Upstream USA Guarantees to Rework Contraceptive Care. Specialists Are Elevating Crimson Flags.

The Audacious Undertaking, a “collaborative funding initiative” below the umbrella of the “large concepts” nonprofit TED, lately introduced this 12 months’s grantees. Amongst them was a contraceptive initiative referred to as Upstream USA.

Whereas the Audacious Undertaking didn’t provide specifics on the quantity of its grant, Upstream seems to be elevating vital funds to help a nationwide enlargement. In an announcement supplied to Rewire Information Group, the group stated it plans to “rework contraceptive care in additional than 700 well being facilities throughout the US by 2030, reaching 5 million ladies.”

Right here’s how: Upstream gives coaching for medical suppliers and entrance desk employees on contraceptive schooling and counseling, and sensible expertise like intrauterine machine (IUD) insertion. The group additionally gives technical help, comparable to medical coding and billing guides. In response to its assertion to RNG, Upstream’s packages have already helped “almost 1 million ladies entry their most well-liked contraception methodology” since 2014, in states together with Delaware, Massachusetts, North Carolina, Rhode Island, and Washington.

Sounds good, proper? In spite of everything, boundaries to contraceptive entry in the US are immense.

However Upstream has repeatedly confronted criticism from specialists, notably advocates, researchers, and clinicians who method their work by the lens of reproductive justice. Particularly, Upstream has come below hearth for its claims that entry to contraception can cut back or finish poverty, and its prioritization of long-acting reversible contraception (LARC) over different strategies.

From Upstream’s inception, “many people have been involved in regards to the narrative that they have been basing their total work on,” stated Dr. Christine Dehlendorf, a household doctor, researcher, and director of the Particular person-Centered Reproductive Well being Program on the College of California, San Francisco, referring to Upstream’s anti-poverty message.

“They’ve sort of elided that down the street, at the least throughout the [reproductive health and justice] neighborhood, as a result of they heard loud and clear that that was not one thing that our discipline felt was applicable,” she stated.

In its assertion, Upstream stated its packages have “developed” over time. And it might effectively have modified the way in which it trains well being professionals to offer care—however from the surface, it’s unimaginable to know.

Liza Fuentes, a researcher who served on Upstream’s Medical Advisory Committee from 2014 by 2019, stated she by no means noticed the total coaching curriculum. In complete, RNG spoke with seven specialists for this story, all of whom have labored or interacted with Upstream sooner or later between 2014 and the current. None of them have been ever allowed to see Upstream’s full coaching curriculum.

“What makes me very nervous about them as a corporation on this house is their reluctance—or full refusal—to be clear in regards to the particulars of how they do issues, and most significantly, about being totally open about their outcomes,” one researcher stated.

The researcher spoke with RNG on the situation of anonymity as a result of they “worry angering the very foundations and funders that every one of us look to to fund this extremely important analysis.”

“They’re placing the cart earlier than the horse”

Upstream was co-founded in 2014 by Mark Edwards and Peter Belden. Edwards, who stays the group’s CEO, beforehand based and ran the anti-poverty group Alternative Nation and served on the board of the Nationwide Marketing campaign to Forestall Teen and Unplanned Being pregnant (now referred to as Energy to Determine).

At a 2015 Brookings Establishment occasion, Edwards stated, “I’ll admit my bias: I believe that serving to ladies obtain their very own objectives and change into pregnant after they need to is among the strongest issues we are able to do to extend alternative and financial mobility.”

This is only one instance of quite a few statements he and the group’s companions have made to this impact.

Definitely, nobody within the reproductive well being and justice house would take problem with the concept that individuals ought to have management over their very own copy. Their downside is with the assertion that decreasing “unplanned” or “unintended” being pregnant is a poverty remedy.

“That’s lots of strain to placed on contraception to unravel one in every of society’s main ills,” stated the nameless researcher, who heard Edwards give the same pitch. “The concept contraception is a remedy for under-privilege is ignorant at greatest and offensive at worst.”

