Summary
The Democratic Republic of Congo (DRC) has a high incidence of tuberculosis (TB) disease, ranking 8th highest in the world. Individuals may be hesitant to undergo screening due to a history of political instability and autocratic rule resulting in widespread distrust, lack of understanding of the U.S. medical system, and the dual stigma of TB and its associations with human immunodeficiency virus (HIV). There is confusion in the community regarding the diagnosis of latent TB infection (LTBI) and its distinction with TB disease. There is also less awareness of blood testing (e.g. interferon-gamma release assay, Quantiferon) because skin testing has been more prevalent in the DRC, though LTBI screening is not routinely conducted there. Many recent immigrants mentioned TB treatment in the DRC being offered from the same medical clinics where HIV patients are treated, which compounds the stigma of the disease.
Recommendations:
- TB screening for all individuals from the DRC with blood tests (e.g. interferon gamma release assay, Quantiferon) rather than skin testing (e.g. tuberculin skin testing, Mantoux).
- Discuss TB screening separately from HIV screening; be aware of the strong association of HIV and TB in the Congolese community.
- Explain the difference between latent TB infection and TB disease with the knowledge that most Congolese are not aware of latent TB infection.
- Begin a short course LTBI treatment regimen and explain the differences between LTBI and TB disease treatment regimens with which they might be more familiar.
- Close follow-up in clinic once treatment has been initiated to ensure continued adherence to the regimen.
Methods
The following sections are based on transcripts of interviews with six Congolese community members who were identified by a Congolese community navigator contracted with Public Health – Seattle & King County and through other community contacts. Interviews were conducted either in English or French with a Congolese community navigator providing interpretation. A supplemental literature review was also performed.
Burden of Disease
2022 WHO statistics of the Democratic Republic of the Congo (DRC) [1]
Total tuberculosis (TB) incidence (number): 314,000
Total TB incidence (rate per 100,000 per year): 318
HIV-positive TB incidence (number): 22,000
HIV-positive TB incidence (rate per 100,000 per year): 22
Total Population (2023): 102 million (www.data.worldbank.org) [2]
Languages Spoken
French is the official language of the DRC. However, there are four additional recognized national languages: Kikongo, Lingala, Swahili, and Tshiluba.
Most francophones in the DRC know of tuberculosis by the French term “tuberculose”. In Lingala, it is sometimes referred to as “Kosu Kosu ya ntolo ” which means chest cough, or “kosu kosu ya pema”, which refers to chronic cough. In Swahili, tuberculosis is “Kifua Kikuu”.
Bacillus Calmette-Guérin (BCG) Vaccination
Rates and Understanding
The BCG Vaccination was introduced to the DRC in 1984. A single dose is administered at birth.
There is an estimated BCG coverage of 73% in 2019 [3] (www.bcgatlas.org).
Some respondents noted a common perception of the BCG vaccination being protective against TB disease, even into adulthood.
Diagnosis and clinical features
Recognized by the Community
Most respondents identified symptoms of TB disease as being chronic. Community members stated that their level of suspicion for TB increased with persistent symptoms, particularly symptoms of cough, fatigue, or weight loss. However, only some respondents understood that TB infection can be latent or inactive. Respondents who were familiar with latent TB infection referred to it as “sleeping” TB. Overall, there is a consensus among respondents that there is a general lack of awareness in the Congolese community regarding the distinction between TB disease and latent TB infection (LTBI).
All respondents understood that TB is contagious and transmitted via coughing/breathing. Some noted that individuals with TB disease are usually isolated from the general public and that it is dangerous to be in close contact with someone diagnosed with TB.
TB is considered to be a serious disease with the potential to be fatal.
TB/HIV Co-Infection
Clinicians should recognize the intertwined nature of the HIV-TB co-epidemic, not only in medical clinical terms but also in its social consequences.
