I like my endocrinologist, but she's not enough

Every day, patients with type 1 diabetes must check their blood sugar, take insulin, monitor their food intake and exercise to keep their blood sugar levels in a healthy range. Their pancreas has stopped making insulin due to a reaction from the immune system. The result is a chronic condition that must be managed and can be very physically and emotionally taxing. Most people with type 1 diabetes see a specialist called an endocrinologist to help with disease management, but for many, bi-annual doctors visits are not cutting it.

A blood test called the HbA1c (or A1c) is administered at least twice a year to patients with diabetes to measure their average blood sugar control over the previous 3 months. The American Diabetes Association recommends an average A1c of less than 7.0% for patients with diabetes. But, based on the reports from 25,000 individuals with type 1 diabetes online at T1D Exchange, fewer than 1 in 5 patients met this goal at their last appointment.

Many studies have linked lower A1c numbers to a decreased risk of developing complications like eye, heart and kidney disease later in life. A “normal” A1c result for people without diabetes is between 4 and 6%. People with diabetes are encouraged by their doctors to keep their A1c readings as close to this range as possible. Of the patients with type 1 diabetes in the T1D Registry, the average A1c was 8.3%. Somewhere between the recommendations and reality, management of type 1 diabetes is not meeting the marks for most patients.

To put the onus of responsibility solely on the individual is shortsighted. Numerous studies have linked blood sugar control, measured by A1c, to factors like socioeconomic status and ethnicity. This suggests that there are factors at play that go beyond patient behavior. Use of technology has also been shown to improve diabetes control. When given access to these resources, as well as high levels of information and support, people with type 1 diabetes can and do experience better control.

Steve Richert is a rock climber, educator and founder of LivingVertical – a website and community with the mission of changing the perception of diabetes and its limitations through films and climbing projects. As a type 1 diabetic and type 1 diabetes advocate, Richert shares personal insights around his experience with A1c and where he feels care for type 1 diabetes can be improved.

Blood glucose measurement: getting the whole picture.

“The A1c is like a report card. People put a lot of stock in those grades,” said Richert. “We forget how many people are completely in the dark about their day-to-day blood glucose levels.” He’s right – the A1c is like a report card because it summarizes the past three months in one number. It does not give the patient information about their day to day or hour to hour blood glucose levels, which are key to maintaining control. These numbers give someone the ability and information they need to earn a “good grade” or a lower A1c.

Indeed, only 7% of type 1 diabetics currently use a device that gives the wearer blood glucose readings every 5 minutes, called a continuous glucose monitor. Most rely on finger pricks throughout the day to monitor their blood sugar levels. Wearing a CGM has proven to be effective in bringing down A1c levels. Half of all participants in one study saw A1c decreases of at least 1% in the first 3 months of using a CGM.

Access to advances in care – like continuous glucose monitoring technology – is one part of why many people with type 1 diabetes do not meet A1c recommendations. In many cases, there are more and better resources out there than patients are able to afford or insurance willing to cover. Indeed, people who lack adequate insurance coverage are also more likely to report extremely low blood sugars or diabetic ketoacidosis, a serious condition that comes from very high blood sugars.

For Richert, access to technology falls into the category of “hard skills and assets” that patients need to succeed, but might not have. Put plainly, he feels that “people are missing their A1c targets because they have no idea what their blood sugar does between huge time intervals,” like the hours between meals or during sleep. “Not having a continuous glucose monitor,” he argues, “is like having someone take a driver’s test with a burlap sack over his or her head.” 

The importance of empowerment.  

In addition to the physical resources patients might be missing out on, Richert cites a psychological element to why type 1 diabetic patients fall short of A1c recommendations. For him, the second aspect to this issue is a lack of patient empowerment that comes from the medical treatment model. “Many people,” he explains, “won’t change their insulin dose or won’t change their diet because they are not empowered to optimize their own care.”

Because 1 in 14 U.S. doctors faces a lawsuit every year, medical professionals might fear giving patients the liberty to make their own care decisions. But, endocrinologists often don’t have the time or resources to devote more than 30 minutes every 6 months to patients with type 1 diabetes. “A lot of doctors would probably say, ‘I wish I could do better. I wish I could do more,’” to help type 1 diabetic patients, said Richert. When providers cannot devote enough time or attention to ensure the best outcomes and patients aren’t empowered to take control of their chronic illness management, patient care – and average A1c readings – suffer.

