My Drug Problem
The Atlantic , March 2009
If I lived in New Zealand, I’d be dead.
That’s the lead my editor wanted me to write, and I have to admit it’s great. Alas (for this column, at least), it’s not exactly true. But neither is it false. And the ways in which it’s partly true matter greatly, not just to me or to New Zealanders but to anyone who might get cancer or care about someone who does.
The American health-care system may be a crazy mess, but it is the prime mover in the global ecology of medical treatment, creating the world’s biggest market for new drugs and devices. Even as we argue about whether or how our health-care system should change, most Americans take for granted our access to the best available cancer treatments—including the one that arguably saved my life.
In mid-July 2007, after a routine mammogram, I was diagnosed with breast cancer. As cancer diagnoses go, mine wasn’t particularly scary. The affected area was small, and the surgeon seemed to think that a lumpectomy followed by radiation would eradicate the cancerous tissue. Surgery was scheduled for late August, allowing me to complete a planned move from Dallas to Los Angeles.
Two days before the surgery, I went in for magnetic resonance imaging; the MRI would be used to place wires marking the cancer hot spot. On the day of my surgery, I showed up at the UCLA radiology department expecting a routine procedure to insert the wires. Instead, I got news that turned me cold and shaky. The scan had detected a large, completely distinct hot spot in another area of the breast. My prognosis had suddenly become less cheery.
The post-surgery pathology report wasn’t reassuring. Although the tumor was indeed tiny—just seven millimeters across—cancer cells were all over the place; they had invaded my lymphovascular system and extended beyond the margins of both areas of surgically removed tissue. All six of the excised lymph nodes were malignant, a bad sign. The cancer also tested positive for a genetic trait called HER2, found in 20 to 25 percent of breast-cancer patients, which marked the cancer as particularly aggressive. Given the details of my case, with more surgery, traditional chemotherapy, and radiation, I had only a 50 percent chance of surviving.
I was lucky, however. Those were no longer the only treatment options. Adding the biological drug Herceptin, approved by the FDA in 2006 for use in early-stage cancers like mine, could increase my survival odds from a coin flip to 95 percent.
Starting in the late 1990s, oncologists had used Herceptin to extend the lives of patients whose HER2-positive cancers were advanced and metastatic, buying them months, and in some cases years, of life. Then, in May 2005, reports of clinical trials on patients with early-stage HER2-positive breast cancer electrified the American Society of Clinical Oncology’s annual meeting. Herceptin halved the chances of cancer recurrence: from one in six to one in 12 after two years. No one knew what would happen after five or 10 years, but the preliminary results were, to quote a New England Journal of Medicine editorial, “stunning.”
For breast cancer that hasn’t spread elsewhere in the body, Herceptin offers the possibility of a cure. It enhances chemotherapy, encourages the immune system to attack cancer cells, and hinders those cells from reproducing. A year of the drug, with one dose every three weeks (or, for some patients, along with weekly chemotherapy), is now the international standard of care for patients with cancers like mine. So, along with chemotherapy, another round of surgery, and seven and a half weeks of daily radiation, that’s what I got. The Herceptin treatments cost my insurer about $60,000. A year later, I have no evidence of disease and, though it’s still early, I have hope of staying that way indefinitely.
Not everyone in similarly rich countries is so lucky—something to remember the next time you hear a call to “tame runaway medical spending.” Consider New Zealand. There, a government agency called Pharmac evaluates the efficacy of new drugs, decides which drugs are cost-effective, and negotiates the prices to be paid by the national health-care system. These functions are separate in most countries, but thanks to this integrated approach, Pharmac has indeed tamed the national drug budget. New Zealand spent $303 per capita on drugs in 2006, compared with $843 in the United States. Unfortunately for patients, Pharmac gets those impressive results by saying no to new treatments. New Zealand “is a good tourist destination, but options for cancer treatment are not so attractive there right now,” Richard Isaacs, an oncologist in Palmerston North, on New Zealand’s North Island, told me in October.
