11 November 2011

We Do want Diabetes Research, Treatment Innovations, & Care to Move Forward, Right? Part 2

I wanted to blog my thoughts on this in two parts. The first encompasses my reactions as they relate to picking our battles, and not causing unintentional negative outcomes - you know, the gift horse scares you senseless, so you kick it, not realizing it comes bearing gifts. Part 2, however, is about something much deeper, much closer to our hearts, and to the dark ebb and flow of fears we don't want to see, touch, or acknowledge.

Let me start by saying that I understand and relate to people reading the 1 in 20 statistic and questioning its validity, even questioning how their child or loved one with diabetes might respond if she / he sees the JDRF ad. Extending it to the notion that no one will have our kids over for play dates, sleepovers, or hire them for jobs as I've seen suggested in diabetes forums feels like such a reach, almost as if we've taken our initial reaction to the ad and designed a story around the ad that justifies our feelings of anger. That's not to say the anger isn't legitimate. But I do wonder if it's healthy, even helpful, to check out where this intense reaction comes from (the one perpetuated beyond an initial reaction.) At least, I needed to for myself, because when I first saw the ad, I felt numb, tearful, and PO'd in relatively short order.

First, I needed to check out my internal barometer. Once voiced, I had similar initial fears about the impact the ad might have, so I shared the ad with people. Truth is, we already have problems with being invited for 'playdates' (though now that my daughter's in middle school she says I'm not allowed to call them that anymore), sleepovers, and I lost my job. So, I had to stop and ask myself, does this ad really make any of that worse? I don't know, but honestly, I don't think it does.

So, I shared the ad, and honestly, most people didn't bat an eye. About half apologized for the way they've acted or treated us since my daughter's diagnosis in February. It was like a wake up call for them. The one friend who's home she actually still spends the night at? They're completely un-phased as we have plans set up. My daughter and I work out her needs via cell phone, and if necessary, I run over to the house (FYI, it's happened once in 9 months...) 

Second, and more concerning to me, I needed to look at why I was so ready to be mad at JDRF before looking into the facts, and really considering all the factors. For me, it boils down to needing something to be angry at rather than facing the idea that my kid might fit into a statistic like that. Seeing that ad, feeling the fear associated with numbers like 1 in 20 die, sets off a maelstrom of feelings, primarily anger at this disease, at the sleep deprivation, at the seemingly selfish desire to get more than 2.5 hours of sleep at a time, the things our kids have to go through and face because people don't understand type 1, or because they're afraid to be confronted with it. Fear that she could go too low one night, that I won't wake up to my alarms (BTDT!) and the worst will happen. Sadness and hurt that this is her life, there's no turning it off. It took nanoseconds and one line of text to bring all that up.

The problem is, that maelstrom has nowhere to go, it's a mess of hurt, fear, and yes anger that I can't do a damn thing with - so I subconsciously look for a target to aim it at. How about the messenger of the stat? Why not? They used it to get a reaction, it might not (we don't want it to) be accurate. Even though the supporting references do support it (depending on how you analyze the data), it's clear they sensationalized it for lobbying purposes. So, why not?

Truly, though, all that anger at JDRF, no matter how justified is a mirage to deflect against my own anger and fears for my child. I can let myself ignore them, and they will carry me off into believing this ad harmed my child directly by robbing her of play dates, changing how people perceive of and treat her, and end up in a self fulfilling prophecy. Or, I can acknowledge all the hurt, fear, and anger this ad generates. I can send a message to JDRF letting them know how the ad affected us, and then let it go with a promise to do something about the fear and anger I want to stay hidden. 

I can participate in online diabetes communities and share it with people who understand. I can try to channel my hurt, fear and anger into helping JDRF or whoever find a better tomorrow for my child. Or, I can accept that for right now, I have nothing extra to give - not even to fuel continued anger over an ad the rest of the world likely already forgot about.

