Let’s come out of the diabetes cave together

A few weeks ago two mothers of children with type 1 diabetes, started a petition asking the heads of ADA, NIH, and IDF to change the names of type 1 and type 2 diabetes.

Seeing the level of depth in the arguments in the petition, I know that a lot of time and energy went into it, so I really respect it. But personally, I do not agree with it, with all due respect to Jamie and Jeanette (who started it) and to the people that have supported it.

Our friend Amy Tenderich made some excellent points on a DiabetesMine post yesterday, which we highly recommend you read. She presents both sides of the debate in a balanced way and stated her position: “I just don’t see the value of investing our efforts, time and money (yes, renaming incurs costs) in creating descriptive, scientific names for a cause we’re trying to make easier for the public to embrace, rather than more difficult.”

I agree with Amy and I also don’t believe this effort (if successful) will foster a harmonious relationship between the type 1 and type 2 diabetes communities. If anything it would open up a deeper divide.

Increasingly, the science is showing us MORE and MORE genetic elements that connect to type 2 diabetes and its risk factors. More people with type 2 diabetes evolve from taking oral meds (plus diet and exercise) to being on insulin. As they do, their lives with diabetes and the challenges they live with become more similar to the ones faced by those with type 1 diabetes and LADA.

I don’t like to criticize an idea without offering an alternative. The alternative I propose is that we look at the successful experiences of the past 30 years, from the HIV/AIDS and Breast Cancer communities, to see what they have done that has resulted in these diseases getting 72 times and 60 times more biomedical research funding than diabetes (both types combined).

Source: The Fair Foundation

Back in the 80’s, people who were HIV/AIDS positive and negative joined together, because the stigma was affecting all of them. I recommend that everyone touched by diabetes watches the documentary “How To Survive a Plague“, so we can all get a sense of the unique challenges that this community faced and how they overcame them.

You may say: “HIV/AIDS is so different from diabetes. Diabetes is not contagious. There’s no point in comparing ourselves.” I would argue that a majority of people with diabetes live in the DIABETES CLOSET, and because of this, WE as a diabetes community, are in the DIABETES CAVE… we’re not being seeing enough, all types of diabetes are not getting enough exposure, visibility, and deserved attention.

So, instead of focusing on changing names, let’s unite, learn the lessons from the other communities that have earned the level of visibility that they have today, and turn diabetes from a cause to a movement.

I hope you will join this invitation to do justice to all of us, and see diabetes receive the level of financial support and awareness it needs and deserves. It won’t happen if we don’t join and come out of this cave together! I want to leave you with a video we did back in 2009, inviting all people touched by diabetes to learn from each other and find common ground.

— Manny Hernandez, President of Diabetes Hands Foundation (living with LADA since 2002)

Photo credit: Neils Photography

  • I love the suggestion Manny. I can get behind efforts to share the reality of all types of diabetes as part of this initiative.

  • Terry

    Do you think the breast cancer fundraising would have been hampered, even a little, if it was called Cancer Number 3?

    • manny

      I can’t speculate about that, Terry. I do know that a lot of the resulted funding and awareness for cancer and HIV/AIDS was the direct result of advocacy.

    • I have seen others making this comparison, but I disagree that it’s analogous. There are different kinds of breast cancer, but most people just call it breast cancer. Furthermore, people personally affected by breast cancer do not expect or demand that those who are not knowledgeable know or even care about the specifics. I’m sure if people are interested and ask, they’re generally happy to explain, and appreciate when people are interested in learning more, but they understand that it’s not other people’s responsibility to be familiar with the physiological specifics.

      If people want to learn more specifics about diabetes, I am always happy to explain, and regardless of how receptive they are to explanations, if they’re content to just call it diabetes, I don’t take issue with that. If they’re interested enough to want to be able to differentiate for themselves, I suspect they are much more likely to remember what I’ve told them about type 1 diabetes than a term heavy with medical terms and jargon.

  • The comparison to HIV/AIDS is especially relevant because of the stigma attached to it. Although, like you say, diabetes is not contagious, HIV?AIDS has the common characteristic of blaming the patient. Yet, those who were dedicated to the cause, fought for recognition, promoting public interest and sympathy which led to the increased funding and public awareness. That was an uphill battle, but they’ve been incredibly successful.

