By Denise Williams | News & Views

They converged on Washington, D.C., by the dozens.

Some crossed bridges from neighboring Maryland and Virginia; others hopped flights from as far away as Texas.

Many set foot on Capitol Hill for the very first time; others lost track of how many years they had flocked to the center of the country’s government.

Like-minded individuals from the same state or region teamed up for the mission; others padded fearlessly through the halls of Congress on their own.

AACVPR directors, affiliate presidents, and other leaders came out in full force, with the organization’s rank-and-file members joining them in swarms.

All shared a singular objective when they fanned out across the U.S. Senate and House of Representatives March 4-5, 2024: to gain traction on two key pieces of legislation with important implications for the cardiopulmonary rehabilitation (CR/PR) community.

Each advocate was there to make the case for H.R. 1406/S. 3021, the Sustainable Cardiopulmonary Rehabilitation Services in the Home Act, and for H.R. 955/S. 1849, the Sustaining Outpatient Services (SOS) Act. The former, specific to CR/PR, would allow participants to continue to receive treatment in their homes via real-time audio- and video-based telehealth services. Authorized during the COVID-19 pandemic under a public health emergency waiver, which expires at the end of 2024, the proposed legislation would make this temporary policy a permanent one. The SOS Act, meanwhile, would correct an unintended consequence of the Bipartisan Budget Act of 2015 that results in underpayment for outpatient CR/PR services under Medicare.

Both bills have been targeted in letter-writing campaigns and other drives, but AACVPR’s Day on the Hill (DOTH) event every March is the chance to make an organized, unified, and concerted push for action in the very heart of the American legislative system.

If you ask Karen LaFond, MSN, RN, CCRP, who’s been taking part in DOTH for about 10 years, visiting the hallowed halls of Congress is the ultimate experience “to exercise one’s right as a citizen, as a healthcare provider, and as a patient advocate.” In terms of advocacy, she finds nothing more empowering than sitting in the office of the elected official that represents her and connecting over the causes she wants to promote for her patients. Here’s what the 2024 experience looked like for her and a handful of other participants:

Vignette #1: Wayne Reynolds, Karen LaFond, Kristen Dempsey (Massachusetts):

Veterans pair up with a first-time participant

It’s just before 2:00 p.m. and, deep in the belly of the Rayburn Building, LaFond waits patiently in the corridor outside of Rep. Steven Lynch’s office. With her is Wayne Reynolds, RN, CCRP, FAACVPR, another veteran DOTH-goer, and newcomer Kristen Dempsey, MS, CCRP, who’s been spending the day learning the ropes from the two pros. The door opens, and the small group is ushered into the suite as a pair of staffers sort out where their respective meetings will take place. The AACVPR delegation lands in Lynch’s small but cozy office, comfortably appointed with a couple of small sofas and an armchair.

The Democrat, representing their home state of Massachusetts, has already co-sponsored both pieces of legislation; but the trio from AACVPR still requested an appointment. Their goal, LaFond explains, is for Lynch’s senior legislative assistant to lean on her counterparts in the Capitol and sway their bosses who have not yet signed off on the proposals.

The assistant closes the door to Lynch’s office and welcomes AACVPR back to the District of Columbia. Reynolds, who ruefully admits this could be his last DOTH run as he winds down his career, has established a certain rapport after many years of visiting the Hill. He greets the senior staffer warmly, inquiring sincerely about members of her family.

Once pleasantries have been exchanged, Reynolds turns the conversation to the growing problem of cardiopulmonary “deserts” forming in Massachusetts and across the nation. The phenomenon is taking place as programs are forced to move out of hospital space or even to shut down in order to make room for more lucrative operations. This, LaFond adds, despite forecasts of an 80% surge in the number of CR/PR patients in coming years, with more women and younger participants contributing to the influx. Dempsey soaks in the exchange of information, occasionally nodding in agreement as her mentors for the day reiterate the importance of H.R. 1406 and H.R. 955 in making CR/PR accessible to more people.

Lynch’s senior legislative assistant gets it and so, she promises, does the lawmaker for whom she works. He’s already “sold on it,” she affirms. The bigger issue, she suggests with a hint of frustration, is the slow pace at which the current Congress is moving. It is frustrating indeed, the AACVPR team acknowledges, but they’re grateful for the opportunity to have their voices heard once again. The two sides part ways with the same mutual respect and amity apparent at the start of the meeting.

