diaTribe Petition: Please help

from the diaTribe petition at change.org

At a recent meeting of Oregon’s Health Evidence Review Commission (HERC), the state panel recommended reducing access to test strips for people with type 2 diabetes on the Medicaid-funded Oregon Health Plan (OHP). A new plan would severely restrict access to strips for type 2 patients unless they are newly diagnosed, take insulin, or meet a few other special requirements. For people not taking insulin – which covers the vast majority, about 70% of all type 2 patients – those with an A1c above 8.0% would be entitled to one test strip per week, while those with an A1c below 8.0% would not be provided with any test strips at all. 

This recommendation would severly limit test strips and set a dangerous precedent for other states looking to cut overall health care costs. It's difficult to understand how the HERC imagines people with an A1c below 8.0% will manage their diabetes without test strips, and a test strip every week is hardly meaningful for patients or providers. Furthermore, any cost reductions will likely be more than canceled out in the long-term due to increased complications, hospital visits, and operations that inevitably folow poor control. The decision is currently scheduled for December 5. If you are a person with diabetes or a caregiver, we encourage you to sign this petition and write to Oregon Health Authority’s Director Dr. Bruce Goldberg and the members of the HERC about the importance of having access to test strips and self-monitoring blood glucose.

Read more about the issue and what you can do at diaTribe.org 

Add your name to the petition

Update on Wednesday, December 11, 2013 at 9:40AM by Scott Benner

Your participation made a difference! Read the update from diaTribe.

Karma Ebbs, Karma Flows

As you read keep this thought in the back of your mind... "The story is about a juice box that saved the day"

This story begins weeks ago on a day that was one hundred and fifty percent unlike any day that I've ever experienced. I woke up early that morning to travel to New York City to be part of a panel of stay-at-home dads for an episode of the Katie Couric Show. A shiny black car arrived early that morning to transport me for a few hours to a world that I'd never before seen. Green rooms, backstage areas, even people styling my hair and applying makeup to my face - it was strange, fun and more than a bit exciting. When my time on television was over, I climbed back into the shiny chariot only to find an email from the National Basketball Association that featured a story about me. I read the article (written by the DOC's own Moira McCarthy) and then closed my eyes for a few minutes because I was already exhausted from the day. I needed to catch a bit of sleep on the ride home because this crazy day wasn't nearly over, I still had to sign books at a Barnes and Noble in Philadelphia that evening, like I said before... a day like no other.

So to recap the morning... Fancy black cars, Katie Couric, I met Steve Schirripa from the 'Sopranos' in the makeup room, joking in front a a live studio audience and a my name on an NBA email blast that landed in a half of a million inboxes across the country. And in a few hours I was going to get to sit in a book store and sign my book. All extraordinary stuff that no one imagines will ever happen to them, and it was happening to me all on the same day.

The book signing went great, one of the real highlights was when I met a gentleman who reads Arden's Day and his son. The best part of the night? Arden came with me to the signing. Perhaps this book writing thing will lead to more and maybe it won't, but for a few hours that night my little girl got to sit next to her dad as he signed his name in a book he wrote. You don't get too many opportunities in life to be a hero to your kids, this day was special. 

As Arden and I drove home that night through a teeming rain storm, we talked about the day. She asked me about what it was like to tape a TV show and we anxiously spoke about what the vacation that we were leaving for in two days would be like. It was as we were talking about our impending trip that I saw a small group of children standing on the side of the road. I instantly wondered why they were outside in the rain and it was so late at night. Then I got my answer out of the corner of my eye when I witnessed one of the kids reaching back as if they were going to throw something. I remember thinking, "Aw fu$k...". 

Bang, pop, thump, thump, bang, bang, crash...

The right side of my car was being pelted by hooligans, malcontents I tell ya... We were under attack. I stood on the side of the road staring through the rain hoping that I could see one of the little bastards, but they were gone. Arden was frightened, I was angry and the rain wasn't giving up, so I got back into the car and we went home. I stood in the rain washing my car and wondering what the light of the next day would reveal. When I woke the next day I was greeted by multiple and significant points of damage. I informed our insurance company and we left for our vacation.

Fast forward to yesterday...