Most respondents noted that there is a widespread perception that TB disease occurs in those with HIV infection. A perceived similarity in symptoms like weight loss and fatigue perpetuates the stigma against TB disease and creates a double stigma against TB and HIV/AIDS [4] (Daftary 2012). The interlinked nature of these two illnesses can lead to individuals concealing their TB disease status or preventing them from seeking treatment in an attempt to avoid stigma.
In the DRC, TB and HIV care are funded by Global Fund, and TB disease cases are usually treated in HIV clinics. Directly observed therapy (DOT) is widely practiced for TB disease treatment in the DRC. Patients who are required to go into HIV clinics daily to receive treatment for TB disease often face double stigma. Since most of the general public is aware that HIV requires lifelong treatment, the relatively long treatment period of TB disease (6-9 months) further increases the association between the two diseases.
The DRC ranks eighth among countries with the highest rate of TB/HIV co-infection [5] (https://www.who.int/teams/global-tuberculosis-programme/tb-reports/global-tuberculosis-report-2023).
There is an estimated HIV prevalence of 0.6%, with about 490,000 HIV positive individuals out of a total population of about 95 million. Based on recent WHO data (https://cfs.hivci.org/index.html) globally, both rates of new infections and deaths due to HIV have been decreasing over the past decade [6]. However, about 6.3% of TB cases in 2022 occurred in HIV positive individuals.
People with untreated HIV infection or AIDS are at increased risk of TB disease because HIV weakens the immune system and impairs the body’s ability to fight off TB infection. HIV is the strongest risk factor for progression from TB infection to TB disease. Extrapulmonary and disseminated TB are also more common in HIV infected individuals [7] (Schutz 2010).
Among high drug-resistant countries, DRC is ranked 12th. According to the WHO, the estimate of MDR-TB/XDR-TB at the national level was 2.4% in new patients. One meta-analysis found that HIV infection raises the risk of MDR-TB, with an upward risk trend [8] (Sultana 2021).
Testing of TB disease and latent TB infection
Practices in the Democratic Republic of Congo
Testing and latent infection
In 2021, the DRC National Tuberculosis Control Program (Programme National de Lutte contre la Tuberculose, PNLT) implemented a new national strategy for diagnosing and treating LTBI across the country. Health authorities increased free active screening of TB by organizing campaigns and sending out mobile units with rapid diagnostic testing [9] (WHO 2022). However, most respondents stated that they are not aware of routine testing for TB.
TB Treatment in the Democratic Republic of Congo
Traditional medicine is still of importance for people in the DRC, with a recent study showing that 79.4% of the studied population have utilized this care system [10] (Mutombo 2022). Some respondents noted that traditional first-line treatment for cough is an herb or leaf that is boiled and then consumed as a drink. If cough and other symptoms persist, individuals will often then seek Western medical treatment.
There is a general consensus that most people trust the treatments recommended by the medical system in the DRC. However, respondents noted that general awareness of information regarding TB screening, diagnosis, and treatment as well as the level of trust in Western medicine depends on place of residence (rural versus urban) and level of education.
TB treatment is free in the DRC with approximately 2,000 centers delivering TB care for 180,000 patients in 2019 [11] (Kaswa 2021). However, out-of-pocket spending is significant even for TB patients, with over half of patients experiencing catastrophic healthcare costs [11] (Kaswa 2021).
There is a recognition that treatment for TB spans over several months, and that it is a treatable disease. Respondents also note that there is a general fear of death or serious illness from TB if untreated.
Social factors and care delivery in the Democratic Republic of Congo
There are about 18,493 physicians in the DRC, about 1.9 doctors per 10,000 inhabitants. As a comparison, the worldwide density has been 17 physicians per 10,000 inhabitants [12] (https://www.who.int/data/gho/data/themes/topics/health-workforce). However, despite the low rate of human resources, this may not be the primary barrier to care in the DRC. Clinic visitation rates are low, suggesting that other primary barriers to care, including cost, impact care-seeking behavior [13] (Nyakasane 2022).
