Guest Post from the ADA: When to Reach out to the American Diabetes Association
After I interviewed Anisha Dharshi from the American Diabetes Association for episode 40 of my podcast, I asked if she'd be interested in preparing a guest post for Arden's Day that detailed how parents and people with diabetes can utilize the ADA's free assistance program (it was a topic we talked about on the show). I sincerely hope that you never need the ADA, but if you do... they can be a great resource!
When to Reach Out to the American Diabetes Association
If something does not feel right, it may not be legal.
Reach out if your child is not getting the right diabetes care at school, or you are not being allowed to test your blood glucose levels at work. The American Diabetes Association can help. The Association has representatives waiting to speak, chat online, or email with you to help avoid problems and find solutions when problems do occur.
How to Get Help
Call our Center for Information at 1-800-DIABETES, there a dedicated representative will serve as your personal guide for information on all our programs and events by answering your non-medical questions in English, Spanish or other requested languages.
If you prefer to Email us at askada@diabetes.org, you will receive an reply with information and the next steps to take within 24 to 48 hours.
What Happens Next
The Center for Information will give you a form to complete and return to the ADA. If you don’t have time or cannot complete the form, please ask your ADA representative for help.
A Legal Advocate will contact you within 7-10 business days after receiving the form. The advocate can explain the law and help educate your school or business about its responsibilities, help you negotiate a solution and give problem-solving tips, give sample letters and background resources and review your materials. If you need to litigate, the advocate will refer you to a network of local attorneys.
ADA Center for Information Hours:
1-800-DIABETES: Monday - Friday, 8:30 a.m. - 8:00 p.m. EDT
Live chat: Monday – Friday, 8:30 a.m. to 5:00 p.m. EDT
askada@diabetes.org is available 24/7/365
The American Diabetes Association has been a resource of reliable information and support to people living with diabetes and their caregivers for 75 years. The Association’s Safe at School® campaign is particularly dedicated to making sure that all children with diabetes are medically safe at school, are treated fairly, and have the same educational opportunities as their peers through tools, resources, and the guidance our legal advocates provide to families. For additional information please visit the Association’s legal assistance webpage.
You can listen to my conversation with Anisha below, on iTunes, at JuiceboxPodcast.com and everywhere that podcast are available.
Having a Happy Thanksgiving with Insulin
What do you think about when I say the words mashed potatoes, stuffing or pumpkin pie?
Most people hear those words and think "mmmmmm, it must be Thanksgiving" but some of us immediately begin to wonder how many carbohydrates are in stuffing. Many of the people who live with or care for someone who lives with diabetes, begin to panic. Instead of family and football they begin to think about Thanksgiving as a day that is trying to defeat them, they immediately feel stress and either decide to, sort of just give up and "do their best" or search for the measuring cups focused on getting the carb counts of every tasty Thanksgiving treat exactly right. In my opinion; there is a better response.
When I'm giving my daughter Arden insulin at a meal I focus on two things - How insulin works in her body and about how many carbs are in the food she is eating. In an effort to keep this, if you'll pardon the pun, digestible... I'm going to break this post into individual thoughts on subjects.
Questions I ask myself before I begin...
Is it more important to know A. exactly how many carbs are in a scoop of potatoes or B. how long it takes for insulin to begin to effect the blood sugar and how long it lasts in the body? - Answer is B
Will the day include a lot of grazing, am I planning for set meal times or is it both?
Do I have a reasonable understanding of the amount of carbs in the foods that will be consumed?
Am I afraid of insulin? - Be honest with yourself
My Goals...
My blood glucose goals for Arden are simple, yours should be too...
I am trying to maintain the steadiest blood sugars as I possible can. I want to avoid spikes and significant lows.
I consider a BG over 150 (after food) a high blood sugar.
I do not want Arden's BG to fall below 75 but steady at that number is a huge win, especially today.
