Cancer has many stories. It almost always does.
For Mike Beck, his story started two years ago when he was mugged in Washington, D.C., knocked unconscious near his apartment after arriving on a late-night flight. When blood appeared in his urine shortly after that, he went to the doctor, who found the blood was a symptom of something much bigger than the assault. That’s when Mike found out he had bladder cancer. From there he found out that his bladder cancer was particularly aggressive, and from there he spent nearly 20 hours in surgery repairing the damage that a mugging accidentally uncovered. Most of his cancer is gone now.
My father’s story was completely different. His cancer was uncovered after the doctor checked his prostate after I complained about how many pit stops we made on a drive back from watching his brother — my uncle — die of cancer. My father spent most of four years fighting his cancer. He lost his fight.
It’s easy to see why cancer has been such an enigma. Dubbed the “Emperor of All Maladies” by author Siddhartha Mukherjee, nearly every person has known another with cancer — 1 in 23 Americans either have or have had cancer — but every case seems to be completely different. A quarter of all deaths in the U.S. are caused by cancer now, second only to heart disease, yet cancer is never the same, even though there will be more than 1.5 million new cases this year.
And treatments for cancer vary wildly. It’s hard to find consensus among doctors, and the cost is staggering. In 2009, the National Cancer Institute estimated that the cost of cancer in America was more than $210 billion, or 5.6 percent of the U.S. budget — three times what the federal government spent on education for the entire country.
Only in the last few decades, prompted by costly end-of-life care and awareness campaigns, has cancer treatment begun to change. Now instead of best guesses and costly screenings for everything, doctors are implementing large-scale reforms meant to streamline treatment and reduce the impact that “routine” cancers have on the bottom line to spend more time and money on “rare” cancers that can drain budgets and resources.
The University of Colorado Cancer Center knows the challenges, the costs, the risks and potential rewards well. It is among the few centers nationwide massively overhauling the cancer care system through a variety of reforms, including shared information.
They’re looking to change the story.
Dr. Tom Purcell talks about cancer the way an accountant talks about tax season.
His conversation is littered with terms like “efficiencies,” “complex adaptive systems,” and “favorable outcomes.” The way Purcell talks about cancer is clinical in the contemporary sense of being detached, emotionless — not the actual sense of being full of precise but hard-to-understand clinical terms.
That’s not to say the medical director for the University of Colorado Cancer Center doesn’t have a heart. He knows both my mother and father died of cancer, and takes time to tell me how he feels.
“I understand you have personal experience, I’m sorry to hear about that,” he says. Then he immediately returns to form and launches into a two-minute oration about patient-first metrics and breaking down silos.
Perhaps without the twinge of a Mississippi-born drawl that makes him sound a little like a country doctor, Purcell could be mistaken for someone more preoccupied with numbers than with people. In fact, nothing could be further from the truth. Purcell is among one of the few, but growing, group of physicians attempting to make cancer care more efficient, demystifying cancer and breaking it down into its base processes of diagnosing, staging, treating and maintaining.
Purcell’s mission is critical to the cancer center’s : If the war on cancer is to be won, it will be won patient by patient, one battle at a time
“There is a better way, there’s a way we can become more efficient, but it’s going to take a better understanding of our current state and understanding where we’re trying to get to,” he says, from his office overlooking the middle of the campus. “We have a very solid vision of how we think we could operate the cancer center more efficiently. Then it’s about process improvement projects, to get us to that point.”
Purcell approach to medicine isn’t traditional, and neither is the path he followed into the profession.
The former football player at Millsaps College in Jackson, Miss., is solid for a man nearly in his 50s. His battered fingers indicate that his work is down outside the surgical suite. Purcell finished his undergraduate degree and went on to get an MBA from the University of Chicago, a school renowned for shrewd business practices, not bedside manners. His first experience in corporate culture, not clinical medicine, clearly informs his thinking about how to deliver care to cancer patients
“How do we increase quality? Or how do we reduce cost? Value equals quality over cost,” he says, rattling off the formula as if he were reading it from a motivational poster on the wall of his small office
The way he’s approaching medicine may sound like common sense in our world that’s familiar with TED talks: Breaking down silos, tipping point, involving stakeholders and other tropes of marketing speech are invading our everyday speech. But when Purcell talks about such concepts, he’s talking about cancer in a way that cuts to the bone: Everybody knows cancer, and everybody knows that treating cancer could be better. He wants to change that.
