From my birth until I was old enough to stay home alone, my grandmother babysat my younger sister and me when our parents were at work, and we lovingly called her our Nana. Nana was an excellent babysitter given her experience as an elementary school teacher for most of her life. I always thought she had the mind of a child; she knew how to think like us and knew how to play games with us. She would always let me and my sister win; often resulting in a fight between us. Eventually we got too old to be babysat anymore and these childhood events turned into memories that I still cherish today. But Nana doesn’t have these same memories. She doesn’t even know who my sister or I am. For she has Alzheimer’s Disease.

Today, Alzheimer’s Disease is the sixth highest cause of death in the United States with over 100,000 deaths in 2019 alone.1 10% of men and 20% of women in the U.S. will show symptoms of Alzheimer’s sometime in their life.2 Alzheimer’s is not only common, but it is also becoming more prevalent: “Between 2000 and 2017, deaths resulting from stroke, heart disease, and prostate cancer decreased, whereas reported deaths from AD increased 145%.”3 Additionally, the rate of Alzheimer’s is projected to continue to increase as long as there is no cure.4 This raises the question: Why is there no cure for Alzheimer’s?

As I began my research, I quickly realized that Alzheimer’s was much more complicated than I first thought, with many different stages and conditions. Alzheimer’s is a degenerative brain disease in which someone’s neurons become damaged over time.5 There are three stages to Alzheimer’s: the pre-symptomatic stage, where one may be diagnosed with the disease but has no visible symptoms.6 My Nana was not diagnosed at this stage, though doctors were concerned about the possibility of dementia. The second stage is mild short-term memory loss.7 During this stage Nana would ask me what school I go to several times over the course of a day; and when we would invite her over to our house, she would frequently ask us to let her call her mom to pick her up, despite her mother dying nearly 40 years ago—from the exact same disease. The third and final stage is severe dementia, ranging from being unable to brush one’s teeth to being in a bed-bound vegetative state.8 Over the last six months, Nana has transitioned into this third stage, and she speaks in word salad: “extremely disorganized speech … manifested as a symptom of a mental disorder.”9 She always picks little bits of lint off of mine and her clothing and refers to them as “the people.” Though she isn’t sure of what to do with the lint, as she believes “the people” are important.

Given how common and awful it is, why has there not been a cure for it yet? The simple answer is that it is a complicated disease and scientists do not know how to effectively allocate intellectual and financial resources to Alzheimer’s research.10 Research for Alzheimer’s is a very expensive endeavor as testing on patients can be a lengthy process; and without knowing the root causes of the disease it is very difficult to understand what types of experiments and research needs to be carried out to achieve results.11 The degeneration of neurons in one’s brain is irreversible, and currently, the only way to “fight the dementia epidemic”12 is to begin preventative care earlier in life.13 The Dementia specialist we worked with when Nana’s symptoms began told us that we can lower our risk of getting dementia later in life if we eat healthy, exercise, and brush our teeth every day. These suggestions certainly could work to lower our risk; however, this isn’t a foolproof solution as plenty of otherwise healthy people get Alzheimer’s.

The more technical reason for why a cure has not been discovered yet is because of how money is spent on research and how the research must be conducted. For decades, Alzheimer’s research has focused on the effects of amyloid-β protein in the body.14 Scientists long believed that the buildup of the amyloid protein was the root cause of Alzheimer’s. However, research conducted in the last 5 years has found that “Many drugs that target amyloid-β in Alzheimer’s disease have failed to demonstrate clinical efficacy.”15 This demonstrates that the “amyloid hypothesis” might not be the root cause of Alzheimer’s. This is problematic because the process of research and doing clinical trials is extremely slow. Before a drug can make it to clinical trials, “scientists research ideas in what is called the discovery phase. This step can take from three to six years.”16 Then, if the drug is approved it can take between six and seven years to complete the trials.17 Due to the failures of clinical trials against the buildup of amyloid-β protein, many major pharmaceutical companies have abandoned Alzheimer’s research as they no longer see it as worth the expense.18 It will take a long time and cost a lot of money for researchers to move away from the “amyloid hypothesis” and hopefully find the true cause which could hopefully one day lead to a potential cure.

