From The ASCO Meeting In Chicago: A Focus On Cost, Value, And Financial Toxicity Of Cancer Care

In the following post, Dr. Leonard Lichtenfeld, Deputy Chief Medical Officer for the American Cancer Society, shares his thoughts on the discussion at the 2014 American Society of Clinical Oncology (ASCO) annual meeting regarding the cost and value of cancer care and treatment and mentions an article recently published in Clinical Cancer Research that he co-authored with other members of the Turning the Tide Against Cancer initiative.

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At the annual meeting of the American Society of Clinical Oncology (ASCO) here in Chicago, something vitally important is happening: there is an increasing recognition of something no one really wanted to talk about in polite company until now. It is the fact that the costs of many of the new treatments being developed are extraordinary.

The headlines about cost and value of cancer care greeted me when I walked into the McCormick Center in Chicago for the opening sessions of the meeting. This is the leading cancer meeting in the world, and what happens here makes news worldwide, significantly impacting the lives of patients with cancer wherever they may be.

Now there is an increasing recognition of the elephant in the room: the costs of these new treatments are extraordinary. No matter how one chooses to slice and dice the arguments, these drugs are expensive with costs per month of $8000 and upwards getting a lot of attention and increasing concerns, especially at this meeting.

For years, it was whispered in hallways, muttered about with reporters, but now it’s out in the open. The headlines say it, the lecturers say it, the attendees are talking about it. There is an increasing awareness surrounding the value, cost and toxicities–both medical and financial-of cancer treatment. Even as I write this I am sitting in a session devoted to the topic of how we make the choices so necessary for the welfare of our patients and how we should guide those choices.

Some say the costs of this brave new world of cancer care are justified by the advances they bring to the clinic and the lives of patients. The cost of the drug should reflect the value they provide to society says one company. Others say the costs are justified to allow continued research to advance new drugs. But increasingly, another voice is being heard: one that says the costs are unconscionable and not sustainable. Patients are going bankrupt and some of the drugs are quite toxic or don’t bring sufficient value to the patient (such as meaningfully extending life, or reducing side effects).

This argument and the facts behind it are not going to go away. And they shouldn’t. There are too many forces at work here to suggest that this discussion be tabled. Right now, camps are developing on either end of the spectrum, with many if not most cancer professionals are in a large undecided middle. This war of words includes pharmaceutical company press releases promoting drug development, lectures describing how organizations are trying to develop ways to measure the true value of particular treatments-not just the cost, but what the drug really brings to the table, how many side effects does it have, and what is its “financial toxicity” (the lecturer’s words, not mine) of the medication.

And as this debate rages, I can assure you it’s only the beginning. Listen to the experts and you hear that we are moving forward rapidly to develop new equipment to more rapidly analyze the cancer genome. Another expert exhorts us that we only have drugs to address 5% of the genetic abnormalities we have identified that make a cancer cell a cancer cell. We are looking at a future where literally thousands of drugs may potentially be available to treat the various genetic abnormalities we find in any one person’s cancer (each cancer has a number of these changes, and then with treatment the cell is smart enough to develop a “workaround” which would require a different drug).

One expert made the very appropriate comment that this level of individualization means we are moving toward a day when “every cancer is a rare cancer.” Imagine cancer cells being like fingerprints: each one an individual, except that unlike fingerprints, cancer cells can change their stripes. And we need to meet each of those changes wherever those cells reside in the body.

A couple of months ago I was privileged to be a coauthor on an article published in Clinical Cancer Research talking about these issues. The article was written by members of the Turning The Tide Against Cancer initiative, and described what we have to do to change the system. Refocusing on the entire ecosystem of research, translation of drugs from lab to bedside, clinical trials, clinical practice and how we care for patients was the topic, and all of those have to be addressed. It will be an immense effort that will require intense focus and commitment from many participants to reform what we do and how we do it and then make it work for our patients, wherever they may be. Ultimately, patients must be our focus and always be the center of our attention. Whatever we do must be through the lens of the patient and their families.

What bothers me about all of this? While it’s great this issue is finally getting some attention, I don’t yet see the passion I would expect to see given the serious barriers standing between us and our promised future. We have spent decades getting to this point. We need to get the new effective treatments to patients as quickly as possible, wherever that patient may be. We need new trial systems to evaluate drugs, and perhaps rethink how we study drugs to learn as much as we can from each patient.

And then we need to figure out how to pay for all of this, supporting our research enterprise, pay for the care, and afford the new drugs. Many people, organizations, and corporations have to rethink how they do business. Society must make this process work.

Here we sit, but is it on the edge of a precipice or the edge of an opportunity? Who will take the lead? Who will truly define value? Who will afford the costs?

