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

Monday, July 6, 2015

Rare disease, rare indifference, and the case for our righteous indignation

There are times when the addition of insult to injury warrants more than our forbearance. Sometimes, it warrants righteous indignation, and a revolt. This is one of those times.

The insult in question is the denial of coverage for care by Blue Cross Blue Shield of Florida.

The injury is a rare and rather dreadful cancer of connective tissue in a 23-year-old student at the Florida International University, named Manny Alvarez. I don't know Manny personally, but there is little separation between us. My daughter is a student at the University of Florida, and Manny is her friend and the boyfriend of one of her best friends and classmates.

But we were connected anyway, because Manny is me, or you. He is our brother, or son. There but for providence goes any of us, or someone we love. Manny's cancer, alveolar soft part sarcoma (ASPS), has nothing to do with anything he did or didn't do. The cause is almost certainly some as yet unidentified genetic factor. Manny was a happy, healthy, and by all accounts perfectly delightful young guy just living, when at age 22, he discovered lumps on his arm and leg. Just like that, the slender thread from which we all dangle was revealed. He had an already advanced form of a rare, devastating cancer spread throughout his body.

Manny has suffered accordingly, although he remains both resolute and optimistic. After all, his whole life is, or should be, ahead of him, and he wants it. He deserves it.

But he has suffered. With few good options, Manny was enrolled in a clinical trial at the National Institutes of Health, where he received chemotherapy. Despite that treatment, the tumors progressed to the point where they threatened his limb, requiring a partial replacement of his femur, and his knee.

His family's insurer, Blue Cross Blue Shield of Florida, has no doubt already incurred considerable expenses, but that's why we have, and pay for, insurance in the first place. Few of us will ever need treatment for a rare cancer, but we all pay our premiums so that those who do, will get it.

The story next takes a turn that warrants our collective action, in defense of a young man who deserves every chance we can give him to live; and in defense of our shared skin in the games of fate.

Manny's oncologist at the University of Miami, Dr. Breelyn Wilky, had tumor specimens from the surgery tested against an array of chemotherapeutic agents. Rather to everyone's surprise, and much to their delight, a group of medications customarily used to treat leukemia was highly effective against Manny's cancer in the lab, killing all of the malignant cells. Manny's doctor submitted a request to cover the costs of this treatment, which runs to roughly $300,000. The insurer declined. The denial was appealed, and again declined.

It's true, the drugs most likely to give this young man an extended portion of his life back are not standard treatment for ASPS with metastases to the lungs. But then again, there is no standard treatment for this condition. The drugs are FDA approved for the treatment of cancer, just a different cancer. In other words, if Manny only had a more conventional misfortune, i.e., a more common kind of devastating cancer, there would be no conflict.

If use of these drugs in Manny's case were all about wishful thinking, we could better understand the insurance company case. Much as we might all want “everything” done in a desperate situation, an insurer is justified in denying coverage for treatment almost certain to be futile. But this is not that scenario. The drugs in question have been tested directly against Manny's cancer, and been shown to work where nothing else does. They are FDA approved, and would be covered if Manny happened to have a different, far more common cancer. Manny's cancer has no standard therapy at lower cost that “should” be tried instead.

This is not a hard call. Someone needs to fork over the money to cover this therapy, either the insurance company that clearly should, or the family that doesn't have it.

Let's fix both. Manny's family is accepting charitable contributions here; please help them help their son. I will do the same.

But really, we have all paid for this care already. We pay for our insurance so that it's there when we need it. Manny and his family now need exactly what we have been paying for all along: coverage of costly medical care a doctor deems essential, and potentially life-saving. There is nothing ambiguous about this scenario.

So, let's insist that Blue Cross Blue Shield of Florida remember its mission, and that human lives are the priority. Manny's care, whatever it costs, is unlikely to make too big a difference in the lives of company executives or shareholders; but it may make all the difference in the world to Manny life, and those who love him.

Let us, then, defend this young man, who could be, or could belong to, any of us. Please help Manny's family, share this column widely, and sign this petition. Manny's injury is already far more than any young person should be asked to bear. Let's tell Blue Cross Blue Shield of Florida that Manny's extended human family will not tolerate the addition of insult to it. His rare and terrible disease is, alas, the challenge this young man cannot avoid; rare indifference is a complication he certainly should be spared. Let us meet it with our collective, righteous indignation, and make it so.

Thank you.

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.

Labels: , , , ,


Post a Comment

Subscribe to Post Comments [Atom]

<< Home

This is a printer-friendly version of this page

Print this page  |  Close the preview




Contact ACP Internist

Send comments to ACP Internist staff at

Blog log

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.

Powered by Blogger

RSS feed