New Frontiers in HIV Prevention Sciences

Ariana Childs Graham

The session "New Frontiers in HIV Prevention Sciences" offered a riveting array of models and lessons learned from the ever-evolving field of research on HIV prevention technologies and interventions.

The session "New Frontiers
in HIV Prevention Sciences" offered a riveting array of models
and lessons learned from the ever-evolving field of research on HIV
prevention technologies and interventions. 

Julia Kim, from the School
of Public Health at the University of Witwatersrand, discussed HIV prevention
oriented towards structural determinants, such as gender-based violence,
and how to measure an intervention’s impact. Inherent in this model
is a shift away from the individual level to that of the population. 
Her research focused on women who received training in gender inequalities
and HIV while also participating in a microfinance program. This allowed
for prolonged and consistent contact with the research group, more so
than in a clinical setting. The research demonstrated that change in
a factor such as gender-based violence, which is often deemed to be
"too culturally entrenched and resistant to change," is not only
possible but measurable.

The widespread impact of such
interventions occurs through scale-up to a broader base of people. Ashokh
Alexander, Director of Avahan India AIDS Initiative, added how the integration
of business models aided in crafting research to scale from the outset,
and she emphasized the importance of designing, managing, and evaluating
to scale. Building research into program implementation allows for service
users to be data gatherers as well, which panelist Jeffrey O’Malley
of United Nations Development Programme echoed, and allows for more
immediate assessment of program impact to identify areas in need of
modification.

Tom Coates, Associate Director
of the UCLA AIDS Institute, cautioned that not all forms of information
are equally useful, and that we can neither rely exclusively on randomized
controlled testing nor on self-reported data to measure the impact of
prevention technologies and interventions. 

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Such HIV research has long
posed unique challenges since the data is often difficult to quantify.
The panelists briefly reviewed the evolution in the framing and conceptualization
of that research which has led to better planning and design of interventions.

Culture & Conversation Maternity and Birthing

On ‘Commonsense Childbirth’: A Q&A With Midwife Jennie Joseph

Elizabeth Dawes Gay

Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Jennie Joseph’s philosophy is simple: Treat patients like the people they are. The British native has found this goes a long way when it comes to her midwifery practice and the health of Black mothers and babies.

In the United States, Black women are disproportionately affected by poor maternal and infant health outcomes. Black women are more likely to experience maternal and infant death, pregnancy-related illness, premature birth, low birth weight, and stillbirth. Beyond the data, personal accounts of Black women’s birthing experiences detail discrimination, mistreatment, and violation of basic human rights. Media like the new film, The American Dream, share the maternity experiences of Black women in their own voices.

A new generation of activists, advocates, and concerned medical professionals have mobilized across the country to improve Black maternal and infant health, including through the birth justice and reproductive justice movements.

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Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

At her clinics, which are located in central Florida, a welcoming smile and a conversation mark the start of each patient visit. Having a dialogue with patients about their unique needs, desires, and circumstances is a practice Joseph said has contributed to her patients having “chunky,” healthy, full-term babies. Dialogue and care that centers the patient costs nothing, Joseph told Rewire in an interview earlier this summer.

Joseph also offers training to midwives, doulas, community health workers, and other professionals in culturally competent, patient-centered care through her Commonsense Childbirth School of Midwifery, which launched in 2009. And in 2015, Joseph launched the National Perinatal Task Force, a network of perinatal health-care and service providers who are committed to working in underserved communities in order to transform maternal health outcomes in the United States.

Rewire spoke with Joseph about her tireless work to improve maternal and perinatal health in the Black community.

Rewire: What motivates and drives you each day?

Jennie Joseph: I moved to the United States in 1989 [from the United Kingdom], and each year it becomes more and more apparent that to address the issues I care deeply about, I have to put action behind all the talk.

I’m particularly concerned about maternal and infant morbidity and mortality that plague communities of color and specifically African Americans. Most people don’t know that three to four times as many Black women die during pregnancy and childbirth in the United States than their white counterparts.

When I arrived in the United States, I had to start a home birth practice to be able to practice at all, and it was during that time that I realized very few people of color were accessing care that way. I learned about the disparities in maternal health around the same time, and I felt compelled to do something about it.

My motivation is based on the fact that what we do [at my clinic] works so well it’s almost unconscionable not to continue doing it. I feel driven and personally responsible because I’ve figured out that there are some very simple things that anyone can do to make an impact. It’s such a win-win. Everybody wins: patients, staff, communities, health-care agencies.

