Here is what Hagop Kantarjian has learned over the past two years of his campaign to lower the prices of cancer drugs:
People would rather avoid disputing you head-on.
Instead, they seek to draw you into a process. And as this process drags on, things remain as they are.
Kantarjian, chair of the Department of Leukemia at MD Anderson Cancer Center, is too savvy and too impatient to get sucked into chasing elusive solutions.
His next course of action is to change the game entirely, by building a political constituency for lowering drug prices.
Kantarjian described the lessons learned and his current game-changing strategy in a conversation with Paul Goldberg, editor and publisher of The Cancer Letter.
Paul Goldberg:You’ve been on this quest for almost two years—politically, what have you learned? How does the system function?
Hagop Kantarjian: I have realized that even when people were willing to engage in discussion, often there was no forward movement.
Each of the interested parties kept repeating their previous arguments. Since there was no movement, we had to do something different.
What we are doing is proposing solutions that will make the market forces work better; and second, we are engaging cancer patients in the same way that AIDS patients successfully engaged in advocating for their medical care. Patients with cancer are hurting and they are being harmed by high cancer drug prices, which make treatments unaffordable and thus unavailable.
We must have a strategy that will reduce the cancer drug prices.
And there are some straightforward solutions, such as allowing the importation of drugs for personal use from Canada; encouraging ASCO and other organizations to develop pathways that incorporate drug prices, what they refer to now as treatment values; and encouraging the development of an FDA approval mechanism that sets a fair price for cancer drugs.
I have proposed these solutions in several editorials, and then began to consider the immense potential if we were to help build a new patient engagement movement. After just a few months, this grassroots concept has begun to blossom. This group of determined patients, with a small bit of assistance, was instrumental in launching a petition on Change.org, just a few months ago in early March.
Together we are gathering online support signatures. The overall goal is to collect enough signatures, so that we can go to our legislators and tell them: Here are our signatures. Our petition represents real cancer patients—we are not just another special interest group. We want to put an end to high cancer drug prices. Most recently, as oncologists, we helped publicize the Change.org petition.
Last week, 118 leading cancer experts wrote an editorial in support of the petition which was published in the Mayo Clinic Proceedings. Our goal was to purposely advance the cause, and help highlight the harm of high cancer drug prices and the critical need to control them. The public heard about us via an overwhelming response by the mainstream media who covered our editorial. But this is just the start of a battle yet to be won on behalf of our patients.
It’s interesting how conflicts are not really resolved; everybody just repeats their points. Disputants don’t meet each other at a halfway point. So you’re at the next point, where you’re actually doing something to move people off dead center. Is that correct?
HK: Correct. So far our original move to highlight the cancer drug prices and to get the drug companies to pay attention to that has not made the companies change their pricing.
In fact, what we saw from 2012 to now is continued increases in high cancer drug prices. In 2012, the cancer drug prices came at close to $100,000 a year. In 2014, all of them came to close to $120,000 a year, and there continues to be an average 10-percent increase in the prices of the old cancer drugs.
To give an example, Gleevec, which was priced at $92,000 a year in 2012, became $132,000 a year in 2014.
So not only are the drug companies not paying attention, but they are continuing along the same path of increasing drug prices in an exorbitant and greedy fashion, and they are harming the patients more and more.
How much support have you received from oncology organizations in this? Do you feel that they are doing what they can?
HK: I think they are doing what they can, in the sense that they continue to be quite dependent on the pharmaceutical companies.
It was very encouraging to see that ASCO, and perhaps ASH, have moved into discussions of pathways that highlight treatment value. But they have shied away from supporting the petition, because they felt that it was not in line with the initiative of ASCO, which is developing pathways that incorporate treatment value—which considers not only the price of the drug, but the respective benefits.
And I think it’s a good movement.
But I think cancer societies are wary of the influence of pharmaceutical companies, and they try to be more modest and moderate in their advocacy.
And obviously you’ve moved in a different direction. What’s next? You have a petition. How would you be seeking to force the companies to change?
HK: I think next—the ball is in the court of the patients.
They have to realize and they have to be hurt enough to create a louder voice in the discussion.
Patients who read this article have a link to the Change.org petition. When we reach our goal in signatures—a target in excess of 100,000, or even one million signatures—then we will deliver our petition to the White House and to Congress. We will ask Washington to join us in supporting cancer patients by implementing the proposals as outlined in our petition.
And when we accomplish the implementation of legislation as discussed in the petition, this will create strong market forces to lower drug prices.
Do you think this is viable as a political strategy?
HK: I think it is. We are in a democracy.
If we have so many hundreds of thousands or millions of Americans with cancer who are hurting, and if these Americans present a strong voice to their legislators through the petition, then our elected representatives have to represent Americans rather than the drug companies—unless our system has turned from a democracy to a ‘pharmaceutocracy.’
This is the first time I heard this term. Have you just coined it?
HK: I coined it in a previous editorial, but I think it will catch on.
In the drug pricing arena, there are players who want to moderate the prices for their own capitalistic reasons—and that’s the payers. Not the government, but private payers. Have they been helpful to you in any way?
HK: I’ve been approached by some payers and we have discussed some potential strategies of mutual benefit, but they have not joined us, because I believe that they are concerned that their engagement will result in a direct war between insurance companies and drug companies.
Do you need an organization of some sort to help you? Do you need to create an organization? How do you do this?
HK: Patient support groups have to step into the arena and take this on the same way that patients with AIDS did.
The problem with patients with cancer, in contrast with patients with AIDS, is that the patients with AIDS were younger, they lived longer, they were savvy about their advocacy, and they were desperate.
Their advocacy had an immediate impact. Within a few years you saw a complete change in the approach to AIDS research and discovery. And over 10 years, we now have over 30 drugs that work with AIDS, and patients live their normal lives.
When you look at the price pattern yearly, patients with AIDS pay anywhere between $10,000 and $18,000 a year per year lived. So why is it that patients with cancer have to pay $120,000-plus per year lived? I think that’s the analogy that we have to be looking at.
Patients with cancer need to start organizing and becoming more vocal, and the petition is one way for them to become more engaged with the discussion.
If I could make an observation, I’ve been covering patient advocacy for 30 years or so, and patient groups have always been very dependent on support from pharma companies. Most patient groups.
HK: I realize this—when the petition came online, there were some patient advocacy groups that contacted me, and they were encouraging the process, but they were very concerned that if they became more visible about it, that the drug companies would cut their support.
What I have realized, is that many of the cancer patient groups are so dependent on the drug companies that they have become an arm; they have become de facto spokespersons for the drug companies.
When we launched the petition, I noticed that there were particular patient advocacy groups that took positions against the petition, and I think that’s because they were enticed by the drug companies that support them to do so.
It’s an uphill battle?
HK: It is. But I know that the patients are strong. They will adopt and support this cause and take this on, realizing that many of them are hurting and dying from the complications from cancer because they simply cannot afford these expensive treatments. But still, there will be some of the current patient advocacy groups who are simple extensions of the drug companies, because they are so dependent on the drug companies’ support.
So basically what has to happen is that the grassroots have to be redefined. It’s not the patient groups that exist. It’s the patient groups that need to be formed.
HK: Yes, there must emerge a true grassroots patient group—an independent leadership group who will speak on behalf of the patients, that does not just repeat what the drug companies try to tell them to say.
