hope

The Case for CGM

It can be extremely difficult to get an insurance company to cover the costs of continuous glucose monitoring (CGM) systems. The excuses that these holdout insurance companies provide as to why they don’t want to cover CGM are becoming less justifiable thanks to research and advancements in the way we think about the needs of people living with diabetes. This is why I am a Diabetes Advocate.

So far in 2014, I have only been able to get four Dexcom continuous glucose monitor sensors out of my health insurance company. Four sensors is a one month supply. It is now July. That means for five months out of this year (so far) I have not been able to wear my CGM or benefit from the data that it gives me and the alarms that it uses to tell me when my blood sugar is dropping too low or rising too high. Each time I try to get more CGM sensors, I have to restart the approval process with my insurance company, spend weeks going back and forth between Dexcom, my endo, and insurance trying to get all of the documentation together to submit for approval, just to be denied because either Dexcom isn’t a preferred provider, or because the insurance company has decided that there isn’t enough evidence to support that CGM is a benefit and results in better control of diabetes. So then I appeal. And I know there are many, many other people struggling with getting CGM coverage by their health insurance just like I am.

This is also why I am a medical librarian. Challenge accepted, health insurance industry. Bring it on.

The most dangerous side effect of insulin is hypoglycemia, or risk of dangerous low blood sugars. The ability of CGM systems to alarm and notify a person with diabetes is one of the most valuable and beneficial advances in diabetes technology ever. EVER. The fact that there are small devices now that can warn us, as if to say, “Hey dude, your blood sugar is dropping. It might be a good idea to get a snack or something,” is incredible. This is an incredible benefit to people with diabetes so that they don’t get in a dangerous situation with a low blood sugar that can leave them incapacitated, unconscious, or possibly even dead if it happens in the middle of the night while they are asleep. Do you know how health insurance companies make money off of a dead person with diabetes? They don’t.

CGM technology benefits insurance companies too. It is incredibly cheaper to provide the technology that will alarm and cue someone to get a sandwich, a juice box, or a Level gel to get their blood sugar up on an ongoing basis than it is to pay for home or work visits by paramedics, rides in the back of an ambulance, hours in an emergency room, and likely overnight stays in the hospital depending on the severity of the lows. A low blood sugar can happen at any time, and is usually unpredictable based on varying amounts of food, activity, stress, varying absorption rates of body tissue from one spot to the next, and any other factor in life that can cause any amount of change. Sometimes they happen for seemingly no reason at all, and therein lies the danger.

How about…

…a systematic review from 2012 that concludes, “There are indications that higher compliance of wearing the CGM device improves glycosylated haemoglobin A1c level (HbA1c) to a larger extent.”

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008101.pub2/abstract

…the research that concludes, “CGM with intensive insulin therapy appears to be cost-effective relative to SMBG [self-monitoring of blood glucose] and other societal health interventions.”

http://www.ncbi.nlm.nih.gov/pubmed/21917132

…the research that finds that regardless of prescription approach, “…patient-led and physician-driven prescription. Both modes of using CGM provide similar long-term metabolic improvement.”

http://www.ncbi.nlm.nih.gov/pubmed/22208716

…the one with early analysis of cost-effectiveness of CGM that says…well, I’ll just let is speak for itself. “…the overall quality-of-life effect of CGM arises from its ability to both improve the immediate quality of life of diabetic patients as well as reduce future complications through enhanced glycemic management.” But wait, there’s more! “The provision of greater glucose control data may have improved the quality of life of patients by facilitating decisions related to food intake and insulin regimens as well as by reducing the risks and fears of hypoglycemia.”

http://www.ncbi.nlm.nih.gov/pubmed/20332354

…real-world benefits of CGM. “Personal CGM, in a real-world setting, improves glucose control and reduces the rate of severe hypoglycemic episodes.”

http://www.ncbi.nlm.nih.gov/pubmed/20551007

This is only a start. There is more research out there, and more research on the way that shows the benefits of CGM on the lives of people who use insulin to manage their diabetes. It is time for health insurance companies to get with the program, and it is time for us to speak up and shout from the rooftops what we need, and make it happen. Some health insurance companies are better than others (PPOs tend to be more willing to cover CGM than HMOs, for example). Until coverage of CGM is non-negotiable, our work as advocates for our own health and well-being is not done. We should not have to beg and plead to get this widely accepted diabetes technology that has already been and continues to be proven to improve and save lives. Coverage of CGM should be non-negotiable, expected, and mandatory.