There are only a few of us attacking this aggressively, with few resources and without support. I’ve experienced so much frustration, anger, and resignation about the situation because I feel like this is not something that people in the field don’t know about. I know there have been some efforts, but with little results. There are simple and cost-effective things that can be done. Even small interventions can make such a tremendous a difference, and I don’t understand why we can’t have more support and more interest in moving the needle in a more effective way.

I give up sometimes. I get so frustrated. Emotions vie for time and energy, but those very same emotions force me to keep going. I feel a constant drive to be in action and to be practical in achieving and getting results.

Rewire: In your opinion, what are some barriers to progress on maternal health and how can they be overcome?

JJ: The solutions that have been generated are the same, year in and year out, but are not really solutions. [Health-care professionals and the industry] keep pushing money into a broken system, without recognizing where there are gaps and barriers, and we keep doing the same thing.

One solution that has not worked is the approach of hiring practitioners without a thought to whether the practitioner is really a match for the community that they are looking to serve. Additionally, there is the fact that the practitioner alone is not going to be able make much difference. There has to be a concerted effort to have the entire health-care team be willing to support the work. If the front desk and access points are not in tune with why we need to address this issue in a specific way, what happens typically is that people do not necessarily feel welcomed or supported or respected.

The world’s best practitioner could be sitting down the hall, but never actually see the patient because the patient leaves before they get assistance or before they even get to make an appointment. People get tired of being looked down upon, shamed, ignored, or perhaps not treated well. And people know which hospitals and practitioners provide competent care and which practices are culturally safe.

I would like to convince people to try something different, for real. One of those things is an open-door triage at all OB-GYN facilities, similar to an emergency room, so that all patients seeking maternity care are seen for a first visit no matter what.

Another thing would be for practitioners to provide patient-centered care for all patients regardless of their ability to pay.  You don’t have to have cultural competency training, you just have to listen and believe what the patients are telling you—period.

Practitioners also have a role in dismantling the institutionalized racism that is causing such harm. You don’t have to speak a specific language to be kind. You just have to think a little bit and put yourself in that person’s shoes. You have to understand she might be in fear for her baby’s health or her own health. You can smile. You can touch respectfully. You can make eye contact. You can find a real translator. You can do things if you choose to. Or you can stay in place in a system you know is broken, doing business as usual, and continue to feel bad doing the work you once loved.

Rewire: You emphasize patient-centered care. Why aren’t other providers doing the same, and how can they be convinced to provide this type of care?

JJ: I think that is the crux of the matter: the convincing part. One, it’s a shame that I have to go around convincing anyone about the benefits of patient-centered care. And two, the typical response from medical staff is “Yeah, but the cost. It’s expensive. The bureaucracy, the system …” There is no disagreement that this should be the gold standard of care but providers say their setup doesn’t allow for it or that it really wouldn’t work. Keep in mind that patient-centered care also means equitable care—the kind of care we all want for ourselves and our families.

One of the things we do at my practice (and that providers have the most resistance to) is that we see everyone for that initial visit. We’ve created a triage entry point to medical care but also to social support, financial triage, actual emotional support, and recognition and understanding for the patient that yes, you have a problem, but we are here to work with you to solve it.

All of those things get to happen because we offer the first visit, regardless of their ability to pay. In the absence of that opportunity, the barrier to quality care itself is so detrimental: It’s literally a matter of life and death.

Rewire: How do you cover the cost of the first visit if someone cannot pay?

JJ: If we have a grant, we use those funds to help us pay our overhead. If we don’t, we wait until we have the women on Medicaid and try to do back-billing on those visits. If the patient doesn’t have Medicaid, we use the funds we earn from delivering babies of mothers who do have insurance and can pay the full price.

Rewire: You’ve talked about ensuring that expecting mothers have accessible, patient-centered maternity care. How exactly are you working to achieve that?

JJ: I want to empower community-based perinatal health workers (such as nurse practitioners) who are interested in providing care to communities in need, and encourage them to become entrepreneurial. As long as people have the credentials or license to provide prenatal, post-partum, and women’s health care and are interested in independent practice, then my vision is that they build a private practice for themselves. Based on the concept that to get real change in maternal health outcomes in the United States, women need access to specific kinds of health care—not just any old health care, but the kind that is humane, patient-centered, woman-centered, family-centered, and culturally-safe, and where providers believe that the patients matter. That kind of care will transform outcomes instantly.