There are several significant challenges to implementing effective TB screening in the Democratic Republic of Congo (DRC). One major issue is the reliance on traditional medicine, especially in rural and underserved areas. Many people in the DRC consult traditional healers for chronic illnesses while simultaneously using modern medical treatments. This dual approach can lead to complications, including adverse drug interactions, which can undermine the effectiveness of TB treatments. With limited access to health services in certain regions, traditional medicine fills a gap but can delay early TB detection and treatment, exacerbating the spread of the disease.
Additionally, there is a general understanding that TB is an infectious disease requiring isolation from the community and the general public. One respondent noted that in the DRC, those infected with TB were historically placed in isolation facilities which also held individuals with psychiatric disorders and other diseases. While this practice is no longer in use in the current healthcare system in the DRC, many individuals still associate TB diagnosis with forced isolation. Respondents stated that community members would generally keep their distance and avoid those who have been diagnosed with TB. Because of this, many tend to keep their diagnosis concealed from the general community and instead seek support from community leaders. Since Congolese communities are more widely dispersed in the US, it is easier to conceal TB status from the community.
Additionally, the rise of evangelical churches in the country has altered health-seeking behaviors. Christianity is the predominant religion in the DRC, with approximately 95.4% of the general population affiliated with Christian denominations [14] (USCIRF 2020). Respondents note that Congolese Christians rely heavily on prayer when dealing with sickness, and that many turn to pastors for prayer before seeking out treatment from doctors. Pastors are key figures in the community who inspire and command trust. Some individuals now seek religious validation for medical diagnoses, which can delay care for TB and other communicable diseases. Pastors may either affirm or dismiss a diagnosis, causing further delays in accessing appropriate medical care.
These cultural and religious factors, combined with inadequate health infrastructure, make it difficult to implement widespread TB screening programs, particularly in remote or underserved regions of the DRC.
Other Co-morbidities
Mpox
An outbreak of Mpox was declared in the DRC in December 2022. More recently, an outbreak with a new variant has occurred in the mining regions of South Kivu and North Kivu province with evidence of human-human transmission [15]. Currently there is evidence of transmission due to sexual contact, non-sexual contact, as well as household and healthcare facility contacts. There is an estimated fatality rate of around 5% in 2024 [15]. There is currently no data on the rate of co-infection with TB.
Malaria
The DRC is the second most malaria-affected country in the world, and accounts for 12.3% of global malaria deaths [16] (https://www.who.int/news-room/fact-sheets/detail/malaria). However, it is difficult to ascertain the prevalence of co-infections due to the lack of available diagnostic tests.
Experience with TB and barriers to care in the United States
Healthcare access for asylum seekers
In 2019, there were 61,000 Congolese nationals residing in the U.S. [17] (https://www.migrationpolicy.org/article/sub-saharan-african-immigrants-united-states-2019 ). A total of 11,400 refugees were resettled in the United States in fiscal year (FY) 2021, 43 percent of whom were from the DRC—the largest single country of origin for all refugee settlement that year [17] (https://www.migrationpolicy.org/article/sub-saharan-african-immigrants-united-states-2019). Noncitizen immigrants and asylum seekers are significantly more likely to be uninsured compared to U.S. citizens. Many Congolese asylum seekers have more limited access to private coverage, and they face eligibility restrictions for federally funded coverage. Those who are eligible for coverage also face a range of enrollment barriers including language and literacy challenges as well as complex eligibility rules. Therefore, even when LTBI screening is conducted by public health campaigns, many individuals have limited options for treatment of LTBI.
Before and upon arrival to the U.S., refugees are screened for TB. Screening with chest x-ray alone occurs for refugees abroad, prior to entering the U.S. LTBI screening consists of skin testing (such as TST or Mantoux) or IGRA (such as Quantiferon) as part of the domestic refugee screening. Repetition of testing, particularly with different modalities, can act as a source of confusion (e.g. a negative test result in their home country or refugee camp, and a positive test in the US). Consequently, when individuals are diagnosed with LTBI after they were previously told they were negative for TB (such as with a chest x-ray), this can decrease confidence in their diagnosis and the medical system.
