A Disease with No Cure: Stigmatization and Stratification in the Tuberculosis Resurgence

by Kaylee Lamarche

The Fiscal Crisis of 1975 deteriorated the already lacking medical infrastructure in poor communities. This decline prevented public health officials from controlling the rapid spread of tuberculosis in an effective manner. The resurgence of tuberculosis illuminated the often-disregarded ideology that brute conditions of poverty like poor housing and diet can proliferate disease. Noncompliance became common amongst the disproportionately diseased people experiencing poverty and invasive programs like Directly Observed Therapy (DOT) emerged,  propelling stigmatization. While effectively lowering rates of tuberculosis incidence in the target group, DOT allowed public health officials and policy makers to completely disregard the reason behind noncompliance to drug therapy. As a result, officials ignored the disparities and injustices that caused tuberculosis to affect so many poor people and in doing so made stigmatization and penalization of people experiencing poverty as widespread and prolific as the virus of tuberculosis itself. Treatment became less about acknowledging the larger systemic issue that leads even public health officials to discount the lives of people experiencing poverty, and more about the long-driven rhetoric of protecting society from the deviant behavior of the poor by surveilling and forcefully containing them.

TUBERCULOSIS RESURGED

In the late 19th century and the early 20th century, the first wave of tuberculosis spread rampantly across an unprepared nation. The bacterium causing the disease, Mycobacterium Tuberculosis, was only discovered in 1882 by Robert Koch and no real treatment was found until 1952. When drug therapy for TB began, the focus shifted towards repairing systemic causes of rapid transmission, like overcrowding and poor living conditions. These changes lowered the rates of infection just in time for the Bacille Calmette-Guérin (BCG) vaccine in 1920 and drugs like streptomycin, and Isoniazid,  introduced in 1944 and 1952 respectively. These innovations  reduced the rate of TB in developed countries drastically, leading people to believe that tuberculosis was a problem of the past.^[1] But from the 1970s to 1990s, M. Tuberculosis resurged with strains deadlier than ever, some even resistant to multiple drugs. Tuberculosis returned to propel the nation back into the frenzy of an epidemic.

During the resurgence, standard treatment included a rigorous drug therapy regimen of various medications, including first-line antituberculotic antibiotics like streptomycin and isoniazid, two to three times a week for 6-9 months. While this medley of drugs does provide a long-term cure for 95% of cases, the side-effects are grueling and result in many patients not adhering to the drug therapy regimen after just a few months. ^[2] Patients who go untreated, do not complete the drug regimen, or are prescribed incorrect dosages of medication are likely to develop drug resistant strains. These strains of tuberculosis are just as prolific and communicable as standard TB but much more difficult to treat. As a result, the general population is left much more susceptible to TB’s deadly effects.

 The tuberculosis resurgence was further intensified by the rapid spread of HIV in the late 20th century. Patients with HIV/AIDS have a higher risk of developing the clinical disease and become even more vulnerable to the effects of further illness. Consequently, tuberculosis became common amongst people with HIV and the communities in which they resided. These communities tended to be poor due to the stigmatization and ostracization of people living with HIV. As rates of tuberculosis increased and petered out, so did rates of AIDS. Both tuberculosis and HIV/AIDS became emblematic of poor people, framing the diseases in society as a problem of the poor and only the poor, despite the widespread repercussions the spread of disease has on all people of all socioeconomic status.

It is no surprise that communities experiencing poverty presented higher incidence rates of tuberculosis during the resurgence. Being an airborne, infectious disease, tuberculosis, is transmitted amongst populations living in close proximity, like shelters which tend to be severely  overcrowded. Tuberculosis is much more communicable and widespread in unsanitary environments. People experiencing poverty, especially those experiencing homelessness, are often unable to afford nutritious meals that would help boost their immune systems against disease and tend to live in conditions of poor sanitation because of lack of access.  Both the general public and health officials alike began to view the proliferation of tuberculosis as a corollary of poverty, leading to a strong association between people experiencing poverty and an inability to maintain good health.

