Yes, you. I’m talking to you with the diabetes.*
Wanted to give you a quick update on what’s going on with The Diabetes UnConference. (And if you don’t know what it is… please go to www.DiabetesUnConference.com and learn about the first multi-day peer-to-peer idea exchange for ALL adults with diabetes (Type 1, Type 2, Type I want to talk about my diabetes…) being held at the Flamingo Las Vegas from March 13 - 15, 2015.
Room Block Deadline: February 12, 2020
The super-duper low room rate at The Flamingo Las Vegas, where the conference is being held, is only available until February 12, 2020. (This means you can count the days left on two hands if you have all ten fingers. If you don’t, well… borrow.)
After that, they release the room block to the hoards of basketball fans who will descend on Las Vegas for March Madness. (We root for Team Diabetes UnConference. We are undefeated.)
Don’t get caught paying a stupidly high rate for a room that you can get for a song (if that song costs $69.00+applicable tax and fees) through The Diabetes UnConference room block. Check out the information about The Flamingo Las Vegas here. And book your room here.
Attendee Registration Deadline: March 1, 2020
Even if you aren’t planning on staying at the hotel, please register by March 1st. We won’t be able to accommodate walk-ups, as head counts must be given to catering and for the incredible Dexcom sponsored High Roller event. I would hate for anyone to not be able to participate because they waited until the last minute. I can’t “squeeze you in”. Don’t miss out.
Why Should You Come To The Diabetes UnConference?
You can learn why I think you should come. Watch this interview where I make a lot of funny faces and answer questions (thank to TuDiabetes for the hilarious chat!):
Of course, you don’t have to take my word for it. Take their words:
- DiabetesMine’s words
- A Sweet Life’s words
- Kerri Sparling of Six Until Me’s words
- Stephen of Happy-Medium’s words
- Rhonda of Fifteen Wait Fifteen’s words
- Diabetes Daily’s words
- Heather of Unexpected Blues’ words
- Kelly of Diabetesaliciousness’ Words
We want you to be there. We want you to feel like you can talk openly about diabetes without judgment and learn from others. We want you to join us for the crazy, zany, beautiful things that will happen.
Don’t miss out. We don’t want to miss you.
*And you with the desire to help those with diabetes. We love you, too. While you can’t join us this year, you can help spread the word. Don’t worry… we have plans for you to come next year!
I cannot imagine my life without my daughter.
I cannot imagine my life without the insulin that keeps me alive so that I can hear her laughter.
And yet… there are children in the world who do not have access to the insulin that will keep them alive.
In parts of the world (some closer to the U.S. than you think), there is a problem getting insulin to children.
Lack of access to insulin remains the most common cause of death in a child with diabetes (Gale, 2006). The estimated life expectancy of a child who has just developed diabetes could be less than a year in some areas (Beran et al, 2005). Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood. – IDF
We know that insulin is expensive in the United States, but for some families in the world, the cost of insulin is more than a family will make in an entire year. And you know what can change that?
For the past few years, the Spare A Rose, Save A Child online campaign has helped to raise funds for the International Diabetes Federation (IDF)’s Life for a Child campaign.
Life for a Child began over a decade ago and gives donor funds directly to diabetes centers around the world, getting children insulin, test strip supplies, and care to help these children live… and laugh.
How Can You Help?
Valentine’s Day is coming.
Flowers are pretty. Chocolates are nice. Perfume smells lovely (Sometimes.)
But flowers wither. Chocolates get eaten. Perfume wafts away into the air.
You deserve more than that.
The cost of a single rose. Or a very expensive piece of chocolate. Or a few spritzes of perfume. (Or even that teddy bear that gets purchased at the gas station on the way home.) Five dollars gives a child with diabetes in an underdeveloped country a month of life.
Let those who love you know that you’ll take one less rose. One less piece of chocolate. Skip the spritz. You want them to give five dollars (or more) to the Spare A Rose, Save A Child campaign.
You can have them donate once or… they can remind you that you are loved throughout the year with a monthly gift to the program. You get a sweet acknowledgment and the knowledge that you are helping people all over the world hear a child laugh.
Want to get your office in on the action? Done. Easy-peasy-give-insulin-to-kids-squeezy.
Your donation is tax-deductible. (So, for those of you who are romantic AND financially savvy… you can say I love you and write it off. It’s still sexy.)
What About People YOU Love?
You love them more than life itself.
Click here to give life for a child.
My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think
every woman every person should know how to do that.)
I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.
I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.
Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)
Now re-read those first two paragraphs.
I Don’t Expect You To Know…
I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.
All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?
“What do you mean the ER nurse didn’t know what a CGM is?”
“The optometrist asked you what your blood sugar was this morning?”
