by Tom Brokaw
Brill’s investigation turned up one horror story after another along those lines, many much worse, an experience I encountered while producing two hour-long documentaries on healthcare costs in the eighties and nineties. How to change that? I decided that the front lines of medicine, the physicians, have to get deeply involved.
In the spring of 2013, before my MM diagnosis, I received an honorary degree from the Mayo Medical School and gave the commencement address to the hundred graduates, almost equally divided between men and women. I am in awe of the bandwidth—the brain power—it takes to become a physician, the dedication, the imagination and energy, the compassion, and, in the new generation, the greater commitment to a level playing field for the patient population. With all of that in mind, I began with a favorite anecdote from Dick Butkus, the legendary jackhammer-tough Chicago Bears linebacker.
When asked why his college major was physical education he said, “If I was smart enough to be a doctor, I’d be a doctor.” I told the graduates I shared that with Butkus but that I did have some observations about patients and doctors, based on personal and professional experience:
As your commencement speaker I cannot tell you how to read a scan, crack a chest, set a bone, insert a stent, prescribe the right combination of drugs, or any of the other procedures you’re about to take into the world.
What I can talk about is my own empirical observation on the state of healthcare and doctor-patient relationships.
To begin, you’re headed off to your residencies at a time of considerable confusion and uncertainty in the construct of the delivery of and payment for healthcare in America.
That [cost and payment] system in its current form is unsustainable on a national level. It is too opaque, too chaotic, too expensive, too uneven, and too inefficient.
My best guess is that it will be fine-tuned—with more state-by-state flexibility and more private economy variations.
But what will not change is that the delivery of healthcare cannot slow or stop while this is sorted out. We’re attempting to change tires on a semi trailer truck while going eighty miles an hour.
That’s where you come in.
I am persuaded that even with Google most patients enter a doctor’s office or a hospital as if it were a Mayan temple, representing an ancient and mysterious culture with no language in common with the visitor.
Judgment is suspended and the visitor in his or her own mind takes on the character of an anatomical chart, a mute and inanimate object, worried about asking the dumb question or befuddled by the new terms they’re hearing.
That separation from their world and your world is a reality that to one degree or another will affect your short- and long-term future.
As a physician you have special standing with those who are on the outside looking in—and a special understanding because you are on the inside looking out.
To return where I began, a high priority for your profession is to demystify the way medicine presents itself to the world.
As graduates of the Mayo system I am confident they understood that. The clinic is a patient-friendly system with expansive lobbies and sunny solariums as a welcome retreat for patients facing the unknown or a defined condition that has no good outcome.
The real genius is in the management of every patient who comes through the doors. A Saudi prince may get more personalized attention than a Wisconsin schoolteacher, but both will be the central figure in a system where all of the attending physicians and technicians on the case are sharing the same information and constantly communicating with one another about what’s best for the patient. Sounds logical, no?
In too many healthcare facilities and in too many specialized practices the patient is a one-off: advised or treated and then passed along with no connecting communication between the last and next physician. One of the enduring lessons of my cancer experience is that of the need for a personal ombudsman, a physician not directly involved in the treatment but with broad knowledge so he or she can interpret the primary caregiver’s approach. Jennifer did that for me and I would like to see an institutional approach to the need.
We could have retired physicians available at major healthcare systems to assist befuddled patients and their families through the maze. We should take a cue from our most successful American-made enterprise of the past twenty years: Silicon Valley, home of the entrepreneurial whiz kids who gave us first the portable computer and then a galaxy of applications that continue to change how we communicate, buy and sell, do research, entertain and be entertained. The digital world is our Big Bang.
And what’s the driving motivation? Be disruptive. Challenge convention and change it positively.
We need to be disruptive in our approach to the obvious challenges of our time, one of which is healthcare. We have in this country great medical schools, physicians, researchers, healthcare systems, and pharmaceutical companies entangled in an imperfect system. President Obama’s attempt to reform that was ambitious and in some states, notably Kentucky, it is working. However, from the beginning it was too complicated and too wide-ranging, leading to a series of exemptions and variations to satisfy states that wanted to tailor it for their unique needs and political realities.
The political perception was not helped when the president assured everyone they could keep the doctor they have, a promise he was forced to retract. While the Democrats fumbled the construct of the plan, Republicans were equally derelict in not presenting a comprehensive bill of their own. They chose to simply make it a political football, punting at every opportunity.
My own impression from the beginning was that it would have been more efficient to roll out reform in stages, beginning with a plan for just the uninsured and then forming medical, corporate, and political coalitions to resolve the remaining issues.
—
As 2013 came to a close I was in a cancer treatment rhythm. My life was ritualistic: a chemotherapy capsule and other pills in the morning, followed by physical therapy designed to arrest the deterioration of muscle tone and balance. At mealtime I had a slightly more robust appetite, but my calorie intake was probably two-thirds of what it had been prediagnosis.
That was not an ominous development until I slid past 175 pounds and couldn’t turn the scale back up. So I forced more of the liquid nutritional supplements into my system and arrested the slide.