This morning the insurance adjuster came to our house to assess the damage. A few minutes before the adjuster was finished, Arden wandered outside with that "just woke up" look on her face to find out what was happening. As she was fresh from her bedroom, Arden had her bag full of D-Tech with her. OmniPod PDM, DexCom receiver, MultiClix and a juice box all in a small leather purse. She set the bag down on a box in our garage and walked over to me to find out what was going on. Arden and I decided to pass the time as we waited for the gentleman's assessment by cleaning up the garage and taking the recycling down to the corner. 

Soon enough the adjuster finished and I asked Arden to move out of the way so I could put my car back into the garage, but she wanted to ride with me for the ten foot trip and so she climbed into the passenger side instead.

Moments before I was joking with the insurance guy about the day that my car was attacked. I told him that I must have used up all of my allotted good karma when I found myself on TV and at a book signing all on the same day. He laughed and as I sat down in my car to put it back into the garage, I quipped through the window, "I guess the universe was rebalancing itself when those kids pelted us". Then Arden and I drove forward...

POP!

I jammed on the brakes and my stomach dropped as I remembered leaving Arden's bag on the floor when we took the recycling to the street. I backed up slowly and Arden jumped out to see what made the loud pop but I already knew it was her bag. I felt sick when I realized that I drove over her PDM and DexCom receiver. I thought I was going to throw up... But it turns out that the pelting my car took all those weeks before must have been an overcorrection, and it seems that the universe owed my a credit. 

It was a juice box that exploded and acted as a warning signal to stop. Not only that but the juice was in a separate compartment so none of it got on the electronics. I was about to drive right over Arden's PDM, DexCom, MultiClix, and her bag but that little juice box happened to be on one end of the small bag while all of her gadgets were on the other. Thankfully, the juice was closer to the tire than the electronics and they remained untouched by my car's tire. 

Karma ebbs, Karma flows...

Arden pulled her gadgets from the bag and placed them onto the seat that she just vacated and said, "Well... this is the first time that I don't hate those juice boxes". ––– I thought to myself, "Me too".

Mail Order Medication Exceptions: Did you know?

Well I guess that you do learn something new everyday...

We are leaving for a family vacation next week so I went online and ordered a few diabetes supplies that we need for the trip. We use a mail order pharmacy and when I placed the order on their site, I was told that our insurance wouldn't allow Arden's Apidra prescription to be refilled until the 9th of June. This normally wouldn't be an issue but since we are leaving only a few days later, the insulin wouldn't arrive in time. 

So I called the 800 number and do you know what I found out?

There are exceptions that our plan allows for. I never knew before but I do now and I hope that you find out that your plans have similar fail safes built in. The best part of the exceptions? They trump insurance rules and restrictions! When the CSR tells the system to enact a restriction the order sails through the system and nothing can hold it up. Sweet!

I was told that there are three types of exceptions and that they each can be used three times a year if necessary, they are:

Emergency Exception: In case of an emergency, any emergency, I can call and have supplies sent that we require. 

Therapeutic Exception: Let's say that Arden suddenly begins to require far more insulin than she has in the past. Until I can get to her Endo and have the prescription rewritten, I just use the therapeutic exception.

Vacation Exception: Going away? Need extra stuff? Not time to refill yet? No worries... "Hello, I'm going on vacation, please send some more Apidra".

I hope that this information finds you well and is helpful the next time you run into a supply issue.

Hurdles and hoops

I believe that we all lead similar lives. Our homes are different shapes, our sofas different colors, but generally we all struggle with similar issues and think about many of the same things. On any given day I wake up, go directly to Arden's room, check her BG and then begin my day. In the course of that, and every other day, I have tasks to complete, responsibilities to see to, worries to ponder, and relationships to foster. The minutes pile up to form hours and in the seeming blink of an eye, the day has ended. Most days feel like I've navigated, instead of lived them. 

Each of our two children has their own life that we oversee. School, friends, activities, hunger, health, questions, morality, free time and entertainment. I have the same issues in my day, as does my wife. Additionally, there is work, commuting, debts, and this one strand of carpet that I have to glue back into place as soon as I can find a free second.

