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Tuberculosis (TB), consumption, the “White Plague,” Mycobacterium
tuberculosis, phthisis, tubercle bacillus, pulmonary TB, active TB, latent TB
(Rosenkrantz 1994). Regardless of the name it has been given, TB has been a scientific
conundrum, a cultural icon, and a complex societal problem during its long history. Most
diseases cannot compare to the devastating effects TB has had on the human race.
Egyptian mummies dating back to 2400 B.C. have been found with signs of TB (NJMS
National Tuberculosis Center 1996); and the disease continues today, with 1/3 of the
world’s population infected with some form of TB and two million people dying each
year from the disease (CDC 2000:1). “Consumption” is written on the death certificates
of such famous people as Edgar Allan Poe, Cicero, Mozart, Eleanor Roosevelt (StopTB
2005), and has been portrayed on stage in Puccini’s La Boheme and Verdi’s La Traviata
(Timebomb 2002:18). The enduring presence of TB does not mean that breakthroughs in
controlling and fighting the disease have not been made. However, these breakthroughs
have significantly impacted human populations, both culturally and socially.
The Science of TB
Two forms of TB exist, disease and infection (For a List of Terms, Refer to
Appendix A). Most Americans are familiar with active pulmonary tuberculosis disease,
which can be passed on by an infected person coughing, singing, or even talking. There
are other forms of active tuberculosis, referred to as extrapulmonary tuberculosis,
including TB of the eye and the brain. TB infection (also known as latent TB or LTBI), in
contrast, is when a person has TB, but is not infectious. When a person inhales
Mycobacterium tuberculosis, the bacilli reach the lungs. At this point the immune system
does one of two things: it contains the bacilli, not allowing them to multiply - LTBI; or, if
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the immune system is suppressed, the bacilli will multiply - active TB. Some of the
bacilli may also enter the bloodstream and travel to other parts of the body, thus causing
extrapulmonary TB. The symptoms of active TB include a persistent cough, chest pain,
hemoptysis (coughing up blood), weakness, weight loss, chills, fever, and possibly death
(CDC 2000:40). There is a 10% chance of someone developing active TB from latent TB,
unless the immune system is suppressed, in which case the chance of developing active
TB is much greater (CDC 2000:7).
In the United States, the most widely used diagnostic tool is the PPD skin test.
The diagnostic test involves a health care professional injecting liquid (tuberculin) “into
the inner surface of the forearm” (CDC 2000:29). Within 48 to 72 hours, a health care
professional will measure the diameter of the induration (bump) to see if the patient has
TB. Classifying the reaction is subjective because different groups of people are
classified as positive with a smaller bump than other groups. For example, a person with
HIV/AIDS will be diagnosed as positive for TB with a smaller bump than those that do
not have HIV/AIDS. But usually, the larger the bump, the more likely the person has TB
(CDC 2000:29-31). If a person tests positive for TB, a chest x-ray will be done to see
whether it is active pulmonary TB. If the chest x-ray is negative, then the person is
diagnosed with LTBI. Further diagnostic tests may be done, such as a bacterial sputum
smear, to further test whether the patient has TB (CDC 2000:41-45).
Treatment for active TB in the US involves taking the first line regimen of drugs isoniazid (INH), rifampin, pyrazinamide, and either ethambutol or streptomycin for six to
nine months (the drug treatment is also referred to as chemotherapy) (CDC 2000:69).
Because of the long treatment, Directly Observed Therapy (DOT) strategy is used to
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ensure that patients take their medications. The DOT strategy includes a public health
worker meeting a patient and watching the patient take the drugs (Refer to Figure 1)
(CDC 2000:67-8). If a patient is resistant to drugs, specifically INH or rifampin, the
patient is considered to have multidrug resistant TB (MDRTB). The TB bacilli can
become resistant if the patient is infected by the MDR bacilli, or improperly or misses
doses of the active TB treatment (CDC 2000:9).
Taking INH for nine months can also reduce the chances of progressing to active
TB from latent TB, but the preventative medicine is not mandatory (CDC 2000:59).
Patients who take the preventative medicine for 12 months reduce the risk of developing
active TB by more than 90%, and patients taking the medicine for six months reduce their
chance by 70% (CDC 2000:55). However, INH may have the possible side effects of
INH including: loss of appetite, rash, vomiting, abdominal pain, dizziness, easy bruising,
hearing loss, and a 3-5% chance of developing liver toxicity (CDC 2002:8)
PPD Skin Test
Negative
Positive
Patient does
not have TB
Chest X-Ray
Positive for
Pulmonary
Active TB
Negative;
Diagnosed as
Latent TB
Given under DOT Therapy
isoniazid (INH), rifampin,
pyrazinamide, and either
ethambutol or streptomycin
No DOT therapy
INH given
Figure 1. Diagnosis and treatment of TB patients
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TB Socially and Culturally in the United States
Today, in the United States, TB seems to be a disease of the past. The incidence
rate in the US in 2003 was 5.1 cases/100,000 (CDC 2004b), while in 1854, consumption
was the “great destroyer of human in life in Massachusetts,” killing one in every 50
people (Massachusetts 1854:10-11). These high death rates had implications for social
life. It was common for a close relative or friend to die from TB, whereas today it is rare
for anyone to have TB, let alone die from it. Because of these devastatingly high death
rates during the 1800s, any cure to the disease was considered. In 1854, when the botanist
Hermann Brehmer was instructed to seek a healthier climate to help his TB, he went to
the Himalayan Mountains - and was cured. He believed the clean air and relaxed lifestyle
he found in the mountains was responsible for his recovery. He would later publish his
findings and begin an institution in Gorbersdorf, Germany, for TB patients, thus
beginning the sanatorium era (NJMS National Tuberculosis Center 1996).
Edward Livingston Trudeau introduced sanatoriums in the US around Saranac
Lake in upstate New York in the late 1880s (Trudeau 1928:419). Sanatoriums were
looked upon as useful because they isolated the TB patient and provided fresh air instead
of the dirty, infected air found in cities. Furthermore, doctors and nurses were there to
regulate meals, sleeping patterns, and physical health (Bates 1992:75-94). Because of the
sanatorium’s resort-like quality, they became appealing for those living in the city.
From the late 1800s to the early 1900s, many artists and poets - Stephan Crane,
Emily Brontë, Paul Laurence Dunbar, and Frédéric Chopin – died from TB (StopTB
2005), and it was considered “fashionable” to die from TB. In movies and literature,
tuberculosis was portrayed as a romantic, artistic way to die. In fact, sanatoriums became
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a “get-away” for patients to relax and meet new people (The People’s Plague 1995). But
after World War II, chemotherapy began to cure people. As a result, the rate of people
dying from TB, famous and not, decreased. Sanatoriums began to shut down, and the
image of TB changed from being a disease of the famous to a disease of the poor (NJMS
National Tuberculosis Center 1996).
TB and the History of Immigration
Although tuberculosis has been around since at least 2400 B.C., the incidence of
the disease did not peak until the industrial revolution and its accompanying urbanization
and high population density, which when combined with cramped living quarters and
unsanitary conditions, created the perfect conditions for TB to spread. In the United
Kingdom during the mid-1700s - the beginning of urbanization - one in four people were
dying from TB (Davies 1997:68). As people from the industrialized European countries
migrated to other parts of the world, including the United States and South America, TB
followed the immigrants. Again, the industrial revolution created the same environment
in the US as it did in the UK: urbanization, high-density population, and poor living
conditions, all of which propelled the spread of TB.
Philadelphia is a good example of the impact that immigration and urbanization
had on the spread of TB. In 1870, Philadelphia’s population was 674,000 and growing.
By 1900, the city’s population was 1,293,000, of which about one fourth were
immigrants. Philadelphia attracted immigrants because it was a large industrial center for
textiles, clothing, shoes, lumber, construction, and printing (Bates 1992:42). Around the
1870s, the annual mortality rate per 100,000 from TB for Philadelphia was >350/100,000
(Dubos 1987:231)
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After 1870, though, the incidence of TB began to decrease dramatically because
of public health measures. Doctors and nurses realized that because many immigrants
could not go to a sanatorium, the sanatorium would have to come to them. Nurses,
especially, began going into “consumptive’s” homes, educating them about TB. Nurses
taught patients to open windows for ventilation, isolate family members with TB, and
adopt healthy eating habits (Bates 1992:239). These nurses faced challenges of gaining
rapport with immigrants, teaching non-English speakers, and understanding superstitions
about the disease. The nurses usually helped the immigrants that were the least
accustomed to American ways because these were the immigrants most susceptible to TB
(Bates 1992:237). TB rates began to decrease from the effort of the nurses, nationwide
public health measures, and the social factor of immigrants moving out of cities (Dubos
1987:200).
As the rates of TB in the United States and the United Kingdom began to
decrease, rates began to increase in other parts of world. The parts of the world that
Europeans traveled to during Europe’s expansion and industrial revolution, now had to
fight increasing rates of TB. For instance, northern Africa, parts of South America, and
India, which did not have TB until the European settled in those areas, now experience
high incidence rates of TB in 2003: 50-100/100,000; 10-50/100,000; and 100300/100,000, respectively (WHO 2004b). Ironically, as people from these and other
countries immigrated into the United States or Europe, they brought TB, infecting the
countries that had originally given them the disease (Davies 1997:75).
