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Leukemia & Lymphoma Society Survey Finds ‘Alarming’ Gap in Public Knowledge about Hematologic Cancers

doi: 10.1097/01.COT.0000437210.67364.12

A survey commissioned by the Leukemia & Lymphoma Society (LLS) found what it called an alarming gap in knowledge about hematologic cancers. Fewer than half (46%) of 1,007 adults polled in the survey knew that leukemia, lymphoma, myeloma, and other blood cancers are the third leading causes of cancer death in the U.S. (i.e., after lung cancer and other respiratory cancers, and colorectal and other GI cancers).

The results showed that:

  • 82 percent of those surveyed said they were surprised to learn that more than one million U.S. adults are currently living with a blood cancer;
  • 87 percent were surprised by the statement that about every four minutes one person in the U.S. is diagnosed with a blood cancer;
  • 86 percent were surprised when told that approximately every 10 minutes someone in the U.S. dies from a blood cancer.
  • 76 percent said they believe that it's up to the government, private industry, and drug companies to fund research for all cancers, including hematologic cancers.
  • 86 percent they hadn't realized that certain promising treatments for some chronic diseases, including rheumatoid arthritis, were initially tested and FDA-approved as treatments for blood cancers; and
  • Nearly all those surveyed (97%) said they think it important for all blood cancer patients to have access to potentially life-saving treatments.


The survey was conducted online for the organization by Russell Research at the end of July; the margin of error was considered to be ± 3.1 percentage points.

“We conducted this survey to create awareness about blood cancers, and to drive home the need to focus on cures and access to therapies for blood cancer patients,” LLS CEO and President John Walter said in a statement. “As there are no means of preventing or early detection for most blood cancers, we must focus on cures.”

Added LLS Chief Policy and Advocacy Officer Mark Velleca, MD, PhD: “Therapies that don't make it to patients can't help them. A key LLS priority is ensuring access to quality, affordable, coordinated care for blood cancer patients. With the looming implementation of the Affordable Care Act, LLS is uniquely positioned to be the voice for blood cancer patients, by providing education and guidance to patients as they navigate the new state exchanges. LLS has a strong presence in Washington, advocating for patients directly with national and state policy makers.”

The Society recently announced that it has raised some $200 million in funding for a co-pay assistance program, which was started in 2007 and has now helped approximately 36,000 patients, Walter said.

“Despite progress, more than a third of blood cancer patients still do not survive five years after their diagnosis, so more funding is needed to advance research, ensure access to treatments, and help save more lives. I'm gratified that nearly all adults polled agree it's just as important to fund cures for blood cancers as it is for other types of cancers.”

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Survey of NHL Survivors

Meanwhile, a new study of non-Hodgkin lymphoma survivors' willingness to discuss health-related quality-of-life concerns with their follow-up care physicians found a wide variety in such willingness: Overall, 94, 82, 76, 43, and 49 percent of survivors said they would initiate discussions of physical, daily, emotional, social, and sexual functioning, respectively.

The study, led by Neeraj K. Arora, PhD, Research Scientist and Program Director of the National Cancer Institute's Outcomes Research Branch and available online ahead of print in the Journal of Clinical Oncology (doi: 10.1200/JCO.2012.47.6705013), found that survivors who indicated their physician “always” spent enough time with them or rated their care as “excellent” were more willing to discuss such problems. Similarly, survivors reporting poorer physical health were less willing to discuss their daily functioning problems.

The results also found that men were more willing to discuss sexual problems than women were; and one in three survivors cited “nothing can be done” as a reason for not discussing daily functioning problems, and at least one in four cited “this was not their doctor's job” and a preference to “talk to another clinician” as reasons for not discussing emotional, social, and sexual functioning.

“To deliver cancer care for the whole patient, interventions that facilitate survivor-clinician communication about survivors' health-related quality of life are needed,” the researchers concluded.

© 2013 by Lippincott Williams & Wilkins, Inc.
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