Partnership Among National Foundations

The Robert Wood Johnson Foundation's Response to Emergencies
September 11th, Bioterrorism, and Natural Disasters By Stephen L. Isaacs

This chapter by Stephen Isaacs, coeditor of The Robert Wood Johnson Foundation Anthology, examines how the Foundation has responded to emergencies that take lives and threaten the public’s health. The most traumatic event was the terrorist attacks of September 11, 2001, but natural disasters (such as earthquakes and hurricanes) and bioterrorism (for example, the 2001 anthrax attacks) are situations that also require an emergency response. Isaacs explores all three situations.

For a foundation such as The Robert Wood Johnson Foundation, which is focused on long-range and highly targeted goals, responding to immediate emergencies—particularly of the scale of September 11th—raises profound issues. For example, should the foundation aim simply at helping agencies cope with emergencies, or should it relate its assistance to the Foundation’s priorities? Should it take the lead or wait to see what others do and then look for a niche? Should it work alone or jointly with others?

A key issue—one that affects the philanthropic sector as a whole—is the role of foundations in situations where the support of others becomes overwhelming. For example, September 11th brought forth an enormous outpouring of charitable giving by individuals, foundations, corporations, and the U.S. government. Similarly, the anthrax-laced letters mailed shortly after September 11th and the threat of subsequent bioterrorist attacks triggered a huge federal investment in states’ emergency preparedness systems. Isaacs explores how the Foundation struggled to carve out a role for itself in these circumstances and analyzes where foundations can fit in when the resources of others have the potential of preempting the field.

Although this chapter emphasizes the institutional response of The Robert Wood Johnson Foundation to September 11th and other emergencies, the personal response of staff members should not be forgotten. In the immediate aftermath of September 11th, senior program officer Susan Hassmiller, a nurse and member of the board of the American Red Cross, volunteered her time to help organize the relief effort and did not return to work for another two weeks. Administrative assistant Sheri DeMarchi organized donations of food, clothing, and other needed items. Other staff members gave money, blood, and time. The staff wanted to help in whatever way it could, and it did so well beyond the institutional response that Isaacs chronicles in the following pages.

J.R.K.

September 11, 2001. The mood at The Robert Wood Johnson Foundation’s headquarters in Princeton, New Jersey, that morning was somber, bewildered, shocked, disbelieving. By 9:00 a.m., many of the Foundation’s staff members were gathering in small groups around television sets in three of the Foundation’s conference rooms. They watched as the second plane hit the North Tower, both of the Twin Towers imploded, a third plane crashed into the Pentagon, and a fourth crashed in a field outside of Pittsburgh. They talked in whispered tones, wondering how many planes were still in the air, how many had been hijacked, and, most important, whether any friends, colleagues, or loved ones had lost their lives. People called their wives, husbands, parents, children, and friends. Some went home to be with them. Many stayed at the office, alternately watching the television, listening to the radio, talking with colleagues, listlessly trying to get some work done, taking consolation in the presence of their coworkers. A call came from the husband of a former staff member who was working in one of the towers; she was safe. The four staff members who were traveling on September 11 called in to say that they, too, were safe. Toward the end of the day, Steven Schroeder, the Foundation’s president at the time, went from office to office—talking to each member of the staff, offering words of encouragement, or, sometimes, just a pat on the arm.

The next day, at around noon, Schroeder called together the “management group”—the Foundation’s senior leadership consisting of its vice presidents and other officers—to discuss how the Foundation should respond to this horrific event. As might be expected after such a catastrophe, the discussion was free-flowing and inconclusive. Schroeder appointed Nancy Kaufman and Paul Jellinek, vice presidents of the Foundation at the time, to head a task force charged with seeking and sifting through ideas, finding out what others were doing and what the gaps were, and coming up with a response appropriate to the scale of the tragedy and the Foundation’s expertise.

That afternoon, the entire staff met in the Foundation’s amphitheater. It was standing room only as Jellinek and Kaufman summarized the management group discussions about how the Foundation could respond to the tragedy. The staff quickly jumped in with their ideas. Make sure our grantees in the areas are OK. See who needs additional help. Work to avoid a backlash against Americans of Arab descent. Make sure that disadvantaged people affected by the tragedy are taken care of. Remember the Oklahoma City bombing where the mental health needs of people affected by the trauma lasted many years. Schroeder concluded the meeting by observing how proud he was of the quality and the compassion of the staff; how, in this time of great crisis, it had come together as a family; and how, in the rush to do something special for the victims of September 11th, staff members should remember, and take pride in, the work they do every day to improve the well-being of their fellow Americans. He urged all of the Foundation’s staff members to pass their thoughts on next steps to colleagues on the task force.