“Well, our vision for the cancer center is to have the best outcomes, the best patient experience and the best place to work,” he starts. “How do we get the best outcomes? When patients are diagnosed with cancer we are organized in teams and those teams focus on that particular patient. We have groups — it’s not just doctors, it’s trainers, physical therapists, financial counseling, psychosocial — that all come together for the patient.”
That leads into his next-favorite topic of conversation: complex adaptive systems.
What he means is that cancer is far from simple. There are hundreds of types of cancer in differing stages of invasion, spread among hundreds of different locations in the body in millions of different people. That creates myriad different types of cancer, and an exponentially higher number of available treatments.
Purcell’s bottom-line summary of the situation:
“When you have complex, adaptive systems paired with human psychology and silos, you get a wasteful system.”
That means that those millions of different types of cancers, paired with thousands of doctors with hundreds individual ideas about patient care who don’t communicate well with others, treatment options can seem infinite — and infinitely ineffective.
That’s his biggest challenge: creating systems within individualized treatment plans.
As examples of how to create efficient systems, Purcell turns quickly to “Lean” and “Six Sigma” concepts. Lean is a manufacturing concept, and Six Sigma was developed by electronics maker Motorola in the 1980s. In those concepts, efficiency results from reliable execution and repetition .
These staples of the business world were, up until a decade ago, were shunned in the field of medicine because the human body was too complex to standardize. Cancer cells can’t be compared to cell phones, or so the conventional wisdom had it.
Purcell points to multi-disciplinary teams as one business concept that most definitely transfers to the world of cancer treatment. A group of physicians, counselors, nurses, and other professionals involved in a treatment plan talking about specific patients within their purview of expertise, discussing and developing a plan that can be put into action rapidly and reliably.
Standardization techniques can help treat cancer, Purcell says. There would be dire consequences if they couldn’t make care more accessible and more affordable.
According to the National Cancer Institute, more than 1.6 million new cases of cancer were diagnosed last year. In 2010, more than 13 million Americans were living with cancer. Nearly 600,000 people died of cancer 2013.
In 2009, the most recent year data was available, the National Cancer Institute estimated the direct medical cost of all cancers to be around $87 billion. The total cost that year, including indirect costs, was around $216 billion. By comparison, the total indirect and direct cost of heart disease in 2010 — the most prolific killer of adults in the U.S., before cancer and lung diseases — was $109 billion. Only when combined with hypertension, stroke and heart failure do heart-related diseases surpass cancer in cost, which kills fewer people.
Purcell says the economics of cancer necessitate a business-like approach, one that stresses a uniform approach to individualized care to make the disease successful — and even profitable — to treat.
Ask him why business concepts took so long to infiltrate medicine:
“Health care is unfortunately behind in a lot of this. We’re going to sink the ship in terms of health care expenditures in this country if we can’t figure out how to do more with less.”
The fight against cancer often fires the first shot at patients’ wallets.
The costs associated with cancer can be stratospheric: Mike Beck, a man with bladder cancer, was initially charged $11,000 for a CT scan that Medicare and supplemental insurance paid all but $168. The National Cancer Institute estimates that the net cost of Beck’s bladder cancer in its first year is nearly $21,000. Continuing care for Beck’s bladder cancer, according to NCI, is around $4,500. End-of-life care for someone with bladder cancer is nearly $80,000.
And Beck is quick to point out that bladder cancer is the third-most diagnosed form of cancer, after breast and prostate.
Despite the expense, Beck says he’s worked hard enough in his life not to be concerned with the cost. Out of pocket, he says he’s spent about $20,000 to fight his cancer, but others aren’t likely in the same reach.
In its 2010 study, NCI estimated that the cost of cancer care in the U.S. in initial phases topped $40 billion. In 2020, that figure is expected to be roughly $47 billion. For continuing care, the costs were $45 billion in 2010, which will skyrocket to more than $60 billion in 2020.
