Part 6: Who Gets Healthcare and Who Does Not?
By Alexandria Da Ponte
As a staff member at the Center for Global Women’s Health Technologies, I have the unique opportunity of being on a team of engineers, healthcare professionals and innovators as we work towards empowering women and eradicating cervical cancer. Our team recognizes that women from marginalized, rural, and socio-economically disadvantaged communities, especially in our partner areas of Peru and Kenya, have to travel great distances to access services for cervical cancer prevention. Even if they are able to travel to access medical services, women may not always get effective care. These questions of who gets access to medical attention? Who gets the best care? Who gets treatment in time?- can also be tied back to a question that was brought up in our blog post last week. “How are so many women still dying from having babies?”
High numbers of black women dying from childbirth, racial disparities in cervical cancer and the percentage of deaths in marginalized communities from COVID-19 are all chapters in the seemingly never-ending saga of racial disparities in healthcare.
COVID-19 has revived a conversation around who receives access to healthcare and who is excluded. I use the word, ‘revived’, because this conversation about lack of access to affordable healthcare has been an emergency for years, yet it is one that many countries have not taken seriously.
Prior to the pandemic, data showed that “30 million people remain uninsured. About half of those 30 million are people of color.” (1) This does not account for the more than 20 million people who have become unemployed during the pandemic. (2)
It is common for Americans to stereotype people who are uninsured as, “ lazy, taking advantage of the system, and spending taxpayer money on new iPhones and other frivolities.” There is a commonly held belief that “it is their fault that they are poor.” (3)
This question of who receives access to healthcare and who does not is personal for me, as I spent years being under-insured and at times uninsured. I am an example that being uninsured does not come from falling into a box of stereotypes; but instead all of us who live in comfortable bubbles are at risk for losing our healthcare coverage at any moment.
As a 20 year old, my family’s lifestyle and life as we knew it changed drastically when my dad, a healthy 50 year old, died suddenly from a brain aneurysm. My mom, a stay at home parent, went back to work for the first time in eighteen years, but because she only worked part-time, she was not insured. As a result of no longer having a parent with insurance coverage to fall under, like most people do until they turn 26, I spent many years of my life being uninsured. The only insurance I had covered emergency care, because my school required every student to have some type of insurance before being allowed on campus. As a senior in college, trying to apply for grad school while grieving the death of my father, I should not have also been given the additional stress of finding access to affordable healthcare. But for years, this became my story.
When I would occasionally become sick, I would have to spend time researching “affordable clinics” and on the phone calling doctors offices to find out about their policies and co-pay charges, in order to receive proper care that would also not drain my meager student budget. I spent months using home remedies for my eczema outbreaks because I knew that I would not be able to afford a dermatologist bill. I would pay attention when new dentist offices would open up as I knew they would run promotions for routine cleanings, look out for coupons for vision exams, order my glasses and contacts from discount websites. Anything to save money because I did not have access to a plethora of healthcare options.
I am fortunate that lack of access to affordable healthcare for years was not a dire emergency for me, as I did not suffer from any major illness or medical emergencies. However, my own mother is still paying off a bill over $1,000 just for one urgent care visit (due to a migrane) where she was not even given any medication.
”As the pandemic continues to ravage through the world and disproportionately affects black, brown and indigenous people, I am deeply concerned for the uninsured people for whom lack of access to healthcare will turn into a life or death matter.
Lack of access to healthcare is a public health emergency for all and especially marginalized communities during COVID-19. The New England Journal of Medicine (4) points out that much of the advice around how to address safety concerns during the pandemic excludes marginalized poor minority and immigrant communities. For instance, many minorities, “fill frontline jobs that cannot be done remotely. These jobs — in transportation, emergency response, health care, and agriculture — are essential for a functional society, but pay near the minimum wage and do not compensate workers for the risks they incur.”
“What about the affordable health care act?”, some may wonder.
