Beating Diabetes

Diabetes is a tough disease to live with – I know this first hand. I was diagnosed with Type 1 Diabetes (T1D) the summer I was turning 17, and it changed my life. At the time I was a competitive athlete, playing tennis on the Swedish National Team, and an excellent student. Nothing had prepared me for this diagnosis. We did not have diabetes in our family, and I had no friends with the disease. I saw it as a defect and a failure. It became something I would hide from everyone for many years.

Almost twenty years later, I received MD and PhD degrees from the Karolinska Institute, a post doc at Harvard, and worked on Wall street. I had taken a company public on NASDAQ and become a partner at a Venture Capital Fund, but I was really not feeling well. The spring of 2007, 18 years after my diagnosis, my kidneys and eyes were failing, my blood pressure was uncontrollably high and my hemoglobin was so low that I required blood transfusions. What happened? Well, diabetes had slowly but surely destroyed my system, and was on its way to take my life.

This was when I realized that I cannot hide my condition, and that the treatments on the market are not good enough – there must be a better way.

Fast forward 10 years, I had now been the head of Metabolic Strategy at JNJ, had a senior role in the world’s largest diabetes foundation, JDRF, and had run clinical trials in diabetes for a biotech company that I had helped take public. Most importantly, I had gone through two transplants and received a pacemaker. The pacemaker was placed due to repeated fainting episodes that would happen inconveniently, and often risked major injury and even death. Before the pacemaker, my heart would just stop because of diabetes nerve damage and complete body fatigue from all the injuries I had endured. I was also given a kidney from my father that saved my life, and a pancreas transplant from a deceased donor. I finally had a new chance to make life worth living again.

It is 2017. I am a strong, happy and very determined woman; but I am far from done. My company, Lyfebulb, is here to make a difference and I will not give up until we have accomplished our goals.

Diabetes is not a lifestyle disease.

It is a disease that slowly but surely kills, cripples and debilitates. I wish it were cured and abolished from our planet but in the meantime we need to address it much more aggressively.

Our current landscape of companies is driven by a few very large ones that have provided patients with the life-saving drug, insulin, since its discovery in 1921. These companies, namely US-based Eli Lilly, Danish Novo Nordisk and French/German Sanofi, are enormously dedicated to diabetes, patients and to research. The developments over the years included using insulin used derived from pigs and cows that was modified by the addition of zinc in the 60s to influence the absorption of insulin. Then, in 1977 Herbert Boyer of Genentech developed the first engineered insulin, so-called “human insulin”, and in 1982, Eli Lilly did a deal with Genentech and started selling Humulin. Insulin analogs were introduced in 1996 and 2001, which triggered higher pricing for the products, although marginal improvements in diabetes measurements such as long-term glucose control (HbA1c) were achieved. The price of insulin rose by a multiple of 25 from the 70’s to 1996, and in 2001 the price increase had risen to 35 times that of bovine insulin. At this point, Lilly owned the US market with an 85% share, and Novo Nordisk was mostly successful in Europe. What happened in the past 10 years is remarkable. The insulin market has tripled, currently being in excess of $30B, from $7B in 2006, and predicted to approach $45B in 2021.  The insulin market is currently one of the largest therapeutic markets in the pharma world, and before its patent expiry, Lantus (Sanofi) was among the  World’s 5 largest drugs by revenue and clearly by profit. Even after generic entry, Lantus is among the top 10 at almost $8B sales.

So have we beaten diabetes in those years? No.

Being diagnosed with T1D is no longer a death sentence, but we are far from done. Despite having the best doctors, education and access to care, I struggled with control and eventually suffered from microvascular complications clearly driven by diabetes. Insulin, for me, was not enough and I am not alone. Diabetes is still the most common cause for blindness, kidney failure and amputations in the developed world, and increases the risk for heart attacks and stroke by about 4 times. It also leads to depression, cognitive dysfunction, impotence, dental disorders and various other issues. It truly attacks every cell in the body and accelerates the aging process.

What is happening in the innovative landscape, such as academia and small companies, is not reflective of the severity of the disease.