This was not, of course, the first time the Foundation had been called upon to aid victims of a disaster. Over the years, the Foundation has contributed to the relief efforts of organizations aiding victims of natural disasters such as earthquakes, hurricanes, floods, and tornadoes. Nor was it the last. The anthrax attacks that followed shortly after September 11 demonstrated the weakness of the nation’s public health system to respond to bioterrorism. How to respond to disasters, whether natural or human-made, has raised questions for The Robert Wood Johnson Foundation and, indeed, for all philanthropy—questions such as how to balance a compassionate response to relieve suffering and the need to stick with long-term strategies; whether to play a leadership position or wait to fill in gaps left by others; and what role is left for a foundation after the federal government, the voluntary sector, or individuals have invested huge amounts of money toward addressing a problem. Dealing with questions such as these becomes more important at a time in our nation’s history when the threat of terrorism raises the possibility of more, and more horrific, emergencies that may demand the attention of foundations.

Most of the Foundation’s work in disaster relief prior to September 11th had been in the form of grants to support the relief efforts of the American Red Cross. “The Robert Wood Johnson Foundation’s response has been that of a good neighbor,” said Steven Schroeder. “We haven’t gone about giving assistance in an organized, systematic way, but that’s the nature of disaster relief.” In 1989, the Foundation awarded the American Red Cross $10,000 to provide relief to the victims of Hurricane Hugo, which ravaged South Carolina and other states, and $50,000 to aid victims of the Lomo Prieta earthquake in Northern California. In subsequent years, the Foundation continued supporting the Red Cross following natural disasters: $50,000 in the wake of Hurricane Andrew in 1992; $500,000 following the 1993 flooding in the Midwest; $100,000 after tornadoes and torrential rains in 1997 had left thousands of people homeless in eight states (Arkansas, Kentucky, Indiana, Illinois, Ohio, West Virginia, Tennessee, and Mississippi); $100,000 following ice storms that left hundreds and thousands of homes and businesses in the Northeast without power in 1998; $1 million following Hurricane Georges in 1998; and $1 million following Hurricane Floyd in 1999.

Not all of the Foundation’s support to relief efforts went to the Red Cross. Typically, following a natural disaster, a Foundation staff member would call grantees in the area to find out whether they needed additional assistance. On the basis of such phone calls, the Foundation gave $238,000 to ASPIRA, a grantee in Puerto Rico under an antidrug program called “Free to Grow,” for five emergency assistance centers after Hurricane Hortense had devastated the island in September 1996. Two years later, when Hurricane Georges laid waste the island, the Foundation awarded a $400,000 emergency grant to ASPIRA.

Similarly, in 1997, the Foundation gave more than $500,000 to the Grand Forks, North Dakota, health department and the North Dakota state health department after torrential rains had caused the Red River to break through the dike, water engulfed the entire city of Grand Forks, and nearly all of its fifty thousand residents had to be evacuated.

Perhaps the closest parallel to the attacks of September 11th was the bombing of the Alfred P. Murrah Federal Building in Oklahoma City in 1995. There the Foundation awarded the University of Oklahoma Health Sciences Center $96,000 to learn more about post-traumatic stress syndrome and how best to address it. The Foundation’s grant enabled the university to carry out surveys of rescue workers, their families and direct victims of the bombing, and the general population in order to document long-term treatment needs.

If the Oklahoma City bombing taught the Foundation anything important for September 11th, it was, said Steven Schroeder, that “events like these have a long tail. The families of the victims of that tragedy needed counseling for many years after.”

But, on the whole, neither the response to the Oklahoma City bombing nor the response to natural disasters offered much in the way of guidance on how The Robert Wood Johnson Foundation could best respond to a tragedy of the size, scale, and immediacy of September 11th.

At the Foundation’s management group meeting on September 12, Paul Jellinek made an impassioned plea to put $100 million on the table— half to be awarded immediately, half later. “I didn’t know exactly how the money should be spent,” he recalled. “I just knew that a tragedy the magnitude of September 11th deserved a response of a similar magnitude.” At the other end of the spectrum, Nancy Kaufman, a public health nurse by training who oversaw many of the Foundation’s emergency response grants, counseled a more cautious approach. “There will be a lot of players,” she observed, “and it’s not clear how we’ll be needed.” Based on her past experience, she noted that “everybody rushes in immediately after a disaster, but it’s the aftermath that needs attention. You have to think about the long term—what happens after the federal agencies and everybody else has disappeared.”

The management group decided not to jump in with $100 million. It was a huge amount of money for a foundation that had already overspent the year’s budget. Besides, it wasn’t at all clear what the money would go for or whether it would force the Foundation to reduce spending on its traditional priorities. Rather, the management group agreed to request a $5 million authorization from the board (it was quickly approved) and to explore what The Robert Wood Johnson Foundation could do that others weren’t doing in the wake of September 11th. The small task force led by Jellinek and Kaufman was entrusted with the job of finding gaps in the response to September 11th where the Foundation could make a genuine contribution.