For CGM users: I don't want to see arrows pointing straight up or straight down. If I do, I've mistimed insulin, miscalculated carbs or (for pump users) would have benefited from extending my bolus. When we were non CGM users: If Arden's BG is above 150-160 forty-five minutes after your mealtime bolus, you probably didn't use enough insulin. More insulin, more testing.
I want to create a stress free, carefree and happy day without frying my brain.
Insulin...
I have two steadfast rules about managing my daughter's type 1 diabetes. Read them, memorize them, live by them.
1. It is far easier to stop a low or falling blood glucose then it is to return a high blood sugar to a safe range. In my experience most low or falling BGs can be stopped and steadied in a short amount of time, maybe 15 minutes. A high BG can take 3 to 5 hours to return to a safe place. I'll say it again. It is easier to stop a fall or a low then it is to effect a high. This thought guides everything I do with insulin.
2. If Arden's BG is high any time after a meal (140-150), I did not use enough insulin at the correct time. Two VERY important considerations in this sentence, they are AMOUNT of insulin and the TIMING of the bolus relating to when food consumption begins.
Before we move on I want to say this, these are my rules but you know as well as I do that diabetes will, on some random day, act in no way like you expect. That is a fact of living with manmade insulin. I refuse however to allow the fear of that random day to make me except high BGs on all of the other days. I would rather battle a low a few times a month then live with a daily average BG that is any higher than it needs to be. Bold with insulin!
Lets talk about giving insulin for a meal...
There are generally one of three situations I experience before a meal. 1. A higher BG then I want, 2. A lower BG then I want, 3. A BG in our comfort range. All of these may be steady, rising or falling.
Let’s have some examples:
Step one for each possible situation is to pre-plan. Don’t start thinking about insulin at 4:55 if dinner is at 5, if that’s what you are doing... I’m willing to bet you see a lot of high BGs after food.
If our dinner is at 5 pm, I want to find out what Arden's BG is at 4 pm.
If Arden’s BG is 160 at 4 pm I would bolus for the 160 with the goal in mind of getting it as close to 90 as I could by 4:45 pm because (in this example) at 4:45 pm, I am bolusing for dinner. Here’s me counting carbs. Scoop of potatoes… eh 30. turkey 0, gravy, let’s call that 7, probably have two dinner rolls… I’ll call that 30, corn lets say 10, green veggies nothing. Okay that’s about 80, how much insulin is 80 carbs? Last thing I do is ask myself if the amount of insulin that 80 carbs indicates sounds like enough or too much? “Sounds like” means based on my past experiences with similar meals. If it doesn’t, I adjust it manually. One way or the other I’m hoping to have a 90 BG 15 minutes before the meal begins and I am bolusing with the thought that the mealtime insulin (In Arden) won’t begin to work for at least 15 minutes. The goal is for her BG to be 80ish when two things happen. 1. Her mealtime insulin begins to work and 2. The carbs from the food begin to have an effect on her BG. I want these things to happen at the same time when her BG is around 80. Then I watch the struggle between insulin and carbs play out on her Dexcom CGM. Most times this results in no spike and a steady BG for the next two hours. Adjustments (In Arden) may be needed around the two hour mark. More insulin, some carbs… one never quite knows.
A steady and in range BG gets the same pre bolus. Again, I want the struggle between the carbs and insulin (insulin pulling the BG down, carbs pulling it up) to happen as close to the 70-80 range as possible.
If Arden’s BG is low or falling an hour before dinner I only want to bump it ever so slightly. I don’t want it rising or high at 4:45. On the lower side is a great way to approach a meal - But you still have to pre bolus. I can’t say to myself, “her BG is 80 at 4:45 pm so I can’t pre bolus”. I have to trust the process, I have to trust that new insulin won’t cause a low for at least the amount of time that I believe it takes for the pre bolus insulin to begin working.
In the end, I can count the amount of times on one hand that a meal has gone well without a significant and well timed pre bolus. Only you know how long it takes for insulin to begin working in you or your child, so adjust accordingly with great deference to how long it takes the food to begin to effect the BG.
