Sandra Johnson started feeling short of breath a few years ago, and sometimes it dramatically limited what she could do.
"Getting up to walk from my bedroom to the bathroom, I will be so out of breath that I would have to just sit... to prepare myself to get up to take a shower," says Johnson, who lives in Plainfield, New Jersey.
She has severe persistent asthma, treated by an injectable drug. Her physician had to get approval from her insurance company to prescribe the drug, initially. And then a few months ago, her insurance provider needed prior authorization again, for the same treatment. This time, the answer was no. Johnson has been without the medicine for months.
Many patients have had that experience. Doctors have long complained about how the prior authorization process gets in the way of delivering care to patients. Insurance companies say the point is to make sure doctors prescribe the most cost effective treatments.
States are responding to complaints from physicians and patients, and pursuing legislation to try to set some ground rules on prior authorization. New Jersey was the second state to pass this kind of legislation after Washington state. D.C. adopted a similar law late last year, and more than two dozen states have similar bills going through the legislative process.
The drug Johnson had been on made a big difference in her quality of life. She says she felt better and could go back to her job as a clinical coordinator, do chores and go grocery shopping without trouble.
"I don't have an understanding of why it's being denied when this medication that I have been taking has been working for me," she says.
The problem affects physicians, too, says Tina Shah, a pulmonary and critical care doctor in West Orange, New Jersey and also the chief clinical officer of Abridge, a medical AI company.
"This causes so much moral distress that I often go home, and I have to decompress because I know that I can be the best doctor, but because of prior authorizations I often can't deliver the best care," she says.
More than 90% of doctors say their patients have had to delay their health care because of prior authorization, according to a 2022 survey by the American Medical Association. A third of the doctors in that survey say the delay led to serious problems for their patients, like a life-threatening event, or hospitalization.
Shah recalled one of her patients, who had a history of endometrial cancer and had been trying to find out the status of the cancer for months. The insurance company denied prior authorization for medical imaging. This patient ended up in intensive care with a life threatening blood clot, and got the medical imaging, which also showed that the cancer had spread.
"She finally got the answer she desperately wanted for the last few months," Shah says. "But she's now grappling with much more advanced cancer and needing to be on lifelong blood thinners."
The new law that was passed in New Jersey this January aims to speed up the process. Once it takes effect next year, health insurance companies have to decide on prior authorization within three days. If a doctor says their patient needs medicine urgently, the insurance company has to approve or deny it within 24 hours.
Catherine Trillo has been a registered nurse in New Jersey for more than 30 years, and says she sometimes spends hours each day dealing with this issue on behalf of patients. She says the reform bill will make a big change for patients and medical staff.
"If this is the last thing I do in my career, It's awesome ... it makes a permanent step towards improving health care."
Shah echoes that sentiment.
"I actually have hope that I'm not just a widget in the health care industry," she says.
"When this bill goes into effect in January 2025, we're going to feel it," she says. "It's going to ... allow me to do what I actually trained to do — spend time with my patients and try and make them feel better."
Ward Sanders represents the health insurance companies in this debate, as the president of the New Jersey Association of Health Plans.
He said it's good that the law requires faster decisions, but added that prior authorization is not just red tape — the process is in place for a reason.
"The goal of prior authorization is to provide the right care at the right time and the right setting and to allow for the efficient allocation of resources."
He said, for example, insurance companies will sometimes ask doctors to consider cheaper drugs that achieve the same therapeutic effect. He pointed to a line in New Jersey's state budget documents last year saying that prior authorization saved the state health insurance program for public employees almost $100 million.
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