New U.S. HIV/AIDS Action Plan is More Strategic on Services but Overlooks Realities, Needs of Key Populations, Say Advocates
December 11, 2015
The Strategy, first released in 2010 and recently updated through 2020, outlines what must be done to address HIV in the U.S. in the coming five years. The Federal Action Plan is meant to explain how and when specific federal agencies intend to do it.
Those who are most impacted by the actions outlined in the Federal Action Plan -- groups representing people living with and working in HIV and intersecting fields, many of whom submitted recommendations for the updated Strategy and suggested actions for the implementation plan - quickly evaluated the plan and issued responses.
An echo of advocates' consistent calls for breaking down service-delivery silos comes through in the Federal Action Plan's focus on integrating services and care. A statement from Positive Women's Network - USA (PWN-USA) , a national advocacy network by and for women living with HIV, applauds steps to integrate behavioral health and supportive services with primary care. Behavioral health services and wraparound assistance, such as child-care, vocational, educational, housing, nutrition and transportation services, are an essential part of access to care for many people living with HIV or vulnerable to becoming HIV positive. Says Naina Khanna, PWN-USA's executive director: "These are advances that advocates, including members of PWN-USA and allies we collaborate closely with, have been fighting for for years."
Particularly groundbreaking in the Federal Action Plan is the integration and expansion of intimate-partner violence (IPV) screening and services into primary care. Increased focus on IPV has long been a key demand of advocates in light of decades of anecdotal experience and a mounting body of research showing the brutal and disproportionate impact of violence in the lives of women living with and vulnerable to HIV .
"What's led us here is the advocacy of women-centered agencies," says Gina Brown, a member of the President's Advisory Council on HIV/AIDS (PACHA), which has a key role in monitoring the Strategy's implementation. "We're looking at IPV not only as a driver of the epidemic, but as something that is keeping our women sick." According to Brown -- who has spoken out about her own experience living with HIV and surviving IPV -- a next step for advocates is to demand universal standards and best practices for IPV screening. "If Agency A is only asking [about IPV] upon intake, and Agency B is having the conversation with clients every time they come in, then Agency A's clients may be going through IPV, and they'll miss it."
Missed Prevention Opportunities
Although the language of HIV prevention is suffused throughout all Strategy goals, advocates have identified several missed opportunities for the Strategy to advance what one might call a "culture of prevention" -- addressing issues at their roots, rather than once those impacted are facing dire circumstances.
For instance, PWN-USA's statement points out that "the plan appears to call for testing, prevention and treatment of immigrant populations only in the context of detention facilities rather than addressing systemic barriers â¦ as well as problematic policing practices that might place immigrants in detention facilities in the first place."
In addition, while the commitment to IPV screening and services across the Federal Action Plan is a giant leap in the right direction, another enormous step would be a deeper commitment to trauma-informed practice.
"My biggest hope moving forward is for people to understand trauma broadly to include not only IPV, but also childhood sexual and physical abuse and neglect, community violence and structural violence such as racism, homophobia, transphobia, xenophobia and mass incarceration," says Edward Machtinger, M.D., director of the Women's HIV Program (WHP) at the University of California, San Francisco, and a pioneering researcher on the intersections of trauma and HIV. "It is this cumulative trauma that is the prime culprit that predisposes people to HIV, especially in communities color, and leads to most of the poor health outcomes seen among my patients living with HIV."
Another example is in the realm of employment services, which are identified as a vital need in the Federal Action Plan. According to Mark Misrok, president of the board of directors of the National Working Positive Coalition, the Strategy's original executive order directed the Equal Employment Opportunities Commission (EEOC) to submit "recommendations for increasing employment opportunities for people living with HIV and a plan for addressing employment-related discrimination against people living with HIV." Misrok is disappointed to report that there's no evidence of the first aspect of the directive being achieved, which he sees as a tremendous wasted opportunity. "[EEOC] only presented a plan for addressing employment-related discrimination against people living with HIV" -- again, a reactive as opposed to proactive approach.
As PWN-USA's statement indicates: "A change in internal policies and practices of institutions, organizations and programs coupled with enforcement [of federal laws] will ensure stronger protections for all people living with HIV, including trans women, who face the highest levels of discrimination in employment and housing."
Silence Is Still Death -- and It's Deafening
"U.S. health officials can no longer ignore the elephant in the room, or perhaps more accurately, the cell," wrote Megan McLemore of Human Rights Watch last August. She emphasized, "One of the risk factors for HIV that needs to be addressed, particularly for sex workers, transgender women and women of color, is the criminal justice system."
There is a particularly clamorous silence on this topic in the Federal Action Plan, evidenced powerfully by the omission of any mention of sex work or the heightened HIV risk faced by sex workers -- who ought to be considered one of the "historically underrepresented communities" supported by the Strategy.
"Not one mention of sex work even though the most egregious state laws criminalizing HIV are those specifically targeting prostitution," say representatives of four organizations dedicated to research and advocacy around sex work in a joint statement responding to the Action Plan. "Not one mention of sex work, even when sex workers are recognized by other national governments globally and international health organizations like the World Health Organization as a vital partners in order to end the HIV epidemic."
Bamby Salcedo, founder and president of the Trans-Latin@ Coalition, which advocates for the needs of transgender Latino/a immigrant communities, sees this silence as a form of insidious institutional violence. She says it contributes to the physical violence and murder to which transgender women are especially vulnerable. "When you don't do something specifically and intentionally to address the epidemic in this community, it sends a message of invisible violence," says Salcedo; "It continues the erasure of our community."
"Do More, Better and Faster"
In the Strategy, transgender individuals are a priority population without indicators -- meaning that the Strategy states there is need for urgent movement to support this community, but it does not put forth a way to measure if that support is having its intended effect. The same is true in the Strategy for measuring HIV stigma. According to Barb Cardell, vice-chair of the People Living with HIV (PLHIV) Caucus and board chair of PWN-USA, "There is so much else about HIV-related stigma that isn't included" -- for instance, promoting honest discussion about personal biases as part of technical assistance for HIV providers.
Action items to address stigma include steps to inform states of the Department of Justice's guidelines for reforming HIV-specific criminal statutes. But Lt. Col. Ken Pinkela, a member of the advisory board of the SERO Project, which combats HIV stigma and criminalization, believes the Federal Action Plan could have gone further and included language supporting legislation such as the REPEAL Act -- a bipartisan House anti-discrimination bill recently introduced in the Senate.
"The Action Plan isn't law; it's guidance," Pinkela explains. "It could have included general language around 'working with legislators toward repealing HIV-specific statutes'" without creating a conflict of interest by referencing the specific bill. "Where federal agencies go, the states usually will follow," he says.
Finally, the Federal Action Plan commits to "promot[ing] public leadership of PLHIV" -- but Cardell points out that it provides no specifics for ensuring truly meaningful involvement of people living with HIV.
"However," Cardell says, "We are the 'persistent advocates' mentioned in the Strategy -- 'pressing all sectors to do more, better and faster' -- and we will continue to provide input in the hopes we can be seen as the HIV subject matter experts."
Stay tuned for statements from the PLHIV Caucus and other coalitions that continue to work, as Khanna says, to "hold all the concerned agencies and the next administration accountable for keeping the promises of the [Strategy] -- and filling in the gaps that remain."
Olivia Ford is a contributing editor for TheBody.com and TheBodyPRO.com.
Copyright © 2015 Remedy Health Media, LLC. All rights reserved.
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