This meant having some idea of what others were doing—not an easy task in the weeks and month following September 11th. Schroeder called Susan Berresford, president of the Ford Foundation, Rebecca Rimel, president of the Pew Charitable Trusts, and other foundation heads to find out what their foundations were up to. Other staff members spent many hours on the phone calling grantees—particularly those in New York City—to find out what they were doing and whether they needed additional help.

In fact, although it was not wholly clear in the fog of the time, there was an awful lot going on. Voluntary organizations such as the American Red Cross, the Salvation Army, and Safe Horizon set up operations centers at Pier 94 to provide immediate emergency relief to those victimized by the attacks on the World Trade Center. The Federal Emergency Management Agency, or FEMA, was heavily involved. In fact, the federal government’s $21 billion contribution to New York City’s recovery through FEMA and other federal agencies dwarfed those of all other funders combined.¹

On the afternoon of September 11, Lorie Slutsky, president of the New York Community Trust, called Ralph Dickerson, her counterpart at United Way of New York City, and invited him to come downstairs (the two organizations have offices in the same building) to a staff meeting to talk about what to do. “We were the two largest charities funding services in New York City, with different areas of expertise and different funding bases,” she recalled. “That all suggested that there might be real synergies in a partnership.” By the close of the day, the two had agreed to establish a joint fund—the September 11th Fund.²

Foundations swung into action. Within days of the attacks, the Ford Foundation had pledged $5 million to the September 11th Fund and another $5 million for other relief efforts. On September 13, the Lilly Endowment, based in Indianapolis, pledged $30 million to the relief and recovery effort. Other foundations, including corporate foundations, contributed generously. Many donated money to the relief organizations or to the funds set up after September 11th. Others targeted areas that were of particular importance to them. The Andrew W. Mellon Foundation, for example, pledged $50 million to assist New York City cultural and performing arts institutions affected by the attacks; the Rockefeller Foundation directed much of its $5 million pledge to support the families of non-English-speaking workers who had lost their jobs; the Citigroup Foundation pledged $15 million to provide college scholarships to the children of victims of the attacks. All told, noncorporate foundations contributed $213 million, while corporations and corporate foundations contributed $622 million.³

The September 11th attacks galvanized a public outpouring of unparalleled scope. Sixty-five percent of American households contributed to one of the victims’ relief funds.⁴ Total contributions reached $2.5 billion; the American Red Cross’s Liberty Disaster Fund received some $998 million;⁵ the September 11th Fund, $503 million; and the Twin Towers Fund, $108 million.⁶ In addition, as part of the airlines bailout bill passed in December 2001, Congress established the September 11th Victim Compensation Fund, which was expected to provide an average of $1.5 million to each of the families of those who died in the attacks.⁷

Amid the confusion that lasted for months after the attacks—rescue workers combing the rubble for body parts, money pouring into the funds, foundations responding to the tragedy in an uncoordinated fashion, uncertainty about what would come next, anthrax attacks—staff members of The Robert Wood Johnson Foundation called new grantees, old grantees, officials of state health departments, and others they knew in order to find projects that were being overlooked or where the Foundation could make a difference.

The Foundation’s First Grant:
A Survey on the Public’s Reaction to September 11th

The Foundation’s first grant in response to September 11th was made two weeks later, on September 27. It was for $79,000 to enable the National Opinion Research Center in Chicago to conduct a survey of the public reaction to the attacks that could be useful to the American Red Cross, FEMA, and the government.

Establishing an Emergency Medicaid Application System The second grant, for $750,000, was approved on October 30 and went to the United Hospital Fund in New York City. It came about by serendipity rather than calculation. Michael Rothman, a senior program officer at the Foundation, read an article in the September 28 New York Times noting that the collapse of the Twin Towers had cut the computer link between the city’s Human Resources Administration offices and the state eligibility processing office so that Medicaid applications could no longer be processed. As a result, thousands of poor people in New York City and nearby counties were left without their usual access to health care. Rothman called Kathryn Haslanger, who handled Medicaid coverage issues at the United Hospital Fund, to see what exactly the problem was and whether The Robert Wood Johnson Foundation could be of help.

Haslanger explained that given the breakdown in the system, the federal, state, and city governments had created a temporary Disaster Relief Medicaid program—one that would last only between September 24, 2001, and January 31, 2002—that did away with most of the paperwork. During this four-month period, people could sign up for Medicaid (or a new program for low-income adults—Family Health Plus) with virtually no questions asked or documentation required. However, New York City’s Human Resources Administration, charged with operating the program, did not have enough money to carry it out and had requested help from the United Hospital Fund.

If it had not been for the September 11th disaster, the government would never have created a program where people could get Medicaid benefits without any verification of their income or even that they lived in the state. It appeared to be a once-in-a-lifetime natural experiment: Would more people enroll in Medicaid if paperwork and bureaucracy were eliminated? Would they lie to get enrolled? If more people enrolled and fraud was limited, could it be a model for other states?