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TB Today
Because TB is still looked upon as a disease of the poor and immigrants, at least
in the United States, it does not receive much attention from the US government or the
media. After public health measures and the discovery of chemotherapy, rates of TB
decreased by an average of 5.6% per year from 1953 to 1984 (See Figure 2).
Figure 2. Reported TB Cases in the United States between 1953-1998 (CDC 2004d).
The steady decrease gave reason for the US government to pull funds from TB programs.
Unfortunately, the number of cases began to increase in 1985, with the rise of the
HIV/AIDS epidemic, MDRTB, high rates of immigration into the United States from
countries with a high TB burden, and the transmission of TB in hospitals, homeless
shelters, and prisons. From 1985 to 1992, TB incidence in the US increased by 20%
(CDC 2000:16). The US was in a TB epidemic, even though the US had the resources to
suppress the epidemic. An epidemic is defined as “the occurrence in a community or
geographic area of a disease at a rate that clearly exceeds the normally expected rate”
(Schneider 2000:473). In 1953, the case rates for tuberculosis was 52.6 cases/100,000; in
1985, there were 9.3 cases/100,000; and by 1992, the peak of the epidemic, the case rate
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was 10.5 cases/100,000 (CDC 2004b). However, by the end of the 1990s, the United
States combined public health, social factors, and chemotherapy into the DOT program to
curb the epidemic (CDC 2000:16).
In 1989, the Center of Disease Control and Prevention (CDC) projected that TB
could be eliminated in the United States by 2010. “Eliminating” TB means 1/1,000,000
persons, while “eradication,” means zero cases of active TB (CDC 2001). But as of 2003,
the incidence of TB in the United States was 5,100/1,000,000 (CDC 2004b). According
to Dr. Lee Reichman, the executive director of the New Jersey Medical School National
TB Center, in order to eliminate TB, the United States will have to combat increasing
numbers of TB cases in foreign-born citizens. In 1986, 22% of the TB cases in the US
were foreign-born, but in 2003, 53.1% of the US TB cases were foreign-born (CDC
2004c) (See Figure 3). In Pennsylvania, TB incidence decreased from 448 cases in 1998
to 336 in 2003, a 25% decrease. The incidence of TB among foreign-born persons,
however, rose from over 100 cases in 1993 to over 125 in 2002 (PA Dept. of Health
2003, 2004). In Lancaster County, as of the end of November 2004, there were three
cases of active TB, all of whom were foreign-born.
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Figure 3. Reported Cases of TB by Country of Birth in the
United States between 1986-1998 (CDC 2004d).
In 1993, the World Health Organization (WHO) (2003) declared TB to be a
global emergency. Although TB in the United States is basically hushed and kept unseen
from the common American, TB is one of the top two major killers in the world (next to
HIV/AIDS). In Eastern Europe, specifically, cases of TB and MDRTB are increasing.
According to the WHO Report for Global Tuberculosis Control (2003), Russia is one of
the 22 high-burden countries because of its high rates of TB and MDRTB. Cases of TB
more than doubled in Eastern European countries between 1990-2001 (WHO 2003).
Furthermore, WHO found that the percentage of newly diagnosed active TB cases could
be as high as 14% in the countries of Estonia, Kazakhstan, Latvia, Lithuania, parts of the
Russian Federation, and Uzbekistan (WHO 2004).
TB and Immigrantion
Each immigrant entering the United States is given a classification based on
health. Persons with active tuberculosis are classified as a Class A immigrant, which
means they are denied immigration into the United States (Fairchild 2003). A chest x-ray
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taken within a year of immigration shows whether the person has active TB. However,
“clean” x-rays can be purchased on the black market, allowing persons with active
pulmonary TB to enter the US illegally. Furthermore, persons with active extrapulmonary TB and persons with LTBI are considered Class B1 and Class B2 immigrants,
respectively, and allowed to enter the United States. However, all Class B immigrants
need to have further medical check-ups by the state health center within the first month of
arriving to the U.S (CDC 2004a).
The Roles of Anthropology and Social Science in TB
As public health workers began treating foreign-born cases, they began
discovering cultural barriers between the American view of the preventative medicine
and the view of the immigrants. Many of the foreign-born immigrants with LTBI often
opted not to take the preventative medicine to prevent (Coreil 2004:67; Ito 1999:1;
Shrestha-Kuwahara 2004:531). Federal organizations, such as the CDC and the National
Institutes of Health (NIH), began investigating why foreign-born patients with LTBI did
not take the medicine. Anthropologists and social scientists stepped in to interview and
participate observe immigrants and public health workers.
This paper will explore the cross-cultural issues in treating Eastern European
immigrants into Lancaster County with LTBI. Two sets of immigrant groups in Lancaster
County are presented. Pentecostal Eastern Europeans, many of whom decide not to take
the preventative medicine, and Meskhetian Turks, many of whom do take the
preventative medicine. I present past research to set a basis of knowledge to prepare for
the following sections that provide ethnographic information about each immigrant
group. The following section is a discussion of the ethnographic work and themes related
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to past research and each immigrant group. Lastly, some conclusions are made on how
this research can aid the fight against TB. This research stems from the basic belief that
the US can better treat patients with LTBI if the US understands the cultural background
of the immigrants (Rust 2000:4).
Methods
Dr. Dick Fluck introduced me to Laura Stammberger, who worked at PRIMEECR in Lancaster, Pennsylvania (PA). PRIME-ECR is an ecumenical, non-profit refugee
settlement and immigration assistance. It was founded in 1983 by the Presbyterian
Church (U.S.A.) in Clifton Heights, PA (Institute 2002). She usually had business to
discuss with the immigrants, and I accompanied her in case there was time to interview
the immigrants. She introduced me to six Pentecostal Eastern Europeans during October
2003 (See Table 1) and six Meskhetian Turks during January 2005 (See Table 2).
Table 1. Table of Pentecostal Eastern Europeans Immigrants Interviewed.
Name
Michael
Irna
Vladimir
John
Age
late 40s
late 40s
early 20s
mid 40s
Country
of
Origin
Ukraine
Ukraine
Ukraine
Ukraine
Sergie
mid 30s
Russia
Ephrata
7 months
no
Natalia early 30s
Alexander early 20s
Russia
Russia
Ephrata
Student
7 months
3.5 years
no
student
US
Time in US at
Residence Interview
Sponsor
Ephrata
4 months
yes
Ephrata
4 months
yes
Ephrata
1.5 years
yes
Ephrata
6 months
yes
Postive
Reason for Previous Occupation BCG
Skin TreatLeaving Occupation
in US
Vaccine Test ment
yes
no
economic
N/A
none
yes
yes
economic
N/A
none
no
yes
no
economic
N/A
factory
yes
yes
economic
driver
welder
no
Theology
yes
yes
economic
student
none
no
Theology
yes
no
economic
student
none
yes
yes
student
student
student
no
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Table 2. Table of Meskhetian Turks Immigrants Interviewed. (N/A means I did not
receive answer)
Country
of
Origin
US
Residence
Time in
US at
Interview
Sponsor
Reason
for
Leaving
Previous
Occupation
Occupation
in US
BCG
Vaccine
Positive
Skin
Test
Treatment
Housewife,
gardener
Construction
worker
Director
of
company
N/A
yes
Yes
No
N/A
yes
No
-
yes
yes
yes
N/A
Works
in
Warehouse
N/A
yes
yes
Yes
N/A
N/A
yes
yes
N/A
N/A
N/A
N/A
N/A
N/A
Name
Age
Lina
Earl
y
30s
Earl
y
30s
mid40s
Russia
Lancaster
1 Month
yes
Persecution
Russia
Lancaster
1 Month
yes
Persecution
Russia
Lancaster
6 months
yes
Persecution
Mid40s
Mid40s
76
Russia
Lancaster
6 months
yes
Russia
Philadelphia
Lancaster
2 months
yes
>6
months
yes
Persecu
-tion
Persecu
-tion
Persecut
-ion
Paviol
Andre
Irna
Matthew
Andre’s
mother
Russia
Before interviewing the Pentecostal Eastern Europeans and Meskhetian Turks, I prepared
a set of questions (See Appendix B), but those questions were only starting points and
subject areas. The questions were slightly different for each immigrant group because of
the time difference between interviews. For each interview, I tried for an open-ended
interview, in which I asked one or two objective questions from the list and then
continued the interview based on the interviewee’s responses.
All the informants were interviewed in their homes or in a home they were
visiting. I used audio tape recording for the first interviews with the Pentecostal Eastern
Europeans, but because of the odd locations of taking field notes (such as in person’s
homes or riding in a car), I decided to write all my field notes. Laura interpreted most of
the conversations, which were primarily in Russian. Even those who immigrated from
Ukraine spoke Russian. Most of the immigrants were in English classes, but their English
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was broken. Furthermore, I thought it best to conduct the interview in Russian because I
wanted my informants to feel comfortable when talking about TB and their health.
In the fall of 2003 and fall of 2004, I was also interviewed public health workers
and a pulmonologist in Lancaster County, which brought an additional perspective to
treating Eastern Europeans in Lancaster County (See Table 3). Dr. Fluck introduced me
to the Lancaster County public health nurse in the Fall of 2003, and with her help and my
own research, I was able to interview not only her but also three additional public health
nurses and the pulmonologist, who works with the Eastern European immigrants, in the
Fall of 2004.
Table 3. Table of Public Health Workers Interviewed.
