Tag Archives: American Diabetes Association

Got a phone? You’re an advocate.

You know, 2017 was quite a year in health care in the USA. So, what’s happening in health care in 2018?

Pretty much the same things.

Any successes that were achieved in terms of awareness on drug pricing, or access to care, or anything else have been met with continued explanations and excuses, but not any real progress. In all fairness, the rollout of Eli Lilly’s Basaglar and Novo Nordisk’s Fiasp have been positive developments.

But they won’t mean much if few can afford those, or if insurance companies continue to take away choice from patients by only allowing one brand of drug to be on a plan’s formulary, while forcing patients on the non-formulary brands to use something that may not work best for them (a practice known as non-medical switching).

In 2017, successes that came from helping to defeat the forces trying to rip apart PPACA (Obamacare) were hurt by repeal of the individual mandate, the provision in PPACA that reduced overall costs by requiring everyone to have coverage. That happened in the “tax reform” package passed and signed into law last month.

There are other questions, of course… what’s going to happen with the Special Diabetes Program, used to help fund research? What about CHIP, the Children’s Health Insurance Program, which covers many disadvantaged kids living with diabetes? It appears that the furor over partisan politics has left many previously no-brainer health care initiatives in limbo.

Buckle up, kids. It’s going to be another crazy year of fighting to hold on to things that we’ve already fought hard for many times. As a result of congress and the president blowing a trillion and a half dollar hole in the federal budget so they can help insurers and drug makers (among others who were already making more money than ever before), every single piece of spending is in danger of being cut to help make up the voluntary deficit they created.

Does this make you mad? It makes me mad. What do we do now?

First of all, we download the DPAC app. Diabetes Patient Advocacy Coalition will keep you updated on hot-button topics, and most of all, give you easy, quick ways to add your voice to the conversation. And wow, do we need your voice added to the conversation.

In addition, the American Diabetes Association and JDRF are doing a super job of advocating on our behalf, and they could use your support. They are also employing easy, quick tactics to help people living with and affected by diabetes join the advocacy effort from wherever they live. Get on their advocacy mailing lists and start communicating.

And don’t forget, you can always use your phone to actually speak with a person too. Contact your congressperson, senator, or even your president and let them know the score. Let them know you won’t be going away.

We don’t have to go all the way to Washington to share our personal stories. We don’t have to schedule time with a member of congress, hoping to get a chance to speak. We can speak now, loudly, and in unison, and easier than ever before.

If you have a phone, you are an advocate.

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Scholarships! Get your red hot scholarships!

This past Wednesday’s DSMA Twitter Chat was all about travel and diabetes. Actually, it turned out that travel and diabetes was part of it, and travel for diabetes was another part of it.

Anyway, one of our questions was:

Are you aware that there are groups who offer scholarships to attend diabetes events?

I was shocked to find out that many were not aware of this fact. That doesn’t mean there’s something wrong with those people. Rather, it means we, as a community, need to do a better job of letting people know about said scholarships and we need to do a better job of supporting those organizations who do award scholarships.

Every time a semi-big diabetes event occurs, or someone writes about their child with diabetes going away to a camp or something, a lot of hand-wringing goes on about who is there, and why, or how, they got there in the first place. Well, we get there a number of ways (and I realize I’m using “we” with a very big umbrella here). Sometimes these things are geographically close to us. Or we actually, you know, save our money so we can afford to get there. Some events are invitation-only and travel is paid for those who attend. And yes, sometimes, we receive scholarships.

I can’t do anything about those first three things. But as far as the scholarships are concerned: I can let you know about them, and then it’s up to you to either apply for them or not. And if you have a desire to go, and you can’t quite fit it into your budget, why wouldn’t you apply?

This is my attempt to give you a rundown of the scholarship opportunities I know about right now. This is not a comprehensive list, but it’s a start, and if you know of additional resources, please leave a comment below or send me an e-mail and I’ll add them. Some of these are actual scholarships to college for kids with diabetes, and some are scholarships that will help you or your child attend a diabetes event that you might not otherwise be able to travel to.

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First, let me tell you about the amazing work of Diabetes Scholars. Since 2004, the non-profit Diabetes Scholars Foundation has provided scholarships for over 3,000 families to attend the big diabetes meetup of the year, Children With Diabetes Friends for Life conference in Orlando. Many of these families would not be able to go without the assistance of Diabetes Scholars. Diabetes Scholars also provides college scholarships to high school seniors looking to further their education. Get all the details on scholarship opportunities and the application process at
diabetesscholars.org.
 