Such claims—which are sometimes repeated, and never simply by Edwards—are normally primarily based on historic knowledge or estimates. The concept offering higher entry to contraception might carry individuals out of poverty now has not been confirmed, whereas different interventions, comparable to giving low-income households more cash, are identified to work. Plus, suggesting that poor individuals are poor as a result of they’ve extra youngsters ignores the quite a few societal causes of poverty.

“Individuals who have more cash have fewer infants, not the opposite method round,” stated Dr. Joia Crear-Perry, an OB-GYN, founder and president of the Nationwide Beginning Fairness Collaborative, and a founding steering committee member of the Black Mamas Matter Alliance. “They’re placing the cart earlier than the horse.”

In a 2019 op-ed in Essence, members of Black Mamas Matter Alliance referred to as on Upstream to “conduct analysis on Black Mamas to carry structural programs and social insurance policies accountable for poverty, as a substitute of growing and advancing mechanisms for controlling and limiting being pregnant and childbirth for low-income individuals.”

As Upstream pursued partnerships with one state after one other, Crear-Perry stated she and different Black ladies reproductive justice advocates requested policymakers in these states to not work with them.

“We’d have to return in and attempt to undo the hurt that they have been doing,” she stated. Crear-Perry stated she had many direct conversations with Upstream in an effort to persuade them to alter their messaging.

“It was all the time round, so sooner or later I simply stopped speaking to them,” she stated.

The give attention to LARCs

Upstream’s mission, it says, is to extend “equitable entry to the total vary of contraceptive choices.” Nevertheless, within the group’s early years, there was a transparent give attention to LARCs. That, together with Upstream’s anti-poverty message, evoked the lengthy historical past of eugenics and reproductive coercion of low-income individuals, particularly those that are Black, Latinx, Indigenous, and disabled, the nameless researcher stated.

“Our biggest worry is that this is similar outdated coercion wrapped up in modern-day clothes,” they stated.

Nevertheless, it’s essential to grasp that, on the time of Upstream’s founding, a so-called “LARC-first” method was thought-about the gold normal by many. For instance, on this 2015 YouTube video, Edwards references a examine which discovered that “when ladies have been supplied the total vary of strategies, same-day, in an setting the place they’re endorsed rather well about what was simplest … they overwhelmingly selected IUDs and implants.” The analysis he’s citing got here from Washington College in St. Louis, and was extensively celebrated on the time.

Upstream’s first main initiative was a public-private partnership with the state of Delaware referred to as DelCAN. In its assertion to RNG, Upstream stated the purpose of DelCAN was “to extend entry to the total vary of contraceptive strategies, notably these strategies that have been the farthest out of attain, which, at the moment, was LARCs.”

And that is true: For many years, suppliers in the US had been hesitant to position LARCs, due largely to previous disasters such because the Dalkon Defend, a poorly designed IUD that killed at the least 18 ladies and injured a whole lot of hundreds of others. The primary contraceptive implant, Norplant, additionally had critical unwanted effects and was promoted in a coercive method, together with by giving individuals the supposed “alternative” of utilizing Norplant slightly than serving time in jail.

Consequently, a complete era of medical suppliers acquired little coaching about LARCs, and in the event that they did provide them to sufferers, they usually did so solely for many who had already given start. In response to the Nationwide Heart for Well being Statistics, just one.5 p.c of girls ages 15 to 44 in the US have been utilizing LARCs in 2002. Because of analysis, coaching initiatives, and public consciousness campaigns, that elevated to 18 p.c by 2016.

In truth, on the time of Upstream’s founding, the World Well being Group, the American School of Obstetricians and Gynecologists (ACOG), and the Facilities for Illness Management and Prevention all endorsed a “tiered-effectiveness” contraceptive counseling mannequin, that means that sufferers have been to be offered with the simplest strategies—i.e. LARCs—first, with different strategies launched in descending order of effectiveness.