“The costs of cancer care are increasing, and there are changes in the types of care cancer patients are receiving,” said Robin Yabroff, an NCI researcher.
More patients are getting older, and those patients are living with cancer for longer, the study points out, which is why in a few short years the cost of continuing care of cancer will increase by more than 25 percent.
More than 18 million cancer survivors will be living in the U.S. in 2020, estimates project. By that time, that’ll be one out of every 20 people alive in America. That will be less than the number of people living with heart disease, but treating cancer costs 20 percent more than treating heart disease, on average.
It’s hard to find consensus among medical experts on whether cancer costs will increase significantly or only moderately over the next five years or longer; the number of uninsured patients has changed significantly from 2010 to 2014, and the number of available treatments have gone up while some costs have gone down. But nearly across the board, the number of cancer patients is expected to rise, and in some cases dramatically.
The number of people diagnosed with nearly every form of cancer, except cervix and ovarian, is expected to rise between now and 2020 — in some cases by double-digit percentages. Melanoma and esophageal cancers are expected to rise by at least 40 percent according to the NCI, with esophageal being the third-most expensive form of cancer in men to treat initially behind brain and pancreatic cancer. Both brain and pancreatic cancer incident rates are expected to climb 27 percent and 33 percent respectively. (By comparison, the population will grow by roughly 9 percent overall.)
That’s underscored by the idea that the cost of treating cancer has increased dramatically. A price chart provided by Sloan-Kettering shows that in 1965 a chemotherapy drug used to treat non-Hodgkin’s lymphoma cost about $78 a month for patients. Adjusted for inflation, that’s about $580 today. In October 2012, three physicians writing about the spiraling cost of medications wrote that a new cancer drug coming to market on average costs patients $4,500 each month, with the median price of a drug ranging closer to $10,000 per month, in some cases, even more. Of the 12 drugs the U.S. Food and Drug Administration approved for use in 2012, 11 cost more than $100,000 per year.
Treating cancer that way, Dr. Tom Purcell says, may be a losing effort. Throwing drugs at patients probably won’t result in better outcomes, just costlier care.
Purcell says that the University of Colorado Cancer Center where he is medical director is looking to increase the value of care instead of the cost.
“Value equals quality over cost,” he says repeatedly.
That means reducing the number of tests, duplicate work, unnecessary visits and treatments that add to the bottom line without necessarily increasing the likelihood of a positive outcome or meaningfully extending a patient’s life.
Understanding the quality of care is becoming more important than simply providing quantity of care.
“Patients don’t want to waste time here,” Purcell says. “Waiting is a huge area for us to continue to improve. And wasting time here is wasting time getting treatments going.”
It’s hard to find a consensus among researchers and experts that early detection significantly reduces overall cost (including the costs of screening programs, which vary with the type of cancer) but most agree that the cost to the patient is significantly less. In prostate cancer, the cost of maintenance drugs is significantly less than the cost of surgery, $4,500 per year compared to $25,000 for surgery on average.
Beck said his cancer wasn’t a significant problem for him financially, but he understands he’s one of the very few.
“If I didn’t have Medicare or supplemental insurance, I’m sure it would have been a problem,” he said.
After he was diagnosed with cancer, Beck said he started reviewing the family finances with his wife in case he didn’t fare well in his fight with the disease He refinanced his home, sold stocks to free up cash and made sure to cover most of his outstanding debts. The $20,000 he’s spent so far isn’t much because “it’s deductible,” he says.
But he knows that others aren’t in the same situation.
“It’s not about the money … but it puts things on hold,” he says. “I haven’t struggled like I know some other people have.”
The fight isn’t only in the person, he acknowledges. It’s also in the wallet, too.
White coats in a beige room around folding tables that looks like they were used for yesterday’s bake sale. On the surface, the meeting among these 15 doctors looked hardly remarkable. It could have been a company-catered lunch like any other company-catered lunch to talk about training videos, new benefits or quarterly updates. The topic of this daily meeting, however, was literally life and death.
Tuesdays are reserved pancreas and biliary cancer. Wednesdays are devoted to another form of cancer. Thursdays, Fridays and Mondays too. There will be a meeting like this every day this week, and every day next week, too.
