Many Cancer Patients Fail to Get the Best Treatment : Health: Access to technology is limited by a disjointed care system unable to keep pace with research advances.
Cancer is by nature unfair, capriciously stalking children and grandparents, corporate presidents and clerks, super athletes and shut-ins. Still, there is a sense that this most feared of afflictions is an act of fate, rather than anyone’s fault.
The same cannot be said, however, for the access to cancer treatment. Too often, patients are left to their own devices in the search for the best possible medical care, cancer experts and patient advocates say.
Forced to make their way through a morass of options, patients find themselves physically and emotionally exhausted by the very search for cancer treatment. And this, some say, has nothing to do with fate, but is the sad consequence of a disjointed, unwieldy treatment system unable to keep pace with almost continuous research advances.
“Technology and the ability to access technology are miles apart, particularly if you’re not well-endowed with good health insurance,” says Selma Schimmel, founder and director of Vital Options, a Studio City-based support organization for young adults with cancer.
Dr. Bruce Chabner, director of the National Cancer Institute’s division of cancer treatment, acknowledges that many advances that spring from government-funded research do not become available to everyone who could benefit from them.
“People hear about all the wonderful things scientists are finding out and doing and they say: ‘Where are the applications?’ There is a large amount of our population that doesn’t have access to these things,” he says.
The problem is documented in a disturbing 1988 report by the U.S. General Accounting Office showing that many cancer patients do not receive up-to-date treatments.
The study showed that 37% of women with premenopausal breast cancer, 25% of patients with small-cell lung cancer and 60% of patients with rectal cancer did not receive the best possible treatment. Fully half of the breast cancer patients who should have received adjuvant therapy (combinations of surgery, chemotherapy and radiation) did not get it.
Age and economics have put the elderly and minority groups at a particular disadvantage, says Dr. Martin Abeloff, president of the American Society of Clinical Oncology.
For example, the five-year cancer survival rate for blacks stands at 38.2%, well below the 52% rate for whites.
Moreover, the elderly are often undertreated by physicians who worry, often needlessly, that the side effects of the treatment may do their patients more harm than good, says Dr. Gregory Curt, clinical director at the National Cancer Institute.
The National Cancer Act, passed 20 years ago as part of the country’s newly declared “war on cancer,” aimed in part to enable greater access to state-of-the-art therapies. Among other things, the act created 54 federally accredited cancer centers around the country to speed up the dissemination of advances and coalesce vast teams of leading cancer researchers and clinicians.
In addition, the NCI sponsors a toll-free number, 1-800-4-CANCER, to provide consumers with information from a computerized cancer data service called the Physicians Data Query. Called a “living textbook” by cancer officials, the service provides a caller with the latest information on treatment options, including clinical trials, along with a list of nearby physicians and hospitals offering those treatments. The PDQ is updated monthly by 100 editors.
But many patients are not aware of the information services that the NCI and the American Cancer Society provide, experts say.
“I would say 90% of patients don’t have the first idea of the kinds of information resources that the NCI can provide,” says the NCI’s Curt.
But, says Curt, much of the burden in locating the best care falls on the patient.
“You make it your business to know about this disease, learning what treatment options are available, what the risks and benefits are,” he says. “What that does is give a patient a vocabulary to ask relevant questions.”
Patients who do not become informed are rolling the dice on their lives, says Schimmel.
“People don’t know where to seek information,” she says. “At the time of diagnosis, one is rendered totally helpless and paralyzed. Panic overrides everything else. The medical consumer goes to the doctor with a lot of faith, but that doesn’t mean you’re getting the best therapy.”
Panic was certainly the dominant emotion for Mary Jo Siegel in the days after her diagnosis of cancer last February.
Only 41 and the mother of three teen-agers, she was told she had non-Hodgkin’s lymphoma, a slow-growing cancer of the lymph system that patients can live with for years but is often incurable.
Siegel underwent surgery to remove the primary tumor that was blocking her intestines and causing pain. Several doctors then advised her to “wait and watch” to see if new symptoms of the cancer emerged before undergoing further treatment. One doctor suggested she undergo radiation therapy.
“They all said it was my decision,” says Siegel, of Pacific Palisades. “I thought if it was my decision, I should get another opinion.”
Siegel located two of the country’s top oncologists for non-Hodgkin’s lymphoma. One, at Stanford University, told her to do nothing until her symptoms returned. But an oncologist at the reknowned Dana-Farber Cancer Institute in Boston suggested she undergo an experimental procedure involving high-dose chemotherapy along with bone marrow transplantation. The sooner, the better, he said.
