Deborah D. Gordon has spent her career trying to level the playing field for healthcare consumers. She is co-founder of Umbra Health Advocacy, a marketplace for patient advocacy services, and co-director of the Alliance of Professional Health Advocates, the premiere membership organization for independent advocates. She is the author of "The Health Care Consumer's Manifesto: How to Get the Most for Your Money," based on consumer research she conducted as a senior fellow in the Harvard Kennedy School's Mossavar-Rahmani Center for Business and Government. Deb previously spent more than two decades in healthcare leadership roles, including chief marketing officer for a Massachusetts health plan and CEO of a health technology company. Deb is an Aspen Institute Health Innovators Fellow, an Eisenhower Fellow and a Boston Business Journal 40-under-40 honoree. Her contributions have appeared in JAMA Network Open, the Harvard Business Review blog, USA Today, RealClear Politics, The Hill and Managed Care Magazine. She earned a BA in bioethics from Brown University and an MBA with distinction from Harvard Business School.Full Bio
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Even after menopause, Gail Weiss had severe endometriosis that caused her excruciating pain. Weiss researched her options and found a surgeon out of state who performed specialized excision surgery. Her insurance company would only pay for a more standard surgery performed by an in-network doctor. The company claimed her local doctor could perform a comparable procedure. Weiss disagreed and got the more specialized surgery without insurance approval.
After the surgery was done, Weiss' local doctor reviewed 20 pages of operative notes and confirmed that he could never have performed the same surgery. She used her doctor's assessment to justify her appeal to the insurance company. Still, they didn't budge. In all, insurance paid approximately $1,300 — what they would have reimbursed if her own doctor had performed a more basic procedure.
Weiss wound up paying $3,500 up front for the $15,000 surgery. It took her five years to pay off the rest.
But, she got her money's worth.
Now 12 years later, at age 65, Weiss lives pain-free.
Weiss, who now volunteers with the Endometriosis Association, bumped into a common insurance practice: prior authorization (PA). To get a PA, patients must usually try first-line approaches — such as generic drugs or physical therapy — before insurers will pay for brand-name medication or surgery.
Though PAs are meant to ensure patients get care consistent with clinical guidelines, in reality PAs often create roadblocks. For example, in response to the opioid epidemic, people with chronic pain often can't get the medication they need. And people with hard-to-diagnose conditions face dead ends without clear treatment guidelines or objective PA criteria.
"Prior authorization delays access or creates a barrier to receiving care or medications … especially newer therapies," said Beth Battaglino, RN-C, CEO of HealthyWomen. "The HCP prescribes what the patient needs and then gets hit with a hurdle that takes more time for them to figure out how they can get the right treatment to the patient. When we think about patients who are living with their conditions having to wait another two weeks to a month to navigate this barrier, we can see that this is not acceptable. We need change to happen — to allow healthcare providers to make the decisions on treatment, not the insurance companies."
According to a 2017 survey conducted by the American Medical Association, 92% of physicians reported that prior authorizations cause delays in patient care. The same percentage reported that prior authorizations negatively impact patients' health outcomes. Most respondents (86%) reported that prior authorization requirements had increased burdens on their practices over the past five years.
Patients can appeal denials, sometimes through several levels of escalation. But appeals don't always succeed and the process itself can cause harm.
"[When] the request is denied, often deemed to be not medically necessary or experimental or investigational, it becomes another hurdle for the healthcare provider and causes delays in the patient receiving the care they need," Battaglino said.
Along the way, patients can find themselves fighting for their lives.
Not giving up
Julie Eberhardt is certain that fighting prior authorization denials saved her life, but not until after setting her back.
At the age of 28, following sudden-onset vision changes and numbness, she was hospitalized and diagnosed with multiple sclerosis (MS).
Eberhardt then had to grapple with her diagnosis and insurance bureaucracy simultaneously.
Because Eberhardt's disease was so severe, her doctor prescribed a drug that most MS patients don't start with. Insurers often require patients to try and fail on lower-cost medications before they'll approve coverage for more expensive drugs, a process often called step therapy. Her doctor fought the insurer, adamant that the first-line drug wouldn't work, and Eberhardt wrote a personal statement to humanize the appeal.
The appeal worked but took eight weeks, during which Eberhardt got worse. "I am 110% convinced … that insurance process caused [me to] relapse," she said. She wound up in the hospital and in yet another battle with her insurer.
"The insurance companies' game is just to make it so annoying that you pay [your bill] because you don't want to deal with it," Eberhardt said. She had no choice but to fight a $45,000 bill for her first hospitalization. Even with insurance, she couldn't afford to pay.
Eberhardt enlisted a family friend to help deal with the insurance company. Ironically, as a lawyer, Eberhardt had represented clients against insurers, but her own battle was too personal. The run-around felt like the company was telling her she wasn't important, and they didn't care that she was sick. "That's the last thing a sick person wants to hear. They want to know that someone's trying to help," she explained.
When Eberhardt later discovered she was eligible for an expensive stem-cell transplant, she decided to approach the insurer in a language she felt they would understand: dollars and cents. She didn't bother trying to emphasize her humanity.
On a $12,000-per-month medication, which insurance covered after Eberhardt paid approximately $5,000 to meet her deductible and out-of-pocket maximum, she might cost her insurance company millions of dollars over time. She argued they'd save money if the $175,000 transplant worked.
Her appeal worked. And so did the transplant. Now approaching the three-year anniversary of the procedure, her symptoms are nearly undetectable. Eberhardt estimates that her insurance company saved $492,000, more than double what they paid for her transplant.
When it comes to fighting prior authorization denials, determination pays off. "The key is to educate yourself about your health plan's prior authorization rules, make sure you know your rights and perhaps enlist someone to help you navigate the process. And be persistent," Battaglino said.
Being persistent did the trick for Eberhardt. She refused to give up. When her neurologist told her early on that she would likely be wheelchair-bound by age 35, she took it as a challenge to find alternative treatments. She has avoided that fate largely because she persisted — and prevailed — in her fight for insurance coverage.
This resource was created with support from AbbVie.