Now that we are staring down the barrel of the potential for the bionic pancreas in a few more years, the need for CGM acceptance by insurance companies is only going to grow. Without insurance companies accepting that CGM is indeed a good idea for people with diabetes, and without insurance companies making CGM technology accessible without the barriers and complicated processes of getting approval, and without more research documenting the cost benefits and effectiveness of CGM versus emergency responses to hypoglycemic episodes (low BGs), the bionic pancreas will never make it past the prototype phase. And we need this forthcoming technology that the bionic pancreas, and the research behind it, provides.

I’m tired. I’m so very tired. I’m tired of living every single day and running every decision that I make through a diabetes filter. I’m tired of having to prick my finger before I leave for work in the morning to make sure that my blood sugar level is okay for me to be able to drive. I’m tired of checking before meetings to make sure that my blood sugar isn’t dropping, for no other reason than so that I don’t get caught in the middle of a meeting not making sense because my blood sugar dropped too low. I’m tired of having to check before I put any bite of food in my mouth, and then having to check an hour or two after to see if that food and the insulin that I took to cover it worked the way that I thought it would. Sometimes it does, and sometimes it doesn’t. Most of the time it defies explanation. I’m tired of having to decide if I get to go to the gym and workout today based on what my blood sugar is right before I go. I’m tired of having to check so that I can drive home. I’m tired of having to check before I can go to bed. I’m tired of not being able to go to bed because I did check, and having to wait for my blood sugar to go up or come down.

I’m tired. I’m tired of the hassle. I’m tired of the bullshit. I use that word because that is just how tired of it I am. I don’t have pipedreams of a cure for diabetes. I’ve had diabetes for 33 years. It’s all I know, and all I have ever had to deal with, and I don’t walk around with imaginary hope that a cure is coming in five years, ten years, or even necessarily in my lifetime. I hope it does. Maybe it will, but short of a scientific breakthrough, I don’t feel like that is the best place for me to invest my energy. In this age of technological advancements, this age full of the smartest people that have ever lived on this planet, and this age where people are open to change and progress and opportunity, I want to be able to rest my mind when it comes to diabetes. Let’s work together to support things like the bionic pancreas, CGM coverage by insurance companies, and these things that simply make life with diabetes easier and better.

I don’t feel like making life easier with diabetes is really asking too much. If you think it is, then you try it. See if you can make it 33 years counting fingerpricks, carbohydrates, activity levels, insulin doses, times you’ve found yourself in a room waking up and not knowing where you are because of a severe low blood sugar, a tongue chewed up from a low blood sugar seizure, bruises that you don’t know how you got, and cracked ribs from the physical exertion of just trying to survive that low. Survive that, and then I dare you to tell me how CGM isn’t effective and isn’t necessary.

I double arrows down dare you.

CGM Double Down Arrows

Update, 7/30/2014:
I am so fortunate to have received a few sensors from other PWD who had the extras to spare. Thank you! You know who you are, and you have been a big help (he types, as he is recovering from a BG of 39 and still a little shaky). I received a call from Dexcom this afternoon, confirming that they finally got all of the pieces that they needed with insurance approval and documentation from my endo, and they are overnighting me new sensors. Yay! It took 7 months, which is ridiculous, but people with diabetes are experts at being stubborn and steadfast until we get what we need (*cough* bionic pancreas *cough* encapsulation *cough* smart insulin). So thankful that it appears to have finally been worked out. Ciao for now! (Did I really just type “Ciao for now!”? I must still be low…)

Update, 8/21/2014:
Order got delayed, again, before it could be shipped to me. Today I finally received a 90-day supply of Dexcom sensors, allegedly with auto-renew when I need more. Still not clear on what took so long, aside from the explanation from my Dexcom rep that it was dramatically delayed by all of the authorizations required in order for insurance to approve. I’d demand more of an explanation, but it’s been a long battle, and I’m tired. Glad to finally have CGM data again, even if it did take 8 months longer than it should have.

