UnitedHealthCare | Test Guess and Go

In order to amplify the voices of those of us who oppose the recent mandate by UnitedHealthCare to cover only Medtronic pumps, DPAC (Diabetes Patient Advocacy Coalition) is asking everyone affected by diabetes to share their story. Follow this link to help DPAC gather “stories to share publicly within the community and, perhaps more importantly, within the healthcare and legislative communities.” Your voice will help prove that #DiabetesAccessMatters and will advocate for #MyPumpChoice and #PatientsOverProfits.

I don’t know whether my experiences will help because my diabetes narrative is that of a “privileged patient” who has always had access to prescribed insulins, meters, pumps, and CGM’s. How do I prove that access and choice have made a difference?

My Story as Submitted to DPAC:

I have had Type 1 diabetes since 1976. When I was diagnosed there was no home blood glucose monitoring and I took 1 injection of insulin per day. My chances for a long healthy life were minimal and complications such as blindness, amputation, and kidney disease were seen as almost inevitable.

Today I am 64 years old. I have gray hair and am stiff from arthritis, but my eyes are fine. My body has bruises and rashes from pump and CGM sites, but I have no numbness in my feet and my kidney function is fine. I rarely have a day without lows requiring glucose tabs, but I have not needed my husband to fetch emergency orange juice since starting the Dexcom G4 in 2012. My lab tests are good and my cardiac function tests are excellent.

So what happened? AccessMatters

Hard work paid off. Lucky genes probably helped. But what is most important is that I had ACCESS.

ACCESS to medical professionals who learned through the Diabetes Control and Complications Trial (DCCT) that controlling blood sugar results in better health for people with Type 1 diabetes.

ACCESS to new and improved insulin products as they were brought to market.

ACCESS to the newest technologies which began with home BG meters in the early 1980’s and expanded to insulin pumps and continuous glucose monitors (CGM) in later years.

ACCESS to education about how to optimally manage my diabetes.

ACCESS to social support through the DOC (Diabetes Online Community).

Along with access, I had CHOICE. MyPumpChoice

When my internal medicine doctor was unqualified to prescribe a pump, I CHOSE to switch to an endocrinologist.

After experimenting to prove that the blood glucose monitor I was using was unreliable, I CHOSE to switch brands to a meter which provided more consistent results.

When my endocrinologist and I agreed that my diabetes could be better managed with an insulin pump as opposed to injections, I investigated my options and CHOSE the pump that I believed would give me the best results.

When my doctor prescribed a CGM to combat my hypo-unawareness and extreme lows, I CHOSE to give it a try.

After a few years of failure with the CGM brand that I selected, my doctor and I worked together and CHOSE the competing brand.

I am incredibly lucky to have always had good insurance. I have had access and I have had choice. Many years ago my insurance was provided as one of my husband’s work benefits. The cost to us was minimal. Today I pay huge insurance premiums, but I still have access to the medications and durable medical equipment (pump and CGM) that my endocrinologist and I choose.

An insurance company is in business to make money and does not have a license to practice medicine. Once I pay my premiums, access and choice should be in my hands and those of my medical team. The idea that UnitedHealthCare has the right to change its policies on insulin pumps mid-year and mid-contract is wrong. Big players in the game making deals to reduce competition and limit choice should not be allowed.

How do I prove that ACCESS and CHOICE have made a difference in my life with diabetes?

I look in the mirror.

I could be mad at UnitedHealthCare.

I could be mad at Medtronic Diabetes.

I could be mad at a healthcare system that allows health insurance companies to practice medicine and mandate care decisions for their subscribers.

But mostly I am sad.

I am sad for everyone with diabetes. I am especially sad for those of us with Type 1 diabetes for whom improvements in technology have been life-changing. I am sad for everyone who has diabetes today and for those who will be diagnosed in the future.

In some ways the last five to ten years have been a golden age of diabetes care with the release of new insulins, new medications, innovative insulin pumps, and increasingly reliable CGM systems. We see parents able to monitor their child’s blood sugar while at school. We see artificial pancreas clinical trials where blood sugar levels are optimized and the mental burden of care is reduced. Encapsulated beta cell trials have allowed some patients with T1 diabetes to reduce or eliminate the need for insulin injections. The next five years could be even more impressive for the Type 1 market with the probable release of several artificial pancreas systems, the advent of smart insulin, and explosions in ways to monitor our data.

How can I be mad at UnitedHealthCare and Medtronic? They are doing what big companies do. They are trying to grow bigger, squash competition, and make money. They can talk about visions of patient-centric care, but ultimately their DNA drives them to base most of their decisions on the bottom line.

As patients in the United States, what are we supposed to wish for and whom should we blame? It is easy to lobby for national health insurance to eliminate huge profits earned by companies such as UnitedHealthcare. At the same time as a person with longterm Type 1 diabetes, there are few countries in the world where I would have access to an insulin pump and even fewer where a CGM would be funded. I can idealistically hate the idea of our dysfunctional for-profit healthcare system, but there is no doubt that I have benefited from it.

I currently use an Animas Vibe insulin pump and a Dexcom G5 CGM. Fortunately I do not have insurance through United Healthcare. As someone who will be on Medicare in less than a year, I have slowly been coming to terms with the idea that much of the future of diabetes tech will be denied to me. I wrote a blogpost in early April titled “Countdown to Medicare with Type 1 Diabetes: 12 Months” and shared my feelings:

“There is a sadness in realizing that I will probably not get access to any or all of the new technologies and medications coming to market in future years. Things like the artificial pancreas, encapsulated insulin-producing cells, and smart insulin will likely not receive Medicare coverage for many years, if ever.”

But what if the future doesn’t come? The scariest part of the UnitedHealthCare mandate for Medtronic products is the threat that no one with diabetes will receive these life-changing therapies because they will not come to be. Although I sometimes think that Medtronic is taken for granted as a workhorse and powerful player in the diabetes market, in my opinion the most cutting-edge tech devices in recent years have come from the smaller players: Dexcom, Tandem, Asante, and even back to the beloved-Cozmo insulin pump. Innovative medical breakthroughs are apt to be eliminated when choice and competition are trampled by the bigger and more financially-secure players.

As I tweeted during the DSMA TwitterChat on Wednesday night:

Tweet_R

I am not mad.

I am sad.

*****

For more information about the UnitedHealthCare agreement with Medtronic Diabetes, I suggest you start with Mike Hoskins’ article at Diabetes Mine. He provides links to other passionate blogposts and social media responses and outlines actions that we can take to have our voices heard.

Hashtags: #DiabetesAccessMatters #MyPumpChoice #PatientsOverProfits #AccessMatters