“The doctor wanted to take your insulin pump off in the hospital?”
“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”
“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”
We are the experts…
We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?
This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)
When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them.
“The ER nurse didn’t know what a CGM is?”
Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.
“The optometrist asked you what your blood sugar was this morning?”
Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)
“The doctor wanted to take off your insulin pump in the hospital?”
If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.
(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)
When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.
We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.
We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?
Sounds crazy, right?
Let’s be crazy.
Better drugs and devices mean better treatments.
Better treatments mean longer, healthier lives.
Longer, healthier lives means more time with the people you love.
Clinical trials = love.
Clinicaltrials.gov is the first place to look to see if there is a clinical trial you can participate in that happens to be in your area.
Want a little nudge?
Click on this link for all open clinical trials in the United States with “diabetes” as the keyword.
Click on this link for all open clinical trials in the United States with “Type 1 diabetes” as the keyword. (There are currently 428 studies available.)
You can modify your search and pick your state (heck, if you are out of the U.S., there are still studies you can do). Some areas have more opportunities than others, but this is your chance to get involved and help all people with diabetes. I’ve done clinical trials and am always on the lookout to do more. Why?
Clinical trials = love.
Our very good friends have a child with cancer. This child was being treated with high-dose chemotherapy and developed a life-threatening liver issue. The only treatment that gave them an option was through a clinical trial. That clinical trial saved his life. In participating in the trial, his results will help pave the way for better treatment options for others. He didn’t have a choice (thankfully the clinical trial was available), but we have a choice right now to help others.
Clinicaltrials.gov is a crappy website. Yep. There. I said it. It’s not user-friendly, but it does provide you with all of the information you need. And you can look at it anytime because they’re constantly updating it. For ALL disease states, not just diabetes.
Want to Participate?
Once you’ve found a study that you might want to participate in, you’ll need to check the “inclusion criteria,” which will tell you whether you not you’re a candidate. Some are specifically by age range, some may exclude those who have had illnesses, and others must have individuals in a certain weight range or HbA1C range. If you meet the criteria, you can contact the study coordinator and get more information.
Some trials will provide not only the medication or device during the trial, but medical team appointments and travel/monetary compensation. You can be altruistic AND help yourself at the same time!
If you see your medical team at a research center, ask them if there are any clinical studies that you can participate in. (You never know!)
Also, if you happen to be in the Chicago area and meet the criteria, here’s something that you can do to help…
Research Study for Young Adults with Type 1 Diabetes at University of Illinois Chicago
If you are 18 to 30 years old with Type 1 Diabetes, using an insulin pump, not working Evening, Night or Rotating Shifts and willing to participate in a research study then you may be able to help!
Research activities will include: 1 hour visit for health history and physical, wearing monitors to measure activity & glucose and an overnight sleep study.
Research Related activities will occur at: UIC College of Nursing (845 South Damen Street, Chicago, IL 60612) and UIC Sleep Science Center (2242 West Harrison Street, Suite 104, Chicago, IL 60612)
Participants will be compensated for time and travel.
My tolerance for ineptitude is miniscule. I wouldn’t consider it a character flaw. (It’s inherited. Genetic. My father has the same tolerance level.) I’m all for giving people breaks if they are new to a position or might be having a bad day, but if the inability to fix a problem for a client is written (in invisible ink) into a company’s mission, there’s a serious issue.
Insurance companies have a lot of serious issues. I paint insurance companies with a broad brush because while there is always an exception to the rule, I have yet to turn to someone after getting off the phone and say:
“Wow. They’re the best insurance company ever. I’ll be a loyal customer until I die!”
Because they don’t want you to be a loyal customer. They want you to leave when you start to have complications or get serious illnesses. They all hope you’ll be another company’s problem by the time that happens.
You’re technically not even a customer; you’re a subscriber. (Unlike a newsletter or a magazine subscription, you’re not subscribing voluntarily.) You’ve “chosen”” ::cough cough:: a particular insurance company, but really it’s your employer in most cases that does it for you.
Side note: Most employers don’t care about the fantastic experience you’d get from the insurance call center or if you have to jump through rings of fire for durable medical equipment. They want to check a box for the government under ACA (although some companies are happily paying the fine) or add “we offer a medical plan” to potential job prospects. (I think all job descriptions should include a URL to the medical plan they offer, but that’s just me being efficient.)
Insurance companies are not altruistic. They are not charities. They are not there to help you. They are businesses. Businesses that have profit margins and bottom lines and investors. For years, they did everything possible to avoid having chronically ill individuals on their plans. These days, they can’t avoid us. We’re here.
But they are not making it easy for anyone these days to get answers. Or help. They think we’re just going to eventually give up.
