Allamakee County native instrumental in passage of Lymphedema Treatment Act legislation going into effect at start of the new year

by David M. Johnson

Lymphedema is a medical condition that is not readily known or recognized by the general public. Those who are afflicted by this condition know quite well what it is and can struggle through life trying to live with it.

The official definition of lymphedema is a condition in which swelling occurs in one or more of the extremities of a human body like arms or legs (and sometimes may occur in the chest wall, abdomen, neck and genitals) due to the impairment of the flow of the lymphatic system. The swelling is caused by an accumulation of protein-rich fluids that is usually drained through the body’s lymphatic system.

Lymphedema can be caused by the damage or removal of lymph nodes of the human body during cancer treatment. Some people are born with lymphedema but individuals can also be at risk after a surgery, burn trauma or radiation treatments for various cancers. It happens due to the blockage in the lymphatic system that is part of the body’s immune system.

The Journal of Clinical Oncology reported in its issue in January of 2009 that two out of five breast cancer patients will develop lymphedema within five years of surgery. It has been estimated that three to five million Americans suffer from lymphedema, including many who are undiagnosed, misdiagnosed or under-treated.

There is no known cure for lymphedema but it can be effectively treated. Compression therapy is the most critical component of treatment and without it patients are at an increased risk of complications including serious infections and disability.

COLLABORATING FOR A CAUSE
Because of the large number of people experiencing this illness, citizens have banded together and have petitioned their elective representatives, something that was difficult at first, to piece together legislation that assisted the general population with this affliction.

Starting January 1, 2024, the Lymphedema Treatment Act will improve insurance coverage for the medically necessary, doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment.

Because of this legislation, Medicare will provide greater coverage for the compression equipment necessary to combat lymphedema, expecting private insurers will follow the Medicare guidelines for coverage. Proposed details include both standard and custom fit compression garments. Iowa Senator Chuck Grassley was one of several members of Congress who were instrumental in ensuring that this act became law.

COUNTY NATIVE INSTRUMENTAL
A native of Allamakee County was one of those members of the advocacy group that was in the forefront in getting the law on the books to assist those diagnosed with Lymphedema. Now a resident of San Diego, CA, Judith (Gallagher) Vilbrandt grew up as part of the Allamakee County community for a large share of her life.

The former Judith Gallagher was born on a farm and raised with 10 siblings under the guidance and tutelage of their parents, Joe and Inez Gallagher, in rural Dorchester. She was raised in an environment where compassion for others inspired Judith to pursue a career in the medical field, specifically nursing.

Her education included St Mary’s School of Practical Nursing in Rochester, MN followed by an Associate of Science degree of nursing at Kirkwood Community College in Cedar Rapids. As a licensed practical nurse (LPN) and then a registered nurse (RN), Judith worked at the University of Iowa hospitals in the pediatrics and neonatology departments.

She continued her nursing career by traveling to California and working at Rady’s Children Hospital where she met her future husband, Brian, who was from Madison, WI. They married and remained in California where three children were raised. As the children grew and when the oldest entered college, Judith returned to work full time at Scripps Health in San Diego.

FIGHTING HER OWN BATTLE
Why did this busy wife, mother, and nurse turn to advocacy for a cause? In 2011 she was diagnosed with early stage breast cancer. As part of her treatment, she had both axillary sentinel nodes removed, which put her at risk for bilateral limb swelling known as “secondary lymphedema.”

The removal of bilateral axillary lymph nodes under the arm was part of the staging process to determine if there was any spread of the cancer cells. Lymphedema does not occur in every breast cancer patient, but the chance of having lymphedema after the ordeal was enough to concern Judith.

Judith immediately sought out a lymphedema therapist to gain as much knowledge on the subject, including such elements as self-massage and the appropriation of properly-fitted garments to wear anytime, ranging from when she did pilates or other upper body work to when she was flying on a plane. To have the properly fitted clothing required measuring of the arm’s circumference, to allow her the ability to exercise. The self-massage that is used to move fluid/swelling that may collect is recommended prior to the application of any such compression garments that may be part of the treatment process.

Compression therapy is the most critical component of treatment for lymphedema, without it there is an increased risk of infections and disability due to lymphatic dysfunction, a congenital malformation of the lymphatics. Judith further learned that lymph node removal for cancer treatment, injury to lymphatic vessels due to trauma or infection and venous insufficiency can cause overload of lymphatic vessels, which was something that concerned her.

Through self-education she learned that lymphedema can suddenly appear in a compromised limb after overuse /infection or slowly progress without visual cues until it requires compression to prevent worsening.  Judith needed to be able to combat this disease, as there is no cure, there are only the remedies.

BASED ON HER OWN EXPERIENCE
After being responsible with her own health she became aware of the Lymphedema Treatment Act (LTA) advocacy group led by Heather Ferguson, a mother to a little boy named Dylan, who as an infant was diagnosed with primary lymphedema shortly after birth. This new awareness was all it took for Judith to begin another journey in her life.

Judith’s dad was passionate in political causes and instilled this passion in his children. Judith took it to heart that an individual has a voice, but the collective is more powerful. Whether it was chores and tasks on or off the farm, the Gallagher family learned at an early age that it sometimes takes oneself and others to get things done.

Her own experience with lymphedema in 2016 inspired Judith to become a state advocate for her district in the San Diego area, joining an all-volunteer organization made up of parents, patients, providers, and other concerned citizens to write letters, make phone calls, and visit their elected representatives to advance legislation that will provide the financial support for patients through their own insurance and through Medicare and other federally provided services.

