New and long-time PH advocates share creative ways to engage others about the Supplemental Oxygen Access Reform Act. This important bill would make it easier for people to access the type of supplemental oxygen they need. 

In New Jersey, long-time advocate Nancy Zeppa, who leads PHA South Jersey Support Group, created SOAR-themed tent cards for a party. The cards had instructions and QR codes that linked to PHA’s SOAR Act message template. Zeppa asked her guests to send messages to their legislators as part of the party. She says talking about the SOAR Act has become part of her regular routine. 

“Any time I’m out in public and see someone wearing an oxygen cannula, I immediately go say hi to them and talk about oxygen access, and tell them about the SOAR Act,” says Zeppa, who was diagnosed with pulmonary arterial hypertension in 2019. “I feel like people still don’t know about this bill, so we need to keep getting the word out.” 

Miranda Riddle of Los Angeles also found a creative way to engage others in advocacy. For her birthday, she asked her friends and family to call their members of Congress to them to support of the SOAR Act. Riddle, who was diagnosed with PAH in 2021, created a call script, provided a link to quickly look up elected officials’ contact information, and explained the ease of calling legislators. 

Like Zeppa, Riddle has incorporated SOAR awareness into her everyday life. On a recent trip, she struck up conversation with someone in the airport who noticed her portable oxygen concentrator. She explained how the SOAR Act would make life easier for people like her who need supplemental oxygen. Riddle also talks about the bill at doctors’ appointments and has found that some medical professionals don’t know about the SOAR Act or the benefits for their patients. 

Colleen Connor of West Chester, Pennsylvania, recently put her energy and advocacy expertise into recruiting health care providers to advocate for the SOAR Act. Russell Hirsch, a pediatric cardiologist and director of cardiac catheterization and the pulmonary hypertension service at Cincinnati Children’s Hospital Medical Center, was the first to answer Connor’s call to action. He took her plea to heart to do more for patients and got the rest of his team on board.  

Melissa Magness, an advanced practice nurse at Cincinnati Children’s and chair of PHA’s PH Professional Network committee, worked with Connor to schedule a meeting with PH advocates and Rep. Greg Landsman (D-Ohio). Magness found three families of pediatric patients interested in advocating and brought together other staff members, including pediatric cardiologists Paul Critser and Kimberley Miles, clinical pharmacy specialist Meredith Oneil, and program management coordinator Montana Barnett.  

In the meeting, the families shared their children’s struggles, such as having to use heavy, inadequate tanks or portable oxygen concentrators, or running out of oxygen. One family discussed how they managed to source liquid oxygen, which is rarely available anywhere, and the difference it has made for their daughter. 

The physicians explained the critical need for respiratory therapist support in homes, and explained how insufficient oxygen therapy options can delay hospital discharges. They also discussed how oxygen enables other treatments to work effectively.  

Together, the group created a compelling case that combined human experience with medical expertise, and helped Landsman’s staff understand that the SOAR Act addresses human suffering that occurs when public policy prioritizes cost-cutting over patient care. 

“The personal stories and clinical expertise we shared brought the urgent reality of the oxygen access crisis directly to (Landsman’s) office’s attention in a way that reading the bill text simply cannot achieve,” Connor said. “I am hopeful that building relationships with our US representatives will make all the difference in gaining their support.”