By Merrill Goozner, The Fiscal Times
This story comes from our partner 

Julie Grabow, an oncologist at the Fred Hutchinson Cancer Center in Seattle, recently prescribed an exciting new therapy for a 60-year-old woman with metastatic breast cancer.

Three-and-a-half years into her battle against the disease, the patient had already exhausted three different anti-estrogen therapies, each of which only put a temporary check on the spreading tumors.

The newly prescribed drug, Novartis’ Afinitor, is one of the recently approved targeted therapies that have generated a lot of excitement among cancer patients and oncologists in recent years.

Drugs that target just the cancer cells promise the same or better results as toxic chemotherapy, but with far fewer side effects.

There was a catch, though. Like many of the latest cancer drugs, Novartis is charging exorbitant amounts for the treatment – in this case, $10,000 per month.

That quickly put an end to that possibility for Grabow’s patient. Her monthly co-payment, even after her insurance company agreed to pay its share of the off-label use the drug (the Food and Drug Administration has only approved Afinitor for kidney and pancreatic cancer, not breast cancer), was $2,900.

“She can’t afford this, even though it’s potentially a less toxic and potentially equally effective regimen,” Grabow said. “Chemo will help her, and it’s a reasonable choice. But that choice is 100 percent driven by economics.”

Over the past year, official Washington and candidates on the campaign trail have locked horns over the best way to curb rising health insurance costs. The public has been bombarded with dueling slogans – Republicans vowing to fight the “death panels” and “rationing” of Obamacare while Democrats promise “guaranteed access” and “affordability” with the Affordable Care Act.

But an economic drama that neither side wants to confront is playing itself out in cancer wards and oncologists’ offices across the country.

Unaffordable new drugs, even when they’re covered by insurance, are being rationed by price as patients, doctors and hospital officials struggle with what is likely to be the most pressing problem for the nation’s health care system over the next decade: how to pay for the spectacular rise in the cost of cancer care, especially drugs and diagnostic tests.

“In the real world of private practice where most care is delivered, it would be a mistake to say rising costs haven’t affected care,” said Eric Nadler, a head, neck and lung cancer specialist at Baylor University Medical Center.

The growing cost of cancer care will impose its greatest burden on the nation’s Medicare system, since 55 percent of all cancers are diagnosed in individuals 65 or older.

A recent study by the National Cancer Institute projected the cost of treating the 29 most common cancers in men and women will rise 27 percent by 2020, even though incidence of the disease is going down due to successful public health campaigns like the war on smoking.

The study pointed out that its projections were based on 2006 Medicare claims data, which predated the development of most of the latest targeted therapies.

There’s no doubt that there will be many new therapies for cancer coming to market in the years ahead. The nation’s $150 billion public investment in understanding the biology of cancer – the science side of the War on Cancer launched by President Richard Nixon in 1971 – is beginning to bear fruit.

The pharmaceutical industry, which draws on that publicly funded science to develop drug candidates, now has 887 new cancer drugs in development, over 30 percent of its total portfolio of new drug candidates, according to the Pharmaceutical Research and Manufacturers of America, the industry trade group. That’s up from 646 or 26 percent of the total devoted to cancer in 2006.

The industry is pouring increased research and development resources in cancer therapeutics in hopes that it will replace the revenue being lost from the expiration of patents on blockbusters like Lipitor.

However, since there are fewer cancer patients than there are people with chronic conditions like elevated cholesterol, and many don’t live very long, the prices needed to support the industry’s current size and structure, and profits must be substantially higher.

“They’re trying to maximize profits given their incentives,” said Peter Neumann, director of the Center for the Evaluation of Value and Risk in Health at Tufts Medical Center, which receives funding from the drug industry.

Possible solutions, he said, include letting Medicare set prices based on the medical value of adding extra months to life. That’s a variation on Great Britain’s cost-effectiveness model, which has been roundly condemned by most U.S. politicians and the press.

The other path is to turn to a bundled payment for every for every episode of cancer care and let the health care delivery organizations and private insurers sort it out. (Bundled payments account for all medical services associated with a given episode of care—doctors, nurses, technicians, etc.) That approach, in essence, would force the marketplace to execute the rationing.

“Bundled payment isn’t a panacea, but it does create incentives,” Neumann said. Some private insurers are experimenting with bundled payments for cancer care.

A quick review of the new cancer drugs approved by the Food and Drug Administration last year reveals how fast drug prices are rising.

