I plan to grow old someday.
Sure, "old" is a state of mind -- but I'm talking Medicare age.
Assuming I make it into my mid-60s and beyond, and the American healthcare system is still setup the same way three decades from now, I hope things are better than they are now when it comes to coverage of diabetes supplies. Actually, I pray it hasn't deteriorated by then with regard to access to the D-devices I rely on to keep me safe and healthy -- especially my CGM (continuous glucose monitor), that helps me spot low blood sugars that could incapacitate me during the day or overnight with disastrous consequences.
I'm pretty scared about future coverage, based on trends we're seeing now: dangerously inadequate coverage that looks to be getting worse, not better, despite the so-called "ePatient Revolution."
Ironically, even as the American Diabetes Association continues urging national leaders to be aware of the $245 billion spent on diabetes each year, it seems that with each new federal government agency decision we are just kicking the can down the road and hiking up costs even more.
NEWSFLASH: FDA Clears Dexcom Share Direct
Dexcom gets regulatory approval of its 'on-the-go' mobile apps for CGM data-sharing.
State of the Union: It's Time to Cure Diabetes
President launching new precision medicine initiative to better treat, cure diseases like diabetes.
'Robotic Pancreas' Appears On American Idol
Carlos Santana's nephew Adam Lasher shows off Dexcom G4 during live performance.
That is, the Centers for Medicare Services (CMS) is taking an ever-narrower view of what it dubs "necessary" for people with diabetes. The result is a lack of coverage for good quality gluocse meters, fewer test strips, cutbacks on how it covers insulin pumps, and no coverage at all for CGM. It appears that CMS would rather cut costs in the short-term, even if the supplies we're lacking now could prevent higher emergency room and hospital expenses, long-term complication costs, and overall lower health care costs down the line.
Many in the DOC (Diabetes Online Community) have been writing about this crappy CMS attitude toward diabetes recently, including a recent report by Catherine Price at ASweetLife, and Bennet Dunlap over at YDMV, recently highlighting a shocking report about emergency room and hospital costs related to diabetes hypoglycemia, which found that there are an estimated 97,648 events each year and 29% of those result in hospitalization (!):
The American Journal of Managed Care -- there's a group that is going to be super-geeky about costs, right? In 'The Incidence and Costs of Hypoglycemia in Type 2 Diabetes' they say, 'costs for hypoglycemia visits were $17,564 for an inpatient admission, $1,387 for an ED visit.'
Doing the math: hypos are estimated to cost about $640 million a year.
The JAMA piece goes on to say these (incidences) are far more likely to be the elderly. 'Insulin-treated patients 80 years or older were more than twice as likely to visit the ED and nearly 5 times as likely to be subsequently hospitalized... than those 45 to 64 years.' These are they very people who can't get continuous glucose monitors (CGM) to help warn off hypos, because Medicare says CGMs are not medically necessary.
Pretty upsetting stuff.
At this very moment, CMS is looking to expand nationwide its controversial and restrictive competitive-bidding program, and the agency is actively accepting public comments on how the rules for that should be created, so NOW is the time for all of us to pay attention -- even if Medicare age still seems like eons away for you personally. And CMS is looking to put insulin pumps into the competitive-bidding program, likely resulting in the same slashes in coverage and choices we have for glucose meters, and so we have to let the agency know.
Catherine Price over at A Sweet Life has a post about this insulin pump issue, and the Diabetes Community can leave public comments about this for CMS before Friday, March 28. So please, let them know!
Left Out in the Cold
Aside from all these rule changes, it's shocking to learn how many patients are already left alone, fighting personal battles for coverage of necessary supplies and critical devices they need!
I've been closely following the Test Guess And Go blog posts by D-Advocate Susan Berger in Pennsylvania, whose husband Marc is now on Medicare and has been waging the battle to get coverage for his CGM that he relies on because of hypo and hyperglycemic unawareness. His private insurance had paid for the device for years, but in June 2012 when he entered the Medicare system, the couple learned that their supplemental insurance denied coverage because of new Medicare guidelines. For eight months, they've been fighting to get the coverage that was initially denied, and earlier in March I was very sad to read they received an "Unfavorable" judgement from an Administrative Law Judge (ALJ) in their state on this issue.