I coined the phrase “Easy Access Clinics” to describe retail women’s health clinics like a CVS MinuteClinic that serve as a first entry point to care in a community, rather than in a big health-care system. At the Orlando Easy Access Clinic, women receive their first appointment regardless of their ability to pay. People find out about us via word of mouth; they know what we do before they get here.

We are at the point where even the local government agencies send patients to us. They know that even while someone’s Medicaid application is in pending status, we will still see them and start their care, as well as help them access their Medicaid benefits as part of our commitment to their overall well-being.

Others are already replicating this model across the country and we are doing research as we go along. We have created a system that becomes sustainable because of the trust and loyalty of the patients and their willingness to support us in supporting them.

Photo Credit: Filmmaker Paolo Patruno

Joseph speaking with a family at her central Florida clinic. (Credit: Filmmaker Paolo Patruno)

RewireWhat are your thoughts on the decision in Florida not to expand Medicaid at this time?

JJ: I consider health care a human right. That’s what I know. That’s how I was trained. That’s what I lived all the years I was in Europe. And to be here and see this wanton disregard for health and humanity breaks my heart.

Not expanding Medicaid has such deep repercussions on patients and providers. We hold on by a very thin thread. We can’t get our claims paid. We have all kinds of hoops and confusion. There is a lack of interest and accountability from insurance payers, and we are struggling so badly. I also have a Change.org petition right now to ask for Medicaid coverage for pregnant women.

Health care is a human right: It can’t be anything else.

Rewire: You launched the National Perinatal Task Force in 2015. What do you hope to accomplish through that effort?

JJ: The main goal of the National Perinatal Task Force is to connect perinatal service providers, lift each other up, and establish community recognition of sites committed to a certain standard of care.

The facilities of task force members are identified as Perinatal Safe Spots. A Perinatal Safe Spot could be an educational or social site, a moms’ group, a breastfeeding circle, a local doula practice, or a community center. It could be anywhere, but it has got to be in a community with what I call a “materno-toxic” area—an area where you know without any doubt that mothers are in jeopardy. It is an area where social determinants of health are affecting mom’s and baby’s chances of being strong and whole and hearty. Therein, we need to put a safe spot right in the heart of that materno-toxic area so she has a better chance for survival.

The task force is a group of maternity service providers and concerned community members willing to be a safe spot for that area. Members also recognize each other across the nation; we support each other and learn from each others’ best practices.

People who are working in their communities to improve maternal and infant health come forward all the time as they are feeling alone, quietly doing the best they can for their community, with little or nothing. Don’t be discouraged. You can get a lot done with pure willpower and determination.

RewireDo you have funding to run the National Perinatal Task Force?

JJ: Not yet. We have got the task force up and running as best we can under my nonprofit Commonsense Childbirth. I have not asked for funding or donations because I wanted to see if I could get the task force off the ground first.

There are 30 Perinatal Safe Spots across the United States that are listed on the website currently. The current goal is to house and support the supporters, recognize those people working on the ground, and share information with the public. The next step will be to strengthen the task force and bring funding for stability and growth.

RewireYou’re featured in the new film The American Dream. How did that happen and what are you planning to do next?

JJ: The Italian filmmaker Paolo Patruno got on a plane on his own dime and brought his cameras to Florida. We were planning to talk about Black midwifery. Once we started filming, women were sharing so authentically that we said this is about women’s voices being heard. I would love to tease that dialogue forward and I am planning to go to four or five cities where I can show the film and host a town hall, gathering to capture what the community has to say about maternal health. I want to hear their voices. So far, the film has been screened publicly in Oakland and Kansas City, and the full documentary is already available on YouTube.

RewireThe Black Mamas Matter Toolkit was published this past June by the Center for Reproductive Rights to support human-rights based policy advocacy on maternal health. What about the toolkit or other resources do you find helpful for thinking about solutions to poor maternal health in the Black community?

JJ: The toolkit is the most succinct and comprehensive thing I’ve seen since I’ve been doing this work. It felt like, “At last!”

One of the most exciting things for me is that the toolkit seems to have covered every angle of this problem. It tells the truth about what’s happening for Black women and actually all women everywhere as far as maternity care is concerned.

There is a need for us to recognize how the system has taken agency and power away from women and placed it in the hands of large health systems where institutionalized racism is causing much harm. The toolkit, for the first time in my opinion, really addresses all of these ills and posits some very clear thoughts and solutions around them. I think it is going to go a long way to begin the change we need to see in maternal and child health in the United States.