While we are seeing major influx of capital and talent into important areas such as cancer, immunology, and infectious disease, we are not seeing the same in diabetes. The average endocrinologist is above 60 years of age. Young scientists are not lining up to do research in diabetes, and funding into disease organizations for diabetes is going down as evidenced by JDRF research funding. In fact, 2015 revenues were down by $84M from 2008 and $26M from 2014 (http://thejdca.org/jdrf-financials/).

The for profit side is not much better. Venture capital is not going toward diabetes, and the new IPOs are not diabetes companies. An analysis done by BIO, showed that of all private financing only 5.7% went to metabolism, while 24.2% went to oncology. Only 5.3% of IPOs were in the metabolism field, while 22.8% were oncology related (https://www.bio.org/articles/emerging-therapeutic-company-investment-and-deal-trends). In the established company’s deal-making allocations, metabolism did even worse, with 3% of all licensing and M&A deals being in metabolism, while 26% went to oncology and 28% to infectious disease.

There are some great examples of success in our space where risk takers have made money and delivered new therapies and devices to market that have made a differences. We applaud investors in, for example, Dexcom (Don Lucas) and Animas (HLM management), companies that brought us continuous glucose monitoring and consumer-friendly insulin pumps.

Currently, we believe in the future for several companies, for example the ten finalists in the Lyfebulb Novo Nordisk Innovation 2016 Award competition including marketing veteran, Jeff Dachis’s OneDrop, John Sjolund’s Timesulin and newcomer (and winner) Brianna Wolin’s FidYourDitto. http://lyfebulb.com/lyfebulb-innovation-award-at-the-innovation-summit/. Recently, JDRF, announced the launch of their T1D Fund which will aim to invest donated funds into companies and their first bet was on BigFoot, a company run by former JDRF CEO, Jeffrey Brewer.  

What is also interesting when you reflect on the diabetes industry is the lack of smaller, public companies that are willing to place bets on emerging technologies and settle for revenues that are less than blockbuster quantities. There are less than 20 public diabetes companies in the US, with a majority being very large, and at least half of them in devices (http://investsnips.com/list-of-publicly-traded-medical-equipment-and-device-companies-focusing-on-diabetes/).

These kind of numbers do not generate new drugs/diagnostics/devices to help improve the quality of life for people with diabetes. The total number of people with diabetes is growing exponentially. There are 29 million diabetics in the US, 86 million with prediabetes, and a worldwide prevalence of over 400 million. The cost of diabetes in the US is approaching $300B, up from $245B in 2012 (http://www.diabetes.org/advocacy/news-events/cost-of-diabetes.html?gclid=CMPI_KCe4NECFQ6BswodnE4PlQ ). Interestingly, the cost is not driven by the drugs that treat diabetes (12% of total), but by the cost for complications and hospital care.

So what can we do about this relative lack of innovation and disinterest from the medical and investment communities about a disease that is taking lives, crippling people, and causing enormous damage to our economy? In my opinion there is a big need to change our attitude toward diabetes. Type 2 diabetes is not a lifestyle disease that can just be addressed with diet and exercise. Type 1 diabetes is not a disease that can merely be addressed with insulin and better glucose measuring methods. More insulin in type 1 causes more difficulties in regulating sugar and a greater likelihood of complications. Not addressing the underlying problems with type 2 diabetes will never solve the problem of why certain families have both obesity and type 2 diabetes in every generation.

I was wrong when I hid my type 1 diabetes for almost 20 years, and I was wrong when I tried to show that diabetes did not affect me.

Type 1 diabetes does affect the person and we must take it seriously. I know that organizations advocating for diabetes often try to portray success stories of people running fast, jumping high, climbing mountains, and winning trophies, but that is not the norm and those people would be winners with or without diabetes. Before I was diagnosed with diabetes I was the third best tennis player in my country and the top student in my school. I was a competitive person and diabetes did not change that, it actually drove me harder, but my body eventually told me to stop.

We must encourage financial institutions such as venture capitalists and banks to invest more money into companies doing innovative work in the field. We must encourage research in academia, and we must push the large companies that are doing well selling drugs that save our lives. Only with a newfound interest in the area will we see talent moving to diabetes, and only with the clear articulation of an unmet patient need will we see the overall landscape shifting towards addressing the opportunity. Investing in metabolic companies is a target for Lyfebulb and we hope many will join us. It will bring both health and wealth to our constituents.