Most of the older chemotherapy regimens for cancer, some of which have been around since the 1950s, are generic and relatively inexpensive.

But among the six new drugs approved in 2011, the cheapest – Johnson & Johnson’s Zytiga for advanced prostate cancer – cost $44,000 a year. The drug extended life by an average of less than 5 months to 16 months, according to a company spokesperson.

At the high end of the spectrum was Adcetris, a biotech product from Seattle Genetics that treats recurrences of Hodgkin’s lymphoma. A highly curable disease when initially treated in the 8,830 mostly middle-aged patients who get the disease every year, it is usually fatal if a drug-resistant strain emerges later in life.

Adcetris, the first new treatment to come along since 1977, kept the cancer in check for nearly 7 months in the single small trial that led to its quick FDA approval. It’s price tag: $216,000 for a full course of treatment.

Skin cancer specialists had a lot to cheer about in 2011 with two new therapies coming on the market for metastatic melanoma, which is fatal within one year for about 75 percent of the 10,000 people stricken each year.

But Roche/Genentech’s Zelboraf cost $61,400 a year and Bristol-Myers Squibb’s Yervoy, which nearly doubled the one-year survival rate from 25 percent to 46 percent, cost $120,000 for a four-month course of treatment.

“We price our medicines based on a number of factors including the value they deliver to patients and the scientific innovation they represent,” said Sarah Koenig, a spokeswoman for Bristol-Myers. “We have one of the most robust patient assistance programs for cancer patients in the industry.”

Most drug companies have patient assistance programs for poor or struggling patients, but many only come into play if patients are poor or families have exhausted their savings.

And since many of the latest therapies, like the older chemotherapies they are replacing or supplementing, extend life for brief periods of time, patients wind up weighing whether they want to deplete their children’s inheritances for a couple extra months of being very, very sick.

A study released at last June’s annual conference of the American Society of Clinical Oncology, which represents the nation’s 25,000 oncologists, revealed that patients with co-payments over $500 a month were four times more likely to refuse treatment than those whose co-payments were under $100 a month.

“The price of drugs can’t be set so outrageously high,” study author Lee Schwartzberg told Reuters. Schwartzberg is the chief medical officer at Acorn Research, which conducted the study.

“All stake holders have to get together and compromise to translate this great science into great patient care without breaking the bank.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

By Sandra G. Boodman
This story was produced in collaboration with 

Every year like clockwork, Anna Peterson has a mammogram. Peterson, who will turn 80 next year, undergoes screening colonoscopies at three- or five-year intervals as recommended by her doctor, although she has never had cancerous polyps that would warrant such frequent testing. Her 83-year-old husband faithfully gets regular PSA tests to check for prostate cancer.

Doctor inspects mammogram. Photo by Bill Branson/NCI

“I just think it’s a good idea,” says Peterson, who considers the frequent tests essential to maintaining the couple’s mostly good health. The Fairfax County resident brushes aside concerns about the downside of their screenings, which exceed what many experts recommend. “Most older people do what their doctors tell them. People our age tend to be fairly unquestioning.”

But increasingly, questions are being raised about the overtesting of older patients, part of a growing skepticism about the widespread practice of routine screening for cancer and other ailments of people in their 70s, 80s and even 90s.

Critics say there is little evidence of benefit — and considerable risk — from common tests for colon, breast and prostate cancer, particularly for those with serious problems such as heart disease or dementia that are more likely to kill them.

Too often these tests, some doctors and researchers say, trigger a cascade of expensive, anxiety-producing diagnostic procedures and invasive treatments for slow-growing diseases that may never cause problems, leaving patients worse off than if they had never been tested. In other cases, they say, treatment, rather than extending or improving life, actually reduces its quality in the final months.

“An ounce of prevention can be a ton of trouble,” observed geriatrician Robert Jayes, an associate professor of medicine at George Washington University School of Medicine. “Screening can label someone with a disease they were blissfully unaware of.”

Dartmouth physician Lisa M. Schwartz cites one such case: a healthy 78-year-old man who was left incontinent and impotent by radiation treatments for prostate cancer, a disease that typically grows so slowly that many men die with — but not of — it.

The U.S. Preventive Services Task Force, an independent panel of experts that evaluates the risks and benefits of screening tests, does not endorse PSA testing or routine colon screening after age 75.

