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Guest Post: Helping Scott.

Today, I wanted to share some words from Scott Benner, blogger at Arden's Day and dad to Arden (who has type 1 diabetes), to get the word out about his ambitious goal to help people with diabetes gain access to insulin pumps.  He's boldly asking for some assistance, and as someone who understands the importance of diabetes technology, I am happy to help him spread the word. Take it away, Scott!

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Scott and Arden

My name is Scott Benner. I’ve been a stay-at-home father since my son Cole was born in early 2000. My daughter Arden was diagnosed with type I diabetes just after her second birthday, in the summer of 2006.  Exactly one year later I wrote my first blog post on my site, www.ardensday.com. Through everything, the diagnosis, coming to terms, and taking control, I’ve learned many valuable life lessons. A few of them stand out above the rest: perspective is most important and you pay a heavy toll to have it, transparency only leads to good things, and I should be doing more.

It’s the last one that I have struggled to put into practice. I share on my site so other parents will know what to expect and hopefully feel less alone. I love writing and I treasure the experience of interacting with this amazing online community.  But there is one aspect of my interactions with all of you that leaves me feeling empty. I first wrote about it in an entry over two years ago entitled, ‘Time and distance lend perspective’. After seeing the positive influence that device technology available now to type I diabetics brought to Arden and my family, it saddened me to realize they weren’t available to all who wanted them. I said in part:

“Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive.  Children who are un- or under-insured are incapable of getting the relief that I described here...  I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one.  I am at the moment not sure how but I want to find a way to change that...”

It took me two years, a lot of courage gathering, and some brief but powerful advice from Kerri to be able to say this:  I am moving forward to establish a charitable organization with the single goal of putting insulin pumps and continuous glucose monitors in the hands of the children that need but can not afford them. The initial paperwork and boring behind the scenes stuff is a bit arduous but I have done my diligence, plotted a course, and announced my intentions on my site.

The reason that Kerri has so kindly given me this space is that I can’t completely afford the initial payments that are required to properly file the necessary paperwork to qualify for charitable status. I almost let that stop me but then I thought, “maybe others would be able to support this goal if they knew how focused, passionate, and truly dedicated I was to making it a reality”.

So here’s the pitch:

In a few days I’ve all ready received some amazing gifts from people like you. People I’ve never met in person, that have no real reason to believe in me, but who like me, put hope above all else. If you can see your way to hoping along with a dreamer, then please follow this link for details on how you can be a part of bringing something positive and wonderful into the world. A world where too many children live with their diabetes everyday without the tools that they want and need and deserve.

Thank you so much for taking this time with me!

- Scott Benner - @ArdensDay

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Thanks for your efforts, Scott, and good luck!!

Comments

Scott - I think this is an amazing idea! I am a young professional who works full-time and I am insured, but my insurance would not cover much of my pump at all. I put off getting one for several years because I could just not afford it. I searched for organizations that helped with the expense and I could not find anything. About a year ago I finally saved up enough money to get my pump and it has been life changing. I wish every person with Type 1 could have a pump without the financial stress. Thank you for doing this for all of us. You are AWESOME!!!

Amanda, Thank you so much for your thoughtful reply. I am putting everything that I have into this and expect great things and soon.

I'll have an announcement Monday that is pretty wonderful. I'll be sure to post a link here in the comments. Best to you!

This is a VERY sticky situation and has to be treaded on lightly. I work for a Medicaid organization that is run by the State. Insulin pumps are covered under Durable Medical Equipment (DME) in most states. Depending where you live, you may want to check and see if your child is eligible to get on the CHIP program. Of course there are many factors that your state looks at such as income, assets, etc.. However, please look into this. The program is in place for situations like this. A $6000 pump is unaffordable for most, not to mention the 90 day supplies that can run about $500 that accompany it.