In a series on Race in American Public Policy, The Brookings Institution (5) reported, “Fourteen states have refused to expand Medicaid under the ACA, which is one of the reasons why people of color are disproportionately likely to be uninsured today. This includes some of the states with the largest populations of Black Americans.”
The lack of affordable healthcare is not just a Southern USA problem. In New York City, Black women are 8–12 times more likely to die during childbirth and Black infants are 3 times more likely to die than white babies. Despite this disparity, in April, Gov. Andrew M. Cuomo signed a bill that includes $138 million in Medicaid cuts to the city’s public hospitals, which mostly serve Black and Latino residents (6).
At GWHT we are constantly thinking about how to provide affordable and convenient access to cervical cancer screening in lower and middle income countries. But I also wonder what about the women right here in America who are uninsured and, as a result, have not had access to a pap smear exam in years?
While there are programs such as The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) that provides breast and cervical cancer early detection testing to low-income, underserved, under-insured, and uninsured women in the US; there are still barriers to women accessing these resources.
When we think back to the history of gynecology research, rooted in slavery and mistreatment of marginalized women, we have to realize that having a program for testing is not enough if there is not education about the importance of regular screenings and a removal of the barriers of fear and racism around gynecology.
The American Cancer Association reminds us that many women will still have problems getting breast and cervical cancer screening because of things like:
Living far away from needed health care services
Problems understanding cancer screening and how it applies to them
Not having a health care provider who recommends screening
Inconvenient access to screening services
We also see issues with many states lacking proper resources to run these programs. When I tried to access the Breast and Cervical Cancer screening program website, I was led to a link that does not even work. How are people like my mother, who falls into risk categories for cervical cancer, supposed to find affordable resources when the phone number for a preventative program just constantly rings and the website is invalid?
COVID-19, a global public health emergency, is reviving the same set of questions. While most states have options for free COVID-19 testing, there are still questions to consider about potential barriers:
How will someone without a car travel safely to a testing site?
How will someone who does not speak English be treated when they are not allowed to bring a family member to help with a language barrier?
Are people even aware that they can receive free testing?
What happens when someone is positive for COVID-19, spends weeks in the hospital, and then receives an enormous medical bill?
When I think about my own family’s experience of being uninsured in light of the current pandemic, especially given the way that COVID-19 has been disproportionately impacting minority communities, I think about how terrifying it would be for an uninsured person like my own mother to be diagnosed with COVID-19.
This issue of racial and financial disparities and the underlying question of who gets to receive healthcare and who does not, is not a new question. But when will this question become obsolete?
Dr. Michele K. Evans of NIH says, “The disproportionate effects of the COVID-19 pandemic on African Americans, Latinx Americans, and Native Americans is not unforeseen. Inequities in health, health care access, and quality of care are ingrained in the U.S. health care system. These inequities are not a sign of a broken system: in fact, in this sense, the system is operating just as it was built to operate.”
We are in a race to find vaccine to hopefully put an end to the horrendous number of deaths from COVID-19. But what happens when the system continues to operate in a way that excludes marginalized communities from receiving the vaccine? When a vaccine is developed, will people who do not have insurance have to spend time googling “free COVID-19 vaccine,” only to be led to full voicemails and broken websites?
What will happen in the Latinx community where one in five Latinx people in the United States were uninsured in 2018, or in the Black Community where people are 1.5 times more likely to be uninsured than Whites?
At what point will stop assuming stereotypes about people who are uninsured and begin instead to think how to change the system?
What will the answer be when our next generation asks these questions:
Who gets to receive healthcare?
Who gets access to medical attention?
Who gets the best care?
Who gets treatment in time?
Will black mothers stop dying at disproportionate rates from childbirth?
Will women in lower income communities be able to receive preventative care for cervical cancer?
Will Black, Latinx, Asian and Indigenous people have better access to healthcare and stop being mistreated being the healthcare system?
At what point will we begin to change the system?
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 7: Opening My Eyes
Part 8: Say it Louder: That was so Weird!