Leaves fall from our trees, we pick them up. The floor gets dirty, we sweep it. I get sick, Kelly is tired, my son is learning to be a young man. Cooking, cleaning, shopping, paying. I don't eat the way I should, and that reminds me that I don't exercise the way I should. I reacted poorly to something my wife said, I don't know why but I want to think about it, I want to apologize and really mean it. I would too, if I had the time.

The garbage disposal stopped working, it's okay, I fixed it. Laundry, oh the laundry, it won't stop. Last week we had the JDRF Walk, Hurricane Sandy, my car broke down, and my son left his bat bag across town. Tick, tick, tick, the days fly by, this is life, I'm not saddened by it or even slowed down. This is about what I expected, it's fair, it's what we all do. I'm not complaining, merely shining a light on it so I can say this... People's lives are full, on any given day we all have enough to deal with. An average day offers enough challenge, it's normal hurdles are plenty to keep us busy. When a chronic illness is added to your life everything is magnified by a million. The work, worry, struggle, pain, sadness, effort, it's all magnified. One day a piece of technology comes into your consciousness, a gadget you can't really afford, and don't actually want, but it will help you manage your day a little easier, keep you a little more healthy. Perhaps it can stop something bad from happening. It's like an oasis when you realize it's potential, music plays in your head, stress begins to lift... and then the hurdles appear.

My fuc*ing insurance company changed some bullshit rule and now I have to jump through even more hoops to get Arden her DexCom G4. I need, I really need some bureaucrat, some bastard whose only interest is creating a new process that squeezes two more cents out of the consumer. I need that bag of crap to push a paper from this side of his desk, to that other and make my day just a little more stressful and complicated. I need another hurdle, another task that takes time from the things I actually wish that I could do, the things I want to do, the stuff that might make our lives; better, more loving, fulfilling, easier. 

There are always going to be people and entities that pray on others, but I hope that there is a special place in hell for the ones that line their already full pockets by forcing people that live with diabetes and other life changing, and chronic illness to experience more stress then they already do. Be ashamed.

"I'm sorry but this isn't approved for people under 25". "We only cover 6 strips a day". "Has she had a seizure... she has, good!".

We live a life that includes the possibility of seizing if we take or give too much medication. As screwed up as that is, it's also a life where some faceless person on the other end of a phone call will act like having one of those seizures is good news. They don't have that reaction because the are callus, they have it because the system they are trying to exist in requires something bad to happen to you before it will let you protect yourself. Then, just in case all of that isn't bad enough. Just in case my family actually having to live through a seizure wasn't enough. Even though I'll never, ever, as long as I live, forget the helplessness that I felt as Arden's brain scraped and sputtered to stay alive. Now I need to recant the story to a phone jockey at my insurance company just to keep a benifit that we already have, and then she says, "good". She didn't mean "good", I know that, she meant, "I can use that information to get you..." but she said good, and I had to act like this was happy news.

I didn't have the time or energy to correct her, I just wanted to get off the phone. I had dinner to make, my son needed help with a project, Arden's BG was too high, our dog needed to be walked, my car picked up, there was just a hurricane. Oh and I'd like to sit down for five seconds before I stay up half the night to watch my daughter's BG. 

After a week, countless phone calls, dozens of left messages and emails. Three misunderstandings and an argument that I still don't understand. Arden's DexCom G4 is on the way. In the past, I would have just called DexCom and it would have shipped in a day, but now, now there's a third party supplier, insurance questions, phone calls, emails, and a thousand hoops and hurdles. The best part is that in the end, the exact same thing happened as before. They shipped it. I lost hours and days from my already over-taxed week, but I don't think that they care.

Ignorance + Greed = more money for them and less life for us. Next time my insurance company needs to make an extra dollar I hope they just break into my house and take it. At least then they'd be a proper criminal. 

Please remember that my story is about a CGM, many people have this same story about insulin, test strips, and other much more basic and needed supplies. We shouldn't have to fight to be healthy, and we certainly shouldn't have to give up our already precious minutes to wage that fight.

I want to thank the good people at DexCom for helping me to navigate the third party medical device supply world. This would have taken so much longer and been even that much more aggravating without your guidance.