THE FISCAL CRISIS OF 1975

In 1975, New York City plummeted into a calamitous fiscal and political crisis in response to failed tax policies and a worldwide recession, leaving the city unable to pay for operating expenses. The mayor during the fiscal crisis, Abraham Beame, was faced with the looming prospect of the city declaring bankruptcy. In a desperate attempt to avoid that, Mayor Beame made requests for public assistance to the federal government after being denied loans from New York City bankers. The treasury secretary, William Simon, urged President Gerald Ford to deny Mayor Beame’s requests for aid because of the political complications, like the punitive terms that would have had to be set before any financial assistance was given and how yielding to Beame’s request could have potentially influenced other cities and states from asking for federal aid.^[3] 

Mayor Beame was also denied because many officials in Washington believed New York City to be a “profligate spender that coddled its poor.”  The deficit became so severe that New York City was unable to borrow money from the federal government, public markets or banks to alleviate the strain of the economic crisis.^[4] In a final attempt to avoid bankruptcy, officials created the Emergency Financial Control Board (EFCB), comprised of a group of businessmen, bankers, and city officials, to balance the city’s budget in a manner that would allow for New York City to qualify to borrow money from the aforementioned sources. The board decided that the only way to limit city and state spending was to impose severe budget cuts to vital programs.

The already terrible conditions of the impoverished were intensified by the extreme budget cuts required by the Emergency Financial Control Board. By 1980, the EFCB had mandated the loss of 468,000 manufacturing jobs and one in five city jobs, including many sanitation and infrastructure positions. This not only eliminated two sources of employment for people in poverty but also worsened the sanitary conditions in the city, resulting in piles and piles of garbage in the streets and deteriorating subway systems. ^[5] Living conditions for low-income residents declined as the federal government withdrew its support from low-income housing in 1982. This worked in conjunction with sky-rocketing rates of displacement and homelessness to create a housing micro-crisis. With job loss and cuts in public benefit, family incomes were significantly reduced as housing rates rose higher than ever. Increased housing costs combined with displacement of a quarter of the city’s population by arson and other fires, gentrification, and landlords abandoning their buildings, resulted in staggering rates of homelessness in New York City. By 1992, 23,494 people were homeless, almost triple the homeless population just ten years prior.^[6] 

New Yorkers experiencing poverty and suffering from tuberculosis were especially impacted by the severe budget cuts. One million city residents suffered greatly when New York State legislature decided to freeze public assistance by reducing the average welfare grant by 50%. In 1982, federal funding for urban development and public health issues like tuberculosis and sexually transmitted infections, like HIV/AIDS, were consolidated into block grants that allowed for state governments to reallocate and shift funds into programs they believed to be more popular politically, depleting the already wavering funds dedicated to improving health conditions for people in poverty. From 1974 to 1977, the Department of Health (DOH) budget was slashed by 20%, resulting in the TB Control Program being cut. This resulted in the closure of district health centers, chest clinics and the only TB specific hospital in the city. ^[7]  The agency that runs municipal hospitals, the Health and Hospitals Corporation (HHC), faced similar budget cuts when the city’s payroll was cut 17% between 1975 and 1978. The HHC was forced to shut down all 50 of its community-based clinics in 1975. By 1980, HHC facilities lost 16% of their beds. Municipal hospitals became the only places where people addicted to drugs, the growing homeless population, HIV positive patients, and the growing number of uninsured patients could receive medical attention.^[8] In response to the extremity and allocation of budget cuts, Doctor John L. Hollman Jr., M.D., president of New York City’s Health and Hospital Corporations from 1974 to 1976, stated that the EFCB was “trying to balance the budget on the backs of the poor,” highlighting that monumental impact these budget cuts would have on communities that were already facing severe disparities. ^[9] 

Tuberculosis incidence rates continued to climb in New York City, yet funding for tuberculosis decreased disproportionately. In 1967 there were 4,000 reported cases of tuberculosis with 1,000 beds in municipal hospitals specifically designated for tuberculosis patients but by 1992 there were fewer than five beds. Similarly, the 22 full-time chest clinics that existed in 1968 dwindled to only nine by 1992. These nine clinics were extremely run-down and had overcrowded waiting rooms, further promoting the spread of disease. Harlem had incidence rates of tuberculosis twenty times the national average and five time higher than the New York City average, with tuberculosis affecting every 220 people per 100,000. ^[10]

