Jeffrey Halbstein-Harris

A guest post from member Jeffrey Halbstein-Harris – this is a small slice of a longer piece he used as the basis for a speaking engagement.

This is a call to consumers: my brothers and sisters who rely on healthcare and its infrastructure’s support throughout their life.

I was leaving a meeting of healthcare policy experts (mostly insurance executives) two years ago after giving a talk on the adoption of health information technology by “patients.” The story I told was my own: a man who at the age of 56 had retired after nearly 34 years working in the industry and 48 years of living with type-one diabetes and associated co-morbidities.

What I had observed, what I had experienced, and what I had learned as both server and recipient of care. The one comment I remember making that got a palpable response was, “It is a lot of work having diabetes, we have all the technology we need and then some; so much that it is confusing and it is quite expensive for most pocket books.”

On the way out I stepped onto an elevator with a group of people who were in the meeting and one of the executives looked up at me and said, “So, having chronic disease is hard huh?” “Yes,” I replied. The executive’s face became a bit flushed and he said, “Well, I think it is all about personal responsibility.”

That one striking response has continued to echo. I became curious patient at the age of 10. Since that time, I’ve had another echo, one that contains questions: How do I keep up with the work, financial requirements and communication needs of a chronic disease? The response I get from the healthcare industry boils down to ”Be Responsible!”

We are being asked to participate in healthcare design; don’t forget to include the chronically ill and poor in your focus groups. We healthcare consumers are now gaining traction in the policy reform arena. Yet I fear that the people who are on the cusp of frailty are still on the sidelines. When I speak of frailty, I mean those whose physical disease might be a highlighted issue on their “problem list,” but their multi-dimensional bio-psycho-social landscape is mischaracterized and under-resourced.

This population accounts for 70% of the health care dollar, by the way. It is entirely possible that our attention to the design of technology, measurement, integration and payment could completely pass over those who can benefit the most, who could experience the greatest increase in quality of life and gains in functional ability. I do not see adequate representation from an adequate cross-section of consumers to accurately communicate our ideas regarding healthcare system processes, value-assessment and payment reformation.

At this stage in my life I am free to discuss barriers to universal coverage, quality health services, thorough communication and comprehensive care for America’s people. So now I have my local postal worker asking me about early retirement, the cost of managing asthma under the Affordable Care Act and how to search for replacement steroid inhalers that cost less than $127.00 per unit.

All of us that have overcome obstacles to good healthcare have found “workarounds.” I am asking you to share these with your physicians and join a social group online with people who deal with similar maladies to your own, and participate in the cross talk. The outcome will be a healthcare system more precisely calibrated to reality.

You see, few diabetics talk about the number of free glucometers they receive each year as pharmaceutical companies attempt to illegally switch your brand loyalty that was established by your physician. I have seven glucometers in my desk provided by telemarketing and on-line marketing companies that somehow found out I am now covered by Medicare.

I know that we all like to be in control of our own destiny and have individual choice, but I can’t help but think that the $500 in supplies that I received from marketing campaigns should be redistributed to folks with no insurance coverage. As we share and document our stories I have little doubt that new cost saving, experience-enhancing processes will be created that improve the quality of care for large patient population subsets such as persons with asthma, COPD, diabetes, arthritis, multiple sclerosis, cardio-vascular disease and…well, the list goes on, doesn’t it.

Be an example for others, fellow consumers. It is the only way we will get what we need!

Jeffrey Harris, Just One More Patient in the Pile