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Leukemia Researcher Hagop Kantarjian's New Grassroots Effort Against High Cancer Drug Costs

Butcher, Lola

doi: 10.1097/01.COT.0000461858.82965.b3
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Hagop M. Kantarjian, MD, Professor and Chair of the Department of Leukemia at the University of Texas MD Anderson Cancer Center, is preparing to launch a grassroots campaign to gather patients' stories about how they are affected by high cancer drug prices.

“If we can get a million signatures online, either through Twitter or Facebook, about patients who say ‘I protest high cancer drug prices because...’ and tell their stories, this will become a major story that will put pressure on drug companies,” he said. “And it will put pressure on our elected representatives to try to reduce high cancer drug prices or to make cancer drugs affordable to all patients.”

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The social media campaign is the next phase of Kantarjian's work to protest cancer drug prices, which have spiked in the past decade. As he noted in a 2013 article coauthored with Donald W. Light, PhD, 12 of the 13 new drugs approved for cancer treatment the year before were priced at more than $100,000 per year of therapy (Cancer 2013;119:3900-3902).

Kantarjian's first public foray on the topic came earlier in 2013, when he recruited nearly 120 chronic myeloid leukemia (CML) experts to coauthor an article in Blood protesting the high cost of tyrosine kinase inhibitors (OT 5/25/13 issue).

Since then, he has published articles tackling various angles of the drug cost issue in Cancer, the Journal of Clinical Oncology, the Journal of Oncology Practice, and he has another article in press in the Mayo Clinic Proceedings. Meanwhile, he has also spoken on the topic at meetings including a panel at the most recent American Society of Hematology Annual Meeting.

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Kantarjian is best known for developing cancer treatments, including chemotherapy combinations and the single-agent clofarabine for acute lymphocytic leukemia (ALL), the hypomethylating agent decitabine for myelodysplastic syndromes, liposomal vincristine for ALL, and ruxolitinib for myelofibrosis.

He serves on the board of directors of the American Society of Clinical Oncology, which recently started incorporating the concept of value into its clinical practice guidelines to help oncologists as they make treatment decisions.

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What prompted you to lead a public protest against high cancer drug prices?

“We are creating a differential society, almost a Darwinian approach to medicine. If you are rich, you can pay for the drugs and you live. If you are poor, then you cannot pay for the drugs and you die.

“As a physician, I am bound by the Hippocratic Oath that says I must protect patients from harm and injustice. High cancer drug prices being not affordable to patients are causing them harm, and they are causing personal and social differential injustice. This is why I decided to speak up against high cancer drug prices.”

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You recruited many CML experts to sign on as coauthors to the Blood article that protested the high cost of tyrosine kinase inhibitors. What prompted that idea?

“It started in informal conversations with my colleagues because we were preparing for the new guidelines for tyrosine kinase inhibitors in CML and I said, ‘Look, the price is becoming an important issue.’ There was a lot of reluctance. Some oncologists said, ‘Oh, you cannot bite the hand that is feeding you.’ The reality is, in the current model of cancer research, many cancer researchers have become essentially glorified employees of the drug companies, and they are fearful of the potential negative effects if they speak up against high cancer drug prices.

“I was able to connect with many CML experts across the world, and I decided that I would have at least two experts from each country to sign on to this document. There were a lot of negotiations and agreements to come up with this version of the first collective discussion on high cancer drug prices. At the end of the day, many colleagues withdrew their authorship from the paper because they were concerned about their good relationships with the drug companies. When you look at the authorship, there are no authors from Germany or Sweden.”

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Did you experience any repercussions from publishing that article?

“The reality is I, as a senior investigator, cannot be affected much by such moves, but I heard of other investigators from Europe who have been subsequently excluded from meetings that are sponsored by particular pharmaceutical companies because they signed on to this paper.”

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What was the reception to that initial article protesting drug prices?

“I saw two groups of responses: The first one is the majority of people, including oncologists, specialists, and patients, who are overwhelmingly in support of this. I have received hundreds of e-mails from patients, not related to this particular article, but to the subsequent editorials that were written, stating that they are harmed by high cancer drug prices, that they have a lot of anxieties related to that, and commending these editorials.

“There is a minority of people who are essentially pharmaceutical company spokespersons or lobbyists who continue to argue that high cancer drug prices are essential for the model to continue to work and for innovation to be perpetuated.”

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What can an individual oncologist do to advocate against high drug prices?