Weight loss was another reminder that other forces were controlling my body, and while I understood intellectually what was going on, I resented it.
When do I get some control back? I wondered.
Winter
By early December 2013 my new normal was due for another reality check. Were the drugs, especially Revlimid, working? To know, I had to undergo further testing, including a bone marrow extraction—a series of needle injections into my right pelvic area. It was neither a benign experience nor intolerable, if you can tolerate a sharp jab of pain followed by an electrical charge through the nervous system of the lower extremities.
The other two parts were a check of the blood chemistry and a PET scan, that nuclear medicine pinball machine, locating the bone deterioration. The results would help determine the next step. Specifically, would a stem cell transplant be necessary? There are clinical trials under way on the question of whether transplants can be set aside in favor of continuing just a drug assault on the myeloma. Some specialists are choosing that option before the trials are finished. Others are awaiting the outcome before going the drug-only route.
As I waited for the results of my tests and the choice that Dr. Landau would make, Nelson Mandela died in South Africa. The loss of this great man triggered so many memories. We first met in 1990, when he was released from prison after more than a quarter-century behind bars. Early that year, thanks to a tip from a friend in the South African government, I managed to get to Johannesburg before it was announced by the apartheid regime that Mandela would be freed.
For twenty-seven years he had been seen by very few in t
he outside world. Journalists relied on old, grainy black-and-white photographs of him as a young rebel when reporting on the case. Then, suddenly, there he was speaking to a joyous crowd in the square at the Cape Town city hall. He stepped to the balcony, a tall, gray-haired, handsome man carrying himself with the confidence of a leader who’d had a long, long time to prepare for this moment.
Two days later we sat in his garden in Soweto, the sprawling black neighborhood on the edge of Johannesburg, where he talked easily about his hopes for the future without a trace of bitterness over what he’d been through. Over the years I saw him several times in America, and I went back to South Africa in June 2013 to report on the end of his life, concentrating on the eighteen years he had spent imprisoned on Robben Island, the stony outcrop just off Cape Town. For all its deprivations, Robben Island helped shape the Nelson Mandela we came to know later.
It is where he learned the language of the whites from a prison guard who became his lifelong friend. In that confined place of no physical comfort he spent hours with his fellow political prisoners contemplating the South Africa he’d like to lead when released, as he was confident he would be one day.
Prison was, as it has been for so many inmates of conscience, a harsh confinement that led him to endure the physical pain by concentrating on that which cannot be shackled: the mind and the liberating force of powerful ideas aligned with human rights. When word of his death came I shared those early Mandela stories on NBC and thought about the lessons for me in what is a much lesser personal trial.
His life before the triumph that defined his legacy was a reminder of the importance of patience, courage, and the absence of self-pity. These were the same qualities that American prisoners recalled to me as the reason they survived the brutal treatment and deprivations of Japanese prisoner-of-war camps during World War II.
Louis Zamperini, the subject of Laura Hillenbrand’s phenomenal bestseller Unbroken, looked surprised when I asked if he had ever been tempted to give up while he was being tortured.
“Never,” he said, adding that it was this attitude that had kept him alive.
When I met Mandela at his home in Soweto two days after his release, he might as well have been a successful businessman just returning from a trip to Zurich. The last fourteen months of his imprisonment had been spent in a South African version of a white-collar crime camp. In any case, he bore no obvious emotional scars of Robben Island or two intervening prisons. He joked with the camera crew, signed his autobiography for the children of an NBC producer, and in his answers talked of the future, not of the cruelties of the past.
A photo of me interviewing Mandela in the garden at that time is a personal treasure, all the more so now.
—
As the end of 2013 approached I began to read more closely accounts of the people who had died during the year, not because I was ready to check out myself but because in many instances they called up memorable relationships, occasions, or the work they left behind.
It was another reminder of the good life I’ve had, spending time with just a few of those who passed on: the writers Elmore Leonard and Tom Clancy; astronaut Scott Carpenter; Gene Patterson, a legendary newspaper editor; White House correspondent Helen Thomas; three Hall of Fame political journalists: Jack Germond, Anthony Lewis, and Richard Ben Cramer; Al Neuharth, fellow South Dakotan and founder of USA Today; former British prime minister Margaret Thatcher; pro football’s Deacon Jones; Lindy Boggs, Louisiana congresswoman and mother of our friend Cokie Roberts; former Pennsylvania governor Bill Scranton, one of the last of the moderate northeastern Republicans; jazz guitarist Jim Hall.
—
By December it had been four months since my diagnosis and I was optimistic the treatment was going well but also apprehensive. What if my confidence was just a hangover from a life in which, despite mistakes and my imperfections, I somehow almost always emerged upright?
I’d awake nights and for just a beat forget that I had cancer. Then, the realization, the frustration, the small tick of fear that this would not end well. It was a faint fear, but I knew of too many cancer cases that seemed to be on the mend only to turn with a vengeance on the patient.
