Diagnosed with a rare, aggressive form of cancer, Donna Cutright finds comfort in the fact she is receiving one of the most advanced treatments for her disease through Springfield's SimmonsCooper Cancer Institute.
But a wrinkle in her health insurance policy - one that could leave the Charleston woman owing thousands of dollars in unpaid medical bills- brings her to tears.
"Dealing with the cancer is bad enough without having to worry about the financial aspect of it, too," said Cutright, 52, a real-estate office manager and grandmother of three. "I wouldn't wish this on anybody."
Cutright's treatment is part of a clinical trial of a new combination of anti-cancer drugs. The drugs themselves are free to her - but not other medical costs, such as the equipment and labor associated with giving her the intravenous drug every two weeks. Her insurance plan also doesn't pay those costs - part of a significant minority of plans that don't, said SimmonsCooper oncologist Dr. Robert Mocharnuk, Cutright's physician.
A bill that passed the Illinois House unanimously and is pending in the Senate would require insurance plans, including Cutright's, to cover medical costs for patients enrolled in such clinical trials.
The bill, House Bill 5085, is opposed by many health insurance companies and large employers, which contend the proposal would boost health-care costs and shield pharmaceutical companies from the potentially costly side effects of their research.
But advocates say the bill, which is similar to laws on the books in about 30 other states, would encourage more patients to enroll in cancer-related clinical trials and ease suffering for patients like Cutright.
2014 too long to wait
Clinical trials are required for new cancer treatments to be developed, and lack of insurance coverage discourages patients from enrolling, said Mocharnuk, Cutright's physician.
"We're trying to figure out what's the most cost-effective and what is the best treatment," said Mocharnuk, a supporter of the bill. "Unless we get people into clinical trials such as these, we're never going to answer those questions."
What's more, patients in clinical trials tend to do better than other patients, Mocharnuk said.
"Patients who are on clinical trials end up getting better care because they're followed more closely by nurses," he said.
The recently passed federal health-reform law will require most insurance plans nationwide to cover medical costs associated with clinical trials, beginning in 2014. But advocates in Illinois don't want patients to wait until 2014.
The human toll can't be overlooked, said state Rep. Greg Harris, D-Chicago, the bill's House sponsor.
"People in many cases are being denied state-of-the-art treatment," he said. "It's hell on families."
$1,000 a month uncovered
The trial that Cutright enrolled in through the institute - part of Southern Illinois University School of Medicine - pays for the medicine Cutright hopes will halt or slow the progression of her adrenal cancer, which has spread to both lungs.
She has PersonalCare health insurance through her husband's employer, but the company has refused to cover most medical costs that the clinical trial doesn't cover.
Those costs, which could approach $1,000 a month, are being paid by Cutright and her husband, Steve, who works at an R.R. Donnelley printing plant in Mattoon.
"It will be hard," she said. "I'm not going to make light of that, especially if it gets to the point where I can't work, because we do rely on both incomes."
Officials from Champaign-based PersonalCare wouldn't comment.
Clinical trials, whether funded by the federal government, foundations or private companies, typically cover the cost of the medicines being tested, but often don't cover all associated costs.
People 65 and older usually don't have to worry about those costs, because federal law prohibits Medicare from declining coverage for medical services associated with clinical trials.
Insurers want protection
Insurance companies and employers are willing to support HB 5085 if its language is changed, according to Jay Shattuck, a lobbyist for the Illinois Chamber of Commerce.
Shattuck said opponents of the bill want the legislation amended so that insurers wouldn't be responsible for medical costs related to side-effects of a clinical trial.
Supporters of the bill adamantly oppose the suggestion, for two reasons, said Anne Marie Murphy, executive director of the Metropolitan Chicago Breast Cancer Task Force.
First, she said it's often impossible for doctors to determine whether a medical complication is related to participation in a clinical trial. Second, if patients considering a clinical trial know that complications could lead to large, uncovered medical bills, they wouldn't participate in the trial.
James Redden of Charleston recently dropped out of a clinical trial at SimmonsCooper when he learned that his PersonalCare insurance wouldn't cover the potential $1,000-a-month cost of the labor to give him chemotherapy drugs.
The trial would have paid for the drugs, which cost about $15,000 a month. They are more likely to extend Redden's life than an oral medicine, Mocharnuk said.
Redden, 53, a retired Coles County deputy sheriff, is battling kidney cancer that has spread to both lungs, but said he can't afford to pay $1,000 a month.
"It's very sad," Mocharnuk said. "I have to use standard therapy, which I know has a limited duration of activity, and he's a very young man. It's just a travesty."
Redden said he's a "little disappointed" by PersonalCare's decision. The insurer is covering the $7,500-a-month cost of the drugs that accompany traditional treatment.
Covering the cost of administering the new chemotherapy "seems like it would save more money for the insurance company in the long run," he said.
"It doesn't make sense," he said. "I've been rejected."
Dean Olsen can be reached at 788-1543.
Bill would make oral chemo drugs affordable
In addition to expanding insurance coverage for medical costs associated with clinical trials of cancer treatments, House Bill 5085 would make oral chemotherapy drugs more affordable, advocates say.
The bill, which passed the Illinois House 110-0 on March 25, is pending in the Senate, where the bill's sponsor is Sen. David Koehler, D-Peoria.
Rep. Greg Harris, D-Chicago, the bill's House sponsor, said some of the best new chemotherapy drugs come in pill form.
But some insurance companies either don't cover oral chemo drugs or require patients to pay large amounts of money out-of-pocket as part of the health plans' pharmaceutical coverage, he said.
To save patients money, doctors sometimes prescribe "inferior" alternatives, such as conventional intravenous chemotherapy, which often is covered without co-payments, Harris said.
HB 5085 would require insurers to cover oral cancer drugs at the same level - with the same out-of-pocket costs for patients - as intravenous chemotherapy.
Five states - Oregon, Indiana, Iowa, Vermont and Hawaii - have enacted laws similar to HB 5085, according to Dave Woodmansee, a senior specialist at the American Cancer Society in Washington, D.C.
The recently passed federal health-care reform law will impose a similar requirement on insurance plans nationwide in a few years, Woodmansee said.
Oral cancer medicines can be more cost-effective than intravenous medicines, according to Dr. Robert Mocharnuk, an oncologist with the SimmonsCooper Cancer Institute at Southern Illinois University School of Medicine.
But that's not always the case, and insurance plans that build in more out-of-pocket costs for oral cancer drugs have valid medical reasons to do so, according to Jay Shattuck, a lobbyist for the Illinois Chamber of Commerce.
-- Dean Olsen
David Spencer/The State Journal-Register -- The SimmonsCooper Cancer Institute at Southern Illinois University School of Medicine.
