How Diabetes Patients can Transform the Diabetes Pandemic | Karin Hehenberger | TEDxLugano

so I grew up in Sweden and into a family very strong family where athletics and academics were emphasized and I excelled at both that came easily for me at the level that I was playing tennis on the Swedish national team at the age of 14 and 16 so nothing really could have prepared me for the shock of being diagnosed with type 1 diabetes the summer I was turning 17 my family reacted well to this we accommodated our diet change somewhat and I made two decisions two important decisions one was I was going to learn as much as I could about the disease which meant that I was determined to go to medical school and secondly I was although I was learning about it I was not going to let anyone know because I saw this as a very big deficiency really a failure of contracting a disease that was really not my fault so I continued to really excel in academics and doing what I had done in the past but would focus on finding a cure for diabetes and I also excelled at my control in diabetes my blood sugar levels were good and I stayed very much on top of my disease so this was for the first ten years I completed high school and then medical school and even got a PhD in diabetes I was very committed to this space and but during that time I also got very tired of constantly managing this disease and being very much alone with the disease since I wasn't going to admit to anyone else that I had this deficiency so when I moved to the US which I did from Sweden after medical school in my PhD to continue to work in the space and from there on I continued on Wall Street and in a in a company that went public on NASDAQ I really lost my way because I didn't want to live any longer as a patient I to have a life I didn't want to continuously measure my blood sugar levels and I didn't want to accommodate to everything else that other people did not have to do on average a person with diabetes has to make an additional 200 decisions every day and you can imagine in a normal life you have to make a lot of decisions so this was taking an extra toll on me and for some reason I took a break and and this ended up being a little bit of a problem on my body it ended up being such a problem that I found myself in a hospital bed really with the need to get a kidney because my kidneys my eyes my micro vascular system had taken a very big toll from probably having a genetic predisposition to getting diabetic complications but also because of this somewhat under management of the disease that happens very often actually still in this day and age so I was very lucky my family came together and my father donated a kidney to me this was now seven years ago and nine months later I got a pancreas transplant so if the kidney saved my life my pancreas transplant really transformed and made my life worth living again and two things happened again at this stage in my life one was that I had no option but coming out and really letting people know that I had a problem I had the disease I didn't only have the disease but I had the complications of diabetes and secondly I decided not to just focus on learning so much about the disease and working in the financial and and in industry side of the disease but I wanted to really share with people what it's like living with the disease and helping others further so I know personally that diabetes is a disease that kills it cripples there is no vaccination there is no cure and it is progressive it's hard to live with those facts is in fact diabetes is still the most common reason for kidney failure in the developed world it's the most common reason for - and for non traumatic amputations if you have diabetes you have two to four times higher risk of heart disease and stroke so this is a hard disease to live with it is not only a disease for the Western or for the developed world it is a global pandemic actually 80% of all cases with diabetes are right now in the developing world where the resources are obviously less so in the country where I'm currently residing in the US there are 29 million people with diabetes there another 86 million with pre-diabetes of which 30% will convert to diabetes there are two kinds of diabetes type 1 which is what I have which is an autoimmune disease often diagnosed in children or in teenagers it is autoimmune which means that the immune system of the person attacks the very cells that produce insulin so there is a complete insulin deficiency when the person is diagnosed and you will need insulin for the rest of your lives type 2 diabetes is the more common disease which is a 90 percent of the cases and there it's often diagnosed in elderly people and people are somewhat overweight so what does the world do about this disease well the doctors are often overwhelmed and they are losing really the battle because they're not paid enough for the disease because this is a disease without real procedures it's more about education patients are often not compliant because they're tired of battling this disease on a daily basis and society sees it as a disease that is more of a lifestyle problem and patients are often to blame for the disease and therefore there's a perception that the disease is flawed and as we know perception creates reality and this is what see now in the diabetes industry and when I talk about diabetes industry is both the caring industry as well as the manufacturing industry so what we're seeing here is that the number of patents generated each year coming down money raised is going down new companies in the space are less and less and there are fewer diabetes doctors for the companies in the space the cost for drug approvals increasing at the time from discovery to market increasing and therefore the diabetes industry is hurting so what are we going to do about this well my opinion it's really up to us the patients we need to take responsibility and we need to start acting we need to be less of a victim and be innovators and teachers and get involved that means that we need to help doctors we need to be telling doctors what it's like living with the disc disease why compliance is so low and we need to start force amplifying they're not enough doctors to take care of all the people with diabetes therefore we can as patients be peer-to-peer mentoring and help other patients overcome some of the hurdles when it comes to the healthcare industry we should not just be waiting for new solutions that may be presented to us but we need to be seen as resources we are the evangelists we are the consumer we are the client we need to be putting pressure on the healthcare industry so that better products are coming out and products more amenable to people like us we can also get involved in regulatory approaches and reimbursement so really enable products to get to market and not just be in the pipeline's supporters here I include parents relatives friends but also people who have no connection to diabetes it's our obligation to speak to them and to educate them so that the perception does not continue to create a reality that is flawed entrepreneurs this is a favorite topic of mine because I do believe that the patients are the ones that can best identify needs and therefore when we have a need we can create solutions every person on this slide is an individual who is an entrepreneur who's also a person with diabetes and they've created a product or an entire company and this I think is a really good way for patients to get not be victims but actually benefit from the fact that they have the disease because they can create even more innovative products and be committed to the space so what about this all looked like how do we put it all together and especially how do we create future wealth well I think the diabetes pandemic we've shown is here it's causing human suffering it's impacting society I used to think I was alone I didn't share with anyone that I had this disease but now I know there's so many like me there's so many people out there and what we need to do is to connect we need to inspire each other so that we can impact the Diabetes ecosystem we can do this through being patient entrepreneurs creating new products and solutions if we are mentors or speakers we can engage in speaker series and improve societal understanding or peer to peer mentoring and improve the compliance for other people taking the products we want to be involved with a health care industry to create more relevant products then we can be engaged it through patients panels or even directly with the healthcare companies they are embracing that because we're the customer regulatory pathways and payers we can be engaged in patient advocacy and really push that forward as a patient public figure I think we have an obligation to try to generate more interest for this space and by having more interest there will be more money and be more talent so my call for action today is for everyone to get involved to take responsibility because together we can solve the diabetes problem

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Views: 117,145

Rating: 4.3164558 out of 5

Keywords: TEDxTalks, English, Switzerland, Health, Disease, Illness, Medicine, Pandemic

Id: -_QTZU0e1_s

Length: 10min 40sec (640 seconds)

Published: Wed May 11 2016