Together we can beat diabetes.


How Camp Ho Mita Koda Has Impacted My Life

A lot of things have impacted my life, few as much as Camp Ho Mita Koda (HMK).

I first went to camp sometime in the late 1980’s for a picnic that was put on by the doctors and staff at Case Western Reserve University and Rainbow Babies and Children’s Hospital. I was a few years into my diagnosis of type 1 diabetes and was a participant in the Diabetes Complications and Control Trial (DCCT), a landmark study looking at the long term effects of tight blood glucose control vs. “standard” treatment which at the time was less intensive. The staff thought it was a way for some of us participants to meet and to thank us for our dedication and commitment to this research study. This first day on the camp grounds felt very good to me. I had been an advocate of outdoor activities my whole life and this was the perfect “playground”. I had just been in the process of changing careers and was recently accepted into the Ursuline College School of Nursing and asked Dr. Saul Genuth, the DCCT chair, how I could get involved with camp. He linked me to Dr. Marc Feingold, the medical director at camp at the time, who set me up as a dispensary aide for the next summer during my freshman year at Ursuline. Little did I know that almost 30 yrs. later I would still be involved in the special place that became my second home.

The first five years at camp were the best. This is because I was able to spend nine weeks each summer physically at camp. The second year I was asked to be the dispensary (healthcare center) charge. I, along with a nurse named Betsy Brown, who was my mentor and a DCCT coordinator, interviewed many candidates and we hired my staff. I worked with camp director and storyteller Rich Humphreys and we ran a capacity camp for three years. During this time, I has some of the best times of my life, meeting friends who are still people I communicate with regularly today including Rich Humphreys, who remains one of my best friends. Rich received the Lilly 50 yr. diabetes award eight years ago and is still a role model for so many youngsters with type 1.

In 1993 I met a dietary intern from Metro Health Medical Center in Cleveland who was on her final rotation of her internship.

We spent two weeks together at camp which began a relationship that ended up in marriage five years later.

We were married at Notre Dame College of Ohio and had our wedding reception at camp HMK on May 23rd, 1998. It was truly a special day and I can’t believe it’s been 19 yrs. The final year of the five that I lived at camp, Rich decided to take his three teenage children around the county in a motor home so I directed camp that year. I had the best staff ever and will never forget that summer. It was truly magical.

The next 15 or so years I’ve remained involved with HMK in several different roles. I was the camp health care manager and along with medical director Dr. Douglas Rogers from the Cleveland Clinic Children’s Hospital, kept the program safe and effective working through all of the changes to diabetes management. I’ve continued to direct other camps along the way; we did teen weekend for kids too old for camp (last done in 2016), volunteered for a camp for kids with cystic fibrosis, directed type 2 diabetes camp for seven years and directed a camp for kids with PKU, an inborn error of energy metabolism for 14 years. I continue to sit on the steering committee and help out whenever I can. My wife Jill and I now have three teenage daughters who grew up at HMK.  I would often bring them along when they were younger and put them in cabins with the campers, it was very special to them who obviously wouldn’t be on this earth if it wasn’t for HMK. I could go on but need to run to work. I am currently a certified diabetes nurse educator at Case and Rainbow where I started currently coordinating diabetes clinical trials and am still a participant in the DCCT/EDIC study.

Camp Ho Mita Koda was established in 1929 as the world’s first summer vacation camp for children with diabetes.

It was founded by Dr. Henry John and his wife, Elizabeth (Betty) Beaman, on land that was originally their family’s summer cabin, in Newbury, OH. Dr. Henry John, a MD who graduated from Western Reserve School of Medicine (now Case Western Reserve University) in Cleveland OH, was also a founder of the American Diabetes Association and the first physician to administer IV glucose. He was one of the pioneers of insulin treatment for diabetes. Dr. and Mrs. John envisioned a summer camp where children with diabetes could learn how to manage their diabetes while enjoying the company of other children. In the summer of 1929, Dr. and Mrs. John took six children to their summer cottage and continued to direct Camp Ho Mita Koda for the following 20 years! The 72 acre camp now caters to children ages 4-17 with diabetes. Its management was recently taken over by a new nonprofit called the Camp Ho Mita Koda Foundation.