Haslanger quickly prepared a proposal on behalf of the United Hospital Fund and submitted it to the Foundation. The proposal requested funds for seven components of the Disaster Relief Medicaid program that the city’s Human Resources Administration had developed collaboratively with the United Hospital Fund. The Foundation rapidly approved the grant, much of which was directed to spreading the word about the program. The Henry J. Kaiser Family Foundation also contributed to the program’s implementation and evaluation.

As it turned out, people flocked to the Disaster Relief Medicaid program. In the four months, 350,000 low-income New Yorkers enrolled—about ten times the volume expected in a typical four-month period.⁸ While it is not known how many people falsified their income or place of residence in order to enroll or how many continued once the program ended in February 2002, early statistics indicated that roughly half of those who had enrolled in the emergency plan applied for traditional Medicaid after it ended and that about three-quarters of those applicants qualified for benefits.⁹

The September 11th attacks caused psychological trauma that will, no doubt, last for many years. Two grantees under the Foundation’s Local Initiative Funding Partners program¹⁰—one a clinic located in Chinatown, within walking distance of Ground Zero, the other a clinic a little farther uptown serving primarily Latinos—were overwhelmed by the number of requests for counseling. In response to phone calls and follow-up from Foundation staff members, they requested funds so that they could provide additional mental health counseling services. In January 2002, the Foundation awarded $150,000 to each of the clinics. The Foundation later provided $198,000 to the Asian American Federation of New York to assess the mental health services that were being provided and that would be needed by the Chinatown community.

Between January and March 2002, the Foundation awarded three other grants focused on dealing with post-traumatic stress and anxiety after September 11th: to the Families and Work Institute in New York City ($180,000) to enable teachers and child-care workers to help young children cope with their fears resulting from the attacks; to the American Academy of Pediatrics ($100,000) to put together materials on helping children cope with the event into a single on-line “toolkit”; and to the Columbia University School of Social Work ($50,000) to add questions about the impact of September 11th to a survey on individual and family well-being in New York City.

Within days of the attacks, Nancy Kaufman called George Hardy, the executive director of the Association of State and Territorial Health Officials, or ASTHO, and asked how the Foundation could be of help. Hardy responded, “We’re inundated with requests for information. We can’t even return calls to CNN, the New York Times, and the Washington Post. We need communications help. Fast.” The Foundation got in touch with Burness Communications, a consulting firm and Foundation grantee located in Washington, D.C., and asked it to provide whatever help was needed. “In less than an hour,” says Hardy, “I got a call from the head of the company, Andy Burness. He sent over two people the very next day. They took over handling calls from the press—made us responsive to the media. They also helped us develop a longer-range strategy. And the amazing thing: the Foundation didn’t even ask for a proposal.”

On January 11, 2002, a cold, rainy, and generally miserable winter day, Paul Jellinek read a letter from the Art Science Research Laboratory, Inc., a small nonprofit organization headed by sculptor Rhonda Roland Shearer and her husband, paleontologist Stephen Jay Gould (who died in May 2002). The letter said that police and firefighters at Ground Zero were in desperate need of clothing and equipment, even basics such as boots, goggles, and respirators; that the Art Science Research Lab, which was on Spring Street just seventeen blocks from Ground Zero, was providing them; but that it was running out of money and needed financial support to continue its work. “When I read the letter, I thought, ‘This is really different,’” Jellinek recalled. “First of all, it was highly specific. Second, it was cosigned by Stephen Jay Gould, whom I knew, of course, by reputation.”

“If it was true, the lack of clothing and equipment was shocking,” said Jellinek. “But was it true?” Jellinek asked Sherry DeMarchi, an administrative assistant at the Foundation and head of its Giving Committee, to see if she could find out. DeMarchi made a number of phone calls, among them to a fire chief in Brooklyn who told her, “My guys aren’t getting the basics to do the job.”

So Jellinek picked up the phone, called Rhonda Shearer, and said he’d like to meet with her as soon as possible. In less than two hours, he was in the Art Science Research Lab warehouse. The place was filled with racks of coats, boots, overalls, respirators, goggles, and the like.

On September 11, Shearer was returning from Europe on an Alitalia flight when the captain announced that there had been an emergency in New York and that all airspace in the United States was closed. “I thought, ‘Oh my God. Nuclear war,’” she recalled. “I talked my way into the cockpit. The captain told me that there had not been a nuclear attack but that fires were burning in lower Manhattan. My daughter was there. I was in a controlled panic.” Since the U.S. borders were sealed, the plane took a detour and landed in Halifax. Shearer was able to get in touch with her daughter and found out that she was all right.

In fact, her twenty-three-year-old daughter, London Shearer Allen, had been hard at work. Because her mother was a sculptor, Allen knew the importance of using a respirator to filter out dust. And there was a lot of dust at the site of the attacks. She donated the respirators that were at the studio to the rescue workers at Ground Zero and then talked with other sculptors, who willingly donated their respirators. When Shearer arrived home three days later, her warehouse, which by a fortunate coincidence was vacant, was already being used as a supply depot.

