Tuberculosis in Silicon Valley

My odyssey into the world of tuberculosis began with a simple remark by a well-connected friend in the summer of 2007: "Have you heard that the county TB clinic is overwhelmed with cases?"

Only a few months before, many journalists had been transfixed by the improbable transcontinental odyssey of Andrew Speaker, the Atlanta lawyer who, despite being infected with a highly infectious form of TB, had hopped on a plane to get married on a Greek island and then crossed back into the United States by car from Canada to avoid a probable quarantine order. Once his return was discovered, Speaker became the first person to be placed under an involuntary isolation order since 1963, triggering a national debate about holes in the public health safety net.

The Speaker case had raised questions at nearly every local paper about whether there were similar cases in their own backyards, but as with most episodic media frenzies, this one passed quickly. The tip from my friend gave me a chance to revisit the issue. She put me in touch with someone with direct knowledge of the Santa Clara County TB Clinic, and it turned out her information was absolutely correct. The clinic was stressed by a rapidly growing caseload, and most cases were among people who had come from other countries.

How could it be, I wondered, that a place as technologically advanced as Silicon Valley could have a problem with a disease that most people, until recently at least, thought was consigned to history books?

I cover demographics for the San Jose Mercury News, which means that I typically write about race, income, language, immigration, education and other demographic patterns. I try to tell stories about how individual lives are driving changes in the population. I am not a medical reporter; I had no experience covering public health before I started digging into TB.

As a demographics reporter, I knew two broad truths about Silicon Valley. One, it is among the most diverse places on the planet - a Waring blender of ethnicities and cultures - with the world's largest Vietnamese population outside Vietnam, the largest Indian population in the United States, a strong Latino influx, and one of the nation's largest communities of Chinese, Tagalog and Farsi speakers.

Second, because Silicon Valley is a great meritocracy, many of those new foreign arrivals are highly educated engineers and scientists. That meant that the Bay Area's TB sufferers were not just construction workers from Mexico City, but also software engineers from Bangalore and graduate students from China. The local increase in TB was a story where those two broad truths about life here would come together. That made it a story I could not ignore.

Differences between counties

With the help of two summer interns who were interested in public health, I called the public health departments in all 58 counties in California, trying to get a sense of how unique Silicon Valley's situation was. Many counties had seen no increase in TB. But many had seen a substantial increase, and the more immigrants who lived in the county - whether in the rural Central Valley or the urbanized Bay or Los Angeles areas - the bigger the TB problem tended to be.

I also began hearing about an upsurge in cases in California of MDR TB, which stands for multidrug-resistant tuberculosis and refers to strains of TB that don't respond to the standard regimen of antibiotics developed in the 1940s through 1960s to combat the infection. That was the same strain of TB that had infected Andrew Speaker, although he had been thought initially to suffer from the even-more-seriously drug-resistant XDR strain.

At this point, I was feeling completely overwhelmed as a journalist. Like many people, I had thought that TB had been pretty well dealt with in the United States, other than an outbreak I remembered from the 90s that was tied to the AIDS pandemic. (In fact, TB is much less of a problem in the U.S. than in much of the rest of the world, and nationally, the rate of infection has gone down since the 1950s.) I didn't even really know whether TB was a virus or bacteria, or how it spread. And with no experience as a medical writer, I didn't have a clue where I could get the medical knowledge I needed to unravel whatever was going on in California.

Given the higher rate of infection among the foreign-born, I also worried that if handled improperly, the story about Santa Clara County's TB burden could become just another immigrant attack story.

I also had the daily demands of covering my beat for a newspaper that was in the middle of dramatic staff cutbacks, meaning that as the staff shrank, my responsibilities expanded. It was impossible to expect to be detached from daily news for a month - or even two weeks - to educate myself about tuberculosis.

So I plodded along for several months, stealing a few hours here or there to do more reporting, but really just treading water with the story. My editor was supportive, as long as my research didn't interfere with my daily coverage. But I realized that this story was too good - and too complex and culturally loaded - to handle with a 30-inch Sunday takeout.

Along the way, I learned that it is a very difficult story to report because those people who are infected, especially immigrants, are ashamed about having an infectious disease. In case after case, I would sit down with a TB patient and go through a long interview, hoping I would be able to persuade him to use his name, only to have him say "no" at the end.

For instance, I met a young cardiologist, cut off from her daughter and husband in China for more than a year while she remained in San Francisco to be treated. I met a young Filipino man from San Jose, the point guard on his basketball team, who had never been sick before. (He felt he had to lie to his landlords about having TB because he was sure he would lose his apartment.) Then there was the nurse on the Peninsula who went deaf because of the often horrendous side effects of the chemotherapy drugs used to treat drug-resistant TB. None of them would allow me to use their names.

Getting around the stigma

Writing about TB is not like writing about cancer or diabetes or non-infectious diseases, because it is still shrouded by stigma, the way AIDS had been in the 1980s. Without being able to photograph and quote these people by name, I felt we could not put a compelling face on what can be a pretty awful disease. I was starting to think that I would never be able to pull off the stories I wanted to write.