Name
Gender
Occupation
Previous
Contact
How
Where
When
A
F
PRIME-ECR
yes
Paper, pencil;
phone
Her car; my house
10/27; 10/29
E
F
Post-public TB
nurse
yes
phone
My house
11/4/04
F
F
Public TB nurse
no
Paper and pencil
PA State Health Dept.
11/23
G
M
pulmonologist
no
Paper and pencil
His office
11/10
H
M
doctor
yes/no
Paper and pencil
TB Freshman Seminar
11/11
J
F
State Manager
no
phone
My house
11/19
L
F
Public TB nurse
no
phone
My house
11/29
I take an informant’s privacy seriously. Before entering the field, I read the
appropriate sections of the Statement of Ethics of the American Anthropological
Association and conducted my research in accordance with the principles and guidelines
contained in that statement. This project was also approved by the Institutional Review
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Board at Franklin&Marshall College. Before each interview, I explained to the informant
that he/she could stop the interview at any time or not answer a question. Furthermore,
pseudonyms are used for all the informants for confidentiality.
Background Research
Biomedicine and Its Alternatives
Biomedicine has a critical role in treating LTBI, especially in immigrants who
believe in traditional or non-Western ways of healing. Alison Gray (1996:23-24), an
anthropologist at McMaster University, describes biomedicine as,
“an explanatory model and system of treatments and perceptions of disease from a
certain standpoint, that of Western society. Biomedical research is often thought
of as objective, scientific and, for the most part, ‘right,’ by those who practice and
are treated by it; it is ‘fact,’ and ‘reality.’ Biomedical practice focuses on the
prevention and cure of illnesses of the body, and as such does not tend to explore
the social context within which diseases occur. Disease treatment is grounded in
scientific research for appropriate therapies and vaccines. Diseases are understood
to be based on the malfunctioning of the biological and physiological processes,
and as such are seen to be problems of the body. They are also seen to be
problems of individuals, for the most part, rather than of groups of persons in
certain social positions. Biomedicine focuses on a curative orientation, eradication
of the pathogen, and on control strategies. Its practitioners discuss the risks and
health factors associated with the disease patterns….”
Patients diagnosed with LTBI are asked whether they want to be put on the preventative
drug, isoniazid (INH), for nine months. As stated previously, the preventative medicine is
not mandatory. Immigrants do not rely primarily on their traditional methods of medicine
but use both biomedicine and traditional methods to treat their TB (Coreil 2004:65;
Houston 2002:261; Ito 1999:10-11; Shrestha-Kuwahara 2004:532; Yamada 1999:480).
There are different ways biomedicine and traditional medicines overlap. One
relationship between biomedicine and traditional medicine is the manner of handling the
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side effects from the preventative medicine. As stated previously, some of the side effects
of INH include loss of appetite, rash, vomiting, yellowish skin or eyes, abdominal pain,
dizziness, easy bruising, hearing loss, and a 3-5% chance of developing liver toxicity
(CDC 2000). Many immigrants take the INH but then use traditional forms of healing to
relieve INH’s side effects. For example, Vietnamese immigrants eat fruits and vegetables
to counteract the side effects of INH (Ito 1999:10).
A second relationship is that immigrants believe that biomedicine treats the
biological causes of the disease, while traditional medicine explains and treats the
spiritual and psychological causes of TB (Shrestha-Kuwahara 2004:532). Some
immigrant populations divide TB into psychological and physical causes and treatments.
For example, Vietnamese immigrants to the United States believe that TB is caused by an
imbalance between the mental and physical aspects of their body. They listed symptoms
of the “psychological” tuberculosis as fatigue, gaunt appearance, loss of appetite, and
persistent cough. The treatment for the “psychological” tuberculosis was reducing
worries and anxiety, regaining mental stability, eating regularly, and changing diet. The
symptoms of the physical tuberculosis described by Vietnamese were exhaustion, gaunt
appearance, persistent cough, and night sweats. The way to cure the physical symptoms
was to take INH, maintain proper hygiene, reduce worries, and avoid contact with others
(Houston 2002:262-263).
Research found that cultural barriers to immigrants taking INH were based on
different factors, which can be grouped into three categories: misunderstanding about
INH treatment, the location and employees at the public health center, and stigmatization.
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A major source of misunderstanding to treating immigrants is the BCG vaccine.
The BCG vaccine, currently the only vaccine for tuberculosis, is promoted by WHO as a
way to fight TB. However, there is debate over the vaccine’s effectiveness and the
vaccine’s interference with the PPD diagnostic test, which is why the US does not
recognize the vaccine as a useful way to fight TB. The BCG vaccine has been shown to
have a protective efficacy of >80% for children against serious forms of TB. However,
for adolescents and adults, research has shown the protective efficacy can be anywhere
from zero to 80%. Additionally, the BCG vaccine can cause false positives on PPD tests
(the test indicates that a person has TB, even though the person does not) (NIAID 1999).
Another factor that needs to be taken into consideration is boosting. Some people test
negative during the PPD test, although they have LTBI because their sensitivity to the
tuberculin declines over time. The patient’s first PPD test may be negative, but after two
one to three weeks, the test may be positive. The public health worker might diagnosis
that the patient was recently infected with TB. But what may have happened is the patient
had the BCG vaccine or a previous TB infection, and the first PPD test boosted
(stimulated) the body to react to tuberculin (CDC 2000:32), which converted the second
PPD test from negative to positive.
Because the US does not believe that the BCG vaccine is effective, so any
immigrant coming to the United States still needs to be tested by the State Health
Department with a PPD test (Geiter 2000). Confusion exists between public health
workers and immigrants because immigrants know that the vaccine can cause false
positives in the PPD test. For example, Haitians in South Florida believe that they tested
positive in the PPD test because they had the BCG vaccine as children. The Haitians
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believe doctors are wrong when the PPD test is positive because the positive test means
that the BCG vaccine is still effective, not that they have TB: “Some people go to the
doctor, and the doctor tells them they have [TB], and they swear at the doctor, thinking
he doesn’t know [what he’s talking about]” (Coreil 2004: 67).
Another large barrier to taking the preventative medicine is the duration of the
treatment – 9 months. Cross-cultural research conducted in Seattle and research
conducted with Haitian immigrants in South Florida found that it was a struggle for
anyone to take drugs for nine months, which is the typical course of INH. It is especially
difficult for those immigrants who are not sick with active TB (Coreil 2004:67; Rust
2000:4).
As stated previously, INH side effects can be harsh, and many immigrants decide
not take the preventative medicine because of the intense side effects. The best example
is Vietnamese immigrants into the United States. The Vietnamese divided the
preventative medicine and its side effects as hot and cool. The American way of treating
the disease was harsh and considered “hot”; conversely, the East Asian medicine was
gentler and “cool.” The Vietnamese did not want to take the preventative medicine
because treatment represents biomedicine, “strong, overpowering, rapid, destroying a
system to save it” (Ito 1999:13). The difference between the hot and cool symptoms and
treatments also affect the body’s “balance” found among Filipinos. Many Vietnamese
immigrants believe that biomedicine prescribes a medicine for each side effect from the
INH, making the body out of balance (Ito 1999:13).
However, the major factor in Vietnamese compliance and lack thereof is family
and peer pressure. A 34-year-old woman stated, “When I first took it [INH] I felt hot. I
Hagelstein 21
was discouraged and wanted to stop. But my husband encourages me to eat a lot of
vegetables and fruits. I have lasted because my husband encourages me” (Ito 1999:10).
Social pressures help in both encouraging and discouraging Vietnamese in taking the
preventative medicine.
Health Facilities
Although the preventative treatment is free, patients still need to pay for
transportation to the public health center and could possibly miss work to pick up
medicine (Shrestha-Kuwahara 2004:535). Vietnamese immigrants did not like going to
their clinic in California because of its location and poor physical appearance – the clinic
was rundown and unclean. Some Vietnamese patients were afraid to go to the clinic
because of the neighborhood in which it was situated and the number of “homeless,
“junkies,” and “vagrants” near the clinic (Ito 1999:8).
Public health workers also have a role in determining whether immigrants take the
preventative medicine. Haitians in South Florida wanted a health facility with people who
will “take you from far and bring you close”(Coreil 2004:67), meaning that they wanted
close, interpersonal relationships with health professionals and awareness of spiritual
needs. Furthermore, some Haitians did not feel welcome at the TB clinic because there
were not enough Creole-speakers (Coreil 2004:67).
Stigmatization
Stigmatization is mentioned in most research done on cross-cultural issues
surrounding immigrants taking preventative medicine (Coreil 2004:66; Rust 2000:4;
Shetty 2004:81; Shrestha-Kuwahara 2004:533-534; Yamada 1999:479). The type of
stigmatization faced by the other immigrant populations took two forms - ostracism from
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the community, including friends and family, and being considered a “risk group” by the
United States government.
For Filipinos, TB means isolation. Once a person is infected with TB, “the
infected individual is thought to be dirty and is outcast or shunned from society”
(Yamada 1999:479). Even family members will disown a person with TB, which brings
the psychological feelings of “shame, isolation, and loneliness.” Filipinos would rather
avoid diagnosis than be labeled as having TB (Yamada 1999:479). Similar views were
found among Haitians in South Florida towards HIV/AIDS.