Briar Patch

I’m not perfect. There, I said it.

The past few days have been a rollercoaster of educational opportunities and lessons learned for me. It’s as if I’m stuck in the Robert Frost poem about two trails diverging in the woods, and I’m constantly finding myself on the one that is less traveled.

Of course, the road less traveled is the one that is supposed to make all the difference. That whole “thrive through adversity” thing, I guess. If I’m being honest though, it’s exhausting always traveling that path. Sometimes I’d like to just travel the well worn option, where I can proceed without so much resistance.

I remember my mom telling me when I was growing up that when you’re stressed out and upset, you have to find your stressors, and get rid of them. That sounds so easy, but in reality, there are a lot of stressors that we have no control over. Sometimes, it doesn’t matter what you do, it’s never going to be perfect, right, or appropriate for everybody.

That is exactly where I’m at right now. From nasty emails that completely blow non-issues out of proportion, to trying to lead a group of people with shifting priorities in all directions, to dealing with supposed professionals behaving unprofessionally, I feel like I’m traveling down a path that more closely resembles a briar patch than it does a simple path less traveled.

It’s hard not to internalize times like these, especially when there are conflicting reports about whether or not you are doing a good job. It’s hard not to take it personal. Sometimes I just need someone to say, “Martin, I know this is hard, and I know you feel like the world is against you because of these few small things, but you’re good enough, you’re smart enough, and gosh darn it, people like you.” Preferably in the Stuart Smalley voice. Short of that, I’d settle for someone that knows just telling me that I’m doing the right thing, because sometimes I’m just doing the best I can and hoping that is good enough.

I guess this is the part that I could link to diabetes. Fortunately, and thankfully, it’s not my diabetes that is giving me the hardest time right now. I’m waiting on new test strips to get approved by my insurance company and arrive, sure. I need to order pump supplies, of course. But really, those things are just another day with the “D.”

I did get to Skype with some amazing Students With Diabetes from Tampa last night, and that was awesome! I love hanging out with people with diabetes (PWDs), even if it is virtually. They certainly reminded me that not all is awful in the world, and even if we get the diabetes blues, PWDs are resilient and forever hopeful.

SWD_02_06_2013

That is what I have to remember right now. There is hope. Better days are just around the corner. You can’t please everybody, and sometimes it really doesn’t matter what you do, some people have made up their minds from the start that they are going to proceed with their panties in a wad or their boxers in a bunch. I just have to be consistent, and stay positive, briar patch or not.

The advice I gave to the Students With Diabetes last night about diabetes blues is that if you can find a way to laugh about it, you can overcome it.

That said, who wants to get me one of these Lionel Richie cheese plates for my birthday on Saturday? Or you could just donate to my Tour de Cure and help me kick diabetes in the teeth. Either way, you da best, and I thank you from the bottom of my busted pancreas.

HelloBrieOR

ADATdC2013

 

Fortune cookie - Depart not from the path which fate has you assigned.

Fortune of Fate

The other day I had a hankering for Chinese take out. Sure, it might not be the healthiest food of all the choices out there, but sometimes you just have to indulge. For the record, I did make three meals out of my dinner order, so at least there is that.

The wonderful thing about Chinese food is that, after you are done, you get to fumble around in the butcher quality brown paper bag that the food arrived in, contorting yourself just so in order to avoid the mangled construction grade staples threatening to open up your house fried rice infused arteries, and find the most magical and sage of all desserts: The fortune cookie.

I like it when my fortune cookie tells me something gratifying, like “We’re renaming soy sauce to awesomesauce in your honor” or “You put the POW in kung pao chicken.”

Sometimes though, my fortune is a real miss…

Fortune cookie - Depart not from the path which fate has you assigned.
Normally when I get a bogus fortune, I just shrug it off and throw it away and don’t think about it. After all, not every fortune cookie is created equal. This one, however, was discovered to be filled with commentary.

The notion that life is on rails, and that the future is set in stone, has never sat well with me. My science mind refuses to accept that all of our paths, as complex and unique as we are, are pre-planned.

