Dr. Facebook (Tales from the Front Lines of Wellness in the U.S.)

As the Senate recently abandoned a pre-recess attempt to pass the American Health Care Act (AHCA) that the Congressional Budget Office (CBO) estimates will leave 22 million Americans without heath insurance, I reflect on my luck in having one of the best employee-provided health insurance packages available, and why it is just one part of the broken U.S. healthcare system.

I have not had to understand the pros and cons of the AHCA. I have friends who have enrolled in Obamacare, and some of them love it, and others hate it, both with similar levels of passion. My friends’ experiences are equally real, but I have not asked why their opinions differ so substantially. My dominant feeling about AHCA, admittedly selfish, is gratitude for not having to depend on a plan that is on such unsteady ground as our politicians debate it. At the same time, I am acutely aware that someday I may find myself without employee-sponsored healthcare, and I cringe to think that the AHCA may impact even private healthcare plans. One way or another, I will depend on whatever the result of this debate will be. So, about my luck…

I have a chronic disease, Multiple Sclerosis (MS), which is mostly under control 15 years after diagnosis. I am familiar with MS’ worst-case scenarios and unsettling implications of the AHCA for pre-existing conditions. My current healthcare plan covers the grotesquely expensive prescription medications, if I chose to take them, which I do not (which is another story). At least I have a choice. I also have all the resources at my disposal to study healthcare options and navigate the healthcare system in which I am so fortunate to be a “member.” I have an advanced degree, which implies I should be able to solve basic riddles. I have 28 paid days off per year and 12 federal holidays. I have weekends and evenings mostly free to organize my life, pay bills, and make sense of communications from my health provider.

Even in my ideal health insurance scenario, navigation of the healthcare system is a second full-time job. I am not complaining. I am grateful to have that option. My friends from OECD countries marvel at my gratitude, based on their own countries’ healthcare systems and on statistics by now familiar to all and reinforced annually with each new study. According to an April 20, 2017 NPR article, analyzing data from the Institute for Health Metrics and Evaluation, the U.K. spends less per person ($3,749) on health care than the U.S. ($9,237). Despite its high spending, the U.S. does not have the best health outcomes. Life expectancy, for example, is 79.1 years in the U.S. and 80.9 years in the U.K. The article goes on to note that, while the U.S. spends more on health care than any country in the world, it ranks 12th in life expectancy among the 12 wealthiest industrialized countries. At the risk of sounding ungrateful, my personal experience – and the experience of friends who have engaged in the U.S. health system for a major illness (an admittedly unscientific, but nonetheless heartbreaking, study) — is that the U.S. healthcare system is as broken as statistics say it is.

My own experience is not unique. Recently, a friend with a very similar set of the best resources available, though with a different healthcare plan available to employees of the federal government, sought treatment for her 13 year-old daughter’s adolescent idiopathic scoliosis. Like MS, scoliosis is a household name as far as modern-day afflictions go, familiar to most Americans. As such, my friend and I believed that good treatments would be straightforward and affordable through co-pays. While our health challenges are quite different, they share symptoms of a broken healthcare system.

Social media-sourced treatment options: Current treatment options for MS and scoliosis are better than the old days — good but with health outcomes that do not inspire hope. Quite the opposite – I personally felt hopeless when seeking options at the National MS Society (another long story). MS treatment options include an increasingly broad spectrum of pharmaceuticals that boast a percentage reduction in symptoms for only one of four MS categories – predictably, for the least aggressive type. I’ve often asked myself, what is percentage improvement for someone who is wheelchair bound? I did not want to wait to find the answer through personal experience. After those pharmaceuticals, you are arguably on your own. Hence, I sought non-pharmaceutical options.

For scoliosis, fusion of vertebrae is generally considered a very good option, even while it can severely limit flexibility and is irreversible with an increased risk of complications compared with simpler, as-yet experimental procedures. In both our cases, Board-certified doctors are understandably reluctant to make career-risking recommendations of any procedure without ample evidence of efficacy, if it is not FDA approved.

Out of desperation and/or exasperation, patients or their guardians seek answers from social media. As crazy as it sounds (and I know it sounds crazy), and despite stern warnings from my own physicians, my friend and I individually have pursued options discovered on organically formed, private Facebook groups. These groups provide a source of hope in alternative treatments for patients and their caregivers from around the globe based on a shared medical concerns. Both my friend’s daughter and I found and have benefited from treatments that Board-certified specialists did not bring to our attention and initially rejected when we informed them of promising options. This obstacle led us both to shop around for Board-certified doctors more familiar with or open to alternative treatments.