MULTI-DRUG RESISTANT TUBERCULOSIS & DIRECTLY OBSERVED THERAPY

As already poor living conditions worsened, the Fiscal Crisis of 1975 made Directly Observed Therapy necessary. The crisis created an environment in which people experiencing poverty were so disempowered and disadvantaged that they were viewed as incapable of adequately caring for themselves and many public health officials failed to consider poverty as a lack of material wealth, education, and access to resources, specifically medical resources. Multi-Drug Resistant strains of tuberculosis became rampant as conditions worsened in impoverished communities and preventive-medicine clinics became increasingly sparse in areas of need. With the few existing chest clinics overcrowded and Medicaid coverage slashed, poor people lacked the access to the medical attention necessary to treat and cure their tuberculosis before it could spread or become multi-drug resistant. Overcrowding in clinics resulted in doctors inability to thoroughly keep track of their patients. Some patients were given inadequate drug therapy regimens by their doctors which caused them to develop drug-resistant strains even though they were compliant to treatment. If able to access treatment, most patients discontinued drug therapy after two of the required six months because as the symptoms of tuberculosis subsided, grueling side-effects surfaced. Over 25% of tuberculosis patients in New York City presented cases of drug resistance.^[11] Dr. Lee B. Reichman, president of the American Lung Association in 1992, responded to rising drug-resistant strains of tuberculosis stating, “we have turned a disease that was completely preventable and curable into one that is neither”.^[12] 

In 1979, New York City received $75, 000 from the federal government to test a program meant to decrease the rapid spread of tuberculosis.^[13] This program, formally known as Directly Observed Therapy, or DOT, required patients to come in to medical offices and be observed taking their medication. Many of these offices were often located far from patient’s homes and workplaces. Patient’s only other option was to open their doors to public health officials that ensured they were taking their medication accordingly. Directly Observed Therapy sessions were held three times a week, on average. During the federally funded trial run, this method of surveillance yielded the intended results and tuberculosis incidence rates dropped.  95% of patients completed their antibiotic therapy and were cured in 1979.^[14] But funding quickly disappeared, and the program was shut down temporarily. By the time New York City decided to fund DOT programs again in 1992, the cost had risen to over six million dollars a year, compared to the seventy-five thousand dollars in the years prior.^[15] 

Public health officials and policy makers had  questionable intentions throughout the tuberculosis resurgence. Before the new strains of tuberculosis could spread, policy makers were willing to jeopardize poor people’s access to preventative care by centralizing the budget cuts brought on by the fiscal crisis on programs designed specifically to aid the poor, like the HHC. Dr. Barry R. Bloom, a senior researcher at the Albert Einstein College of Medicine and a TB specialist, stated that “we had everything we needed. All the knowledge, the skills, the medical expertise necessary to eliminate this disease. Instead, this country chose to very nearly eliminate the health-care programs people with the disease need most.”^[16] Despite this, poor people are still blamed for their destitution and their poor health conditions are viewed as byproducts of their own neglect, not the neglect of officials who deprioritize them when making fiscal decisions. Specifically, within the tuberculosis epidemic, people experiencing poverty are penalized and criminalized for being unable to care for themselves properly, despite not having the adequate resources to do so. Public Health officials then responded by implementing programs like Directly Observed Therapy where poor people were disempowered and subjected to a panoptic surveillance system of behavioral correction and scrutiny, without addressing the more pressing systemic factors that predetermine poor health conditioned in people of low socioeconomic status. DOT set the precedent that people experiencing poverty are incapable of acting in their best interest, or careless enough to forgo treatment at the expense of those around them, including the wealthy, and must be constantly surveilled to ensure that they’re behaving accordingly. Treatment of tuberculosis then became a matter of protecting the rich, from the diseases carried by the poor by administering treatment through the invasive system of DOT.

In 1993, just one year after DOT was formally adopted, New York City implemented Section 11.47 of the City’s Health Code, which states that an individual may be confined if they are suspected of being unreliable to complete treatment.^[17] Not only does this regulation criminalize noncompliance amongst people experiencing poverty disproportionately, it also encourages further stigmatization of poverty. Similar to DOT, Forced quarantine further implicates people experiencing poverty in their own illness, despite the systematic disparities that cause poor health conditions, and restrict impoverished people’s autonomy.  Further, containment exacerbates the vicious cycle of poverty. For example, a poor person can contract a disease because of lack of access to preventative care; then the disease worsens because he or she is are unable to access treatment and complete it successfully. Eventually the person experiencing poverty is quarantined for being contagious and posing a risk to society. Time spent in quarantine renders the person unable to go to work and provide for him or herself once released from containment.

 The tuberculosis resurgence is just one example of how poor people are held culpable for conditions that are out of their control. The response by public health and policy officials recognized tuberculosis as a social problem but misplaced the blame for its proliferation on the perceived incompetence of poor people. Already suffering the calamitous effects of the fiscal crisis, people experiencing poverty became victims of a disease that became socially identified as a self-inflicted peril. This case highlights how people experiencing poverty are expected to be comfortable with being acted upon by officials in power, while also paying, often greatly, for the mistakes of public policy officials. The tuberculosis resurgence highlights the steep cost of being poor and the socially assigned position people experiencing poverty occupy,  the scapegoats for poor public policy. 

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