As I researched Alzheimer’s, I learned that it might be more common in the U.S. than in other countries. Alzheimer’s exists among 10-20% of the population in the U.S.19 compared to only 2.4% in Africa.20 Do Africans have the cure? Do they have a lifestyle that somehow prevents Alzheimer’s? According to the Alzheimer’s Association, dementia is most common in Finland, United States, Iceland, Sweden, Canada, and Norway.21 These are all developed countries with highly sophisticated and well-funded medical institutions.22

So why was this disease affecting wealthier countries with more developed institutions rather than poorer countries that don’t have the same access to medical care as we do? According to The National Library of Medicine, countries least impacted by Alzheimer’s are developing countries in Africa.23 I thought it might be an ethnic issue or genetics that is preventative against Alzheimer’s. However, in the U.S. Alzheimer’s is more common among African Americans, not less. Scientists have not yet found the cause of the higher rates, though some speculate it could be due to genetics specific to the black population.24 So it is likely that genetics are not the reason for less Alzheimer’s in Africa.

If lower rates of Alzheimer’s can’t be explained by genetics, perhaps the lower rates are due to less testing and therefore a lower rate of diagnosis. According to The African Journal of Medicine and Medical Science: “limitations with many African Studies include low quality of methods used, types of study settings, and limited coverage of the different African regions.”25 Due to less funding for Alzheimer’s research in Africa, most of the continent doesn’t have access to testing resources; the tests that are provided are conducted without much regard to quality. Could this be our answer? Are there more diagnosed cases in developed countries purely because of better access to medical institutions and research? My Nana was diagnosed by an Alzheimer’s specialist at the hospital after performing a test on her short-term memory. Developing countries do not have the resources to conduct an accurate study of the rates of Alzheimer’s as developed countries like the U.S. do.26 While this explanation is certainly a factor for lower rates, it is far more complicated than that.

Maybe African countries don’t see Alzheimer’s as much as developed countries because Africans are not living to reach the age where symptoms begin to show. According to the National Institute on Aging: “for most people with Alzheimer’s… symptoms first appear in their mid-60s.”27 This is not particularly shocking because we first noticed symptoms of memory loss in my Nana when she was in her mid 60s. However, according to the United Nations, the current life expectancy for an African is only 63 years.28 Africans are not even living long enough to experience the symptoms and therefore Alzheimer’s is never detected. Was the fact that my Nana had Alzheimer’s a result of the privileged world? Children in Africa don’t get to share childhood memories with a loving Nana as I did because their grandparents aren’t even reaching that grandparent age. I remember walking to the park with my Nana every weekend in the summer when the weather was warm; she always told me at every street in our quiet neighborhood to look both ways and don’t run across the street despite there never being any cars; and she would push me on the swing and help me up the climbing wall. African children miss these childhood experiences because they didn’t get to grow up with their Nana. Clearly there is not only a difference in medical care, but a significant difference in life experiences.

So why is the life expectancy so much lower in Africa compared to developed nations? Those living in Sub-Saharan Africa are subject to several illnesses which kill a large portion of their population.29 These same diseases are either extremely rare or well treated and curable in developed countries. According to health care research expert John Elfien, the top ten highest causes of death in Africa include neonatal conditions, malaria, tuberculosis, and HIV/AIDS.30 These diseases do not appear on the top ten causes of death worldwide.31 According to the World Health Organization, “the [African] Region was home to 95% of all malaria cases and 96% of deaths. Children under 5 years of age accounted for about 80% of all malaria deaths in the Region.”32 If western Europe accounted for 95% of all Malaria deaths, a vaccine would be made available for the entire continent within a matter of years. Why were these deadly diseases left ravaging the African continent while developed countries did little to deal with them?