Basically, the big hurdle that the Berger's and many PWDs face is that Medicare now dubs CGMs to be "precautionary" devices, meaning supplemental rather than medically critical, which they would be if they satisfied Medicare's definition of Durable Medical Equipment (DME). So CMS' new classification of CGMs allows the agency to deny coverage of them.
Honestly, I'm confused and frustrated by the term "precautionary" -- one that isn't even well-defined by Medicare's itself, but basically doesn't translate to very important. I'd argue that any diabetes supply or device is precautionary... We're trying to prevent hypoglycemia, immediate and long-term complications related to non-stellar blood sugar control, and deaths caused by hypo unawareness!
Naturally there's no guarantee you aren't going to be run over by a speeding car that comes out of nowhere any time you cross the street. But instead of allowing us the necessary tools to carefully look both ways and use the crosswalks, CMS is essentially forcing us to cross in the middle of the street with nothing but tunnel vision in the hopes we just won't get run over.
It's all very frustrating, dealing with government terminology and regulation that seems to be missing the forest for the trees. While overlooking the forest fire that's coming our way...
What we can do?
1. Legislative pushback on Medicare! In December 2013, Democratic Representative Carol Shea-Porter from New Hampshire introduced H.R. 3710, also known as the Medicare CGM Coverage Act that would add CGMs to the list of devices considered vital Durable Medical Equipment. As long as you have a doctor's prescription and follow all of the prescribed criteria, you'd at least not be denied flat-out for CGM coverage. Sadly, the bill's been referred to committee and doesn't have much chance of getting heard or even brought to the full House floor for a vote. But it represents one of the best chances our community has in getting heard about CGM coverage.
- You can ask your own Representative to co-sponsor the bill. Call your Congressperson's DC office and ask for the email address of your Congressperson's Legislative Assistant for health issues, then email that person and include the text of Shea-Porter's letter along with a personal note about why this is important to you (the constituent). A full roster of House of Representatives along with phone numbers is available here.
2. Sign one of these two petitions at Change.org, calling for better Medicare CGM coverage. These latest petitions mirror others that have come before, but with the legislative attention and so many voices being raised on the issue now, the time seems ripe to get behind these petitions for maximum impact.
3. A bill to establish diabetes oversight: There's also another legislative push to create an Office of Diabetes within the Department of Health and Human Services (HHS). Rep. Pete Olson from Texas introduced H.R. 1074 about a year ago, and it's currently caught up in a health subcommittee. If passed, this proposed Office of Diabetes, officially called the "National Diabetes Clinical Care Commission," would among other things oversee federal spending and allocation funds impacting diabetes -- including FDA and CMS operations that impact us directly in the D-Community. There are some efforts among industry and advocacy organizations to raise discussion on this effort, but in the meantime we can also contact our lawmakers about the need for this office of oversight.
4. Let Medicare officials at CMS know how you feel! You can also file a complaint here, or contact the Inspector General of Health and Human Services, about these issues. And via social media, feel free to ping @CMSGov, @medicaregov and @OIGatHHS about your concerns.
It is encouraging to know that the two major CGM vendors, Dexcom and Medtronic, are collaborating to address this. As Medtronic tells us: "We are currently working with a coalition of patient and industry stakeholders (including non-profit organizations and other manufacturers) on a solution to address this access issue for the clinically appropriate Medicare beneficiaries who need and would benefit from this therapy."
That ongoing effort mirrors what professional orgs like the Association of Clinical Endocrinologists, ADA and the Endocrine Society have done in demonstrating to private insurers the value of CGM in improving clinical outcomes for PWDs. Now it's time for Medicare to get the message!
As Susan and Marc Berger, the couple struggling with coverage, push ahead with an appeal, all of us PWDs (even if not affected now) should be concerned about what's happening with Medicare -- because the private insurance market, and likely now federal or state health exchanges, tend to follow suit on how Medicare handles diabetes coverage decisions.
So, this concerns us all.
We should raise our voices NOW about how this is important, before it's too late.