    I agree that setting all this name change business aside will allow the diabetes community to more readily mobilize and take action in ways that will lead to the outcomes we all want and need. Thanks for offering your point of view on this issue, Manny.

  • Well put, my man! Although I’m not sure about coming out of the cave, since I’ve been proven to be 2.6% Neanderthal, LOL! But yes, we need to advocate on so many fronts and while we do a lot of talking about it, we need to get visible and get known. We need to combat publicly the misconceptions and ignorance that leads both the public and the media to think that diabetes is not life-threatening, and doesn’t interfere with quality of life. It’s not really the medical professionals, but the politicians who determine what will be funded, and although, as the baby-boomer population ages, and the incidence of both T1 and T2 are increasing, they have not even looked at it, other than to blame obesity, which informed people know is a symptom, not a cause. We need to come together as a strong advocacy voice, and yes, we need to take lessons from those who have succeeded. Let’s have at it, folks!

    • manny

      Very true…

  • Yoo

    Well if we want to be taken seroiusly, we need to spread awareness first. And the fact that there are diferent types of diabetes does not help in educating people out there. Cancer, Aids, this are scary an shocking deseases only to hear their names. Even if some are passive or not life threatening. But this condition is been clearly missunderstood for ages. Specially when some people think it can be prevented or cured by just changing your life style. As long as the mayority believes that theres no serious implications, none is going to lift a finger to help. So, yes I think, and that is my humble opinion; that while we fight for a cure, a change on the denomination is in order.

  • Jennifer

    Hi everyone. I am new to this. I haven’t read all the posts. My mom was so upset from some of the things she was reading in the many Diabetes support groups/forums she follows that I asked her if I could say something. I am a college sophomore and my little brother who is 12 was diagnosed with Type 1 Diabetes 5 years ago. He was 7. It was on a holiday. He fainted and my parents took him to the Pediatrician ( maybe some of you can relate back to that day being diagnosed with Diabetes. He was hospitalized for a week for being Diagnosed as a Type 1 Diabetic. My family got a crash course in the hospital for an entire week on how to manage his disease. I think this is pretty standard. He has lost consciousness from severe lows 4 times in 5 years. Only one skull fracture (thankfully). Most times he can, but sometimes he cant eat at his own will like his friends do when hes with them because it would require a needle in his arm leg butt or stomach. And he gets embarrassed or just doesn’t want the shot. But he is learning the trade off is yummy food 🙂 He was so happy when he learned how to give his own shots ( 8 – 10 times a day), still. He cant always sit at the lunch table with friends because he is in the nurses office everyday telling them his carb count, getting insulin , checking for ketones calling mom and then his lunch seat is taken. So he has to find another. He cant go to sleepovers yet because my Mom is too scared he will sleep through one of his many low blood sugars she awakens him for in the middle of the night to get juice or tablets in his mouth while trying to keep him awake and alert enough just to get his number up to over 100. So she can sleep a few more hours. And no he never complains. Never. He cant feel his fingertips anymore from calluses and he is only 13. He is afraid of the insulin pump, all the tubing and looking so different from his friends. But we will get there because he is running some really high numbers lately (200 to 300) despite everything my mom and dad do. All the extra injections of insulin to correct his high and bring it down haven’t been working lately. We don’t talk about his disease much with friends or family. They don’t understand the amount of care he needs from Mom and Dad every single day of his life. Not many understand others disease or disease classifications. wish we could all fix that. We have to bring our own rolls when we go to sports games so we know the carbs, otherwise we have to guess. Have you ever tried to guess with a little kid how much insulin to give knowing 6 units may not be enough and 8 units may drop him to 30? And then of course, theres the big guns, lantus he gets that shot every night. up to 16 units now. That keeps him steady or like a basal rate. So yeah, its the little things that make up the big differences between these two diseases. I would say lots and lots of little life saving things that parents of little kids take to heart every single day. My grandpa is now a type 2 diabetic. He cried, he was afraid his life would be like his grandsons. Yes they both have “Diabetes” , but what grandpa has to endure day to day is much different than what my brother has to endure,. His Diabetes its a very, very very different disease to manage. but in the end all the same complications can occur. When my mom told me about the petition to revise the name, my brother said, I dont so much mind the name, but man it would be nice if it was a name that made sense to everyone. Thats all I needed to hear. I have since gotten over 100 college friends (some diabetics too) to sign and support this cause. Anything to help bring awareness. Its allowed me to explain the most about Diabetes than evr before and the petition has taught others at least something new already. Can I ask a favor, can you all take a step back and really look at this document for what it is. Its a name revision petition inspired by the children and adults in the diabetes community who can only benefit from having their particular Diabetes name better reflect the nature of their disease. Most important are the children in the diabetes community whose safety and livelihood depend on the knowledge and understanding of their caretakers, schools, sports field, friends, strangers etc. (no matter their type). This petition starts that process on the most basic of levels. So much more will be needed. And then there are the adults (no matter what their type) who are deserving of having a name revision as well. This petition starts that process on the most basic of levels. So much more will be needed. I cant imagine what will happen for the next step it will take to begin to get us all out of the Diabetes Cave. ( Im in it too as a sibling of a T1D and granddaughter of a T2D. Im saddened by the Diabetes Community “family” members who arent able to look toward the future generations. We have the chance to make changes for them, for all. I support this first and foremost for my brother who got the short end of the stick with a disease name and awareness. But it doesn’t always have to be that way. I support every adult and child who deserves their type of diabetes to have real name classification clarity. I think most all other forms do,The Diabetes Community could really be a force to be reckoned with in support of Diabetes …changes, awareness, growth, education, fundraising. But what a poor example many are setting for the children in this community. T1 T2 MODY LADA Gestational and others. They matter. WE ALL MATTER. In the end, we only have ourselves to blame for not moving forward in the world…together… taking baby steps…together. My little brother and I were taught to help others. But I dont know how to explain to him that his “diabetes family” doesnt want to help with his disease name clarity. How will they ever want to help/support him with the much bigger and greater issues that remain. Its ok if you just think about my thoughts. No need to respond. I really wanted to give her some support and I’ve asked her for other websites and articles that are against this petition. Im finding most of the opposition is in Diabetes sites though. I hope the name revision goes far, even if only to bring more education and awareness for all Diabetics,like it has done for me here, or my friends, it will have been a successful cause that added to many causes that are desperately waiting for Diabetes Advocates to explore.

