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Posts from the ‘Guest Diabetes Blogger’ Category

#Insulin4All: A Chat with Elizabeth Rowley.

Last week at the International Diabetes Federation’s World Congress in Vancouver, I had a chance to briefly reconnect with Elizabeth Rowley from T1D International.  We talked about the #Insulin4All campaign and the work she and her team are doing to help provide access to people with diabetes around the globe, and how our online community can work together to improve lives across the globe.  Today, she’s sharing some of her thoughts on how we can change the world for PWD.

Thanks for taking the time to talk today, Elizabeth!  I see that the #Insulin4All was popular on World Diabetes Day again this year.  Can you tell me more about that campaign? 

The #insulin4all campaign was started last year by a network of organisations called the Access Alliance that are passionate about access to insulin, diabetes supplies, care, and education for all people with type 1 diabetes.

World Diabetes Day (WDD) started in 1991 in order to “draw attention to issues of paramount importance to the diabetes world” and has since become a huge day in the diabetes community for raising awareness about diabetes. The Access Alliance felt that while WDD is a wonderful thing, the true spirit of the day had been somewhat lost because people around the entire globe with diabetes were often forgotten. We wanted to do something more. So many people living with type 1 diabetes struggle to survive because they cannot afford or access their life-saving insulin, blood glucose strips, or basic healthcare. Others are caught in conflict where there is little humanitarian assistance for people with diabetes.

The aim of the campaign is to unite as a diabetes and global community to show governments, companies, and individuals that we recognize the problems mentioned above. It’s important that we stand together to work towards tangible solutions. The campaign gets bigger each year around World Diabetes Day, but we want everyone to support #insulin4all every day of the year.

How can people participate?

The easiest way to support the campaign is by using the hashtag on social media and spreading the world about the issues. There is a lot of content on the Tumblr page and on the T1International website that you can share to promote and push for #insulin4all. You can also still submit an #insulin4all image on the Tumblr page. All you need to do is take a picture of yourself holding up a piece of paper with #insulin4all written on it, submit it to the campaign page, and share it widely.

How does this campaign bring the mission of insulin for all to a higher level and what is your goal?

The diabetes community is a hugely powerful force and we have seen it unite to push for change from topics such as general diabetes awareness to access to CGMs. Many people with diabetes don’t realise that millions are dying premature death because they can’t access the basics that everyone living with the condition needs to survive. We want people to know that this is happening and we want to unite to change the situation. As with any change, the first step is to understand the problems to find the best solutions. The next step is building a force of advocates to ensure that change happens. That is what this campaign has already begun doing and will continue to do until everyone can live a full life with diabetes.

What makes this campaign different from other insulin access efforts, like the 100 Campaign?

The #insulin4all campaign is somewhat unique in that last year, for example, it had participation from people in over 40 countries around the world. It is very important to share the voices of others, especially those who are facing lack of access to insulin and supplies, and we are so glad to be able to do that through this campaign.

We support the 100 Campaign and love its clear and powerful idea of 100% access to insulin by 2022. Despite the hashtag, #insulin4all’s focus is not only on insulin, but on all of the ‘pieces of the diabetes puzzle’. Even if you have insulin, for example, if you don’t have a syringe to inject it with, or a means to know your blood sugar levels, you’re still in grave danger. We feel strongly that all of these things need to be taken into account when building solutions.

Finally, while we know the #insulin4all campaign is a powerful awareness and advocacy tool, we also know that it alone will not create sustainable change. The annual campaign is part of a wider organisation and movement that is working towards that change. T1International and the other Access Alliance members are taking on a truly collective and collaborative approach because we recognize that we are stronger when we work together. The members of the alliance all work with and are part of diabetes communities around the globe which helps us ensure that we fully understand the many complex issues faced by people with diabetes. *If you want to join the Access Alliance, get in touch with elizabeth@t1international.com*

Do you think the diabetes online community has global reach and can make a truly global difference?

Part of the issue we are bringing to light is that the diabetes online community is probably not global enough. This was certainly one of the motivations we had in setting up the campaign and the Access Alliance in the first place. We have been heartened to find that, as people learn about these issues, many are shocked and stunned – and they want to do something about it. We are confident that #insulin4all will grow the number of people that know about the issues and will therefore grow our power in numbers to speak out against the injustices.

