July 15, 2021
Dr. Francis Collins, Director, National Institutes of Health
Dr. James Madara, CEO and Executive Vice President, American Medical Association
Dear Drs. Collins and Madara:
I write to lend my voice in support of those thousands of men, women, and children, including myself, suffering from lymphedema.
My story is simple. I had a wide axillary excision for breast cancer in September 2014. I was proactive about the risk of lymphedema following such surgery and had some preventative physical therapy, including arm wrapping, early on, but three years later I started experiencing lymphedema symptoms in the affected extremity. I had pain and swelling in the entire arm.
I asked my HCPs and researched lymphedema treatment options and facilities or HCPs locally and much to my surprise, in a pretty major metropolitan area (Princeton, NJ) there were very few. I found a Certified Lymphedema massage specialist and physical therapist. I followed each from then until today, to several new locations, driving as much as 50 minutes each way for their care. When the PT changed her practice, I found another PT associated with our local hospital and have been going to her, as needed for a few years now.
Three times, when the pain and swelling have gotten to be too much to bear and to avoid taking pain killers for extended periods of time, I have had my arm wrapped. This is a technique where the affected extremity, in my case, the left arm, is literally mummified with special elasticized bandages from fingertips to armpit for 24 hours a day, 7 days a week, with several dressing changes weekly for as long as needed, for me, 1- 3 months per episode. I have endured several courses (each lasting 1-3 times/week for several months) of Complete Decongestive Therapy and Manual Lymph Drainage (massage techniques). These measures have kept the swelling down to mostly a tolerable level from a pain and function point of view. I have pain in my arm and axillary area all day every day. It is worse with heat and humidity. To control the pain and swelling and, hopefully prevent progression, I wear an arm compression garment 24/7. Two, actually, as I require one for daytime and one for nighttime compression. They are prescribed by my physical therapist, are custom made, and need to be periodically replaced. They are quite expensive - the daytime one is about $180 and the nighttime one was over $900. Medicare does not cover them. The compression sleeve makes the pain bearable and enables me to function most times without pain killers although I must be careful not to overstress it with too much weight or excessive exercise. I no longer carry luggage on a plane. On the rare occasions that I travel, I check even a small weekend bag on wheels.
I am not a scientist, mathematician, or doctor, but several articles I have read have pegged the incidence of breast cancer-related lymphedema at as many as 1 in 3 patients who have had axillary lymph node dissection. (https://www.nature.com/articles/s41523-021-00276-y). That computes to a very large number of people affected and does not even include those with lymphedema secondary to other surgeries or those having primary lymphedema. (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0114597).
The need for recognition, treatment, and cure is great. From a commercial perspective, the market is huge.
So I write for a few reasons:
- To put lymphedema on your radar screen.
- To encourage investment in clinical trials and other resources to research and improve treatments, especially non-surgical options, for this debilitating condition.
- To fund/encourage the development of tools/devices to detect and measure lymphedema both to assist in prevention and aid in treatment. (My therapist uses a tape measure to gauge progression!)
- To educate the health care community about this condition, especially prevention strategies.
- And to shine a bright public light on lymphedema through symposiums, research, clinical studies, scholarships, publications, presentations at medical conferences, and other ways to get the word out that this is a real condition that impacts the health and quality of life of thousands of people every single day.
We can send people to the moon, drones to Mars, transplant hearts and other organs, and develop and market a vaccine for Covid 19 in about a year. We can accomplish amazing things with the drive and resources to tackle them. Why not put lymphedema on this list, improve the lives of so many people and end their suffering?
A concerned lymphedema sufferer,