Officially, it’s called the Pancreas and Biliary Cancer Multidisciplinary Clinic at the University of Colorado Cancer Center, but most participants just call it “Multi-D.” Multi-Ds , a seemingly simple concept to those outside the medical field, have taken decades to arrive: a formal collaboration involving everyone involved in caring for individual cancer patients.
At the table were surgeons, oncologists, radiologists, pathologists, radiation oncologists, dietitians and social workers. Last year, the pancreatic Multi-D reviewed around 300 patients’ cases and situations as a group. They’re on pace for more this year and some days the meetings are standing-room only.
It sounds like common sense; team meetings aren’t new. Nearly every grocery or department store will have a multi-department meeting at least once a day. It makes sense for one side of the building to know what the other side is doing, but Dr. Tom Purcell, medical director of the Cancer Center, says meetings like these only started about a decade ago; a pebble in time compared to the landslide of humanity’s historic fight with cancer.
Today was a relatively slow day for this Multi-D team: four patients, two of whom were reviews.
Doctors around the room sawed at baked potatoes that had been in the foil for a little too long and waited for the meeting to begin. When it did, the center and side projection screens came alive with CT scans and tissue samples magnified by a microscope.
Earlier in the day, the same patients were brought into the Cancer Center for screenings and the very same CT scans doctors were looking at over lunch. In fact, the news and decisions made among doctors will be relayed to the patients today, minutes after the meeting is over. This process used to take days, weeks, or sometimes longer.
Time spent waiting for the ominous “appointment” is wasted time, Purcell says. Less time in the waiting room means more time for treatment. More time for treatment means better outcomes. And better outcomes mean better bottom lines. Wasted time is wasted money; with cancer, it is also wasted opportunity at recovery.
Today the surgeons are the main characters in the Multi-D discussion. The first patient is an elderly man who has difficulty moving long distances. Surgeons look at his CT scans, asking an operator to move the images around to see just exactly how cancer has permeated his body. The scans and his pathology results are just hours old.
The conversation about Patient A picks up:
What’s the verdict on operating on someone who’s having a difficult time moving already?
Could be risky, but would he be a candidate for surgery otherwise?
If the window for surgery isn’t open now it won’t be after chemo and radiation.
Good point.
Let’s operate where we can.
Who’s volunteering to do it?
I think you just did.
Cheryl Meguid, assistant professor of surgery at the Cancer Center, ran the Multi-D meeting this particular day. She’s also administrative director of the Pancreas and Biliary Center at the University of Colorado Hospital and says some days the surgeons are the main attraction, other days, maybe not. Treatment options can range from radiation to surgery or chemo, or any combination of all three ,or more. Treatments have a habit of changing at meetings like these.
An Ontario Cancer Care study in 2006 found that treatment plans for patients who were discussed in Multi-D meetings changed 43 percent of the time after the meeting, and another study showed an 11 percent improvement in survival for breast cancer patients who had a multidisciplinary plan. The studies also showed that despite having many doctors with differing opinions in the same room, treatments were more likely to follow accepted guidelines. The national health care system in Australia found standardized treatments that followed accepted guidelines were also more cost-effective in the long run.
Doctors at this Multi-D meeting in Aurora wanted to know if the patients had family who could help care for them after treatment, which, whatever they prescribed, would likely be exhausting and difficult.
They did, although both patients lived outside of the metro area and it wasn’t clear what kind of care they could receive at their home hospitals.
And almost as quickly as it began, the meeting was over. The team had needed only around 40 minutes to discuss all the cases. One patient will likely have surgery, the other won’t, and the two review cases will continue on as normal.
Meguid walked into a nearby elevator to deliver the news to the patients, minutes after it was decided, as the final step in a nearly eight-hour visit to the hospital.
“Oh yeah, these people have had a long day,” she says.
“Four-eighteen-forty-six.”
Mike Beck knows what people are asking for and how to deliver it exactly how they want it, like nurses at the University of Colorado Cancer Center who need to know his birthdate so they can be sure they are talking to the right patient.
“You have to help the people who want to help you,” he says later.
The Lakewood father of seven is just a few weeks removed from his 68th birthday but he doesn’t bother looking back. He’s busy worrying about how he’s spending the next 15 to 20 years he has left.
