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This website intends to bring awareness about immunodeficiency and its consequences in a global context.  In it, you can find the answers to all your questions about this chronic conditions. You will learn how it prevents diagnosed patients from living a normal, fulfilling life, and how inequality further aggravates their problems and prevents them from accessing proper healthcare venues. Nevertheless, you will also learn about global efforts to bring quality healthcare to these patients, and what public and provate organizations can do to improve their condition.

What is an immunodeficiency?

The inability of the immune system to combat infectious diseases, which increases the lethality of innocuous illnesses.

What causes immunodeficiency?

 Immunodeficiency conditions are classified by their cause:

Primary Immunodeficiency (PI) is caused by inheritable genetic conditions. There are several diagnoses falling under this category, including X-linked agammaglobulinemia and severe combined immunodeficiency (SCID), the last of which was popularized by David Better, who lived up to the age of 12 within the confines of a sterilized chamber in Texas Children's Hospital.

Secondary or acquired immunodeficiency is not inheritable and is caused by infectious illnesses or other malingnat conditions arising throughout the patient's lives. Certain types of cancers, AIDS/HIV, and malnutrition are common causes of secondary immunodeficiency.

How many people are impacted by it?

 In the United States alone, more than 250,000 have been diagnosed with primary immunodeficiency (PI). In addition,  1.2 million persons are living with HIV/AIDS.  Meanwhile, 14.3 million people of any age lived in food-insecure households. These statistics imply that the number of Americans at risk of immunodeficiency - or already immunosuppressed-  stands at at least 15.7 million!

The United  Nations Development programme estimates that 13.1% of South Africans are HIV/AIDS positive. Similarly, 20.4% of Batswana have contracted this disease. Nevertheless, eSwatini (Swaziland) has the greatest prevalence rate in the world at 27%. Statistics on PI and other risk factors leading to immunodeficiency are unreliable for countries in the Sub-Saharan Africa.

Nevertheless, patients  of immunodeficiency can be found everywhere around the world. Their health outcomes, however, are deeply dependent on the healthcare infraestructure available to them and their socioeconomic conditions.

"We were fortunate that NASA offered to construct a sterile space for David to live, inside a plastic "bubble" that was set up for him both at the hospital and in our home in a suburb of Houston. They also built a spacesuit for David that is now part of the Smithsonian’s collection. He grew up surrounded by media attention but never being able to be touched by those who loved him"

- Carol Ann Demaret, on her son David Vetter, who died in 1984 from complications arising from SCID
 

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"At that moment I knew I had lost my job and I almost went mad, thinking what am I going to tell my wife?"

- Talent, on his HIV diagnosis
 

"At the start of my diagnosis I was put on prophylactic antibiotics to try and minimise the amount of infections I was getting but unfortunately, I was still getting quite a number of infections. When I was around 15, I was started on subcutaneous immunoglobulin infusions a nurse came to my house and trained me up on how to give myself the infusions weekly. It took me about 4 sessions to be fully competent on how to do my own infusions, but I felt like the treatment gave me some control over the disease and was flexible around school, so I was able to do the treatment on an evening or weekend."

- Kayleigh on her PI
 

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"I was first put on immunoglobulin at the age of two, and the number of infections I had reduced. I was then taken off the immunoglobulin aged six to see what happened. When my levels dropped and I suffered from continuous infections the diagnosis of CVID was made and I was soon back on regular infusions. Being so young, I do not really remember how I felt about the diagnosis but I do remember not enjoying sitting in hospital with a needle in my arm. For my parents a confirmed diagnosis was a relief, although the next task was ensuring I stayed as well as possible."

- Hannah on her Common Variable Immunodeficieny (CVID) diagnosis.
 

"If I am struggling, feeling low or suffering from an infection, my friends are there to support me. However, as helpful as this is, I would always recommend you get in touch with your immunology team, because they are the experts."

- Allison on her Common Variable Immunodeficieny (CVID) diagnosis.
 

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Are there any obstacles preventing succesful treatment?

Persons suffering from immunodeficiency are largely dependent on the healthcare services available to them and their earnings, at least in countries where adequate welfare safety nets do not exist.