Yes, change is possible, but there are no easy answers or quick fixes when it comes to ensuring everyone around the world can obtain insulin, syringes, test trips, glucometers, and the diabetes education needed to keep them alive. That makes it even more important that we determinedly search for those answers and find appropriate solutions. It’s an ongoing process but it’s a vital one if we are to see the kind of change that is needed for our brothers and sisters with diabetes around the globe.

Is there anything else you’d like to add?

“Life with diabetes is complicated. Access to vital insulin, diabetes supplies and medical care should not be.” If you agree, support #insulin4all today or get in touch with elizabeth@t1international.com if you want to get further involved.

Guest Post: E-Patient Dave Takes on T2D.

Dave deBronkart and I met several years ago through patient advocacy and online connection points, and I’ve followed his health story as he has simultaneously followed mine.  Dave comes from the perspective of a cancer survivor who almost died and has turned his “free replay in life” into a crusade to open healthcare’s minds to the idea of partnering with patients.  So when he messaged me to tell me that his lab results for A1C came back a little elevated, I watched our health stories smash up for the first time.  Nothing like the experience of trying to change an A1C to bring people together.

Today, Dave is guest posting about his experiences toeing line of type 2 diabetes, and his take on patient guidance in the diabetes space.  (And for more from Dave, you can follow his very lively Twitter account or blogOr just Google him and see all the fun that pops up.)

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Dealing with an “increased risk” of T2D
by ePatient Dave

A1c Nov 2014

A year ago this week I got some blood work done and it came back with this great big numeric fart in my face: the number 5.8, followed by “Increased risk for diabetes.”

WHAT?? I. Am. Not. A. Diabetes. Person. Those people are Kerri, or Amy, or Dana, or Manny, or Scott, or Eric, or Dominick. It’s all those people I like and respect and enjoy knowing, but it’s not me. I mean, they’re not me. I’m not them – they’re a special class. What?  I mean, I’m a kidney cancer guy, not an insulin problem guy. I don’t even know what that is, really. And I certainly don’t know how to do it.

In hindsight it feels like it was easier when I was diagnosed in 2007 as almost dead with kidney cancer. And that episode was over in less than a year. Me with a permanent thing? (I know I’m sounding like an uninformed idiot here. That’s what it’s like when you’re in the denial phase.)

What to do? Back then I got it in gear, doing what I could despite bad odds, and I was one of the lucky ones, aided by a great online patient community, which my oncologist said (in the BMJ!) he thinks helped save my life.

So, what to do this time? My PCP told me about a diabetes prevention program run by the YMCA that reduces by 58% the odds of ever developing T2D, if you lose x% of your weight and get 150 minutes of activity every week. I’d have to pay for it – a few hundred bucks – but it seems worth it.

Withings weight curve 2015-08-30And boy has it been effective for me – check the graph from our wifi bathroom scale. (My results were not typical!) I lost 30 pounds in four months (January to May), dropped a few more to 197 in August… I’m back up over 200 now but I’m also a gotta be active guy … first time in my life I’ve felt I have to get outside and move around.

It’s really a lifestyle program – they teach what I’d call food awareness, but it’s really not a diet. They have you count fat grams, with a book or an app or whatever, but that’s no diet. Then later they get into some more detail. But it’s not complicated. And they have you get active – no particular exercise regimen, no in-your-face smiling Sweat Coach.

You know what, though? Effing stupid insurance won’t pay for it.  If the insurance industry wanted to reduce medical spending they’d obviously spend a few hundred on prevention, so I conclude that they’re either stupid or corrupt. (I know I don’t usually talk this way but I honestly can’t figure out any either explanation. Can you?)

Plus, the effing stupid program isn’t available to people who aren’t yet officially pre-diabetes! It’s a good program, and my wife wants to do it too, but they won’t let her in because she’s not almost in trouble! What the !@#@! are these people thinking, not even letting someone buy their way into this course?

And you know what else?  When I measured my A1c again in September, it was up … it was worse. 5.9.

So now I’m in the middle of trying to educate myself about that.  Do you have any idea how hard it is to find out what to do about that??

Well, I imagine you do know. I’m here to say, for sure, that although T2D is different from T1D, it’s clear to me that the system (whatever that is) sure doesn’t make it easy for us to do the right thing.

I do know this: digital tools made (and continue to make) my own work on this a lot more practical … I mean, without important information and without feedback tools, how is anyone supposed to do a good job? As I always say in my speeches – “We perform better when we’re informed better.”