Take diabetes for example. As I sit here writing this, there is absolutely no way of knowing what my blood sugar is going to be with certainty at this same time tomorrow. I can guess, and due to my repetitive behaviors when it comes to living with my diabetes, I can make an educated prediction, but that isn’t fate. Fate would say that tomorrow, at exactly 10:07 a.m., I am going to have a low blood sugar and require someone to fling jelly beans in my general direction as if they were feeding an animal at the petting zoo. Fate would say that I am on a path toward that silly spectacle of a low, and the best I can hope for is that the jelly beans are buttered popcorn or watermelon flavored, which is much more desirable than the mothball or earwax Jelly Belly recipes.

The flip side of that coin is that maybe my fate IS to depart from the path that I have been assigned. Maybe the new path is indeed my fate, and the other path was just a ploy to make me think that it was what I was supposed to be doing. Maybe by writing this blog post, I avoid the 10:07 a.m. low and allay my fears of biting into a vomit flavored Jelly Belly in order to survive a sneaky low. If you think about it too hard, you end up flopping around in the floor with a perfect blood sugar and your brain all twisted into the shape of a plate of lo mein.

I guess what the egg drop soup boils down to is that the only fate we have is what we make of the decisions we encounter today. We use our best judgement to make the best decisions that we can, and then we react to the outcomes as they may be. Nothing is guaranteed, good or bad, and nothing is written in stone.

How we are doing with our diabetes today does not in any way dictate our tomorrow. Our choices determine our fate, not the other way around.

Bringing Science Home 1-Year Anniversary

Bringing Science Home

Lately, I’ve been zig-zagging all over the place. One such zig-zag took me to the 1-year anniversary celebration of Bringing Science Home, a joint effort between USF Health and The Patterson Foundation that aims to revolutionize what it means to live well with chronic disease and invisible illness.

Bringing Science Home’s Mission Statement
“To empower people touched by chronic disease to live optimistically and to create a new model for chronic disease education.”

I get to sit through a lot of health and medical presentations, and I get exposed to all sorts of ideas about how to treat patients, and the roles that health professionals play in educating people with chronic illnesses. Sometimes I am moved by what I hear so much that I have to fight the urge to stand up in a chair and applaud; other times I am moved in the opposite direction, and I have to fight the urge to jump up and interrupt the folks who are doing the talking and dole out a bit of education myself.

I can really get behind what Bringing Science Home is doing. Finally, there is a group that is getting organized and making efforts to bridge the gaps in areas of life with chronic illness that our current systems too often neglect.

Imagine you are a young adult in today’s world. You have just graduated high school, and are off to college to pursue the dreams of higher education. The world is your oyster! You get to set your own class schedule now, pursue your own interests, meet new people, join clubs and organizations, go to parties, stay up all night cramming for that big test you have tomorrow, maybe find a job, meet someone that fancies you and start a relationship. The sky is the limit!

If you have diabetes, you also have to make sure that you are doing what you need to do on that front as well, so that you are able to have all of the adventures of a college education. Before, when you were at home, it might have been easier. Your parents may have taken care of making sure you have insulin, diabetes supplies, test strips, and regular visits to your diabetes doctor, eye doctor, dentist, etc. They also probably helped a lot with making sure that you had the proper foods to eat, and that there was always a juice box or something nearby to treat a low blood sugar. Life in college is different: It’s all on you now.

Add those two together, and it is A LOT for a young adult to have to deal with. Keeping up with all of the diabetes stuff, plus all of the college stuff, it’s no wonder that most people with diabetes in college find that their control starts to slip. Enter Students With Diabetes, a group of people whose aim is to create a community and connection point for students with diabetes on college campuses. That’s right, “campuses.” Plural. This is not an initiative restricted to just the University of South Florida where Bringing Science Home lives. At publication of this blog post, Students With Diabetes is on 28 college campuses across the nation, and growing!

How amazing to be able to meet other people, with diabetes, who are going through this incredible transition and learning experience, and not feel like we have to hide our condition! Typically, we learn to hide and suppress our own needs so that we better fit in, whether we’re in college or just in normal day-to-day life. Being shown through our interactions with others that we don’t HAVE to hide is really what living well with diabetes is all about.

