The Unsung Heroes of Health Insurance

By Andrea Brown
July 8, 2025 | VOLUME 3, ISSUE 2

The complex landscape of health care and insurance presents significant barriers for patients, particularly those facing pulmonary and critical care conditions. With an overwhelming system of premiums, co-pays, denials, and limited access to essential treatments, many patients find themselves in crisis.

However, advocacy organizations like the Patient Advocate Foundation (PAF) and the Pulmonary Hypertension Association (PHA) have emerged as champions, helping to bridge the gap and make care more accessible to these patients.

Addressing the challenges of insurance navigation

The PAF works to enhance access to care and affordability for individuals facing health crises. Their mission is clear: to assist anyone in the country who has a diagnosis and is receiving care, with a focus on helping patients overcome financial and administrative barriers.

“We directly help patients understand how insurance works and even assist in picking out better insurance plans during open enrollment,” said Caitlin Donovan, Senior Director of the PAF.

Caitlin Donovan
Senior Director
Patient Advocate Foundation

“We offer resources like form letters to help patients navigate the appeal and denial processes, which are crucial when they are denied coverage or face high premiums, deductibles, and co-pays,” she said.

The PAF also goes beyond insurance assistance, utilizing every available resource to support patients in need. “We help patients apply for [the Supplemental Nutrition Assistance Program (SNAP)], rental assistance, transportation aid—anything that can reduce their financial burden. If a patient doesn’t have to use their money for rent, they can redirect those funds toward their medical bills. We think outside the box because every little bit helps,” Donovan said.

Another organization dedicated to the patients it serves, PHA focuses on improving the lives of those with pulmonary hypertension (PH), a rare and often misunderstood condition. They work with not only patients but also health care professionals, fostering collaboration across the medical community to ensure that individuals receive timely and effective care.

“We believe health care should be driven by clinical judgment and the patient-doctor relationship,” said Katie Kroner, MSW, Vice President of Advocacy and Patient Engagement at PHA.

Katie Kroner, MSW
Vice President of Advocacy and Patient Engagement
Pulmonary Hypertension Association

“However, barriers often emerge when patients cannot afford their prescribed medications due to high out-of-pocket costs. In those cases, we direct patients to our financial aid page, walking through the available resources and guiding them every step of the way. If they need more in-depth assistance, especially when it comes to insurance questions and access to grants, we’ll direct them to organizations like the PAF for additional support.”

Overcoming financial and administrative barriers

Financial strain is one of the most common obstacles patients face in securing necessary care. For many, the cost of health care—whether it’s insurance premiums, co-pays, or deductibles—becomes a barrier to receiving vital treatments. The PAF helps patients understand and navigate these financial challenges, offering guidance and resources.

“We work with patients to identify potential financial assistance programs, and we can even help them apply for grants or co-pay assistance to alleviate the financial burden,” Donovan said. “We also provide direct support by contacting insurance companies and helping patients complete necessary paperwork.”

For PHA, financial barriers are closely tied to the complexity of the insurance system. Patients with PH may have insurance coverage, but the costs associated with their lifesaving medications are often still too high.

“We’ve seen firsthand how much stress these financial burdens can cause,” Kroner said. “There are instances when patients have been unable to pay their co-pays, which leads to a disruption in their treatment regimen. This can be incredibly dangerous, not to mention stressful, for patients with [PH].”

That’s why it’s so important for patients with PH to go to an accredited center, emphasized Kroner. “Our nurse coordinators really educate themselves and talk to each other about what resources are out there. If you’re coming to a PHA-accredited center, someone on your care team will have their pulse on what’s available to you.”

Building collaborative partnerships for greater impact

One of the strengths of both organizations is their ability to collaborate and connect patients to the right resources. While PHA provides expert advice on PH, they rely on partners like the PAF to help with the more intricate details of navigating insurance and financial assistance.

“We don’t have the expertise to navigate every state’s insurance program or provide financial assistance directly,” Kroner said. “That’s why partnering with organizations like the PAF is so essential. They offer the financial support and guidance that we can’t.”

The collaboration between the two groups ensures that patients are not left alone to struggle with the complexities of health care and insurance.

Sharing success stories

The impact of these advocacy efforts is evident in the numerous success stories shared by both organizations.

“Our case managers have worked for insurance companies and have social work degrees,” Donovan said. “They know what they’re doing and are highly effective in helping patients access care. We’ve helped people who were on the brink of losing everything—like a man who had $30,000 in medical debt and had gone so far as writing his suicide note. We were able to wipe that out and help him get back on track. To this day, he and his partner still write us thank you notes."

Another PAF case manager’s involvement in securing necessary treatments for a patient with cancer and without housing during a Congressional event demonstrated how direct intervention can make a world of difference.

Similarly, PHA’s collaboration with other patient advocacy groups has been instrumental in addressing specific challenges faced by patients who use oxygen therapy concentrators. For example, patients attempting to fly with portable oxygen concentrators have been turned away at the gate, despite having used the same machine and battery on previous flights. This disruption has significantly affected patients’ ability to travel for work and family commitments, and it raises concerns about access to medically necessary travel. “Through our partnerships, we were able to secure a legislative meeting to bring transparency to this issue,” Kroner said.

The future of advocacy

As the health care landscape continues to change, both the PAF and PHA are preparing for the challenges ahead. With proposed cuts to programs like Medicaid and SNAP, both organizations are concerned about the impact these changes may have on patients already struggling with access to care.

“We’ve seen how much the system can break down when resources are reduced,” Donovan said. “We are prepared to advocate for the patient community and push back against cuts to vital programs. Without these resources, many patients will not be able to access the care they need.”