Haitian immigrants delay or avoid having medical attention for HIV/AIDS
because they do not want to be labeled as having the disease (Coreil 2004:66). A concern
for stigmatization in the Haitian community is the loss of confidentiality. Many Haitians
are not comfortable with having Haitian secretaries and nurses in HIV or TB clinics for
fear the patient’s medical record will spread throughout the Haitian community (Coreil
2004:65-66). They would rather have a mixture of Haitian and non-Haitian clinical staff.
However, Haitians feel more comfortable with a Haitian doctor, especially one who
speaks Creole (Coreil 2004:68).
The Haitian immigrants’ fear of stigmatization also stems from a political source the United States government. The goal of Vietnamese, Haitian, and Philippine
immigrants is to remain in the United States (Ito 1999:14, Coreil 2004:65, Yamada
1999:479). Thus, anything that might hinder their staying creates a tension between the
immigrants and the United States. For example, when Haitians are tested for TB, they
feel singled out for being a “risk group” because of the increased publicity of Haitians
having AIDS. Haitians feel that because of increased media attention connecting Haitians
Hagelstein 23
to AIDS, the US government is singling them out for TB testing (Coreil 2004:65).
Furthermore, the Vietnamese believed the US government was discriminating against
them for being Class B immigrants because the Vietnamese were being labeled as having
a disease. They associated the US health department with the communist Vietnamese
government, which mistreated them and created suspicion between the government and
its citizens (Ito 1999:14).
Summary
Most research found that immigrants to the US - whether they are Haitian,
Vietnamese, or Filipino - do not want to take the preventative medicine. Biomedicine
does not play as large of a role to why immigrants do not take the preventative medicine
as anthropologists and social scientists thought. Research found that traditional forms of
medicine coincided with biomedicine because traditional forms of medicine explained
and treated what immigrants called the “psychological” causes of TB and helped in
calming the side effects of INH. Furthermore, research gives suggestions to why
immigrants do not take the medicine: misunderstandings between immigrants and the
public health department about the BCG vaccine and the side effects and duration of
INH. The health clinics’ locations and appearance and public health staff’s interpersonal
and language skills. A leading reason is stigmatization. Immigrants do not want to be
stigmatized by their community or be labeled a ‘risk group” by the US government.
Somali immigrants in London, who did take preventative medicine, noted that the lack of
stigmatization played a role in their taking the preventative medicine (Shetty 2004:81).
The research thus far is sparse, but this lack of information leaves room for new
research and theories. The rest of the paper will attempt to answer the question of why
Hagelstein 24
immigrant groups into the US do or do not take the preventative medicine by comparing
Pentecostal Eastern European and Meskhetian Turk immigrants from Eastern Europe to
Lancaster County, PA. They are refugee groups that immigrated to Lancaster within 18
months of each other, both have been persecuted by the Soviet Union and Russian
governments, and both have been educated and vaccinated against TB. However, the
Pentecostal Eastern Europeans opt not to take INH, while the Meskhetian Turks do take
INH.
Pentecostal1 Eastern European Immigrant Ethnographic Work
Why Immigration to the United States
Michael and Irna, Pentecostal Ukrainians, immigrated to Ephrata in August 2003
for economic reasons. Michael was earning the equivalent of 20 cents a day to $30 a
month in Ukraine. Although Michael and Irna had not found jobs in the four months they
had been living in the US, their son, Vladimir, and his wife both have jobs. Vladimir
works in a local factory, and his wife sews for a woman in Lebanon. John, his wife, and
ten children also immigrated to Ephrata for economic reasons. In Ukraine (For a map of
the former Soviet Union, refer to Appendix C), he was a driver and earned only $100 a
month. Because this was not enough to support his family, he also farmed his land and
sold vegetables. When John’s brother moved to the United States, he sent word home to
Ukraine that John could earn $20 a day in the US. John now works as a welder, but he
hopes to find a job more in his field, such as working as a mechanic. Sergie, a
Pentecostal Russian who moved to Ephrata seven months prior to the time of interview,
said that he is earning more here not working than he did while working in St. Petersburg
1
The term “Pentecostal” is self-defined.
Hagelstein 25
because of government pensions and financial help from PRIME-ECR. However, for
most Pentecostal Eastern European immigrants, money is not the only reason they came
to the United States.
Many Pentecostal Eastern European immigrants in Lancaster County left their
homelands because of persecution from Orthodox Eastern Europeans. According to
Stammberger, about 70% of Russians are Orthodox. This large percentage of Orthodox is
the result of a long religious history. In 1653, the Russian Orthodox Church was torn
apart by a reform by Patriarch Nikon. Those who opposed the reform went to southern,
southeastern, and northern Russia to practice religion and were considered “old
believers” (Service 1998). These “old believers” could be punished even to the point of
being put to death, for their beliefs. When other Christian groups, including Catholics and
Baptists, came into Russia during the 1860s to evangelize the “old believers,” many
accepted these forms of Christianity (Pesmen 2000).
However, when social revolutions began in 1917 and in 1918, the communist
government implemented the Decree of the Separation of Church, emphasizing atheism
(Service 1998). In fact, the Bolsheviks allowed religious groups, such as Pentecostals, to
become open about their faith so as to lessen the dominance of the Orthodox Church.
However, as Stalin came into power, the Soviet Union banned certain religious groups,
including Pentecostals, and encouraged atheism (Ramet 1998:14). In 1929, Stalin
implemented a law to eliminate religion from the Soviet Union (Trepanier 2002:57).
When World War II (WWII) began, much of the persecution of religious groups
stopped because Stalin needed citizens to fight for the Soviet Union. However, after
WWII ended from 1958-61, there was an anti-religious drive emphasizing atheism.
Hagelstein 26
Government continued to control religion in the Soviet Union by closing churches and
limiting the amount of people who could enter the seminary up until the Soviet Union
began to disintegrate in 1989.
However, the efforts of the communist government did not prevent people from
secretly practicing different religions (Ramet 1998:35-36). Stammberger remarks that
today atheism is still emphasized by the Russian government, although two laws, The
Law of Freedom of Conscience and Religious Organizations and the Law of Freedom of
Worship, were enacted in 1990 to promote separation of church and state, and allow
religious freedom (Trepanier 2002:61-62). According to Sergie, the persecution while is
not as bad as it was in the past, is still enough to encourage Pentecostal Eastern
Europeans to move to the United States.
Failing Health Care System in Post-Soviet Union
A positive aspect to communism in the Soviet Union was the health care system.
Before 1991, medical care in the Soviet Union was free. According to John, a citizen was
free to choose whatever hospital he wanted to go to, and health care was free. Sergie
described the healthcare system as faster in the Soviet Union than the United States and
said that doctors even made house calls there. After the fall of the Soviet Union in 1991,
however, post-Soviet Union countries fell into economic and social crisis. Money that
was once put into TB care, declined. Lee Reichman (2002) writes, “The old, rigid Soviet
TB system had at least had good organization and reliable supply of drugs. When the
Soviet Union collapsed, there was no longer a reliable supply of drugs, and the
population was weakened by malnutrition, alcoholism, and unemployment.”
Hagelstein 27
Furthermore, less money was put towards the diagnosis, treatment, and education about
tuberculosis.
TB Education, Diagnosis, and Treatment in Russia
In post-Soviet times, every Russian has a chest x-ray every two years (Reichman
2002). Natalia said that if a person works in a high contact area, such as in a hospital or
prison, where the risk of developing TB is high, he/she has a chest x-ray every year.
According to Alexander, if a person is diagnosed with active TB, he is admitted to special
tuberculosis hospitals similar to sanitariums found in the US during early 20th century.
Sergie’s mother had tuberculosis over 50 years ago, and she was admitted to one of the
tuberculosis hospitals. She described the hospital as a “very contagious place,” but the
worst cases of TB were separated from the less serious ones. When Stammberger visited
Russia in 1997, she visited a tuberculosis hospital and described the hospital as having
different rooms with 15-16 patients in each, each room segregated by gender. And
similarly, the more severe patients were separated from the healthier patients.
In 1925, the Soviet Union began vaccinating all children with BCG; and
according to Reichman, at least 90 percent of children today are vaccinated. Natalia said
that the BCG vaccine is given to all four-year-olds in Russia. All the immigrants
interviewed were vaccinated with the BCG vaccine as children.
The Pentecostal Eastern Europeans believe that TB is a disease of the lungs and
that people mostly in prisons contract the disease. The immigrants stated that the Russian
and Ukranian governments were not providing any information about tuberculosis to
their citizens before they immigrated. Natalia stated that only newspapers and magazines
had information; and Sergie only learned about TB after his mother had been treated for
Hagelstein 28
the disease. Alexander noted that Russia did not educate the public about TB, and if
Russia did, they would probably “crash” it (meaning Russia would let the educational
programs fall apart). Alexander noted that not many people where he is from in Russia
had TB, and most cases are found in Siberian prisons.
LTBI Treatment in the United States
Sergie and Natalia began the process of coming over to the United States from St.
Petersburg, Russia, by going through a series of tests, including a general medical checkup, an HIV test, and a chest x-ray to check for TB. Both their chest x-rays were clear for
pulmonary TB, and they were allowed to enter the United States. However, because
Sergie’s PPD test after entering the US was positive, he was sent to Lancaster General
Hospital for a chest x-ray; again, the check x-ray was clear (negative). Sergie then met
with a public health nurse and a pulmonologist, who had himself immigrated to the US
from Russia when he was child. Sergie was given two options. He could take INH for
nine months and decrease his risk of developing active tuberculosis. Or he could opt not
to receive the treatment and have a one in ten chance of developing active TB in the
future. Sergie chose not to be treated.