Vignette #2: Sonny McNeilis (Missouri/Kansas):

Return participant and special guest offer real-world perspective

Although she is the sole member representing MOKSACVPR on the Hill this year, Sonny McNeilis, RN, BSN, CCRN, didn’t trek to the nation’s capital alone. The registered nurse is accompanied by a patient, whose re-telling of his own experience in CR introduced a unique angle to her advocacy approach. It just so happens that the patient is her husband, Sean, who also joined McNeilis in 2023 for their very first in-person DOTH event. This year, McNeilis set up 11 appointments over the two days, with Sean as her star witness. A healthy and active man before his cardiac event, he underwent cardiac stent placement in 2020.

“Sean briefly was able to highlight how the [CR] program allowed him professional guidance in developing an exercise program. In addition, he appreciated the one-on-one care to discuss the emotions that accompanied a cardiac event and how to navigate stress management,” McNeilis shares. “He was able to complete several sessions prior to returning to work and felt equipped on how to exercise safely and make modifications to risk factors.” 

That testimony, McNeilis believes, when layered with the knowledge and tips the couple say they gleaned from AACVPR’s briefing session and other preparatory materials, has been impactful. In particular, she is proud to share that Rep. Jake LaTurner (R-Kansas) agreed to co-sponsor H.R. 1406.

With her first two DOTH events under her belt, and feeling more informed than ever about the issues and increasingly comfortable with the process, she’s already looking forward to her third trip to Capitol Hill.

Vignette #3: Megan Hays (Alabama)

New AACVPR Director makes DOTH debut

Megan Hays, PhD, ABPP, FAACVPR, initially felt out of her element. Not only is she in her rookie year on the AACVPR Board, but she had also never attended DOTH in person before this March. And to be honest, she admits, she was never very politically inclined. Her viewpoint quickly changed after shadowing fellow Alabamian Todd Brown, MD, MSPH, FACC, FAHA, MAACVPR, the board’s Director at Large, on multiple meetings. The importance of the mission, and her role in it as a member of AACVPR’s leadership, became crystal clear to her. By the end of the two-day event, she is comfortable enough to tackle her final appointment, with the office of Sen. Tommy Tuberville (R-Alabama), solo.

In fact, although her face is unfamiliar to Tuberville’s legislative aide, that is likely the only clue that she hasn’t done this before. Dr. Hays speaks confidently and expertly about the importance of access to cardiopulmonary rehab as a life-saving service. As a psychology professional, she feels compelled to mention the U.S. Surgeon General’s declaration of an “epidemic of loneliness” and to point out the positive implications of CR/PR on anxiety, depression, and behavior change.

Broaching the subject of the SOS legislation specifically, Dr. Hays’ messaging around CR/PR deserts — “it’s a burden to drive 2-3 hours, three times a week, for care” — resonates with the staffer. From Alabama himself and with family still living there, he agrees how being limited to the hospital setting could be a significant problem in his home state, with its significant rural expanses. He’s equally empathetic when Dr. Hays explains how the other measure, S. 3021, can also address transportation and other barriers by providing permanent reimbursement for CR/PR telehealth conducted in the participant’s own home. This approach, necessitated by the COVID-19 pandemic, has been shown to be safe and just as effective as center-based rehab, she explains. The aide, a self-declared “fan” of telehealth, acknowledges it as a critical option for people who can’t get around easily.

Dr. Hays’ ask, laid out 20 minutes earlier as she introduced herself and settled into a chair in a small conference room, is for Sen. Tuberville to consider co-sponsoring S. 3021 and S. 1849. She leaves the meeting with some reassuring parting words from the aide, who says he “doesn’t see any issues” with getting the legislator on board.

And with that, she’s ready to board her flight home, her luggage packed with a new appreciation for the experience she’s just had. “I’m already seeing the value of the board being here,” she reflects. “We do have a role as leaders to model the way for others; so if we’re going to ask other people to come travel all the way to Washington, D.C., and spend the whole day — or two — on the Hill having all of these meetings, then we need to be willing — not only willing, but excited — to do that ourselves.” And that’s exactly how she now feels.

(Dr. Hays, pictured right, with Dr. Brown at an earlier appointment)