My latest foray into the seventh circle of hell (which is reserved for insurance companies) had nothing to do with diabetes (except that it was fun to watch the Dexcom graph rise while I was on hold and seething…), but it did prove to me that sometimes, you have to say that you’re just not going to take it.
The Never Ending Story
I had COBRA for two months while John switched to a new position, waiting for his company’s healthcare plan to kick in. I had a Continuation of Coverage certificate, showing the dates of COBRA coverage. COBRA was through the same company as the healthcare insurance company, just a different department. And that’s there the problem started.
COBRA had put in the wrong date (off by one day) for the end of my coverage. Of course, I had two doctor appointments and lab work on that last day, so the bills came in from the providers. I called the insurance company.
Them: “You had no coverage on that date of service.”
Me: “I have a Continuation of Coverage certificate from your company showing that I did. I’m happy to fax it over to you.”
Them: “We can’t receive faxes. You need to contact COBRA and have them change the date. Then you can call us back and have the three claims reprocessed.”
I called the COBRA department. It was a “data error” and they would update my file to show the correct date.
Them: “It should take just a few business days for the correct data to be updated throughout the system.”
It took five months and over 11 hours on hold/discussing/explaining over and over/cajoling/pleading with both the COBRA department and the insurance company (They are the same company. I can’t stress this enough.) and the date finally got straightened out.
I was told it was fixed by COBRA and that it was the insurance company’s fault for not updating. That excuse was used twice, but then a third person admitted that they hadn’t submit the data change after three weeks and two phone calls. I was told that there was no single point of contact for either company to handle the escalated (by now) issue. I was told that they couldn’t make any outgoing calls and that I couldn’t get a phone number to call anyone. An email? ::insert evil laugh:: Silly woman.
I thought it was fixed. I was told it was fixed. After five months, it was over. Hot damn and hallelujah.
I received a dunning letter from a provider, threatening collection and damage to my credit. Originally, the claim was paid. The insurance company’s “claims recovery” department has asked for the payment back and was not releasing the request, despite the correction of the date. Could I talk with anyone there in the claims recovery department? No. Could I send documentation showing the coverage date? No.
Could I pay the bill to the provider? Yes.
I thought about it. Thought about how I was exhausted, fighting against a company I paid a lot of money to receive benefits that weren’t being given. I was tired of the tinny on-hold music that became the soundtrack of my days. And then I decided I wasn’t going to take it. At this point, I had clocked over 13 hours on this mistake that was not my fault.
Filing A Formal Complaint With The State
I filed a formal complaint against the insurance company with my state. Uploaded my documentation and did it online. I used the word “ineptitude”.
On December 23, almost eight months after the date of service, I got a phone call from a “member advocate” of the insurance company. He was “calling to help me resolve the issue”. He admitted that he was calling because I had filed the complaint with the state. Can you imagine what would have happened if I hadn’t formally complained to the state?
Those of us with diabetes understand that we have to work with constricted formularies, certain types of pumps and meters, get letters of medical necessity and write appeals.
We can choose to wait on hold while Mozart Muzak drones off-key or we can say that we’re not going to take it anymore.
If You’re Having a Problem With Your Health Insurance Company
If you’re having an issue with your insurance company not paying claims for services, not providing documentation for denials or appeals, here are my recommendations:
- Document everything. Hint: Get a notebook just for insurance calls.
- When the representative comes on the line, ask for their name and identifying ID. Write it down along with the time and date of the call (and even the length of time the call took, if it tickles your fancy).
- Be respectful towards the representative, who isn’t the individual deciding on your claim status or your appeal or denial.
- Have your claims documentation at the ready, because they’ll always ask for information.
- If you’ve got an issue that’s been going on for a while, allow the representative to take a moment or two to re-read the notes. This will save your breath.
- Ask for an escalation if you’re not getting anywhere. There are “escalated claims specialists” that will magically appear on the line who can give you (at the end of the call) a different number to reference as part of the escalation.
- Give them time to work the issue, but hold them to the timetable. Some issues are complex, but others should be resolved quickly.
- Know that each state has an Insurance Commissioner (and department) who is tasked with protecting consumers. Use them if you’re not getting a resolution after 30 days or if you are not satisfied with the appeal decision. Here’s a list of all the state Insurance Commissioners for reference.
- If you have an issue with a provider being paid properly, work with the provider. (They all have resources and recourse against the insurance company, so two heads are better than one.)
As of today, my issue still isn’t resolved. Why? (For those of you playing at home: these people all work for the same company. Just different departments.) The member advocate gave me this excuse:
“I can’t get in touch with anyone in the claims recovery department. I’ve called a few times. I’m trying to make sure they have all the documentation they need so they can stop the request for the refund.”
It’s his turn to sit on hold for a while. I’m not going to take it anymore.