When my dad was diagnosed with chronic obstructive pulmonary disease (COPD) in 2004, I did what many caregivers do: I started searching for answers on my own. I took notes on everything I could find about the disease online and accompanied him to all his pulmonology appointments.

Then my dad had a serious exacerbation that forced him into early retirement. We were told he needed supplemental oxygen, and that’s when the reality of living with COPD really set in, including the day-to-day management and the fear that came with not knowing what to expect.

I can still remember the day my dad’s oxygen equipment showed up at our house. The portable tanks and a concentrator offered hope that he would live more independently. But during such a monumental moment for us, we had so many questions. We didn’t fully understand how to navigate life with a serious chronic disease.

Looking back, I wish my dad’s care team had offered us more training and information about how to use the equipment, about how quickly oxygen levels can fluctuate during simple activities like showering or eating a large meal, and even about other therapies like liquid oxygen, which is more concentrated, lightweight, and lasts longer.

The moment in that restaurant has always stuck with me. More than that, it made me realize how much our healthcare system is lacking in supporting individuals on supplemental oxygen and their caregivers.

That’s why I became an advocate, educator, and supporter of the Supplemental Oxygen Access Reform (SOAR) Act to carry forward my father’s legacy.

The SOAR Act is bipartisan legislation that would help individuals and families navigate oxygen therapy with more information and support. It would establish clear, patient-centered education and provide ongoing clinical oversight from respiratory therapists who are trained to guide families through their supplemental oxygen journey. That way patients and caregivers understand their equipment and know how to use it safely. It would also ensure that someone is available when questions arise.

The legislation also addresses access to different types of oxygen, including liquid oxygen that’s critical for patients with higher oxygen needs. My dad likely would have benefited from that option, as his oxygen levels would drop quickly even after the simplest of activities. Yet, we didn’t know liquid oxygen was even an option.

I know what caregivers and families are going through, and I want to share the lessons we learned to make their lives a little easier. With the bipartisan reforms of the SOAR Act, families like ours will be able to access information, support, and care with the right equipment at the right time.

Since my dad passed, we’ve made progress to raise awareness about COPD, but access to supplemental oxygen therapy and education hasn’t kept up. As a proud COPD Foundation Captain and patient advocate, I know we can do even better. That’s why I urge Senators Schumer and Gillibrand, and the NY delegation in the U.S. House, to support the SOAR Act.

Source: LI Press