The panel, whose recommendations will guidesome coverage decisions under the 2010 federal health law that expands access to screening, says there is no evidence for or against mammography after age 74 and recommends that most women stop getting Pap smears to detect cervical cancer after 65.

So far the task force’s guidelines appear to have had limited impact. Researchers in June reported in the journal Cancer that nearly half of primary-care doctors would advise a woman with terminal lung cancer to get a routine mammogram — even if she was 80 years old.

Last May, Texas researchers reported in the Archives of Internal Medicine that 46 percent of 24,000 Medicare recipients with a previous normal test underwent a repeat colonoscopy in less than seven years and sometimes as few as three — compared with the 10 years recommended by the task force.

In nearly a quarter of cases, the repeat test was performed for no discernible reason. (Medicare is supposed to cover the screening test, which can cost about $2,000, only once a decade if no cancer or polyps have been found, but the program paid for all but 2 percent of the procedures reviewed by the Texas researchers.)

“More is not always better, and that becomes particularly true in older Americans where the dangers of medical care grow,”said Michael LeFevre, a professor of family medicine at the University of Missouri School of Medicine who is co-vice chair of the task force. “The older you get, the more likely it is that something else is going to make you sick or die.”

Colon polyps take 10 to 20 years to become cancerous, while the risks from colonoscopy, including intestinal perforation and heart attack, substantially increase after age 80.

Experts point to several reasons for the persistence of overscreening: habit; incentives that pay doctors and hospitals for individual procedures; quality assessments that rely on how many patients receive such tests; physicians’ fears of missing something important or of upsetting elderly patients — or their children — by suggesting that screening is unnecessary because a patient is too old or too sick to benefit.

In an era where discussions about end-of-life care are branded as “death panels” and curtailing unnecessary and expensive testing is regarded by some as rationing, experts say it is not surprising that overtesting endures. Many doctors say it’s easier to simply order a test than to discuss its risks and benefits with patients.

But some doctors believe it’s time to resist. “I think we need to say we can’t do everything for everybody, and it doesn’t make sense,” said Washington radiologist Mark Klein, who recently performed a virtual colonoscopy on a 99-year-old woman. Klein said he considered not doing the procedure but decided to go ahead because he didn’t learn how old the patient was until she was lying on the table, having undergone the prep.

“The most important thing on any referral is the date of birth,” said Klein, who said he tries to talk some older patients and their doctors out of pursuing tests and treatments he considers overly aggressive. “The game is not finding things, it’s can you improve mortality? And if you do find something, it’s very hard for a doctor to say, ‘Don’t do anything.’ ”

While cancer screenings are most common, other tests are overused among the elderly, Klein and others say. They include cholesterol testing, which can lead to the prescription of statin drugs that require regular blood tests to check liver function; typically, cholesterol plaque takes years to accumulate, and statins confer only a modest benefit in the elderly.

Likewise, CT scans of the heart or whole body can unearth suspicious findings, such as lung nodules, which trigger a painful and risky lung biopsy, but often turn out to be benign.

First Mammogram — At 100

Schwartz, a professor at the Dartmouth Institute for Health Policy and Clinical Practice and an author of the 2011 book “Overdiagnosed,” said that overtesting may reflect in part the use of screening tests as a barometer of quality. “Unfortunately that’s how we’ve measured quality: Did they get tests? And doctors are being judged and paid accordingly. So all these crazy things get done that don’t help people.”

The American Cancer Society doesn’t support an upper age limit for colonoscopy or mammography, although the group does not endorse PSA testing.

The society’s director of cancer screening, Robert C. Smith, said he thinks underscreening is a bigger problem than overtesting. “As long as a patient is in good health and a candidate for treatment, they are a candidate for screening indefinitely,” he said.

But Smith says there are limits. He recalls the loud cheer at a medical meeting after it was announced that a 100-year-old woman had just undergone her first mammogram.

“Several of us were just shaking our heads in disbelief because it makes absolutely no sense whatsoever to put a 100-year-old woman through a mammogram,” he said.

Telling someone that screening is no longer necessary can be dicey, as California family physician Pamela Davis discovered when she advised her robust 86-year-old mother to stop getting mammograms and routine colon tests.

“I have many, many patients who are like my mother,” said Davis, who directs the family medicine residency program at Northridge Hospital Medical Center. “It’s not about shortchanging them” but about putting screening in context. “Part of keeping people healthy and elderly is keeping them away from the hospital. Sometimes I’ll say, ‘Well, if we do this heart test and then find something then you’ll need a procedure.’ And they’ll say, ‘Oh, I don’t want heart surgery.’ And I’ll say, ‘Why do the test?’”

