Educating Ourselves about HIV: A Call From the “Underground”

Jonathan Rochkind

Across the country, focus groups reveal that many Americans are ill-informed about HIV and AIDS, but want to know more.

Editor’s Note: An earlier mistake in this article has been corrected to state that "about one in five Americans infected with HIV don’t know it."  The line had previously and erroneously been written to suggest that one in five Americans were infected with HIV.

 

Readers of Rewire
likely know that HIV/AIDS in the United States remains an issue. It
is estimated that someone in the United States gets the virus every
nine and a half minutes
and that about one in five Americans infected with HIV don’t know it
HIV is the fourth leading cause of death for African-American men and
the third for African-American women between the ages of 25-44.

But ask the American public
about HIV/AIDS in the United States and, more often than not, you may
simply receive blank stares. This is something we discovered when traveling
the country conducting focus groups for the report "Impressions of HIV/AIDS in America:
Building Public Support For Workable Solutions To End The Epidemic
,
researched and written by Public Agenda, a nonpartisan
nonprofit research and engagement organization. Yet while we found low awareness of the issue overall, below the surface
of those stares is stigmatization of those who are infected.  Yet there also is a general understanding that something needs to be done and
support for efforts to reduce both the incidence of HIV infections, and the discrimination
that can occur from having AIDS. 

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That the public does not often
think about how HIV/AIDS is affecting America is well-documented. The Kaiser Family Foundation recently
asked Americans if AIDS affects their own community,
and nearly 3 in 10 said that HIV has never been a problem, with another
10 percent admitting outright that they do not know. 

In a focus group we conducted in Westchester County, New York–a suburban enclave of New York City, where HIV is spreading at three times the national average–respondents said things like, "I don’t hear anything talked about it. You
don’t see anything in the papers…".  On the other side of the country, a person living in downtown
Los Angeles characterized the disease as "…a nonsubject…an
underground disease."

The scarcity of discussion about HIV/AIDS
may explain misconceptions about how the disease is transmitted, voiced
by some focus group participants, perhaps left over from 1994–the year
Magic Johnson announced he was HIV positive, and the last time many
we spoke with said they had heard anything about the illness. As a woman
from the Des Moines Iowa group put it, "…when AIDS first hit
in the ’80s…there was all these rumors how you can get it and how
you can’t.  I don’t think anyone ever heard the answers…no one really
knows [how the disease is transmitted]."  

This undercurrent of not really
knowing if you can get HIV from casual contact permeated every focus
group conducted.  Even though most of the people we spoke with rattled off unprotected
sex and needle exchange as ways that HIV is transmitted, nearly everyone
we spoke with stated that they would be uncomfortable around people
who are HIV-positive, especially if they are doctors, dentists, babysitters
or teachers.  A man in Los Angeles said, "If you know a person has
AIDS, or you find out a person has AIDS… you might feel sorry for
them, et cetera, but you wouldn’t want them around your child."  Another man in Westchester said, "if you knew your doctor had AIDS,
I think the majority of patients would not go back to that doctor…if
you saw a container on the front that said, ‘Acid: do not put your
hands in it,’ you wouldn’t do that either." 

Although this lack of knowledge
may be disconcerting, we also heard many individuals suggest that stigmatization
is wrong even if they personally were not ready to stop it.  When asked
to think about what it may be like to be HIV-positive, we heard responses
like this one in Birmingham, Alabama, "People [would be] drawing
away from you.  They don’t want to have anything to do with someone who’s
infected…. I think that socially, it would just cut them off."  
A Des Moines, Iowa, focus group participant offered this assessment:
"…they sometimes will ostracize people that have [HIV/AIDS] because
the fear is just like, ‘I don’t want to be around you because I don’t
know how to deal with you because you have HIV,’" showing a real
concern about the possible isolation those with HIV may face.  

And, perhaps most importantly,
the people we spoke with also voiced support for increasing funding
to address HIV/AIDS issues, showing perhaps that empathy and compassion
trump lack of awareness and understanding.  Much of the funding, they
say, should go primarily to education programs that would, in the words
of a man from Los Angeles, "…get [us] more enlightened, and…
want to know more."  

Many of the people we spoke
with, often the very same people who had confessed that they did not
know anything about AIDS in the U.S, and the very same people who said
they would fear those who are HIV positive, lingered after the groups
saying that they wanted to know more, that they wanted to know "the
truth."

A call, perhaps, to take the
issue of HIV/AIDS in the United States out from the "underground"
and into the national discussion. 

News Politics

Anti-Choice Democrats: ‘Open the Big Tent’ for Us

Christine Grimaldi & Ally Boguhn

“Make room for pro-life Democrats and invite pro-life, progressive independents back to the party to focus on the right to parent and ways to help women in crisis or unplanned pregnancies have more choices than abortion,” the group said in a report unveiled to allies at the event, including Democratic National Convention (DNC) delegates and the press.

