Part 9: How do we Move Forward? Cervical Cancer & Minority Communities
By Alexandria Da Ponte
Over the past few weeks, we have seen that many of the racial and sexual disparities that occur in our community happen when those in positions of power do not place the patients or marginalized communities at the center of their care. We have seen that there are significant gaps in the level of care that people receive, as well as disparities between who receives access to care, who is taken seriously by medical professionals, and who can access affordable healthcare.
At GWHT, all of these issues and disparities show up as we think daily about how to eradicate cervical cancer. Over a half a million new women will get cervical cancer each year, and 1.5 million women will die prematurely over the next 5 years. We know how to eliminate cervical cancer: screen, vaccinate, and treat women before the disease grows. Why are so many women still dying from cervical cancer?
While the answer to this is nuanced between every region and individual, it is largely the same across the world — from Peru to the United States. In March 2020, a group of students from Duke University Bass Connections Pocket Colposcope team conducted interviews with women in Peru to assess the barriers to HPV detection and cervical cancer screening. The list of barriers included: cost, time of procedures, transportation, gender of medical provider, comfort, fear, pain, and social pressures. These are the same barriers that many women in the US face.
Let’s take Alabama for example, where 5.2 Black women die of cervical cancer for every 2.7 white women. A series of studies by the Human Rights Watch, determined several barriers and disparities that led to this high number of deaths. These are a few of the reasons that Black Women in Alabama cited:
Did not to go to the doctor due to a financial burden because they did not have consistent health insurance
No access to a local gynecologist.
No transportation to appointments.
Fatalistic attitudes about cancer survival or unwillingness to talk about sex and harmful social norms
Historical memory (Alabama’s Black Belt is the site of the unethical Tuskegee syphilis experiments, and federally funded coerced sterilizations of many poor, and primarily Black, women and girls.)1
We know that barriers to treatment are the same across the world, so how do we address them?
While there are several different approaches and tools that one could use to tackle cervical cancer disparities, at GWHT we have developed a model that takes both the myriad of barriers to care and the history of gynecology into account.
At the beginning of this blog series, we introduced you to Dr. Marion Sims, who made incredible medical advancements and spurred the creation of the speculum, but conducted research by testing speculum models on slave women. These women had no say over their body and were not able to provide feedback about the pain that they were feeling. In both the local and global contexts, women need to have more control over the way that their bodies are examined and the way that they are treated by healthcare professionals.
1. Women-Inspired Technology
At GWHT, we believe the first step is giving women the ability to look at their own cervix, through a woman-inspired device like the Callascope. The Callascope re-imagines the gynecology exam, removes the need for the speculum and allows women to have control over this intimate health procedure. This could be helpful and healing in communities like the Black Belt of Alabama, that have been the victims of unethical medical experiments.
2. Community Workforce Training Other barriers to care in both contexts include the lack of access to transportation and lack of financial resources. By teaching women to begin the screening process themselves, as well as training midwives and nurses in the local community, women will have the chance to identify and treat disease before it advances to cancer. We learned earlier in this series about the risks involved in childbirth and the black maternal health crisis. Just as more women are turning to doulas and non-hospital births, we can see a shift in cervical cancer care from an intrusive and costly hospital-based experience to home care.
3. Peer-to-Peer Learning Many women are afraid or embarrassed to be screened for illnesses such as HPV or cervical cancer. Additionally, many women are unaware of the importance of early screening, identification of disease, and treatment. By facilitating woman-to-woman storytelling, much like this blog series, we begin to break down this shame and stigma associated with sexual and reproductive health.
At GWHT, these three components make up a model that seeks to take a new approach to eliminating cervical cancer, the WISH Model (Women-Inspired Strategies for Health). What we are doing with innovative devices at GWHT and the WISH model is just one way of addressing these problems. As we move forward from this series and continue on in our work and research, we encourage you to continue listening and learning to issues of systemic racism and calling out racial and sexual disparities that exist in women’s health.
Continue reading the “Listening and Learning: Systemic racism, Racial and Sexual Disparities in Women’s Health” series:
Part 1: Confronting the Non-Consensual Origins of Gynecology Research
Part 2: Reclamation vs Rejection at the GYN
Part 3: One Size Does NOT Fit All
Part 4: Historical Power Imbalances in Puerto Rican Healthcare and How they Concern Biomedical Engineers
Part 5: Moving Beyond the Movement
Part 6: Who Gets Healthcare and Who Does Not?
Part 7: Opening My Eyes
Part 8: Say it Louder: That was so Weird!