Limitations of Hope: Lessons Learned from the Aducanumab Controversy

A year ago, the FDA fast-tracked a brilliant new therapy for Alzherimer’s disease. Alzheimer’s is a devastating neurological illness which causes slow cognitive decline over time, characterized by beta-amyloid plaques which surround neurons in the brain. This new drug, known as aducanumab, removed the plaques linked to the neurological devastation caused by Alzheimer’s disease. The only problem? There was no proof that aducanumab actually treated Alzheimer’s.

Aducanumab looked promising at first. After all, it had been shown to remove beta amyloid plaques, a key hallmark of Alzheimer’s disease. However, in clinical trials, Aducanumab hadn’t been shown to reduce the symptoms of Alzheimer’s, nor slow down the progression of the disease significantly. In other words, the FDA had fast-tracked a therapy that wasn’t actually proven to treat Alzheimer’s.

How did this happen? Pharmaceutical companies, Alzheimer’s patients, and advocates began a lobbying process for the approval of the drug, regardless of its efficacy, and once on the market, Aducanumab was marketed for $56,000 a year. After public outrage, the price was cut down to $28,000 annually. So was the other $28,000 just an upcharge by pharmaceutical companies because they could? For a therapy that wasn’t even proven to be effective? As demonstrated by the motivation of patients to approve the drug, hope must’ve been the factor they were taxing.

And yet, what would’ve happened had the FDA chosen not to approve Aducanumab, one of the more promising therapies in recent years? The lack of significant progress in the realm of Alzheimer’s therapies is causing funding for research in the field to dry up, a problem made worse by the FDA’s refusal to approve or fast-track drugs for Alzheimer’s due to lack of data demonstrating efficacy. This is a pressing problem for Alzheimer’s patients as well, many of whom see their hopes for a better future disappearing just like the potential for new treatments.

While the final approval decision for aducanumab lies squarely on the FDA, it’s also true that the drug likely would not have been approved at all had it not been for the Alzheimer’s advocates pushing for more potential treatments. It’s easy to push blame onto patients, their families, and their caregivers, or wonder why they would push for approval for a therapy that likely wouldn’t succeed anyways. But when you’ve been fighting for so long and the road ahead just keeps getting darker, it’s difficult not to reach for that tiny spark of light, no matter how faint it is. The approval of aducanumab is a lesson both on the limitations of science and the limitations of hope.

Edited by: Olivia Ares

Graphic Designed by: Sofia DiFulvio

References

1. https://www.dukehealth.org/blog/what-you-need-know-about-aducanumab

2. https://n.neurology.org/content/98/9/e968

3. https://investors.biogen.com/news-releases/news-release-details/biogen-announces-reduced-price-aduhelmr-improve-access-patients

Black Women and Maternal Mortality

Black women are three times more likely to die from a pregnancy-related cause than white women, as reported by the Center for Disease Control. Preeclampsia and eclampsia, which are both terms for high blood pressure at different times during pregnancy, is a leading cause of death for black mothers, yet if diagnosed early, is easily manageable. According to the Population Reference Bureau, “Black women are five times more likely to die from pregnancy-related cardiomyopathy and blood pressure disorders than white women.” Why is a treatable condition causing disproportionate deaths of black mothers? Evidently, a gap exists in communication between patients in the doctors, in which a lack of an adequate diagnosis and/or treatment leads to increased rates of black maternal mortality. The following are potential factors that can contribute to higher rates of black maternal mortality.

Historically, there is a lot of preexisting mistrust in black communities surrounding medical professionals. This may date back to when medical professionals such as J. Marion Sims, who is revered as the “father of modern gynecology,” performed repeated and painful experimental surgeries on enslaved black women without administering anesthesia, and without their consent. Not only does this raise ethical questions regarding informed consent, but such examples of doctors disregarding the pain experienced by black patients further exacerbate the mistrust some members of the black community have towards medical providers. Another example of this is Serena Williams’ childbirth experience. Serena’s doctors were aware that she had a high-risk tendency for blood clots, yet when Serena experienced symptoms of an impending blood clot during childbirth, her doctors were reluctant to believe her. When she explained to them that she needed heparin, a drug that prevents blood clots, she was told, “Well, we don’t really know if that’s what you need to be on right now.” After advocating for herself repeatedly, a CT scan showed she had multiple blood clots, and she was correct about her symptoms. This illustrates a current example of doctors disregarding the pain and symptoms reported to them by a black patient, leading to distrust of the medical community.

This is worsened by the false beliefs about biological differences in the bodies of black people that are even today, held by some members of society. In a 2016 study conducted by Dr. Kelly F Hoffman, it was found that approximately half of the medical student participants had false views about biological differences between black and white patients. This included the belief that black patients have a higher pain tolerance due to having thicker skin and less sensitive nerve endings. Implications of such biases include healthcare providers not taking their patients' reported symptoms seriously. This may lead to a failure to accurately diagnose certain conditions and prescribe the correct medication to treat patients. Beliefs about black patients' tolerance for pain can also lead to medical professionals being “rougher” and more careless when treating their patients. Long term negative effects include staggering increases in black maternal mortality rates.

Another factor that can contribute to high rates of black maternal mortality is weathering. Weathering is a term coined by Dr. Arline Geronimus, a public health researcher and professor at the University of Michigan, to describe how racism, discrimination, and other lived experiences can negatively impact the health of disadvantaged people and/or populations of color. The weathering hypothesis suggests that the accumulation of stress experienced by black mothers in their lifetime can contribute negatively to maternal health and exacerbate the higher rates of poor birth outcomes for African and African American mothers.