Multiple myeloma may be a small-population cancer, representing only 1 percent of the cancers recorded and affecting twenty thousand people a year, but Meredith and I keep encountering others who have the disease or who are related to myeloma patients.
One is Frank Lalli, a Sunday softball–playing buddy and former editor of Money magazine for Time Inc. In December 2012, eight months before my diagnosis, I was surprised to read in The New York Times that he had multiple myeloma. We hadn’t seen each other in a while and apparently he was determined to keep his condition a private affair.
However, as an enterprising journalist who specializes in financial matters, he went public in an opinion piece that meticulously tracked his frustrations in trying to determine who would provide Revlimid when Time Warner removed the thousand-dollar cap on prescription costs for active and retired personnel alike. That meant the company would not automatically assume costs once a senior employee had spent a thousand dollars on prescriptions.
Frank quickly found himself in a wilderness of conflicting guidance and wide spreads in the cost of Revlimid, his primary chemo and maintenance drug. In one month he made seventy phone calls to sixteen organizations, including his employer, Time Warner, and Medicare. Revlimid, which has been so effective in treating myeloma, was very expensive at retail—$132,000 a year, or roughly $524 a pill.
He was stunned when he discovered that Time Warner had been spending $8,000 a month for his Revlimid. Now Time Warner was saying, in effect, “We’ve changed the rules. No more cap on your share of the cost. You figure it out.” He was on the phone constantly to Time’s health benefits officers, Medicare reps, the drug company, and the insurer. They quoted prices ranging from $20 a month to $17,000 a year.
His life was quickly divided between managing his health and managing his disputatious relationship with Time Warner on promises made and promises broken to longtime senior employees. Finally, Time Warner’s insurance carrier realized that Frank was part of a subgroup that caps any specialty drug at $60 a month. He received a commitment in writing and so far it is holding up.
When I returned to New York from Minnesota I called Frank to share news of our common condition and he immediately became my pathfinder, one of those heroic World War II airborne troops who jumped in early on D-Day to guide other paratroopers to landing sites and German targets. He shared his Dana-Farber physician, Dr. Ken Anderson, as a second-opinion resource and described the various effects of drugs during the initial rounds of treatment, the criteria for choosing between stem cell transplant and drugs alone, and, most encouraging, his physical regimen, which he hoped would have him back in the batter’s cage by April.
Frank was also the first but not the last to tip me to a singular advocate for multiple myeloma patients. Kathy Giusti was diagnosed with MM in 1998 while an executive at a pharmaceutical company. She did have a successful stem cell transplant but that was before the welcome arrival of Revlimid and so her prognosis was not encouraging.
Kathy and her twin sister, Karen Andrews, a corporate attorney, decided a more businesslike approach was needed to slow this tenacious disease, so they organized MMRF, the Multiple Myeloma Research Foundation, as a central gathering place for patients, physicians, and researchers. Until Kathy and Karen got involved, a great deal of the multiple myeloma treatment and research around the world was the work of individual teams that were failing to communicate with others working on the disease. Alas, that is not an uncommon condition even in this wired world.
MMRF became, in a way, the home office of what might be called MM Inc.: that is, a foundation with a corporate attitude about making change happen quickly through innovation and an uncompromising bottom line. Is a particular treatment working? No? Move on.
As word of my condition began to seep out, I discove
red that Kathy and I shared a number of friends, all uniformly enthusiastic about her personality and work. One meeting with her and I was also a member of the Kathy Giusti admiration society. She was tuned in to all the latest developments in part because her foundation has become a central repository for work done on myeloma around the world. She has been so successful in establishing the foundation and making it a go-to resource for MM research and treatment around the world that her alma mater, Harvard Business School, has published a case study on the foundation’s history and continuing influence.
—
My mobility and balance were steadily improving, thanks to the approach of Sloan’s physical therapists. When I told them I wanted to get back to shooting and fishing they created a series of exercises to train the right muscles. We had an approximation of an uneven field in the house gym, a series of spongy pads and stools to step over or onto, gates to slide through sideways, and even a steel tube as a mock shotgun. The therapists would call out “Shoot!” as I made my way through the obstacle course, and I would turn and knock an imaginary bob-white quail from the sky.
I seemed to do well, which helped my self-esteem, until one day when I left the gym and walked up Lexington Avenue and my hearing aid battery began to fail. It was cold and windy so I tucked up against a falafel stand and tried to change the battery with numb fingers. Fumbling, I laughed aloud at myself. “Here you are, Brokaw, sick with cancer, trying to learn to walk again, bedeviled by a hearing aid battery, and not even the falafel vendor cares. You’re really pathetic.”
The hearing aid is another reminder of advancing age. Hearing loss runs in the family and it is also an occupational hazard of longtime broadcasters who have had all manner of high-decibel sounds pumped into their eardrums while on the air. When Mark Leibovich wrote his withering bestseller, This Town, about the cultural customs and tribes of Washington, D.C., he was generous, assigning me senior status and even some wisdom. To underscore the senior status he noted I wore a hearing aid.