The Orphan Patient
David J Elpern MD
Williamstown, MA, USA
on April 2, 2006
Dermatologist, The Skin Clinic, Williamstown, MA, USA
On March 2, 2006, Walter Shelley gave a talk entitled “Preserving the Passion for Dermatology” at the annual Dermanitis Day conference in San Francisco, USA. After 60 years as a physician, he is eminently qualified to address this topic. One of the points he made was to “always have a project.” An enduring passion of his, dating back many decades, has been adopting “orphan patients” (OP). This led us to the realization that VGRD and Anak VGRD exist for this very purpose. Here are some thoughts about the orphan patient. As you peruse the cases presented on these two web sites, it might be helpful to think of many of our cases as OPs. Last week’s patient, the three year-old girl with the giant congenital melanocytic nevus is such a patient. Her problem is just too complicated and the outcome too uncertain for most busy practitioners. Yet, she needs someone to be there, someone her parents and she can trust.
If you google “orphan patient”, the third and sixth hits are to publications by Dorinda and Walter Shelley.
#3. The orphan patient. (1)
#6. Consultations in Dermatology - Cambridge University
In this area, as in so many others, the Shelleys lead the pack.
There are orphan drugs, orphan diseases and orphan patients. Orphan patients (OP ) come in many categories. The following is an incomplete list.
1. A common definition is a patient without a doctor. In Canada, this individual is conceived of as a patient without a primary care provider. The situation in the U.S. is more often more ominous.
2. The Shelleys in their 1988 letter to the NEJM define the OP as an individual “with a unique, inchoate, baffling and often disabling disease and yet clearly not discernable in the medical literature.” (1) A great example appeared the other day in the New York Times, March 21, 2006. This was a short piece by a patient with chronic meningococcemia. Specialists missed it, but a dogged GP who sat down and invested time in the patient made the diagnosis. (I’ll send this piece to anyone who wants to read it)
3. Patients who cannot (for any of a number of reasons) get the care they need or want. This might be due to no health insurance or poor health care coverage. In the States, many physicians don’t see patients with Medicaid because reimbursement is poor. Illegal immigrants are frequently orphan patients.
4. Patients who live in remote areas where specialty care is spotty or nonexistent.
5. Those individuals who have disorders that are too complicated or time-consuming for a busy doctor. Dr. Foong’s patient presented on March 21 is a good example.
We have left out some categories. Please supply them if know of others we overlooked.
Over the past five years a number of us have worked on Virtual Grand Rounds in Dermatology. (3) This was conceived of as a collegial meeting ground for dermatologists who might not have the luxury of being associated with a medical center or for those academics who are willing to share their expertise with far-flung cyber-colleagues. It is a place where difficult patients can be presented for help with diagnosis and treatment. We aspire to emulate Chaucer’s student: “And gladlye wolde he lerne and gladlye teche.”
VGRD (and the more recently created Anak-VGRD) are vehicles to help the OP (3,4). Their case histories can be presented on either of these sites and they may benefit from the opinions of many seasoned dermatologists from around the world. Until hearing Dr. Shelley address this topic we did not realize that perhaps one of VGRD’s most notable properties could be its role in helping these individuals.
Please join us in adopting orphan patients. “Clinical medicine thrives on the study of the unique patient, as well as the study of DNA. Don’t we in medicine need these orphans as much as they need us?”(2)
1. Shelley WB, Shelley ED. The Orphan Patient. NEJM 1988; 318:646