The Old Remedy

By Heather Vogell

In April of 1998, Alonzo Massie walked into a New York City hospital in search of medical care. For more than two years, he had fought tuberculosis. At that moment, it looked like the disease was winning.

For days, his body temperature had been simmering above 100 degrees. An infected lymph node under his arm had grown so painfully swollen that he had drained it himself. He was struggling to stay faithful to a treatment regimen that included six medications and an injection, but nothing seemed to be helping. He expected the hospital to admit him.

Instead, he was told to report to the registration office - a directive that struck him as odd. When he got there, a health care worker trained to administer TB medications, whom Massie had met before, told him why. He was being confined to a hospital because he posed a threat to the public health. The city was sending him to an isolation room at Bellevue Memorial Hospital, and then to the Color-Goldwater Memorial Hospital, on Roosevelt Island, for treatment. He could not leave until he had recovered completely.

Alonzo Massie was kept confined and under guard for the next two years.

Massie's confinement was not unique. In the past seven years, about 250

The three most active detention programs outside of New York are in Massachusetts (where there were 166 patients from 1990 to 1965), Denver (20 patients from 1984 to 1994) and California (67 patents in 1994 and 1995), according to Dr. Barron Lerner, who write about confinement in a 1999 article in the medical journal Chest, which also cites the 250 in New York.

people with TB have been locked up in hospitals in New York, the nation's most active detention program. Hundreds more patients received such treatment in other cities throughout the nation.

In a better world, this would not have happened. Though it is these patients who have been blamed for their failure to take their medicines, the real responsibility lies elsewhere-with the medicines themselves.

THE INCARCERATED ILL

Keeping ill people isolated and confined - quarantined -- is nothing new. It is a practice that goes back to Biblical times. In the nineteenth century, "sanitary conferences" that were convened to devise a standard quarantine policy throughout the world eventually led to the creation of the forerunner of the World Health Organization.

In New York in the beginning of the twentieth century, a woman named Mary Mallon, while working as a cook, infected more than 50 people, and caused three deaths, as a carrier of typhoid fever. City health authorities tried for more than a decade to make her promise not to work in restaurants, but finally apprehended and confined her for the last 23 years of her life. She is known to this day as Typhoid Mary.

New York City was also the first municipality to segregate people with tuberculosis. In 1903, the city opened a detention facility at Riverside Hospital designed for TB patients who resisted regulations to stem the spread of the disease, but it quickly became a dumping ground for immigrants, vagrants and alcoholics. In the 1950s and 1960s, with the development of antibiotics, a cure to such long-standing illnesses like tuberculosis seemed at hand. Either despite or because of that, cities became more aggressive in detaining patients during treatment of TB. More than 30 states employed compulsory hospitalization.

Their efforts paid off. Tuberculosis declined in the 1970s and 1980s, and so did the use of detention.

But in the past decade, there was a sudden resurgence of the disease, most noticeably among AIDS patients with weak immune systems.

And when cases began rising again, cities again turned to confinement as one solution for uncooperative patients.

AN ISSUE OF PUBLIC HEALTH, NOT CIVIL LIBERTIES

Seven years ago, in 1993, New York City once again passed regulations giving the Department of Health the power to confine people who had chronically missed doses of medicine or repeatedly showed up in emergency rooms contagious. Tuberculosis is spread easily through the air.

People like Alonzo Massie who took their medicines erratically were developing a resistance to the drug, and thus carried a more lethal strain of the disease that could be spread directly to others. With New York leading the nation in TB cases, the Health Department said monitoring patients closely was necessary to prevent a more widespread and deadly outbreak.

No criminal charges are filed against sufferers, but they have to go to court if they want to fight the health order. A judge reviews their confinement after 60 days and then every 90 days during treatment.

When the health department first proposed expanding its authority over tuberculosis patients, some thought it was unfair to detain people who could not adhere to treatment because of other social ills, like homelessness, alcoholism, and drug addiction, according to an article and accompanying editorial in The New England Journal of Medicine. Civil liberties groups and advocacy organizations for AIDS patients backed legal challenges to the regulations, but their arguments were rejected by the courts.

In the years since the program started, the number of TB cases has dropped significantly, in part because of the city and federal government's aggressive anti-TB efforts. (Between 1992 and 1998, TB cases declined 59 percent, and the deadly multi-drug resistant cases declined by over 90 percent). New York Civil Liberties Union representatives stopped visiting the detention center at Goldwater.

