SALT LAKE CITY — Like most people given a cancer diagnosis, Kellie Gubler wasn't expecting it.
The St. George wife and mother of three also didn't expect the 11 rounds of chemotherapy, more than 30 doses of radiation, full mastectomy, seven surgeries and hormone therapy that has followed in the nearly three years since stage 3C breast cancer first reared its ugly head in 2010.
Also unexpected, the cancer returned last August, but as a stage 4 metastatic type, affecting her spine, lungs and other organs. With it, the mutations have absorbed a little more of her typically upbeat spirit.
Each procedure, while emotionally and physically degrading, has given Gubler, 36, more time with her family, including her children, ages 11, 8 and 5. Time is something she is more grateful for every day.
"They're all I've got," she said. "Without my husband and kids, what would I be fighting for?"
And fight she has.
Doctors have given Gubler some hope in the form of an oral chemotherapy medication that provides fewer painful side effects than the intravenous type that has been slowly breaking her down over the years.
The problem, though, is that because drugs are traditionally covered under a health insurance plan's pharmacy benefit and IV therapy is considered a medical care benefit, the insurance portions of payment are drastically different for the two methods.
Payment models are then prohibitive for some doctors.
"If I have two treatments that I think are similar and one is expensive for the patient and the other isn't, I'd recommend the one that isn't going to cripple them financially," said Dr. John Ward, an oncologist and professor of medicine at the Huntsman Cancer Institute.
Ward said every patient has a different outlook on life, but cost must be taken into consideration at some level.
"Other alternatives are likewise expensive," he said. "Sometimes the same drugs, given by vein, are also expensive."
Ward said, in some situations, it's probably poor care not to give the oral agent, as some medications are fine-tuned to better target specific types of cancers.
And, he said, more and more oral therapies are coming available with advances in technology and cancer research.
The Utah Legislature is considering a bill that aims to provide parity for oral chemotherapy drugs. Sponsored by Sen. Curtis Bramble, R-Provo, SB189 would require insurers that already cover intravenous chemotherapy to cover the pill form at similar rates.
Bramble said it is not a mandate for more coverage, just an attempt at fair coverage for cancer patients.
Travis Winn, executive director for Utah Health Plans, said increasing coverage for some patients might harm the relationship insurance companies have with their contractual customers, as the cost of a prescription drug benefit could increase.
From the financial standpoint of the industry, increasing the pharmacy benefit would eventually mean more people will lose coverage, Winn said.
However, his claims could not be substantiated Tuesday. He said the industry is compiling data for projected losses if the bill passes, but Bramble pointed out that states that have already adopted such parity have not been able to show any erosion in the existing insurance markets.
In recent years, 20 states and the District of Columbia have enacted anti-cancer medication parity laws, according to the Association of Community Cancer Centers, an advocacy organization with thousands of professional members across the county. Twelve more introduced similar legislation in 2012. Congress has also considered the issue.
Nephi resident Cody Anderson pays $5,000 a month for the oral chemotherapy medication that has given him a new lease on life and a normal life expectancy, which is phenomenal for the rare form of leukemia he has.
"Health insurance is a gamble. … Insurers gamble that you won't get sick," Anderson said, adding that he had always carried a plan that was sufficient for his needs until he became a cancer patient.
"The insurance companies are forcing us to choose between life and death," said his wife, Shelly Anderson. "We should not have to face financial devastation because of a cancer diagnosis."
Bramble said the average monthly costs to insurers for the most widely used 18 IV chemotherapy treatments is $12,820. For the most common 13 oral chemotherapies, the costs pale in comparison, at $5,699 per month.
He is working with those in opposition to the bill, mainly representatives from the health insurance industry, and said there is ample evidence that more could be done for patients already dealing with a frustrating diagnosis.
"Oral chemotherapy is the wave of the future," said leukemia survivor Jamie Toftum, who lives in Vernal.
She said her once-terminal diagnosis is treatable with oral chemotherapy.
"In 20 years, people will not go in for IV chemotherapy treatment. They will take a pill at home," Toftum said.
Without patient assistance programs offered by her local pharmacy and drug manufacturers, Gubler said the medication prolonging her life wouldn't be an option. It helps to shave off more than $1,000 each month. Neighbors and friends have also helped with medical costs through various fundraisers over the years.
With insurance coverage, Toftum's copay for three-pill-a-day, twice-daily regimen of Xeloda, the anti-cancer treatment used primarily for breast cancer and other types, is $1,300 a month.
Patients must be accepted for such programs that help with the cost of a medication, and while some only provide temporary assistance, a lot of people are denied participation based on existing insurance coverage and/or income levels.
Oral chemotherapy doesn't come completely without side effects. Gubler deals with an annoying rash that appears on her hands and feet, causing rough and scaly skin. And there are others, but they are nothing compared to what she's been through and would be going through if subjected to additional IV treatments.
"For me, the oral chemotherapy is just as effective as the IV chemo. They are both chemo, they are used for the same purpose, so why are they covered differently?" Gubler asked, adding that they have paid more than $20,000 out-of-pocket for her treatment since she was first diagnosed.
Because her condition is now chronic, she said she expects to pay as much or more for medical care for the rest of her life.
"It would be such a relief to not have to worry about this expense. As you can imagine, the emotional and physical part of having cancer and raising a family is more than enough stress in our lives right now," Gubler said.
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