RewireWhat do you count as one of your success stories?

JJ: One of my earlier patients was a single mom who had a lot going on and became pregnant by accident. She was very connected to us when she came to clinic. She became so empowered and wanted a home birth. But she was anemic at the end of her pregnancy and we recommended a hospital birth. She was empowered through the birth, breastfed her baby, and started a journey toward nursing. She is now about to get her master’s degree in nursing, and she wants to come back to work with me. She’s determined to come back and serve and give back. She’s not the only one. It happens over and over again.

This interview has been edited for length and clarity.

Culture & Conversation Human Rights

What ‘Orange Is the New Black’ Missed About the Obstacles Faced After Prison

Victoria Law

Whether or not they meant to do so, the writers of Orange Is the New Black have sent viewers the message that prison is preferable to life on the outside.

“You’re getting out early.” Those words are music to the ears of anyone behind bars. But on Orange Is the New Black, the women at Litchfield Penitentiary tend to see release as a bogeyman rather than welcome news.

In Season four of the Netflix series, Aleida Diaz (Elizabeth Rodriguez) learns that she’s eligible for early release. At first, this is hopeful news: Being out of prison means that she can start the process of getting her children and newly born granddaughter out of foster care. But then reality sets in: She’s leaving prison without an education or skills that will help her find a job. Even worse, she now has a criminal record. “Sure, people love to hire ex-cons,” she snaps.

This is not the first time that the show has treated release and reentry as something to be feared rather than welcomed. In the first season, Taystee Jefferson (Danielle Brooks) is released on parole. Once out, she’s faced with the realities of no housing, no support system, and no job opportunities. Though the show never specifies what she did, Taystee is sent back to prison, where she tells Poussey Washington (Samira Wiley) that she deliberately violated her parole so that she could return to Litchfield.

Whether or not they meant to do so, the writers of Orange Is the New Black have sent viewers the message that prison is preferable to life on the outside. And in doing so, the show suggests that the very real systemic obstacles that formerly incarcerated people face upon release, especially where employment is concerned, are impossible to overcome—rather than drawing attention to the importance of dismantling those barriers, and the organizing being done around the country to do so.

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Over 650,000 people leave state and federal prisons each year. For many, finding stable employment is one of the first steps to surviving (and hopefully thriving) outside of prison. It’s frequently a prerequisite to finding their own housing and reuniting their families. For those on probation or parole, being gainfully employed is also a condition of staying out of prison. But finding a job isn’t easy, especially with a gap in employment history and a prison record.

Advocates, however, including formerly incarcerated people, have been working to eliminate one of the most obvious barriers: the question about past felony convictions on an initial job application, popularly known as the “Box.” In many cities, they are succeeding. More than 100 cities have passed “Ban the Box” legislation, which ends that practice of asking about previous convictions on initial applications. In 2015, the federal government also jumped on the Ban the Box wagon with Obama ordering federal agencies to delay inquiries into past felonies during the hiring process.

Ban the Box doesn’t mean that the question of criminal records never comes up. What it does is give job seekers a chance to be considered on their merits and not on their previous actions. If an applicant seems qualified for the job, they will go through the rest of the hiring process like every other applicant does. The question of past convictions may come up at some point during that process, but by then, the person has demonstrated their skills and qualifications for the job before having to explain past mistakes (as well as steps they’ve taken to ensure that they won’t land in a similar situation again).

Ban the Box has been shown to increase employment among formerly incarcerated job seekers. In Minneapolis, Minnesota, between 2004 and 2006, for example, the city hired less than 6 percent of applicants with convictions. Once it passed its version of Ban the Box, however, that percentage jumped to nearly 58 percent. Similarly, in Durham, North Carolina, the number of people hired for municipal jobs increased nearly sevenfold after it passed similar protections in 2011.

However, Ban the Box isn’t enough to ensure that formerly incarcerated job seekers are given a chance. Legislation needs to go hand-in-hand with a cultural shift toward people coming home from prison. Maria C., who returned to New York City in 2011 after a two-year incarceration for drugs, knows this firsthand. In 2015, New York City banned the box. But even before it did so, city law prohibited employers from making decisions based on convictions unrelated to the job being sought.