No one party is to blame for poorly controlled type 1 diabetes. Patients and doctors interact in a system that does not support chronic disease management. Advocating for doctors to promote education and empowerment is one way to bring A1c levels down and improve patient quality of life.

Where to turn when clinicians aren’t enough.

In the meantime, many are finding support elsewhere. “I really do think that the best solution is to outsource it [beyond clinicians],” Richert suggests. Many online communities, forums, and support groups around type 1 diabetes provide resources and advice from peers. These groups give people information and strength to take control of their diabetes management in a way that a doctor’s appointment might not. On MyGlu.org, a type 1 diabetes online community, “questions of the day” spark conversation around diet, exercise, and care options. Individuals share tips and insight for overcoming the day to day challenges of managing diabetes. Doctors should be realistic about their limitations and willing to connect patients to these resources.

Closing the gap between A1c recommendations and realities will require giving patients the physical resources they need, helping them to become empowered, and referring them to outside peer groups. Together, these strategies will enable patients to take control of their own type 1 diabetes management.

Bringing Home Local

I’m psyched to share with you guys that I’ve been selected to be a featured blogger for the Boston Local Food Festival. If you don’t have plans yet for September 20th, you do now! As described on the event website, the day consists of an “outdoor festival that showcases farmers, local restaurants, food trucks, specialty food producers, fisher folks, and organizations focusing on healthy food and fitness from New England”. Yes, please. In case you need further convincing: 

Participating in events like this one, it’s really easy to feel excited about buying locally and making sustainable choices. When the options are plentiful and the reward is (literally) so sweet and delicious, most of us love to make the choice that’s better for us and better for our environment. Unfortunately, if you’re anything like me, the difficulty lies in translating that energy into changing everyday habits. It’s not that I don’t want to always make the better choice, but more that I’m established in the choices that are comfortable to me. Convenience is so often king when it comes to where and what we buy ourselves.

And food festivals like the Boston Local Food Festival typically exist in space all their own. It’s easy to treat this as a fun one-time event where we eat awesome food, a great way to spend a Sunday afternoon. We might even learn a lot while we’re there - but it’s hard to translate those lessons to your everyday life. Why isn't that awesome, locally-sourced food truck parked outside my house all the time? 

Some enterprising folks have connected these dots, identified this need and are working to come up with solutions that make the healthy, sustainable choice the easy choice not only at the food festival, but when we return home as well. Tech can be used for more than pictures of cats and selfies (not that these aren’t worthwhile pastimes). MyMilkcrate is an example of a company trying to use tech to make sustainable choices the easier choices for all of us. Like a sustainable, local version of the “Yelp” app in your phone, MyMilkcrate partners with food retailers, dining, services, health and wellness, home and office, and community resources to create an online database of pre-vetted businesses. Consumers no longer need to do this research themselves to purchase responsibly, and have convenient access to these listings in a map-based phone app.

Something that I spend a lot of time thinking about is how the spirit of “tech”, the energy that surrounds the startup world can be applied to solve health problems. The “food system” is a massive, amorphous blob in my mind - difficult to conceptualize, impossible to control. And a lot of attempts at community health interventions are clunky, slow, institutional, grant-funded beasts themselves. Not to dismiss this work. It is often well planned, meaningful, and something I’m certainly a part of - but watching tech-based startups get creative, take risks and (sometimes) see great success makes me wonder how this same model might be applied to solve health-related issues.

MyMilkcrate creators seem to have had a similar thought process. While the app isn’t fully built-out for Boston yet, it does feature local businesses on the Cambridge side of the river. Users are encouraged and rewarded for living more sustainably. They have access to better information about the transparency of practices and standards of the businesses in their neighborhoods and are empowered to make healthier choices for themselves and the environment. I’m looking forward to MyMilkcrate as a phone-based platform to experience the Boston Local Food Festival before and during the event. Most importantly, I hope to see MyMilkcrate enabling visitors to take the same mindset and consumer practices home with them after Sunday, September 20th.