Malaria is a disease that primarily affects people in the Sub-Saharan African region and is taken far less seriously than white-affecting diseases.33 Malaria is caused by parasites, which transfer from infected mosquitoes to humans and “[t]he highest transmission is found in Africa South of the Sahara.”34 According to the National Institute of Health, $1.6 billion was spent on diabetes research in 2020, $2.8 billion on Alzheimer’s research, and $7 billion on cancer in the U.S. alone. Whereas only $64 million was spent on Malaria research in the U.S.35 These other diseases are incredibly important and do deserve sufficient funding, but why is financial allocation so lopsided? Malaria kills over 600,000 people a year and 96% are from Africa.36 A 2011 report estimates an additional $2 billion annual global funding is required to eliminate malaria by 2050.37 When a close friend of mine traveled to Kenya, he had to get vaccinated against several diseases that he could encounter in Africa; including a prescription medication against malaria. However, most people living in Africa do not have access to this medicine as there isn’t enough funding for it.

Why are cures for Malaria—and several other African diseases—not nearly as well funded as cures for the many diseases that affect the white world? The answer lies in centuries of institutional racism. In her book, Institutional Racism, professor and scholar Shirley Better defines institutional racism as: “those patterns, procedures, practices, and policies which operate within social institutions so as to consistently penalize, disadvantage, and exploit individuals who are members of non-white groups.”38 Better describes institutional racism as something where large institutions—like major medical research companies—apply their resources to disadvantage black people in Africa and around the world. The medical institutions responsible for disease research are funded and run by federal governments, industries, and individual donors.39 Better would describe these institutions and the individuals running them as having “[t]he presumption of white supremacy,”40 “[a]cceptance of social and economic inequality,”41 and/or “negative stereotypes of ‘people of color.’”42 These beliefs result in “neglect” and “isolation”43 of other racial groups. This is what we see manifested in the medical world when financial resources are distributed towards a seemingly futile effort to cure diseases like Alzheimer’s when that same amount can go much further in curing a greater number of disadvantaged people. This misallocation of medical resources “neglect[s]” and “isolat[es]”44 the African population while “white diseases” including Alzheimer’s receive extensive funding.45

The profit motive is also a major factor in how pharmaceutical companies decide how disease research funding is allocated. The principal investors in medical research are the federal government in the early stages of disease research and discovery and the later stages are primarily funded by private venture capitalists or “big pharma” companies.46 So when there appears to be a medical breakthrough approaching—like the amyloid-β protein drug— big pharma companies step in and fund most of the development.47 But when research falls flat, big pharma companies look to other sources for profit.48 This is exactly what happened to the pharmaceutical companies funding Alzheimer’s research in the last decade.49 However, big pharma companies don’t move funding to unprofitable diseases like Sickle Cell Disease—another disease that primarily affects black people.50

Pharmaceutical companies rarely fund research for Sickle Cell Disease (SCD) because it is unprofitable. Instead, they fund profitable “white” diseases like Cystic Fibrosis (CF).51 Both diseases dramatically shorten the lifespan of a patient52 and both deserve funding. However, according to a study conducted in 2020, “SCD is 3 times as prevalent as CF. In addition, the US birth rate of SCD is 1 in 365 black individuals while the US birth rate of CF is 1 in 2500 white individuals.”53 Clearly, SCD affects a large portion of the U.S. population, but this study doesn’t account for the even larger population of Africans who suffer from the disease.54 That same study also found that big pharma companies were spending over 75 times more on CF research than SCD research.55 It concluded that “disparities in funding between SCD and CF may be associated with decreased research productivity and novel drug development for SCD.”56 Big pharma companies are moving away from SCD because it is not productive, and therefore not profitable. By ignoring the needs of SCD patients around the globe, Shirley Better would argue that the big pharma companies are “accept[ing the reality] of social and economic inequality”57 and are thus promoting institutional racism in the name of profit over people. This not only explains why big pharma companies are moving away from SCD, but also why they are moving away from Alzheimer’s research.

Has a misallocation of medical resources by the federal government and private sector businesses led to a waste of money and research? While it does seem like there was little to no progress made during the testing of the “amyloid hypothesis,” these trials provided new opportunities to explore other theories about the cause of Alzheimer’s. But one must wonder, is it really worth the expense; should more money be allocated to other research instead? Am I being selfish by wanting my Nana to be cured of her disease at the expense of other more disadvantaged people? My Nana turns 74 this September, and with the current pace of progress on Alzheimer’s research she will be long gone before a medical breakthrough is discovered that leads to a cure. More resources should be spent on those who don’t have the privilege of living past 65, and especially those who die before they reach adulthood. It’s easy to want the government and pharmaceutical companies to fund research for Alzheimer’s, but maybe it is better if we allocated our intellectual and financial resources more efficiently with the global welfare in mind.