A quagmire of bureaucracy: The paperwork. Even the healthiest among us know it well. If you have a chronic or idiopathic disease, multiply the paperwork by a thousand percent. Both my friend and I have had to maintain detailed timelines that track details of telephone conversations with “customer-care representatives” who explain the insurance company’s tangled reimbursement or appeal processes and use bewildering terminology (e.g. appeal versus utilization management), speaking plain English only to emphasize that the insurance company will not guarantee payment via telephone, nor it seems, in writing.

For example, in exploring alternatives to spinal fusion for her 13-year old daughter, my friend found (yes, on Facebook) an experimental medical procedure – Vertebral Body Tethering (VBT) – an off-label use of medical hardware currently approved for lumbar fusions in adults with degenerative disorders. After her health insurance company rejected the Children’s Hospital at Dartmouth-Hitchcock’s pre-approval documentation, my friend appealed again, and her insurance company convened its internal Board of general practitioners with no specialization in adolescent idiopathic scoliosis nor in VBT to review the appeal. Her daughter’s scoliosis worsened significantly (from a 34-degree curvature at diagnosis in October 2015 to a 43-degree curvature in September 2016, while wearing a back brace, diligently doing special exercises, all with increasing back pain. I will not waste your time explaining the painful teasing that any teenager endures while wearing a back brace, nor the fact that girls’ bone growth accelerates during the ages of 10 to 15.

After three rejections by the health insurance company, my friend and her husband submitted an appeal to their insurance company based on humanitarian grounds and copied their Congressional representatives. In response, her insurance company sent a two-page letter. On page 1, they wrote, “we have determined to allow, on an exceptional basis, coverage for the surgery you have requested [your daughter] receive.” On page 2, the insurance company wrote in bold font, “This is not an approval for claim payment. This approval is only a confirmation of medical necessity under the Member’s Service Benefit Plan contract. We have not reviewed your health care plan. Depending on the limitations of the health care plan, we may pay all, part, or none of the claims.” Estimated cost for VBT: $200,000. Fingers crossed.

Institutional resistance to evidence-based solutions: At the risk of sounding like a conspiracy theorist, I have wondered if the system is designed to drive patients and their caregivers out of the healthcare system to reduce expense and increase profit for health insurance providers. For example, in 2014, a jury awarded $37 million to the surgeon who pioneered VBT and performed it for my friend’s daughter. The doctor had patented a fusionless alternative that minimizes [adolescent scoliosis’] impact on the growth, motion, and function of the spine, and he licensed the device to the spine division of Medtronic Inc., one of the world’s largest medical device makers. The verdict – being appealed — was based on the jury’s findings of fraud and breach of contract, including failure to market the device as it had its other license for spinal-fusion hardware.

For my MS, my well-meaning but understandably risk-averse neurologist over a decade sternly rejected my non-pharmaceutical treatment, created by Australian Dr. George Jelinek, who wrote the book, Overcoming Multiple Sclerosis, after his own diagnosis of MS and his mother’s death from complications of MS. Meanwhile, representatives of pharmaceutical manufacturers – in spite of my repeated requests over several years to take me off their call lists — called me each year to wish me a happy birthday and inquire about my disease progress. Oh, how my birthday balloons deflated at their mention of my disease progress. After my MRI showed that several brain lesions had disappeared did my neurologist state, in writing no less, that I should continue my alternative treatment. Such a statement must be a risky move for a Board-certified physician; otherwise, why would doctors resist such cost-efficient – indeed, in my case, cost-free – healing options?

As for my friend’s daughter, eight weeks after her VBT surgery, X-rays show that she has a zero percent curvature in her lumbar spine. She is excited for summer vacation after she finishes camp. Her future is bright, brace-free, no crippling back pain, and no life-long deformities.

Imagine if my friend’s daughter and I had time-sensitive illnesses, such as life-threatening cancer, or we didn’t have the freedom of generous paid vacation and sick time to spend dozens of hours on the telephone with various customer-care representatives. What if we did not have time to maintain trackers of various communications about appeals and research alternative treatments? We know the answer to my questions. The result would be the statistics I cited above, which is the current reality of the U.S. health care system.

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