My story about Medicare and CGM

Diabetes Advocacy Public Advocacy
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When I read a comment that linked to a blog posted by @Laddie about her advocacy of continuous glucose monitor (CGM) coverage for Medicare eligible people with diabetes, I wanted to add my story to the mix.

@Laddie referred me to Nicholas Borselli of the firm HCM Strategists to tell my story in an effective way for public policy makers. Nicholas sent me a list of questions for me to answer about my experience with diabetes and the CGM. He took that rough draft and edited a story that could be used to influence legislators. I used his edited draft to further refine my writing and then I sent the story back to him.

He sent me an email recently to tell me:

We will now use the story (attached) for outreach when we visit Congressional offices.

Here is the story of what the CGM means to my life:

Terry’s Story
San Francisco, CA

I was diagnosed with type 1 diabetes in 1984 when I was 30 years old. I currently use a continuous glucose monitor (CGM) and insulin pump to manage my diabetes. The CGM system contributes many positive changes that improve my quality of life.

Three years after my diagnosis, I started on an insulin pump so that I could better match my lifestyle to my insulin needs, in hope of finding some predictability in life with diabetes. But since matching insulin to food and exercise using current tools is never a precise science, I realized that even keeping the same routine day after day would not insure steady, in-range blood glucose. This meant accepting a way of life vulnerable to risky and sometimes scary realities.

For instance, I learned to live with frequent hypoglycemia (low blood sugar). I have been transported to the emergency room twice with severe hypoglycemia, once from the scene of a car accident when I crashed my car into the back of a city bus at 40 miles per hour. I am thankful every day that I fastened my seat belt and no one else was hurt.

I live alone and endured extensive periods when I lost my ability to notice the symptoms of low blood sugar. Without someone else in the house, I live without a critical layer of protection.

But in September of 2009, my life improved. That’s when I started using a CGM. It allows me to keep my glucose in my target range for a high percentage of each day. It also allows me to reduce the rapid blood glucose swings common to most people that use insulin. That normal blood sugar range provides a higher quality of life with plenty of energy. Normal blood glucose also contributes to my emotional health. Did you know that people with diabetes are twice as likely to suffer from depression? It does, and thanks to my CGM, my tighter control rewards me with a greater sense of well being.

I call diabetes the “Goldilocks disease,” because good control means avoiding both low and high blood glucose. There is an endless list of other things that impact the blood glucose metabolism, including illness, stress, aging, seasonal changes, weather, travel, weight changes, and liver inconsistencies. Did you know that in addition to food digestion, the liver also releases glucose into the blood-stream and does so according to its own circadian rhythm? And that rhythm can change from day to day.

Which brings me to an important point: a healthy pancreas releases insulin right into the digestive system such that it goes to work in seconds and finishes in a matter of minutes. We people with diabetes, however, inject insulin into a fat layer just below the skin and that insulin doesn’t peak for 90 minutes and continues working for five hours or more. We make our best guess at how much we need and hope we’re right. To be safe we must watch our blood sugar like a hawk. This is where the CGM shines. It gives us a blood glucose report every five minutes. If things veer metabolically off-track, the CGM enables effective and timely counteractions. Without the CGM, we don’t know our blood sugar status until the next finger-stick glucose check, which may be hours later. For me, living without a CGM is like trying to drive a car with my eyes closed for 57 seconds of every minute.

I can only hope that once decision makers hear my story and the others like me that they will see the critical need to cover this life-saving technology. Right now, over 90 percent of private insurance companies cover CGMs. Why not Medicare? It is time for Congress to step up and change this policy, so that people over the age of 65 may gain access to this life-saving and vital technology.

I hope that my story can help move Medicare coverage of CGM technology. For me this is especially important as CGM tech plays a critical role in the various Artificial Pancreas Projects (APP) moving toward implementation in the next few years.

As I age I realize that my most precious resource in managing my diabetes is my knowledge and cognitive ability. If my cognitive abilities fade, I could easily see myself becoming a victim of a bureaucratic health care system that accepts marginal blood glucose control as “good enough.” The access of any future APP depends on the access that seniors have to CGM technology, the crucial building block of the APP.