Baltimore internist Mary Newman said she largely hews to the task force recommendations, and she jokes to patients that “after 85, everything’s optional.” She considers Medicare’s new annual wellness exam, part of the health law, a good time to raise the subject of screening. Newman said she focuses on concerns that geriatrics specialists say matter most in old age: maintaining hearing and vision, stabilizing blood pressure and addressing problems related to dementia and mobility.

In some cases doctors counsel against testing — but patients demand it. Alan Pocinki, an internist who practices in the District, said he tried to persuade an 80-year-old patient, a survivor of several heart attacks, to stop PSA testing. The man’s son, a Boston oncologist, agreed with Pocinki, but the patient insisted.

The elevated reading led to a biopsy, which found cancer. Pocinki said the patient contracted a serious infection from the biopsy, his cancer is being monitored through “watchful waiting,” and he has repeatedly said he wishes he’d never had the test. “He always tells me, ‘I know you told me not to do it.’ ”

Screening The Dying

Why do doctors continue to screen terminally ill patients? Smith, of the American Cancer Society, thinks a primary reason is that they avoid difficult conversations that would involve telling patients they won’t live long enough to benefit.

“Just because it’s hard for doctors doesn’t mean it’s not a conversation worth having,” said Camelia Sima, a biostatistician at Memorial Sloan-Kettering Cancer Center in New York and lead author of the 2010 JAMA study. Doctors may regard additional tests as relatively inconsequential, but Sima notes that they can cause additional pain and suffering in the form of biopsies, surgery and chemotherapy.

To Dartmouth’s Schwartz, the message for older patients, regardless of the state of their health, is essentially the same: “It’s not always in your best interest to do more or to keep looking. But we never seem to talk about the downside of testing.”

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Michelle Andrews answers your insurance questions:

My son was denied coverage on the basis that he had been drinking before going to the ER with a broken shoulder. Is drinking a legitimate reason for denial of coverage? John Johnson, Tucson, Ariz.

As of 2008, 36 states allowed insurers to exclude coverage for injuries related to alcohol and/or drug consumption, according to research from George Washington University’s Department of Health Policy at the School of Public Health and Health Services.

The practice dates to 1947 when, as a way to discourage drinking, the National Association of Insurance Commissioners adopted a model statute that excluded coverage of alcohol-related health claims. More than 40 states and the District subsequently passed such laws.

But as the benefits of drug and alcohol treatment programs became apparent, these laws were recognized as counterproductive, since they discouraged emergency department and other medical personnel from screening people for and counseling them about drug and alcohol abuse. In 2001, the NAIC reversed course and recommended that such laws be scrapped.

My husband had a stroke in December, and the insurance reps refused to discuss his account with me because they didn’t have his signature on a form, and he couldn’t tell them over the phone it was okay to talk to me. And it is MY insurance! They said they had to follow HIPAA [the Health Insurance Portability and Accountability Act, which protects patients' medical privacy]. Is this true? Name withheld, Lawrenceville, Ga.

It’s a common misperception by health-care providers and insurers that HIPAA prohibits them from discussing patients’ medical information with family members, says Deven McGraw, director of the health privacy project at the Center for Democracy and Technology, a civil liberties group that promotes health privacy.

“It’s not true; it has never been true,” she says. Unless the patient objects, such information can be shared with family members.

Advance planning documents can help avoid confusion and heartache, say experts. A living will spells out what if any measures you wish to have taken to prolong your life — being put on a breathing machine or on dialysis, for example. A health care proxy names the person you choose to make medical decisions for you in the event that you can’t do so yourself.

In addition, most states have surrogacy laws that assign decision-making responsibility to family members based on their relationship to the patient.

Typically, if someone is incapacitated, state law would assign decision-making to the patient’s spouse, says Jay Horton, clinical program manager at the Lilian and Benjamin Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York.

If there is no spouse, the laws spell out who would be assigned to make decisions instead, based on their relationship to the patient.

Our doctor recommended that my husband get a preventive colonoscopy since it had been five years since his last one. The doctor found two benign polyps and removed them. Our [health] plan was to cover 100 percent for a preventive colonoscopy. Because the doctor removed the polyps during the procedure, it is now not covered. We have to pay the deductible, and the balance owed. I can assure you that many, many people will not have this procedure done (as I will not) when they are made aware of the additional costs involved. Pam Nevin, Rutherfordton, N.C.

