Leveling the lymphedema landscape: AOTA's push for policy progress

• OT plays a critical role in lymphedema management, but Medicare’s implementation of the Lymphedema Treatment Act has created reimbursement challenges for measuring and fitting compression garments.
• AOTA and partner organizations continue to advocate with CMS to address payment issues that leave OT practitioners unpaid for the skilled services they provide.
• AOTA remains committed to improving access to properly fitted compression garments and securing fair reimbursement so clients can receive timely, expert care.

The Lymphedema Awareness Day offers an important moment to reflect on how far we have come and how far we still have to go to ensure that every person living with lymphedema receives the comprehensive, skilled care they deserve. For the American Occupational Therapy Association (AOTA), advocacy in the lymphedema space has long been a priority. Occupational therapy (OT) plays a central role in lymphedema treatment by maximizing participation in activities of daily living, with a focus on reducing edema and preventing complications associated with lymphedema. This includes identifying, measuring, fitting, and training clients in the safe and effective use of best-fit lymphedema compression garments.

Today, thanks to persistent, collaborative advocacy, meaningful progress has been made. The passage of the Lymphedema Treatment Act (LTA) at the end of 2022 marked a historic milestone for individuals living with lymphedema. Still, policy implementation has raised new challenges, particularly regarding reimbursement for measuring and fitting services provided by occupational therapy practitioners (OTPs).

A decade of determination

For more than a decade, AOTA has been a strong supporter of the LTA. Before its passage, Medicare did not cover compression garments and other commonly prescribed items central to managing lymphedema. This meant that many OT clients were left without access to medically necessary tools that prevent chronic inflammation, tissue damage, and worsening symptoms. Coverage varied widely across payers, with some covering select devices, some covering none at all, and most leaving clients to pay out of pocket.

Recognizing these barriers, lymphedema advocates spearheaded by the Lymphedema Advocacy Group began pushing for federal action. The LTA was first introduced in Congress in 2010 to address these inequities and expand access for beneficiaries. After years of advocacy by individuals living with lymphedema, bipartisan champions in Congress, AOTA, APTA, and other organizations, the bill was finally signed into law at the end of 2022. The LTA created a new Medicare benefit category for lymphedema compression garments and supplies, effective January 1, 2024.

Law becomes policy

Once the LTA was signed into law, the Centers for Medicare and Medicaid Services (CMS) was tasked with designing policies for implementing the new benefit. Ahead of policy development, CMS offered a listening session to hear from the lymphedema community on topics that could help inform the new policies. AOTA, alongside member subject-matter experts, actively participated in these sessions to share information on the use of compression garments in lymphedema management and the OTP’s role in proper selection, measurement, and fitting of those garments. Despite the expert feedback provided, when CMS released the proposed rule, its policy proposals did not adequately consider the impact on OT’s role in these services. Under the new benefit, compression garments were categorized as durable medical equipment (DME), which means that only Medicare-enrolled Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS) suppliers may bill for the garments and related supplies. In addition, broader DMEPOS policy bundles payment for the garment together with all associated services—including measuring and fitting.

For OTPs working in the lymphedema space, this created a major challenge. Before the LTA, OTPs could independently bill for measuring and fitting services, as those services weren’t part of a bundled payment under Medicare Part B. After the LTA, these services were suddenly considered part of the DMEPOS supplier’s reimbursement—even where the OTP was the provider performing the measuring, fitting, and adjustment services. This was especially challenging for clients in rural and medically underserved areas, where a DMEPOS supplier may not be available to measure and fit a compression garment for months. Lack of timely, appropriately fitted compression garments increases the risk of infection, permanent swelling, and irreversible tissue damage.

As part of the rulemaking public feedback process, AOTA collaborated with APTA and lymphedema advocacy partner groups representing patient advocates and other providers to submit strongly worded comments urging CMS to recognize the vital role that therapy practitioners have in lymphedema management and compression garment measuring and fitting by revising its approach to reimbursement to ensure that the providers delivering the service are the ones receiving payment.

When CMS released its finalized rule, it acknowledged OT’s role in lymphedema management but reaffirmed its proposed policy that all payment for measuring and fitting is bundled into the garment reimbursement; OTPs who are not DMEPOS suppliers would need to seek reimbursement for measuring and fitting services directly from the DMEPOS suppliers supplying the garment.

Driving change: collaborative advocacy continues

The final rule’s publication was not the end of AOTA’s advocacy efforts. AOTA and its advocacy partners have taken several important steps over the past two years, including ongoing meetings with CMS following the rule’s publication to discuss implementation challenges with DME contracting, requesting the development of an FAQ guidance document for their website tailored to therapy practitioners, and offering alternative payment proposals for CMS consideration. AOTA has also leveraged opportunities to present at national forums to highlight challenges OTPs continue to face, and, together with APTA, has been gathering data and real-world experiences on ongoing roadblocks to client access and fair reimbursement for clinician-led measuring and fitting services to inform ongoing advocacy better.

In advance of Lymphedema Awareness Day, AOTA met CMS again, joined by APTA, the Lymphedema Advocacy Group, the Alliance of Wound Care Stakeholders, and the Compression Dealers Alliance (which represents national DME suppliers). The purpose of this meeting was to address ongoing challenges and the real-world effects of CMS’s policy now that it has been in place for two years. The discussion centered on two key concerns: 1) therapy practitioners are performing the skilled work of measuring and fitting, yet all reimbursement continues to go exclusively to DMEPOS suppliers, and 2) this reimbursement framework is having a real-world impact on client access to timely, best-fit compression garments.

AOTA is also working with APTA and other partners to pursue longer-term strategies to improve reimbursement policies, remove barriers to care, and ensure that Medicare beneficiaries can access the specialized expertise that occupational therapy provides.

AOTA’s ongoing commitment

The passage of the Lymphedema Treatment Act was an extraordinary achievement, but it was not the finish line. For the millions living with lymphedema and the OTPs who support them, full access and fair reimbursement remain unfinished business.

On Lymphedema Awareness Day, AOTA reaffirms its commitment to champion the role of OT in lymphedema care, to advocate for payment structures that reflect the skilled work OTPs provide, and to work to enhance client access to properly measured and fitted compression garments, both in Medicare and with other payers.