Remember, it is easier to effect a low than it is to correct a high....
I know there is a ton of other variables that I haven’t discussed. What if my child is too young to properly assume how much they will eat… in that situation I'd pre bolus half and then get the rest of the insulin in as soon as I could confirm that the food will be eaten. Easier with a pump sure, but even when you are injecting... it’s either two shots at dinner or one shot at dinner and another an hour later while you are battling a 300 BG. Which sounds better to you?
Arden has a CGM which makes all of this so much easier. I can see when she’s falling 5 minutes before we eat and hand her a roll. I can see the speed and direction that her BG is moving. No doubt what I am talking about is easier with a CGM but it is not impossible without one. Pre bolus (or inject), test 45 minutes later, test again 2 hours later. Stay on top of the BG.
Don’t fall prey to the drama! Don't ell yourself that, “I did what the endo told me” or “I counted the carbs, what else can I do”. That's all bull%$#&. You can do plenty with a positive attitude and a calm reaction to the things that don’t go as planned. Keep it easy in your mind; BG too high, need more insulin. Too low, need more carbs.
Is it a grazing day? Try using a temp basal rate. Perhaps an increase of (maybe) 30% to start, then adjust as needed. Don’t be afraid to let it run all day and don’t forget that the effects of a new basal rate may not be visible on a BG for 30 minutes to an hour. Also, when you stop a temp basal, it will take that much time to return to a level that you are accustom to.
I won’t let a BG that has gotten crazy high ruin Arden’s day... I crush it with insulin. Then test often or watch my CGM closely - sometimes both. If it falls too far or too fast, I catch the fall with a fast acting liquid carb. I give myself enough time to treat the fall without having to over treat - stay off the rollercoaster! Sometimes the hardest thing to do is to just wait and retest, I know, but that is how you will avoid chasing highs and lows all day. At some point you have to say to yourself, "we need to find a plateau and start over".
Last things and this is important. Lots of insulin is going to be used today. Watch your overnight BGs closely. Look for lows, unexpected falls and even high BGs from those carbs that just won’t digest and be gone. No telling which reality you’ll experience over night. Best to be on the look out. Give yourself a chance to battle on a level playing field, don't begin Thanksgiving with a pump site that is failing or on it's way out. Get your tech going and stable before the stuffing hits the table.
Wishing your family a very Happy Thanksgiving… don’t forget my disclaimer nothing you read here today is to be taken as advice, medical or otherwise. I’m just telling the story of how I manage my daughter’s BGs. Okay, thats enough diabetes talk for me today, I have to got make the stuffing!
Go kick some carbs right in their ass! You can do it...
Giveaway: OmniPod T-Shirts
I've added a new giveaway page to the blog...
current giveaway: OmniPod t-shirts, a lapel pin and a special surprise await the winners!
Head over now and enter to win. Three winners in all. Two people will win two t-shirts and one person will win one. U.S. residents only (sorry shipping is expensive). There are a bunch of ways to stockpile entires to give yourself better odds and even a free entry for doing absolutely nothing.
Good luck!
Judge: Medicare Must Cover CGM for T1D Patient
This article will be referenced in episode 39 of the Juicebox Podcast (to post at midnight 11/23/15). A conversation with Insulet's CCO Shacey Petrovich.
reposted from Medpage Today
by Parker Brown
Staff Writer, MedPage Today
A Medicare provider must cover a continuous blood glucose monitor (CGM) for one of its patients with type 1 diabetes, an administrative law judge has ruled.
The patient, Jill Whitcomb, had recently become eligible for Medicare, which does not cover continuous glucose monitoring devices, provided through United Healthcare of Wisconsin/Secure Horizons. Whitcomb has had type 1 diabetes for more than 35 years, with diabetic neuropathy and a history of hypoglycemia unawareness. A video of Whitcomb having a severe episode of hypoglycemia when she was not using a CGM because she lacked a Certificate of Medical Necessity from the doctor was used as evidence in a trial earlier this year.