Under the new federal health law, Medicare beneficiaries and members of new private health plans starting this year can generally receive free colonoscopies to screen for colon cancer if they meet age and other criteria.

Unfortunately, like you, others have been hit with sometimes substantial charges if a growth or mass called a polyp is discovered during a routine screening colonoscopy they thought would be free.

Once a preventive procedure turns into a diagnostic procedure or other type of treatment, providers can charge you for it under the new law.

According to the interim final rules: “A plan or issuer may impose cost-sharing requirements for a treatment that is not a recommended preventive service, even if the treatment results from a recommended preventive service.”

Some experts have expressed concern that colonoscopy charges raise questions about what other newly free preventive services might incur similar hidden costs.

Fortunately, it doesn’t appear that it will be a widespread problem, says Stephen Finan, senior director of policy for the American Cancer Society’s Cancer Action Network.

The reason: Colonoscopies appear to be the only procedure covered under the new guidelines for free preventive care where both prevention and diagnosis happen during the same procedure.

Usually they’re separate, as when something suspicious turns up on a woman’s mammogram. In that case, a separate procedure such as a biopsy would be scheduled to diagnose the problem, says Finan. “Colonoscopy is a very unique scenario,” he says.

Got a question for Michelle Andrews to answer in a future column? khnquestions@kff.org

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Findings from two new studies show that death rates from colorectal cancer in the United States continue to fall, a trend that began more than two decades ago.

The mortality decline has been geographically uneven, however, with far greater decreases in the Northeast than in many other areas, particularly in a number of southeastern states.

Although the studies are ecologic in nature and can’t directly demonstrate a cause-and-effect relationship, authors of both studies agreed that substantial improvements in colorectal cancer screening rates have been the chief contributor to the national downward trend in mortality.

Other factors, such as reductions in smoking prevalence and better treatments, have also played a role, they noted.

Socioeconomic disparities that have been proven to influence cancer screening rates and the treatment of diagnosed cancers likely help explain the geographic discrepancies in cancer mortality rates, several researchers said.

“That’s a key point,” said Dr. Ahmedin Jemal of the American Cancer Society, who led one of the studies. “Poverty affects not only access to screening and treatment but also prevalence of known risk factors for colorectal cancer, including smoking and obesity.”

Disparities Drive Geographical Differences

In the first study, published online July 5 in Morbidity and Mortality Weekly Report, researchers from the Centers for Disease Control and Prevention (CDC) showed that the age-adjusted colorectal cancer death rate fell by 3 percent per year from 2003 through 2007, from 19 per 100,000 people to 16.7 per 100,000 people, yielding a difference of approximately 32,000 fewer deaths. The rate of new cases of colorectal cancer also declined during this period, the CDC reported, from 52.3 per 100,000 in 2003 to 45.5 per 100,000 in 2007.

Using data from the agency’s Behavioral Risk Factor Surveillance System phone survey, the CDC study showed that, nationally, the percentage of people who were screened for colorectal cancer according to commonly accepted clinical guidelines rose from 52.3 percent in 2002 to 65.4 percent in 2010.

Mortality fell furthest “in states with some of the highest screening prevalence,” wrote Dr. Lisa Richardson and her colleagues.

In the second study, Dr. Jemal and his colleagues, reporting in the July 7 Cancer Epidemiology, Biomarkers & Prevention (CEBP), identified significant geographic disparities in colorectal mortality rates. In the northeastern states of Massachusetts, Rhode Island, and New York (as well as Alaska) mortality fell more than 33 percent between 1990–1994 and 2003–2007. In many southern states, particularly along the Appalachian corridor, the decreases were much smaller; in Mississippi (as well as Wyoming), the rates were nearly unchanged between the early 1990s and mid-2000s.

The overall colorectal cancer mortality rate decline is welcome news, said Dr. Electra Paskett of the Ohio State University Research Foundation Comprehensive Cancer Center, a leading researcher on cancer health disparities. The higher mortality rates in the Appalachian corridor, however, were not a surprise, she continued. Her research group at Ohio State has been studying the problem for some time and is investigating ways to improve screening rates there. (See the box at the bottom of the page.)

“Detecting colorectal cancer early and getting it treated—that’s what affects mortality,” she said.

