Keep an eye out for my upcoming Wego Health blog post recap of #YWM2014!
Lymphedema Treatment Act Update
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!
Big Wheels Keep On Turning
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.
Hometown Advocacy: Coffee with Congressman Wenstrup
Rep. Brad Wenstrup
Fresh off my return from #YWM2013 in Phoenix, AZ and my second year of advocacy training, I had the opportunity to put my skills to work at a local event held by my US Representative, Brad Wenstrup. On August 27th, Rep Wenstrup hosted a “Coffee with Your Congressman” event here in Portsmouth. I have previously communicated with Wenstrup’s staff members about HR 2415 – Treat and Reduce Obesity Act and The Lymphedema Treatment Act, but I know it’s a very special honor to be able to speak directly with my congressman. Rep. Wenstrup is a Podiatrist and was very aware and knowledgeable of lymphedema, and of course obesity is a major health issue for our area.
Again, I want to thank Rep, Wenstrup and his staff for the outreach into our community!
You can be an advocate without leaving home! Check out the links below learn more about the bills and to contact your representatives and ask them to support these two very important pieces of legislation.
Join me and visit the OAC’s Legislative Action Center to urge Congress to support the Treat and Reduce Obesity Act of 2013.
Join me and visit the Lymphedema Treatment Act Legislative Action Center to urge Congress to support the Lymphedema Treatment Act.
Dancing for Dollars! Support me in the Walk from Obesity!
No tutu until I reach my fundraising goal of $1000!
If I reach my goal of $1000 in donations by the morning of the walk, August 18th! I will WALK IN MY SWIMSUIT (and tutu).
Featured on ObesityHelp
I am honored to be today’s featured article on ObesityHelp.com – Advocate: A Decade in the Making. I have been a member of ObesityHelp since 2003 and have attended 7 of their events. October 4th & 5th I will attending the ObesityHelp 2013 National Conference in Anaheim, CA.
ObesityHelp asked me to share my experience and struggle with Lymphedema and Lipedema. Including fighting for insurance coverage of needed treatments. Both conditions affect individuals struggling with obesity, including those seeking weight loss surgery. Many like myself, are not aware they have Lipedema until after having weight loss surgery and noticing that despite massive weight loss their legs are still abnormally large.
Two Bills, One Story
A journey of a thousand miles begins with a single step. – Chinese proverb
My journey began many years ago, the steps have been difficult at times but I kept moving forward. Now is the time to put the past decade of personal struggle into action in order to help others.
Currently there are two bills before Congress, or in the process or being introduced, to which I fully support and want to see passed into law.
H.R. 2415 Treat and Reduce Obesity Act of 2013 – On June 19, 2013, Senators Tom Carper (D-DE) and Lisa Murkowski (R-AK) and Representatives Bill Cassidy (R-LA) and Ron Kind (D-WI) introduced the Treat and Reduce Obesity Act of 2013. This legislation will provide Medicare recipients and their health care providers with meaningful tools to treat and reduce obesity by improving access to obesity screening and counseling services, and new prescription drugs for chronic weight management.
Lymphedema Treatment Act – The Lymphedema Diagnosis and Treatment Cost Saving Act will improve coverage for the treatment of lymphedema, thereby reducing health care costs while improving patient care and quality of life for millions of Americans with lymphedema.
Step 1: I have shared my personal story via Obesity Action Coalition and Lymphedema Treatment Act.
Step 2: I have contacted my Congressman, and Senators regarding both pieces of legislation. A few weeks ago I received a phone call from Rep. Wenstrup’s office in Washington, D.C. in response.
Step 3: This week my U.S. Representative Brad Wenstrup’s staff will be hosting a Traveling Help Desk in my area. I plan on attending to share my story in support of BOTH bills.
The power is in us to initiate change….please join me on the journey!
I Support The Lymphedema Treatment Act
In 2010 I shared My Story in support of The Lymphedema Treatment Act. The bill did not make it through the congressional process at that time and must be re-introduced. I am committed to using my newly acquired advocacy skills to help make this act a LAW.