Here’s to a radical acceleration of the tools we need – driven by what patients say they – we – need!

And I’m not even T2D yet – I’m just frickin annoyed at how I can’t even get clear instructions on what I should be doing about it! I believe health goals should be patient-driven, and the C word (“compliance”) should be thought of as achievement. So why can’t I get good guidance on that??

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Health goals should be patient goals, and there needs to be clear guidance on how to achieve them.  Thanks for lending your voice here today, Dave. 

Diabetes Research: My Evolution Toward a Patient Revolution.

I like Dr. Victor MontoriHe’s a Mayo Clinic diabetes doctor and researcher who is working for a patient revolution – versus healthcare corruption – and for treatments that fit patients properly.  He and I are part of a PCORI team looking at user-centered design and the development of patient decision aids, and I had the chance to meet with Dr. Montori in person at the PCORI meeting in DC last month. 

What I like most about Dr. Montori is that he doesn’t say what people want to hear, but he says what he feels needs to be heard.  I respect the lack of bowing to the status quo, and the desire to improve the system.  Today, for Diabetes Month [insert blue circle confetti here], Dr. Montori has graciously offered to share his perspectives on why the patient revolution is important, and how we are all a part of it.

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Diabetes research: my evolution toward a patient revolution

by Victor M. Montori, MD, KER Unit, Mayo Clinic

I can only speak of the picture I have had a chance to see directly since I started my career as an endocrinologist in 2000. I am referring to my perspective about diabetes. I worry my perspective is narrow and skewed, but it is what it is. So here it is, offered humbly in case it helps.

My training as endocrinologist focused on conducting research with my mentor, Dr. Steven A. Smith, research he had oriented toward discovering better ways of caring for diabetes in the community. He taught me about the different ways in which clinicians and communities could support people with diabetes, and how, in health care, specialists and generalists needed to work together. He saw the role of endocrinologists more as architects, designers of systems of care, rather than as artisans, designers of care programs for individual patients. He made me aware of the challenges poorly designed health care adds to the already complicated lives of patients. And he made me aware of the complicated lives of patients and how terrible clinicians would improve their standing by either directly firing patients or by chastising the noncompliant ones who would then leave the practice. These clinicians would then boast that they did not have noncompliant patients and had no trouble keeping them all under 7%. This to me exemplifies the corruption of healthcare.

I think there is a direct link between those early lessons and those I have learned as a researcher and clinician focused on diabetes in the last decade. My band of sisters and brothers, the Knowledge and Evaluation Research Unit or KER UNIT, works closely with a patient advisory group comprised of patients with diabetes who have met monthly since November 2004 to support researchers like us in our work. Firmly keeping us patient-centered has been their key contribution. The KER UNIT was formed on the basis on three principles: generosity, integrity, and patient-centeredness. These are lived principles and we constantly refer back to them to make tough decisions. They have served us well. As a result, for example, we take no funding from for profit corporations, funding that could stand as an alternative explanation – to scientific judgment – for how we have summarized evidence or presented it to patients and clinicians.

We focused our first efforts as a unit to understand how we know what we know, as this translated into what we told patients to do. In doing so we found that much of our dogma is based on unreliable evidence, that much of that evidence fails to tell us if patients will be better off with our interventions, and that it focuses on a mythical molecule, the HbA1c. HbA1c is the outcome of choice for all clinical trials, the metric of quality for most quality improvement projects, and the only grade on the gradebook on the desk of the endocrinologist-as-principal. And when we asked patients, HbA1c was as important as death as an outcome for diabetes research! The manipulation of patients and clinicians was complete.

With my colleagues at the KER UNIT, we then turned our attention to shared decision making and developed the first tool to help patients and clinicians decide together if the patient should take a statin to prevent heart attacks or which diabetes drug to choose. Those tools, found on trials to be effective, have remained freely available and are used at least 10,000 times per month, around the world. By bringing transparency to the consultation, patients and clinicians could find what is best for each patient, based on what is possible and effective and on what matters to patients.

In 2009, we started to develop an approach that seeks to advance the goals of patients while minimizing the healthcare footprint on their lives. This work involves recognizing the work of being patient, understanding the burden of treatment, and learning how healthcare could be delivered in a way that is careful with what it demands and kind with the precious capacity patients have to do this work and to do the more meaningful work of addressing life’s urgent demands while pursuing their hopes and dreams. We call this minimally disruptive medicine, and we believe it is going to transform medical care, particularly for patients living with chronic conditions like diabetes.

