Category Archives: publicity

When the Only Choice is No Choice

UnitedHealthcare reached an agreement with Medtronic to become the preferred, in-network durable medical equipment (DME) provider of insulin pumps, effective July 1, 2016. (Source)

Even if you and your doctor decide a different company’s insulin pump is right for you, you won’t be able to get it through UnitedHealthcare unless you pay out of pocket for it, because their preferred company is now Medtronic. This is kind of like how the insurance companies currently dictate the brand of meters and test strips you’re able to get.

And it’s bad news bears for those with T1D and UnitedHealthcare. 

When an insurance company dictates my therapy, they’re possibly inhibiting my quality of life. If I have to be attached to a medical device 24/7 for 4 years, I want it to be 1) something I like and 2) something that works for me. And my diabetes is not the same as others’ diabetes, and pumps are not one-size-fits-all. 

I appreciate Tandem immediately issuing a statement. Their CEO is quoted in the image below, and I couldn’t agree more. 


If this is the new direction medical insurance and healthcare is going, then it’s going to get really, REALLY bad for us. It’s not like I can very easily (if at all) choose a different insurance provider that works with the pump company I prefer! 

So what do we do?

Well, I’m making as much noise as possible on social media. And a lot of others are too. I’m tweeting with the hashtags #mypumpmychoice and #patientsoverprofits and tagging UnitedHealthcare in those tweets. I’m sending information on this change to every diabetic I know so they can make noise too. 


It may be a dull roar right now, but this is very quickly blowing up. I’m hoping for a firestorm, and for UHC to realize how asinine, degrading, and greedy their new policy is. 

Advertisements

Leave a comment

Filed under Insurance, publicity

A Casket, Too Small

The day Kycie passed away, the Diabetic Online Community was also circulating news about another sweet child, David. He had been hospitalized with sudden onset type 1 diabetes and his dad was reaching out to the DOC for prayers. 

  
On one of the posts, I saw it mentioned that David and his family were from Michigan. So I reached out to my friend Dorrie of Saving Luke on Facebook because I knew she had been in contact with David’s dad, Dave. She connected us and I spoke briefly with Dave on Sunday to offer my assistance in any way possible. Later that day, David was removed from life support and passed away. 

  
I knew I had a busy week ahead of me but I wanted to attend the visitation if at all possible. Luckily I was able to bump my doctor’s appointment on Thursday up an hour, so after that Allen and I headed to his visitation an hour and a half away from us. 

David’s family were all so sweet and although the circumstances were horrible, everyone seemed very upbeat and hopeful. There was such a peace on them all, of knowing that David was in Heaven. Dave was so thankful that I made the trip for them, and I told him that they were part of the DOC family. Dave also said they were blown away by the outpouring of love and support from the DOC. 

   
I’m glad I was able to go. It was sad, but humbling. It could have been me. It could have been any of us. It reinforces the fact that we need a cure. Kycie was five, David was four. Little humans, taken too soon. 

3 Comments

Filed under publicity, Real life, Support system

Kisses

This week has been a crazy one for the Diabetic Online Community. First we went through Crossfit’s attack on diabetics and the overwhelming response from the DOC that went largely ignored. Then we received good news in the form of the iLet dual-chamber Artificial Pancreas being announced at the Friends for Life 2015 conference. But today we took another devastating blow as Kycie Jai Terry passed away unexpectedly early this morning.

11737969_488367501318304_5618616733613024522_n

Kycie’s story started on a Monday in January with this precious five year old complaining of a tummy ache. Doctors said she had the flu and sent her home. By Friday, she was having seizures and being life-flighted with a correct diagnosis – Type 1 Diabetes.

10523981_418960814925640_6053950619674548496_n

Kycie suffered extensive brain damage but at every turn, she beat the odds and floored everyone’s expectations. Earlier this week, she was in the hospital but she was released earlier than expected due to the fact that she was recovering so well. It was an absolute shock this morning to see that she had passed away.

Through Kycie’s [mis]diagnosis, her parents via the Kisses for Kycie Facebook page were able to reach thousands of people with Kycie’s story and at last count, more than 20 children were correctly diagnosed with T1D directly from seeing posts from Kycie’s page.

I didn’t know Kycie personally, but seeing this brave warrior lose her fight hits close to home. As a victim of misdiagnosis myself that resulted in five months of physical, emotional, and psychological suffering, I feel connected to the Terry’s and their cause. All it takes is one finger poke. That $1 test can make all the difference.

11181281_486528711502183_3729581556545455788_n

This is why I advocate. This is why I won’t be silent about this disease and everything it entails. Kycie could have been correctly diagnosed with Type 1 Diabetes on Wednesday when her mom took her to the doctor, rather than between seizures on Friday in the ER. She could have been a lovely, thriving five year old with a sub-par pancreas. Instead, she’s an angel now.

