People with bleeding disorders face a variety of challenges. Healthcare access is a constant concern and covers myriad issues, including political and financial stability and regulatory and provider awareness.
Most of us spend a fair amount of time educating and advocating for these issues. One thing we don’t often talk about is the disparity in care based on patient location.
Hemophilia treatment centers (HTCs) are open minimal hours each month. Many of us travel significant distances for services provided by our HTCs. I’ve written about this issue previously when discussing telehealth, but today, I offer a new, yet not-so-new idea: the mobile HTC.
Taking programs or services on the road is not a novel approach. A million years ago, I worked for the Pacific Science Center in Seattle. The center’s motto is, “Science is everywhere. So are we.” I managed the science van outreach program, which delivers science lessons to the most remote regions in Washington.
Last week, The Duke Endowment profiled community paramedic programs, which are active in 25 of 100 counties in North Carolina. Under the program, trained paramedics visit patients — including people with high-risk conditions — in their homes for routine monitoring as well as medication and wellness checks. Healthcare costs, overcrowded facilities, and providers’ ability to reach vulnerable populations in rural and remote areas drive this innovative program.
What if HTCs went on the road like North Carolina’s paramedics? Could we achieve the trifecta of efficiency: controlled cost, increased services, and improved outreach to patients who cannot easily reach an HTC?
Let’s start with controlled cost, which is a complex issue. Cost is not limited to medication and facility charges. People miss work to attend appointments or worry about paying rent while wondering if their insurance plan will institute an accumulator adjuster. Those are real costs. Taking our HTCs on the road or exploring new models of hemophilia care delivery is an area that’s prime for research and innovation.
If we can bring science lessons and paramedics to where people live, it’s reasonable to ask these questions. We’re often so thankful when providers understand our situation that we forget it’s OK to challenge the system or ask for more. Without challenge, we have the status quo. The status quo might be OK, but why not aim for great? What if we combined the best of telemedicine and a mobile HTC? What if, through this combination, we created a stronger means of patient interaction and surveillance?
Perhaps our new motto should be: “Bleeding disorder patients are everywhere. So is our HTC.”
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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