    • I want to say, first, the amount of love and compassion shown in your comment is something, I, as a mother of a child with diabetes welcomes. It takes a person of real value to speak up, with conviction and determination and true bravery to bare your soul. I don’t have all or any answers, except, I read your comment, and decided to really think about where I stand on the issue of changing the names. Today, I call diabetes…diabetes. That being said, even people within the *diabetes family* have much to learn. Thank you for your candid comments and giving me food for thought.

      Much love to you and yours.

  • Manny –
    Well said! I agree that people should also read Amy Tenderich’s blog on the topic (for which you provided the link). Amy offers a good historical perspective on the names and why name changes are a challenge. I’ve been involved in diabetes care as a provider for nearly 35 years and have lived thru some of this history. We’ve still got plenty of people using the type I and II designations and that change took place in 1997!

    A point I wanted to make is that the type 1 community, from a public health perspective and related economic costs, is fairly small, relatively speaking. There’s power in numbers when it comes to public awareness and outcry. Keep in mind that 90-95% of people with diabetes have type 2. Today in the U.S. that’s estimated to be about 20 some odd million people with type 2. The largest percent of healthcare dollars are spent on type 2 – keep that recent ADA figure of $245 billion in 2012 (Diabetes Care, April 2013). Then don’t forget (when discussing power in numbers) the estimated (by CDC) 79 million Americans (that’s 35% of adults 20 years of age or older and 50% of adults over 65 years of age) who have prediabetes. There is a growing emphasis and concern (and dollars being spent) on this prediabetes population to try to contain this tsunami. That’s because research shows that 11% of people with prediabetes who don’t engage in a healthy lifestyle and weight loss will progress to type 2 diabetes in the following three years. Yes, these numbers are simply staggering and alone could break the bank of our health care system!

    And lastly to your point about the more we know about diabetes the more the lines between “type 1” and “type 2” are becoming grey. Very true! I believe in some years from now we could be talking about 10 different types of diabetes from the perspective of diagnosis and treatment.