Relevant historical factors: Colonial legacy
The DRC had been colonized in two phases: by King Leopold II of Belgium from 1885 to 1908 and by the Belgium state from 1908 to 1960. These reigns were characterized by the exploitation of precious natural resources as well as widespread human rights abuses, with longstanding effects on the country and its people.
Between the 1920s and 1950s, Western colonial governments implemented extensive medical campaigns in sub-saharan Africa, including present day DRC, aimed at managing tropical diseases such as sleeping sickness, syphilis, leprosy, yaws, and malaria [18] (Lowes and Montero 2021). During this period, millions of people were subjected to medical examinations and forced to receive injections or medications with unreliable efficacy and serious side effects.
The legacy of these campaigns can be seen in present day distrust in Western medicine, which can lead to a lower utilization of healthcare and avoidance of preventative or screening measures.
Resource Extraction
The DRC has the world’s largest cobalt reserves and the seventh-largest copper reserve. Today, cobalt is used in the manufacture of nearly all lithium-ion batteries. By 2025, demand for cobalt is expected to reach 222,000 tons, triple that of 2010. The expansion of industrial-scale cobalt and copper mines has led to the forced evictions of entire communities without just compensation or sufficient resettlement, as well as serious labor and human rights abuses.
In the DRC, cobalt is being extracted by “artisanal” miners—freelance workers who do dangerous labor for the equivalent of a few dollars a day. Miners work in grueling conditions, with many women and children digging for cobalt with their bare hands or rudimentary tools. Few safety precautions are available, few have access to masks to prevent breathing in toxic dust from cobalt [19]. https://www.amnesty.org/en/wp-content/uploads/2021/05/AFR6231832016ENGLISH.pdf
History of conflict and migration history
Political conflict has been a frequent occurrence since the country’s independence from Belgium in 1960. Since the 1990s, there has been increased civil tension and conflict brought on by attempts to overthrow the autocratic military regime that had reigned for several decades. The Rwandan genocide in 1994 also led to an influx of around 1 million refugees to the DRC [20]. (https://www.cfr.org/global-conflict-tracker/conflict/violence-democratic-republic-congo)
The First Congo War occurred in 1996-1997 with major spillovers into Sudan and Uganda which ended the autocratic regime of Mobutu Sese Seko. The Second Congo War extended from 1998 to 2003, though intermittent conflicts continue.
Since January 2013, UNHCR reports that more than 400,000 Congolese nationals have sought refuge outside DRC. Uganda, Rwanda, Tanzania, Burundi, and Angola are the primary host countries providing asylum to Congolese refugees. Most Congolese refugees have resided in refugee camps and urban centers where basic services are limited or unavailable.
Co-morbidities / Other health concerns in the community
Several respondents mentioned nutrition as a prominent concern in the Congolese community, particularly among those who recently arrived in the U.S.
The traditional Congolese diet consists of freshly grown, unprocessed foods. In the U.S., access to local, traditional ingredients is limited. Fast food or processed foods are cheaper and more readily available. The effects of these processed foods are seen in the rise in non-communicable diseases such as diabetes and heart disease in the population.
Recommended books for further reading on the history of the DRC:
Conan Doyle, A. 2023. The Crime of the Congo
Hochschild, A. 1998. King Leopold’s Ghost: A Story of Greed, Terror and Heroism in Colonial Africa.
Kara, S. 2023. Cobalt Red: How the Blood of the Congo Powers Our Lives.
Predergast, J., et al.2018. Congo Stories: Battling Five Centuries of Exploitation and Greed
Reid, S. 2023. The Lumumba Plot: The Inside Story of a CIA Assassination
Reybrouck, D. 2015. Confo: The Epic History of a People
Stearns, J. 2012. Dancing in the Glory of Monsters: The Collapse of the Congo and the Great War of Africa
Acknowledgments:
This project has been generously supported by the following funders:
TB Elimination Alliance (2023-2024 Mini-Grant Program)
Firland Foundation (2024-2025 Community Grant)
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