You can support Dr. and Mrs. John’s 88-year-old vision by visiting: http://www.chmkfoundation.org/

To participate in the Camp Ho Mita Koda Foundation’s first fundraiser please visit: https://rafflecreator.com/pages/15457/camp-ho-mita-koda-cash-calendar-raffle#

Facebook:  Camp Ho Mita Koda Foundation, @CHMKFoundation

Why We Are Launching a Diabetes Innovation Fund – T1D Capital by Lyfebulb

Lyfebulb, the company I co-founded with Dr. Steve Squinto, Venture partner Orbimed and Riccardo Braglia, CEO Helsinn, three years ago, is about to launch an early-stage Diabetes Innovation Venture Fund focused on breakthrough opportunities in autoimmune, insulin-dependent diabetes and other associated autoimmune diseases. Our goals are to deliver a superior return on investment and to remove the burden of autoimmune diabetes.

With Lyfebulb, we have created a community focused on chronic disease, and we are relentless in articulating the voice of the patient to bring forward better products, improve compliance and put pressure on industry to listen to the consumer.

Type 1 diabetes (T1D) is my particular problem, but I am not alone.

There are millions of people like myself, and even more who care about someone who has the disease. Most people have heard about diabetes, but many ask me, “isn’t this just a disease of the Western world, a disease that if we only ate better and exercised more, we would not have to worry about?” Most people perceive diabetes to be a less ”severe” disease than for example cancer.

Here are some facts:

  1. There are 29M people with diabetes in the US, and another 86M with pre-diabetes, of which 90% are Type 2 Diabetes (T2D), a disease of inflammation and insulin resistance, which initially can be treated with diet, exercise, and oral medications, is often diagnosed mid-life and in people who are overweight. 5-10% are T1D, a disease of the immune system, always requires insulin injections, and is most often diagnosed in young people
  2.  Both T1D and T2D present with elevated blood sugar levels, and are leading causes for blindness, kidney failure, amputations, and increase the risk for stroke and heart disease several-fold, are the 3rd leading cause for death in the US, and accounts for over $250B/year in spending. The burden T1D has on society, is disproportionate to its prevalence vs T2D

How has industry and the public reacted to these data? Well, the large and growing numbers of T2D patients have attracted multinational companies, scientists and media to spend large sums of money and time on solving the T2D problem. The reality is that the numerous drugs available for T2D are both insufficient and ineffective to keep people in range. There is a very large behavioral component to T2D, and without human as well as electronic help, patients do not take their drugs, do not change their diets, and do not exercise more. 

In my opinion, in T2D, we should focus more on incentive models to keep T2D patients in control and let the drugs that are on the market become easily accessible and less expensive. This brings about a shift for the pharmaceutical industry, which historically has led with an expensive new drug and cared less about the behavioral programs that must go with them. New models are emerging, with companies such as Fitscript (exercise), Wellth (employer-driven behavior modification) and Fit4D (force amplifying nurses to add the human touch), as well as companies, such as Livongo and Glooko, where the sugar levels are explained to patients and prompts are given so that people have a diabetes guide with them all the time. Community-based support is another way to go, and here OneDropToday has a great model, where the glucose strips are unlimited and the support comes from fellow patients.

For T1D, the body is no longer making insulin. Treatment may improve with behavior modification, but this is far from enough. Although insulin saves lives, it is not a Cure and causes major side effects such as hypoglycemia (low blood sugar), weight gain, and cannot completely remove the risk of late-stage complications such kidney failure and heart disease. No one wants to think about their disease all the time, but for a person with T1D that is the only way to stay in control. Some people argue that this control forces them to change their life for the better, allows them to focus on health, but I don’t think anyone would say no to a break from diabetes management if offered.

Companies such as BetaBionics and Bigfoot, as well as large companies such as JNJ, Dexcom and Medtronic, are working on fully automated systems that combine insulin dosing with glucose measuring, which theoretically could remove some of the burden of disease from patients with T1D and keep them safe. This has been called the “artificial pancreas project”, an effort that has been driven hard by the JDRF, and now has triggered multiple financial rounds and start-ups.

This is great for the T1D space, but it still is not a Cure.