Bibliography

Notes

1. Jiaquan Xu et al., “Deaths: Final Data for 2019,” Centers for Disease Control and Prevention, July 26, 2021, https://stacks.cdc.gov/view/cdc/106058, 46.

2. “2019 Alzheimer’s Disease Facts and Fig. s,” Alzheimer’s & Dementia 15, no. 3 (2019), https://doi.org/10.1016/j.jalz.2019.01.010.

3. “2019 Alzheimer’s Disease Facts and Fig. s.”

4. “2019 Alzheimer’s Disease Facts and Fig. s.”

5. “2019 Alzheimer’s Disease Facts and Fig. s.”

6. “2019 Alzheimer’s Disease Facts and Fig. s.”

7. “2019 Alzheimer’s Disease Facts and Fig. s.”

8. “2019 Alzheimer’s Disease Facts and Fig. s.”

9. “Word Salad Definition & Meaning,” Merriam-Webster (Merriam-Webster), accessed May 2, 2022, https://www.merriam-webster.com/dictionary/word%20salad.

10. Amos D. Korczyn, “Why Have We Failed to Cure Alzheimer’s Disease?,” Journal of Alzheimer’s Disease 29, no. 2 (2012), https://doi.org/10.3233/jad-2011-110359.

11. “Estimates of Funding for Various Research, Condition, and Disease Categories,” National Institutes of Health (U.S. Department of Health and Human Services, June 25, 2021), https://report.nih.gov/funding/categorical-spending#/.

12. Amos D. Korczyn, “Why Have We Failed…”

13. Amos D. Korczyn, “Why Have We Failed…”

14. Eric Karran and Bart De Strooper, “The Amyloid Hypothesis in Alzheimer Disease: New Insights from New Therapeutics,” Nature Reviews Drug Discovery 21, no. 4 (2022): pp. 306-318, https://doi.org/10.1038/s41573-022-00391-w.

15. Eric Karran, “The Amyloid Hypothesis in Alzheimer Disease.”

16. Eric Karran, “The Amyloid Hypothesis in Alzheimer Disease.”

17. Eric Karran, “The Amyloid Hypothesis in Alzheimer Disease.”

18. Eric Karran, “The Amyloid Hypothesis in Alzheimer Disease.”

19. “2019 Alzheimer’s Disease Facts and Fig. s,”

20. Rhiannon George-Carey et al., “An Estimate of the Prevalence of Dementia in Africa: A Systematic Analysis,” Journal of Global Health 2, no. 2 (2012), https://doi.org/10.7189/jogh.02.020401.

21. “2019 Alzheimer’s Disease Facts and Fig. s.”

22. Elliot Davis, “Countries with the Best Public Health Care Systems – US News & World Report,” U.S. News, April 13, 2021, https://www.usnews.com/news/best-countries/slideshows/countries-with-the-most-well-developed-public-health-care-system.

23. Liara Rizzi, Idiane Rosset, and Matheus Roriz-Cruz, “Global Epidemiology of Dementia: Alzheimer’s and Vascular Types,” BioMed Research International 2014 (2014): 1-8, https://doi.org/10.1155/2014/908915.

24. “Black Americans and Alzheimer’s,” Alzheimer’s Disease and Dementia (Alzheimer’s Association, 2021), https://www.alz.org/help-support/resources/black-americans-and-alzheimers.

25. Rufus O. Akinyemi et al., “Dementia in Africa: Current Evidence, Knowledge Gaps, and Future Directions,” Alzheimer’s & Dementia18, no. 4 (2021): 790-809, https://doi.org/10.1002/alz.12432.

26. Rufus O. Akinyemi et al., “Dementia in Africa.”

27. “What Are the Signs of Alzheimer’s Disease?,” National Institute on Aging (U.S. Department of Health and Human Services, 2017), https://www.nia.nih.gov/health/what-are-signs-alzheimers-disease#:~:text=Damage%20occurring%20in%20the%20brain,person’s%2030s%20and%20mid%2D60s.