    My 2 cents. Thanks again for your perspective and the work you do to bring the WHOLE diabetes community together to raise awareness and work towards positive outcomes for ALL!

  • Jennifer

    Both Type 1 and Type 2 Diseases have a huge black cloud over them as they float stationary beneath this cloud filled with everything from media misunderstanding of both to nationwide confusion about both as well as a lack of education and public awareness about both diseases. They are not the same disease in terms of management but the both lead to the same complications. Because more people have Type 2 there is a broad perception that Diabetes is the diet and exercise disease…and that exact same broad misconception has a trickle down effect to Type 1 diabetes patients..even as far down to the T1 children where misunderstanding or lack of education could lead to dangerous situations. What can the 2 classifications stuck under this cloud do about all of this? How can they work together to fix this? What changes could be advocated for the kids of both groups? What changes can be advocated for the adults of both groups? Well for one of the groups (Type1) we could start with more name clarity with a name that stands out for them for their health and safety. And for the other group (Type 2) perhaps because of the stigma attached (the trickle down one I mentioned above) maybe they could also benefit from a new name (is it needed? why not?)…could it help clean the slate and get this “much bigger fish to fry” party started for greater change, education and awareness? Yes, I believe this little baby step for both could lead us all to the first wrung on the ladder to a successful Diabetes campaign. That is , if we want it. Its the little things, we must not discount or dismiss. What harm will it do when the entire community beneath the dark cloud comes together in an effort to see the light of day together? I know many frustrated and scared Type 1s that are crying for help and barely keeping their head afloat beneath this cloud , from the medias lack of awareness and the general publics confusion and no real voice in the matter because they are the minority in population numbers (between the two groups), but there are a lot of babies in there and Type 2 young teens etc. they are the ones we have to all stop this fighting for. And I know there are many insulted and angry Type 2’s as well and rightly so, who are frustrated and who have had more than enough of their share of the medias and the publics lack of awareness and understanding and education and compassion, which they deserve too. Will a “name revision” change any of this or remove that cloud? No . But it will begin the journey waiting for us all…and then the challenging part will begin…awareness, education (or re-education) fundraising .. you ” name it “…because the sky is the limit once you start a movement together for the betterment of this entire Diabetes community. The clear choice is to unite but allow the groups to get to work for their particular classification genetic/predisposed/environmental/etc.. And take the baby steps that are required. Its true once a name revision occurs there is still the issue of stigma, and misunderstanding, and lack of education etc. But not for very long if all of us come together and want it ALL to change. Its really only as hard and divisive as WE CHOSE TO MAKE IT. Get rid of that cloud… begin by giving these 2 classifications revised names then tackle the rest of the issues together. We all can do it. We can do anything. Just like all the other Advocates did for their own personal disease campaigns. After this petition is successful, my efforts will be spent supporting PSA’s about the new name classifications and educating and making people aware that Diabetes deserves to be understood once and for all. What will your efforts be? It may be one of the many silent diseases inside and out… But we can change that from the outside and help the Researchers change it from the inside.

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  • Jennifer

    We are a family with two Type 1 kids and one non stereotypical T2D parent. The kids were diagnosed at 9 and 7 and are now 19 and 15. So I guess we have had twice the opportunity to have type 1 diabetes misunderstood, as well as a parent who doesn’t “look diabetic.”

    Certainly our all of our cases of diabetes have been misunderstood.

    I believe that each case of diabetes and each person with it has individual challenges. These stem mostly for the daily, personal, struggle to stay engaged in care. This is hard enough and it isn’t any easier to have those efforts dismissed by others.

    In our time with type 1, I have known individuals who may feel that the trickle down of stigma was unfair to their particular case. I have spoken with many, with all kinds of types of diabetes, who have felt unfairly misunderstood. By embracing the larger diabetes community they have found more people who respect their individual process of staying engaged with blood checking, injections, diet temptations and the misunderstanding of it all of that are part of the challenges each individual faces.

    I see the the process as simple. The more people we include in the diabetes community the more there are who know the reality and support our individual struggles.

    I try to help my family not see themselves as victims of diabetes, or victims of other who mistakenly try to define life with diabetes from ignorance but as individuals who will not be deterred from their life’s passions by other’s misperceptions.