Today, Siegel is still struggling to choose between those two radically different approaches. “You want to put yourself in the hands of these people, but you go home at night and you realize you’re all by yourself,” she says.
Conflicting opinions among experts are inevitable as research expands options, experts say. But even the latest treatments do not come with assurances that they will improve a cancer patient’s chance for a cure.
“Advances which are found today will require years of study before you know precisely which patients will benefit from that advance,” Curt says.
For example, almost a third of melanoma patients respond successfully to the immunological therapies interleukin-2 and lymphokine-activated killer cells (LAK), he says. “But we don’t know why the other 70% don’t respond.”
Likewise, the earlier detection of breast cancer has created widespread confusion about whether women with early-stage breast cancer should undergo mastectomy or a lumpectomy, in which the tumor is removed but the breast is left intact, and to what extent radiation and chemotherapy should be used, he says.
Abeloff says that conflicting opinions are “not necessarily bad. I tell patients that the good news is they are getting more options. The bad is that it puts the burden (to choose) back on their shoulders.”
Choosing where to obtain cancer treatment can be equally important, experts note.
Because cancer treatment can be complex and require the talents of many specialists, some patients would fare best at NCI-designated centers or large teaching hospitals--rather than community hospitals, experts say.
NCI centers and teaching hospitals are also more likely to offer clinical trials, where the latest treatments are under evaluation by the federal government for safety and effectiveness.
For patients with cancers that have poor survival rates, high relapse rates or for whom standard treatments have failed, clinical trials offer another chance, say cancer experts.
In clinical trials, a patient is usually randomly assigned to receive a new treatment under investigation--such as biological drugs or gene therapy--or the most effective established treatment. The purpose of such a study is to see which treatment is more effective, and patients must take the chance that they may not get what proves, in the final analysis, to be the most effective treatment.
Because the newest treatments are not available elsewhere, clinical trials may be “the way to get the best therapy,” says Dr. E. Carmack Holmes, director of the Jonsson Cancer Center surgical oncology program at UCLA. For example, he says, the use of biological therapies such as interleukin-2 and LAK are still available only in clinical trials. The number of cancer-related clinical trials under way has grown compared to only a decade ago, even though only 1.5% to 2% of cancer patients enroll in clinical trials (about 25,000 patients per year).
Finding the most appropriate cancer treatment is only half the battle, however. Patients often face a second battle in persuading their health insurers to pay for their care.
Patient advocates and cancer experts across the country say that health insurance problems constitute the biggest obstacle to getting the best care.
While the crisis in health insurance is pervasive in every area of medicine, the pain of shrinking insurance coverage is especially acute in cancer therapy where treatments are often complex, long term, costly and more likely to involve therapeutic strategies that are still considered investigational, says Abeloff.
A Gallup survey co-sponsored by the NCI reported earlier this year that more than half of 200 doctors questioned had problems providing their treatment-of-choice to patients because insurers refused to pay for the therapies. The survey concluded that roughly one in eight cancer patients never got his physician’s preferred treatment because of reimbursement obstacles.
For example, therapy described as experimental or investigational often signals to insurers that the treatment is not a sure thing. But, Abeloff says: “In the area of cancer there is little doubt that the finest state-of-the-art treatment is provided in clinical trials,” which are investigational by nature.
Patient advocates also complain bitterly that while one arm of the federal government, the NCI, advocates clinical trials as possibly the best chance for a cancer cure, another arm of the government, the Health Care Financing Administration, which runs Medicare and Medicaid, routinely refuses to pay for those treatments at an investigation stage.
Schimmel, who hears dozens of complaints each week about insurance coverage, says another widespread problem is that many insurers do not reimburse for cancer drugs when physicians administer them for purposes not yet approved by the Food and Drug Administration, a dilemma called off-drug labeling.
Patient advocates also decry the refusal by many health insurers to cover cancer screening tests, such as mammograms, which can detect cancer in its earliest stages when it is most curable, easily treated and less costly.
“We know early detection results in the best possible treatment and cure,” Schimmel says. “But if people can’t get access to these tests, they’re defeated from the beginning.”
For the nation’s uninsured, the outlook is especially grim. Too often, by the time government-funded health care becomes available, cancers have metastasized and the odds for cure are reduced, the NCI’s Curt acknowledges. Or they may live far from a major cancer center and have no idea where to go for optimal care.
For these reasons, younger, wealthier people in major metropolitan areas are likely to obtain the best care, say cancer experts, while the poor, minorities, elderly and people in rural areas are least likely to receive the best of what medicine has to offer.