28. “Life Expectancy at Birth – Both Sexes,” Department of Economic and Social Affairs (United Nations, 2020), https://population.un.org/wpp/Download/Standard/Mortality/.

29. John Elflein, “Leading Ten Causes of Death in Africa 2019,” Statista, March 11, 2022, https://www.statista.com/statistics/1029287/top-ten-causes-of-death-in-africa/.

30. John Elflein, “Leading Ten Causes of Death in Africa 2019.”

31. John Elflein, “Leading Ten Causes of Death in Africa 2019.”

32. “Fact Sheet about Malaria,” World Health Organization (World Health Organization, April 6, 2022), https://www.who.int/news-room/fact-sheets/detail/malaria.

33. “CDC – Malaria – about Malaria – Where Malaria Occurs,” Centers for Disease Control and Prevention (Centers for Disease Control and Prevention, April 9, 2020), https://www.cdc.gov/malaria/about/distribution.html.

34. “CDC – Malaria – about Malaria – Where Malaria Occurs.”

35. “Estimates of Funding for Various Research, Condition, and Disease Categories,” National Institutes of Health (U.S. Department of Health and Human Services, June 25, 2021), https://report.nih.gov/funding/categorical-spending#/.

36. Hannah Ritchie and Max Roser, “Causes of Death,” Our World in Data, February 14, 2018, https://ourworldindata.org/causes-of-death.

37. Michael T White et al., “Costs and Cost-Effectiveness of Malaria Control Interventions – A Systematic Review,” Malaria Journal 10, no. 1 (March 2011), https://doi.org/10.1186/1475-2875-10-337.

38. Shirley Jean Better, Institutional Racism: A Primer on Theory and Strategies for Social Change (Lanham, Maryland: Rowman & Littlefield Publishers, 2008), 11.

39. “Medical Research: Sustainable Funding for Tomorrow’s Cures,” Association of American Medical Colleges, 2020, https://students-residents.aamc.org/advocacy/medical-research-sustainable-funding-tomorrows-cures#:~:text=Medical%20research%20is%20funded%20by,Institutes%20of%20Health%20(NIH).

40. Shirley Jean Better, Institutional Racism, 12.

41. Shirley Jean Better, Institutional Racism, 12.

42. Shirley Jean Better, Institutional Racism, 12.

43. Shirley Jean Better, Institutional Racism, 12.

44. Shirley Jean Better, Institutional Racism, 12.

45. “Estimates of Funding for Various Research, Condition, and Disease Categories,” National Institutes of Health (U.S. Department of Health and Human Services, June 25, 2021), https://report.nih.gov/funding/categorical-spending#/.

46. Theresa M. Wizemann, Sally Robinson, and Robert B. Giffin, Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies: Workshop Summary (Washington, D.C.: National Academies Press, 2009), 25-26.

47. Theresa M. Wizemann, Breakthrough Business Models, 25-26.

48. Clara Rodríguez Fernández, “As Big Pharma Abandons Neuroscience, Can Biotech Provide Answers?,” Labiotech.eu, February 10, 2021, https://www.labiotech.eu/in-depth/neuroscience-big-pharma-biotech/#:~:text=Over%20the%20last%20decade%2C%20big,this%20area%20in%20recent%20years.

49. Clara Rodríguez Fernández, “As Big Pharma Abandons Neuroscience”

50. Gianna Melillo, “Study Finds Funding Disparities between Sickle Cell Disease, Cystic Fibrosis,” AJMC, July 30, 2020, https://www.ajmc.com/view/study-finds-funding-disparities-between-sickle-cell-disease-cystic-fibrosis.

51. Gianna Melillo, “Study Finds Funding Disparities.”

52. Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated with Research Productivity,” JAMA Network Open 3, no. 3 (2020), https://doi.org/10.1001/jamanetworkopen.2020.1737.

53. Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research.”

54. Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research.”

55. Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research.”

56. Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research.”

57. Shirley Jean Better, Institutional Racism, 12