Judith’s insurance covered most of her compression supplies and visits to her therapist, but she was witnessing too many others who lacked the coverage to pay for any treatments and required materials for the lymphatic episodes they were experiencing. This is why it was important that laws be passed so others had the opportunity to make the necessary payments in coverage through their insurances or Medicare.

THE LEGISLATION
Legislation was introduced by Heather Ferguson, Founder and Executive Director of the Lymphedema Advocacy group as a parent of a child born with lymphedema. The bill was initially introduced in the state of North Carolina, where it was successfully passed.  Ferguson then set out to create legislation on the national level.

December 8, 2015, Iowa Senator Chuck Grassley joined a group of other senators and congressmen to introduce bipartisan legislation to improve Medicare coverage for lymphedema patients. The LTA not only had bipartisan support in Congress but was supported by the American Cancer Society, American Physical Therapy Society and Susan G. Komen for the Cure.

Judith was excited to see the bill passed and the feedback has been very positive, including hearing from therapists from the Waukon and Dubuque areas who treat patients who have needed  compression coverage.  The  Center for Medicare and Medicaid Services is at present gathering public comment, investigating if coverage is adequate to cover the number of compression garments needed and providing reasonable reimbursement rates to the companies fitting patients with the garments.

The Center for Medicare and Medicaid services (CMS) had been requesting public feedback on the proposed rules to gain some insight if the new law is accomplishing what it was set up for.  The public comments were to be submitted by August 29.

In addition, the U.S. Compression Alliance did conduct a survey on the measuring and fitting of compression garments. Direct comments to the CMS are strongly encouraged.

Vilbrandt is happy with the progress that has been made, but notes it was difficult to get this far. “It took over 12 years of dedicated and frequent - sometimes daily - dialogue from the LTA board to all of the volunteers with updates and details on how to best spread the word and keep the push on,” observed Judith.

She gives the credit to the board’s extremely organized process, instructions and guidance that made her advocacy efforts possible. Judith’s direct efforts with periodic phone calls and letters sent to both Congress and the California state senators, coupled with her and the many volunteers attending periodic town hall meetings, proved to make a difference.

These efforts are another example of grass root efforts going the extra mile to make something that was a wish into something real and positive. Besides what was done back home in California, there were trips made by Judith to this nation’s Capitol to make contact  in face-to-face meetings with congressional and senatorial aides. These meetings were held to describe what was needed, the accounts of how lymphedema demanded the compression remedies and how patients had to have the financial resolve, available only through legislation, to receive that support.

CHALLENGES AND RESULTS
As one might expect within the advocacy and legislative process, there is always push-back and/or the proverbial dragging of feet that will delay any legislative response. The individuals pushing for their government’s support had to also deal with the COVID-19 limitations that arose in the 2020 and 2021 time period. It was already an uphill fight to gain attention and support from elected officials, but the COVID drama certainly added another level of challenges to that battle.

What has the response been of the medical community and the insurance companies as the spotlight has been shown on the lymphedema issue? Judith responded that, “Although I have only obtained my compression garments through a certified compression fitter, I have seen lower prices that patients can pay online for compression garments, through reputable websites and some not regulated or possibly less reputable.”

She continued, “The billing that a company that does fitting in person is understandably more so this discrepancy will need to be worked out to continue to have services available to get the proper fit/measurement to avoid making the condition worse, which could happen with off-the-shelf products.”

Judith recommends “that patients be measured in person by a lymphedema specialist to be properly fitted for their compression. The cost for this service will need to be worked out with CMS.”

When asked if she thinks, even with legislation, that all parties like Medicare and the insurance companies will comply, Judith answered, “The LTA was passed into law as part of the Consolidated Appropriations Act of 2023, this was the 2022 year end omnibus legislative package.”

Judith continued by pointing out, “Coverage begins January 1, 2024 for Medicare recipients. Although the LTA only directly mandates Medicare coverage, it will indirectly benefit all patients as most, if not all, private insurances follow Medicare guidelines.”

She also directed attention to the fact that all patients who have a diagnosis of lymphedema, whether it is a primary (at birth) or secondary (for example due to cancer treatments, venous insufficiency, trauma, etc.), will qualify.

MORE TO BE DONE
Judith has observed there is a need for certified lymphedema therapists and there is room for RNs to be certified while working under the supervision of a physical therapist. This is something that Judith is exploring doing in the future as she notes the United States is severely understaffed with physical therapy/occupational therapy personnel who are knowledgeable and certified as lymphedema therapists.

Judith (Gallagher) Vilbrandt has come a long way in the past few years in both her own battle with lymphedema, and in her fight for a much broader cause. She not only learned about lymphedema, but has joined with others in promoting an avenue for patients experiencing this disease to be able to financially afford treatment.  This daunting experience has certainly had its rewards for the efforts made by the advocacy group.

Beyond just her efforts to improve financial support for lymphedema patients, Judith wants those individuals and their families to know that awareness and treatment can also help lessen the effects and improve hope and quality of life for all lymphedema patients. She offers the LTA website, https://lymphedematreatmentact.org/about-us/, as a source for additional information.

Judith has worked to continue to advance herself professionally, but she has also been instrumental in helping others when there was a glaring need. It’s been an impressive and rewarding journey for her from the hills of Hanover, on to California and into the halls of Congress.