This is particularly important for patients with chronic conditions like type 1 diabetes. Patients with diabetes study, work, and grow families, develop careers and volunteer, plan schemes and pursue challenges. Diabetes sometimes gets in the way, but care of of diabetes – organized often to satisfy economic and business urgencies, almost always gets in the way. Think of the difficulties of getting stuff paid, approved, coordinated, or delivered, of getting medications refilled, getting records shared with other clinicians and with patients. Paper work, time work, worry work. Technologies are helping reduce the healthcare footprint of diabetes in people’s lives, just as an increase awareness of the human cost of hypoglycemia is helping nuance the care of patients with diabetes in hospitals and clinics. Hopefully the endocrinologist-as-principal judging the patient only on the basis of HbA1c levels is an endangered species we will not save. Only competent and compassionate medical partners and clinics, able to be careful and kind, need apply. Our team is quantifying the work of being a patient with diabetes and bringing to consultations tools to uncover why patients may struggle to achieve their own goals.

Our latest pursuit recognizes the limitations of only innovating within healthcare. We think we need to fundamentally change medicine and re-orient healthcare toward the care of patients. To achieve that we need to change the way health care is organized, paid for, delivered, and rewarded. Clinicians, my colleagues, recognize the need to recover medical care of the patient from the industrialization of health care, but they declare their impotence. Thus, I strongly believe it is time for a patient revolution.

Perhaps the next big civil rights movement, the patient revolution will claim that people cannot be left out, priced out, of the care they need. They will claim that people cannot be exposed to less healthcare than they need, or more healthcare than they want, and that health care must fit their context. They will claim that healthcare cannot start and stop at the hospital door, but rather should be complemented by policies that improve the health of the community and reduce the impact of factors that promote chronic illness such as pollution, violence, poverty, inequality, inequity, loneliness, homelessness, and poor nutrition. Through individual advocacy (not for a single disease or for a loved one alone) and collective action (not the walk, the run, the ride, or the bucket) we can bring change to make healthcare more about care for and about the patient. I invite you to mobilize your friends and family and to join the patient revolution.

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Thanks, Dr. Montori, for sharing your thoughts.  As patients and caregivers touched by diabetes, how can we be part of the revolution?  Patient voices and perspectives are not new.  We are the revolution.

Guest Post: Can Neither Confirm Nor Deny.

There’s power to the “me, too!” moments for sure, but there’s vulnerability involved in raising your hand first to say, “Me.”  Today, I have a guest post from a writer who wished to stay anonymous but who is looking for others who may have experienced something similar to what they went through.  If you’ve ever passed out or had a seizure, or have experienced a pocket of time where you know something diabetes-related happened but you can’t quite explain it, please leave a comment for this writer.  They need community now, more than ever.

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The day was just like any other. Except it was a Friday before vacation where the afternoon is extra stressful to complete everything before heading out and not looking back for one week. That morning the Dexcom sensor was incredibly itchy, so I removed it.

When the work day was done I left with a bunch of errands to run before I could really enjoy myself. At the first stop I couldn’t find my wallet in my bag even though I knew it was in there. I was disoriented and didn’t know why. I kept apologizing.  I was so embarrassed about my lack of functionality that I returned to my car with nothing completed for my errand.

An hour later I “woke up” confused as to where my phone could possibly be. I found it in the trunk of my car. There is no memory of what happened after I sat down in my car (parked). However, as soon as I woke up I knew I had passed out. Presumably from a low blood sugar based on my actions during my errand. Based on the location of my phone, I believe it is possible I seized as well. I have no way to confirm or deny this assumption.

I do not know if this will ever happen again. I do not know how I came-to on my own. I do not know why I am lucky enough to have survived this. I do know that I reached out to my support system. I reached out to the people who would take it as is and not freak out. I was doing enough of that on my own. I do know that it is a hard event to move on from. I also know I’m not willing to let the whole world know yet.

But! Has anyone had this happen to them? Or something similar? How did you continue to live your whole life with diabetes without this always being in the back of your mind? Or front and center? Did you over treat? Or start treating almost lows, which weren’t lows but actually acceptable blood sugars? How do you keep your focus on your sugars and not raise your perception of what’s an “acceptable blood sugar”?

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I’m glad you’re okay, Anonymous.

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

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Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

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:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

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