“As soon as I got back, I saw that there was a tremendous need,” Shearer recalled. “Not just respirators, but hard hats, overalls, spades . . . just about everything.” The Rockefeller Foundation came through with a $60,000 emergency grant. Contributions began coming in. Representatives of the fire department, the Port Authority, and the police department put together an equipment list. Shearer and her daughter started stockpiling items, using her studio as a warehouse. She got a pass that allowed her to drive a truck to Ground Zero. Her staff of volunteers dropped in at supply posts manned by the Red Cross, the Salvation Army, and FEMA to find out their immediate needs. She and her staff of volunteers continued making deliveries to the police, firefighters, and Port Authority workers, as well as relatives of the victims searching for remains at Ground Zero and later at Fresh Kills (the site in Staten Island where the debris was brought). When the weather started turning nasty in December, Shearer and her colleagues supplied warm winter clothing. With funds running low, Shearer sent out a letter-proposal to about one hundred charities and foundations—the one that came to Jellinek’s attention.

When Jellinek got to Ground Zero with Shearer, the firefighters, police, and Port Authority officers confirmed the problem. The shelves of the supply sheds were either empty or often had the wrong kind of equipment; most important, the firefighters, police, and volunteers were using the equipment supplied by the Art Science Research Lab.

A proposal was brought to The Robert Wood Johnson Foundation’s management group the following Monday. On January 23, 2002, the Foundation approved a grant of $700,000 for the Art Science Research Lab.

The grant allowed Shearer and her group to buy several months’ worth of clothing, equipment, and supplies. Daniel Nigro, who recently retired as chief of the New York City Fire Department, said, “From the firefighters’ perspective, Rhonda and her group were wonderful. We knew we could rely on them. Others came in, helped for a while, and then left; but they stuck with it. They were there for us.” Lieutenant Paul Brown of Engine Company 290 in Brooklyn wrote, “In many instances, the Art Science Research Lab quickly and efficiently provided urgently needed equipment and supplies under circumstances where the normal supply channels would have taken days or weeks. They have been able to provide supplies, which are outside the abilities of federal, state, and city agencies to provide. This group has allowed us to continue working without waiting for slow supply deliveries and fighting red tape.”

“Slow supply deliveries?” “Red tape?” Given this kind of criticism, it was hardly a surprise that tension developed between Shearer, an outsider doing effective work, albeit in an unorthodox, nonbureaucratic way, and the city’s Office of Emergency Management, which was charged with supplying the rescue workers and which, according to the New York Times, “when crisis struck, found itself marginalized and overwhelmed.”¹¹ The Office of Emergency Management, whose own command center on the twenty-third floor of 7 World Trade Center had been destroyed on September 11th, viewed Shearer and her group as interlopers, cast doubt on her credibility, and attempted to revoke her credentials.¹² (One observer noted that the Office of Emergency Management might also have resented the Art Science Research Lab’s supplying victims’ relatives who, in the opinion of some of its officials, shouldn’t have been sifting through the rubble in the first place.) For her part, Shearer felt that the Office of Emergency Management simply didn’t understand basic supply management. “For God’s sake,” she said. “They weren’t even stockpiling items. They weren’t keeping track of shipments. And a lot of the time, they would be satisfied supplying the wrong things.” Whatever bad blood might have existed, there are no villains in the story. People were doing their best, forced to “wing it” in an unprecedented, horrific, and evolving situation.

In March 2002, the Art Science Research Lab needed at least $400,000 more to cover costs during April and May, and Shearer came back to The Robert Wood Johnson Foundation. This time the Foundation agreed to provide $100,000 as a challenge grant, with the proviso that the Lab would have to come up with the additional money from other sources. Shortly after, the New York Community Trust agreed to meet the challenge, and awarded $400,000 to the group, which was fortunate, since Shearer had put her property up as collateral to get a loan to buy more supplies for workers at Ground Zero.

Looking back, the easiest thing for the Foundation to do would have been simply to make a donation to the September 11th Fund, much as the Foundation had given money to the American Red Cross following earlier disasters. Originally, the Foundation’s task force had planned to do just that—give half of the $5 million to the September 11th Fund. “But we moved cautiously,” said former Foundation vice president Paul Jellinek. “We wanted to know how decisions about funding were going to be made and who was going to get funded. By the time we finally received the information that we needed to make a decision, Joshua Gotbaum, the September 11th Fund’s chief executive officer at the time, had announced that they had enough money and didn’t need any more.”

This typifies the posture the Foundation adopted: waiting to see what others were going to do and expecting to fill in the gaps. But because of the outpouring of generosity from the American public, the gaps never appeared, and the Foundation never found a niche. With the exception of those few grants that the Foundation’s staff sought out—to the Art Science Research Lab, the United Hospital Fund, and community agencies in the vicinity of Ground Zero, for example—it stayed largely on the sidelines. As a result, it spent only $2 million of the $5 million that had been authorized.

