Check out this great infographic from Lymphedema Products that explains the importance of compression and how garments work.
I am overjoyed to see that my congressman, US Representative Brad Wenstrup signed on in support of the Lymphedema Treatment Act. Last summer I met with Rep. Wenstrup’s staff member, and then I had the opportunity to speak with Rep Wenstrup personally during a “Coffee with Your Congressman” event. As a podiatrist, Dr. Wenstrup was familiar with lymphedema and was very receptive to my story and my request for his support of the bill.
It feels very empowering to see the results of my advocacy efforts, I have shared my story on the Lymphedema Treatment Act website and utilized the Legislative Action Center to make initial contact with my representatives. However, this is just one small step in getting this legislation passed. Please you if have not already done so, contact your representative and ask for their support of HR 3877 Lymphedema Treatment Act.
Thank you Congressman Wenstrup!
National Health Blog Post Month Day 7: Mary Poppins Carpet Bag
Write about what’s in your bag/purse/backpack every day- and why!
I never leave home without my garment glue! Compression garments are the key to managing the swelling from lymphedema and lipedema. In order to keep my compression garments in place and prevent sliding and painful bunching I use Jobst Skin Adhesive. I do not keep it in my purse because the bottle tends to get sticky, so there are random bottles everywhere. I keep a bottle in my car. I keep a spare bottle in every piece of luggage. It is a 2oz bottle so it is allowed in carry-on luggage and actually is a MUST when I fly because I often need to reapply during layovers. I also keep a bottle at my boyfriends house. Unlike most items that you can run to Walgreens to buy, I have not had the same luck with this product. And I have to have Jobst ItStays, not another brand as my skin is sensitive and many adhesives leave blisters. I have used this product for years and never had major issues. I order it by the dozen from Bsn Jobst It Stays Roll-On Body Adhesive-2oz (59ml) Bottle,12/Case, but it is available in IT Stays Body Adhesive 2 oz.. Also, this item is Flexible Spending eligible, so if you have an FSA account you can submit your receipt for reimbursement.
National Health Blog Post Month Day 4 – Training Wheels
Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).
My training wheel moment involves health insurance, of course! It was very much like learning to ride a bike, I even had someone there guiding me, holding the bike seat to make sure I didn’t tip over.
When I was initially diagnosed with lymphedema I was on Medicaid. While it took a couple months for my initial treatment and compression pump to be approved, I never encountered a coverage issue or claim denial. I received unlimited physical therapy sessions, and was in the process of being fitted for compression garments when I got my first REAL JOB with REAL INSURANCE. And then came my first coverage issue and the experience that started me on my journey to advocacy.
Due to the size and shape of my legs I needed custom fitted compression garments, as it is important that the compression is correctly distributed over the limb. Jobst, the manufacturer of the garments my doctor and therapist recommended requires vendors and fitters (those who would take the measurements) be trained and certified to be sure the garments are fitted and ordered correctly. The average price for a pair of garments is $300 so it is very important they are made correctly, and since I needed two pair (one to wear, as the other is washed/dry) it was important that insurance helped cover the expense. After all, by wearing compression garments I was saving the insurance company the expense of physical therapy and hospitalization due to cellulitis. I was unable to find a DME (durable medical equipment) provider in my insurance network who was certified to handle my garment order but thankfully the vendor I did find guided me through the process to request network gap coverage.
I wish I could remember the employee’s name at Luna Medical, as I owe her a huge THANK YOU! She very easily could have just told me I would have to pay out of network for my garments. I would have known no different, as do most patients. Instead, she explained that since there was no in-network provider within a 50 mile radius of my home my insurance company had to cover an out-of-network vendor at in-network coverage level. She coached me on what to ask for and what to say when I spoke to my insurance company. To prove there was no vendor in network, I called every DME provider within 50 miles and documented whether they sold compression garments, and if they did I would document who I spoke with and verify they were not a custom Jobst certified vendor. It took several phone calls, and finally the insurance company said they needed to speak with my physician. I happened to have an appointment with her the next day so I asked her if she would call them. Knowing there would probably be hold time with any insurance call, my doctor told her staff to take me into her office to call the insurance and once there was a representative on the phone to get her. To my surprise, after reviewing the information I had already provided the supervisor only asked ME a few questions and then approved my request. She said she didn’t need to speak to my physician at all, she already had her signed prescription stating medical necessity.
The training wheels were OFF…and I never looked back!
I followed the same process with the next 3 insurance companies I had and successfully obtained approval for my compression garments. I transferred those skills into reading coverage documents, researching vendors and providers and overall navigating health insurance. I often help friends and family with their coverage questions. The experience managing my own health insurance coverage led me to a new career. I earned my BS in Health Services Administration and I am currently pursing a Masters of Science in Health Law.
Although I have been successful in obtaining coverage for most of my lymphedema and lipedema treatment needs, there are still obstacles that block patients from getting the care they need and deserve. That is why I share my story to advocate for the passage of the Lymphedema Treatment Act.