“Our technical help is rooted within the new High quality Household Planning pointers from the Facilities for Illness Management and Prevention (CDC) and Workplace of Inhabitants Affairs,” reads an archived model of Upstream’s web site from 2015. These pointers endorsed the tiered-effectiveness mannequin.

The shift to shared decision-making

Many individuals do want LARCs. However, to call only a few drawbacks, insertion and removing might be extraordinarily painful, and other people typically have hassle getting LARCs eliminated—in some circumstances encountering a flat-out “no” from their medical doctors. Plus, effectiveness merely isn’t the one factor that individuals care about relating to contraception. Based mostly on these components, in addition to the alarming echoes of the eugenics motion in the way in which many organizations have been selling LARCs, researchers and advocates started to push again.

In an influential 2014 paper, Anu Manchikanti Gomez, Amy Allina, and Fuentes wrote:

“Efforts to extend LARC use have traditionally been mired in racial and sophistication biases about who’s able to managing the ‘hazard’ of fertility and who’s valued as a mom in American society. When LARC use is the ‘default final result’ particularly for girls who are likely to have the fewest decisions in life, reproductive autonomy could also be inadvertently restricted in contrast with the autonomy of girls who aren’t perceived as being at excessive danger for unintended being pregnant.”

And the sphere has modified: ACOG now encourages using a “shared decision-making mannequin” and considers the tiered-effectiveness method to be inappropriately directive.

“Shared decision-making is when there’s a partnership between sufferers and their suppliers, whoever that could be—a counselor, doctor, a nurse,” Dehlendorf stated. “It’s about supporting sufferers to make choices for themselves which might be greatest aligned with their very own wants, values, and preferences.” In different phrases, in a shared decision-making mannequin, the physician or counselor doesn’t have an agenda, and doesn’t suppose one possibility is healthier than one other.

In its assertion to RNG, Upstream stated it at present makes use of a shared decision-making mannequin. The group has additionally signed on to the LARC Assertion of Rules written by the reproductive justice group SisterSong and the Nationwide Girls’s Well being Community.

“We prepare our health-care companions on insertion of LARCs, in addition to removing,” Upstream Chief Working Officer Ann Quandt stated in a follow-up assertion. “Each companies must be equally accessible at a given well being heart. Upstream’s Monitoring, Analysis and Studying (MEL) Group evaluations every well being heart’s knowledge alongside the middle, to verify that each insertions and removing companies are being supplied at their well being heart.”

Nevertheless, when requested to offer supplies or data associated to its trainings for suppliers, Upstream as a substitute supplied its affected person schooling supplies. One in all them, a one-page abstract of contraception choices, shows the strategies in alphabetical order, which one knowledgeable stated is in step with suggestions for non-directive counseling. One other, an interactive resolution making wheel, nonetheless teams strategies in line with effectiveness, although it does include extra details about different advantages and potential unwanted effects.

Three completely different specialists reviewed the supplies for RNG. All of them agreed that, with out understanding how Upstream directs suppliers and clinic employees to counsel sufferers, it’s unimaginable to know whether or not they’re encouraging directive—and subsequently probably coercive—counseling.

“Put contraception within the consuming water”

Proof from Upstream’s personal packages additionally raises alarms about potential bias and coercion. For instance, Jamie Manzer and Ann Bell, who interviewed suppliers skilled by Upstream as a part of an exterior analysis of DelCAN, discovered that a few of them expressed alarming attitudes towards their sufferers.

“Put contraception within the consuming water, put it into the air flow programs,” one white physician stated. “Should you knew that 100% of unintended pregnancies happened in [these two low SES, urban ZIP codes], then sure, I might say goal [those two ZIP codes],” he continued.

Some overtly admitted steering sure sufferers towards LARCs or making it tough for these sufferers to get LARCs eliminated.

In one other examine that was a part of the identical analysis, Manzer and Bell interviewed the sufferers at Upstream-trained well being facilities. One ingredient of the coaching inspired suppliers to ask sufferers who don’t need to change into pregnant about contraception at each go to, even when that wasn’t associated to their cause for being there.