Whether this represents an overly cautious or an appropriately prudent response is a matter of judgment. Many people feel that the Foundation could have done more—that its response to this event that occurred only fifty miles away was not commensurate with the scale of the tragedy. One Foundation program officer expressed it concisely: “The response to September 11th was mainly waiting, waiting, waiting. We were waiting to see where we were needed; we didn’t want to just jump in. It was frustrating that we didn’t do more. . . . that we couldn’t do more.”

Others feel that while the Foundation might have played more of a leadership role, such a role wasn’t appropriate. Unlike, say, the Ford Foundation, which is located in midtown Manhattan and played a central role, The Robert Wood Johnson Foundation lies more than an hour away. Commenting on the geographical distance, Steven Schroeder said, “There is a real question about how active a leadership role a Princeton-based foundation can and should play in responding to a tragedy like September 11th.”

Moreover, there is a question about how much a foundation—any foundation—should deviate from its basic mission in order to respond to an emergency, even one as devastating as that caused by the attacks on the World Trade Center and the Pentagon. The Foundation’s decision was, ultimately, not to deviate much from its more strategic approaches to improving Americans’ health and health care.

The events during and following September 2001 posed new questions about how foundations can best support the public health system in the area of disaster preparedness, including readiness for potential bioterrorist attacks. Given its mission to improve health and health care, these questions are particularly relevant for The Robert Wood Johnson Foundation.

Less that a month after the attacks of September 11th, the nation reeled from another kind of terrorism—biological warfare. It began in south Florida. On Monday, October 1, Robert Stevens, a photo editor for the Sun, a tabloid in Boca Raton, began to feel ill. By Tuesday he was running a high fever and was incoherent. He began having convulsions. His wife took him to the emergency room of the John F. Kennedy Medical Center in Palm Beach County. Doctors performed a spinal tap. Stevens’ spinal fluid was filled with rodlike bacteria that looked initially like anthrax. The diagnosis was tentative since there had been only eighteen cases of inhalation anthrax in the past hundred years, and the last case had been reported a quarter of a century earlier. The state laboratory confirmed the diagnosis of anthrax on October 4. Stevens lapsed into a coma and, on October 5, died of respiratory failure.

Even before Stevens died, a team of investigators from the Centers for Disease Control and Prevention (CDC) was rushed to Boca Raton. Tests of the mailroom at the Sun revealed that the mail bin was rich with anthrax spores. The head of the investigative team called the CDC director, Jeffrey Koplan, and reported, “We have evidence for an intentional cause of death of Robert Stevens.”¹³ The source, apparently, was a letter (never found) sent to the mailroom of the Sun. It was followed by a spate of letters containing anthrax spores (analysis of one of the letters revealed that the anthrax was finely milled, making it easy to float and enter the lungs of the victims) sent to, among others, Tom Brokaw at NBC, the New York Post, Senator Tom Daschle, and Senator Patrick Leahy. Many of the letters were mailed in Trenton, New Jersey, and some were sorted in the post office of the township where The Robert Wood Johnson Foundation headquarters is located.

Between September 2001 and January 2002, twenty-two people were infected with anthrax; five of them died. The public health system—the first line of defense against anthrax attacks—was severely strained. Laboratories were pressed to identify thousands of samples of suspicious powders. State and local health departments were inundated with requests for analyses of environmental samples, nasal swabs, and clinical specimens. Thirty-three thousand people were placed on antibiotics. In addition, the anthrax attacks crippled businesses, postal services, and government (the Hart Senate Office Building was closed for more than three months; it cost $23 million to decontaminate it).¹⁴ Moreover, they contributed to the growing sense of vulnerability the nation had felt since September 11th.

The anthrax attacks spotlighted the serious weaknesses in the nation’s public health system to cope with a biological terror attack.¹⁵ In a sense, the nation was fortunate that the anthrax was disseminated by means of a few letters. Had it (or, even worse, smallpox) been sprayed from a crop duster over a populated metropolitan area, the death, illness, and disruptions would have been incalculably worse.

In a sense, the anthrax attacks were a shot across the bow. But it was certainly not the first time that biological or chemical agents were used as an instrument of war or terror. Roman armies used infected animal and human corpses to contaminate their enemies’ drinking water. During the siege of Kaffa in 1346, the attacking Tartars catapulted plague-infected corpses into the city held by the Genoan army. During the French and Indian War in the mid-1700s, British commander Sir Jeffrey Amherst ordered smallpox-contaminated blankets to be distributed to Delaware Indians. In World War I, mustard gas, chlorine, and phosgene were all used in combat. In World War II, the Japanese military dropped plague-infested fleas over populated areas of China.

