Dear LE&RN Supporting Members, and Allies in the Fight Against LE and LD,
Along with other LE&RN representatives, I had the honor of meeting with the CEO of the American Medical Association (AMA), Dr. James Madara, in 2016. As we discussed expanding lymphatic disease education among medical practitioners, he astutely recognized that we have a marketing problem. Looking at Dr. Stanley Rockson (pictured right), who also attended that meeting on behalf of LE&RN, Dr. Madara encouraged the Founding Chair of LE&RN's Medical and Scientific Advisory Council to be the spokesperson who could address this topic with the broader medical community.
Dr. Rockson took up this charge, writing a trenchant, no-holds-barred editorial: “Lymphatic Medicine: Paradoxically and Unnecessarily Ignored.” Doctors were the target audience for the piece and so it was submitted to the Journal of the American Medical Association (JAMA). Within a few hours, JAMA had declined the opportunity to publish.
LE&RN intervened, attempting to make JAMA editors aware of a dire situation in which too many doctors across the country were failing patients with lymphatic diseases. We urged the publication to reconsider. However, JAMA’s editors maintained that the “tone” of the piece was not appropriate.
Just a few weeks after this disappointment, a patient entered Dr. Rockson’s office. She had had a radical hysterectomy and now had LE in both legs. She had just seen another doctor who said there was no such thing as lymphedema and advised her to walk on her hands with her legs in the air.
Question: what is the appropriate tone whereby this doctor should be informed of his malfeasance? As a call center for patient inquiries, I know that hearing similar disheartening stories occurs daily at LE&RN. We live in an age where even minor infractions gain attention in the media as advocates espouse “outrage.” Where is our outrage?
Indeed, there are many marvelous physicians who dedicate their lives to state-of-the-art care in lymphatic treatment. However, they are a minority. How many people with lymphatic diseases must go undiagnosed for us to find our voice? How many must suffer inappropriate treatments that inflict irreversible damage? How many people must undergo cancer treatment without any consideration or understanding that a lifetime of lymphedema could follow? How much psychosocial bruising is enough when people are told their disease does not merit concern relative to other diseases?
Thanks to Mary Ann Liebert Publishers, Dr. Rockson’s article, “Lymphatic Medicine: Paradoxically and Unnecessarily Ignored,” has been published in LE&RN’s journal, Lymphatic Research and Biology, and has been made available to the public.
Read it online, download it here, and share it widely. Then, find your outrage and join this fight. If not for yourself, then for the sake of the millions of your brothers and sisters around the world who are suffering from lymphatic diseases.
2018 is LE&RN’s 20th Anniversary. Let’s make it a year of dramatic change.
Along with other LE&RN representatives, I had the honor of meeting with the CEO of the American Medical Association (AMA), Dr. James Madara, in 2016. As we discussed expanding lymphatic disease education among medical practitioners, he astutely recognized that we have a marketing problem. Looking at Dr. Stanley Rockson (pictured right), who also attended that meeting on behalf of LE&RN, Dr. Madara encouraged the Founding Chair of LE&RN's Medical and Scientific Advisory Council to be the spokesperson who could address this topic with the broader medical community.