Contact: Andrea Greif, (914) 821-8958

WHITE PLAINS, NY - 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 services.

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 problem.

"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 Kornhaber and Drs. Cortes and Leonard, please contact Andrea Greif at (914) 821-8958.