Read more of our coverage of the Democratic National Convention here.

Democrats for Life of America gathered Wednesday in Philadelphia during the party’s convention to honor Louisiana Gov. John Bel Edwards (D) for his anti-choice viewpoints, and to strategize ways to incorporate their policies into the party.

The group attributed Democratic losses at the state and federal level to the party’s increasing embrace of pro-choice politics. The best way for Democrats to reclaim seats in state houses, governors’ offices, and the U.S. Congress, they charged, is to “open the big tent” to candidates who oppose legal abortion care.

“Make room for pro-life Democrats and invite pro-life, progressive independents back to the party to focus on the right to parent and ways to help women in crisis or unplanned pregnancies have more choices than abortion,” the group said in a report unveiled to allies at the event, including Democratic National Convention (DNC) delegates and the press.

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Democrats for Life of America members repeatedly attempted to distance themselves from Republicans, reiterating their support for policies such as Medicaid expansion and paid maternity leave, which they believe could convince people to carry their pregnancies to term.

Their strategy, however, could have been lifted directly from conservatives’ anti-choice playbook.

The group relies, in part, on data from Marist, a group associated with anti-choice polling, to suggest that many in the party side with them on abortion rights. Executive Director Kristen Day could not explain to Rewire why the group supports a 20-week abortion ban, while Janet Robert, president of the group’s board of directors, trotted out scientifically false claims about fetal pain

Day told Rewire that she is working with pro-choice Democrats, including Sen. Kirsten Gillibrand and Rep. Rosa DeLauro, both from New York, on paid maternity leave. Day said she met with DeLauro the day before the group’s event.

Day identifies with Democrats despite a platform that for the first time embraces the repeal of restrictions for federal funding of abortion care. 

“Those are my people,” she said.

Day claimed to have been “kicked out of the pro-life movement” for supporting the Affordable Care Act. She said Democrats for Life of America is “not opposed to contraception,” though the group filed an amicus brief in U.S. Supreme Court cases on contraception. 

Democrats for Life of America says it has important allies in the U.S. House of Representatives and the U.S. Senate. Sens. Joe Donnelly (IN), Joe Manchin (WV), and Rep. Dan Lipinski (IL), along with former Rep. Bart Stupak (MI), serve on the group’s board of advisors, according to literature distributed at the convention.

Another alleged ally, Sen. Bob Casey (D-PA), came up during Edwards’ speech. Edwards said he had discussed the award, named for Casey’s father, former Pennsylvania Gov. Robert P. Casey, the defendant in the landmark Supreme Court decision, Planned Parenthood v. Casey, which opened up a flood of state-level abortions restrictions as long as those anti-choice policies did not represent an “undue burden.”

“Last night I happened to have the opportunity to speak to Sen. Bob Casey, and I told him … I was in Philadelphia, receiving this award today named after his father,” Edwards said.

The Louisiana governor added that though it may not seem it, there are many more anti-choice Democrats like the two of them who aren’t comfortable coming forward about their views.

“I’m telling you there are many more people out there like us than you might imagine,” Edwards said. “But sometimes it’s easier for those folks who feel like we do on these issues to remain silent because they’re not going to  be questioned, and they’re not going to be receiving any criticism.”

During his speech, Edwards touted the way he has put his views as an anti-choice Democrat into practice in his home state. “I am a proud Democrat, and I am also very proudly pro-life,” Edwards told the small gathering.

Citing his support for Medicaid expansion in Louisiana—which went into effect July 1—Edwards claimed he had run on an otherwise “progressive” platform except for when it came to abortion rights, adding that his policies demonstrate that “there is a difference between being anti-abortion and being pro-life.”

Edwards later made clear that he was disappointed with news that Emily’s List President Stephanie Schriock, whose organization works to elect pro-choice women to office, was being considered to fill the position of party chair in light of Rep. Debbie Wasserman Schultz’s resignation.

“It wouldn’t” help elect anti-choice politicians to office, said Edwards when asked about it by a reporter. “I don’t want to be overly critical, I don’t know the person, I just know that the signal that would send to the country—and to Democrats such as myself—would just be another step in the opposite direction of being a big tent party [on abortion].” 

Edwards made no secret of his anti-choice viewpoints during his run for governor in 2015. While on the campaign trail, he released a 30-second ad highlighting his wife’s decision not to terminate her pregnancy after a doctor told the couple their daughter would have spina bifida.

He received a 100 percent rating from anti-choice organization Louisiana Right to Life while running for governor, based off a scorecard asking him questions such as, “Do you support the reversal of Roe v. Wade?”

Though the Democratic Party platform and nominee have voiced the party’s support for abortion rights, Edwards has forged ahead with signing numerous pieces of anti-choice legislation into law, including a ban on the commonly used dilation and evacuation (D and E) procedure, and an extension of the state’s abortion care waiting period from 24 hours to 72 hours.

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.