A more centralized U.S. health-care system might reap some one-time administrative savings, but over the long term, cutting costs requires the kinds of controls that make Americans hate managed care. You have to deny patients some of the things they want, including cancer drugs that are promising but expensive. Policy wonks dream of objective technocrats (perhaps at the “independent institute to guide reviews and research on comparative effectiveness” proposed by Barack Obama) who will rationally “scrutinize new treatments for effectiveness,” as The New Republic’s Jonathan Cohn puts it. But neither science nor liberal democracy works quite so neatly.
In New Zealand, for example, Herceptin is a high-profile public issue. Until July 2007, Pharmac wouldn’t fund the drug for early-stage breast cancer. (It has covered the drug for the advanced disease since 2002.) In protest, activists filed lawsuits and sent petitions to Parliament. Pink-clad motorcycle riders circled the North Island in a “Bikers for Boobs” publicity stunt that got widespread attention. To pay for treatments, women who could do so have mortgaged their homes, dipped into their retirement savings, and held fund-raisers among their neighbors. Many have cut their treatments short to save money. “It’s not easy to sit down every three weeks and write a check out for four and a half thousand dollars,” says Chris Walsh, a breast-cancer activist who mortgaged her house to buy the drug, stopping after 15 doses rather than the usual 17.
Eventually, Pharmac decided that Herceptin was worth paying for—but only for nine weeks, or three treatments. Rather than citing costs, the agency claimed to be following the science. It pointed to a small Finnish trial that showed positive results from a nine-week regimen. The government’s public statements also emphasized potential cardiac complications from Herceptin. In our October interview, Dr. Isaacs, the oncologist, complained that government spokesmen have been “really skewing the way that people perceive the information. If I had not known what I know and had only listened to the media releases of Pharmac after their last decision, I would have thought, ‘Thank goodness we’re only giving them nine weeks of this terrible drug.’”
If a shorter treatment can achieve the same results, it makes sense to save money. Did the government have a reasonable case? Passions run high in New Zealand, so I asked a more distant source: John Glaspy, the director of the Women’s Cancers Program Area at UCLA’s Jonsson Comprehensive Cancer Center and my own oncologist. “The government of New Zealand is being accurate when they say that there is no convincing evidence that a year is better than nine weeks,” he said. But the Finnish study involved only a couple hundred patients, while the 12-month treatment trials included more than 13,000. The Finnish results thus are far less statistically certain. We know that a year works. With nine weeks, we’re guessing. “The scientific evidence supporting that it is equally good to do nine weeks compared to a year isn’t there,” says Glaspy.
You can err on the side of patient safety or on the side of cost. New Zealand chose the latter. It just didn’t want to admit its priorities, preferring to conflate economic and medical questions. No public figure wants to seem heartless, after all.
That surely accounts for the most damning inconsistency in New Zealand’s policy. When Pharmac was denying Herceptin to early-stage patients, it was fully funding the drug, without limitations, for women with advanced metastatic cancer, who are just buying time. A purely rational calculation would suggest the opposite course: letting patients with advanced cancer die while shifting the money to early-stage patients who, if treated, might survive for decades. But once a treatment has become standard practice, taking it away is hard.
Contrary to the dreams of technocrats, in the real world, politics and emotion matter. In that sense, New Zealand’s resistance on Herceptin is unusual. Breast-cancer patients are numerous, organized, and highly visible. They usually get what they want. Four days after the U.S. election, New Zealand also held national elections that marked a political change. The Labour Party is out. The National Party is in—and it promised to fully fund Herceptin, bypassing the Pharmac process altogether. “Herceptin funding was a significant election issue,” wrote Libby Burgess, the chair of the Breast Cancer Aotearoa Coalition, in a post-election e-mail. (Aotearoa is the Maori word for New Zealand.) “We feel we have emerged into the light after three years of struggle.”