United has not yet offered to cover the device and has until Dec. 14 to appeal the decision, said Dan Kraft, Whitcomb's caretaker.
Courts may be forcing CMS' hand for coverage of continuous glucose monitors
George Grunberger, MD, president of the American Academy of Clinical Endocrinologists (AACE), said in an interview with MedPage Today that he has been following this case with interest for several years. The AACE has tried to convince the Centers for Medicare & Medicaid Services to cover CGM for patients with type 1 diabetes who age into Medicare coverage, he added.
"All of our meetings, petitions, and lobbying have met with rejections thus far in spite of uniform recommendations of all relevant professional societies," Grunberger said. "This ruling will hopefully re-energize the efforts to bring 21st century thinking into Medicare decisions. It's all about safety, not just better care for our insulin-requiring patients."
Since the ruling last month, other administrative law judges have cited Whitcomb's case and have ordered that CGMs be covered for the plaintiffs, Kraft said. He provided a document of a recent ruling in which the judge found that the Whitcomb decision was "well reasoned and on point" and that "coverage of a continuous glucose monitor should turn on whether or not the item is medically reasonable and necessary for the beneficiary."
The costs of the monitors and supplies can be substantial: the device alone can cost $400 to $2,000, and the associated consumables can add up to $300 a month. But Medicare considers the device to be "precautionary" and therefore not eligible for coverage.
The court disagreed, ruling that the CGM falls under what Medicare calls a Durable Medical Equipment statutory benefit and is eligible for coverage. The judge also concluded that the device is "medically reasonable and necessary" for Whitcomb, citing evidence by the American Diabetes Association that CGM, "in conjunction with intensive insulin regimen, is a useful tool to lower A1C in adults with type 1 diabetes mellitus, and for those with hypoglycemia unawareness and/or frequent hypoglycemic episodes."
The judge wrote in the final decision that it was clear that Whitcomb was a "brittle diabetic" and that the device is medically reasonable and necessary in her case.
Appealing Medicare decisions is a five-step process. In 2013, an administrative law judge concluded that United must cover the device for Whitcomb, but United filed a request for a review by the Medicare Appeals Council -- the fourth step. That council reversed the decision, according to court documents, and Whitcomb and her attorney filed a complaint in U.S. District Court in November of that year.
But in May 2015, the district court remanded the case to the Secretary of Health and Human Services, saying that the secretary had erred in one of her conclusions. The Medicare Appeals Council vacated its earlier decision and the case was sent to the Office of Medicare Hearings and Appeals, where the latest decision was issued and United was ordered to process Whitcomb's claim.
"As far as moving forward, it will take patients themselves, individually and through patient advocacy groups, to pressure their legislators to change the Medicare coverage language to recognize the tangible benefits this technology represents to their constituents' lives," Grunberger said. "The professional societies have done their part in incorporating the technology into their position statements and guidelines."
Terrorism Meets World Diabetes Day
Yesterday the unthinkable happened. Terrorism was thrust upon Paris France and in an instant hundreds of people were dead or injured in a senseless attack. It is an event that thankfully most of us will never be able to fully grasp but that fact won’t and should’t stop us from trying.
My family was having dinner in a restaurant as the attacks were happening. This restaurant has televisions hanging everywhere, each showing a different sporting event. I asked our waitress if they ever tune one of the televisions to the news and she replied, "sorry, just sports" and then she asked me why I wanted the channel changed. She had no idea, having been at work since the late morning, what was happening in the Paris. When we explained about the terrorist attacks and that they were at this very moment still happening, she appeared unfazed. I was saddened by her response but I understood that she has grown up in a world where this sort of violence is frequent and customary. We continued to get our news through social media and watched the situation worsen by the moment. I began to look around the room and wonder what happening to the world that I grew up in, the world that would stop in moments like this one and reflect - not just until the next story came along but for days and weeks. I don’t believe that humanity should cease to exist every time crazy people infect the world with their insanity, we all need to continue to live our lives. Still, the two thoughts conflict for me and I felt reminiscent for a time where I would have looked up and witnessed a community response to the events happening in the world.
