How the system spells trouble for one health expert’s Rx

Susan Heavey

About Susan Heavey

Susan Heavey, (@susanheavey) a Washington, D.C.-based journalist, is AHCJ’s topic leader on social determinants of health and curates related material at healthjournalism.org. She welcomes questions and suggestions on resources and tip sheets at determinants@healthjournalism.org.

Last week, I shook the medicine bottle and felt just a few pills left. At the same time, weather forecasters were tracking hurricane making its way toward the eastern United States. I picked up the phone, called the 800-number on the bottle, punched in my prescription number and my refill was on its way. My biggest worry, as I eyed the last few pills clinking at the bottom, was whether this storm would somehow delay the delivery.

I know, I know: first-world problems. I was thinking about that as I read Aaron Carroll’s viral piece on his prescription refill ordeal.

Carroll, a professor of pediatrics at Indiana University School of Medicine, detailed his quarterly struggle to get refills to treat his ulcerative colitis, juggling lab orders, blood tests, pharmacy networks and doctor’s orders. Reading his play-by-play, it’s easy to see the stress this involves. His piece, “Trapped in the System: A Sick Doctor’s Story,” published in The New York Times’ Upshot blog, quickly generated hundreds of comments.

And doesn’t everyone have some kind of prescription horror story to share? Not just in obtaining refills but in getting the prescription, getting it filled and so many other small steps that can quickly swell into bureaucratic nightmare. In fact, Carroll’s story prompted such a storm of feedback that he published a follow-up Q&A on another blog he contributes to, The Incidental Economist.

I’ll admit. I read both of Carroll’s pieces with a twinge of survivor’s guilt. As he wrote, having health insurance is “only one measure of access. In many other ways, access is still surprisingly bad.”

Coverage ends up just one of the hurdles, notes Carroll, who is also an associate director at Indiana’s Children’s Health Services Research Program. For him, the medicine is life-changing and leads him to a nearly symptom-free life amid a disease that can truly be a panic-inducing and potentially embarrassing. What’s vexing is that his condition is not rare and doesn’t require any specialty medicines. And it’s still painfully hard to get.

Carroll writes, “The medicine is old and it’s generic. It costs about $80 for three months even though I haven’t met my deductible. But this story isn’t about money. This is about the nightmare of how hard it is for me to get the drug.” He spends countless hours shepherding his prescription and tests through the system just to find relief.

Millions more people in the past few years have access to health insurance though subsidized plans on the health care exchanges or states’ expansion of Medicaid under the 2010 healthcare law. But, when it comes to medicine, Carroll’s piece highlights that just having the benefits doesn’t necessarily bring them to your door.  In my case, it did – before the storm that never materialized. But, weather aside, what about people who don’t know how to navigate the system? Someone working two jobs without the time to devote to chasing around doctors and lab orders and results?

If someone like Carroll has a tough time getting his meds, it doesn’t bode well for everyone else. As he wrote: “This could be so much simpler.”

1 thought on “How the system spells trouble for one health expert’s Rx

  1. Laura Henze Russell

    Here’s another story. Imagine if, after 20 years of fibromyalgia and a year of escalating immune, dermatological, and neurological problems that none of a score of specialists could diagnose, by the grace of God, one of your doctors heard a presentation at a conference that symptoms like yours could be caused by reactivity to dental materials. Somewhat incredulous, you found and spoke with other patients who had horrific symptoms like yours and found out that they had recovered by working with a biologic dentist and functional medicine physician. It cost a small fortune, because your dental plan would not pay the same percentage toward replacing an FDA approved but dangerous for you filling, and sat on decades of your premiums and left you with a sizable bill. You got tested for heavy metals which confirmed a clinical diagnosis of mercury poisoning. You learned there are genetic factors that influence how well people clear vs. bioaccumulate heavy metals and toxins, and you lost the gene lottery.

    You began to recover and regain your life, your ability to work and function professionally, your ability to enjoy your friends and family vs. the burden of serious illness. Some of the treatments you needed, like lymph drainage massage and supplements to boost glutathione and help with mercury toxicity, were not covered by your health plan, and you exhausted your FSA.

    You researched this topic in depth, and learned that the U.S. lags other nations in protecting its citizens from dental mercury exposure, and is stuck in the 19th and 20th Century. All patients are “average” and can tolerate neurotoxins off-gassing in minute amounts in the oral cavity, the gateway to the airway and the digestive tract. You learned that the FDA drafted a long-awaited Patient Safety Communication in 2012 but that the Department of Health and Human Services did a faulty cost benefit study based on a flawed risk assessment and decided the cost of more expensive dental materials for poor children and families, Native Americans, and the Military were not worth protecting the (not so) “tiny number” who cannot tolerate mercury. Politicians and the media were not eager to cover this topic. They had been scared away by ‘science-based’ campaigns that are spun more deeply and successfully than those revealed by Steven Brill in his riveting series, “America’s Most-Admired Lawbreaker.”

    You began to look into Precision Medicine, as the principle of giving the right person the right medicine at the right time makes sense for medical and dental devices. It turns out this concept does not exist for medical devices. While dozens of commercials tell you to “ask your doctor if X is right for you,” none of them tell you to ask whether a medical or dental device is “right for you.” When it is wrong for you, it is a 24/7/365 source of inflammation, fueling a host of chronic conditions and diseases.

    So among the social determinants of health is regulatory policy. FDA regulations governing medical and dental devices are 40 years old. They are practically medieval.

    We need a new framework for “Precision Devices” in the Senate version of the 21st Century Cures bill. Clinical trials with “basket studies,” written informed consent, and biocompatibility screening of individuals for device materials before they are installed to avoid the tragic consequences of Essure, Mesh, dental amalgam and more for people whose immune systems cannot handle them. This will improve health outcomes. This will lower health care costs. This is not rocket science. It is common sense.

    Try navigating the system when it denies your immune reactivity and device intolerance exists. This could be so much simpler. We need a grassroots movement for Medical and Dental Device Safety Urgent Reform (MEDDSURGE).

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