How the Cost of Health Care Turns Patients into Triage Nurses

I took our family Jeep into the auto shop today. It’s served our family well, but it’s showing its age. The mechanic and I have an Carie Shermanunderstanding: He focuses on the problem then scans it for things that compromise safety. He inevitably calls with a lengthy list of everything that’s broken (thankfully the cassette tape deck still works!). Today I asked him to get us through the next three months. When he calls, we’ll agree to the cost of the parts and the labor. He will fix it and I will stop worrying about it breaking down and start saving for the next round of repairs.

I recently presented a webinar on the 7 “Sins” of Health Communication, in conjunction with Talance, Inc. (I earn a living helping health care organizations with their written communications.) I talked about my experiences as a patient and ways people in communication roles can help build trust and understanding while reducing the fear we patients have when our bodies break down.

The final “sin” I talked about surrounded money. At this time, cost of care is one of my biggest concern as a patient. I almost avoided the topic of money altogether—mostly because I feel angry and defeated by the amount of money I’ve paid in the last six years. And I feel ashamed by the amount of money I owe at this very moment.

This is my theory: the cost of health care turns patients like me into triage nurses. Like the triage nurse, we scan our bodies and decide on the “broken” things that take priority. Unlike the triage nurse, we are not trained professionals. 

There are a bunch of things I would love to fix on my body right now. I won’t bore you with details. But frankly I spend so much time in the rheumatology clinic that it’s easy to ignore the rest of my body. Plus I have a stack of bills from a procedure I had earlier this year. So for now I wait, hoping the issues resolve on their own. Though I’d love to feel better, the cost of health care has my bank account bleeding out.

Everyone knows the cost of care is a hugely debated topic. I find it interesting that people like me are finally starting to demand answers. Health care organizations need to be more upfront about costs. Like my mechanic, they need to start thinking about how they can help us “frequent fliers” spend our limited health care dollars. I get that I’m responsible for my portion of the cost of my care. But let’s face it: when you’re in pain, you’ll do anything to feel better. Including taking your doc up on the referrals, tests, and medications you’re offered. Cost is the last thing on your mind. And unless you’ve got Cadillac-level insurance, the costs quickly become overwhelming.

I don’t have a Cadillac health plan. But I’m still lucky to have insurance. After working in health care for nearly two decades, I’m fairly health literate. But I’m also human. I’m ashamed that my body fails me. I’m worried about the next time it fails. I’m scared that I’m wasting my health care dollars on the wrong stuff. I’m embarrassed that I can’t write a big check and clear all these bills. I’m terrified that people more vulnerable than me are going to lose their coverage. And as they become triage nurses for their own bodies, they’ll get sicker, and sicker, and sicker, eventually ending up in the emergency department for things that could have been improved had they not been forced into triage mode.



Father’s Day: Men Have Lupus Too

My name is Brian and I have Lupus. When I was diagnosed in 2011, it wasn’t just my life that changed, but the life of my family. I have been happily married for 18 years and am fortunate to have six wonderful children, all BOYS! Being a father with Lupus was challenging at first, mostly because they did not understand what Lupus was. Lupus has changed my daily routine and has made it challenging to keep up with the energetic lifestyle I had with my boys.  I have always been an active part of my kid’s lives, from coaching their sports teams to spending evenings and weekends in the park playing. 

Between my lupus symptoms and the never-ending schedule of doctor appointments, maintaining my pre-lupus lifestyle is a daily struggle.  The silver lining is that there is hope for a better day and better test results. There will always be tough days, but I have learned to appreciate small victories instead of wanting the battle to be won. With the support of my family and the lupus support group, I am able to take each day as it comes and focus on the future.

This year I am hoping to be more active in local lupus events and am looking forward to participating in the 2017 Lupus Colorado Community Walk with the Purple Healers support group. I hope by sharing my story it will encourage more men with lupus to understand that they are not alone.  This Father’s Day, I want all Lupus Warriors to remember that by never giving up, we can have days were we can say, “Lupus I WON TODAY!!!”


Advocacy Updates

by Lupus Colorado CEO Inez Robinson

The staff and Board at Lupus Colorado has been busy advocating for you – the lupus patient. It’s been an exciting and busy few months!

Research Funding: Board Member Linda Garrett and I traveled to Washington DC in March to speak directly to Congress regarding increased research funding for lupus and the inclusion of pre-existing conditions in the American Health Care Act. On May 5, President Trump signed H.R. 244, a bipartisan spending bill that establishes for the first time an annual $5 million lupus medical research program at the Department of Defense, provides $34 billion for biomedical research through the National Institutes of Health, and appropriates an additional $2 million for the Lupus Initiative at the Office of Minority Health. I want to thank each of you who called your representatives and asked them to support this important research funding.

Medicare Part B.: Lupus Colorado has joined over 150 other medical and advocacy organizations asking Secretary Price to protect Medicare Part B reimbursement of specialized medicines including those administered in an outpatient setting. Medicare Part B covers a small subset of medicines that are often used to treat patients with serious and complex conditions, such as lupus.  Click here to read the entire letter explaining our view to the Secretary.  

Non-Medical Switching: In the face of rising health care costs, some commercial health plans are attempting to switch stable patients to a less expensive medication in hopes of lowering costs. Known as “non-medical switching,” these changes can result from formulary changes that eliminate coverage for a patient’s medication or increase the level of required cost sharing.   We believe that compelling a stable patient to change medications for reasons unrelated to his or her health; often driven by health plan design, policies or cost savings is not reasonable or safe. In fact, several studies indicate higher overall patient costs when this type of policy is implemented.

We’ll post updates to these important issues to our social media and website in the coming weeks and months.  Are there other issues that are concerning to you? Please let me know at info@lupuscolorado.org.