Sergie does not want to take the preventative medicine even though his PPD test
shows he has LTBI. His friends in Russia urged him not to take the treatment. Irna did
not take INH because she does not feel ill and has heard that the treatment will make her
sick. However, John and Sergie both comment that the public health nurse said that
having LTBI is “unimportant” and that they should be “fine” (fine as in terms of not
developing active TB). Thus, there seems to be some miscommunication between the
public health nurse and immigrants regarding the importance of taking the preventative
Hagelstein 29
medicine. Public health nurses say that taking INH is important, but not as important as
the treatment if the patient developed active TB. All immigrants stated that would take
medicine if they became sick (developed active TB). As seen from these examples, there
are sources of misunderstanding between Pentecostal Eastern Europeans and public
health workers in the taking INH. The sources of misunderstanding include the BCG
vaccine, the INH side effects, and the reputation the American health care system has for
being expensive.
BCG Vaccines, Side Effects, and US Health Care System
Some Pentecostal Eastern Europeans blame the positive PPD reading on the BCG
vaccine. Sergie stated that in Russia it is good to have a positive PPD test, as long as the
bump is not too large because a positive PPD test shows that the BCG vaccine is still
effective and that the person is still immune to TB. However, a large bump means the
person has TB, and no bump indicates the person has no immunity to TB. Nevertheless,
Sergie and Natalia do not trust the vaccine’s effectiveness. When asked whether they
believe the BCG vaccine would protect them and their young son from TB, they were
unsure.
Costello understands that immigrants blame their positive PPD readings on the
vaccine, which may be true if they had received the BCG vaccine within the past year.
The Russian pulmonologist who works meets with immigrants, explains that a year after
being vaccinated, the BCG vaccine wears off. As time increases there is less of a chance
there will be a false positive. However, a PPD test is usually not given if the immigrant
had been vaccinated within the past year. Costello explains that out of John’s family of
12, he was the only person to test positive, even though the whole family had been
Hagelstein 30
vaccinated. If the vaccine were still active, then the whole family should have tested
positive.
Pentecostal Eastern Europeans do not take INH because of its side effects. Many
Pentecostal Eastern European immigrants are hesitant about taking the treatment,
especially when they do not feel sick, so they ask friends and family in Eastern Europe
for advice. The friends and family usually advise them not to take the medicine because
of its harsh side effects. Friends and family say INH is especially harmful to the
immigrant’s liver. Both Sergie and Prof. Taylor, a Russian professor at Franklin and
Marshall College who has LTBI, did not participate take INH because friends in Eastern
Europe told them not to.
The reputation of the American health care system being expensive also plays a
role in Pentecostal Eastern Europeans not taking INH. Although the preventative
medicine is free, Pentecostal Eastern Europeans understand that the US health care
system is expensive. All the immigrants interviewed commented on the costly health
care. For example, Alexander stated it was important to have a good health insurance
company for the best health care. Furthermore, John was glad that his sponsor paid for
his dental check-up because health care is expensive, and he is afraid he will not be able
to afford the medical costs if dental work needs to be done. Pentecostal Eastern
Europeans believe the high cost of health care stems from American doctors earning a lot
of money. John stated that American doctors talk a lot, and want a lot of money. Natalia
explains that doctors are seen as wealthy in the United States, but in Eastern Europe,
doctors and teachers are the lowest paid professions.
Hagelstein 31
Meskhetian Turk Immigrant Ethnographic Work
Why Immigration to the United States
The ancestors of Meskhetian Turks are from Meskhetia, an area in southwest
Georgia, that borders what was once the Soviet Union and Turkey. The Meskhetian are
originally Georgian, but during the 16th century, Turkey took over Meskhetia and many
Meskhetians adapted to Turkish culture by practicing Islam and speaking Turkish (which
they still practice and speak today). In 1829, northern Meskhetia was put under Georgian
rule, while southern Meskhetia remained under Turkish rule. The Meskhetian Turks lived
peacefully in Georgia until Stalin deported entire ethnic groups from this region on
November 15, 1944. Stalin wanted to expand the Soviet Union into Turkey, and ethnic
groups along the border had to be resettled. Around 100,000 Meskhetian Turks (Paul
2004) emigrated to Central Asia, to what is known today as Uzbekistan and Kazakhstan
(Sheehy 1980:24). Furthermore, it is estimated that between 30,000-50,000 Meskhetian
Turks died from hunger and cold while living in Uzbekistan during this transitional time
(Sheehy 1980:24).
On October 31, 1957, the Soviet Union allowed the Meskhetian Turks to move
anywhere in the Soviet Union, except to Georgia or Meskhetia. In response, many
Meskhetian Turks wanted to emigrate to Turkey, but the Soviet Union denied their
repeated requests (Sheehy 1980:25). Stammberger said that the Meskhetian Turks were
tolerated in Uzbekistan and Kazakhstan until the Soviet Union began to fall in 1989. At
that point, Uzbekistan Nationalists began to fight the Soviet Union for Uzbekistan’s
independence. The Nationalists wanted Meskhetian support, but Meskhetian Turks
refused because they wanted to return to Turkey. Meskhetian Turks living in Uzbekistan
Hagelstein 32
then began to immigrate to the Krasnador Krai region, in Southern Russia near Georgia.
The governor of Krasnador wanted ethnic purity and, therefore, persecuted ethnic groups
such as Meskhetian Turks by denying 15,000 Meskhetian Turks Russian citizenship. The
Meskhetian Turks appealed the decision, but Vladimir Putin backed the Krasnador
government. The European Union and the United Nations tried to negotiate with
Krasnador and, in response, Turkey and the United States offered refugee status for the
Meskhetian Turks to bring peace to the Krasnador region (Paul 2004).
The Krasnador persecution influenced everyday life for Meskhetian Turks. Lina,
who moved to Krasnodar in 1990 and immigrated to the United States in December 2004,
stated that after the fall of the Soviet Union, Russia would not give them citizenship, even
though there was a law that stated they should receive citizenship. For 15 years, Lina and
other Meskhetian Turks were “followed” by Russian soldiers and it was hard for her and
her husband to find work. On the television, “bad things” were said against Meskhetian
Turks to rally local hostility against them. Furthermore, Matthew, Andre’s brother (both
of them immigrated earlier this year) said that even though he had a good job in Russia,
he would often work 24 hours at a time, and then the police would come at night and
detain him overnight for not having proper documentation. He told of his weekly
visitation to his brother while in Russia. Andre had a passport, but Matthew did not.
Before they reached a checkpoint when traveling to visiting each other, Matthew would
run through a field behind the checkpoint, while Andre would go through the checkpoint.
On the other side of the checkpoint, Andre would pick Matthew up again. Matthew stated
while laughing, “It was like the commandos in World War II.”
Hagelstein 33
Having moved from a hostile environment to the United States, all the
Meskhetian Turks expressed joy and gratitude, specifically for the friendly people they
found here, freedoms of religion and speech, and for the democratic government. Paviol,
Linda’s husband, prefers the United States over Russia, because the US respects the
rights of people, the country cares about them, and he and his wife are able to live and
work. Additionally, Irna, Andre’s wife, is happy to be in the US because it is a country
full of immigrants, and a country full of immigrants is not nationalistic. Andre’s mother,
who is 76 and immigrated to the US within the past year, explains that since coming to
the United States, she feels ten years younger. She was nervous about coming, but after
arriving, Americans treated her as if she were their own relative. She is writing poetry
about how much she appreciates the US. She thanks the US 100 times. If she ever saw
George Bush, she would kiss him on the head.
Health Care in Russia versus the United States
Matthew sums up his feelings about his immigration by saying that America is
paradise compared to Russia. However, there is one aspect of the United States that does
not make it paradise: the United States health care system, specifically the expense.
Andre and Irna both explain that although they heard that the American health care
system was very expensive, they found it to be much better quality than what they
received in Russia. Matthew, who immigrated to Massachusetts in the month prior to
being interviewed, explained that health care in the Soviet Union was well organized.
Every Russian citizen was given a “booklet” that contained their medical records from
birth to death. However, after the fall of the Soviet Union, the Russian health care system
was neglected.
Hagelstein 34
Matthew said that the Russian health care system is now made up of clinics. He
continued to explain that these clinics do not take appointments, and doctors see patients
based on their age (the older the person, the more likely they will be seen), which
translates into waiting, even as long as a full day. Meskhetian Turks do not blame the
long wait on the doctors, but rather on the fact there are so many people needing care. A
year before immigrating, Andre was in a car accident and developed a concussion, so
severe that “he could not remember things.” Nevertheless, he had to wait two days before
being seen in a clinic. Finally, his family gathered enough money to take Andre to a
private hospital. The hospital cost $100 per day, approximately a month’s salary. Andre
stayed in the hospital only for a week because they could not afford the hospital fee. The
poor post-Soviet health care system and persecution of the Meskhetian Turks are
intertwined and revealed in TB education, diagnosis, and treatment in Russia.