“I got here right here for, like, a harm hand and also you’re asking me, ‘Did [I] select a contraception methodology but?’” stated one affected person, including that the method made her “uncomfortable.”

DelCAN started in 2014, so it’s potential Upstream’s strategies have modified considerably since then. Nevertheless, Upstream’s personal knowledge from more moderen initiatives, printed within the journal Contraception this 12 months, present vital racial disparities in patient-reported satisfaction with “supplier respect, consideration for affected person preferences, and informativeness.”

What’s extra, researchers take problem with what they are saying is a sample of deceptive use of information by Upstream and Edwards. For instance, the “Outcomes” web page on Upstream’s web site touts a “25% discount in births from unintended pregnancies in Delaware.” However that is primarily based on what researchers name “pre-post knowledge,” that means it’s a comparability of demographic knowledge from earlier than and after Upstream’s presence within the state. It doesn’t set up causation.

In a TED discuss simply months in the past, Edwards claimed that “over the span of ten years, it’s been estimated that six out of ten typical contraception tablet customers will change into by chance pregnant.” Quandt confirmed that this determine got here from a 2014 New York Occasions article, which used first-year contraception failure charges to extrapolate the strategies’ failure charges over ten years.

However it is a “full misuse of the information” on contraception effectiveness, Dehlendorf stated. First, researchers typically have a look at the effectiveness of contraception strategies over the primary 12 months of use to make sure they’re “evaluating apples to apples.” However many strategies truly change into simpler over time. For instance, a longtime contraception consumer might be higher at taking their capsules commonly than somebody who simply began. And individuals who really feel a selected methodology isn’t working for them will usually swap, so the projected ten-year effectiveness of 1 methodology isn’t particularly significant, anyway.

Feedback like this name into query whether or not Upstream has actually shifted away from a LARC-first method. Given the group’s acknowledged purpose of scaling up “particularly in states the place entry to abortion is restricted,” sources who spoke with RNG say they fear a coercive counseling mannequin might add to the large strain individuals are already feeling round contraception in states which have banned, or are prone to ban, abortion.

Regaining belief

Upstream says its mission is to “increase alternative by decreasing unplanned being pregnant throughout the U.S.,” in line with its most up-to-date 990, the general public disclosure that nonprofit organizations are required to make yearly. In different phrases, the linkage between poverty and contraception continues to be there. The group’s monetary backers are much more express about this.

For instance, one in every of Upstream’s main funders is Blue Meridian Companions, an anti-poverty philanthropic collaborative that counts the Invoice and Melinda Gates Basis and MacKenzie Scott amongst its donors.

“Upstream’s mannequin presents a transparent method to disrupt the hyperlink between unplanned being pregnant and intergenerational poverty by placing reproductive alternative in a girl’s arms,” Blue Meridian’s web site reads. In response to that web page, Blue Meridian’s funding in Upstream thus far totals $60 million over seven-and-a-half years.

Even the concept that decreasing unplanned being pregnant is an inherently fascinating purpose is outdated, specialists who spoke with RNG stated. Whereas individuals who need to forestall being pregnant ought to completely have entry to no matter contraceptive methodology they need to use, “you don’t truly need to forestall each unintended being pregnant … typically leaving issues as much as likelihood and being ambivalent is the best method to go for somebody,” the nameless researcher stated.

Dehlendorf agrees.

“The purpose shouldn’t essentially be extra deliberate pregnancies. It must be extra pregnancies individuals are pleased with,” she stated, which might require coverage options past contraception that “meet individuals’s wants as they themselves outline them.”

Nevertheless, all the specialists who spoke with RNG acknowledged that it’s clear Upstream is right here to remain. One even stated members of their employees have begun showing routinely in federal coverage conferences.

“They’ve more cash than anyone on this house aside from Deliberate Parenthood,” Crear-Perry stated.

However to regain belief within the sexual and reproductive well being house, Dehlendorf stated, “I believe it must take actual, genuine accountability for the hurt that they’ve precipitated, and transparency shifting ahead.”