 
Speaking of college, College Diabetes Network has a terrific list of college scholarships available throughout the USA. These are scholarships that are available from a number of sources, but this page contains a brief description of each scholarship opportunity and a link to its source:
https://collegediabetesnetwork.org/content/scholarships
 
 
Diabetes Hands Foundation and Diabetes Advocates: These two non-profit orgs (DA is a group of, well, diabetes advocates under the DHF umbrella) provide scholarships to a variety of D-conferences throughout the year, including the annual American Association of Diabetes Educators conference, American Diabetes Association’s Scientific Sessions, and Friends for Life. In addition, they created one day scholarships to attend MasterLab, a one-day advocacy workshop at FFL last year, and my guess is they will do the same this year (though I have no inside knowledge). To look into scholarship opportunities, start at
diabeteshandsfoundation.org
.
Disclosure: I received a scholarship from Diabetes Advocates to attend MasterLab last year. More about that in a minute.
 
 
The American Diabetes Association, in addition to support received from corporate sponsors (thank you Eli Lilly), helps to provide “camperships” for kids to attend diabetes camps across America. The process is pretty simple, and it’s spelled out at
http://www.diabetes.org/in-my-community/diabetes-camp/financial-assistance.html
 
 
The always-inspiring Team Type 1 Foundation works to provide help, hope, and awesome examples of athletes with Type 1 diabetes making a positive influence on the world. They also provide college scholarships to Type 1 athletes competing at NCAA and NAIA institutions. Their scholarship page has all the information, including requirements:
http://teamtype1.org/gasp/

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That’s the list so far. I know there are many, many more scholarship opportunities out there, but I just haven’t found them yet. Again, if you know about something not mentioned here, leave me a comment or an e-mail, and I’ll add it to the list.

One other thing, and this is personal, so feel free to ignore the rest of this post: As I mentioned above, I received a scholarship to attend MasterLab last year. A couple of months later (or maybe I just noticed it a couple of months later), I read a few things about a person or persons who were unhappy, and felt like the same people are always getting to go to important diabetes events. Well, I felt horrible about that. This was the only thing I’ve ever been given (other than an invitation) to attend a diabetes event. But since then, I’ve wondered if, by accepting a scholarship to attend, I was denying someone else’s opportunity.

So this year, I’m not applying for any scholarships. If I can afford to go to something, I will. If I cannot, I won’t, and I won’t worry about it. This is my decision, and my decision alone, and I doubt it will have any real impact at all. After all, I’m not exactly giving up something I’ve already been granted. And I can’t say that I’ll always feel this way. Each year carries its own concerns and priorities, and I may go back and apply for scholarships in 2016. But for this year, if you want to apply for a scholarship, know that you have one less competitor.

That doesn’t mean I’ll be completely absent from everything this year. I get a lot out of going to diabetes events… I learn a lot, which is something I feel I need, and I can’t discount the interaction that goes on among people I can call friends now. But hopefully, those people are still my friends whether I’m there in person or not. And the fact is, I don’t really attend a lot in person anyway, and a lot has been done over the past couple of years to help get content online for people who aren’t able to attend something in person. In the end, I have an admitted desire to go to everything I can get to. But if I don’t make it this year, it’s not the end of the world.

You? You should go. Educate yourself. Meet people. Form bonds. Ramp up your advocacy. And if you need a little help to get there, always be on the lookout for scholarship opportunities.
 
 
 

Changing faces for a changing landscape.

Here are some random thoughts for you to chew on this weekend. I’m not suggesting anything here, just doing kind of a “what if?” riff in my head and spilling it onto this page.

I was thinking yesterday of the change at the top happening at both JDRF and the American Diabetes Association. Both CEOs are stepping down. Jeffrey Brewer has in fact already stepped down from his post at JDRF after four years, replaced by Derek Rapp. And Larry Hausner is leaving as CEO of ADA at the end of the month. No replacement has been named yet.

The American Diabetes Association and JDRF are by far the two largest diabetes organizations in the United States. Sometimes competing, sometimes not, they both look to raise both money and awareness for their cause. In JDRF’s case, “Less Until None” for Type 1 patients. And For ADA, to “Stop Diabetes” of all types, though almost by default, a lot of their mission is geared toward type 2s, who represent the overwhelming majority of diabetes patients worldwide.

I thought about this yesterday, and then thought of other big organizations fighting for recognition, donor money (both governmental and private), and volunteers to aid their missions. Love them or hate them, Susan G. Komen is the face of breast cancer awareness. MDA is the go-to group for Muscular Dystrophy. The American Heart Association is, for us in the States anyway, the reliable resource for all things related to heart health.

Yet I can remember, more than once, asking someone to donate to a JDRF fund raiser and being told “Oh, I already gave to ADA”. And Or vice versa.

Am I suggesting that ADA and JDRF merge their missions into one huge conglomerate of an organization? No. Never.Gonna.Happen. For about a thousand different reasons. JDRF is an international organization, ADA is only U.S.-based is the first. The other reasons are so many and so varied that I don’t really need to repeat them here.

