TUESDAY, APRIL 27, 2010
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QUESTIONS IN CANCER TREATMENT
High-priced drugs add to patients’ woes
drugs continued from E1
“If a drug costs $3,000 a month, most of the patients we help cannot afford to come up with $1,000 a month,” said Nancy Davenport-Ennis, founder of the nonprofit Patient Advocate Foun- dation of Newport News, Va., which helps people pay for treat- ment. Most cancer patients, she notes, take several medicines, not just one. The new health-care coverage law will close the dough- nut hole by 2020, but it does not specifically address the financial obstacles to oral chemotherapy, oncologists say.
Genuine advances
Although some new oral drugs
have demonstrated only incre- mental benefits, extending life for several weeks, others represent genuine advances and have trans- formed once rapidly fatal cancers into manageable diseases. “I’ve got two grandkids, and I thank the Lord every day I wake up and get to see them,” said Wil- liam Bunch, 65, a former factory mechanic in Suffolk, Va. On Christmas Day 2000, Bunch was told he had chronic myelogenous leukemia (CML) and a life expec- tancy of about two years. Soon af- terward he began taking a then- experimental drug called Glee- vec, which he has been on ever since. “Without it I’d die,” he said. “Gleevec is the treatment for
CML: There is no IV alternative,” said oncologist Douglas Blayney, medical director of the Compre- hensive Cancer Center at the Uni- versity of Michigan. “It can really give people their lives back.” But growing numbers of leuke-
mia patients are having trouble obtaining the drug because they can’t afford it. The Government Accountability Office recently re- ported that the average annual negotiated price of Gleevec in Part D plans jumped 46 percent between 2006 and 2009, from $31,200 to $45,500, raising the average out-of-pocket cost for a year’s supply from about $4,900 to more than $6,300. Insurance industry officials say
that the high cost of oral drugs, not paltry reimbursement rates, are the primary obstacle. “If you look at a drug that costs $60,000 a year, the real question is, ‘Why does it cost $60,000 a year?’ not ‘Why doesn’t a plan cover it?,’ ” said Susan Pisano, a spokeswom- an for America’s Health Insur- ance Plans, the industry trade as- sociation. “Our member compa- nies are trying to do everything they can, but I would say this is a real hardship for people.” But Ken Johnson, senior vice president of the Pharmaceutical Research and Manufacturers of America, the trade association for drug companies, defended the price of oral chemotherapy drugs, citing the “very long, risky and ex- pensive” process of developing them. Cancer drugs “deliver good economic value” and “represent a small share of health-care costs overall,” he said in a statement. Patients who need help paying for them can receive free or low-cost
CHRISTINA KOCI HERNANDEZ FOR THE WASHINGTON POST
Jere Carpentier considered taking out a loan to pay for cancer pills that cost $4,000 a month.
medicines through programs sponsored by drug companies, he said.
Chemo parity
To Brian Durie, a hematologist- oncologist at Cedars-Sinai Hospi- tal in Los Angeles who specializes in the treatment of multiple my- eloma, the debate about cost ob- scures a stark reality. “Myeloma patients need access to all the drugs,” he said. “They’ve got two choices: an oral drug or death.” Some myeloma patients need an oral drug called Revlimid, which can cost more than $7,000 per month, after an IV drug stops working. The pill enables some patients to continue working and to live normal lives.
“Some of the saddest stories
are patients who say, ‘I don’t want to die and leave my family with a bundle of debt,’ ” Durie said. “These are people with a lethal disease, and it is so, so stressful” for them to also wrestle with the question of how to afford poten- tially life-saving medication. The issue of “chemo parity,” the requirement that insurers cover oral and IV chemotherapy equal- ly, is popping up in legislatures across the country. Rep. Brian Higgins (D-N.Y.) introduced fed- eral legislation last year, and par- ity measures have been consid- ered in more than 20 states and adopted by several as well as the District of Columbia. Oregon’s law, which was the nation’s first when it took effect in 2008, has expanded access to oral chemo- therapy and appears to be work-
ing well, insurance regulators and oncologists in that state say. “We need to level the playing
field,” said Baltimore oncologist Paul Celano, president of the Maryland-D.C. Society of Clinical Oncology. Celano recently testi- fied in support of a parity bill in the Maryland General Assembly; the measure did not come to a vote.
Pisano of AHIP says insurers are opposed to such mandates “because they make health care less accessible rather than more affordable” by raising costs. Medicare officials say they are
aware of the problem, but con- strained from doing much about it. Medicare has little sway over drug prices, said spokesman Pe- ter Ashkenaz. Solving the prob- lem of unaffordable co-pays and co-insurance would require put- ting more money into the system or persuading drug companies to reduce prices, he said.
