Philadelphia nurse and patient advocate to testify before the U.S. Department of Labor on fighting insurance denials

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Why is it so hard for patients to fight health insurance denials – and to access the health care services they need? Those are questions Philadelphia nurse and patient advocate Betty Long will testify about before a federal advisory council in Washington D.C. this week.

Over the last 38 years of working as an ICU nurse, a traveling consultant, a nursing supervisor and now a patient advocate, Long said she’s seen first-hand exactly how much trouble people have with navigating complex health care systems and programs.

“You need so much education to get through the health care system, so much education,” Long said. “And the insurance, that’s a minefield, too.”

Long will testify Thursday before the U.S. Department of Labor’s ERISA Advisory Council, which recommends policies and regulations that apply to private and employer-sponsored health insurance practices and programs.

The exact number of times that private health insurers and plans deny coverage for health care services is unknown, even to the federal government, as most of this data is not made public.

But nearly one in five people reported that they had recently experienced a denied claim in a 2023 KFF consumer survey.

Insurance denials can lead to delayed care or worsening health conditions, according to a July report by the Commonwealth Fund.

But many people don’t even understand why insurance denied their claim, how to appeal a denial or where to go for help, Long said.

“When the insurance company writes the denial letter to the patient or family, it’s not in language that anyone can understand – sometimes we don’t even understand it,” she said. “Insurance companies should have to write things in language that patients understand.”

It’s one of the many reasons why Long founded Guardian Nurses, a national nonprofit based in Flourtown, Pennsylvania, in 2003. The organization has a team of nurses and a social worker who provide in-person patient support and advocacy.

“I often say you wouldn’t enter the legal system without an attorney and you should not enter the health care system without an advocate,” Long said. “And who better to advocate for someone besides a nurse?”

Long said she and her team often help fight these insurance claims and denials. Sometimes, it’s just a matter of tracking down more information in the patient’s medical records and providing the insurance company with more details on why the procedure or medication is medically necessary.

Other times, they work to help avoid an insurance denial or lengthy authorization process altogether.

“We have the ability to know [a patient’s] insurance plan and we know the medication may not be on the formulary or that they will need prior authorization for a test that the doctor is going to order,” Long said. “There’s more information that we have to make the patient’s experience smoother.”

But not everyone has access to a nurse advocate, or someone in the family who works in the medical field and can offer their expertise with these things. That’s where patients and families fall through the cracks and become victims of a maze-like health care system.

In her testimony to the Federal Advisory Council, Long will recommend more transparency on insurance denials and why they happen. She said it’s also important to streamline the appeals process and make it easier for patients to challenge these denials.

Long will also suggest that the government create a nurse-led department within the U.S. Department of Labor to support patient complaints, and increase accountability for insurers who continuously deny claims for medical services that should reasonably be covered.

But most of all, Long said she wants more people to know that they have a right to challenge these denials and other types of decisions regarding their health care.

“I want people to feel more empowered, that it’s not just black and white,” Long said. “There are services whether it’s for-profit or whether it’s a community organization or a state organization that you can get help if you need help.”