Diabetes Advocate Jonathan Davis on Accessibility Problems

Next up in our series of interviews with an 2016 Patient Voices Winners (who will be joining us on scholarship for this year’s DiabetesMine Innovation Summit in San Francisco next month) is longtime advocate Jonathan Davis from Chicago.

He has been living with type 1 for two decades today, has been employed as a research assistant on type 2 diabetes, and is now an attorney and regulatory professional in a health benefits firm. We are eager to listen to his POV on invention and the hot topic of #DiabetesAccessMatters — health insurance coverage, costs and accessibility to diabetes tools and remedies.

Without further ado, let’s hear from Jonathan…

An Interview with Jonathan Davis

DM) First, can you tell us the story of how diabetes came into your life?

JD) It might be more of a saga! After picking me up from a week-long summer camp after my fifth grade year in ’93 or ’94, my mother discovered I had melted away 15 pounds. She took me to my pediatrician, leading to a diagnosis of type 1 diabetes. Almost 20 years later, I keep on keeping on, with the ups and downs. I now use the Tandem pump with an Dexcom CGM.

On reflection, it’s difficult for me to separate my story in my diabetes narrative since diabetes is now such an essential part of my everyday living experience. However, it has not been negative: I feel that managing diabetes has gifted me with a double helping of patience and persistence, which has spilled over to other facets of my own life.

You’re living with T1D. However, you’ve also been employed in the type 2 research space, correct?

In school, I had been a research assistant for a professor on the history of type 2 diabetes. In that function, I combed through old articles about diabetes appearing from the Journal of the American Medical Association (JAMA). What struck me about these historical articles was that the paternalistic manner in which physicians watched their function and the way discordant it had been with my experience with my endocrinologist. Since faculty, this paradigm change has even more profoundly hastened because patients are beginning to be known as equally decision-makers and problem-solvers because of their care.

Can you tell us about your present career?

I am a regulatory professional for a health benefits company. I’d like not to to name my employer, mainly because I don’t want everyone to think I am speaking for this particular organization, which I am not. Health companies operate in a highly regulated sector. I assist my firm understand the laws and regulations that are applicable to it.   In addition, I help with the creation of processes to obey laws and regulations.   In practice, my job involves counselling on a broad swath of issues.

Insurance coverage and accessibility is a big topic in our D-Community — just how do you see that discussion, wearing both hats as a patient and a specialist?

First, to be clear, I am speaking solely on my own behalf and not of my company or other companies I’ve worked for.

The details around the latest catalyst to the accessibility and insurance coverage controversy — UnitedHealthcare naming Medtronic its favored in-network supplier of insulin pushes — is not clear cut to me. Why did United opt to select Medtronic over a number of the other pump companies?   What if UnitedHealthcare sent out a request to all the insulin pump companies and said that it wanted to cover less than $X,000 for insulin pumps?   What if companies besides Medtronic were reluctant to accept the lower bid because they desired to maintain higher profit margins for themselves? Or, what if Medtronic agreed that if UnitedHealthcare entered into an exclusive arrangement Medtronic, would better train endocrinologists on the merchandise, coordinate care better, utilize data better to assist patients treat diabetes, and hasten the pathway Medtronic’s Artificial Pancreas system? My purpose is that the underlying facts might not be as straightforward as some have thought. It is possible UnitedHealthcare’s decision might have been for reasons to encourage people with diabetes.  

In addition, I’ve asked myself whether the proposed solution of Diabetes Patient Advocacy Coalition (DPAC) that anything in the Standards of care needs to be covered by insurance is a feasible position. As stated on the DPAC Action Center website: “Insurance payers should not omit health care professionals’ best practices characterized by present Standards of Care.”    Really, they don’t.   Insurers don’t interfere with health care professionals’ treatment choices.   However they do put limits on what needs to be covered under an insurance contract.   And here is where the issue with DPAC’s debate appears: that the Standards of Care are focused on effects on medical outcomes and they don’t consider costs.   If two remedies theoretically created identical results, but one costs 10 or 100 or 1,000 times more than the other, the Standards of Care would rate them both. This means that using Standards of Care exclusively to specify what ought to be covered by an insurance coverage is myopic.            

How do you think our community might better advocate on those insurance-related problems (i.e. the #DiabetesAccessMatters campaign)?

Advocates might want to flip the talks by focusing on another group of stakeholders — the providers.

Traditionally, diabetes advocacy groups — including ADA and JDRF as well as for that matter, many physicians — seem to pharmaceutical companies and diabetes supply companies for financial aid.   As a result, these groups have established strong connections with these drug and device companies.   What if the DOC asked these drug and device companies to sign a pact that they wouldn’t enter into an exclusive relationship with an insurer?  

So you don’t think we’ll get anywhere lobbying insurers to change their policies?