Other patients discover a nightmare of red tape trying to get reimbursement while their lives hang in the balance.
When Brent McCrae, 30, began having stomach pain in October, 1988, his insurer did not pay his medical bills because, unbeknown to McCrae and other policyholders, his employer had not paid the group premium and the policy had been canceled. Coincidentally, McCrae changed jobs and signed up for a new health insurance plan. By the time he was found to have colon cancer, in January, 1989, his new insurer refused to pay his bills claiming he had a pre-existing condition that the company was not responsible for.
McCrae began fighting both insurers while mailing $25 payments each month to his health-care creditors as a sign of good faith. But five weeks into his chemotherapy regimen and with $100,000 in bills outstanding, McCrae’s oncologist called McCrae into his office.
“He put his hand on my knee and said: ‘Brent, I’m sorry, I can’t be your banker any longer,’ ” McCrae recalled.
The oncologist halted McCrae’s chemotherapy, forcing him to wait another five weeks before he could join an HMO that agreed to pick up his treatment.
He later won a settlement with his first two insurance companies to cover his medical bills.
“It got to the point where I, literally, considered suicide,” says the entertainment executive, who is still struggling with the effects of two surgeries that removed most of his colon. “Hanging over my head was $100,000 of outstanding medical bills.”
Too often, says Schimmel, individuals stunned with a diagnosis of cancer find that the key question “Is there a cure?” goes hand-in-hand with “Can I afford a cure?”
“On the consumer end, there is this feeling of victimization that is greater than your cancer,” she says, after a morning haggling with an insurance company on behalf of another Los Angeles man who has been denied reimbursement. “People tell me, I can’t begin to deal with eradicating my disease until I deal with the ‘business’ of cancer.”
Cancer Centers
* COMPREHENSIVE CENTERS: These 24 centers are the major components of the National Cancer Institute’s network of cancer resource facilities. After having met specific criteria, these institutions are designated by the NCI as regional and national hubs for cancer research, training and treatment.
* CLINICAL: Nationwide, there are 16 NCI clinical centers. These facilities conduct research and treat patients.
* Other NCI facilities include 15 BASIC centers that conduct primarily laboratory research and rarely treat patients along with two CONSORTIUM centers made up of two or more institutions in a region which operate cancer control and research programs.
COMPREHENSIVE CENTERS
1) University of Alabama, Birmingham, AL
2) University of Arizona, Tucson
3) USC, Comprehensive Cancer Center, Los Angeles
4) UCLA, Jonsson Comprehensive Cancer Center, Los Angeles
5) Yale Comprehensive Cancer Center School of Medicine, New Haven, CT
6) Sylvester Comprehensive Cancer Center, University of Miami Medical School, Miami
7) Johns Hopkins Oncology Center, Baltimore
8) Dana-Farber Cancer Institute, Boston
9) Comprehensive Cancer Center of Metropolitan Detroit, Wayne State University, Detroit
10) Mayo Comprehensive Cancer Center, Mayo Clinic, Rochester, MN
11) Norris Cotton Cancer Center, Dartmouth-Hitchcock Medical Center, Hanover, NH
12) Memorial Sloan-Kettering Cancer Center, New York
13) Roswell Park Memorial Institute, Buffalo, NY
14) Columbia University Cancer Center, College of Physicians & Surgeons, New York
15) Duke Comprehensive Cancer Center, Durham, NC
16) Lineberger Comprehensive Cancer Center, University of North Carolina School of Medicine at Chapel Hill, Chapel Hill, NC
17) Comprehensive Cancer Center of Wake Forest University Bowman Gray School of Medicine, Winston-Salem, NC
18) Comprehensive Cancer Center, Arthur G. James Cancer Hospital Ohio State University, Columbus, OH
19) Fox Chase Cancer Center, Philadelephia
20) University of Pennsylvania Cancer Center, Philadelphia
21) Pittsburgh Cancer Institute, University of Pittsburgh, Pittsburgh, PA
22) M.D. Anderson Cancer Center University of Texas, Houston, TX
23) Fred Hutchinson Cancer Research Center, Seattle
24) University of Wisconsin Comprehensive Cancer Center, Madison, WI
CLINICAL
1) UC San Diego Cancer Center, San Diego
2) City of Hope, Cancer Research Center Beckman Research Institute, Duarte
3) University of Colorado Health Sciences Center, Denver
4) Lombardi Cancer Research Center, Georgetown University Medical Center, Washington, D.C.
