The NSF Czar?

Based upon calls made to my office at Yale and incoming emails received at the NSF Registry address, there seems to be some misunderstanding about me, and my role with nephrogenic systemic fibrosis. In a word, if all of the misconceptions were true, I could be referred to as the NSF Czar. Let me explain why that is probably a misnomer in my case.

I am a dermatopathologist (DP). A DP is a physician who has trained in either dermatology or pathology primarily, with crossover training in the other subject. My primary training and board certification is in anatomic and clinical pathology, and my fellowship (specialty) training was in dermatopathology, for which I also obtained board certification. I have been a practicing full time DP at Yale school of medicine since 2001.

I am not a clinician. I do not have office hours. I do not see patients. My day to day work involves reviewing microscope slides prepared from skin biopsy specimens, and rendering diagnoses on these slides. The diagnoses are reported back to the clinician who performed the biopsy in the form of a "pathology report." I currently evaluate glass slides from 10-15,000 patients per year. The diagnoses I render range from melanoma to carcinoma to warts to dermatitis (and beyond).

During my fellowship training from 1999-2001, my mentor, Philip Leboit (another DP) suggested I investigate a number of unusual biopsy specimens that he had started receiving in 1997. This investigation led to the first description and definition of what eventually became known as Nephrogenic Systemic Fibrosis (NSF). I wrote the initial paper on NSF (then known as NFD), and was part of a team of investigators examining this "new" disorder.

I was not the first to see NSF (that honor goes to clinicians at Sharp Medical center in San Diego). I was not the first to see biopsies of NSF (that would be Dr. Leboit). I was part of a team that defined the disorder so that other clinicians and pathologists could confidently render the diagnosis.

I did form the NSF Registry, and have investigated new cases of NSF as I encountered them either in my own practice or because cases were sent to me in consultation. Because of our early work on the disease, many other physicians contacted me to learn more, and I shared my ideas and suspicions freely with them.

I was among the first people to realize that gadolinium containing contrast agents might be the cause of NSF. Both Dr. Grobner and I arrived at our conclusions independently, but Dr. Grobner was the first to publish his impression, and therefore earned that distinction. I was on the team that was the first to prove the presence of gadolinium (the element) in biopsy material from patients with NSF. This was an observation made with much trepidation. On one hand, it offered a logical and provable (and ultimately preventable) solution to the problem of NSF. On the other hand, it opened a very contentious debate that involved millions of dollars of litigation, attempts by attorneys and pharmaceutical companies to discredit my work (and the work of my colleagues), and allegations about moneys received.

I made a decision very early in this process to reject invitations to be an expert witness in the litigation. This, I felt, was the only way to remain objective in my position as an investigator. Many colleagues of mine chose to do this work.

I have twice addressed committees of the US FDA regarding my observations about NSF. Other than reimbursement for travel, I was not paid for attending. The committees heard my opinions, as well as the opinions of gadolinium contrast manufacturers. Most readers surely understand that these committees act on their own timetables. I did not have the ability to speed or slow the process of gadolinium investigation.

To quickly clarify additional misconceptions I have encountered: I am not a chemist; I do not investigate or develop MRI contrast agents; I am not involved with the approval process of these agents; I am not a radiologist; I do not professionally interpret MRI exams; I am not a kidney specialist; and, I do not treat patients for NSF.

Simply stated, I do what I can, within the limits of my knowledge, expertise, and resources, to understand NSF, how it occurs, how it can be prevented, and hopefully how it can be treated. I have used many techniques to get the word out and to foster discussion and dissemination of knowledge. I have spoken at numerous conferences in many medical disciplines throughout the world. I have written numerous academic papers, book chapters, webpages, emails, and -- blogs. I have cofounded a non-profit organization (The Global Fibrosis Foundation) dedicated to understanding fibrosis and raising and distributing money for promising research projects. I have directed the annual Yale Fibrosis Symposium to bring together fibrosis researchers from all over the world to facilitate interdisciplinary research into fibrosing disorders.

This is what I have done and continue to do. I hope interested readers of this post will support the work I, and others, are doing to better understand NSF and other fibrosing processes. If you are able, please consider joining GFF, or making a donation to the organization. If you cannot afford to donate money, please "like" the page in Facebook, or follow the organization in LinkedIn. Do what you can. There is a small army of dedicated folks working on the mysteries of NSF. There is much to be learned, but every reason to be confident.

Thanks for the topics--and send more!