Worried

This whole UnitedHealthcare/Medtronic thing has put me through a string of emotions this week.  Disbelief and anger batted leadoff.  Determination followed, with a string of advocacy actions which are still ongoing.  Sadness made an appearance along with despair.  Now, the more I think about it, the more worried I get.

I'm worried on a personal level, as a UHC customer, that my kid will lose coverage for the tools she uses all day every day to manage her diabetes.  Pediatric patients are currently exempt but there's no guarantee they always will be.  I've also heard she's likely to turn 18 sooner that I'd like, and then she'll be required to switch. Then what happens?  Do we fight for an exemption?  Do we (could we afford to?) pay to go out of network?  Do we bite the bullet and learn a whole new system and try to make it work for her?  Diabetes is hard enough without having to do any of these things.  Would her blood sugar control suffer as a result?  Even if eventually we learned a new system, it would take a while and the learning curve would inevitably impact her blood sugar numbers.

I'm worried that this is just the first of the surprises in store for us.  Why not make us use another brand of CGM?  Why should they allow us to go to a doctor across the border in another state when there's one just down the street who is, on paper, exactly the same?  Does she really need to test 8-10 times per day?  Surely not...5 or 6 strips per day should be plenty.  Lab work again so soon?  Nah- just get it done once a year no matter the results. 

I'm worried because this decision represents another big step in the elimination of healthcare choices for patients and their doctors.  UnitedHealthcare is a huge insurer.  They can't be the only one going down this road when it comes to durable medical equipment.  Companies have already been down this road for pharmacy benefits, physician choices and more. Wherever we turn for insurance our choices will become increasingly limited.  And for those without the means to go out of network or pay a higher copay for a different doctor, tier of drug, or medical product, choices are disappearing entirely.

I'm worried about the 'big brother' language in the information about this agreement.  “UnitedHealthcare and Medtronic are working together to better serve people with diabetes by combining their collective resources, data and expertise," an e-mail statement from United Healthcare's corporate communications spokeswoman, as quoted in a Diabetes Mine overview of the situation reads. "This will include assessing how the combination of advanced technologies and patient support programs can improve care plans for individuals using insulin pumps... we aspire to bring a value-based approach to diabetes care that tracks clinical outcomes for UnitedHealthcare members on insulin pumps and places greater focus on quality rather than the volume of care delivered." My insurance company wants to track my child's 'clinical outcomes' to improve her 'care plan?'  Maybe we don't need to go to the doctor at all then.  See also: privacy, numbers don't tell the whole story, I thought giving consent to be part of a study was an ethical mandate, and maybe if she could choose the best tools for her those outcomes would be better and we wouldn't have to improve her care plan.

And what about innovation?  I'm worried that if there's no competition for customers, because customers don't have a choice, companies won't invest in research and development.  Until Tuesday we were keeping our eye on Tandem.  We were interested in the pump and in any technology they might develop in conjunction with Dexcom.  We're not due for an upgrade anytime soon, so these were fleeting thoughts. But the speed at which so many companies seemed to be innovating made us very interested in seriously investigating, and talking with our endo about, a variety of  products when the time came.  Now it looks like we're stuck with Medtronic who, since we don't have a choice, can provide whatever products it chooses and innovate at whatever speed it chooses.

I'm worried, in what is now broadening out to a philosophical way, about the state of the healthcare system in our country.  How, in what's billed as the most technologically advanced nation in the world, are people stuck with no choice in the technology they can use?  How, in a free market economy, can we accept losing the freedom to choose our own products?  How, in a nation of checks and balances, have we gotten to the point where giant corporations have control over our personal health? 

I'm worried.

I was grateful last night to have
chosen this technology, when I was able to use the
meter remote to deliver a correction bolus
to my sleeping child from across the room.

Dear United Healthcare

Dear United Healthcare,

You have been our family's insurance provider for the past 10 years.  I have repeatedly sung your praises regarding the coverage you provide for my daughter's diabetes supplies.  Our coinsurance costs are minimal compared to what so many other people pay out of pocket.  We've had choices of insulin, glucometers, equipment companies and medical providers.  We've appreciated that. These choices have allowed my daughter to thrive and to manage her diabetes at the same time.

Today I learned that beginning this summer you will only contract with one insulin pump company.  It is not the company we've been getting insulin pumps from since my daughter was 2.  It is not the company we chose after exhaustive research with our health care providers.  It is not the pump the endocrinology team recommended because its insulin delivery format was different from others and therefore a better fit for the patient.  It is not the product we use because we find its features make diabetes as easy to manage as possible.  It's not the tool we have spent 12 years learning to use as a substitute for my daughter's pancreas.

Diabetes management is a unique process. Every person using a pump is using it differently.  People deliver different doses when they eat or correct high blood sugars.  People program different basal rates based on a whole host of physiological and personal factors.  People use pump features, many of which are very different in different brands of pumps, to tweak those doses and basal rates based on their very unique personal needs.  Changing access to features people use to manage their disease well will, logically, lead to them managing it less well.

I'm grateful to hear that this new rule will not (yet, at least) apply to pediatric patients.  I also understand that you will provide exceptions to the rule should a physician certify a particular pump as medically necessary.  Yet the reality is that most of your customers will no longer be able to choose the tool they are most comfortable using all day every day to keep themselves both alive and healthy.

I've always assumed that the good coverage you've given for diabetes care in the past came not from a place of benevolence but from an understanding that giving the patient the best tools to manage diabetes at home leads to fewer hospitalizations and fewer larger long-term health issues.  I hope this is not the first of other roadblocks you intend to put in the path of patients who are thriving with the tools they have.  With less effective tools people will, logically, manage diabetes less effectively. That seems like a big price to pay for short-term financial gain.  For the benefit of all of your customers with diabetes, please reconsider your agreement with Medtronic and the philosophy behind it.


Sincerely,

Your Previously Happy Customer

We love the tiny basal increments, the meter- remote feature,
the way the temp basal works, the customer service,
 that it's waterproof, and that we're so
 familiar with it now that we can use it in the dark.
  Please don't take it away.