But there are a number of facts that are changing the landscape of the diabetes community. Among them:

– An increasing awareness that the diabetes community has spent way too much time and energy in silos, leading to distance and even animosity between types.

– Recognition of the fact that this is changing, and Type 1 versus Type 2 versus insert-your-type-here is a dead end going nowhere.

– A widening awareness of D-stigma, and a growing desire to squash it like a bug on the windshield of a speeding automobile.

– The growing role of social media in our community, and how, like Moore’s Law itself, it is changing roles, perceptions, the number of contributors, and sources of income faster than ever before.

I wonder if this moment in time represents, in a way, a chance for these two organizations, and the greater diabetes universe, to look at their missions in a new light. How can we work together? What can we learn from each other? And certainly: How can we help patients people today while planning and adapting for the future?

I’m not sure these questions can be answered easily. But I think the best time to ask them may be right now.
 
 
 

Our latest #ChampDAthletes medal winner drives really, really fast.

Reed

Our latest Champion Athlete With Diabetes medal winner is NASCAR Nationwide Series driver Ryan Reed!

Ryan drives the number 16 Roush Fenway Racing Drive to Stop Diabetes℠ Ford Mustang presented by Lilly Diabetes (how’s that for getting all the sponsors in?). This is his second year on the Nationwide circuit, and his first full year driving every week.

I was able to chat for a few minutes with Ryan over the phone last week as he prepared for his first start at Iowa Speedway (he finished 16th).

First, ‘cause I’m a guy, I asked him about racing stuff: How things were going with Roush Fenway Racing in his first full year. I congratulated him on being ranked 10th on one of the most competitive racing series in the world (he moved down to 12th after Iowa, but that still means there are about 38 drivers behind him in the standings). He mentioned how things were going well, about as well as could be expected, and how it’s great being associated with such a professional organization. He’s just trying to learn all he can so they can continue to improve. What were the goals this year? Just want to continue to do well and make everyone happy. Sounds like my life, only 150 mph faster.

Then we talked a little about diabetes. Diagnosed three years ago at age 17, what was the initial feeling like after diagnosis, and how did it then feel once he got to a point where he knew he could still do anything he wanted to (except make insulin)? Well, the diagnosis was about the toughest time of his life. Since then, it’s been about learning as much as he could so he could confidently go behind the wheel again. He learned a lot at USC’s Clinical Diabetes Program under the direction of Dr. Anne Peters. They’ve also worked with Type 1 Indy Car driver Charlie Kimball. And that, along with the support of family, was just what he needed to get his confidence back. I would also add that getting the support of one of the most successful race teams in the country means others have confidence in him too.

So… what does race day look like for a driver with diabetes? It begins by making sure his Dexcom is working properly. The receiver is mounted to the dash in his race car so he can always see how his BG is trending. He has a special way to stay hydrated while he’s driving, with a dual unit that allows him to either drink water or a high glucose drink, depending on whether he’s trending higher or lower. If necessary, there’s a dedicated member of Ryan’s pit crew that has been trained and is ready to deliver an insulin injection.

I should also mention that Ryan is founder of his own non-profit, called Ryan’s Mission, that works to build awareness of diabetes and support those living with and affected by diabetes. According to the American Diabetes Association, “The Drive to Stop Diabetes℠ campaign, through Ryan’s Mission 501(c)3, will donate 100 percent of all net-proceeds to the Association.”

Yet another example of inspirational achievements from an athlete living with diabetes. Ryan Reed, we salute you!
 
 
So… what about you? How great would it be for you to say you earned the same medal that Ryan Reed received? I encourage you to nominate yourself or the special Athlete With Diabetes in your life today.

Four simple things will mint your medal, and only the first three count:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

If it’s a big deal to you, it’s definitely a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
 

Tuesday is ADA’s Alert Day.

alert-day-2014-banner-728x90

Tuesday marks the American Diabetes Association’s 26th annual Alert Day.

It’s an effort to find as many people as possible who might be at risk for developing Type 2 diabetes. They do that with a simple risk test. Many of us know that 26 million Americans are living with diabetes of one type or another. But did you know there are 79 additional Americans who are at risk of developing diabetes? Alert Day is designed to help people identify if they are at risk, and then encourage them to make healthy choices to help them do what they can to be as healthy as possible.

Part of our job as advocates, I guess, is to help educate people about diabetes, and help them get help when they need it. So… if that’s the case, maybe we should encourage those we love who aren’t living with diabetes to take this test.

One of the best things about that is the fact that Boar’s Head Brand® (the deli products maker) will donate five dollars to the American Diabetes Association (up to $50,000) for every test taken.

The test is available in both English and Spanish. You can find it on the ADA’s website at diabetes.org/risktest, or on Facebook at facebook.com/AmericanDiabetesAssociation.

Knowledge is power. Share this with someone you love today.
 
 
 

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