triggering environmental factor such as you have another autoimmune disease you live in a northern climate you have a viral infection you drink cow's milk at a young age you can in fact have a higher likelihood of developing type 1 diabetes and in fact i did have the rotavirus at a young age now that week we spent in the hospital i was trying to look for the good and everything and so were my parents and they um told me that they were going to take me to the children's hospital in indianapolis indiana and that's what i was looking forward to and um the first time we were there that was going to be the first time i had to test my blood sugar in public the two hour alarm went off and i looked to my mom and said it's time and we have to go to the bathroom because i'm not testing my blood sugar in public and she looked at me and she said emma but there's nothing to be ashamed of you have you know had something awful happen to you but it's not your fault it's something you know we can make you know it's not your weakness and that really set the tone moving forward and how i was going to live with this disease and not hide it and show people you know as a young girl i can do anything and everything despite having this autoimmune disease and adjusting back to school you know wasn't easy but um every meal now i had to have an insulin shot it was one before breakfast one before lunch and one before dinner and my mom came to school every single day when i was in kindergarten giving me an insulin shot right before lunch i remember her sitting at the kitchen table counting out exactly 50 pieces of goldfish to make sure that i got 15 carbs and not anything more or anything less and that was our reality additionally as i had mentioned every two hours we had to check my blood sugar and this resulted in also all times of the night believe it or not even my blood sugar was low and i was sleeping my mom or dad was able to stick a straw of juice box in my mouth and i sucked it down while i was asleep so you know we did we did make adjustments and adjusting to this disease but it was almost like i was an infant again it was almost like they were waking up every two hours to make sure i was just alive now as i grew older and as i you know moved here to florida and um got to my first year of being back and well excuse me being i'm a fourth grader a lot of people didn't really understand type one because the school i came from everybody knew what type one diabetes was and so i really wanted to educate other people so i started doing educational presentations and when i entered the sixth grade right before school started i sent an email to my principal and i also sent it to my guidance counselor saying i really want to do an educational presentation at my middle school and then the first day of middle school you know middle school can be hard for everybody but she pulled me aside the first period and said imabella do you really want to do this educational presentation do you really want to be known as a girl with diabetes and that shook me and took every little piece of what i had been fighting for out how could i move forward with someone who or something that maybe every every student i was you know going to school with would think there's a diabetes girl and that made me question everything but just a year later i applied to children's congress and i went to capitol hill to advocate to my legislators about the importance of type 1 diabetes funding research and education and we advocated for the special diabetes program which funds 150 million dollars to diabetes research every year and when i found out that exact policy i was there advocating for and along with others students and kids i was ecstatic and i realized this was my passion and government policy related to diabetes this is what i needed to work on and then i went back to that middle school and i did do that educational presentation thank you now every year along with my mom and other diabetes advocates we go to capitol hill and advocate for important issues that threaten the type 1 community and also type 2 community and we work to gain their support in advocating for these measures so why why is diabetes advocacy so important so shortly after um being you know diabetic for one year i switched to an insulin pump and this was the first insulin pump i was on it was incredible instead of having to do shots every single day i only had to change my insulin pump every three days so that was one shot i started to prick my fingers and still have the scabs of course but this was a life changer now today i wear another insulin pump which i'm wearing right here and it's incredible it um it's just has a tube it gives insulin every day or every minute i'm up here and i've got an insulin i've been talking to you and also it connects to my constant glucose monitor which i wear this is my constant glucose monitor i wear my arm and you can't see it because i'm i have a long sleeve on but this monitors my blood sugar 24 7 using a little microchip under the skin and it's been incredible and i was able to try the first constant glucose monitor back in 2008 and it's improved so much since then and that's all because of research dollars going to improve the lives we as type 1 diabetics have a shorter lifespan and these technologies will make those lifespans much longer and it it's just a relief and of a burden that diabetes places on you and additionally this constant glucose monitor actually connects to my iphone and i can share this to anyone i'd like my family members my friends and it relieves some of that burden that i'm not always fighting this disease by myself additionally um shortly after i was diagnosed we got involved with the juvenile diabetes research foundation and started fundraising we made a walk team immobile as believers unicorn on the front