Bringing Science Home is heavily focused on life with diabetes, but it is even more about helping people of all ages and with all chronic illnesses get the help and support that they need to thrive. Whether you are Students With Asthma, Students With Diabetes, or at another life stage or have another chronic illness that doesn’t get the support it deserves, I am so very encourage by what Bringing Science Home is doing, and am confident that efforts like this are the future of living well.

Bringing Science Home 1-Year Anniversary

Me and Nicole Johnson, Executive Director of Bringing Science Home

Insulin Vial

A Little Extra

I was having a discussion with a friend recently, and we were toying with the idea of what we would do if we won the lottery. What would we do if all of a sudden we went from our typical paycheck-to-paycheck lives to having more money than we could spend in a single day?

It’s always a fun question to imagine the answer to. Maybe we would be generous, and donate a huge chunk of it to charity. Maybe we would make someone’s dreams come true, and give them what they might not have ever had an opportunity to have without our help. Maybe we would take care of ourselves, our families, our friends, and take a good long vacation somewhere exotic.

Most people I’ve had this conversation with want to believe that winning the lottery wouldn’t change them. I don’t buy it (no pun intended). I think it would absolutely change a person. I know that it would certainly change me.

An old Zen proverb says, “Change is neither good nor bad; it simply is.”

I believe it is our reaction to change that determines if the change is for the better or for the worse. Too often we are so close to our own circumstances that we lack the ability to step back and realize that perhaps the adversity and change that we are doing a faceplant into is exactly what we need to move forward toward a brighter, more positive and productive future.

I hope that my reaction to a change like winning the lottery would be positive. In my imagination, it’s hard to imagine it wouldn’t be positive. It would certainly make it easier to not worry about how I was going to get the money for my next order of pump supplies, or if this vial of insulin will last me until I get my next paycheck when I can afford to order more, or having to choose to skip meals so that the rest of my family can eat. These are the kinds of unfair choices that many people have to make.

Something I admire about this amazing diabetes community, both online and in real life, is that we make efforts to take care of each other. The singular need of one becomes the focus of a community of many, until the need is met with a solution.

I guess after seeing people lose their homes and belongings recently to Hurricane Irene, and having grown up in Florida where hurricanes ravage this state on a near constant basis, and having A-Flizzle who survived the devastation in Louisiana from Hurricane Katrina a few years ago, I feel compelled to encourage you to help out that person next to you, if you can.

Maybe you have a surplus vial of insulin that is going to go out of date before you will be able to use it. Maybe you have extra test strips that you can spare. Maybe you have a few CGM sensors that could help someone troubleshoot their BG’s and get them back on track and in a bit better control. Maybe you have a few minutes to call a friend who you know is overwhelmed and say, “You know what friend, I was just thinking about you. How are you today?”

Find that outlet, and do a little extra. Need help? Contact your local JDRF or ADA chapter, and simply ask.

As Mahatma Gandhi said, “Be the change you want to see in the world.” You can never predict how big of a difference a simple act of kindness can make.

Insulin Vial

Imagine - photo courtesy of Allison Blass

Imagine

Every Thursday night Diabetes Social Media Advocacy Live (DSMA Live) comes online, where various topics relating to diabetes are discussed. Last week, the special guest was Professor Jean Claude Mbanya, President of the International Diabetes Federation (IDF). He spoke about many diabetes advocacy and global diabetes initiatives that are going on worldwide, the most pressing of which include:

  • O is for Outrage
    The topic of the United Nation’s 2nd summit on global health issues is non-communicable diseases (NCDs), of which diabetes is one. Create a postcard right now to send to United States President Barack Obama, and ask him to represent us at the UN Summit on September 19-20, 2011. The IDF is taking care of all of the shipping costs. (P.S. – I don’t care what political affiliation you are or whether or not you approve of President Obama. This isn’t political. This is necessary.)
  • I Agree
    Do this now. Just click the “I Agree” link above. Just by doing that, you are telling the IDF, the UN, and the world that you support essential care for people with diabetes. People should not have to choose between starvation and living life with diabetes. Not anywhere.
  • Life For A Child
    Saving the lives of children in the developing world. As Professor Mbanya said in his time with us on DSMA Life, “No child should die from diabetes.”
  • World Diabetes Day
    November 14 is World Diabetes Day. Wear blue on this day, attend or host an event, and increase awareness of diabetes worldwide.

