Tag Archives: advocacy

Perspective.

June 16, 2014 – 9:59 am

I had one of those conversations last week. I was talking about my recently completed clinical trial, and I was going into too much detail. It’s pretty clear to me that the person I was speaking to thought participating in the trial was nice. But what was being studied (artificial pancreas) didn’t interest them in the least.

I blame that on me. If you’ve participated in the Diabetes Online Community for any length of time, you probably know how keeping up with every last thing can take up a lot of your time. But have you thought about how it changes your perspective?

This writer thinks about it from time to time. I’m not so worried about the DOC taking up all of my time. I manage that as well as I can, sometimes great, sometimes not so great. That’s okay… that’s life.

What this writer is more personally concerned about is in translating my story for the masses. Not so I can get a T.V. movie about my life produced, or anything like that. More in the sense that, as an advocate for people living with and affected by diabetes, I need to find a way to connect the Average Joe with my story and your story.

Diabetes cost the American economy 245 billion dollars in 2012. That impacts the lives of people not living with diabetes in many ways. Insurance costs that increase because of more hospital stays that happen due to test strips being inaccurate, or because we don’t have a device that will safely help keep us from going low overnight. Additional costs to the patient for drugs that are amazingly expensive but absolutely necessary. Increased absences from work or reduced productivity due to any number of ways that diabetes tries to kick us every day.

Average Joe doesn’t need to know how an insulin pump or continuous glucose monitor or artificial pancreas works, but they need to understand why pumps and CGMs and artificial pancreas development is so important. I need to communicate the story of how improving the lives of people living with diabetes matters to everyone. Because it does. Part of my job as an advocate is to connect the dots, regardless of the level at which your pancreas functions (if it does at all).

So I’ve reached one of those points where I need to pull back a bit and think big picture. It’s not always about how the person with diabetes identifies with my story. Sometimes it’s about how diabetes affects someone else’s story, whether they realize it or not. Because it does.

I’m definitely a work in progress.
 
 
 

By StephenS | Posted in Advocacy | Also tagged | Comments (1)

No CGMs on Medicare? What????

February 18, 2014 – 10:23 am

On the heels of the Spare A Rose, Save a Child campaign, I’d like to ask for your help on another very important issue.

sue-b_head-square
Sue Berger, also known as Sue from Pennsylvania over at Test Guess and Go, is on a quest. And her quest is one that speaks to me, because in a little over 13 years, I’ll be right where her husband is. I’ll be 65 in 2027, and that means I’ll be getting pushed off to the Medicare system here in the USA.
 
 
 
Why is that a concern? Well, among other things, being on Medicare means you can’t have a CGM anymore. Oh, if you have deep pockets, you can buy one outright. But Medicare will not pay for a CGM. Doesn’t matter if you have one prior to age 65. Doesn’t matter if you need a CGM due to hypoglycemic unawareness, or just because it might help you actually stay healthier. It won’t be approved by Medicare.

Sue is working hard to change that. Up to now, she’s carried on a nearly single-handed campaign to get Congress involved. And guess what? Congress is now involved! Representative Carol Shea-Porter (D-NH) has introduced H.R. 3710: Medicare CGM Coverage Act. The resolution (H.R. stands for House Resolution) allows for coverage of continuous glucose monitoring systems if recommended by a doctor. In case your civics classes were decades ago like mine, the Act would have to pass the House, then get a majority vote in the Senate, without any changes to the Act. If the Senate approves changes to the Act, then it goes back to the House for another vote on the amended bill. If both houses of Congress finally agree on the final language, the Act goes to the President for his signature. So it might take a while, which is why your help is needed now to help get the ball rolling. Now.

As Sue mentioned in her post on this issue, a lot of the Diabetes Online Community has asked how they can help with her crusade. Well… here’s your chance. According to Sue, there are three things you can do to help get this wrong righted:

– The most effective step you can take is to ask your own Representative to cosponsor the bill. Good news! There is one co-sponsor so far, Representative Matthew Cartwright (D-PA). But we need many more!

– Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.

– Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (available on Sue’s post), along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on.

As sue says, “The only way to fight Medicare’s denial of the CGM is to get the guideline changed. The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014.”

This is a very important issue for me, because I’ll be in the Medicare system toward the end of the next decade. And if you live in the USA, you’ll be in the Medicare system at some point too.

At the beginning of this month, the DOC did a lot to help kids in developing countries get the insulin they need to survive. Let’s spend at least part of the second half of February fighting for those older Americans who, through no fault of their own, cannot get coverage for a CGM just because of their age.

To view Sue’s post at Test, Guess, and Go, click here.
The post also includes a sample letter you can send to your congressperson, and the Dear Colleague letter from Rep. Shea-Porter. She also has a kind of resource guide for bloggers to help with getting the word out.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (6)

February DSMA Blog Carnival. What is an advocate?

February 17, 2014 – 12:03 pm

The February DSMA Blog Carnival picks up on the advocacy theme that’s been prevalent in our community in the first two months of 2014. The question is:

What is your definition of an advocate?