When it comes to screening uptake, the role of socioeconomic disparities can’t be ignored, Dr. Jemal and colleagues stressed. “Southern states have a larger proportion of the population that is poor and uninsured, among whom screening rates are lower,” they wrote.

Lower socioeconomic status, lower education levels, and lack of health insurance affect whether people get screened and whether they receive the appropriate follow-up and treatment after diagnosis, Dr. Jemal said in an interview.

For example, a 2010 study by NCI researchers showed that, among participants in the Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial who had been screened for colorectal cancer via sigmoidoscopy, black participants were substantially less likely to undergo a prescribed follow-up colonoscopy than white patients. Although study participants’ socioeconomic status was not known, black participants had lower education levels—which often correlate with lower socioeconomic status—than white participants.

Dr. Paul Doria-Rose of NCI’s Division of Cancer Control and Population Sciences (DCCPS) agreed with the study authors on the likely primary cause of the differences. “The disparities in colorectal cancer are well established at this point,” he said. “I think the regional differences we’re seeing reflect those disparities.”

Improving Screening Rates

A number of research groups are studying ways to improve screening rates for various cancers, particularly in populations for which notable disparities have been identified in cancer incidence and mortality and for whom barriers, such as lack of access to care, exist.

A major step forward came with the passage of the Affordable Care Act, which, as of January 2011, mandates that Medicare beneficiaries and individuals with new health insurance plans or policies beginning on or after September 23, 2010, receive certain recommended preventive health screenings, including those for colorectal and breast cancer, for free.

In addition, DCCPS staff have just finished reviewing applications for an NCI-funded initiative called Population-Based Research Optimizing Screening through Personalized Regimens, or PROSPR, that aims to improve the screening process for all cancers for which there are established, effective tests.

The aim of the initiative is “to take a holistic approach to the entire screening process, see where the shortcomings are, and identify ways to improve them,” Dr. Doria-Rose explained. “In many cases, we have screening tests that work. The biggest opportunities now are in getting more people to be appropriately screened.”

An Intervention Tailored to the Community

Working with several community-based coalitions in the Appalachian region of Ohio, Dr. Electra Paskett is leading a study aimed at reducing the high colorectal cancer death rates in that region by increasing screening.

Based on feedback from community leaders, the study’s primary intervention uses a decidedly low-tech tool. “They said that fancy things like the Internet and smart phones don’t work here,” Dr. Paskett explained. “The best thing to use, they said, is billboards.”

The billboards in some counties advertise the importance of getting screened, whereas billboards in the “control” counties encourage eating more fruits and vegetables. Phone surveys will be used to measure outcomes, such as awareness of the need for people 50 years of age and older to be screened and whether more people are being screened. Dr. Paskett and her research team are also working with community groups to help residents who are screened obtain appropriate follow-up care.

Interventions to improve screening awareness and uptake have to be tailored to target communities, Dr. Paskett stressed. “An approach that works in New York City may not work very well in rural Ohio,” she said.

The NCI Cancer Bulletin is an award-winning biweekly online newsletter designed to provide useful, timely information about cancer research to the cancer community. The newsletter is published approximately 24 times per year by the National Cancer Institute (NCI), with day-to-day operational oversight conducted by federal and contract staff in the NCI Office of Communications and Education. The material is entirely in the public domain and can be repurposed or reproduced without permission. Citation of the source is appreciated.

Maps: Adapted and reprinted by permission from the American Association for Cancer Research: D Naishadham et al., State Disparities in Colorectal Cancer Mortality Patterns in the United States, Cancer Epidemiol, Biomarkers & Prev, 2011, 20(7); 1296-302.

This story was produced in collaboration with

For years, doctors have urged patients over the age of 50 to get colonoscopies to check for colorectal cancer, which kills 50,000 Americans a year. Their efforts were boosted last year by the federal health care law, which requires that key preventive services, including colonoscopies, be provided to patients at no out-of-pocket cost.

But there’s a wrinkle in the highly touted benefit. If doctors find and remove a polyp, which can be cancerous, some private insurers and Medicare hit the patient with a surprise: charges that could run several hundred dollars.

That’s because once the doctor takes action, the colonoscopy morphs from a preventive test into a treatment procedure.

The situation is causing confusion among doctors and the insurance industry. And it’s raising concerns among the American Cancer Society, the American College of Gastroenterology, and other physician and patient advocacy groups that consumers could be unprepared for the extra expenses, which can include deductibles, copayments and coinsurance. Medicare and at least two large private insurers, Kaiser Permanente, with 8.6 million members across the country, and Health Net, with 2.9 million members in several Western states, are charging the fees. Seven other major insurers said they would not charge enrollees.