‘That’ll be $10,000’
Steve Yarrington of Topeka, Kan., knew that the Temodar pills his doctor prescribed last year, two weeks after his surgery for a malignant brain tumor, were very expensive. But Yarrington, an un- employed automobile dealer, was shocked when he went to pick up the first month’s supply and was told by the pharmacist, “That’ll be $10,000.” There must be some mistake,
Yarrington said; the pharmacist insisted the amount was correct. “You can just keep it and I’ll go home and die,” Yarrington re-
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plied, walking out empty-handed. His wife, Kaye, who recounted the experience in an interview and in January before a Kansas Senate committee considering parity legislation, said he ulti- mately obtained the drug for free from the manufacturer, after his oncologist interceded. Cancer specialists say such sto- ries are typical. “We have to hire people to get free drugs for pa- tients,” said Montana oncologist Patrick Cobb, president of the Community Oncology Alliance, a lobbying group composed of can- cer doctors. Restricting access to oral drugs is a false economy, in Cobb’s view. Some patients de- nied oral drugs may deteriorate “and then go on to maybe have a bone marrow transplant for $1 million,” he said. Jere Carpentier said she and her husband considered taking out a loan to pay for her chemo- therapy pills, but decided against it. She thinks they made the right decision: Carpentier wound up needing more rounds of chemo than doctors first thought, and last November, her husband lost his job. “It would have cost us
$24,000,” she said. “That was just too big.”
health-science@washpost.com
This story was produced through a collaboration between The Post and Kaiser Health News. KHN is a service of the Kaiser Family Foundation, a nonpartisan health-care-policy research organization unaffiliated with Kaiser Permanente.
Denial may have roots in a patient’s culture
denial continued from E1
Very protective
Whether it stems from a fear of loss of womanhood or a fear of death, as Freud believed, or from myriad other anxieties, de- nial after a diagnosis can be a very protective defense mecha- nism, according to Livneh. “The major function of denial is to alleviate anxiety. To find some way to cushion the very se- vere stress that may be under most conditions too much for the person to handle,” Livneh said. He said that after the diag- nosis of a life-threatening ill- ness, a person might refuse to believe that she will die, experi- ence pain from treatment or lose her hair. In these situations, denial can provide the emo- tional and mental space a per- son needs to process distressing information. “Moderation in everything,” Livneh said. He said it is normal to deny the severity, duration or far-reaching consequences of a condition as long as that process does not jeopardize medical in- tervention. Denial following di- agnosis allows the ego to muster up the power and energy it needs to deal with the situation, he said.
Donald Northfelt, a medical oncologist who specializes in breast cancer at the MayoClinic, agrees.
“Denial in some ways can be a
healthy thing because it can help patients overcome things that would be too traumatic if they were forced to face them straight on,” Northfelt said. Northfelt, who has been tak- ing care of breast cancer pa- tients for 20 years, said that when he was newly trained, he used to get frustrated with pa- tients’ denial. That does not happen as much anymore. “Age and experience has given me a greater depth of under- standing and I think more com- passion for people who are ex- periencing denial about their medical situations,” he said. Northfelt said his obligation is to inform his patients to the best of his ability about what he knows, but he can compromise on some of their emotional or cultural needs. “A patient may say to me, ‘I
don’t want to hear the word “cancer.” I don’t believe I have cancer. I don’t want to think about it,’ ” said Northfelt. But, he said, when he asks, “Are you willing to let me do what I think I need to do to make you well?” and the patient says yes, then he is fine with leaving the explicit mention of cancer out of his dis- cussions with the patient. In ad- dition to adjusting to his pa- tients’ emotional needs, North- felt also recognizes that people from some cultures are more comfortable talking openly about illness than others. “As long as the person shows movement away from relying on
E5
ROY SCOTT FOR THE WASHINGTON POST
“The major function of denial is
to alleviate anxiety.”
Hanoch Livneh, a psychologist at Portland State University in Oregon
denial as an exclusive way of dealing with pain and anxiety,” then the denial is adaptive, said Livneh.
Livneh said he does not ad- vise confronting patients direct- ly about their denial. “Any at- tempt to confront denial in an aggressive way really backfires,” he said. “You must allow [pa- tients] to act at their own pace.” In “ ‘Nothing Is Wrong, Doc-
tor’: Understanding and Manag- ing Denial in Patients With Can- cer,” an article published in the journal Cancer Investigations in 2006, Rabinowitz advises pro- viders to listen to their patients to help them move out of denial. “Empathic listening is being able to put yourself in a place so that you can hear how I feel, and you can truly appreciate how I feel even though you may not have the same feelings or same life experiences,” Rabinowitz said.
Physicians do it, too
Doctors sometimes begin to understand their patients better when they experience denial themselves.
“I think all of us in the med- ical profession are susceptible to that,” Northfelt said. He then told a story about how his left leg had become painful and swollen during a long automo- bile trip he took last summer. By the time Northfelt arrived home, he said, his left leg was twice as big as his right. “My wife saw it and became
extremely alarmed,” he said. So Northfelt went to the hospital. A scan revealed a huge blood clot. “That possibility had oc-
curred to me in the back of my mind, but I really did not want to think that that was happen- ing to me,” Northfelt said. “I spend endless time creating my own explanations about what’s going on with me or making my own diagnosis.”
But while denial can be dan-
gerous, life without some meas- ure of denial would be a catas- trophe, said Livneh. “We would be swamped with so much negative stimuli we could not handle it,” he said.
health-science@washpost.com
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