With more than half of the world population living on less than $6 dollars a day, it is difficult for patients in underdeveloped countries - and the poor in industrialized societies- to obtain proper care.  The effect that socioeconomic inequality has on healthcare outcomes is substantial.  For example, more than half of all AIDS patients in Africa (which total 23.8 million) cannot afford their medication, and are thus expected to die within five years.

Similar outcomes are supposed to be observed for African patients with PI syndromes, according to epidemiologists, since there are no reliable statistics about PI in most African countries. However, the overarching conclusion is clear; healthcare outcomes for immunodeficient patients are gravely affected by economic inequality.

 

  • The map below shows physicians per 1,000 people, as of 2010.

  • Click on the " legend " button on the top left corner to show the legend

  • You can also click the "+" and "-" buttons to adjust zoom settings

 

  • The map below shows GDP per capita, as of 2010.

  • Click on the " Legend " button on the top left corner to show the legend

  • You can also click the "+" and "-" buttons to adjust zoom settings

Further analysis sheds some light about the relationship between socioeconomic inequality and healthcare outcomes

 

The graph below shows the relationshp between government expenditure per capita on healthcare (in 2018 USD) and percentage  of the population that is immunodeficient for any reason, in 16 countries.

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The box below shows that this relationship is not statistically significant. However, since it has been qualitatively established by academic literature that healthcare outcomes for immunodeficient patients improve with greater resources available to them, this result indicates that there is not enough quantitative data to portray the gravity of immunodeficiency in countries. In fact, the data used to calculate total immunodeficiency prevalence used statistics from different years, due to the unavailability of chronologically consistent data on AIDS/HIV, PI disorders, cancer prevalence, and other risk factors.

Moreover, this analysis rather indicates the precarious state in which knowledge about immunodeficiy is. More research on this topic should be encourage for the benefit of those without access to proper healthcare.

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What can be done about immunodeficiency?

  • Click on the map below to learn more about the history of certain immunodeficiency conditions, inspiring stories, and global efforts to combat immunodeficiency.

The fight against immunodepression is constantly evolving as new discoveries in medicine, biology, and biotechnology make possible novel treatments. Hopefully, this page brought awareness about this group of conditions and the experiences of patients, their families, and healthcare professionals. I invite you to contribute by donating to charitable organizations, promoting awareness, or simply referring this website to another person.

                                                                                                                             - Angel Vasquez.

Sources:

Pearson, Christine M., and Judith A. Clair. 1998. “Reframing Crisis Management.” The Academy of Management Review 23(1): 59–76. doi: 10.2307/259099.

“Policy Responses to Immunosuppession” https://www.imf.org/en/Topics/imf-and-covid19/Policy-Responses-to-COVID-19 (October 8, 2020).

Randolph, Haley E., and Luis B. Barreiro. 2020. “Herd Immunity:.” Immunity 52(5): 737–41. doi: 10.1016/j.immuni.2020.04.012.

Ren, Xuefei. 2020.  Eurasian Geography and Economics: 1–12. doi: 10.1080/15387216.2020.1762103.

Steiner, Nils D. 2014. “Sample Cases in Combined Immunity” Journal of Comparative Policy Analysis: Research and Practice 18(4): 329–49. doi: 10.1080/13876988.2013.877676.

“Physicians per 1,000 persons.” 2020. https://globalresponseindex.foreignpolicy.com/ (October 8, 2020).

Thu, Tran Phuoc Bao, Pham Nguyen Hong Ngoc, Nguyen Minh Hai, and Le Anh Tuan. 2020. “ Never mind my life: A testimony” Science of The Total Environment 742: 140430. doi: 10.1016/j.scitotenv.2020.140430.

Wieler, Lothar. 2020. “Germany's Strong Enabling Environment.” https://ourworldindata.org/covid-exemplar-germany (September 8, 2020).

Wike, Richard, Janell Fetterolf, and Mara Mordecai. 2020. “Coping with autoimmune disorders.” https://www.pewresearch.org/global/2020/09/15/us-image-plummets-internationally-as-most-say-country-has-handled-coronavirus-badly/ (November 1, 2020).

Yakunina, R.p., and G.a. Bychkov. 2015. “Correlation Analysis of the Components of the Human Wellness Index Across Countries.” Procedia Economics and Finance 24: 766–71. doi: 10.1016/s2212-5671(15)00692-

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