By Barbara Brenner, Former Executive Director
Two years ago at San Antonio, Novartis sponsored a lunch for advocates in the hopes they would help push their drug Zometa (zoledronic acid) to the breast cancer community. At that session, there was lots of excitement among the docs (all funded by Novartis) for this drug not only to treat bones metastasis, but also to reduce the risk of b/c recurrence. The New York Times on December 9, 2010 reported that a new study found that women with early breast cancer who were treated with Zometa did not have fewer recurrences of their cancer than women who were not treated with the drug. These results were commented on at the 2010 San Antonio Breast Cancer Symposium.
Another Lunch with Big Pharma—Novartis Has Its Hands Full
Today’s lunch time entertainment was a presentation by Novartis to promote Zometa. The program was called “Metastatic Breast Cancer: Why are my bones important?” The company rep started by telling us that this drug is doing great things for women, but that there are still lots of people who are untreated but who need to be. She expressed the hope that we would obtain useful information for the patients we talk to, or, at least, to remember to call Novartis if we have questions.
The first speaker was Marcia Strassman, an actress (Welcome Back Kotter) who was diagnosed with bone mets at her initial diagnoses. She is now partnered with Novartis (and has a Facebook page) to offer support and information to other people with breast cancer about the importance of following prescribed treatment. In the case of Zometa, that’s an infusion every 28 days. Marcia was diagnosed after she found what she called a mound, even though she had been getting regular mammograms and had had one 7 months before her diagnosis. Fortunately for her, she had been involved in a benefit to raise money for cancer research for years, and had access to the best doctors. Unfortunately, a scan revealed bone mets, and we she was placed immediately on Arimidex and Zometa. She said she had an allergic reaction to Arimidex, so was switched to Femara. She was very thankful for the drug, which happens also to be made by Novartis. She wanted us to know that most of her activities have not been affected—she’s living her life, and doing her treatments. In fact, she told the group that she was able to get her Zometa when she traveled.
Turned out when she was asked about getting Zometa on the road that Marcia has a health insurance plan that lets her do things that an HMO or an uninsured person can’t do. Great representative for what happens to people with breast cancer, no?
The next two presenters were both doctors—Adam Brufsky and Hope Rugo. They talked about the importance of bone health, and the powerful effect of Zometa. Neither of them disclosed how much Novartis pays them for their work on behalf of the company. Brufsky wanted us to know that great progress has been made in breast cancer, and that the majority of women diagnosed now will be cured of their disease. He promised that in the next few years we’ll see phenomenal progress. (Where have we heard this before?) And he credited the advocates in the room for raising money for research, and urged us to keep doing that. (I can’t be sure, but I’m betting that most of the women in the room work for organizations that don’t raise money for research.)
Hope Rugo framed her presentation interestingly, pointing out that she would talk about what happens in the real world with Zometa, and noting that clinical trails are, as she put it “a little contrived.” She spoke glowingly of the advantages of Zometa, and stressed at some length how rare osteonecrosis of the jaw is as a side effect.
Then it was question time, and that got interesting. Questions could be posed in writing or verbally. Some questions were about treatment issues. I asked about the fact that the company, which makes all these drugs that are addressing cancer like Zometa and Femara (an aromatase inhibitor), also makes the herbicide atrazine, which stimulates aromatase. There was a question about Evista (raloxifene) for breast cancer, which Hope Rugo handled quite well, pointing out that the drug is not a breast cancer drug, but that she prefers it for “prevention.”
Roberta Gelb, an activist who works with several organizations, pointed out to Dr. Brufsky that, despite his urging, none of the advocates in the room would tell the patients they work with to live their lives and leave their breast cancer to their oncologists. After a defensive response from the doctor, the session ended.
The activists with whom I spoke after this lunch were deeply offended by the presentation. They felt patronized and angry. It’s clear that Novartis did not know who was in the room—very well informed, passionate, and smart advocates and activists who need and demand real information, not pablum sugar-coated by a drug company.