What We Talk About When We Talk About Diabetes

Never one to keep my mouth shut, this blogpost is in response to a really stupid tweet from Crossfit as well as a few responses to it including Steve @livingvertical and Anna Floreen for Glu as well as countless tumblr and twitter comments.

First….some numbers:

29 million Americans have diabetes - almost 10 percent of our population. Of the 29 million Americans with diabetes, only 5 percent of those have type 1. The vast majority of Americans with diabetes suffer from type 2 diabetes. The epidemic that our nation is facing in illness and in cost is associated with type 2 diabetes – so we talk about it a lot. And I understand this. the increase in type 2 diabetes associated with overweight and obesity (and processed sugar...the list goes on) IS a national health crisis. It is worth talking about, worth working to remedy. It is also the reason that in media channels, in pop culture, and in colloquial usage “diabetes” refers to type 2 diabetes.

Crossfit’s use of "diabetes" to mean type 2 diabetes in a tweet is not an exceptionally surprising blunder when you take into account that news outlets like the New York Times and the Huffington Post (take a look at these headlines) - even the CDC - do the same thing.

As type 1 diabetics, our first response is defensive - we bristle, we defend ourselves, we remind everyone that we couldn’t prevent our disease, we didn’t eat too much sugar and that we are healthy people, active people, athletes. We’re trying to get ourselves out from underneath the “diabetes” stereotype by reinforcing the differences between type 1 and type 2 diabetes. This is well founded. We are not wrong. I do this all the time. Sometimes I think there should be better, more distinct names for two separate conditions to try to alleviate some of this misinformation about type 1 diabetes. I’ve fielded all the classic questions and statements: “oh, did you eat too much sugar when you were little?” … “yeah, my grandpa has that”... or my personal favorite: “you’re not THAT fat!”. People are misinformed and it is frustrating and damaging to our community. 

Better health education and literacy that promotes the differences between type 1 and type 2 diabetes is one way to try to combat this. But this solution, while important, misses the more insidious underlying problem - that we live in a culture content to place the responsibility of “health” on individuals while systematically making people unhealthy. Removing ourselves from the stigma associated with “diabetes” by yelling “not type 1 diabetes!” does not alleviate the stigma faced by more than 27 million Americans with type 2 diabetes.

I agree with what some others have said that the crossfit ad does not come from malice but from well-meaning ignorance. (I do sort of feel like it’s coming from a self-righteous high horse of hyper-fit people who think they’re better than others because they already don't drink coke … but I digress) They aren’t wrong that sugar is bad and is certainly a contributing factor to our nation’s expanding waistlines. Obesity is a problem, sugar and our food industry are contributing to it. Rates of type 2 diabetes are rising, and not coincidentally. But we will not begin to fix these problems by stigmatizing a serious disease or by blaming people’s individual diet and exercise habits. When we write off the cause of “diabetes” to something as simple as “he ate too much sugar” we’re ignoring the nuanced and complex nature of both of these diseases as well as the systematic, environmental factors that influence our health. Why do we allow so much sugar in school lunch rooms? Why can Coca-Cola market itself as a wholesome family drink? How are government subsidies for corn (high fructose corn syrup) playing into all this? The problems are so much bigger than one individual's choice - and the solutions are too. 

As type 1 diabetics, our primary goal is typically to try to differentiate ourselves and to raise awareness for a very serious and exceptionally frustrating chronic illness. This is important work, and something I hope to continue to do every day by writing, spreading awareness and talking to my peers. But we cannot allow the conversation to stop at an attempt to remove our condition from the stigma associated with type 2 diabetes. Because we know first hand the damaging effects of these stereotypes, we need to work to expand the conversation and direct it away from the pervasive individual-blaming narrative so people with both diseases can get the care and understanding they deserve.


Why the new insulin inhaler doesn't matter.

This month marks the release of Afrezza, an inhaled insulin approved by the FDA to treat both type 1 and type 2 diabetes. Developed by pharmaceutical companies Sanofi and Mannkind, Afrezza will be the only inhalable insulin available on the U.S. market. This alternative to insulin injections is expected to generate almost $200 million in sales this year.