The center, which now has some empty beds, became an established part of the health department's tuberculosis control program. Like the sanatoriums of yesterday, it was accepted as a necessary, hopefully temporary, curtailment of freedom.

Few people seem to express any outrage over the fact that detention centers would be unnecessary if tuberculosis medicines were improved.

BAD MEDICINE

Unlike AIDS medicines and anti-depressants, which have been made easier to take and more effective thanks to extensive drug company research and development, TB drugs have changed little since they were introduced decades ago. The medicines still take up to 18 months or more to work, and they must be taken without interruption.

Researchers like Dr. Clifton E. Barry III at the National Institute For Allergy And Infectious Disease, deem these medicines mediocre at best. A drug could be developed, these researchers say, that would require a treatment regimen as short as two weeks.

But such a drug has not been developed because of the failure of the pharmaceutical industry, and also the federal government, to pay adequate attention to a disease that has haunted the world's population for centuries. Tuberculosis patients are thus punished for their condition in ways that victims of other illnesses--even contagious ones--are not.

Pharmaceutical companies that traditionally financed drug development have shied away from tuberculosis, said Dr. William R. Jacobs Jr., a tuberculosis researcher at Albert Einstein College of Medicine. "Companies don't care about TB because they don't see a market in the U.S. that's big enough," Jacobs said. "It's much more palatable for them to develop a Viagra than it is for them to develop a TB drug." And, the market abroad is dismissed because it is mainly in poor countries with unreliable means of delivering a new medicine.

Since the early 1990s, the United States government has taken a more keen interest in the disease, but experts said funding is still inadequate. Dr. Morton N. Swartz, the chairman of the Institute of Medicine's tuberculosis committee, in May called on the federal government to triple expenditures on TB research to $280 million per year.

Cities like New York that are especially hard-hit by tuberculosis would be wise to call for the same. A generation has already passed with little research into improving drugs, and another decade will likely elapse before research yields medicines that could make wards like the one in Goldwater Hospital a part of history once again.

A PATIENT, NOT A PRISONER

Alonzo Massie's two-year stay at the non-infectious secured TB unit at Goldwater might sound more like time spent at an upscale health spa than a prison. The patients receive total health make-overs. Besides regular visits from the doctor who oversees their treatment for TB, they see dermatologists and dentists, counselors and hair-dressers. Little is expected of them except that they obey common sense rules for safely sharing a ward with a dozen or so other sick people.

Yet there is no escaping the ward's coercive mission. The center at Goldwater does not have bars or metal detectors, but a security guard watches the exit and common areas 24 hours a day. A balcony offers limited access to the outdoors.

Some of the patients might be used to such treatment-at one time or another, they were in real prisons. "It's a marginalized, disenchanted group of people we have here," said Laurie Nathan, the TB detention center's coordinator

Despite group activities, classes and exercise equipment, patients complain mostly of boredom. Most watch television during their waking hours. Several times a day, a nurse wheels a cart from room to room and watches attentively as patients swallow pills or drink tiny cups of liquid medicine.

If there are just about a third of the number of TB cases in the city as when the detention center began, "the need for our unit persists," Nathan said. "Every once in a while, our cases will drop and they (start) talking about eliminating it." But, she said, there will always be an underlying group of people who neglect their medicines and "just can't do it on their own."

On the night of April 12 this year, Massie dreamed of a friend he hadn't seen in a long time. He slept unusually well and by 9 a.m., he was awake and dressed in a pair of blue jeans. Two years and one week had passed since he last wore street clothes with the intention of going out into the street.

He joked with the nurses and retrieved a speaker he had lent to a fellow patient. He promised another patient who was crying that he would call her after he left.

For the first time, he was on AIDS medications, which he said he would take religiously so that disease would not develop resistance to them the way his tuberculosis did. He was hopeful about his future.

Doctors first claimed they had vanquished tuberculosis more than 50 years before. But for Massie, victory came one quiet spring morning in the year of 2000, when he swallowed his last tuberculosis pills and walked out of Goldwater Hospital.

Heather Vogell, a recent graduate of the Columbia University Graduate School of Journalism, now works for the Chicago Tribune

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