A growing campaign turns positive symbols into positive realities
by Chael Needle
Since the early days of the epidemic, an HIV-positive status has inspired—and been made to inspire—feelings of fear, shame, self-doubt, and a raft of other emotions that often send individuals living with the virus out to sea on a lonely journey. One of the ways the HIV/AIDS community has shored up their lives has been to reclaim “positive” as an act of optimism and empowerment.
Alere Inc., a leader in diagnostic and monitoring tools for HIV and many other diseases and conditions, has created a crowdsourced campaign to help those living with or affected by the virus to do just that—invest new and self-affirming meaning in their lives.
By creating their own visual definitions of “positive” and telling their stories, individuals around the world join a network of affinity and support and also make evident that living positive is a reality.
Make (+) More Positive also aims to reduce stigma, one of the thornier barriers to testing and treatment, and, ultimately, the end of AIDS. As the narratives that accompany some of the positive symbol artwork show, stigma often prevents individuals—indeed, whole communities—from seeking resources that could help to sustain and enrich their lives.
For every positive symbol completed by hand or with the campaign Web site’s drawing tool (and every “Like” on its Facebook page), Alere will donate one of its rapid screening tests for PSI [see cover story, this issue] to distribute to areas that have been impacted by HIV and/or have less access to services, whether in Africa or Europe, India or the U.S. The company’s plan is to donate up to one million HIV tests, including its Determine HIV 1/2 Ag/Ab Combo Test, which can speed up initial results by screening for antibodies and antigens. Rapid testing is important because early detection, when the virus is most infectious, can increase opportunities for treatment and prevention.
It’s hard of course for a for-profit company to enter the philanthropic arena without it seeming like spin, but Alere is willing to risk critique in order to move forward with its commitment to empower individuals to more easily take charge of their own health with the help of technical innovations in diagnostics, the discovery of new biomarkers, and health management resources that strengthen the relationship between patients and their care providers.
“We do think the campaign’s building and it’s doing the right things,” says Paul Hempel, Senior Vice President, Ethics and Compliance, at Alere, who asked to join the campaign as a spokesperson. At the Rome conference last year, where the campaign launched, Hempel was inspired (and a little surprised) to see how many scientists and key opinion leaders stepped up to create positive-symbol art. And there have been surprises on the ground, too.
Recently Alere brought its program to Houston, a city that has been hit hard by the epidemic but which has responded with an expansion of free resources, particularly in underserved minority communities. For this youth-targeted testing initiative, Alere joined other companies in providing tests and helping out with publicity. 8,000 individuals tested in the span of about three weeks.
“While these kids waited, they were nervous; they were waiting for their results,” says Hempel, who spent time with them during the testing process. “So we set up this art space where they could come and draw, and their initial reaction tended to be, ‘I’m not sure I want
to draw a positive symbol.’ Almost like, ‘I don’t think I want to be part of that.’”
But then Paul and his colleagues explained that they could be “part of the solution”—that drawing a positive symbol would help provide a test for someone else, in their city or elsewhere in the world. “And suddenly they got involved. They were very creative, and we got hundreds and hundreds and hundreds, probably thousands of positive symbols there. And it was really heartening!”
The objective of the campaign, when met, can have a positive domino effect, notes Paul. “The reduction of stigma leads to increased testing; increased testing leads to increased treatment; increased treatment leads to a reduction of the spread of the disease. It’s pretty straightforward and I think, as people realize that, views change, policy changes, and we actually have a chance of getting rid of this disease.”
Paul knows the benefits of disabling the power that stigma can hold over us from a personal perspective, as well. Diagnosed as positive a little over two years ago, he decided to be vocal about his status and explained why others, if their situation supports it, might consider doing so as well. “One reason is: It’s clear to me that unless you’re out there and people know what you’re dealing with, they can’t support you. And you need support through this. It’s pretty terrifying—at first. Although once you get treated, it really isn’t very terrifying. It’s not very much different than having diabetes; it’s probably less intrusive than having diabetes in many ways today.
“But the other piece of it is: If people see other people living successfully with it and aren’t afraid to talk about it, it really reduces the level of stigma for someone.” Also out as gay at Alere, Paul is energized by the support of his professional colleagues, inside and outside of the company, as well as the support of his three children, now grown, and his husband, Bruce.
His ability to live in positivity is “partly because I have just refused to accept stigma from people around me—or from myself. I decided: I’ve got to get over it. Let it move out [so I could] just live a normal life and recognize it’s the same kind of thing you would have if you were dealing with being a little overweight, or living with a heart condition. You take care of yourself! You get out there; you don’t let it rule you—you rule it.”
The campaign has enjoyed—and continues to enjoy—a learning curve. “One of the lessons we’ve learned is that you can do more working with a group like PSI than you can alone, in terms of going in and addressing some of the other kinds of needs [a community has] that we can’t ever address,” says Paul, noting that PSI works with a number of different corporate organizations that address an array of issues, from clean water access and child nutrition to reproductive health. In light of this whole-person, capacity-building approach, something like HIV testing becomes more possible. “And you can begin to actually affect the lives of people that you’re trying to reach, and begin to affect the course of the disease in the communities you are trying to reach, as well.” Alere believes in the power of public-private partnerships, with each sector contributing its expertise. In the context of Alere, says Paul, emphasis on development and innovation has led to new tools and treatment strategies that, when developed and employed in those communities most impacted by HIV, have improved healthcare outcomes.
As a person living with HIV he has been particularly attuned to the successes of non-profits and NGOs in their ability to fight the epidemic in underserved areas. “They provide legitimacy to treatment and prevention messages, donor funding, political pressure. They ensure that resources get to where they are needed most and establish a robust communication network in the most remote parts of the world to facilitate access to care and allow for the ongoing exchange of information.”
Along with seeking to expand the campaign, Alere is preparing to introduce its latest product—a viral load analyzer, which complements the Alere Pima, a CD4 cell count analyzer. Both can be brought out into the field, notes Paul, and can help determine if an individual who has tested positive for HIV might need treatment sooner rather than later. “One visit—[healthcare practitioners] will be able to see the antibody test [results], viral load, CD4 levels, and they’ll be able to get more people onto treatment much more quickly,” says Paul Hempel, in closing.
This trifecta of technology is important as very often a large percentage of individuals do not return for test results in traditional testing scenarios. Why? Many researchers have singled out—you guessed it—stigma as a major reason. As Make (+) More Positive proves, however, there are a boatload of reasons why knowing your status can help turn the tide.
Chael Needle is Managing Editor of A&U.