How two very motivated women are helping patients fight their health insurers and get the care they need

To say Ariella Cohen Coleman, founder of the website I Am The Bottom Line, has been fighting insurance companies all her life would only be the slightest of overstatements.

Coleman was only 13 when her father was diagnosed with the colon cancer that would claim his life four years later. A constant of that time, in addition to numerous doctors' appointments, juggling of schedules, and relying on the kindness of friends, was her mother's fights with their insurance provider.

The insurer began sending notices to Coleman's father, telling him that life-extending treatments would not be covered because they were not part of his plan. But that was not true, as Coleman’s mother learned from taking the time to read every word of the family’s policy. They appealed the denials and eventually prevailed.  

Due largely to her mother's advocacy, Coleman's father received exemplary treatment from one of the premier cancer practices in the country – the Sloan Kettering Cancer Center, where he was a patient of a world-renowned colon cancer doctor.

"This is when I realized how incredibly fortunate my family had been," Coleman said. "Obviously, we had gone through something devastating, something you don't really recover from, but when my dad was diagnosed, he was basically given a couple of months to live. But we had access to the No. 1 colon cancer specialist in the world, and this gave us more time with him."

And if her father's illness wasn't enough, Coleman and her twin sister were experiencing symptoms of multiple conditions, one of which would later be diagnosed as Hypermobility Ehlers-Danlos Syndrome, a common but rarely diagnosed disease that weakens the body's collagen.

Again, her mother became the family’s health care advocate and fought to ensure her daughters received the care they needed. It took nearly a decade for doctors to make a diagnosis. For Coleman, these experiences were formative.

"(This) led me to realize how much you need to be an advocate in order to get what you are owed. It's not that you are getting something special out of it; you are getting exactly what you are owed under the plan that you are paying for."

That belief in advocacy led her to Drexel University's law school because of its emphasis on health care law, and to the law firm of Nelson Hardiman, whose practice focuses on health care and life sciences.

One day, as part of her routine, Coleman was scouring health care news for industry updates and was shocked by an article in STAT, a highly regarded health care publication.

United Healthcare, one of the largest insurers in the nation, was about to implement a change in policy regarding GI endoscopies, a procedure similar to a colonoscopy that diagnoses problems in the upper gastrointestinal tract. According to the article, beginning on June 1, 2023, "any United member seeking surveillance and diagnostic colonoscopies to detect cancer will first need approval from United–an increasingly burdensome health insurance industry practice known as prior authorization–or else have to pay out of pocket."

Prior authorization is the process in which insurance companies require health care providers to obtain pre-approval for certain procedures and medications before the plan will cover the cost. In many cases it can and does lead to harmful delays.

"Most consumers don't know how any of this stuff works," Coleman said. "It's not on anybody's radar, and it's very complicated. Insurance companies are able to get away with a lot because people don't know (changes like this are occurring), and patients don't know how to navigate the system. If you're not an insider, you may not understand that prior authorizations are increasingly used to delay or deny care. It's not about helping a patient. Denying or delaying care harms and often kills patients. That's unacceptable."

Outraged, Coleman decided to launch a Change.org petition opposing UnitedHealthcare’s plan policy change. She quickly began getting messages from people who have had important care denied or delayed. The general theme of the messages was, "What do I do?"

Coleman's response was to create I Am The Bottom Line, an online repository of vital information that is hard to find and in many cases obscured by insurers. 

"The insurance companies' bottom line is money," Coleman said. "My bottom line is patient health."

The I Am the Bottom Line website It's an antidote to the deceptive practices of the health insurance industry. Coleman provides a one-stop tutorial on industry terminology and practices and, most importantly, how to handle denials and other delay tactics. The section titled Knowledge Center in particular is a must-read: It provides a glossary of industry terms, explains the difference between in-network and out-of-network providers, offers a way to organize documents should you have to appeal or otherwise argue with an insurance company, and provides other resources and tips to get your care covered.

The site also offers steps to take if you run into prior authorization, information on filing claims and appeals, and tips on scrutinizing and negotiating medical bills.

"Don't ever assume they are on your side," Coleman said. "On multiple occasions, I have gotten notifications from my insurance company saying, 'This service is not covered because you were not a participant of this plan at the time of service,' and that wasn't true. I was absolutely covered. Don't ever assume they are telling the truth or have all the facts." 

Triage Cancer

Triage Cancer is another advocate that has taken on the task of educating consumers about the labyrinthine policies and procedures of insurance providers. 

A nonprofit organization and a member of the Lower Out-of-Pockets NOW Coalition, Triage Cancer was founded to help cancer patients navigate the system. Like I Am the Bottom Line, it offers free information about the legal and practical issues that arise after a cancer diagnosis. 

"We do this through free events, materials, and resources," said Monica Bryant, the founder of Triage Cancer. "We spend a lot of time talking to individuals who've been diagnosed, their caregivers, and also health care professionals and advocates." 

Triage Cancer helps cancer patients determine which health insurance options might be best suited to them and also how to understand their rights as employees (if their coverage is through an employer) and also how to interpret health plan coverage language. 

"So how does somebody work through treatment, take time off, or return to work?" Bryant said. "If someone does take time off from work, how do they replace their lost income?"

Triage Cancer also works to educate clients about denials for needed treatments and medication, which is not uncommon in cancer cases. Often, patients will come to Triage Cancer for help with treatment costs, which the organization does not provide. When Bryant finds out the patients are asking for help because their claims were denied, she helps walk them through the appeals process. 

"99% of denied claims never get appealed," Bryant said. "So, here we're in a situation where someone's coming for financial assistance, but they're not taking the middle step of making sure that the insurance company is paying what they're supposed to be paying."

Roughly half of the claims that insurance companies deny are reversed on appeal, which led Triage Cancer to create dedicated resources on this specific issue. 

Compounding the problems patients often face is a lack of knowledge by health care providers. A key example is when a patient has been denied a necessary service while in the prior authorization stage. If the service is urgent, an expedited appeal can be filed, and the patient should receive an answer within 72 hours. 

"In addition to the knowledge gap, there is a real practical challenge in that it's an additional burden being placed on health care providers who are already stretched for time in many situations," Bryant said. "It's easy for us to say 'get your health care team to help you with the appeal,' but that sometimes presents a challenge for patients who have providers who simply don’t have the capacity for this added workload."

The key to people navigating the health care landscape, Bryant said, is education. 

"I probably say on a weekly basis that there should be a class in high school on health insurance and finances," Bryant said. "This is no fault of a single person who made a 'bad choice.' This is complicated. And it's often hard to navigate."