Hello Wife of a T1,

I wanted to thank you for adding your comment! I have been working behind the scenes for some time to create relationships with device manufactures to address the traditional concerns with a foundation such as this. We are, as you can see from how I've chosen to begin, not going to be doing things the old way. In short, I have the 'right' brain to dream it and just enough left brain to make it happen. :)

Too often people have wanted to help but are thwarted by the entanglements they encounter. Luckily, I have just enough time and the right amount of hard-headedness to make short-shrift of those "problems". In a year's time I hope you can look back and say, "wow, that guy really made this work". Please come back to my site now and again to see how things are moving along.

I hope that people take the advice you gave and use every avenue available to get their children these devices.

Best to you!

Hi Scott,
I think this charity is a fabulous idea and would love to see it work. Here is my question.. it is not just getting the insulin pumps and CGM's into the hands of children with type 1 whose insurance does not cover, these children must also be able to get the proper training and education on how to use these pumps. Does your idea for this charity include getting solid training and regular medical care for these children? The insurance needs to not only cover the pump but cover the visits to a qualified pediatric endocrinologist and diabetes educator ( without which the pump and CGM would not be very useful) I am interested to hear your plan for this. Thanks
Lisa

Your post/idea is so inspirational. I've been a type I diabetic since I was 8 years old and had to wait until I was working full time post college for a year and prioritize between a new car and a new insulin pump in order to afford it. This is a great idea, I wish you the best of luck.

So many great things have happened just in the last few days and many of them are from the exposer that I received from Six Until Me. I can't wait to tell you all about it.... soon! Kerri has an amazing group of readers, you're all to be commended!

Scott

Reading your post as a Type 1 law student, I had the instant urge to volunteer my developing legal skills and knowledge to help organize your foundation before I remembered I'm (essentially) not allowed to provide legal services or advice until I graduate. However, I think my instinct has value: if legal costs are a major impediment to realizing your foundation, in addition to monetary fundraising, why don't you also find attorneys willing to volunteer their time and services? Most large firms devote a significant number of hours to pro bono projects, and I have to think there are a least a few lawyers with diabetes or are close to someone with diabetes roaming around willing to help. Good luck and thank you for putting your time and energy into providing access to better care!

In celebration of World Diabetes Day I have a three year supply of the Spring Universal Infusion Set to giveaway to one child in need. If you know of anyone that would benefit, please direct them to this link -

http://www.ardensday.com/main/2011/11/11/spring-universal-infusion-set-giveaway.html

I have been a Type 1 diabetic for over 25 years and have been on an insulin pump for the past 10 years. I have also started using a CGM. These devices have truly changed my life. However, if not for the awesome insurance that I have I would probably not be able to afford them. This is the first time I have made a donation to a cause that I feel such a passion for. It would be wonderful if every diabetic child could have the means to control their diabetes as well as possible. Thank you Scott for trying to make this dream happen and best of luck!

I'm going to cry, check out the new gift total - http://www.ardensday.com/ardens-day-gives/

The DOC is everything that I thought it was.

Brenda, I'm going to honor your faith in a big way! Thank you, thank you all so much!

Amazing stuff Scott, and thank you for having the courage to dream stubbornly. :-)

Things with the formation of the charity couldn't be going better, thank you all!

I will be involved in a number of meetings and presentations over the coming weeks and months and I was hoping that you could help me to better understand how the costs associated with managing diabetes effects your financial life. I am very interested in hearing from the parents of children with type I but if you are an adult with diabetes I am still very interested in your answers - you never what the future will bring.

http://www.ardensday.com/main/2011/12/9/your-opinion-is-needed-insulin-pumps-and-glucose-monitors.html

What a wonderful idea. My daughter was diagnosed at age 9 and my son at age 13. My daughter is now 31 and has had a pump for quite a few years. However, her husband's insurance will not cover the pump or the monitor, so she has had to go back to shots. I would love to see something done to help Type 1 diabetics be able to get the pump when insurances fail them. Thank you so much.

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