TB Education, Diagnosis, and Treatment in Russia
Meskhetian Turks stated that they did not know much about TB disease,
symptoms, or treatment. For example, Paviol did not know anyone with TB but said that
ethnic Russians believed that Meskhetian Turks were sickly with TB and/or were drug
addicts. Paviol defends Meskhetian Turks by clarifying that they do not have drugs in
their system and do not have TB. Paviol does know that TB is a lung disease, believes
that only people in prison develop the disease, and that if a person does have TB they are
sent to a special hospital that is “cut off from the rest of the world.” Paviol reiterated that
he does not know much about the disease. Interestingly, Irna made the same statement
that she did not know much about TB. She explained that TB is a disease in the lungs and
Hagelstein 35
moves into the bronchiole tubes, and that she was immunized against it regularly in
school.
Matthew was the most descriptive in describing TB in Russia and among
Meskhetian Turks. He learned that TB was caused from “poor” air and that people who
were stressed and worried caught TB. He thought TB was something in the lungs that
developed from a cold. People sick with TB went to a sanatorium. When he was living in
Uzbekistan, the sanatorium was located outside the city. Russian citizens held the
sanatorium in high opinion because it had “good” air and its patients were treated well.
Furthermore, the doctors who work at the sanatorium had good reputations. Russia spent
a lot of money on the hospital because so many citizens had TB. Matthew said that
Uzbekistan was a good place to have a sanatorium because it had very warm, dry air, and
he believes TB patients need dry air to recover.
Matthew stated that children were taught about TB and immunized in elementary
school. Children would go to the equivalent of the United States “daycare” for seven
years, free. There the children would be checked regularly for TB. In elementary school,
the government tested twice a year for the disease. Russian citizens were also tested when
they graduated from high school, when applying for a driver’s license, and at work. Lina
more specifically commented that she did receive the BCG vaccine, once in the upper
shoulder and once in the lower shoulder. She and her classmates were immunized every
year at the beginning of the school year.
LTBI Treatment in the United States
Because the Meskhetian Turks did not have Russian passports, they came through
the International Organization on Migration (IOM) under refugee status. IOM set up
Hagelstein 36
chest x-rays to test for TB. Lina’s chest x-ray was clear, and her paper work stated that
she did not have TB. Her chest x-ray was performed on August 2nd, and she immigrated
to the US four months later in December. After immigration into the United States, she
and her husband went to the public health clinic to be tested for TB. Lina, who tested
positive for LTBI, states that although she had a “little” TB (little bump produced from
the PPD test), the TB might “grow,” and the preventative medicine is needed so the TB
does not grow.
Irna had a similar experience when coming over the United States. She notes that
the Russian-speaking doctor who discussed her LTBI with her, was very good. Irna’s
husband also tested positive for LTBI when he came to US and received written
information from the public health department. He now visits the public health
department for his monthly supply of medicine. He explains that he takes the medicine
for nine months. Irna states that she and her family are taking the preventative medicine
because if the government (United States) thinks that she should take the medicine and it
is offered, then it is necessary. She states, “If the government is concerned, then they [she
and her family] are happy to the take the medicine.”
Discussion
Pentecostal Eastern European and Meskhetian Turk immigrants to Lancaster
County are both from Eastern Europe, have been relocated within Russia by the Soviet
Union and Russian governments because they are minority groups, and immigrated to
Lancaster County within 18 months of each other. Furthermore, both sets of immigrants
were vaccinated with the BCG vaccine, and while in Russia, repeatedly tested negative
for pulmonary tuberculosis through chest x-rays. But once in the United States, about half
Hagelstein 37
of the immigrants interviewed tested positive for LTBI. Additionally, people from both
groups commented that the Russian government did not provide much education about
the TB disease, but if they did become sick, they were sent to sanatoriums (See Table 4).
Table 4. Similarities and Differences between Pentecostal
Eastern European and Meskhetian Turk Immigrants.
Immigrated From
Immigrated To
Time of Immigration
Reason for Leaving
Religion
Language
History
TB Education
BCG Vaccine
Tested Positive for
LTBI
Take Preventative
Medicine
Reasons for (Not)
Taking INH
Pentecostal Eastern Europeans
Eastern Europe (Russia, Ukraine)
Lancaster County
~Summer of 2003
Persecution (economic reasons)
Pentecostal
Russian/Ukrainian
Lived in Russia, freedom/no
freedom to practice religion
Not much, tests in schools
yes
Half of immigrants
Meskhetian Turks
Russia
Lancaster County
~Fall of 2004
Persecution (ethnic reasons)
Muslim
Turkish
Moved from Georgia,
Russia, want to go back to
homeland
Not much, tests in schools
yes
Half of immigrants
No
Yes
Misunderstanding of BCG
Vaccine, INH side effects,
suspicion of government
Fear/Love of government
Not want to be considered
“risk group”
If the history, TB education, and TB diagnosis are similar for both Pentecostal
Eastern Europeans and Meskhetian Turks, why do none of the Pentecostal Eastern
Europeans who tested positive for LTBI opt to take the medicine, while all the LTBIpositive Meskhetian Turks do take the preventative medicine? How the US government
is perceived by each immigrant group, religion, and ethnicity may provide the answer.
Hagelstein 38
Pentecostal Eastern Europeans: the Same But Different
It is not the role of traditional medicine versus biomedicine, the US health
facilities, or even so much stigmatization for having TB that explains why Pentecostal
Eastern European immigrants do not take preventative medicine. Rather, as most
Pentecostal Eastern European immigrants interviewed stated, it was problems with their
diagnosis from the BCG vaccine, INH side effects, and the role of government.
As was found in the case of Haitian immigrants in South Florida (Coreil 2004:67),
Pentecostal Eastern Europeans believe they tested positive for LTBI because of the BCG
vaccine. Even if the Pentecostal Eastern European immigrants did not believe in the
effectiveness of the BCG vaccine, they believe the bump from the PPD test shows that
the BCG vaccine is still effective and they do not have LTBI. In effect, the Pentecostal
Eastern Europeans do not understand why they should take a medicine when they are not
sick.
Another major factor in Pentecostal Eastern Europeans not taking the preventative
medicine is the infrequent, harsh side effects of INH. The Vietnamese and Pentecostal
Eastern Europeans are similar that both do not want to take the preventative medicine
because of the side effects and because of the question, “why should they take a treatment
that might make them sick, even though they are not sick from the disease the medicine is
fighting?” But the Vietnamese still take the preventative medicine (Ito 1999:13).
The difference between the Pentecostal Eastern Europeans and the Vietnamese
taking the preventative medicine is the social factors. When beginning treatment,
Vietnamese want to stop treatment because of the “hot” side effects, but because of
family and peer pressures they continue the treatment. Pentecostal Eastern Europeans,
Hagelstein 39
however, do not take the preventative medicine because family and friends in Russia tell
them not to take the medicine because of the harsh side effects.
The Vietnamese and Pentecostal Eastern Europeans have something else in
common. The Vietnamese and Pentecostal Eastern Europeans both lived under
communist governments. Because they were used to being mistreated by the communist
Vietnamese government, the Vietnamese immigrants felt that they were being
discriminated against again, this time by the US government by being labeled as Class B
immigrants (Ito 1999:14). There are interesting parallels between the Vietnamese and
Russian immigrants because both their governments were communist at some point in
their history and both immigrant groups were persecuted by the communist government.
The Vietnamese immigrants provide insight to why Pentecostal Eastern Europeans do not
take the preventative medicine.
Government Roles
Pentecostal Eastern Europeans have reason to be skeptical about the US
government and health care because of historic discrimination in Russia. Pentecostal
Eastern Europeans have been persecuted by the Soviet Union and Russian governments
for decades. It is also true that the Soviet and Russian governments provided free health
care to all Russians. But just because the Pentecostal Eastern Europeans relied on the
Russian health care, including TB care, does not necessarily mean Pentecostal Eastern
Europeans did not have an underlying suspicion of the Soviet Union and Russian
governments. Pentecostal Eastern Europeans immigrated to the United States as refugees
because the Russian government persecuted them for their religious beliefs. Pentecostal
Eastern Europeans were mocked and prohibited from practicing their religion, which was
Hagelstein 40
a constant reminder that they were a religious minority. The discrimination plays a role
in how the Pentecostal Eastern Europeans view the US government and US’s TB care.
When the Pentecostal Eastern Europeans immigrate, the US government educates
them about TB - not only active, but also the latent form - how the disease is contracted,
and how it can be treated. However, the US government leaves the decision of LTBI
treatment to the immigrant. But a history of persecution and suspicion of the government
makes the Pentecostal Eastern Europeans ask – just as the Vietnamese immigrants asked
– “Is the US government discriminating against them as the Soviet and Russian
governments did?” Now that the Pentecostal Eastern Europeans are in the position to
question the US government about their TB care, they ask questions such as, “Is the
education the US government providing correct?” For many immigrants, being told that
the BCG vaccine, which was so heavily relied upon in Russia, is actually ineffective
seems incorrect, which was expressed by many of the Pentecostal Eastern Europeans.
Second, is the information provided by US government understandable? At the time of
interviewing the Pentecostal Eastern Europeans, none of the educational pamphlets were
in Russian. However, the pulmonologist teamed with the public health worker to discuss
INH treatment is Russian and speaks Russian. Thus, the Pentecostal Eastern Europeans
rely on friends and family back in Russia for advice. Interestingly, friends and family
know about INH’s harsh side effects and advise the immigrants not to take the medicine.