We need to fight for Medicare CGM access now! CGMs not only improve quality of life but actually saves lives!

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Very well told. I hope Medicare gets the message soon.

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now i am putting on my proofreading hat, which can be somewhat annoying to people who do not have this tendency…I would change ‘it does’ to ‘they do’.

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i like this powerful image- it conveys a feeling a danger and trying to avoid a fatal accident at the last minute. i also like the explanation that proceeded this image. i think i would have moved this paragraph up to the front. i would have also put the part about your accident and ER visits right after the image of driving a car blind as proof that you were not exaggerating.

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excellent, powerful point.

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knowing that my cognitive abilities have already faded somewhat- for whatever reason- is part of what motivates me to learn all i can even though i have never officially been diagnosed with diabetes. the other part that motivates me is just a love of science.

thank you for participating in diabetes advocacy, terry. i think we also need a kind of broader push for health care reform that would bring costs down across the board. i am not up on health care policy and only know a little bit about topics like the single payer system. i always hear that costs in other countries are cheaper for medicines because they don’t pay for costs for research and development that we do in the US. so if we in the US refuse to pay for those costs, will the drug companies just stop their research and development? or will they pass the costs more evenly to other countries? anyway, the broader challenge of healthcare reform is something that i think organizations involved with diabetes advocacy should involve members in. ultimately what really gets legislators listening is when they know many active voters are paying attention to what they are doing. i hope the new head of tudiabetes Gene Kunde can have this as one of his goals for this organization.

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Thank you for your edit suggestions. I agree with them. I would have made them if suggested when I was editing. I’ve learned in the writing process that there comes a time to close the door on editing and publish. Otherwise you can fall prey to over-editing and never publishing.

I agree with you that it costs Americans more for their health care. In fact it cost more per capita than every other country in the world. I don’t agree that it’s the research costs alone that drive US costs higher. The biggest difference between our health care system and other industrialized countries is the profit component of the insurance companies including the fat paychecks and bonuses of senior management. Medicare’s overhead is something on the order of 3% while the typical health insurance company is 30% or more.

You’re right. Diabetes advocacy is a good topic for TuD members and I hope, under new leadership, that this will continue to be emphasized. Thank-you again for your interest in this topic!

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Terry, I cannot thank you enough for this eloquent piece of advocacy! Denying those over 65 coverage for CGM technology is one step away from denying them insulin…

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You’re welcome, @rgcainmd. Thank you for your comment. We all have a stake in this outcome. Young people will (hopefully) become Medicare age someday. And private insurance does take a cue from Medicare.

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I actually think it would be “they are.”

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Thank you for your suggested edit. It’s already been published.

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that’s the correct use of the aux verb short answer, but i still can’t help but feel that ‘they do’, as in ‘they do suffer like that’ has a better feel within the context of the whole gestalt and tone of the preceding sentiments as expressed by the writer who has already taken pains to inform that the submit button has already been engaged. just kidding !!!

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Sadly, it’s not Medicare who needs to get the message, it is Congress who needs to get the message.

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Great letter, @Terry4, and thanks for contributing your voice to this advocacy effort. I don’t know whether our voices will make a difference, but if we don’t speak up, who will?

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Thanks, @Laddie. Your letter inspired mine.

You’re right, @YogaO. We need to aim our efforts at Congress. Medicare is simply an administrative agency and will do as Congress directs.

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Progress has been steady from March, 2015, through year end. The Medicare CGM Access Act of 2015 consists of two identical pieces of proposed legislation in the 114th Congress. The House bill, H.R. 1427, has 177 co-sponsors or 40.7% of the 435 members of Congress. The Senate Bill, S. 804, has 36 co-sponsors out of 100 senators or 36%. More bipartisan co-sponsors are needed in 2016. JDRF will continue their aggressive advocacy effort in 2016. The JDRF (jdrf.org) website has an easy to use means of contacting your senators and representative. We need to get well above 50% for sponsorship in order for these bills to move forward to committee hearings and votes on the floor of each House of Congress. Please contact your two senators and one representative in Congress and ask for their support. If they have already signed on thank them and ask that they do what they can to get a committee hearing scheduled.

Jerry Smith

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