New Zealand was a rare holdout. Most of Canada’s provinces approved Herceptin for early-stage patients within a few months of the May 2005 reports, much faster than the usual pattern. The same thing happened in the United Kingdom, where the health minister ordered the notoriously cheapskate National Health Service to cover Herceptin before the country’s cost-effectiveness bureaucrats had even issued a report. By contrast, kidney-cancer patients, who are less numerous and harder to treat, weren’t so fortunate. In August, those same bureaucrats, at the National Institute for Health and Clinical Excellence, better known as NICE, turned down four new therapies for that disease, arguing that they cost too much.
“They clearly got panic-stricken because there were four of them,” charges Gordon McVie, the former chief executive of Cancer Research UK and a senior consultant at the European Institute of Oncology in Milan. If all four drugs were available, a single kidney-cancer patient might run through the entire list, spending tens of thousands of pounds for each treatment. McVie, a prominent critic of the National Health Service’s approach to cancer care, still practices oncology one day a week in Bristol. When his English kidney-cancer patients need Sutent, one of the new drugs, he advises them to come to Milan for treatment. Patients have to cover their own drug bills, but they can buy Sutent more cheaply in Italy and don’t risk losing NHS coverage of the rest of their care.
That sort of private payment, and the two-tiered medicine it implies, is becoming common in supposedly universal systems. Private infusion clinics have been springing up all over Canada, offering cancer drugs to patients who either can pay themselves or have private health insurance, usually through an employer, that will cover the cost. While several Canadian provinces have allowed such private payment, this “topping up” has been controversial in the U.K. Some regional authorities threatened to exclude patients from all NHS coverage if they pay private providers for pricey cancer drugs. (Despite its name, the NHS works through local authorities that don’t necessarily provide uniform coverage, creating what critics call a “postcode lottery.”)
Going outside the system means two sets of doctors, making it harder to coordinate care. But allowing patients to buy drugs to be administered within the NHS would threaten the system’s egalitarian ideology. “Two patients with the same condition could find themselves lying next to each other on the same ward, yet receive very different treatments, not because that is what doctors advise, but because one person can afford to pay extra to top up their care while the other cannot,” Karen Jennings, the health chief for Unison, a public-employees union, wrote in a September op-ed. She warned that if such “co-payments are allowed, they will fast become the norm.” But kicking out patients who’ve paid taxes into the system, just because they spend their own money on cancer drugs, has become untenable.
Sure enough, in early November the health ministry announced a new policy allowing NHS patients to “top up” payments. In a concession to egalitarian treatment, the new policy calls for patients to receive the drugs outside of NHS wards—little comfort to traditional socialists. “The decision to allow a two-tier NHS is undignified and divisive,” opined The Lancet. But the journal’s definition of dignity has proved incompatible with the country’s democracy. Citizens expect to be able to buy the drugs they need, and politicians respond to public pressure. As an oncologist writing in the Journal of the Royal Society of Medicine observes, “Consumerism and social solidarity do not sit comfortably together.”
Looking at the crazy-quilt American system, you might imagine that someone somewhere has figured out how to deliver the best possible health care to everyone, at no charge to patients and minimal cost to the insurer or the public treasury. But nobody has. In a public system, trade-offs don’t go away; if anything, they get harder.
The good thing about a decentralized, largely private system like ours is that health care constantly gets weighed against everything else in the economy. No single authority has to decide whether 15 percent or 20 percent or 25 percent is the “right” amount of GDP to spend on health care, just as no single authority has to decide how much to spend on food or clothing or entertainment. Different individuals and organizations can make different trade-offs. Centralized systems, by contrast, have one health budget. This treatment gets funded, and that one doesn’t.
If I lived in New Zealand, I wouldn’t be dead, just a lot poorer. But if every place were like New Zealand, far fewer complex new drugs would get developed in the first place. And my odds of survival would be much, much lower.