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How the Stigmatization of Disease Affects Care

Stigmatization of DiseasePeople often understand diseases as solely biological: an infectious pathogen harms the body and requires medical aid to defeat. However, disease also has social implications. Various social factors can impact not only someone’s likelihood of contracting a disease but also their likelihood of receiving quality medical care. One significant social implication affecting these factors is the stigmatization of disease.

Stigma, as defined by sociologist Erving Goffman, is an “attribute that is deeply discrediting.” Though we normally think of attributes like race, religion, ethnicity, sexuality and gender identity, stigma can also involve disease. The stigmatization of disease refers to the notion that a particular type of person, country or community are the carriers or source of a disease. Like all stigmatization, this involves the process of “othering,” or creating a “them” and an “us.” People attempt to keep the “us” safe by ostracizing the “them.” In the case of the stigmatization of disease, the stigmatized group becomes “them.” Here are four examples of the stigmatization of disease throughout history.

The Stigmatization of Disease: Four Examples

  1. Cholera is a bacterial disease that causes extreme dehydration and diarrhea. It is fatal without immediate treatment. The end of the 1800s saw a global cholera pandemic, with a high prevalence in Europe. This led to the United States quarantining immigrants when they arrived in the U.S., creating a dangerous association between immigrants and cholera. At the time, President Harrison declared that immigrants were “a direct menace to the public health.” This association between immigrants and disease lasted long after the threat of cholera was gone.
  2. Yellow fever is a viral infection carried by a specific species of mosquito. It causes fever, headache, nausea and, in severe cases, fatal heart and liver conditions. By 1850, yellow fever was rampant in southern American states. Cities like Charleston, Mobile and New Orleans faced the brunt of the disease. Because of tensions leading up to the Civil War, the North used the disease to attack the South. Northerners “denounced the South for its unhealthy conditions and people.” This stigmatization helped fuel the separation between “us” and “them” in the North and South. As such, it had lasting impacts on regional divides in the U.S.
  3. HIV/AIDS appeared in the United States in the 1980s. HIV is an aggressive virus that attacks people’s autoimmune system and can eventually lead AIDS. Because early cases affected gay men, doctors named the disease Gay-Related Immune Deficiency or GRID. This initial naming demonized gay men and made them appear to be the source of HIV. Later, the disease was renamed AIDS (Acquired Immunodeficiency Syndrome) when doctors realized that anyone can contract HIV. Despite this renaming, the association of gay men with HIV remains strong. Accordingly, fear and stigma continue to be a barrier to getting treatment in the U.S.
  4. COVID-19 first appeared in China in late 2019. Due to its origin, many people have engaged in racist and xenophobic attacks and discrimination against those of Asian heritage. The use of language such as the “Chinese virus” and “Wuhan virus” in the media and from political leaders has encouraged hate speech and physical attacks. In the U.K., citizens have punched and beaten Asian people. In Australia, two women beat Chinese students while yelling, “Go back to China.” In Texas, a Burmese family was attacked with a knife. This illustrates how the stigmatization of COVID-19 has resulted in extreme discrimination and violence against Asian people around the world.

How Stigma Impacts Care

As indicated above,  stigma creates barriers for stigmatized people to access quality care. Dana McLaughlin, a global health associate at the United Nations Foundation and graduate student at Johns Hopkins, elaborates on how stigma creates barriers to health. She understands stigma as having three components that can dissuade someone from seeking care and reduce the quality of care they receive:

  1. Internalized or Self-Stigma: This occurs when an individual with a disease internalizes the stigma. They may feel shameful about themselves and their condition. They might also fear telling family, friends and their communities about their condition because of possible ostracization. Either way, this internalized fear may prevent someone from seeking medical care.
  2. Public Stigma: This stigma refers to the general population’s opinions  about behaviors associated with people who have a certain disease. In other words, this is a negative cultural context that surrounds a disease. This can vary greatly between countries and cultures, so it’s important to recognize that the public stigma may not be universal.
  3. Structural Stigma: This refers to the social institutions that reflect and reinforce the stigmatization of diseases. For example, structural stigma may manifest as a lack of resources for care, like a limited number of doctors in marginalized communities. One of the most prominent manifestations of structural stigma is the criminalization of certain behaviors associated with specific diseases. With HIV, many countries criminalize sex work and intravenous drug use and stigmatize people who engage in these behaviors. This stigmatization may prevent individuals from receiving care for fear of arrest or punishment. On the other hand, stigmatized individuals may “go underground” and engage in even riskier behaviors, like sharing needles, to avoid police discovery.

Combating Stigma and Providing Care

McLaughlin explains that in the context of global health, it is important to understand the syndemic (occurring simultaneously) nature of stigma and disease. These two aspects are “correlating challenges that the global health community has to be able to respond to.”