    On the worst days we know there is a broad community who stand with us. That community knows the reality of the group of conditions that form diabetes mellitus. From others we can know that the annoyance we may feel at the trickle down of misconception is not the reality of our diabetes or anyone else’s. Sanding together there are more us to share that load and dispel those myths.

    On our best days, we know life with diabetes is what we make of it, not what other define for us. We pursue our passions and live by our understanding not other’s misconceptions.

    In the long run I can’t change what other choose to not know, I can live what I choose. I choose not to be a victim of others’ misconceptions.

    You specifically ask, “What will your efforts be?”

    My efforts are to see the reality of others with diabetes the way I wish all would see our family’s. To honor the struggle with out offering simplistic formulas. You speak of a silence of diabetes. I believe that as a broad inclusive community we can be more clearly address misconception and I fear that divided the community could fall into a cacophony of smaller voices competing to be heard.

    Thank you for you thoughtful and heartfelt posts. Like much of lives with diabetes there is not a single simple solution where one size fits all. I appreciate the opportunity to respectfully engage in the conversation.

    I think there is great strength in honest exchange. In cases like this I try to view differences as the strength of a variety of perspective not as right and wrong. That maybe is the most valuable idea to share.

    All the very best.

    Bennet

  • Jennifer

    Thank you Bennet,

    How lucky your children and family are to have you. Your open-mindedness and ability to embrace the challenges with much positivity and your encouragement to reach out to others and create a support system of understanding and strength is something everyone could learn from.

    I agree with you. For my part in this journey, I have been finding myself becoming interested in bringing awareness and education to others outside of the Diabetes Community. Not in a way to force others, or accuse others of being uncaring…but in a way that offers them the opportunity to learn something new, or see something new or feel something different. I dont quite know how I will do my part in this, but I think there are many of us in the Diabetes Community who do not and who never have felt the divide within the community. I became aware of it, by joining in on the DOC community. My real life experiences with others who have another type of Diabetes, is more about confusion or no understanding of the other types. But I have never met anyone with Diabetes who wasnt compassionate, caring and understanding no matter what type or types were in the room. Its been 5 years for our family since dealing with T1. The only times my brother is hurt or sad is when his peers who dont have diabetes make fun of him for having an adult chaperone on a field trip, or fot not being able to sleep over or for having do anything diabetes management related in school that the other children just dont understand. Not to mention, the normal everyday pre- teen issues children have to deal with in school and in the real world.

    I think the most important thing that matters is that we all just DO SOMETHING that we think can help ourselves, or help others, or help the general public have more understanding awareness compassion and knowledge.

    I have a feeling its not so much in the public about what others choose to know or choose not know about Diabetes. I have a feeling its about what little education and awareness has been offered or given to the general public. This is just from my own personal experience so far in the world of Diabetes.

    I think if everybody just does something positive that moves them to help in anyway, as a community things can only improve. But agree with you everyone needs to become more openminded about others and find ways to be positive not only about their situation but about themselves and others. and support each other, especially when others are advocating for their own form of Diabetes. Thanks for you time and consideration Bennet, and for sharing your thoughts.

  • Elna Narula

    Thank you Manny – and Amy for your well-balanced responses and posts. As has already been mentioned above by Hope, there are many similarities between all kinds of diabetes (and there are more than two – GDM is another, and many times insulin-requiring as well)while there are distinct differences too. (And yes, there is LADA, and MODY, and research has shown us that genetic differences illustrate just how personalized diabetes is for each person, which may also account for some of the difficulty in achieving a cure.
    But if we really want a cure and a better quality of life for all of those living with this disease, especially those who are insulin-dependent, then it’s important to remember that there is strength in numbers.
    Let us concentrate on the ties that bind us together rather than the differences that separate us…..

  • Jennifer

    Great points Elma,

    And let us not forget there is always room to do both, for not only coming together is paramount in the Diabetes Community, but so is allowing and accepting that each different form deserves the opportunity to support their own disease. Nothing wrong with choosing to support Diabetes as well as support your own form of Diabetes in the many ways of awareness education and fund raising. We are all in this together, while uniquely experiencing different ways of managing, treating and living with each different form. They are not all the same, but they all deserve the same respect from us and others.

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