They may not come through, but there's raw emotion imbued in the words and ideas in this post. I took the time to share them because I sense they're important, not just to me, but to many people fighting this fight. Clearly, the ad touched something deeply inside many of us within the diabetic community. It touched upon a fear we don't want, and our kids shouldn't have, to live with. Part 2 is about taking a minute to honor that side of it...because when we do, the fear loses its control over us. Sleep well, at least for the next few hours.

We Do want Diabetes Research, Treatment Innovations, & Care to Move Forward, Right? Part I

I received an email from the ADA the day after JDRF ran it's ad with the alarming statistic that rang round the web: 1 in 20 type I diabetics ... die from hypoglycemia. The ADA email and enclosed ad were entitled Stand Up to Fight Diabetes and carried the following text:

The first step in calling out a proven killer is a simple show of hands.

During American Diabetes Month, help stop a disease that's more likely to take your life than breast cancer and AIDS combined.

Visit us on Facebook this November and Join the Millions who are standing up and fighting back against diabetes.

Together we can create greater awareness and support for a disease that strikes every 17 seconds. Go to Facebook today to take the pledge to help Stop Diabetes. Then share with your friends, family and loved ones.
The first line has become their tag line for Diabetes Awareness Month, and appears in a picture with a woman holding up her hand in the universal sign for stop. There is a small drop of blood visible on her index finger. That line appears in red or bolded black text to one side of her hand (depending on where you read this), and on the other it says is a simple show of hands in white. (The woman's face is also blurred out.) The second line of text appears below that picture.

I don't see these tactics as being much different from the JDRF article discussed in many type I diabetic communities, and it created quite an outcry, particularly from parents of type 1 diabetics. The awareness month serves political, fundraising, and lobbying goals, and we're going to see a lot of sensationalist text like this. Given the state of our economy, and the dismal availability of funding (private, grant, government, etc.) non profits are going into pull out all the stops mode. There are other issues with regulatory agencies, but let's pretend we don't know about those (since most people truly don't...)

We don't have to like the text or the tactics, and we can protest, but the reality is this is what it takes to maybe garner funding when the stakes are high - and right now, they're really high. The percentage of non profit funding being sought through grants (particularly research), foundations, government etc has more than quadrupled, the pool of funding seekers has grown as well, and all for less money. While we have the right to dislike and protest these tactics, these organizations still have to fight to stay afloat, and may well wonder whether we understand just how hard it is to fund diabetes research, or how much we want innovation to occur in our children's lifetimes. 

I'm not saying I agree with or support the tactics, but I can see both sides (in part because I've done a fair amount of grant writing.) I just went to a workshop on the changing face of grant writing a couple of weeks ago, and the push is for non profit organizations to move their focus to friend raising rather than fund raising because the money just isn't there. That's not really a viable option for medical research, and when it comes to research funding, it's sort of like triage - you have to convince the players who matter that the condition and research you want funded is of more critical importance than all others. 

Sometimes, I think you have to pick your battles on this stuff. I didn't like the ADA text above, but I want the artificial pancreas to move forward, so I will instead focus my energy on educating people closer to me who might say, "Hey I saw that ADA ad. I didn't realize..."

08 November 2011

Diabetes Awareness Month

November is Diabetes Awareness month. In fact, November 1, 2011 was the first ever day devoted to Type 1 Diabetics, and November 14th is World Diabetes Day. A friend asked me why we need two different days, and my daughter (the type 1 diabetic) answered, "We don't, we need a whole month. There are lots of different kinds of diabetes. It's just that everyone thinks it's only type 2, and they don't even understand that one, really."

That's my kid, a cute, young, but fast maturing little girl who carries a burden few adults would know how to manage, and does so brilliantly. She's smart, she's fun, her laugh is intoxicating, and her outlook on life is uber positive and bouncy in a way that only Tigger and she could pull off. Most of the time.

Then there are days like today. Days when she's tired after being woken up every three hours to treat a near low with milk or juice followed by a snack. Sure, most kids would dance the Light Fantastic at getting a middle of the night snack, but when it's meant to save your life, when your tongue is stuck to the roof of your mouth with the worst case of dry mouth imaginable, and you have to eat this snack  right now whether you want to or not - that just simply begins to suck. Especially when your mom stops making sense and exhibits only one mood, the irritability of sleep deprivation.

