MADISON (WITI) -- The kind of cancer treatment you get may depend on what you can pay for -- and the Wisconsin Legislature is working to change that, via a bill called the Cancer Treatment Fairness Act.
Katherine Nelson was diagnosed with a rare form of leukemia.
"Pretty much sent home to die," Nelson said.
But Nelson's biggest shock came when she went to the pharmacy to get her prescribed chemotherapy pills.
"I was told -- not by my medical team, but my insurance company -- that I couldn't have it if I didn't have the ability to pay. I fought with them for six hours. The pharmacy was going to close. You can't buy these at Walgreens -- you have to get it at the hospital, and so I slapped down my credit card and said 'I'd like to buy five days of life.' If I didn't have that $1,200 on my credit card, I would have walked out of the hospital without life-saving treatment," Nelson said.
It was the same story for Jennifer Grandkoski of Menomonee Falls. She was diagnosed with leukemia 13 years ago, and her doctors put her on chemo pills.
"I can remember my mom being at the pharmacy just begging to run it through differently so we didn't have to pay it that way," Grandkoski said.
The problem is that most insurance companies consider the drugs a pharmaceutical benefit, and do not cover their cost -- except when the chemotherapy is administered in a clinic.
Grandkoski ended up paying more than $50,000 out-of-pocket for her cancer treatment.
"The financial effects of having to pay for the oral chemo that I was treated with has devastated me," Grandkoski said.
Dr. Parameswaran Hari, a leading oncologist at the Medical College of Wisconsin says the disparity is a kind of double blow to his patients. First, they're dealing with cancer, and then they're facing bankruptcy.
"Historically, cancer was always treated by intravenous medications, which are administered in the hospital or in the doctor's office. So newer medications, which we call targeted medications are available only in oral form -- so they just got coverage as if they would cover a diabetic medication or hypertension medication under the prescription benefit," Dr. Hari said.
Some state lawmakers are trying to change that via a bill called the Cancer Treatment Fairness Act.
The bill would "prohibit higher co-payments regardless of the benefit category." In other words, it would require insurers to cover oral chemotherapy treatment in the same way they cover intravenous chemotherapy.
"There's got to be a way that it's the same. If it's pill form, if it's IV form, it should be treated as the same treatment," Nelson said.
State Senator Alberta Darling (R - River Hills) says whether the chemotherapy is in pill form or via an IV, it's still chemo, and she wants to force companies to make sure the costs for chemo pills are in line with the traditional IV costs.
"What we're trying to say is the treatment -- whether it's intravenous or oral, the choice should be made between the doctor and the patient," Sen. Darling said.
Oral chemotherapy is a growing trend. More than 25% of the 400 chemotherapy drugs in development are planned as oral medications.
"Cancer is increasingly being turned into a chronic disease, which you live with. It may not necessarily cure the patient, but people can live with that for decades taking that medicine. It's just not viable. I don't see how we can keep it this way going forward," Dr. Hari said.
A Pharmaceutical Executive Magazine study showing patient out-of-pocket costs for oral cancer medication averaged $2,942 in 2009, which represented a 17% increase over the costs in 2008.
A number of states have been pushing insurance companies to cover the pills the same way they cover traditional chemotherapy treatments. Between 2008 and 2013, 26 states and the District of Columbia have enacted oral chemotherapy parity laws, and all of them have prohibited insurers from raising rates on intravenous and injectable chemotherapy treatment.
"That's the rub. To pull one drug out of the mix and treat it as a medical benefit is a problem, and it's the beginning of an argument that any expensive drug should be dealt with that way," Business lobbyist Jim Buchen said.
Buchen says the bill would impose restraints on the benefit designs that distribute costs between insurance premiums and cost-sharing, such as deductibles and co-payments.
"That's a new wrinkle, a new intrusion that's more intrusive than the ACA in many respects when you get into the business of telling the company how they're going to run," Buchen said.
Sen. Darling says it's simply asking for insurers who cover chemo to cover it equally.
"Many legislators have a concern that it's going to be a mandate, but it is not a mandate," Sen. Darling said.
The pills made all the difference for Nelson.
"It saved my life. Taking the oral drug not only saved my life, it gave me incredible quality of life, compared to someone who has to go through grueling IV treatment," Nelson said.
Nelson is urging Wisconsin lawmakers to pass the bill, so that no one in Wisconsin ever has to face the moment she faced at the pharmacy.
"I don't want anyone to sit there and beg for a life-saving drug. I don't want to have to make decisions on how they're going to get the drug," Nelson said.
The Cancer Treatment Fairness Act has been co-sponsored by nearly 60 state lawmakers -- both Democrats and Republicans.