WHY THIS LEGISLATION IS NEEDED:
- Lymphedema is a non-curable but treatable medical condition that results in an accumulation of lymph fluid swelling in parts of the body where lymphatic vessels and/or lymph nodes are damaged, nonfunctional or inadequate. Lymphedema affects an estimated 5-6 million Americans, with the majority of cases caused by cancer treatment.
- Untreated, or under-treated, lymphedema is progressive and leads to increased morbidity. Complete Decongestive Therapy (CDT) is the gold standard and only known course of treatment for lymphedema. CDT is a multi-modal treatment that is only effective when used in its entirety.
- Medicare currently covers all but the most critical component, the medically necessary compression supplies used daily in lymphedema treatment, citing they do not fit under any existing benefit category. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
WHAT THIS LEGISLATION WILL DO:
Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow.
Specific goals of the Act are:
- Provide comprehensive lymphedema treatment coverage, according to current medical treatment standards;
- Enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (including gradient compression garments, bandages, and other compression devices);
- Allow for new treatment modalities to be considered for coverage as they become available and are approved;
- Reduce the total healthcare costs associated with this disease by decreasing the incidence of complications, co-morbidities and disabilities resulting from this medical condition.
In case you need a refresher on how the process works:
A quick one-page reference on the Lymphedema Treatment Act. To get involved visit: http://lymphedematreatmentact.org/
Lymphedema Treatment Bill
I received an e-mail this week from the National Lymphedema Network announcing that legislation regarding Lymphdema treatment had been introduced in Congress. As I read the e-mail I began to cry, because finally my struggle was being addressed. There were others out there who understood, and better yet there were people in a position of power who were willing to make change happen.
My story:
I was diagnosed with bilateral lower extremity lymphedema in December 2001. From 2002-2004, I received manual lymph therapy and compression wrapping to reduce the swelling of my legs. During this same time I was hospitalized approximately 8 times for cellulitis, had a medi-port placed for IV antibiotics, and had weeks of home health care three different times. The cost of this care was hundreds of thousands of dollars. During most of this time I was covered by Ohio Medicaid. However, my last major infection in September 2004, which was accompanied with a deep vein thrombosis and required two weeks in the hospital, was covered by United Healthcare, which I had through my new employer.
In October 2004, I began three months of manual lymph therapy and compression wrapping. I was limited to 20 sessions of occupational therapy during my plan year. However, January 1st a new year began and I would have a new set of 20 sessions. There was a two week gap. Compression wrapping requires continued wrapping to avoid any set-backs and flare ups. Two weeks without being wrapped would undo the previous 2 1/2 months of progress. And yet, the insurance company refused to authorize the additional visits for the plan year.
After I recovered from the set back from the gap in care, I reached a point where custom fitted compression garments were ordered. Once the compression therapy reduced the size of my legs as much as possible, the compression garments would help maintain the size of my legs by reducing the daily swelling. Because of the odd shape of my legs, the garments had to be custom fitted, so the correct level of compression was provided. The average cost of a full pair of garments is $1000. Typically, garments need replaced every 6 months.
Now compared to the hundreds of thousands of dollars I previously racked up in medical bills, one would think $2000 is a much better deal. Especially given that I would have some responsibility to pay a portion of the $2000 through my co-pay or deductible for Durable Medical Equipment under my insurance plan. In the business sense, garments are a much better option than numerous hospital stays and costly medication for cellulitis.
And yet, every year I have to fight my insurance company to get my compression garments covered.
This bill is very much needed. It’s a shame it will take an act of Congress to make the industry understand that prevention of complications is less expensive than treating the complication. I know as a patient, no matter how uncomfortable compression garments are to wear some days, I’d much rather wear my garments than to suffer a case of painful cellultis.
Proof that treatment works!!!
From the NLN e-mail:
“I encourage you to contact your local Representatives and Senators. Urge them to co-sponsor H.R. 4662 and to introduce a similar bill in the Senate. Stress the fact that this bill is projected to save hundreds of millions of dollars every year in avoidance of costs of treating preventable lymphedema-related cellulitis. This is a quality of care issue affecting insured patients and is complementary to healthcare access issues. Time is of the essence for you who have had difficulty in obtaining proper treatment for your LE. We may never have a better opportunity!
You may find your Congressional representatives by going to http://www.contactingthecongress.org and entering your address.”