Something that really jumped out at me was what he shared about the stigma of diabetes, especially in less fortunate countries where oppression, starvation, corruption, overpopulation, and poverty reign.

Professor Mbanya shared with us the story of a man whom he met in a hospital that had four children, one of which was a daughter who had type 1 diabetes. Despite what help he could get from the hospital, the man was always sad and never smiled. One day Professor Mbanya went away on a trip, and when he returned and happen to run into the man, he was happy, and had a smile on his face. Professor Mbanya asked him, “Why are you so happy?” The man answered that his daughter with type 1 diabetes had died. Professor Mbanya, unable to understand why the death of a child would bring a smile to the father’s face, asked, “Then why are you smiling?” The man answered, “Professor, it was better that my daughter should die, so that the rest of the family can live, for when she was alive we couldn’t eat, the other children had to drop out of school, and now I have changed and put on weight because we are able to eat.”

Imagine.

Among some tribal people in the undeveloped world, diabetes is not viewed as a medical condition, or a sickness, or even a disease. It is viewed as a curse. Professor Mbanya explained to us that in those cultures, the family of a child with diabetes is viewed as having the disease as much as the child, where parents take their children and commit suicide or infanticide because of the profound negative stigma of diabetes.

Imagine.

In 1979, Chinese leader Deng Xiaoping enacted the One Child Law for urban areas of China in an effort to control population. The basic premise of the law states that couples are limited to only one child per family. However, if that one child develops type 1 diabetes, then an exemption is allowed so that the parents may essentially try again, because the expectation is that the child with diabetes will die.

Imagine.

Professor Mbanya said it, and I couldn’t agree with him more: “No child should die of diabetes. All children should have adequate access to insulin, monitors, supplies, and education needed to have a happy and quality life.”

Imagine.

Imagine - photo courtesy of Allison Blass

Photo courtesy of Allison Blass

Me and Fireflight

What I’ve Overcome

Fireflight is a band that you’ve probably never heard of, so I hope you’ll humor me for a moment and let me give you an introduction. A Florida-based Christian rock band, Fireflight has put out three albums of music that just connects. After listening to their albums dozens of times, the songs are always the same, but I change, and I can identify with different songs at different times.

Me and Fireflight

Me and Fireflight - February 2010

Now, I realize that some folks read the words “Christian rock band” and have probably already stopped reading this post. That’s okay. The beauty of music is that it appeals to so many and not to everyone, at the same time. I’m diverse in my music preferences, which includes an affinity for metal bands such as Stone Sour, punk bands such as Green Day, pop bands such as Paramore, and even swing and jump blues bands such as Brian Setzer Orchestra.

For those of you still reading, there is a song out by Fireflight right now called “What I’ve Overcome.” This song is about the times when we fall down, and how much stronger we become when we find the strength to pick ourselves back up. It’s also about how much stronger we become when we have faith, and allow ourselves to be picked back up again by something bigger than just us.

The main line of the chorus of the song is, “I’m not what I have done, I’m what I’ve overcome.” We have all had struggles in our past. Many of us are struggling right now. For me, this song serves as a source of encouragement that we can overcome our challenges if we have faith, if we push forward, and if we can somehow find a way to use our past to fuel our future. In my world, that applies to a lot more than just diabetes. Maybe that fuel is finding faith in God. Maybe that fuel is accepting the things that we cannot change. Maybe that fuel is exactly what the lyrics of the song say, that we find grace, and healing.

Whatever it is that enables us to heal and move forward and overcome the ugly things in this world, I know that it is powerful, and I know that sometimes when I feel helpless, the only solution that works for me is to simply let go…and trust. When the chains that are holding us down are broken, and we rise up, that is when we are no longer defined by what holds us back, but rather by what holds us upright.