Please, know the symptoms. Request a finger poke.

Fly high, sweet girl.

11536416_485005318321189_1211935397468404101_o

3 Comments

Filed under publicity, Real life

The Cost of Living

The other day I saw an article in Time saying that The United States is the most expensive place in the world to live with type 2 diabetes. It got me thinking that I haven’t discussed the financial burden that comes with being diabetic.

This is a standard bottle of insulin. Everyone’s usage varies, but I usually use 1 bottle per month. Being type 1 diabetic, I must take insulin every single day or I will die. So how much does insulin cost?

Continue reading

3 Comments

Filed under publicity, Real life

The Legendary “Artificial Pancreas”

There has been a lot of buzz recently regarding Medtronic’s new 640G insulin pump. Released to the public in Australia this week, it is the first insulin pump to suspend insulin delivery when it predicts there will be a low blood sugar event (this differs from the 530G model which suspends when a low blood sugar level is reached.)

But a lot of news outlets have been touting it as an “artificial pancreas.” But is it really?

MiniMed-640G-Torso-Shot-High-Res_300px

Continue reading

3 Comments

Filed under CGM, publicity

World Diabetes Day 2014

Today is World Diabetes Day. It is the one day of the year that has been internationally recognized as the diabetes awareness day. All day, my social media accounts have been bombarded with awareness efforts, and it is truly amazing to watch the community come together over something so important.

I issued a call to action on my Facebook page, urging my friends and family to wear blue (the officially recognized color) in support of the diabetics in their life, and take a photo of it. The response has been so touching.

Continue reading

Leave a comment

Filed under publicity, Support system

#DOCasksFDA

Today the Diabetic Online Community and the Food and Drug Administration came together and had open discussions about diabetes care, daily life, struggles, shortfalls, and hope.

docasksfda

Why is this a big deal worth blogging about?

Because this meeting is unprecedented. The FDA has always been viewed by many as a cumbersome, slow-moving, necessary evil of diabetic life. The fact that the FDA was so willing and open to meeting with key members of the diabetic community is incredible.

Continue reading

1 Comment

Filed under publicity

A Call to Action

Every day, I see people with diabetes and their loved ones doing amazing and inspiring things. Often I want to post about them here, but there are just so many it would be overwhelming. However, this one I need to share…

IMG_0332.JPG

This is Luke and his diabetic alert dog, Jedi. I had the pleasure of meeting Luke, Jedi, and Luke’s family while we were on vacation in California. (and Jedi even alerted on me while I was there!) Their Facebook page is how I found out about the world of diabetic alert dogs, how I met their friends including Frank and his family whom we stayed with in California.

Their Facebook pages showed me a different side of diabetes – the side of parents who are doing their best to be pancreases for their kids, and doing so with grace and poise and a little kick-butt attitude. My personal friendships with Frank and Luke’s mom, Dorrie, have brought me so much knowledge, support, confidence, and love. I’m indebted to them forever.

IMG_0331.JPG

Luke’s family is attempting to fund a documentary that will show the ins and outs if life with Type 1 Diabetes – the good, the bad, the ugly, and overall the honest truth. This documentary would be available for free and able to be shared with everyone.

They want this documentary to change the stigma around type 1 diabetes. And I want to help them make that happen.

Please, if someone you love has diabetes, consider donating to the kickstarter fund to make this documentary a reality. It will change lives – I guarantee it.

Click here to donate.

Thank you. And now, back to your regularly scheduled programming.

Leave a comment

Filed under publicity, Real life, Support system

A Little Less Alone

I love meeting other type 1 diabetics in person. Growing up, I only knew of a couple kids in my school who had T1, and I wasn’t friends with most of them. One I was, but all I knew is that his pancreas sucked (because he had a t-shirt that said it) and sometimes he’d have to take a break from playing tuba to eat something. Even now, I know only a handful of T1’s in my city and rarely see or talk to any of them.

So when I have the opportunity to meet another T1, I’ll do almost anything to make it happen.

Jade2

This is Jade. She’s had T1 for 13 years, having been diagnosed several years after her brother was. Yet she’s a DJ for WRIF out of Detroit, on top of being a wedding DJ on the side.

Continue reading

2 Comments

Filed under publicity, Support system

#WaitingToNotWait

If you have been part of the DOC for any amount of time, you’ve probably seen the hashtag #WeAreNotWaiting moving around Facebook, Twitter, and numerous blog sites. While I have not been able to participate, I’ve had the pleasure of watching the Nightscout / CGM in the Cloud project grow at an astronomical rate and touch thousands of lives.

So what is Nightscout and why are people not waiting?

Screen Shot 2014-09-23 at 9.51.59 PM

Continue reading

4 Comments

Filed under CGM, publicity, Real life, reviews