Officially, dictionaries define an advocate as a person who speaks or writes in support or defense of a person, cause, etc. But an advocate is so much more than that.

To begin with, an advocate is someone who identifies with a need, an issue. They can see a problem, and they realize how this problem affects people. At this point, the need of others becomes their cause too.

An advocate wants to be part of the conversation surrounding their cause. They expect to be part of the solution. They protect those who are affected by the negative impacts of the issues they’re facing. They bring a voice to the voiceless, a spotlight to shine on their cause and the people affected by it.

Advocates marshal resources and raise money and set up tables and hand out information and give talks, so people not affected by an issue have an opportunity to become part of their team, the team fighting for improvement and empowerment for all who are part of our diabetes community.

What is an advocate not? An advocate is not someone who is afraid of the word “advocacy”. Admit it… that word makes you cringe a little, doesn’t it? Let’s get rid of the stigma of this word, and the feeling it gives us when we read it or speak it. Advocacy, advocacy, advocacy. Get comfortable with it. Advocacy, big or small, is good, and it should make us feel good when we define it through our actions.

In addition, advocates are not people who worry that they’re not good enough, or influential enough, or important enough to do anything meaningful. Here’s a news flash: You Are. They’re not concerned that whatever they’re doing isn’t big enough or special enough to be helpful. Fact: If you’re doing something to further the cause, no matter how small your effort is, you are a champion and worthy of the definition “advocate”.

Advocates are those who possess the empathy to identify with a need, and the resilience to do what they can to eliminate the need. They further the issue they’re fighting for, and they support and empower others who are doing the same. They are not afraid to do something that will help, no matter how small or big.

Advocacy comes in all forms. Bravery does too. If you speak honestly, with a focus on making things better for people living with and affected by diabetes, you are an advocate. And I thank you for what you’re doing for me.

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/02/february-dsma-blog-carnival-3/
 
 
 

By StephenS | Posted in DSMA Blog Carnival | Also tagged , , | Comments (4)

Remember to Spare a Rose… Don’t forget to Save a Child.

February 9, 2014 – 11:41 am

SpareARose

(click on the banner to give– now)

 
 
The Spare a Rose, Save a Life campaign is getting closer to its target every day. They’re $6,000 or so toward their goal of raising $10,000 by Valentine’s Day to provide life-giving insulin to children in need around the world.

The notion of the Spare a Rose, Save a Life campaign is simple: If your intent is to give a dozen roses to someone special this Valentine’s Day, why not give eleven and donate the cost of that 12th rose (about $5.00 USD) to the International Diabetes Federation’s Life for a Child campaign? Only $5.00… You can handle that, right? You might even be able to handle more than five bucks.

What does that money buy?
 
 
Five dollars provides life-giving insulin for a child in a developing country for an entire month.

Thirty dollars helps to keep a third world child with diabetes alive for six months.

Sixty dollars worth of insulin sustains life for a child with diabetes living in Haiti, Kenya, the Phillipines, and 40 other countries for an entire year.

There are just a few days left in the campaign, though you can give to Life for a Child anytime. Won’t you help? Let’s continue to show how special and giving the Diabetes Community is.

The need exists… Some have the means to help… And all of us have the ability to communicate. So join in the final push toward the goal for Spare a Rose, Save a Child. If you haven’t yet, consider making a donation today at sparearose.org/give. Or click on the image at the top of this post. Oh, and don’t forget to share this initiative with all of your Friends on Facebook and Followers on Twitter.

Let’s go over that $10,000 number and revel in the lives that will be saved through your efforts.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (1)

Show the love… for Life.

February 2, 2014 – 12:28 pm

SpareARose

(click on the banner to give– now)

 
 
Once again, the Spare a Rose, Save a Life campaign is in full swing. The notion is simple: If your intent is to give a dozen roses to someone special this Valentine’s Day, why not give eleven and donate the cost of that 12th rose (about $5.00 USD) to the International Diabetes Federation’s Life for a Child campaign? Only $5.00… You can handle that, right? You might even be able to handle more than five bucks.

What does that money buy?
 
 
Five dollars provides life-giving insulin for a child in a developing country for an entire month.

Thirty dollars helps to keep a third world child with diabetes alive for six months.

Sixty dollars worth of insulin sustains life for a child living in Haiti, Kenya, the Phillipines, and 40 other countries for an entire year.
 
 
The truth is, kids are diagnosed with diabetes everywhere. But insulin isn’t available, or affordable, everywhere. Even in places where a month’s worth of insulin is only five dollars, a diabetes diagnosis can be a death sentence.

But it doesn’t have to be. Let’s show our commitment to kids (and parents of kids) with diabetes everywhere. Click on the banner above, or go to sparearose.org/give to donate today. Tell everyone you know this February that diabetes doesn’t respect borders… and remind them that by joining the Spare a Rose, Save a Child campaign, thanks to your efforts and mine, children will live.

Who can’t fall in love with that?
 
 
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (2)