More recently, in 1984, members of the Rajneeshee cult contaminated restaurant food in Wasco County, Oregon, with salmonella and poisoned at least 750 people. In 1995, the Aum Shinrikyo religious cult released sarin gas in the Tokyo subway, causing nineteen deaths and thousands of injuries. In 1988, Saddam Hussein’s military used chemical weapons (believed to include mustard gas, sarin, and VX) on Kurdish inhabitants of Halabja and Goktapa.¹⁶ Most chilling yet, the former Soviet Union is known to have had programs to develop genetically modified strains of smallpox, plague, and anthrax capable of defeating drugs, antidotes, and vaccines.¹⁷

Although the nation’s lack of preparation for a biological attack had been recognized as a problem, it was not a top priority before September 11, 2001, but federal, state, and municipal governments were taking some action. For example, between 1998 and 2001, the amount of money in the federal budget earmarked for preparing the nation for, and responding to, chemical, biological, and nuclear attacks rose from $645 million to $1.6 billion—a nearly 150 percent increase.

Notwithstanding this attention, the nation’s—and particularly the public health system’s—ability to respond to a bioterror attack was weak. As far back as 1988, the Institute of Medicine’s Committee for the Study of the Future of Public Health concluded, “The nation has lost sight of its public health goals and has allowed the system of public health to fall into disarray.”¹⁸ Two exercises that simulated bioterror attacks—Operation Topoff in May 2000 and Dark Winter in June 2001—showed that leaders were unprepared, crucial information was lacking, vaccines were limited, the health care system was quickly overburdened, and state and federal officials disagreed about who was in charge.¹⁹

However, it took the events of and after September 11th for the nation to recognize that its public health system is the first line of defense against bioterrorism and that it was still in disarray.²⁰ Recognizing the importance of addressing the crisis immediately, Congress passed the Public Health Security and Bioterrorism Preparedness and Response Act. Designed to improve the CDC’s capacity to deal with bioterrorism, increase the capacity of state and local public health agencies and hospitals, develop a coordinated network of public health labs, conduct research on vaccines, and enhance the government’s authority to safeguard the nation’s food and water supplies. It was signed into law in June 2002. Six months earlier, in December 2001, Congress appropriated $3 billion to combat bioterrorism, including more than $1 billion to improve state and local public health capabilities and hospital preparedness.

When the anthrax attacks became news in October 2001, the Foundation staff took to the phones, as it had done after September 11th. Nancy Kaufman, for example, called the heads of the National Association of County and City Health Officials and the Association of Public Health Laboratories to ask if they needed help getting information out to the public. They both said yes, and the Foundation provided assistance, similar to that which it had provided in the immediate aftermath of September 11th, to both organizations. Scott Becker, executive director of the Association of Public Health Laboratories, said, “We were deluged. The Foundation’s quick response was critical. It not only got us through the immediate crisis but also helped us to develop a long-range communications strategy.”

This was a stopgap measure to solve an immediate problem. For the longer term, the Foundation appointed a bioterrorism working group chaired by its two senior vice presidents, Risa Lavizzo-Mourey (now the Foundation’s president) and Michael McGinnis, charged with developing a cohesive strategy.²¹

As in the case of September 11th, the Foundation waited to see what the federal government would do. Even as the Foundation grappled to find its niche, however, it made a number of grants that related to the public health system’s capacity to deal with bioterrorism.

One cluster of grants helped organizations trying to understand biological terror and to chart a course of action in responding to it. These included awards to conduct public opinion surveys; to hold meetings or disseminate results of meetings on bioterrorism; to add sessions on bioterrorism to previously planned meetings; and to establish a collaborative network of academic and research organizations that would design ways to respond to public health emergencies.

A second cluster of grants went to organizations working on communications and getting information out to the public. The Annenberg School for Communications was awarded a grant to improve journalists’ coverage of terrorism; Burness Communications received funding to follow up its work with the Association of State and Territorial Health Officials, the National Association of County and City Health Officials, and the Association of Public Health Laboratories, and raise awareness of the importance of rebuilding the public health infrastructure; the Trust for America’s Health received funds to develop an educational campaign to build support for strengthening the public health system.

Additionally, working through both past and new grantees, the Foundation sought to strengthen the ability of practitioners and public health officials to deal with public health emergencies:

The Foundation continues to make grants to help public health agencies prepare for bioterror emergencies. However, by the middle of 2002, the bioterrorism task force had pretty much dissolved, and its work merged into that of a staff team devoted to improving the health of populations. With a reorganization of the Foundation early in 2003, bioterrorism preparedness had been placed within a staff team whose priority was improving public health leadership and capacity.