So many questions, and hopefully some answers are coming. We need a new paradigm, we need a better future. Business as usual is not going to get us where we need to be. If we want to make this cancer’s last century we had best take hold of the opportunity and make it happen. We may not get another chance if we don’t act now, and make our future and our vision our reality.

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A version of this blog originally appeared in Dr. Len’s Cancer Blog at the American Cancer Society.

The Personalized Medicine Revolution Will Require Revolutionary Changes In How We Care For Cancer Patients

In the following post, Dr. Leonard Lichtenfeld, Deputy Chief Medical Officer for the American Cancer Society, shares his thoughts on how to improve the cancer patient care delivery process and reflects on conversations from a roundtable held by the Turning the Tide Against Cancer initiative.

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I recently attended a meeting in Washington that got me to thinking about the fact that as we revolutionize cancer research and treatment, we are also going to have to revolutionize cancer care. And that may prove to be an even more daunting task than finding new treatments for the disease itself.

The meeting was sponsored by a collaboration called “Turning The Tide Against Cancer“. The organizers brought together experts from a variety of disciplines ranging from insurance companies and economists to advocacy groups and highly regarded cancer specialists to discuss policy solutions to support innovation in cancer research and care. Walking in, I anticipated this was going to be another one of those sessions where we talked about funding for research, bringing research into clinical trials, and having patients get access to new drugs. But I was wrong. The discussions quickly steered into a different direction: what do we need to do to make the cancer care system work for patients?

Of course there were the continuing themes of “big data” and the impact of genomics on drug development and patient care, but a surprising amount of the discussion centered around new payment models, quality of care, and fundamental redesign of medical care to become more patient centric. And although we talked a lot about data gathering and analysis, what stuck with me was the redesign piece. I thought the discussion around redesign would focus on personalized medicine, but we spent a lot of time on changing the fundamental structure of cancer care and payment.

How are those two linked? Did we miss our focus?

The answer? If we don’t change the way the system is working, we won’t realize the promise of personalized medicine. Seems pretty simple and straight forward until you start thinking about the implications.

Our science is moving forward at a rapid pace, in significant ways. We are learning about the human/cancer genome, we have many new drugs in the pipeline that are targeted to the abnormal genetic signatures of cancer cells, we have research reports on a regular basis about a new finding that may predict who is at higher risk of developing certain cancers, or new tests to predict whether someone has an aggressive or indolent cancer. But if we don’t rethink the nuts and bolts of delivering the care, we won’t be able to get these remarkable tools and discoveries into the hands of patients and doctors. That in turn means we won’t be able to offer patients the benefits of the phenomenal advances we have made in cancer research and drug development. Heck, we won’t even have the tools to help develop the drugs or learn who the patients are who may benefit from the drugs or how patients respond to the drugs.

All of this means we have to figure out how transform the system. We need to be able to capture real data from real people. We need to have computer systems that talk to one another. We need to have a payment system that rewards quality-based and innovative patient care.

The list goes on, but you get the point. Being “patient centered”–which is a bit of a buzzword these days–is a call to action. The problem is that the barriers to change are substantial, and many more people and institutions pay lip service to the concept of patient centered cancer care than work to make their care truly patient centric.

Make no mistake: this is a gargantuan task. There are formidable obstacles to overcome which will favor keeping the status quo in place. Progress will be slow and difficult, but we have to keep remembering that we really haven’t tackled the issue of assuring every cancer patient and their loved ones that they got the right treatment for their disease at the appropriate cost and at the appropriate time. Fragmentation, duplication, and lack of information and access are no longer acceptable.

So it’s no longer just about the science and the research, as important as they may be. It’s not just surgery, chemotherapy, and radiation therapy. It’s about the care delivery process and the quality of that care. Reconstructing from the ground up. Thinking about new ways to help patients. It’s about nutrition, psychological and spiritual support, and financial guidance. It’s about making certain that people who live in rural areas can get care that is up to date and accessible through care collaborations designed to serve their needs and their expectations.

Is it too much to ask that patients, their families, and caregivers have genuine assurance that they are getting the best care available? Is it too much to ask that systems be in place to assure quality care? Is it too much to ask that we have computers that actually talk to each other? Is it too much to ask that in the most difficult moment of one’s life, they have an assurance that what was done for them was appropriate?

Don’t expect easy or quick answers to this situation. It took us decades of fundamental research to get us to the place we are today with the human genome. It is probably going to take a similar amount of time to change cancer practice. And I suspect changing practice is going to be even tougher to figure out than the gene thing.

But if we don’t do it, the power of what we will have to offer patients simply won’t be there for everyone. And that is something none of us should accept.

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A version of this blog originally appeared in Dr. Len’s Cancer Blog at the American Cancer Society.