“I do not think individual cancer specialists like myself can affect the changes that need to happen. This work has to come from bodies that have the resources and that have a track record in previous legislation. It took cancer organizations representing oncologists and patients a while to decide to step into this discussion; I think they were not sure where this was going and they were worried about potential negative actions from drug companies.

“But we have to be careful not to let the train pass us by. If you think historically, for example, the American Medical Association has taken actions that favored physicians' interests over patients' interests, and that's why they have lost quite a bit of ground.

“If you look at the harmful effects of tobacco, the American Cancer Society took a strong and bold movement against the tobacco industry when other organizations did not want to get into the discussion. By taking the lead, this made the American Cancer Society shine as an independent organization that protected the patients.

“I think ASCO has stepped into this discussion at the appropriate time. For a cancer society like ASCO to say ‘We looked at all the aspects, including the potential harm and other issues related to high drug prices, and we decided to take this into our organizational mission and to start discussing pathways that incorporate drug value’ will give ASCO recognition as an organization that puts patients first.

“I think it's very important for other organizations that have not yet stepped into the discussion to do so. These include the American Society of Hematology, the Leukemia & Lymphoma Society, and the American Cancer Society. These societies have to take a position on the high cancer drug prices and to decide to advocate for affordable drug prices, because otherwise there will be harm to the patients.”

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Why do you think a social media campaign can be effective?

“There is already a model. There have been 28,000 online signatures by patients in England to protest the high price of a particular cancer drug for breast cancer. [In trials, ado-trastuzumab emtansine extended the lives of women with advanced HER2-positive breast cancer by almost six months compared with the treatment currently approved for use in the National Health System. It costs nearly $140,000 per patient, and the National Institute for Care and Excellence deemed it not to be cost-effective.] So this is the kind of protest and grassroots movements which, on a larger scale in the United States, could work very effectively.

“What can we do as individuals without deep pockets? We can use the new social media as the shaming strategy to help pharmaceutical companies that have deviated from their moral obligation and social corporate responsibilities to change their course and current financial strategies. We can ask our elected representatives to stop passing legislation that harms patients to the benefit of interest groups.

“I am trying to find people who can help me with this, because that will be my first endeavor along this line. It has to be a patient-driven movement to be successful. We have to convince patients with cancer who are suffering from high cancer drug prices to sign in on those sites and to tell their story.”

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Why Drug Prices Are High

Elaborating on the specifics of why drug prices are so high, Kantarjian noted that American cancer patients and their insurers, including the Medicare program, pay 50 to 100 percent more for drugs than patients in other countries. The main reason: Pharmaceutical-friendly laws have effectively impaled the free-market forces that would keep prices lower. He coauthored a Perspective article last year making that case in the Journal of Oncology Practice (2014;10:e208-e211).

“There are several factors that are preventing the market forces from acting properly,” he told OT. “The first one is the prohibition of Medicare from negotiating drug prices.”

The Medicare Modernization Act of 2003 established Medicare Part D, which requires the Medicare program to pay for outpatient drugs regardless of cost. The law stipulates that the Medicare program, the single largest payer in the nation, cannot negotiate drug prices.

Secondly, the Patient-Centered Outcomes Research Institute (PCORI), a federal agency that conducts comparative effectiveness research, is prohibited from including drug prices in its evaluation. Thus, PCORI can determine that one treatment is more effective than another, but it cannot say whether one is more cost-effective than its competitor.

Further, regulations prohibit patients from importing drugs for their personal use. “So you can have the same drug—imatinib—which is sold in the United States at $92,000, in Mexico at $28,000, and in Canada at $46,000, but yet the Food & Drug Administration has rules and regulations that prevent importation,” Kantarjian said. “So that does not put pressure on the system in the United States to reduce the drug prices.”

Moreover, pharmaceutical companies can legally discourage the introduction of generic versions of their products through strategies like pay-for-delay, in which they pay generic companies not to introduce lower-cost alternatives.

Kantarjian also blames medical societies for their role in supporting high drug prices. Professional societies and other groups that publish treatment guidelines have traditionally not incorporated drug prices into their evaluation of therapeutic options, he said. “That's probably because these organizations have relied heavily on drug industry support.”

And then he casts the spotlight on oncologists: “Finally, there is the issue of us, cancer experts, who have highlighted sometimes minor or modest improvements of new drugs as major breakthroughs,” he said. “Now that the drug prices are prohibitively expensive, we have to put the treatment value within the precise context of its benefit versus cost to the patients, including potential financial toxicities.”

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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