The effects of the weathering hypothesis combined with the devaluing of pain as well as mistrust towards the medical community, are all factors that need to be considered when discussing the high rates of black maternal mortality. This is a prominent issue today, and improving the understanding of these topics within the medical community can lead to better health outcomes for black mothers worldwide.

Edited by: Danika Dai

Graphic Designed by: Alejandra Gonzalez-Acosta

References

1. “Black Women Over Three Times More Likely to Die in Pregnancy, Postpartum Than White Women, New Research Finds,” Population Reference Bureau, https://www.prb.org/resources/black-women-over-three-times-more-likely-to-die-in-pregnancy-postpartum-than-white-women-new-research-finds/.

2. “Black Women Over Three Times More Likely to Die in Pregnancy, Postpartum Than White Women, New Research Finds,” Population Reference Bureau, https://www.prb.org/resources/black-women-over-three-times-more-likely-to-die-in-pregnancy-postpartum-than-white-women-new-research-finds/.

3. “Black Women Over Three Times More Likely to Die in Pregnancy, Postpartum Than White Women, New Research Finds,” Population Reference Bureau, https://www.prb.org/resources/black-women-over-three-times-more-likely-to-die-in-pregnancy-postpartum-than-white-women-new-research-finds/.

4. “A surgeon experimented on slave women without anesthesia. Now his statues are under attack,” The Washington Post, https://www.washingtonpost.com/news/retropolis/wp/2017/08/29/a-surgeon-experimented-on-slave-women-without-anesthesia-now-his-statues-are-under-attack/.

5. “Serena Williams on her near-death experience after giving birth: No one was really listening,” Today, https://www.today.com/health/womens-health/serena-williamss-essay-black-pregnancy-rcna23328.

6. “Black Maternal Mortality: ‘It is Racism, not Race,’” Johns Hopkins Bloomberg School of Public Health, https://ccp.jhu.edu/2021/05/17/maternal-mortality-black-mamas-race-momnibus/.

7. “Eliminating Racial Disparities in Maternal and Infant Mortality,” Center for American Progress Action Fund, https://www.americanprogress.org/article/eliminating-racial-disparities-maternal-infant-mortality/.

The Underutilization of Mental Health Services Among Minority Groups

Poor mental health and mental illness have become increasingly prevalent in the United States. In 2019, about 20% of adults reported experiencing mental illness, representing over 50 million individuals.. This mental health crisis was further exacerbated by the COVID-19 pandemic, when many experienced social isolation, stress, grief, and financial struggles. WHO (World Health Organization) reported that the pandemic triggered a 25% increase in the prevalence of anxiety and depression worldwide. Among those affected, the mental health of certain racial/ethnic minority groups worsened relative to that of non-Hispanic white individuals. Specifically, there was a greater increase in mental illness reported for Black, Hispanic, and Asian adults. Furthermore, these groups are less likely to seek out mental health treatments and care. This underutilization of mental health services, especially among people of color, is a persistent and important issue in healthcare.

A potential reason for this underutilization is an individual’s perception or experience of acts of discrimination. A recent study published in Journal of Health Care for the Poor and Underserved found that discomfort in asking questions to a health care provider was associated with lower likelihood of underutilization of mental health care, indicating that positive encounters with the health care system contribute to a willingness to seek out care. In addition, researchers found that “everyday discrimination from non-health care sources, major discrimination events, and discrimination from health care sources each independently contributed to lower utilization of needed medical care after adjustment for measures of structural discrimination.” Another study published in PLOS One found that perceived discrimination in medical settings was “significantly associated with report of not having enough time with the physician and not being as involved in decision-making as desired.” Thus, it becomes clear that perceived discrimination contributes to an individual’s lack of trust in health care, leading to a underutilization of its services.

Cultural factors may also contribute to this under-utilization. One major factor is stigma against mental health. For example, mental illness is still considered taboo in many Asian cultures. As a result, many Asian Americans tend to dismiss, deny, or neglect their mental health concerns. Even further, many Asian Americans face parental pressures and pressure to live up to the “Model Minority” myth. Another factor could be language. Many Hispanic and Asian Americans do not speak English as their first language and, as a result, may experience language barriers within the healthcare system when translators or interpreter technologies are not readily available.

So how do we combat this underutilization of mental health services? First, it’s imperative that we combat provider bias. This can be done through cultural competence training, teaching effective cross-cultural communication skills and awareness. It’s also important for policymakers to take into account the cumulative effect of discrimination outside the health care system. Thus, communities can begin to change norms that sanction chronic and everyday discrimination. In terms of combating cultural influences, we can first employ more bilingual services to ensure that everyone can effectively communicate their needs. While the stigma against mental health found in many cultures is a very complex issue, we can take steps against it. As community members, we can take the time to remind our loved ones that mental care is health care and that there is nothing wrong with experiencing mental health struggles.

While the underutilization of mental health services among minority groups is a pervasive issue, it is not one without hope for improvement. By providing more culturally-sensitive information and working to ensure accessible care to all, we can help to eliminate this harmful trend.

Edited by: Elissa Gorman

Graphic Designed by: Sofia DiFulvio

References

1. https://mhanational.org/issues/state-mental-health-america

2. https://www.who.int/news/item/02-03-2022-covid-19-pandemic-triggers-25-increase-in-prevalence-of-anxiety-and-depression-worldwide

3. https://muse.jhu.edu/article/242580

4. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0215976

5. https://www.apa.org/pi/oema/resources/ethnicity-health/asian-american/article-mental-health