Kellie Gubler's breast cancer returned last December after years of surgeries and toxic treatments, spreading to her spine, lungs and other organs.
"It's now a chronic disease. It's not curable," said the 36-year-old St. George mother of three. "But my doctor told me, 'I'm not giving up on you yet. There's a lot more we can do to prolong and improve your quality of life.'"
The pill her doctor prescribed is among a growing class of oral chemotherapy drugs that are fast supplanting intravenous chemo delivered through a patient's vein. On Tuesday the Utah Legislature is expected to take up SB189, aimed at insurers who offer less coverage for the new pills.
These "designer" drugs target cancer cells and the biological pathways through which cancer spreads, sparing healthy cells. And they are easier on patients, because they can have fewer debilitating side effects and don't require a trip to a clinic.
But they're pricey for patients not because they cost more than traditional chemo, which can exceed $20,000 for a 12-week course but because insurance policies don't fully cover them.
"Before the last five years or so when these oral drugs became available, they were few and far between," said Richard Frame, an oncologist with Utah Cancer Specialists. "No one believed there would be this explosion. The reimbursement for these drugs just hasn't caught up."
The new class of drugs accounts for 25 percent of the oncology pipeline, said Frame.
They come with their own side effects, such as "peculiar rashes," but they don't require anti-nausea medicine or carry the risks of blood clots and infections associated with IVs, he said. "Oral chemotherapy is here to stay."
To guarantee patients affordable access to the best treatment options, consumer advocacy groups are pushing for "oral oncology parity" laws. More than a dozen states have adopted such legislation.
And Sen. Curt Bramble, R-Provo, wants to add Utah to the list.
SB189 would require insurers to provide reimbursement for oral cancer drugs that's equivalent to infusion drugs.
Currently, insurers reimburse traditional chemo at an outpatient clinic as a medical treatment. Patients are charged an up front fee that covers the drug and clinic fees for administering, and there are caps on their out-of-pocket costs.
Oral cancer medication, on the other hand, is treated like a prescription, subject to insurer preferred drug lists and patient co-payments up to half of the drug's cost.
The insurance lobby opposes oncology parity laws.
"They fail to address the real underlying issue, which is cost and the increasing costs of pharmaceuticals," said Susan Pisano, vice president of communications for America's Health Insurance Plans.
Gubler qualified for financial assistance from Genentech, the maker of her drug, Xeloda, bringing her costs down to $150 month from $1,300.
The discount lasts a year, after which she'll have to re-apply.
Xeloda is cheaper than the IV drug she was taking before and it doesn't carry the same side effects, Gubler said. "With the IV drug I'd get these horrible bone aches. I'd have to take pain pills and hot baths and stay in bed for a week, which isn't doable when you've got kids to raise."
Her family and friends hold fundraisers, which help. But with her insurance deductible and co-payments her personal health spending exceeded $20,000 last year.
"I'm able to afford the pills for now. But it would be such a relief to not have to worry about this expense. As you can imagine the physical and emotional part of having cancer and raising a young family is more than enough stress in our lives right now," said Gubler, who fears leaving her kids saddled with debt.
Other patients are less fortunate and simply go without.
John Leaming of Cottonwood Heights has metastatic prostate cancer and was prescribed an oral medication called Zytiga. But the monthly copay is $2,500, which the 68-year-old retiree can't afford.
He recently started IV chemotherapy as an alternative, which his oncologist doesn't expect to work as well. "But what else can I do?" he said.
How will SB189 fare on the Hill?
O Track the progress of SB189 online. > le.utah.gov Medical Debt
Patients aren't alone in feeling financially squeezed. Utah's hospitals also face mounting unpaid bills. Read about it here: http://bit.ly/UsNgBw