Loretta Jones doesn't hesitate upon being asked to describe her life living with fibromyalgia.
"It is so painful," she says. "It's so deep into your joint areas."
Jones, 72, is the CEO of Healthy African American Families, a South Los Angeles-based advocacy program that focuses on the health of minority communities.
"Say you had to get up, and someone took a knife and stuck it into you," she said. "And twisted it. That's how this pain feels."
To alleviate the long-term, body-wide pain that fibromyalgia causes, Jones' doctor prescribed the drug Lyrica. But Jones, who has good health insurance, said it took her a year-and-a-half to fill the prescription, because her insurance company had her on a regimen known as step therapy.
What is step therapy?
Dr. Derrick Butler, the associate medical director at T.H.E. Clinic in South L.A., said step therapy is implemented by insurance companies to regulate how doctors prescribe medicine.
"In prescribing, we have to usually start with the generic, base medicines," he said. "And until the patient has [tried those] and failed, or has tried those and had adverse events or side effects, then we are allowed to prescribe to the next level."
Butler described the procedure: Each new prescription ups the ante a little bit. Every new prescription is a step, and insurance companies will only cover certain drugs – usually brand-name, newer, more powerful or more expensive ones – after a certain number of steps have been completed.
For Loretta Jones, that process took too long.
"[I told my insurance company that] the pain keeps me up at nighttime," she said. "I'm crying, sitting in the bathtub, with my feet in the bathtub running cold water on them to stop the pain."
If Assemblyman Jim Frazier has his way, stories like Jones' will be a thing of the past. Frazier, who represents California's 11th District, introduced AB 889, a state bill that would, among other things, limit the number of steps in step therapy. (See the full text of the bill below.)
"There are some processes that have even five to six steps before you can receive the intended medicine that your doctor prescribed," he said. "What we're trying to do is at least parallel what Medicare has – no more than two steps is what we're hoping for."
Although Governor Jerry Brown vetoed a similar bill last year, Frazier is optimistic his bill will reach the governor's desk. It was approved by the state Senate Health Committee on Wednesday, and is headed to Senate Appropriations Committee next.
Frazier said patients' quality of life is the driving force behind the legislation. He remembered overhearing a conversation about a mental health patient who couldn't get the medicine he needed and was going through step therapy.
"They were being manhandled to go through this process," said Frazier. "They weren't being cured, they weren't being helped."
Why is step therapy important?
Insurance companies respond to claims about problems with step therapy with concerns about patient safety. Patrick Johnston is the president and CEO of the California Association of Health Plans, whose members collectively cover about 21 million Californians.
"We have a virtual epidemic of prescription drug abuse, and much of it is concentrated [among] young people whose brains are still forming in their teenage years and then into young adulthood," he said. "To the extent that those individuals or anyone is prescribed a serious pain medication, it's important to worry about the possibility of abuse."
The association is officially against AB 889. Johnston said he's wary of applying a single rule – the two-step limit – to step therapy. He added that gradually moving patients from benign to intense medications is an effective, safe way to dole out prescriptions – and that when certain situations call for it, there are ways steps can be accelerated or even skipped.
"To jump immediately to Oxycontin or some of the really useful, but dangerous drugs, would be a mistake," he said.
Dr. Derrick Butler, from T.H.E. Clinic, noted that in addition to patient safety, step therapy also helps with another very big aspect of health care: "It's all about cost."
Here's how: Generic medication is generally much, much cheaper than brand-name drugs. If the generics are effective, insurance companies can save hundreds – even thousands – of dollars per patient by making them try those before even giving them the option of more expensive brand-names. Multiply that by the number of people covered by an insurance plan, and it's easy to see how step therapy can keep costs down.
"I think it's necessary," said Butler of step therapy, "because I think we do need to control costs in health care. In order for us to really expand health care as we're going to do, we have to control costs."
It's also uncommon for patient health or safety to be affected by step therapy.
"I'd say 80 percent of patients can control their chronic conditions with generic medications," he said.
Folks like Loretta Jones, of course, are unfortunate exceptions. But Dr. Butler says in those situations, patients and doctors just have to "make enough noise" to the insurance companies, who will usually acquiesce to persistence.