Chloe Bootstaylor: Welcome to our second panel. This panel focuses on women of color in health, issues, and solutions. The session is inspired by Professor June Cross of the Columbia School of Journalism and her recent film, Wilhemina's War, which follows the story of Wilhemina Dixon and depicts the obstacles that Americans with HIV/AIDS face in accessing not only adequate healthcare but also financial, infrastructural, and social support in their communities.
This panel will consist of Professor Underhill and Nia Weeks. June Cross will join us a little later on. We will start with a clip from her film, and then our moderator and our panelists will take it away. So, here's a little bit of Wilhemina's War.
Excerpt from Wilhemina's War. (1)
Governor Nikki Haley [NH]: This is a great county. It's a great place to grow up. It's a great place to live. You should be incredibly proud of it.
Representative Joe Neal [JN]: Rural South Carolina is dying on the vine. Farming has failed. There's no industry.
NH: We need to handle South Carolina the way that we know that's best, not the way the President knows that's best.
Wilhemina Dixon [WD]: So, are you going to drink it or you want to just take it? All right.
JN: We have a county here, for example, Bamberg, that lost its hospital. There's not one doctor in the whole county.
WD: Every two months she goes to Columbia. That has been a burden on us because when gas got so high we didn't have the money to get gas to go into Columbia. And a lot of times the car be broke or something like that, but I just have to make sure I get her to Columbia.
Vivian Clark-Armstead [VCA]: This state right now is investing very little in saving the lives of African Americans affected by HIV/AIDS. And so, if you're waiting on the cavalry to come, you 're waiting on somebody else to come and save us, and you think the government is coming, if you think help's coming, just think about Katrina. They ain't coming. So, we're going to have to save ourselves. We're going to have to save our children.
Dayshal Dicks [DD]: My name is Dayshal Dicks. I have HIV for fifteen years. All my life.
WD: Well, they just gave her to me for her to die. She was so little. And she had turned like ... I say like if you got a chicken and you pick it, and it starts to turn kind of blueish. But she was so tiny.
DD: Oh, you HIV positive? You're going to die today or tomorrow.
Ms. Phyllis: HIV? You don't hear too much about that around here. Because if people got it, they 're not going to tell you about it.
Monique [M]: What is this I hear that you have stopped taking your medicine for a while? What happened?
DD: Uh ... I think it was stress.
M: You got depressed?
WD: Any type of like depression, depression is the worst thing you can have with it. How can you get yourself straightened out if you have no home to go to, to sleep at night? Just in the streets. They might as well let everybody that's got HIV die.
Kristen Underhill [KU]: Thank you so much having us. So, after seeing the preview, I'm sure there's no additional encouragement that you need to see this movie. We watched it last night here at the law school, and it's incredibly moving, and it's really a striking illustration of some of the systemic and structural disadvantages that people face when they're trying to access treatment for HIV, in a healthcare system, in a state that has not expanded Medicaid, with all these different layers of disadvantage, marginalization, and poverty.
So, the film tells the stories of Wilhemina Dixon; Toni Dicks, her daughter; and Dayshal Dicks, her granddaughter. Toni and Dayshal are both HIV-positive, and the movie discusses how this affects their everyday lives, and how they're able (or unable) to get access to healthcare. So, this movie exposes some of the changes in the nature of the HIV epidemic here in the United States, and particularly its new concentration among men and women of color.
Just as some background information, 12% of the nation's population is African American. (2) About 40% of people living with HIV, and 45% of new HIV diagnoses, are among African American men and women. (3) Of the nearly 3,400 people who died of HIV in 2015, 52% of them were African American. (4) And of African American people who are diagnosed with HIV, only about 50% are in care and have a suppressed viral load, which means that the virus is at such a low level in the bloodstream that it is considered to be undetectable. (5) So, the lifetime risk of HIV and AIDS are vastly higher for African American people compared to white people in the United States. For example, the risk of HIV is 16 times higher for African American women compared to white women. (6)
For men, the lifetime risk of HIV is almost 8 times higher for African American men compared to white men, with African American men having the highest risk of HIV infection overall, at about 1 in 20 men being infected over the course of his lifetime. (7) The disparity is more extreme for men who have sex with men, which is the group at primary risk of HIV infection in the United States. 50% of black men who have sex with men, and 25% of Latino men who have sex with men, are projected to be diagnosed with HIV, compared to 10% of white men who have sex with men. (8) So, really very striking disparities here.
HIV risk also varies along geographical axes. And the trailer is correct that the areas with the highest risk are in the rural South. Alabama, Delaware, North and South Carolina, and Mississippi are among the states with the highest incidence of HIV. (9) Of these, only Delaware has adopted the Medicaid expansion under the Affordable Care Act. (10) So, there are major structural disadvantages to getting care in these places.
These disparities in HIV incidence are really just one window on disparities in health generally, and in healthcare. Both infectious and chronic diseases break in the United States along what Paul Farmer has called "social fault lines." (11) Disease is disproportionately experienced by people who experience social and economic disadvantage and exclusion. We see these disparities show up in three different places. We see it in the incidence and burden of disease; in access to the care system; and in the quality of care for people who are actually in the system and who are able to make it into the doctor's office. I'll talk about each of these briefly in turn.
First, disparities in the incidence and severity of disease. Some of the social determinants of health include discrimination and stigma due to factors like race and gender, disability, illness, poverty, and age. If you're familiar with an intersectionality framework, this is the idea that people who experience multiple sources of discrimination are even further disadvantaged by those overlapping layers of stigma and discrimination. HIV stigma, as shown in this movie, is one source of discrimination, but it functions as a double or even triple stigma. With HIV, you are perceived as not only ill, but also dangerous, and as somebody who engages in socially unacceptable practices. So, this triple stigma really makes it very difficult to access care, to talk about care, and to engage in prevention and public health programming.
Additional social determinants of health we see in this movie, and that we can talk about, include neighborhood experiences of poverty; lack of safe spaces for recreation and social participation; lack of employment and educational opportunities; lack of prevention funds. Public funds for public health programming are always in tension with other priorities, but these tradeoffs are really acute, and especially damaging in poor geographical areas. The disparities in the geographic distribution of care are really very considerable, with access to doctors and pharmacies being extremely limited in some areas.
Physiological experiences of stress, including things like minority stress and internalized stigma, can also further increase the odds of both infectious and chronic disease.
Finally, there's effects of local epidemiology. When you have a local area with a higher prevalence of infectious disease, the same kind of behavior that you can engage in anywhere becomes riskier here, because disease is already more prevalent here. So, you're more likely to be exposed to an infectious disease like HIV.
I should also add that law itself can be very hostile. So, when we talk about law in the HIV space, we talk about penalties for prostitution. We talk about the effects of the criminal justice system generally in its tendency to disrupt lives and to expose people even further to socio-economic marginalization. And, of course, restrictions on programs like needle exchanges and reduced access to Medicaid are particularly important.
All of these contribute to what have been called "syndemics." These are overlapping and mutually reinforcing experiences of illness, stigma, mental health burdens, and stress-related coping that includes problems like substance use. And all of these are present in this movie, and all of these contribute to the cumulative effect of social disadvantage. We see disparities in the care system. So, all of those are problems that can disproportionately increase the incidence and the burden of disease.
Second, once you have disease, there are also disparities in access to care...