Before Beck was diagnosed with cancer two years ago, he was a hard-working man. After a career in construction, he took a position with software company Oracle, selling grants-accounting software to the federal government. The feds have 138 branches that were going to use his versatile software, he says, and each branch wanted to customize the software he was selling for their own particular use. He relished the challenge of adapting his job every few months to suit another branch of government, flying back and forth between Denver and Washington, D.C., so frequently that he had an apartment in the Capital’s Chinatown. He could get off the plane, walk to the metro station, and be at his doorstep relatively quickly.
One night after a particularly late flight, Beck was assaulted and robbed on the way to his apartment. He never it coming.
“They hit me right in the face,” he says, pointing to his left cheek. “Came up from behind me.”
After returning back home to Denver, Beck says he noticed blood in his urine and told his wife. She insisted he go to the doctor.
“Being the dutiful wife she is,” he says.
During the examination, doctors discovered Beck had bladder cancer and that it was serious. Although it hadn’t spread far, they thought, it was likely aggressive and worth operating quickly.
“Cancer is a natural process,” he says. “I’m an optimist. I thought either I’ll get it taken care of or I’ll die.”
If he hadn’t been mugged, doctors told him later, he surely would have died. Beck’s cancer would have likely killed him in a year if it hadn’t been removed.
Beck endured 7 hours of surgery to first remove the dome of his bladder, then another 9 hours of surgery to remove his entire bladder after cancer had spread. A complication meant he’d have to have a third surgery to repair a tear in his intestinal lining.
Beck recites a version of this story at least twice in two hours. He’s almost as quick with the story as he is with his birthdate, which he gives three times in the same span. It’s the same kind of routine you can see he relished in his career, although he’s certainly missing the challenge of being a successful commercial software salesman.
“I’m a good salesman,” he beams.
Beck says cancer gave him a new mountain to climb, intellectually. After his surgery, which left him fairly frail, he devoured information about his disease. He called one of his daughters, a post-doctorate studying cancer at the University of Washington, to glean all the information he could about the clinical trail he is participating in. The same voracity he once had for tackling the corporate world doesn’t translate to his world now.
“I’m bored most days,” he says.
Once every three weeks he wakes up at 5 a.m. to travel to Aurora from Lakewood. He takes a while to get up now, and by the time he leaves his house at 7:10 a.m. he’s in traffic long enough to just make it with enough time to park in a nearby lot before his first 8 a.m. appointment.
Today, Beck has appointments stacked one on top of the other, first with pathology, then with dermatology, then to receive his maintenance transfusion. He seldom waits more than 30 minutes in any one waiting room, and during his dermatology appointment Beck has no gaps longer than 5 minutes between weigh-in, consultation and a nurse removing a lesion from his ear to determine if it’s another form of cancer to treat.
Through it all, Beck recites his allergies and current clinical treatment and how it could affect whatever they were interested in. His knowledge of his own treatment is well rehearsed and he knows when to look for messages online about his results.
“I’m very good at understanding complex systems,” he says.
And talking to Beck you get the feeling that he doesn’t view cancer as a life-ending diagnosis. It’s another complex system that he had to learn and repeat — once every three weeks, CT scan every 90 days — until he gets the all clear. Soon, Beck will be more than a year without cancer in his body and he plans to continue to participate in the clinical trial for the foreseeable future, because he has nothing to lose.
He’s already lost his career. Beck says he can’t go back because being away two years may as well be two lifetimes with software. He’ll volunteer with the doctors who helped treat his cancer, he says, or find something else that’s challenging. Right now, he wakes up and plans meals for his wife and children who live at home, but he wants more.
“Cancer forced me to retire. All the ancillary things have been a disruption — not the disease,” he says, walking into his transfusion treatment.
Beck opens his button-down shirt to reveal a plug in his chest. The port was installed for treatments just like this one, and Beck says he purposely wears a button-down shirt because it provides easier access to the port. He has efficiency techniques like that for nearly everything.
Before he gets started with his transfusion, he says, the nurses ask him a handful of questions to ensure that he’s the right person getting the appropriate treatment. Things like name, age, date of birth.
“Four-eighteen-forty-six.”