American College of Physicians: Internal Medicine — Doctors for Adults ®

Monday, July 13, 2015

The irrational rationing of health care

As I detailed in my prior column, Manny Alvarez is a 23-year-old college student with the misfortune of having not just a devastating cancer, but the wrong devastating cancer. The chemotherapeutic agents shown to be highly active against his specific tumor cells are FDA approved for the treatment of leukemia, but not for the stunningly rare kind of sarcoma with which Manny has been diagnosed. Nothing is FDA approved, or standard care, for the stunningly-rare cancer with which Manny has been diagnosed.

That potentially effective drugs have been identified at all is thanks to Manny's exemplary oncologist, Dr. Breelyn Wilky at the University of Miami Health Center. Dr. Wilky sent specimens from Manny's tumor, resected from his leg and requiring partial reconstruction of his femur and knee, to be tested in a lab against some 200 potential medications. Dr. Wilky did this because Manny had no other options; as noted, there is no established treatment for his cancer, and the drug he had received in a clinical trial at the NIH was entirely ineffective. Dr. Wilky is the kind of doctor we all hope to have in a really tough situation; the kind that doesn't stop until she finds a way to help.

She found a way. The particular leukemia drugs she tested were completely effective against Manny's tumor in the lab, killing off all the rogue cells. That does not guarantee the same results in the complex system of Manny's body, but it is more than a sound basis to justify their use.

Unfortunately, Manny's insurance company, Blue Cross Blue Shield of Florida, has chosen to see it differently. The drugs in question are very expensive, with costs of treatment running to some $300,000. Since they are not established as standard therapy for Manny's particular cancer, the insurer has declined to cover those costs.

Does that make Blue Cross Blue Shield of Florida the bad guy in this scenario? Both yes, and no.

Yes, because it's perfectly clear what needs to happen here. No family, no doctor, no decent person could sanction denying potentially life-saving treatment to this 23-year-old who should have his whole life ahead of him. There is reason to believe effective treatment has been identified; there is a moral obligation to administer it. That in turn means the bill needs to be paid, if not by the insurer, then by the family. If there are actual human beings at the insurance company under the veneer of dispassionate bureaucracy, they must be aware of that. They must know that they have, in effect, said to the family: deal with your son's devastating cancer, and at the same time, find a way to raise $300,000 and/or go bankrupt. Whether or not that makes them the “bad guy,” I think we can agree it's a long way from customary “good guy” behavior.

But there is a defense of BCBS of Florida in that the problem is bigger than them. They clearly can't cover every therapy requested in a desperate situation, many of which might be misguided and futile. In the absence of a national standard and clear criteria for differentiating valid from invalid requests, their fallback position is the same as every other insurer: cite chapter and verse of the company rule book.

But I don't think that satisfies. We should have, and could certainly establish, a national standard for denying insurers the right to deny coverage of care. Manny's case would certainly satisfy any reasonable criteria. For instance, we might say that insurers are obligated to cover non-standard treatment if, and only if:
1) there is no standard treatment being overlooked or untried;
2) there is a desperate need for treatment, as affirmed by a qualified physician;
3) there is a specific treatment being recommended by a qualified physician; and
4) there is evidence to support the potential efficacy of the treatment.

If the bar is set anywhere in this neighborhood, Manny's case clears it readily.

When I expressed some of these same sentiments previously in my columns, one of the many, mostly very supportive comments received included this: “The insurance company is not a bottomless well and chooses to help as many people as they can with the highest probable success outcome. If they cover three kidney transplants instead of this one case, saving three lives, but not helping one, is that the right call?”

This argument could have validity if any such either/or decisions were actually made. But with the exception of an abandoned health care rationing experiment in Oregon, they are not. If a treatment is considered standard, it is covered, no matter how many other lives might be saved with a reallocation of those same resources. Consider, for instance, how much of the total health care expenditure in our country is directed to the end of life. Much of this care is for what we might call “heroic” measures, but misguided might be a better word. The recipients are often very old, and extremely sick, with little to no prospect of getting back to a decent quality of life. Hundreds of thousands of dollars are spent routinely on nearly futile efforts in such scenarios. So, the rebuttal to my commenter is: How many Mannys might we save if we avoided futile care with no hope of restoring anything resembling health, and little hope of doing more than postponing death by some scant number of miserable days?

The reality is that we have not even grappled with the question. What is routinely covered is covered, what isn't is not, and if that results not only in rationing, but totally irrational rationing, we all seem to be OK with it. Until the patient needing some treatment not situated in this silly scenario is our son, or our daughter. Then it's not OK, which really means, it never was.

We need to help Manny, and can, by helping to change the insurer's mind and by lending what direct support we all can to his family. He is in the expert and caring hands of Dr. Wilky, and getting the treatment he desperately needs as we speak. Let's do our part to make sure that doesn't bankrupt his family.

But we need to change the prevailing standards, too, because there will be another Manny, another family, and another insurer, and if the same rules apply, if will feel a lot like déjà vu, all over again. Some other family will be the victim. We need a national standard, not bureaucratic and profit-driven knee jerks, to guide coverage of non-standard care. I will be working on that, and seeking the help of my friends in Congress.

We also need to consider that we have just three options for the allocation of health care resources. We can choose not to ration at all, in which case the lone argument against coverage of Manny's care is undone. We can choose to ration rationally, in which case Manny's care would be a priority on almost any scale imaginable. Or we can ration irrationally, and deny care when it is medically indefensible and morally repugnant to do so, even as we spend extravagantly on misguided futility. Alas, until we address it, that last, bad option, is the status quo.

David L. Katz, MD, FACP, MPH, FACPM, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care. He is a board certified specialist in both Internal Medicine, and Preventive Medicine/Public Health, and Associate Professor (adjunct) in Public Health Practice at the Yale University School of Medicine. He is the Director and founder (1998) of Yale University's Prevention Research Center; Director and founder of the Integrative Medicine Center at Griffin Hospital (2000) in Derby, Conn.; founder and president of the non-profit Turn the Tide Foundation; and formerly the Director of Medical Studies in Public Health at the Yale School of Medicine for eight years. This post originally appeared on his blog at The Huffington Post.

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Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Iowa City, IA, with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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