I don’t have lymphedema (LE). However, every day I hear stories from those who do. They live across the United States in big cities and rural towns, and they live across the globe in rich and poor countries alike. On one hand, I grieve over the severity of this disfiguring, progressive, and debilitating disease. On the other, I am mystified at how the world has succeeded at turning a blind eye.
There are many reasons why LE has been successfully kept in the shadows. However, we might find some insight into these reasons in Elinor Cleghorn’s new book, Unwell Women: Misdiagnosis and Myth in a Man-Made World. Cleghorn makes a case for the history of Western medicine’s mistreatment of women whereby a woman’s pain was often attributed to “hysteria.” Throughout the book, there are examples of women at the mercy of doctors who underplayed their suffering or simply failed to address their own lack of knowledge.
Cleghorn is no stranger to this subject. She has lupus, a disease that disproportionately affects women. In her book, she details her seven-year journey seeking a diagnosis for her chronic pain. She writes about being brushed off by doctors who prescribed Advil while suggesting hormones as the likely cause of her suffering.
I have lost count of the times I have heard this story from women with LE. Secondary (acquired) LE affects both women and men. However, research demonstrates that many of the medical conditions that predispose a person to LE exclusively affect women. Women are also more likely to be affected by primary LE (1) (2). If, as Cleghorn states, there is a medical bias when it comes to diseases affecting women, then only the unrelenting advocacy of women can dismantle this bias.
At LE&RN, we lobby for change. We have appealed to Dr. James Madara, CEO and Executive Vice President of the American Medical Association (AMA), and have encouraged LE/LD advocates to write to him directly with their stories and calls for action. You can read dozens of these letters on the LE&RN website. To date, LE&RN has received no response from the AMA, nor have we heard of any response being sent to those writing these letters.
In January, LE&RN successfully appealed to Congress on behalf of those with lymphatic diseases (LD). The result was that the FY2021 Appropriations Bill includes a call for the National Institutes of Health (NIH) to establish a National Commission on Lymphatic Diseases. This is in response to no meaningful increase in lymphatic and lymphedema research funding in the last decade.
Dr. Francis Collins, Director of NIH, responded to Congress saying, “NIH does not currently track the annual support level for lymphatic research and cannot provide an estimate of funding for the past five years.” LE&RN’s research of NIH funding estimates that NIH expends approximately $25M a year on lymphatic-related research, with approximately $5M specifically targeted for lymphedema research. Dr. Collin’s response to Congress states that enough is already being done by the Trans-NIH Lymphatic Committee. So, what has changed in the last 20 years?
In 2002, there were no pharmaceuticals available for the treatment of lymphedema. In 2021, there are still no approved pharmaceuticals and there is no major pharma company researching such drugs.
In 2002, the mainstay treatments of LE were manual lymph drainage and use of compression garments—neither of which were sufficiently researched for efficacy and both lacking sufficient insurance coverage. In 2021, these remain mainstay treatments, research is still lacking, and insurance coverage remains an issue.
By 2021, surgeries have emerged in the treatment of lymphedema. However, as was stated by over 50 surgeons in a letter delivered to Congress in 2020, there is too little research guiding surgeons on best practices.
LE&RN is your advocate, and we can be part of the dialogue leading to change. However, change will only occur when you collectively decide you no longer accept the status quo and instead make your demands known. The Road to Independence from LE rests with you.
If you wish to express your opinions to those who are empowered to effect change, you can write to them directly at the emails provided below. (LE&RN will be pleased to publish your letters if you copy us on your correspondence at email@example.com).
I wish you all a happy and fruitful Independence Day.
President & CEO, LE&RN