Survey Reveals Blood Cancer Patients Not Being Directed to Clinical Trials Despite Their Importance in Developing New Therapies

Jan 31, 2006, 00:00 ET from The Leukemia & Lymphoma Society

    WHITE PLAINS, N.Y., Jan. 31 /PRNewswire/ -- Blood cancer patients need to
 ask their doctors about clinical trials because more than half of those seen
 by a hematologist or oncologist say their specialist never informed them about
 the possibility of participating in a trial, according to a survey released
 today by The Leukemia & Lymphoma Society.
     The survey, Unequal Access: Understanding Racial, Ethnic, Economic and
 Geographic Disparities in the Treatment and Care of Patients with Blood-
 Related Cancers, revealed that a majority of specialists are not volunteering
 information about clinical trials to their patients.
     "This survey is further proof that patients need to be their own advocates
 because in many instances their doctors are not telling them about clinical
 trials," said Robin Kornhaber, the Society's senior vice president of patient
     Kornhaber said the findings were troubling because clinical trials are
 such a crucial step in the development of new treatments and are often the
 only remaining hope for patients.
     "For many cancer patients, clinical trials present an opportunity to take
 advantage of promising new treatments not yet available and may offer new hope
 for patients when the standard treatments are not effective," Kornhaber said.
     She added that most types of leukemia, lymphoma and myeloma are not
 curable, yet many promising therapies are being tested in clinical trials to
 assess if they will delay the progression of disease and/or reduce side
 effects compared to standard therapies.
     Kornhaber said there are a number of barriers that may lead doctors to
 avoid a discussion about trials. The primary factor is economic, she said.
 Kornhaber said questions about insurance reimbursement and uncertainty about
 the risks make some patients hesitant to participate in trials. But she said
 one of the main reasons doctors don't discuss them in the first place is worry
 about the potential financial impact on their own practice.
     "They fear they might lose their patients to the institution conducting
 the trial, even though this may not actually be the case," she said.
 "Oncologists might also avoid participating in clinical trials due to added
 administrative burdens and costs to their practice, factors that frequently
 prevent physicians from being able to conduct clinical trials in the community
 centers where they practice."
     John Leonard, M.D., clinical director, Center for Lymphoma and Myeloma,
 Weill Medical College of Cornell University and New York Presbyterian
 Hospital, agreed that inadequate participation in clinical trials is a major
     "Hematologists and oncologists may be unable or reluctant to dedicate the
 time and resources required to be part of a clinical trial, in part due to the
 extra effort required to provide explanation and to follow the necessary
 guidelines," said Dr. Leonard. "Participating in a clinical trial can require
 more detailed monitoring than a patient would generally receive under standard
 care, though this can often benefit the patient. Also, community doctors may
 be less specialized, caring for patients with many different tumor types
 rather than focusing in a specific area, making involvement in a disease-
 specific clinical trial less practical."
     Jorge Cortes, M.D., Department of Hematology, The University of Texas M.D.
 Anderson Cancer Center, Houston, agreed.
     "Community doctors may be uncertain about the objectives of the trial in
 question or may simply lack the awareness of the opportunities and
 requirements to participate," he said. "When unable to offer clinical trials
 directly through their practice, some oncologists may not recognize the
 participation in clinical trials as a partnership between them and the
 academic healthcare team working for the good of the patients. In reality, a
 successful clinical trial requires both a good community doctor and a good
 academic healthcare group if it is really going to help patients."
     The survey indicated that doctors were less likely to direct older cancer
 patients to clinical trials even though blood cancer is most common in that
 population and many clinical trials are designed to address the special
 challenges of treating older patients. Of survey respondents over the age of
 75, 74 percent said their specialist did not speak to them about participating
 in clinical trials.
     Women, too, were underrepresented. More than 60 percent of female patients
 said they did not have a conversation with a specialist about participating in
 a trial, while just under 50 percent of men said they did not have such a
 conversation. Of those respondents who said they were not informed about
 clinical trials, 25 percent said they would have wanted the information.
     Dr. Leonard also pointed out that the survey's findings are particularly
 striking when examined in contrast to the successful development of pediatric
 cancer therapies that are a direct result of large-scale participation of
 children in clinical trials.
     "Forty years ago, the survival rate for children with acute lymphocytic
 leukemia was only 14 percent," he said. "Today, thanks to successful
 treatments that would not have been possible without clinical trials, more
 than 85 percent of children survive this form of leukemia," Dr. Leonard said.
     To educate patients and their caregivers about the importance of clinical
 trials, the Society is unveiling an education program, Paving the Way for
 Progress: Clinical Trials in Blood Cancer.  Each of the Society's 64 chapters
 in the United States will offer the program, which features local experts
 discussing how clinical trials work, why they are important and the measures
 taken to protect patients. The program is being tested in seven chapters this
 winter with plans for a national-rollout this summer.
     Brookdale Center on Aging of Hunter College and Bellevue-Hunter School of
 Nursing, City University of New York conducted the survey for Society this
 fall. The Society commissioned the study to determine how to improve access
 and quality of health services for blood cancer patients from underserved
 segments of the population, including older patients and women.
     To receive a copy of the survey or to arrange interviews with Robin
 Kornhaber and Drs. Cortes and Leonard, please contact Andrea Greif at
 (914) 821-8958.

SOURCE The Leukemia & Lymphoma Society