On paper, that should have meant that Maria should not have encountered discrimination from prospective employers. As Maria explained to Rewire in an interview, in reality, she still struggled to find work, although it is difficult to say how much her prior conviction and imprisonment weighed in prospective employers’ decision-making processes.

She applied for a job at a national wholesale chain. “Their website said they were ex-con friendly,” she recounted. Maria was called in for an interview, tested negative for drugs, and was told that the company would conduct a background check. After the background check, however, she was told that she did not get the job. She applied to other stores and supermarkets; from those, she received no response at all.

Finally, through an employment program of the Fortune Society, a nonprofit which helps people with reintegration after their release from prison, she found a job at a laundromat.

One afternoon, two months into her new job, she told her boss that she had to leave work early to see her parole officer. “After that, they started getting picky with me,” she told Rewire. Shortly after, she was let go.

The Fortune Society helped her find a second job at a warehouse. But a few months after she was hired, she said that the boss told her, “We’ll call you when we need you.” She never received a call.

At both jobs, Maria says she was asked about her record. She explained the circumstances of her arrest and incarceration as well as what she had accomplished since that time. That’s why she’s puzzled as to why she was let go after a few months. Maria spent five years in New York City; with the exception of the handful of months at the laundromat and warehouse, she remained unemployed.

Maria now lives in Lebanon, Pennsylvania, a city that takes up 4.2 square miles and has a population of about 25,000 people. Lebanon and the surrounding county have a median household income of $56,000 and fewer than 3,000 employers. However, Lebanon also has a work release program, through which people in the local jail system are allowed to work in the community during the day before returning to the jail for the night. The presence of the work release program—especially in a comparatively small community—means that employers are almost certainly more accustomed to job seekers and employees who have criminal records. Within a week of arriving, Maria found work through a temp agency at a food factory where she packs croutons, chocolate, and mashed potatoes.

New York state also has a work release program; in 2010, nearly 2,000 people participated. Even so, the same willingness to hire formerly incarcerated people hasn’t seemed to manifest on a wide scale. Maria knows that the only way formerly incarcerated people like her will find jobs is if there’s a shift in culture and perceptions. Employers “should give people a chance to be able to succeed,” she said. “But employers don’t want to give them a chance.”

As Maria’s experience shows, part of this shift involves policies that create incentives to hire formerly incarcerated people. Some of these policies, like the Work Opportunity Tax Credit, already exist. New York City itself has promoted the Fair Chance Act, its version of Ban the Box, even placing ads on the subway informing formerly incarcerated New Yorkers and their potential employers of this new protection. Local and federal agencies should take similar measures to promote existing opportunities.

Or, for example, consider the model of the Johns Hopkins Health System (JHHS) in Baltimore, Maryland, the state’s largest employer of formerly incarcerated people. In 2014 alone, the hospital hired more than 120 people with past prison records and, between 2009 to 2012, 430 formerly incarcerated people overall. “With 9,000 incarcerated people returning to Baltimore each year, the JHHS wanted to contribute to community re-integration efforts by providing employment opportunities,” Yariela Kerr-Donovan, the director of Johns Hopkins’ Department of Human Resources, stated in an interview with the nonprofit Senate Presidents’ Forum. To do so, they sought a Department of Justice training grant and partnered with community colleges and a training firm specifically to train people for positions inside the health system. This is a model that other large businesses can—and should—emulate.

The real-life job market is already stacked against women of color. As late as 2013, women of all races and ethnicities earned only 78 percent of what men earned. For many women of color, the wage gap widens—Black women were paid 64 percent of their white male counterparts. For Latinas, that wage gap widened to 54 percent and for Native Americans to 59 percent. (Surprisingly, Asian-American women showed the smallest wage gap, earning 90 percent of their white male counterparts. I’d like to know which Asian-American women’s incomes were surveyed and how many were members of underpaid and largely invisible workforces, such as domestic service or beauty industries, across the country.)

Now add in the disproportionate conviction and incarceration of women of color, which often exacerbates a lack of marketable skills, and you can see why efforts like Ban the Box are a necessary first step. Without a shift, however, in the ways that formerly incarcerated people are viewed—as potential workers, neighbors, and members of society—Ban the Box won’t be enough.

One show won’t make the sweeping changes necessary to overcome decades of institutional discrimination. But it can change individual hearts, minds, and hiring practices. Through Aleida’s release, Orange Is the New Black now has a storyline that could address some of the obstacles women face upon release, including employment discrimination and wage inequality. It remains to be seen whether the next season will make good on that opportunity.