I have already mentioned how the two types of diabetes are different. Now let us compare T1D to other autoimmune diseases, such as celiac disease, Hashimoto’s thyroiditis, Addison’s disease, MS, Rheumatoid Arthritis (RA), and Inflammatory Bowel Disease (IBD). In all these diseases, the immune system attacks part of “self”, i.e., part of the person’s own body, instead of attacking only foreign objects such as virus, bacteria, parasites or even transplants.

The difference between some of the autoimmune diseases, such as RA, IBD and MS, vs T1D, is that they have apparent relapsing remitting symptoms, i.e., the person gets worse and then better again, since the cells that are being attacked manage to regenerate. Over time, there is often a progressive nature to the diseases, but with new drugs, there may be some recovery and even fewer episodes going forward.

In T1D, the beta cells seem to be completely lost and except for a period in the early stages of T1D, often described as the honeymoon, one can never get off insulin. New studies, including those of JDRF’s nPOD project (led by Mark Atkinson), for example, have shown that we may have been wrong in many of our beliefs about the disease. For example, the amount of loss at diagnosis is much more variable than one thought. It is still difficult to show the dynamic nature of the disease since biopsies of the pancreas are not done readily.

What is next, I believe there are at least 3 main scenarios for T1D, where we could complement insulin therapy, even if we cannot Cure the disease immediately. A prerequisite for these scenarios is the earlier diagnosis of T1D. It is already possible to measure autoantibodies in healthy individuals and accurately diagnose beta-cell autoimmunity. It is possible to predict the decline of beta-cells and give us a timeline for the full-blown disease. In certain geographies, this method is already in place, for example in Southern Sweden led by Professor Ake Lernmark, Lund, and through TrialNet in the United States, led by Professor Carla Greenbaum in Seattle. Screening school children for beta cell autoantibodies has began in Colorado. The aim is to diagnose T1D at an early stage to have a better chance to develop preventive measures.

  1. Supplementing beta-cells with either embryonic stem cells, adult stem cells or transdifferentiated cells (autologous cells that have been converted to beta cells in the laboratory). The proof of concept has been shown through transplantation of cadaveric beta cells and pancreata, which renders the patient free of insulin. That option is not a viable one for all people, due to the requirement of immune suppressants, limited supply of beta-cells and pancreata. However, there are a number of laboratories and companies working on alternatives: Viacyte being the leader in embryonic stem cells, with academics such as Professors Doug Melton (Harvard), Bob Langer (MIT) and Camillo Ricordi (Miami) following. Orgenesis (ORGS) is a public company that is about to test its transdifferentiated (liver) cells in clinical trials.
  2. Addressing the immune system through combination therapies that halt the attack before a majority of cells are gone. This pathway can also be used in established diabetes to allow for lower insulin doses and thus an easier managed disease through reduced glucose volatility. There have been some failures here, but the field has moved forward through these experiences. Thought leaders include Professor Jeff Bluestone, UCSF, Professor Kevan Herold, Yale, and Professors Lernmark and Atkinson. Interesting approaches also include Dr. Alan Lewis’ DiaVacs and Professor Santamaria’s Parvus. We should learn from oncology and not be afraid of combination therapies!
  3. Through above mentioned studies of nPOD pancreas, it has been shown that beta-cells might be subject to waves of immune attack (much like other autoimmune diseases), with the time of diagnosis being a period of pronounced destruction. Beyond nPOD, studies of human islets suggest that regeneration of beta cells appears possible, in that at least three drugs have been found capable of inducing such actions. Professors Mathias Hebrok, USCF, Klaus Kaestner, U Penn, and Doug Melton have all ventured into this space.

Taken together, novel understanding of the disease pathology and the comparison to other autoimmune disease, suggest with earlier intervention and the right drugs (or cell therapy), we may be able to prevent the absolute dependency on insulin and even Cure T1D, and insulin-dependent T2D.

An absolute must, is to continuously improve our understanding of the human immune system. We need to explain why and how our immune system gets the signal to attack our own beta cells. It will be necessary to study people not rodents. This is where disease foundations such as the JDRF and government (the NIH) are doing incredible funding work.

I have a personal interest in making sure that we find a Cure for this disease in the not too distant future.