Meskhetian Turks: Unusual Group of Immigrants
The Meskhetian Turks are an unusual immigrant group because all four who
tested positive for LTBI opted to take the preventative medicine. They are unusual not
only because they take INH, which is different from most other US immigrant groups
Hagelstein 41
(Coreil 2004:64, Houston 2002:257, Ito 1999:1, Shrestha-Kuwahara 2004:529, Yamada
1999:478), but also for the reasons they decide to take the preventative medicine.
Similarities exist between other immigrant groups and the Meskhetian Turks. For
example, Matthew stated that stress could cause TB, which can be equated to the
Vietnamese beliefs that there are psychological and physical causes of TB, and one way
to treat psychological tuberculosis is through reducing worries and anxiety (Ito 1999:13).
But contradictory to the Pentecostal Eastern European immigrants, the effectiveness of
the BCG vaccine and INH’s harsh side effects were not mentioned by the Meskhetian
Turks, although each immigrant received the same information about TB from the public
health center.
When coming to the United States, instead of becoming self-reliant in their
treatment of TB like the Pentecostal Eastern Europeans, Meskhetian Turks embraced the
US health care system and TB care. The Meskhetian Turks stated that they were taking
the preventative medicine because the US government wanted them to take the medicine.
Before coming over the US, the Meskhetian Turks said that they knew very little about
TB, except that it was a lung disease. After coming to the United States, being diagnosed
with LTBI, and after meeting with the public health department, the Meskhetian Turks
still said that they still knew very little about the disease. So the focus of the preventative
medicine for the Meskhetian Turks is not fighting the disease, as such is the case of the
Pentecostal Eastern Europeans, but instead a trust in the US government and its
extensions, the public health department.
In Russia, ethnic Russians believed that Meskhetian Turks had tuberculosis, when
in fact many of them did not. This social stigmatization singled the group out from the
Hagelstein 42
rest of the Russian citizens. In a country that regularly persecuted certain ethnic groups,
being “singled out” by the Russian government was yet another form of Russian
persecution of Meskhetian Turks, which is similar to the Haitians living in Southern
Florida. Haitians were labeled as a “risk group” by the US government because of the
publicity connecting Haitian with AIDS, thus leading to US stigmatization towards
Haitians. So for Meskhetian Turks opt to take the preventative medicine because they do
not want to be considered a “risk group” by the friendly and accepting US government.
Symbolic Value
Symbols play an important role in everyday life and can help define culture.
Clifford Geertz (1988:541) believes that culture is made of symbols with meaning:
“Culture is most effectively treated, the argument goes, purely as a symbolic
system, by isolating its elements, specifying the internal relationship among those
elements, and then characterizing the whole system in some general wayaccording to the core symbols around which it is organized, the underlying
structured of which it is a surface expression, or the ideological principles upon
which it is based.”
TB is a symbol that can be extracted from culture, both American and Eastern European
culture. From US history, what TB has meant culturally has gone in a circle. To begin,
TB was thought to be a disease of immigrants, urbanization, and the poor. Then during
the late 1800s and early 1900s, when all classes of society were susceptible to the
disease, TB became “fashionable.” Then with the onsite of public health measures and
chemotherapy, TB became again, a disease of immigration, urbanization, and the poor. In
Eastern Europe, however, TB always been looked upon as a disease of delinquents,
Hagelstein 43
specifically it is viewed that prisoners have TB. The connection between prisoners and
TB was mentioned by both Sergie and Paviol.
The symbolism each culture has of TB collides when Eastern Europeans
immigrate to the US. The Eastern European immigrants do not want to be associated with
a disease that symbolizes prisoners, but the immigrants do not realize that having TB in
the US symbolizes immigration, urbanization, and the poor. When the Pentecostal
Eastern Europeans decide not to take the preventative medicine, they are not subject to
the American symbols of TB - immigration, urbanization, and the poor. The Meskhetian
Turks, however, do the take the preventative medicine, making them prone to the
symbolism Americans have of TB.
But the Question Still Remains
The question still remains, why do the Meskhetain Turks opt to take the
preventative medicine, but the Pentecostal Europeans do not? Or the more pertinent
question needs to be answered – why do the Meskhetian Turks trust and embrace the US
government to take the preventative medicine, while the Pentecostal Eastern Europeans
are suspicious of the US government and not take the preventative medicine? Why do the
Meskhetain Turks fear the US government, while the Pentecostal Eastern Europeans feel
they can question the US government? The Pentecostal Eastern Europeans call friends
and family in Russia for advice, but the Meskhetian Turks do not, Why? Unfortunately,
my research does not provide the answers to these questions. However, suggestions, such
as religion and ethnicity, can be made to why each immigrant group views the US
government differently.
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Religion
Pentecostal Eastern Europeans
The Pentecostal Eastern Europeans and Meskhetian Turks could have different
views on health and healing because of their religions. Pentecostals believe in faith
healing, which the belief that healing comes from God and the healing depends on the
person’s faith, “Physical healing is not for certain, automatic, or subject to formula”
(Poloma 1989:53). Pentecostals believe miracles and even baptisms can heal people. It is
not that Pentecostals cannot see a doctor or participate in biomedicine, but that God gave
them an illness; and to be healed physically, the patient has to make right with God
spiritually. Furthermore, people who use faith healers do not tell their medical doctors for
fear of losing them (Poloma 1989:57). The Soviet Union forbade faith healing because
they believed it was “superstitious and backward” (Ramet 1998:320). However, after the
fall of communism, faith healing was allowed in Eastern Europe (Ramet 1998:320).
Faith healing could have a role in Pentecostal Eastern Europeans reluctance to
take the preventative medicine. Assuming Pentecostal Eastern Europeans believe in faith
healing, the immigrants could believe that the preventative medicine cannot prevent them
from developing active TB, only God can prevent the development of disease. Possibly,
their church congregation is praying for the Pentecostal Eastern Europeans, and they do
not want to tell the public health clinic. Or possibly they are using excuses, such as the
BCG vaccine and INH side effects, so they do not have tell the public health clinic about
their faith healing. While interviewing John and his family, I asked if he would take the
TB medicine if it were given to him. His reply was “yes, maybe, I am not worried.
Nobody thinks bad of me and wants anything bad to happen to me. I trust in God.” This
Hagelstein 45
statement shows John’s faith in God and God’s power in his life, which coincides with
the Pentecostal thinking that God can heal all.
Furthermore, when Pentecostals call friends and family back home, the friends
and family could be Pentecostal and/or part of the Pentecostal church. So when the
Pentecostal Eastern Europeans tell the public health nurse that friends and family back in
Eastern Europe tell them not to take the preventative medicine, what could be happening
is the friends and family are praying for them, and the immigrants do not want to disclose
their faith healing. Hiding of the faith is also relevant to Pentecostal Eastern European
history. Maybe fear that the US will persecute them for their beliefs or for fear of losing
medical doctors, the Pentecostals believe it is easier to hide their faith and faith healings.
Meskhetian Turks
Meskhetian Turks are Muslim, which is a religious minority in both Russia and
the United States. Although the Meskhetian Turks may have been persecuted for their
faith, when compared to Pentecostal Eastern Europeans, religion does not seem to play as
large of a role in why Meskhetian Turks were persecuted by the Soviet Union and Russia.
However, Meskhetian Turks’ faith may have a role in taking the preventative medicine.
The role that Muslim faith has in medicine is that:
“And no doctor could believe that medical treatment was futile because it was
God who did or did not do the healing. The general attitude that finally came to
settle among Muslims, whether learned or not, was that God who produces all
events in nature and in persons, but that he does not do so without certain
objective conditions. Humans are charged with producing and manipulating these
conditions and interfering in nature in certain ways, but it is God who causes the
results” (Rahman 1987:16).
Unlike the Pentecostal Eastern Europeans, Meskhetian Turks believe that God may have
given them the disease and knows the end result of the disease, but the patient can decide
Hagelstein 46
how to treat his/her disease. So God may give the Meskhetian Turks TB and God knows
the end result, but the Meskhetian Turks can take the preventative medicine to
“manipulate” the end result (Rahman 1987:16).
Another aspect of Muslim faith and the United States is lingering suspicion of
Muslims after September 11, 2001. Possibly, the Meskhetian Turks do not want to be
singled out as a “risk” group, not only because of the connection between them and TB as
it was in Russia, but also because of their religious beliefs. Taking the preventative
medicine may be a way of diverting the US attention away to the fact that they are
Muslim.
Ethnicity
Meskhetian Turks
Why do the Meskhetian Turks trust the US government so much as to take the
preventative medicine? Some possible reasons are the United States is a new home for
the Meskhetian Turks, and the US is a country of immigrants, like them. The Meskhetian
Turks are considered Turks by the Russian government. Not only are Meskhetian Turks
not considered Russian by the Russian government, but they also speak Turkish as their
first language. Some have lived under Georgian, Uzbek or Kazak, and Krasnador rule.
The Meskhetian Turks do not have a home. They do have a homeland – Turkey, but have
been denied the chance to return despite years of protesting. However, when the
Meskhetian Turks moved to the United States, they found a welcoming and friendly
country. The US becomes the Meskhetian Turks new home. Andre’s family is living in
Lancaster, his brother is moving his family to the United States, and before that their
Hagelstein 47
mother immigrated to the US. The Meskhetian Turks can build a new life for their family
and know with some assurance that the government will not make them resettle.