If the focus is to remain on insurance, I’d encourage advocates to think holistically.   Insurers are under intense pressure to tamp down on the catastrophic growth in medical costs.   If medical costs are too high, no person can afford the premiums for insurance solutions.   So the question for advocates to ask is if there is a way to assist PWDs (persons with diabetes), as well as insurers, create meaningful reductions in medical costs?

Illustratively, what if urges arrived at the desk and told insurers they were willing to encourage efforts to prevent drug companies from merchandise hopping (a way to thwart the introduction of generic medications) and encourage legislation to streamline the approval of biosimilar drugs? Both these initiatives help PWDs by making drug costs lower.   There might be a better chance to construct a consensus and reach across the table to the pump provider issue if insurers felt that the urges were willing to support efforts in different areas to reduce medical costs.

Have you personally been involved in almost any diabetes advocacy efforts?

It is a broad question, but what are your ideas on the present condition of diabetes innovation and technology?

There are two variables that normally hinder innovation in the healthcare space: (1) the extended time and considerable financial commitment required for FDA approval and (2) the fact that third-party payers (the biggest of which is that the government) cover a substantial part of the price of devices and drugs, which draws manufacturers’ attention to them rather than on the patient that truly utilizes the drug or device.

Still and despite those challenges, we have seen some remarkable discoveries from the pharmaceutical (including GLP-1) and apparatus (CGM, Artificial Pancreas) industry lately. The place I feel that’s ripe for invention is straightforward, low-cost solutions that — while less splashy than other innovations — might have a broader based, deep-rooted effect. How can we utilize or Boost technology to assist people remember to carry their medications in timely manner, shed weight, get measures in each day, maintain their yearly appointments with retinologist, just as a couple examples?

I am optimistic about the prospects. Combined with the fact that companies are embracing a more consumer-centric mindset, the future of innovation and technology appears bright.

As someone who’s lived with this disorder for a couple of decades, how have you seen diabetes managenent change over recent years?

I’ve always thought I had to select a spot on a two-sided scale: I could try to attain optimum control as a diabetic patient or I could try to live as a person (but with diabetes), careful to sidestep allowing the ailment cloud my ability to live my life completely.

Recently, I’ve had the best control I’ve had for a couple of years. What I’ve learned is that more data, in itself, is not the panacea. It is a tool. And a great tool. However there are other missed tools available that helped me achieve better control, without adding additional time administration. Better control was achievable for me by simply simplifying my life and removing some unimportant choices. I could then use info I had smartly.

For example: I try to wake up (normally) the exact same time daily. There are only 3 or 4 different items that I eat for breakfast. On days once I exercise, I exercise exactly the exact same period of the day. I cap the carbs I eat in any given meal. What I’ve found is that by simplifying these facets, I am spending less time managing. By knocking out a good chunk of variables, I understand the patterns better and I am not spending much time riding the high and low rollercoaster contributed from the complexity.

For me, this strategy has allowed me to attain better control without layering on extra time for management.

What change in diabetes tools will you prefer to see to assist your Quality of Life?

The U.S. Center of Disease Control embraced the Idea of Healthy Days as a Means to measure quality of life. I’d like to see this tool put in the palms of the endocrinologists. It’d be invigorating if endocrinologists asked patients, “Inform me about days as soon as your diabetes made you feel physically unwell. Inform me about days as soon as your diabetes made you feel emotionally unwell. Let us problem-solve on these issues to give you resources so that you may have more healthy days. ” blood sugar is merely a number. Let us begin keeping score by evaluating the amount of time we felt good and could participate in life completely.

On that note, have you ever been DIYer, coming up with some way to ‘hack diabetes’ to help you perform better?

After recently moving to a new city, I “self-registered” with the local paramedic service where I reside. I told them I had type 1 diabetes, my speech, and my physician’s name, they had the ability to enter into their very first reaction 9-1-1 system. If EMS receives a call to my speech, it is going to remind them to maintain diabetes-related causes front of mind. Since I live alone, I thought that this might help because there might not be someone with me to communicate on my behalf in an emergency.

What prompted you to input our Patient Voices competition?

I wanted to become part of the dialogue in which people and companies throughout the spectrum share thoughts and consider approaches to ameliorate or resolve problems with diabetes through innovation and technology.

Which are you most excited about for the Innovation Summit?

Meeting the other competition winners and beginning the dialogue… We need a USB for diabetes. We need to require the adoption of engineering standards in order that different companies’ blood glucose members may speak to different companies’ pumps that can talk to different companies CGMs’ that may be downloaded into different companies’ data-crunching tools.   Pushing designers to make devices that can communicate with one another in a single regular language could spur innovation.

YES! We could not have said it any better on that final thought, Jonathan! We appreciate your POV and look forward to including you in the Innovation Summit.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn’t stick to Healthline’s editorial guidelines. To learn more regarding Healthline’s partnership with Diabetes Mine, please click here.

Written by on Dec  22,  2017  

Written by on Oct    01,  2017  

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