For McLaughlin, responding to stigma requires prioritizing the needs and experiences of stigmatized people. This might mean allowing them to speak openly about the daily struggles they face due to stigma. It’s also essential that “the people who are most impacted and know the day-to-day challenges of stigma are at the root of planning.” This ensures that interventions and projects actually meet the needs of stigmatized communities. If people do need to change their behaviors, this message should come from respected community leaders. This will ensure that people trust public health advice, making them more likely to follow it.

Though the stigmatization of disease is a powerful force, viruses don’t pick and choose whom they infect. Association between certain types of people or places, behaviors and disease develop from fear and misinformation. Ultimately, it’s essential to question these associations and dismantle stigma by listening to stigmatized groups.

– Paige Wallace
Photo: Flickr

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Fighting Breast Cancer in Developing Countries

Breast Cancer in Developing CountriesWomen in developing countries lack access to safe and cost-effective breast cancer screening practices, leaving cancer frequently undetected. As a result, three times as many women in low-income, developing countries die each year due to breast cancer compared to developed countries. A team of young women from John Hopkins University is working to change this disparity and save lives through the creation of a new biopsy device.

Early Detection: A Better Chance for a Cure

Great strides have been made in the prevention and treatment of breast cancer in developed countries. More than 80 percent of women diagnosed in North America, Sweden and Japan survive. However, the situation is far different for women in the developing world. Less than 40 percent of women diagnosed in developing countries survive the disease, according to the WHO. This disparity in fatalities can be attributed to a lack of early detection. Studies in Europe and Canada found that the risk of breast cancer death decreased by more than 40 percent among women who underwent early diagnostic screening. In the U.S., data reveals the widespread use of early detection procedures and a 39 percent decrease in U.S. breast cancer fatalities after the 1990s.

Screening for Breast Cancer in Developing Countries

In 2003, the World Health Survey found that only 2.2 percent of women aged 40 to 69 years received breast cancer screening in low- to middle-income nations. More than half of women newly diagnosed with breast cancer in those nations have already progressed to stage III or IV disease. In the United States, 71.5 percent of women aged 50-74 have been screened within the past two years and over 90 percent of recently-diagnosed women have locoregional breast disease.

Why Aren’t Women Screened?

One of the main factors preventing women in low- to middle-income countries from early breast cancer detection is the high cost of screening procedures. Core needle biopsy (CNB) is a common diagnostic procedure that allows doctors to test a sample of breast tissue from the area of concern. In high-income countries, doctors use efficient and expensive disposable CNB drivers for breast biopsies. Low-income countries often cannot afford the same expense, relying instead on reusable drivers. These drivers are easily contaminated and the cleaning process is extremely time-consuming and costly, rendering breast cancer biopsies unavailable to most women in developing countries.

Ithemba: Hope for Women with Breast Cancer

A group of Johns Hopkins undergraduates won a 2019 Lemelson-MIT Student Prize for their creation of a safe, low-cost, reusable breast cancer biopsy device. After learning of the unsafe and inefficient diagnostic methods in developing countries, the team of four young women set out to create a safe and cost-effective CNB driver. Their device is named Ithemba, the Zulu word meaning “hope.” the CNB driver is centered around increasing women’s access to early breast cancer diagnosis. The device’s disposable needle contains a chamber that traps contaminants and is easily sterilized with a bleach wipe, ensuring safe reuse. Ithemba is expected to last up to 20 years before replacement is necessary.

The Johns Hopkins students have conducted over 125 stakeholder interviews. They predict that within the first five years on the market, Ithemba will impact the lives of 300,000 women in developing countries. In May of 2018, the team filed for a patent and are now searching for low-cost manufacturing methods and finalizing estimated costs.

Valerie Zawicki, one of the four undergraduates on the team, insists that the location of a woman’s home should not determine her odds of surviving cancer. The mission of Ithemba is to give all women—no matter where they live—hope with the chance to fight and survive breast cancer.

– Sarah Musick
Photo: Wikimedia

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Global Health Scholarships Fund Solutions

john_hopkins_center_for_global_health
In 1997, the U.S. Institute of Medicine identified global health as ‘health problems that are influenced by circumstances in certain countries, but have effects that could impact other nations.’ With globalization becoming such a prominent part of life economically, socially and politically, it is a clear progression that health problems will become “globalized” as well.

Global health scholarships are revolutionizing research that students can do for issues worldwide and helping to create new solutions and strategies for a variety of illnesses. There are many organizations that award global health scholarships, but three large groups are Johns Hopkins University, the American Medical Student Association, and the Bill and Melinda Gates Foundation.

Johns Hopkins University founded the Johns Hopkins Center for Global Health in 2006; it is comprised of the Bloomberg School of Public Health, the School of Medicine, and the School of Nursing.  This year, the Johns Hopkins Center for Global Health awarded eight scholarships to students to give them the resources needed for them to pursue solutions to international health issues. Current scholarships winners are hoping to use their scholarships to monitor international health policies, achieve sustainable surgical care in developing countries, conduct infrastructure research in East Africa, facilitate community health programs, train people for public health interventions to prevent the spread of infectious diseases and increase global vision health care.