September 11th and the anthrax attacks that followed forced the United States to recognize that a strong public health system is vital to national security, and it forced The Robert Wood Johnson Foundation to rethink how it should respond to emergencies. In earlier days, in the aftermath of a natural disaster, the Foundation simply wrote a check to the American Red Cross or some other charitable organization to help with the relief effort. The overwhelming public response to September 11th rendered that kind of approach irrelevant and left the Foundation to work, for the most part, on the margins. The anthrax attacks and what they revealed about the weaknesses in the public health infrastructure gave the Foundation an opportunity to craft a cohesive strategy. As senior program officer Susan Hassmiller said, “September 11th and the anthrax attacks forced us to take a systematic approach to disasters rather than responding on an ad hoc basis as we have done in the past.” While the Foundation has not yet succeeded in developing a strategic way to deal with emergencies, in its efforts to do so, it has been forced to grapple with a number of important issues, such as those discussed in the following paragraphs.

The Robert Wood Johnson Foundation has, since its earliest days, funded demonstration programs with the idea of highlighting a good idea, testing its value, and inducing the federal government to replicate it on a national scale. Terrorism, and particularly bioterrorism, turns this on its head. The massive amount of federal aid dwarfs the resources that any single foundation—indeed, all foundations combined—can contribute. In a real sense, the federal government has preempted the field.

In the cases of both the September 11th and the anthrax attacks, the Foundation’s response was to proceed cautiously as it searched for a role. It waited to see what others would do and looked to fill the gaps. While caution may be appropriate, it bucks a long tradition, dating back to the establishment of a national emergency medical response system in the 1970s, of the Foundation’s taking a leadership role as it collaborated with the federal government on matters of great import to the nation’s health. The Robert Wood Johnson Foundation often helped shape the direction a field took and used its relative flexibility to fund activities the government couldn’t or wouldn’t.²³ In the case of emergency preparation and response, the Foundation did not do this. Nor did it use its stature fully to serve as neutral convener. As the Public Health Informatics Institute’s director David Ross noted, “Public health is, to a great extent, a federal enterprise, with funds being allotted on a disease-by-disease basis. September 11th demonstrated that public health had to act as collective enterprise. Bringing people together would have been an appropriate role for the Foundation to play.”

Perhaps the lesson from this is that there needs to be a rethinking about the role of a foundation in situations where the scope of an emergency, or a potential emergency, is so great and the infusion of federal government resources (or voluntary contributions) is so enormous that it appears at first glance to marginalize the activities of all others.

Balancing Long-Term Strategic Objectives and Short-Term Compassionate Responses
While foundations do not want to be, or even appear to be, hard-hearted in helping victims of hurricanes, earthquakes, or terrorist attacks, they also must recognize that money used for immediate compassionate purposes will not be available to further the long-term goals of the foundation. And they must also recognize that Americans respond generously to the immediacy of a disaster, whereas their compassion and generosity are not so easily triggered by long-run systemic social problems. Considering this issue, former Foundation president Steven Schroeder observed, “We need to retain the flexibility to respond to crises, but we must also remain faithful to our core, long-term interests.”

This argues for a proportionate response to disasters, especially natural disasters, that shows compassion but does not divert too much money from long-range objectives. Donations in the form of grants to the American Red Cross and other charitable organizations to support relief efforts for victims of natural disasters, for example, are appropriate, although the capricious way (one that depends to a great extent on whether a request has come to the attention of a responsive staff member) they have been given in the past is questionable. Rather than making a grant in the wake of a specific hurricane, flood, or earthquake, it might make sense to consider earmarking an annual contribution to the Red Cross (or other charity) that can be used for disaster relief at the agency’s discretion. That way, the Foundation would not have to pick and choose among disasters and the Red Cross (or other organization) would know it can count on a stable source of funds to use in emergencies wherever they occur.

Weighing Broad and Narrow Approaches to Public Health and Public Health Emergencies
In focusing on the next steps, should attention be given to the broader objective of strengthening the public health system as a whole, the narrower objective of strengthening the system’s ability to respond to a biological terror attack, or the medium objective of strengthening the system’s capacity to respond to outbreaks of infectious diseases (whether occurring naturally or intentionally)?
Major federal funding to strengthen the public health system’s ability to respond to a bioterror incident may have an ancillary benefit—strengthening the system’s capacity to identify and address outbreaks of infectious diseases, such as West Nile virus or SARS, not caused by terrorists. It does little to shore up, and is even likely to divert resources from, the public health system’s traditional roles, such as protecting mother-child health, combating chronic illnesses, and providing preventive health services to those in need. As the American Public Health Association noted, “It is also important that funding for bioterrorism preparedness does not supplant resources needed for other important public health activities.”²⁴ Yet this is exactly what is happening.²⁵

To prevent further deterioration of the system, a focus on public health as a whole, while not neglecting bioterrorism, might be appropriate. Whether The Robert Wood Johnson Foundation chooses to focus narrowly on bioterrorism or more broadly on public health, it is in a position to provide intellectual energy and moral direction, as it has in the past, to a field that is being increasingly recognized as critically important to the nation’s well-being.