Late last night I cancelled the World Diabetes Day post that was scheduled to run on Arden’s Day today because it contained the words "celebrate" and "happy”. I did so with a measure of sadness as I thought about how much effort the diabetes community puts into raising awareness for type 1 and type 2 diabetes each year. “I can't believe these two days are intersecting", I thought as I placed my head on the pillow only mostly comfortable with my decision to wait until next week to run the content.
Today I woke and witnessed a disagreement online that I must admit that I could never see coming. Passionate supportive people who both completely agree with one another were fighting about how they choose to recognize today and their anger and vitriol was escalating. Their words are what led me to write this piece and to recolor the Jean Jullien art in World Diabetes Day blue.
I witnessed people online devastated by terrorism this morning and as in most situations where you are ultimately powerless but determined to make a difference, we do what we can to show our support. Many people applied overlays to their social media avatars using the colors of the French flag. Not just beautiful to see as your timeline streams but spiritually helpful as you struggle to make sense of what happened yesterday. This is a simple act in social media that we can all agree is called for on a day like today. A small yet powerful message that says that while I may be unable to act personally, I feel on a global level as a human being. This act when aggregated truly makes a difference. A small gesture that joins with other small gestures to create a huge and meaningful statement. Somewhat ironically, this is exactly the impact that we hope our diabetes advocacy will bring.
Je suis Paris
Then I saw the people who live each day with type 1 and type 2 diabetes, people who have put all that they are into preparing for World Diabetes Day. These people are also deeply touched by Paris yet can't shake the feeling that today was their chance to say to the world, “please take a moment to understand what life with diabetes brings to the people who are affected”. It was our day to beg the world…
- Please stop using diabetes as the punchline for your jokes.
- Please understand that insulin keeps me alive while simultaneously trying to kill me.
- Please hear how sad, drained and beaten I am even though I won’t show you.
- Please FDA, stop thinking of continuous glucose monitors as a luxury.
- Please insurance, cover my drugs and supplies.
- Please someone take this day and focus for a moment on the world wide tragedy that my family happens to be trapped in, through no fault of their own.
Therein lies the the problem today. Diabetes is a world wide tragedy but you just can’t say those words in the face of another world wide tragedy like the one that occurred in Paris yesterday. You just can’t and you probably should’t. Yet I wonder in the same breath how do we shut down the desire to take the opportunity? How can we sit on our hands when this was to be the day people were going to be open to listening, to acting? How do you do that when you need a cure so badly that you want to cry almost all of the time? How do you do that when it is your child, mother, husband and friend that you are banging this drum for? How did terrorism effect diabetes advocacy and cause great people all who live with this chronic illness to turn on one another on the very day that was set aside for them to unite. All we wanted to do today was speak, to reach others and say please see diabetes for what it is and help if you can. Understand if you can’t help. Advocate for me and please spread this message beyond those who already understand it far too well. Today feels like the day that it is possible to reach a person who would make a diabetes joke offhandedly and help them to understand just how egregiously they misunderstand a life with diabetes.
You may believe that it is in bad taste to say Happy World Diabetes Day to someone today, you may not. You may wish that your friend’s avatars were blue yet understand that they are adorned in the colors of the French flag. Perhaps you are feeling like your opportunity has been stolen and at the same time know that it is inappropriate to make that statement when people’s lives have been stolen. What all of of this means is that two unthinkable tragedies have met and the honest truth is that they are both terrible. Trying to judge one against the other is a futile act. You can try to make an argument for one side or the other but really, what would that accomplish besides diminishing something that you don’t want to diminish. The only real answer today is to live and let live, which if you think about is a thought that would have saved not just the people of France but everyone who has ever been touched by violence. The best thing to do today is act as you wish the world would, with peace, understanding and humanity for all. Live and let live because judgement always leads to a ruling and we don’t need to be ruled - not on this day or any other.
Scott