The American Medical Student Association (AMSA) has a six month long program that AMSA members, who are medical, pre-medical and public health students, can apply for. The program’s purpose is to create new solutions to help the global health outcome of developing countries.  Topics covered by this program are how to meet Millennium Development Goals, what exactly global health is (epidemics, new diseases, communicable diseases), and the impact climate change and population growth have on global health.

The Bill and Melinda Gates Foundation also gives global health scholarships in the form of grants. The Gates Foundation gives billions of dollars to help fight global issues and within the last year they awarded $17,819 to The Henry M. Jackson Foundation for the Advancement of Military Medicine to support HIV research being done in Thailand. They also awarded $240,005 to the Center for Disease Control to work in India to create vaccines for enteric diseases and $356,650 to King George’s Medical University to help with pediatric pneumonia in India.

– Olivia Hadreas

Sources: Bill & Melinda Gates Foundation, Johns Hopkins, AMSA

UAE’s Donations Help Americans in Need

UAE's Donations Help Americans in NeedWhile at first glance the United Arab Emirates and Missouri may not have a lot in common, but their ties are now actually quite strong. This is due to the massive tornado that swept across the small town of Joplin in 2011.

Since 2008, the UAE has had increasing involvement in assisting American cities across the United States. When UAE ambassador to the US, Yousef al Otaiba, came to office in 2008, he immediately set a goal to change the average American’s perception of his home country. Tainted by a 2006 dispute over the UAE’s interest in taking control of American ports, a survey showed that while 30% of Americans had a negative opinion about the UAE, 70% of them did not have an opinion at all. “We had a responsibility to educate Americans about who we are,” Mr. al Otaiba stated. In this way, supporting and funding the US in a natural disaster situation demonstrates compassion and positive relations.

After the tornado destroyed Joplin, basic institutions were in need of immediate assistance. In a two-part gift, the UAE government donated $1 million to Joplin High School to help buy expensive educational resources they had not previously been able to afford: 2,200 laptops and software for the students. Despite some backlash from locals, the school board realized it could not turn down this offer, even if there was a backlash from residents who labeled the donation as “Islamic blood money”.

Around the same time, the UAE donated $5 million to rebuild Joplin’s Mercy Hospital and help start its first neonatal intensive care unit. This large donation provided the hospital with 12 beds for mothers in need of a NICU after childbirth.

The donations to Joplin were not out of the ordinary, however. Over the years money has been donated by the UAE government and through private donations directly to help maintain other hospitals such as Johns Hopkins, the Cleveland Clinic, and the Children’s National Medical Center in Washington. Money has been collected for the Baltimore Food Bank as well as the New York Police Foundation. In addition, soccer fields from Miami to Los Angeles have popped up thanks to more generous donations from the Arab country in hopes of providing low-income communities a fun and safe area for sports and recreation.

It is important to see the steps the ambassador has taken to help out people in need and to prove his country’s loyalty and desire to maintain a positive relationship with the United States. Some people may be shocked that the United States would take, let alone need these donations, but no country and no person is above aid. Poverty and disaster affect any citizen of any country. The race, religion, or nationality behind the hand reaching out to help does not matter and it is important for the world to recognize that as global citizens, it is our duty to be there for one another.

– Deena Dulgerian

Source: The Washington Post
Photo: flickr

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Johns Hopkins’ Free Course On Food Systems

Nelson Mandela said, “Education is the most powerful weapon with which you can change the world.” For those prepared and passionate to change the world with the key to success, at a time when it is increasingly harder to achieve credentials and training through limited courses and high student loans, websites such as ‘Coursera’ are becoming an effective means of sharing and teaching the information we need to know how to change the world.

For those who want to become involved in foreign policy and understand the interconnected economies of the global food system, Johns Hopkins’ Bloomberg School of Public Health recently started a 6 week long free course entitled, “An Introduction to the U.S. Food System: Perspectives from Public Health”.

Taught by Robert S. Lawrence, M.D., this introductory course on food systems discusses “activities, people and resources involved in getting food from field to plate.” Food production in the United States deals with not only the agriculture sector but our country’s economy, the population’s general well being and health, and political issues impacting all corners of the world.

Dr. Lawrence has an extensive and highly respected background in public health. He is currently a Professor of Health Policy and International health and the Center for a Livable Future, an institution which he helped establish in 1996. He has sat on multiple committees and was the director of Health Sciences at the Rockefeller Foundation. Aside from himself, the course will also feature other faculty from the Center for a Livable Future as guest lecturers.

In order to create meaningful policy changes to reduce food insecurities and global poverty, courses such as this are extremely useful in introducing to the public the various connections that must be taken into consideration before embarking to ‘change the world’.

For someone with the desire to end world hunger, it is not enough to be equipped with a fire in their heart and a sociology degree in their hand.  By having widespread familiarity or in depth knowledge across multiple sectors, economics, diet and health, and global politics in this case, it will be easier to attack the problems we want to fix.

– Deena Dulgerian

Source:coursera