I had a pancreas transplant that “Cured” my T1D in 2010, and since then I have not dosed insulin. However, I am on very toxic immune suppressant drugs that have already caused several serious infections, they render me more vulnerable to certain kinds of cancer, and they cause minor side effects such as hypertension and nausea. I do not ever want to go back on insulin, but the prognosis for my transplanted pancreas is uncertain. At some point, my autoimmune disease will break through and kill my new cells. I also risk rejecting my pancreas since my body does not fully accept it as my “own”. The very drugs that reduce my immune response to this organ are also very toxic to my pancreas and each year, it develops more scar tissue.

I won’t give up until there is a Cure. I have seen what diabetes can do to people – as a medical doctor I have taken care of patients with wounds that won’t heal, eyes that do not see, and kidneys that require dialysis. I have seen young and old people who are depressed due to the constant monitoring and the loss of control and I have known people who died from the disease.

This is why we have decided to create a new kind of Venture Fund – T1D Capital – focused on T1D but solutions will be applicable in associated autoimmune diseases and insulin-dependent T2D. We will identify, invest in, and manage companies that are in the regenerative medicine and immunology space that will deliver breakthrough solutions for people like myself and so many others.

When It Comes To Fighting Diabetes, We Are Indeed Stronger Together

Let’s all unite for National Diabetes Day Nov 14

Diabetes is a disease that can make you feel very lonely – it requires self-discipline, behavior modification, and a whole lot of courage. Diabetes never leaves you, there is no vacation from it even if you sometimes just want to forget about it!

I spent many years controlling my Type 1 diabetes (T1D) extremely well and then some years dismissing it. I wanted to have a life, not just be a person with diabetes. I never asked for help – my attitude was that I was going to solve the puzzle and get rid of this terrible condition once and for all. After studying the disease in med school and as a scientist, I realized it was not so simple. The people with diabetes who I encountered during my education and my early years with the disease, were mostly very sick, since the people I saw had ended up in the hospital where I was studying or working. I had absolutely no interest in connecting with them since I could not relate to them. I was, frankly, afraid of them, and surely not inspired or comforted by them. When I was working as an intern in the ER of the Karolinska Institute in Sweden, or as a post-doc at Boston’s Joslin Diabetes Center, I saw individuals who were struggling with foot ulcers, blindness, kidney or heart disease on a daily basis, and my mind became more and more set on not disclosing that I was one of them.

After leaving medicine and working in the life sciences industry, I stopped paying as much attention to my disease since the long-term consequences of the disease seemed very far away, while the near-term issues, such as having to fear low blood sugars and having to tell colleagues to accommodate to my eating habits were less desirable to someone living in the fast lane! Yet again, I did not relate to anyone with diabetes although there were several people who were going through what I was living and doing it well!

I now realize that I was wrong. Relating to others, opening up about issues in addition to strengths and weaknesses makes you stronger and it helps others as well as yourself!

Today, on National Diabetes Day we embrace fellow individuals living with diabetes, we welcome anyone who wants to share their story, and we encourage families and friends of people with diabetes to open up about their struggles.

At www.Lyfebulb.com we realize that this fight against a disease that is becoming a pandemic is not one to fight alone. We lead by example, fostering partnerships with fellow organizations to increase our reach, to expand our capabilities, and grow our community. We have also embraced mutual and diverse partners ranging from the global diabetes leader, Novo Nordisk for our Innovation Awardfocused on patient entrepreneurs, to art galleries Contini Art UK in London and Unix Gallery in Chelsea to showcase a performance by type 1 diabetic Omar Hassan on November 17th, to specially curated diabetic-friendly menus at Brasserie Ruhlmann in Rockefeller Center and Le Colonial in Midtown. We have also partnered with Punch Fitness Center on the Upper East Side of Manhattan to encourage exercise. In addition, we advise a number of smaller biotechnology and healthcare IT companies in their path toward improving the quality of life for people with diabetes, and we encourage entrepreneurs who are deriving their motivation for innovation and business-building from their own experiences with disease.

Today is a day to celebrate our unity, to celebrate our fight – but also to Live Lyfe with and without diabetes!


This blog was also featured on The Huffington Post on November 14, 2016.

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