Adding to the uncertainty is the high-profile campaign by administration officials—including President Barack Obama and his wife, Michelle — to drum up support for the health law by highlighting the guarantee of free preventive care.  “If you join or purchase a new plan, the insurance company will be required to provide preventive care like mammograms, colonoscopies, immunizations, pre-natal and baby care without charging you any out of pocket costs,” the president wrote to supporters in an e-mail marking the six-month anniversary of the law.

Although colonoscopy is the most obvious example of the confusion, it is not the only one. Dr. Roland Goertz, president of the American Academy of Family Physicians, said it remains unclear how doctors and insurers are supposed to handle patient cost sharing for preventive checkups that turn up medical findings such as a skin lesion or breast lump needing a biopsy or excision during that visit.

Last July, the administration released regulations for insurers on the preventive care benefits. They prohibit health plans from imposing cost sharing for preventive services that were part of a visit to a doctor that was focused on prevention, if the services are not billed separately from the office visit.

However, an insurer “may impose cost-sharing requirements for a treatment that is not a recommended preventive service, even if the treatment results from a recommended preventive service.”

Robert Zirkelbach, a spokesman for America’s Health Insurance Plans, said the colonoscopy issue illustrates the need for a clarification from administration officials about services such as colonoscopy where physicians provide both preventive and therapeutic care in the same visit.

In written comments on the federal regulation last year, his group said physicians must understand how to appropriately code preventive services so that insurers know when to waive the deductible and coinsurance.

The federal health law specifies that insurers must fully cover services that have earned an A or B rating from the U.S. Preventive Services Task Force, plus immunizations recommended by the Centers for Disease Control and Prevention, and preventive care for women and children recommended by the federal Health Resources and Services Administration.

That coverage rule took effect last September. It applies to an estimated 31 million Americans in group health plans this year and 10 million in individual plans, and will cover 88 million by 2013.

To qualify for the free coverage, patients must go to providers in their health plan network.

Colonoscopy is on the U.S. Preventive Services Task Force’s recommended list, with an A rating, for all adults 50 and older. It checks for colorectal cancer, which is preventable with screening and highly treatable if caught early. A National Institutes of Health report last year said cost sharing likely affects people’s willingness to have such screening.

If a patient with no symptoms goes in for a screening colonoscopy and the gastroenterologist finds no pre-cancerous or cancerous polyps, everyone agrees that Medicare and commercial insurers are required to cover the expensive test 100 percent. But when the doctor removes a polyp, some insurers apply charges– meaning the insurer pays less of the bill.

Critics say charging cost-sharing defeats the purpose of the law. Studies show that colonoscopies find a polyp in at least 25 percent of men and 15 percent of women. Thus, many people face financial “post-procedure shock,” according to medical and consumer groups that are lobbying to stop insurers and Medicare from applying cost-sharing in this situation.

“We raised this with insurers and they wouldn’t budge,” said Dr. David Johnson, past president of the American College of Gastroenterology. Since the law took effect, “it’s still an ongoing problem,” he added.

Medicare is waiving the deductible for its beneficiaries but charges patients a copay of $186 plus 20 percent of the doctor’s fee, according to a Medicare spokeswoman.  She said there have been few complaints from beneficiaries about the policy.

In addition to Kaiser Permanente and Health Net, Regence BlueShield, which has 3 million enrollees in four Northwest states, initially said it charged members the deductible and coinsurance if a colonoscopy found and removed a polyp. But Regence spokeswoman Rachelle Cunningham subsequently said that was a mistake, there should be no cost sharing charges, and the company was “re-evaluating and re-processing some claims.”

A Health Net spokeswoman said that in an effort to help enrollees understand the situation, her company has trained its customer service staff to better explain colonoscopy coverage. Kaiser Permanente officials said the insurer “strongly supports” the health law’s guarantee of preventive services but when “services extend beyond preventive and require diagnostic or therapeutic services” the cost sharing will apply, depending on the specific plan details. (KHN is not affiliated with Kaiser Permanente.)

Aetna, Cigna, Group Health Cooperative, Humana, United Healthcare and Wellpoint/Anthem all said members pay no cost-sharing when a polyp is found. Assurant refused to comment.

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This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.