March 7, 2013, Reuters
By Sharon Begley and Robin Respaut
When the local doctor who had been treating Vicky Hilborn told her that her rare cancer had spread throughout her body, including her brain, she and her husband refused to accept a death sentence. Within days, Keith Hilborn was on the phone with an “oncology information specialist” at Cancer Treatment Centers of America.
Hilborn had seen CTCA’s website touting survival rates better than national averages. His call secured Vicky an appointment at the for-profit, privately held company’s Philadelphia affiliate, Eastern Regional Medical Center. There, the oncologist who examined Vicky told the couple he had treated other cases of histiocytic sarcoma, the cancer of immune-system cells that she had.
“He said, ‘We’ll have you back on your feet in no time,'” Keith recalled.
Vicky’s cancer treatment was forestalled by an infection and other complications that kept her at Eastern Regional for three weeks. In July 2009, when she got back home, things changed. Despite Keith’s calls, he said, CTCA did not schedule another appointment. As his wife got sicker, Keith, a former deputy sheriff in western Pennsylvania, was reduced to begging.
The oncology information specialist “said don’t bring her here,” he recalled. “I said you don’t understand; we’re going to lose her if you don’t treat her. She told me I’d just have to accept that.”
Vicky Hilborn never got another appointment with CTCA. She died on September 6, 2009, at age 48.
CTCA is not unique in turning away patients. A lot of doctors, hospitals and other healthcare providers in the United States decline to treat people who can’t pay, or have inadequate insurance, among other reasons. What sets CTCA apart is that rejecting certain patients and, even more, culling some of its patients from its survival data lets the company tout in ads and post on its website patient outcomes that look dramatically better than they would if the company treated all comers. These are the rosy survival numbers that attract people like the Hilborns.
Beating the averages
CTCA reports on its website that the percentage of its patients who are alive after six months, a year, 18 months and longer regularly tops national figures. For instance, 60 percent of its non-small-cell lung cancer patients are alive at six months, CTCA says, compared to 38 percent nationally. And 64 percent of its prostate cancer patients are alive at three years, versus 38 percent nationally.
Such claims are misleading, according to nine experts in cancer and medical statistics whom Reuters asked to review CTCA’s survival numbers and its statistical methodology.
The experts were unanimous that CTCA’s patients are different from the patients the company compares them to, in a way that skews their survival data. It has relatively few elderly patients, even though cancer is a disease of the aged. It has almost none who are uninsured or covered by Medicaid — patients who tend to die sooner if they develop cancer and who are comparatively numerous in national statistics.
Carolyn Holmes, a former CTCA oncology information specialist in Tulsa, Oklahoma, said she and others routinely tried to turn away people who “were the wrong demographic” because they were less likely to have an insurance policy that CTCA preferred. Holmes said she would try to “let those people down easy.”
Equally significant, CTCA includes in its outcomes data only those patients “who received treatment at CTCA for the duration of their illness” — patients who have the ability to travel to CTCA locations from the get-go, without seeking local treatment first. That means excluding, for example, those who have exhausted treatment options closer to home and arrive at a CTCA facility with advanced disease.
Accepting only selected patients and calculating survival outcomes from only some of them “is a huge bias and gives an enormous advantage to CTCA,” said biostatistician Donald Berry of MD Anderson Cancer Center in Houston.
The company defends its practices. Spokeswoman Pamela Browner White said CTCA’s survival data are in “no way misleading, nor do they deviate from best practices in statistical collection and analysis.” As for the Hilborns, she said, the company does not discuss individual cases.
Cancer Treatment Centers of America got in trouble with regulators in 1996, when the Federal Trade Commission accused it of, among other things, presenting survival claims it couldn’t support. The company entered into a consent decree with the FTC and, without admitting any of the allegations, agreed not to make unsubstantiated outcomes claims. The company also “implemented a voluntary, robust compliance program,” White said.
Asked if CTCA’s current outcomes claims conform to the consent decree, Richard Cleland, the agency’s assistant director for advertising practices, said: “No one at the commission can comment on non-public information.”
A ‘free market’ guy
Cancer Treatment Centers of America, which estimates it treats 4 percent to 8 percent of U.S. patients with complex and late-stage cancer, was founded in 1988 by Richard J. Stephenson, who has served as chairman ever since.
Stephenson, who declined to comment for this article, serves on the board of FreedomWorks, a non-profit group that advocates for small government and low taxes, and he is “very much a free-market guy,” CTCA President and Chief Executive Stephen Bonner told Reuters.
He also has a history of pushing limits. A graduate of Northwestern University Law School, Stephenson started out as an investment banker. In 1966 he became a trustee of Americans Building Constitutionally, an organization that helped wealthy individuals set up not-for-profit corporations and personal trusts to avoid paying federal income and inheritance taxes.
Stephenson ventured into healthcare in 1975, when he and partners bought Zion-Benton Hospital in Zion, Illinois, renaming it American International Hospital. By the late 1980s, American International was facing financial problems and its “reputation had been severely damaged” by local press reports about its use of unproven cancer treatments, according to a 2004 court opinion on a successful petition by a former CTCA president seeking an increased valuation for his share of the company.
In 1988, Stephenson founded CTCA. He was motivated, said CEO Bonner, by the difficulty he had identifying and obtaining the best therapies for his mother after she developed bladder cancer. She died in 1982.
Stephenson began building what was to become a national network of cancer centers that would uphold “the Mother Standard,” described on the company website as “a warm, nurturing approach (that) involves caring for patients as we would want care for our own mothers, fathers, sisters, brothers, and other loved ones.”
The hospitals also would seek patients “who were willing to travel to receive treatment” and “who were covered by private commercial insurance and could afford those expenses not paid by insurance,” according to the 2004 court opinion.
The tough cases
Today, CTCA – with hospitals in Illinois, Oklahoma, Pennsylvania, Arizona and Georgia, plus an outpatient clinic in Washington state and headquarters in Schaumburg, Illinois – is the only hospital system in the country that specializes solely in complex and advanced cancers. It does not release revenue or profit figures.
The company has treated about 50,000 patients since 1988, CEO Bonner said. (By comparison, the non-profit MD Anderson, a leading cancer center, treated about 115,000 patients last year.)