While at first glance an insulin inhaler sounds like an exciting innovation, Afrezza will do little to improve the lives of those living with the disease and fails to address the underlying cause. Afrezza is touted as more convenient and faster acting than injections, but its poor design makes it unrealistic for use in treating type 1 diabetes. Afrezza will likely suffer the same fate as its failed predecessor Exubera, an insulin inhaler released in 2006 by Pfizer.

Most conversations around “diabetes” are truly referring to type 2 diabetes. This makes sense – 95% of diabetics in America have type 2. Unfortunately, type 1 and type 2 diabetes have surprisingly little in common. The distinction is important – each disease has its own unique causes and treatments. Type 1 diabetes is an autoimmune disorder where the patient’s own immune system destroys their insulin-producing cells. The cause is thought to be genetically and environmentally linked but remains largely a mystery. Onset often occurs during childhood and treatment always requires multiple daily insulin injections. Type 2 diabetes is caused by insulin insensitivity. It is associated with older age, being overweight, and a diet high in carbohydrates and sugars. Type 2 can sometimes be treated with diet and exercise or with a variety of oral and injectable drugs. The development of Afrezza is yet another instance of type 1 diabetes getting lumped in with type 2 diabetes under the umbrella of “diabetes” treatment.

Anyone living with a chronic illness will tell you that convenience is king. Anything that makes an individual’s daily treatment plan simpler will be embraced wholeheartedly. Afrezza’s creators are aware of this – the “convenience” of the inhaler is one of its main selling points. But while the drug is approved for treatment of both, it does little to improve the treatment regime of a type 1 diabetic. Type 1 diabetics are always insulin dependent and typically require larger dosages. Importantly, type 1 diabetics must take both short and long lasting types of insulin, so Afrezza doesn’t actually eliminate their need for daily injections.

To most, an inhaler appears to be an improvement from an injection. The Afrezza inhaler, however, is only available in 4 and 8 unit single use cartridges. The unit is the same as that used by injectable insulins to attempt to make dosage translation easy, but instead it complicates the process. With Afrezza, a diabetic hoping to take 12 units at mealtime now has to take one 8-unit cartridge inhaler as well as a 4-unit cartridge inhaler. As dosages increase, the number of cartridges needed increases as well. For type 1 diabetics taking anywhere from 25 – 60+ total units of insulin daily, that could add up to many individual cartridges.

In fact, Type 1 diabetics relying on Afrezza would need to pack 5-10 inhaler cartridges just to leave their house for a typical day. As they use their inhaler, they generate a huge amount of waste while having to refill cartridge prescriptions often and in large quantities. Sanofi might see the need for constant refill as a potential moneymaker, but for the patient (and the environment) it poses a massive inconvenience.

The specificity of insulin dosage also suffers with the Afrezza cartridge design. If a diabetic typically takes 9 units at mealtime they would have to rely on one 8 unit cartridge. If they took 14 they would have to decide between rounding to 12 or 16 units. At a small dosage, a one-unit difference is considerable.

Research and development for Afrezza is estimated to have cost more than $1.5 billion dollars. With their patent on Lantus insulin (the world’s most prescribed) expiring this year, Sanofi’s motivation to retain influence in the diabetes treatment market is no mystery. But while the drug has been approved by the FDA for both type 1 and type 2 diabetes, its design clearly favors treatment for type 2. This makes sense from a financial perspective – 27 million more Americans suffer from type 2 than type 1. By ambiguously creating this drug for “both” types, Sanofi gains 27 million more potential customers. The creation of Afrezza is innovation for the sake of profit rather than improvement. This insulin inhaler presents complicated issues for type 1 diabetics and serves as an example of the ways that type 1 diabetes continues to be overshadowed by and assimilated into “diabetes” treatment and research.

Some exciting and meaningful type 1 diabetes research is going on. Technological improvements in continuous glucose monitors and insulin pumps are allowing devices to start working together as an “artificial pancreas”. Researchers around the world are working with many different immune response and cellular regenerative pathways towards a potential cure. There is hope for better treatment and ultimately a cure for type 1 diabetes, but innovation has progressed at a disappointingly slow rate. In 1992, my parents conceived a child they knew would be genetically predisposed to type 1 diabetes. Their doctor told them not to worry, that “this is the decade of the cure” – and indeed, it might have been if more pharmaceutical research and development money went to finding that cure rather than to unnecessary treatment options like Afrezza.