5) University of Chicago Cancer Research Center, Chicago
6) University of Michigan Cancer Center, Ann Arbor, MI
7) Cancer Research Center, Albert Einstein College of Medicine, Bronx, NY
8) Cancer Center, New York University Medical Center, New York
9) University of Rochester Cancer Center, Rochester, NY
10) Case Western Reserve University Ireland Cancer Center, Cleveland
11) Cancer Center, Brown University , Roger Williams Medical Center, Providence, RI
12) St. Jude Children’s Research Hospital, Memphis, TN
13) Institute for Cancer Research and Care, San Antonio
14) Utah Regional Cancer Center, University of Utah Medical Center, Salt Lake City
15) Vermont Regional Cancer Center, University of Vermont, Burlington, VT
16) Massey Cancer Center, Medical College of Virginia, Virginia Commonwealth Unversity, Richmond, VA
BASIC
1) La Jolla Cancer Research Foundation, La Jolla
2) Armand Hammer Center fo Cancer Biology, Salk Institute, San Diego
3) CalTech, Biology Division, Pasadena
4) Purdue Cancer Center, Purdue University, West Lafayette, IN
5) The Jackson Laboratory, Bar Harbor, ME
6) Worcester Foundation for Experimental Biology, Shrewsbury, MA
7) Center for Cancer Research, Massachusetts Institute of Technology, Cambridge, MA
8) Eppley Institute, University of Nebraska, Omaha, NE
9) Cold Spring Harbor Laboratory, Cold Spring Harbor, NY
10) New York University Medical Center, New York
11) American Health Foundation, New York
12) Wistar Institute Cancer Center, Philadelphia
13) Fels Research Institute Temple University School of Medicine, Philadelphia
14) Cancer Center, University of Virginia Medical Center, Charlottesville, VA
15) McArdle Laboratory for Cancer Research University of Wisconsin, Madison, WI
CONSORTIUM
1) Illinois Cancer Council, Chicago
2) Drew-Meharry-Morehouse Consortium Cancer Center, Nashville, TN
In the Los Angeles area, three NCI-designated facilities are available to cancer patients: at USC, UCLA and the City of Hope. The NCI supports basic cancer research at CalTech.
In the San Diego area, UCSD is an NCI-designated cancer offering treatment while basic research is supported by the NCI at the Salk Institute and La Jolla Coancer Research Foundation.
SOURCE: National Cancer Institute
Compiled by Times researcher Michael Meyers
Patient Information
The National Cancer Institute and American Cancer Society operate distinct, non-competing, free information services to the public. Both provide information on the disease, risks, prevention and early detection. Each service offers some distinct services. NCI
The National Cancer Institute will provide people who call 1-800-4-CANCER with highly technical information about the disease from a computerized cancer data service called the Physicians Data Query. The service can provide a caller with:
* The latest information on treatment options.
* Information on clinical trials, along with a list of nearby physicians and hospitals offering those treatments.
* A list of all NCI-designated cancer centers.
* Referrals to hospitals in their area that may not be NCI centers but which have received the American College of Surgeons approval rating for their cancer programs, another measure of quality assurance.
* The phone lines operate from 6 a.m. to 7 p.m. PST. The lines are frequently busy, so be prepared to wait. Calls can be answered in English or Spanish.
ACS
By dialing 1-800-ACS-2345, callers can receive information on all ACS-sponsored programs. In addition, the ACS provides information on services for cancer patients, rehabilitation, and professional and public educational activities.
* Phone information: Call 1-800-ACS-2345. Phone hours are 6 a.m. to 6 p.m. PST. Inquiries can be addressed in Spanish, English and Mandarin.
HOSPITAL PERFORMANCE
Cancer patients can also determine whether their physician or local hospital is up-to-date on top cancer treatments by asking whether the facility contributes to the National Cancer Data Base, a new service sponsored by the American Cancer Society that collects and summarizes statistics on cancer treatment from hospitals around the country.
* While the NCDB information isn’t directly available to patients, individuals undergoing treatment at a particular facility can ask if the hospital belongs to the service and has compared its treatment to that of the data base.
VERIFYING PHYSICIAN’S STATUS
You can verify that a physician is a board-certified oncologist by calling the American Board of Medical Specialists:
* Phone information: Call 1-800-776-2378 between the hours of 5 a.m. to 3 p.m. PST.
INSURANCE COVERAGE
For information on health insurance and cancer treatment, the Assn. of Community Cancer Centers offers a brochure entitled “Cancer Treatments Your Insurance Should Cover.”
* Address information: The free brochure can be obtained by writing to: ACCC, 11600 Nebel St., Suite 201, Rockville, MD 20852.
