Cancer Patients Unaware of Personalized Medicine Choices

Zosia Chustecka

September 30, 2012

September 30, 2012 (Vienna, Austria) — Although the cancer field is marching on toward personalized medicine, with drugs being targeted to specific tumors, many patients are unaware that this revolution is taking place, a new survey shows.

"Clearly, there remains a need for patients to be better informed about personalized medicine, which is a shared responsibility amongst the multidisciplinary healthcare team, patient support groups, and the media," said Sabine Tejpar, MD, University Hospital of Leuven, Belgium. She was presenting the results of the survey here at the 2012 European Society for Medical Oncology (ESMO) Congress.

The survey was conducted by telephone and involved 811 patients from Argentina, China, France, Germany, Italy, Spain, and the United Kingdom. These patients had been diagnosed in the last 5 years with late-stage breast cancer (n = 164 patients), stage 3 or 4 non-small cell lung cancer (n = 157), or metastatic colorectal cancer (n = 490).

All of these cancer types have targeted therapies for certain patient subgroups: for instance, in breast cancer, there is trastuzumab (Herceptin, Genentech) for tumors that are HER2+ and hormonal therapy for breast cancer that is ER+; in NSCLC, there is erlotinib (Tarceva, Osi Pharmaceuticals) and gefitinib for tumors that are EGFRm+ and crizotinib (Xalkori, Pfizer) for tumors that have the ALK rearrangement. In colorectal cancer, there is cetuximab (Erbitux, Imclone) and panitumumab (Vectibix, Amgen), which is also for tumors of KRAS wild type.

For patients to benefit from these targeted therapies, a tumor sample must be sent for analysis, and this biomarker analysis can take 1 week or longer.

The survey revealed that most patients (74%) would be prepared to delay treatment for 2 weeks or longer in order to undergo additional tumor testing, in the hope that they may benefit from one of these targeted therapies. In addition, the majority of patients would allow hospitals to retain their tumor samples for future research, Dr. Tejpar reported.

"It was really striking that participants were willing to allow hospitals to retain their tumor samples even if this didn't directly relate to their own treatment. It shows that they want to advance research and help others with the disease," Dr. Tejpar said.

Of concern, however, was the finding that 32% of patients taking part in this survey were not aware that personalized medicine was available for their cancer. "There remains considerable scope for physicians and support groups to better inform patients that not all tumors are the same and that established and emerging tests may be able to determine which treatments may be the most effective for their particular tumor," the authors concluded.

Difficult Conversations

"I was not surprised by this finding," Dr. Tejpar commented. "This is a difficult conversation for a doctor to have with a patient," she said, and she suspects that many clinicians will hesitate before starting a discussion about personalized medicine. It involves asking the patient for a biopsy, but some of the biomarkers are rare, and patients have only a small chance of being suitable for a targeted treatment. It can be quite time consuming to explain all of this, and it can be disappointing for patients if it turns out that they do not have the biomarker that makes them eligible for the treatment.

However, she added, this is now evidence-based medicine, and "so I would urge clinicians to go ahead and have this conversation."

"It is a difficult conversation," agreed Jolanta Gore-Booth, founder and president of EuropaColon, a patient advocacy organization for colorectal cancer. Often there is a lot of hype surrounding a new targeted drug, and it can be difficult to explain to patients why they are not eligible. Another issue in European countries is that even if the patient is eligible and the drug is approved, costs may not be reimbursed, she said.

"Personalized medicine can be a really confusing concept for the public to get to grips with," Gore-Booth commented. "We need to improve public education and the way it is delivered."

"Cancer patients have a right to know about personalized medicine," she said, because "such knowledge ultimately has the power to influence their overall survival."

Speaking at a press conference ahead of a presentation at the ESMO patient seminar, Gore-Booth said that the promise of personalized medicine is to deliver "the right treatment for the right patient at the right time."

"But the reality is a little different," she said. "Between 2000 and 2009, there have been only 29 new cancer drugs and only 6 predictive markets in only 3 tumor types," said.

"Actually, this is good progress," commented Josef Tabernero, MD, head of medical oncology at Val d'Hebron Hospital, Barcelona, Spain, who was moderating the press conference.

Dr. Taberno is also chair of the ESMO 2012 Scientific Committee. Speaking to Medscape Medical News before the meeting, he said that the field is rapidly evolving and that the key message this year is that "personalized medicine is becoming a reality."

Data Protection Hampering Research

Also at the press briefing, medical oncologist Paulo Cassali, MD, Instituto Nazionale Tumori, Milan, Italy, raised the issue of how data protection is hampering research in this field of personalized medicine. At present, strict interpretation of European Union law requires that a patient giving informed consent for a tumor sample to be taken needs to be told exactly what the tissue will be tested for, he explained. But the field is evolving so rapidly, with new biomarkers emerging almost daily, that it is useful from a research point of view to test more widely than this — for several different biomarkers. It is also useful to analyze tissue retrospectively, even years after the tissue was obtained and stored. "So we want it to be a more global consent for donating tissue and agreeing to its use in research," he said.

"In some countries, some clinical trials are not approved, and some biobanks are not being populated with tissue because of these concerns about data protection," Dr. Cassali commented. An example is the Netherlands, where tissue could be banked only with a predefined scientific question, until a change in the law a few years ago that permits tissue to be donated for research, allowing the tissue to be used repeatedly in the future.

The survey was funded by Merck Serono, Germany.

2012 European Society for Medical Oncology (ESMO) Congress. Presented September 30, 2012: Abstract 1382.