me and my my passion we were able to just organize and get people out there to support us in our mission to try to find a cure for type 1 diabetes and um that happened the first year i was diagnosed we got over 120 people out there and raised over 10 000 dollars just in that first couple of months i was living with this disease and additionally they invited me to go and my family to go to congressman donnelly's office and meet with him and share our story so my question to you are research dollars the only issue when it comes to advocating for diabetes i want to welcome you to your neighborhood pharmacy in the united states where big pharma places a price on my life on your life and also on the vial that keeps us alive this is insulin and i need it to stay alive and every other person with type 1 diabetes needs it as well currently in the u.s this is manufactured for two to six dollars and it is up charged to 250 to 300 dollars of vial this has led to people rationing the drug choosing between their food their rent their electricity water bills for this for this drug that stays that keeps them alive one in four people according to gale diabetes center rations this drug currently in the united states our health care system in the united states is broken and due to free market pricing the united states lists drug prices have become the highest amongst all developed countries on average the us pays 50 percent more in health care than any developed and regulated markets across the world so insulin hasn't always been expensive why is it expensive now these companies that manufacture the drug use patent evergreening there's a lack of generic insulins like other pharmaceutical drugs you could just probably get a cheaper one that doesn't exist with insulin there's pharmaceutical benefit managers that exist in wholesalers which price the drug to you and they price it higher so that they get a check in their pocket there's also a thing called price fixing where individuals price the drug based on what other corporations are pricing it at and lobbying in the big three which i will speak about in just a second only three companies supply instant insulin to patients in the united states and these companies make up 90 of the global insulin market resulting in they can do whatever they want why why should you care why should normal you know people that don't maybe necessarily rely on prescription drugs to stay alive worry or care about this well according to georgetown's health policy institute 66 of u.s adults use prescription drugs so that could be you that could be your spouse that could be your child that relies on a drug to stay alive that is currently being priced gouged in the united states so what do we do what do we do about it when these corporations are taking advantage at the age of 16 i was fortunate enough to work on with the senate in the house to work on my own bill that i was really passionate about working to bridge the gap between patients and also physicians who may not realize the symptoms of type 1 diabetes because as i mentioned they're very subtle and very very much go misdiagnosed so i was able to work on that and that was filed in the state and the house or the state and the senate and that was amazing it made me realize you know i do have the power to speak up and share my opinions about policy but then additionally my first semester here at florida state university i was able to work with senator janet cruz who's been the sponsor of the insulin bill for the last three sessions and she and her office asked me to look at this bill and give my input on how i felt about it but there's still a reason we are working today unfortunately pharmaceuticals lobbying spent 353.94 million dollars lobbying our government last year they use these expensive drugs these expensive therapies to fund their own agenda and interest back into the price and to guard their price now you know when we first started this first session on the first insulin copay cap here in florida um we were really excited because the senate passed unanimously within the first committee and then we turned to the house side and the house side the first committee was supposed to go through was a chairman who's actually an emergency room doctor and we were we were excited how could an emergency room doctor not understand the necessity of insulin being affordable because just hours without insulin you can end up in a fatal situation and he refused to hear the bill he refused to hear the bill an emergency room doctor refused to hear the bill and this confused me confused the rest of the advocates so i did some research he received twenty eight thousand dollars from pharmaceutical and health products twenty seven thousand dollars from lawyers and lobbyists and twenty four thousand dollars from insurance companies and overall 127 000 from just health in general if this doesn't go to show you that our health care system is broken then i don't know what will we need change a hundred years ago the co-discoverer of insulin frederick banting said that insulin does not belong to me it belongs to the world and so he went and sold insulin the patent of insulin to the university of toronto for one dollar and the same wish of his does not exist today now i want to leave you with well you know how can you guys all help you know i whether you have a connection with type 1 diabetes or not share spread the word write to your legislators ask them why they aren't capping the price of insulin why aren't they regulating this or in turn run for office sponsor your own legislation and this goes for any issue that you're passionate about because truly the at the end of the day patients are going to win this fight because insulin deserves to be for all and insulin is a human right as long as as well as healthcare so thank you [Applause]