Then, during the normally dead news week between Christmas 2007 and New Years, my source called again. A woman who had recently flown from India to Chicago and then on to San Francisco had appeared at the emergency room of Stanford Hospital with an infectious case of MDR TB. The U.S. Centers for Disease Control and Prevention was already trying to contact people who had been on the flight to see whether they had been infected with this dangerous and difficult- to-treat strain. On December 27, 2007, the Mercury News broke what quickly became a national story.

Largely because of the sources I had been building during those long months of intermittent research, we were able to stay ahead of other media in revealing details about American Airlines Flight 293. The Indian woman was actually much more contagious than Andrew Speaker, the Atlanta lawyer whose international flights had drawn major media attention - and an isolation order from the CDC - the previous May.

It was a nice scoop, but best of all, it gave me a news hook for the broader TB project. Instead of my editors saying, "You can work on this as long as it doesn't get in the way of other stuff," they began asking, "How can we help you move this story forward?"

By this point, I had a good relationship with a number of the local TB control officers in the Bay Area, who did everything they could to help me as long as it didn't interfere with patient confidentiality. Our interests had converged because even in the face of a growing caseload, they were facing major cuts due to California's budget crisis. They wanted their story out.

To my mind, the county TB controllers were the real heroes of the story. The state Department of Public Health, perhaps because of politics, was totally obstructive and would not even grant me access to the top state TB officials unless a public information officer was present.

I soon got another break: California's county TB controllers were holding a joint conference in San Diego with the North American branch of the International Union Against Tuberculosis and Lung Disease, which would be attended by state TB officials (without their flaks), academics who study TB, and several top World Health Organization officials. No journalist had ever attended one of their meetings, they told me. But the California TB controllers were willing to let me sit through five days of lectures about drug resistance, epidemiology, drug research and social factors related to TB. It was a way to acquire in five days the kind of expertise and sources that otherwise would have taken months to collect.

My attendance at the conference helped me deepen my relationships with state TB sources and enabled me to stay on top of the cuts to the state TB budget, the jump in the Bay Area's TB rate in the Bay Area in 2007, and the discovery that a second person on the infected woman's flight from India had tested positive for TB.

Ultimately, the Mercury News' Emmy-winning videographer, Dai Sugano, and I produced a multi-media documentary, "At the Global Crossroads: the Threat of TB in the Bay Area," which focused on several named TB patients. I also wrote three text stories, which explained how the strong links to other countries had contributed to increases in TB rates in 2006 in four out of the five Bay Area counties - and to San Jose's dubious distinction as the American city with the highest TB rate. Ninety percent of Santa Clara County's 241 TB cases in 2007 were among people born in other countries.

Lessons Learned

There are a number of journalistic lessons, and probably some lessons particular to covering public health, that I took from the project.

I've read that the real skill in poker is not the ability to bluff; it's having the patience to wait for a good hand to come along. That's what I did with this story. I could have probably published an OK Sunday piece months before the multimedia project ran. But that story would not have included named patients, and it would have lacked the broader global vision that the final stories had. As I continued reporting, I started to see that it wasn't so much a simplistic story about immigrants; instead, the story was about how TB is an inevitable byproduct in the most globalized place in America.

I'm not sure that I would have captured that nuanced, but crucial, difference if we had not been forced to take so long reporting the project. The stories revealed the loopholes in U.S. public health defenses, such as the fact that there is no screening for temporary workers who are not technically immigrants, but who may end up living 10 years or more in the United States, working for companies like Intel or Google or Hewlett-Packard.

In addition, as a public health newbie, I hadn't counted on how long it would take me to master the basic medical facts of infectious disease and its transmission, and how difficult it would be to build that expertise while I also had to cover a beat for a daily newspaper. If you are confronted with a similar challenge, the only thing I can counsel is patience. Remember that you are probably making progress even when it feels like you're not.

I also learned how important it is to take play different levels of government against each other. I never would have been able to do this story if I had had to rely on state health officials alone. It was the county health officials, the doctors closest to the actual patients, who spent long hours serving as my TB teachers, encouraging me to keep going when I got discouraged, providing an introduction to patients, and serving as my backdoor communication contacts to doctors in other parts of the bureaucracy that were less friendly toward my efforts.

Last, I hadn't understood how strong a stigma people with an infectious disease feel, or how difficult it would be to get them to go on the record so they could be photographed as well as named in the story. This may have been the most difficult aspect of the whole project.

Did the stories make much of a difference? It's hard to know. The Schwarzenegger administration went forward with the threatened budget cuts, wiping out a genetic diagnostic tool that California had developed to detect drug-resistant strains of TB much more quickly. Much of the western United States depended on that diagnostic tool. As a result, as the U.S. becomes a more global place, the country may be even more vulnerable to dangerous strains of infectious -- and frequently drug-resistant -- disease imported from the developing world.

Mike Swift, former demographics reporter for the San Jose Mercury News, now covers the Internet.