Furthermore, Irna states the United States was built by immigrants. Most
Americans are immigrants, so Meskhetian Turks fit in the US because they are also
immigrants. They may feel that the US government cannot persecute them for being an
ethnic minority because most US citizens are of different ethnicities. With the belief that
the US can be their homeland and is a country of immigrants, Meskhetian Turks can trust
the US government.
Pentecostal Eastern Europeans
Pentecostal Eastern Europeans, on the other hand, are ethnically Russian. They
speak Russian and have not been resettled by the Soviet Union or Russia. However, the
Pentecostal Eastern Europeans have been persecuted for decades by the Soviet Union.
First, the Soviet Union supported the Russian Orthodox Church, then atheism, then
freedom of religion in order to undermine the Russian Orthodox Church, then back to
atheism, and finally, freedom of religion. Pentecostal Eastern Europeans are used to
manipulative and selfish government. As stated previously, the Pentecostal Eastern
Europeans bring their history and possibly their hostility towards government to the
United States, making Pentecostal Eastern Europeans skeptical of the US government.
If Done Again
The research in this paper has some faults. First, I do not speak Russian, so I was
not fully able to interpret and understand all of the interviews. However, Laura, my
interpreter, was very good about relating exact translations. Second, my interviews of the
Hagelstein 48
Pentecostal Eastern European and the Meskhetian Turks immigrants were within 18
months of each other. After interviewing the Meskhetian Turks, I had more questions for
the Pentecostal, but because of the long span of time between interviews, I lost my
Pentecostal Eastern European contacts. Furthermore, the interviews were conducted
differently with each immigrant group, which brings me to my third fault. I am an
amateur anthropologist, and with time and practice my interviewing and skills increased.
The interviews with the Pentecostal Eastern European immigrants were the first
interviews I ever performed. However, over the 18 months and with more interviews, my
skills became more refined, making the interviews with the Meskhetian Turks more
useful. But as always, anthropologists are improving their skills with each interview.
Conclusions
Despite the importance of TB, there exists dispute over the best means to treat it.
A disease that was killing one in fifty people three hundred years ago (Massachusetts
1854:11) has an incidence rate today of 5.1/100,000 (CDC 2004b). Today, in the United
States, TB draws little attention. TB has an interesting trend of following immigrants.
The industrialization revolution in Europe brought urbanization and unsanitary conditions
allowing TB to be easily spread. As people from this area of the world immigrated, they
brought their diseases with them. In the United States, at the height of the industrial
revolution and immigration, TB was becoming a major killer, killing 350/100,000 people
per year just in Philadelphia. It was through the efforts of public health, nurses, and the
trend of people moving west that rates of TB began to decline. The development of
chemotherapy for TB during WWII furthered the decline of TB, making TB look like a
disease of the past. But as time went by, TB rates increased, eventually leading to an
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epidemic in the US during the late 1980s. From the epidemic, an awareness has been
raised to the new factors in diagnosing and treating TB. Today, there are high risk groups,
such as the homeless, prisoners, persons with HIV/AIDS, and the foreign-born, who are
the most likely persons to develop TB in the US.
Not until the last ten years has research concluded that chemotherapy is not the
only way to fight TB in foreign-born patients but cultural and social factors are also
important. Because this attention to cultural and social factors is recent, little information
is known on how best to treat foreign-born citizens, specifically those with latent
tuberculosis. It was thought by most anthropologists and social scientists that many
immigrant groups in the United States do not take the preventative medicine because
immigrants do not believe in Western biomedicine but rather in their traditional ways of
healing. The hypothesis turned out to be false; and, in fact, immigrants believe that
biomedicine and more traditional ways of healing overlap for the best treatment (Coreil
2004:65; Houston 2002:261; Ito 1999:10-11; Shrestha-Kuwahara 2004:532; Yamada
1999:480).
Further research has found that immigrants decide not to take the preventative
medicine because of the questionable efficacy of the BCG vaccine (Coreil 2004:67), the
length of treatment (Coreil 2004:67; Rust 2000:4), and the harsh side effects of INH (Ito
1999:13). Additionally, health facilities play a large part in immigrants’ hesitancy to take
the preventative medicine because of the location of the clinic (Shrestha-Kuwahara
2004:535; Ito 1999:8) and the impersonal staff (Coreil 2004:67). Finally, stigmatization
plays a large role in immigrants not taking the preventative medicine. Immigrants felt that
they would be ostracized by friends and family for being labeled as having TB, even if it
Hagelstein 50
was LTBI (Yamada 1999:479; Coreil 2004:66). Furthermore, immigrants would not want
to be labeled a “risk group” by the US government for having TB (Ito 1999:14; Coreil
2004:65; Yamada 1999:479; Ito 1999:14).
After interviewing Pentecostal Eastern European immigrants who opt not to take
the preventative medicine and Meskhetian Turk immigrants who do take the preventative
medicine, my research would agree with previous research that suspicion of biomedicine
is not the cause of why immigrants are not taking the preventative medicine. Pentecostal
Eastern Europeans do not take the preventative medicine because of misunderstandings
with the BCG vaccine and INH’s side effects. However, more attention and consideration
needs to be given to the role of government, religion, and ethnicity. Both Pentecostal
Eastern European and Meskhetian Turk immigrant groups came from a communist
government and have been persecuted by that government. Immigration to the US
brought more freedoms, including choice in health care options. The Pentecostal Eastern
Europeans could carry their suspicions of government from Russia to the US, creating
skepticism between them and the US government, and thus creating a barrier between
them and the government provided preventative medicine. The Meskhetian Turks, on the
other hand, embraced the US government and the US health care system. The Meskhetain
Turks possibly took the preventative medicine from fear of a barrier being made between
the US government and themselves.
Religion may also play a critical role in determining why Pentecostal Eastern
Europeans opt not to take the preventative medicine whereas Meskhetian Turks do. A
major component of Pentecostal religion is faith healing, where a patient must make right
with God before he or she can be physically healed (Poloma 1989:57). Church members
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can help in the healing process by praying for them (Poloma 1989:53). Perhaps the
Pentecostal Eastern Europeans do not take the preventative medicine because instead of
participating in biomedicine, they are relying on church members and relatives back in
Eastern Europe to pray for them. Furthermore, the Pentecostal Eastern Europeans could
be using excuses, such as the BCG vaccine and INH side effects, so they do not openly
have to talk about their faith healing for fear of persecution, as in Eastern Europe.
Alternatively, Meskhetian Turks, who are Muslim, believe that they have a role in
their healing. The Muslim faith believes that although God may have given them TB and
God knows the end result of the disease, the patient can “manipulate” the end result by
seeking biomedicine, which in the case of TB is the preventative medicine (Rahman
1987:16). Additionally, possibly Meskhetian Turks do not want to be considered a “risk”
group for their religious groups, especially after the events of September 11, 2001.
Although questions remain, suggestions can be made for Pentecostal Eastern
Europeans to take the preventative medicine. The first is education, education, and
education. Public health nurses, the Russian pulmonologist, and pamphlets are good, but
they are not enough. To begin, all education needs to match immigrant’s language,
culture, and educational level. Pamphlets, especially, need to be fully understood by
immigrants, because this is the information they take home and read. And always, the
more information and the more forms of education available, the more effective it is.
Furthermore, all public health nurses need cross-cultural training. The Haitian immigrants
in South Florida stated that they wanted public health nurses who “take you from far and
bring you close” (Coreil 2004:67). Cultural training can help medical staff understand
and develop good interpersonal skills with immigrants.
Hagelstein 52
Language has a large part to do with education. The Russian pulmonologist is a
great asset to immigrants taking the preventative medicine. He not only speaks to Russian
immigrants in their own language, but he also creates a level of comfort between the
immigrants and himself. However, the immigrants meet with the Russian pulmonologist
only once. Having an interpreter, who is Russian and is present at every meeting between
the immigrant and the public health nurse, would help in education and comfort of the
immigrants. Most immigrants do bring a friend or relative to interpret for them or the
AT&T Language Line (See List of Terms) is used to translate, but information can be
lost. Having a Russian who is hired by the public health clinic gives assurance to the
public health nurse that all translations are correct.
Immigrants also need time to adjust. Time is needed for any transition, but
especially when immigrating to a new country. It is standard procedure that immigrants
report to the public health clinic for TB tests within the first month of immigrating. This
is when the adjustment to a new country begins. There needs to be time for immigrants to
gather information in their language, talk with friends and family back in Eastern Europe,
and question public health nurses and an interpreter about taking INH. Furthermore, if
immigrants decide not to take the preventative medicine now, it does not mean they will
not take the medicine in the future. Possible check-ins by the public health nurse or the
Russian interpreter would be appropriate to keep the immigrants thinking about TB.
As seen from the past battles with tuberculosis, it will take public health and
chemotherapy to combat the disease. But patience and understanding is also needed.
Public health nurses, who visited immigrants in their homes during the industrial
revolution, needed patience and understanding to overcome language, cultural, and
Hagelstein 53
religious barriers. Today, when more than half of TB cases in the US are foreign-born,
patience and understanding are still needed to fight the disease. However, what is
different from 150 years ago are resources. Today, public health clinics, government
agencies, and research facilities have access to anthropologists and social scientists for
not only their knowledge about different ethnic groups, but also their skills to research
why some ethnic groups opt to take the preventative medicine and other groups do not. In
the end, by working together, we will be one step closer in the fight against TB.