We're both beyond tired, and even so, most days we're grateful for all that we have, for the fact that her disease is manageable.On the mornings that follow extreme trials of sleep deprivation, it can be hard to dip into the well of gratitude. Still, we persevere, and I for one am grateful. Grateful that cell phones offer multiple alarms, thankful that my son knows how to download the most obnoxious music designed to wake the dead, and mostly, filled with a deep sense of blissfilled thanks to our guardian angels (who I swear pushed me off the bed) that she woke from another night of uncertainty.

Since November 1st, Type 1 Diabetes Day, the diabetes community has continually struggled with and debated the merits of an ad run by the JDRF in the Washington Post and the New York Times. Take a look for yourself:

I realize the text of the ad came out a bit blurry and difficult to read, but I'm sure you noticed the startling statistic. 1IN 20 TYPE 1 DIABETICS DIE FROM LOW BLOOD SUGAR.

That's a startling, appalling, alarming statistic, and it's caused quite an outcry in diabetes circles. The debate centers around the the statistic, and the perception of statistical manipulation or fear mongering versus an honest and necessary attempt to help people truly understand that Type 1 Diabetes is a serious, often devastating disease, with debilitating effects on one's health over time.

I've spent days reading and listening to parents of children with type 1 diabetes decry the morally reprehensible lobbying tactics utilized in this ad. I've researched, sifted through study after study, looked at current data, and the facts remain - muddy, obscured. Yes, treatment options have come a long, long way baby. Those with type 1 who have access to these treatment options likely face better outcomes than those patients in the studies used by JDRF to arrive at this startling statistic.

At the same time, the number of children diagnosed with type 1 diabetes increased exponentially over the last 5 years, and continues to do so. Researchers don't understand why, but this will put a strain on the availability of treatment resources. Those of us with children who have type 1 diabetes need to be aware that the prevalence of this autoimmune disease is fast outpacing both the resources we currently have, and the rate of research for better treatment options and a cure, particularly in our country where research seems all but stagnant.

The truth is, it isn't about the statistic at all. It's about the fact that children and adults with type 1 diabetes suffer hypoglycemic events every single day, and those cause destruction to the neurological system. It's about how incredibly hard type 1 diabetics, and their families, work to negate that, and to ensure that the type 1 diabetic leads as normal and healthy a life as those without this disease. It's about the countless hours of lost sleep, the constant state of awareness and emergency preparedness that type 1 diabetics live with every hour of every day. It's about what could happen, and does happen, should we decide we want and need a break from this - because the truth is, diabetes takes no breaks. It doesn't wait for lunch time, honor holidays, recognize you have a test or a presentation, or care that your school health para (or even your dad) stinks at math. Every minute of every day, and night, counts - sometimes it makes the difference.

The fact is, in other countries, corporations like U.S. based Medtronic offer technological tools designed to reduce the burden on, and increase the safety of, type 1 diabetics. Tools that are not available in the U.S., and that the FDA will not yet consider until years of further testing are concluded. You might think this is due to safety concerns, but the truth is it's not. If people don't realize that Type 1 diabetes is really all that serious, that people die from it and suffer debilitating health concerns as a result of years of insulin dependence, then no one is going to lobby and push for research funding in this area. Sure, the statistic, the ad, they feel alarmist, and they're meant to. Our country is currently light years behind the European Union in research and innovation in the area of diabetes - a disease that already accounts for a high percentage of all health care costs in our nation.

Think about our night that I briefly shared - that was mild. Multiply that times 365 nights a year, and take that times 30 million - the number of people in the U.S. alone that have type 1 diabetes. Chances are, you know someone who isn't going to sleep well tonight, who is afraid they or their child may not wake up tomorrow. Is it really so wrong that the JDRF is pushing the FDA to release guidelines that will allow research in our country to move forward? I didn't think so.