For example, this week activists in Los Angeles have been protesting against the U.S. Trade Representative’s secret talks with negotiators from around the world aimed at establishing the so-called Trans Pacific Free Trade Agreement (TPP ), which could eventually include every Pacific Rim nation from Vietnam, Thailand, and Japan to Australia, Canada, Mexico, and Russia. Among other things, the TPP would include a radical expansion of patents that would shore up profits for Big Pharma and restrict affordable generic medicines.

It’s not only the U.S.—next week, after protracted and largely secretive negotiations, and despite unyielding protests, the European Community and India will likely make a deal on an FTA—a so-called Free Trade Agreement. Contrary to what the name suggests, it contains provisions that would further strengthen monopoly rights for pharmaceutical companies and limit India’s capacity to prioritize patient rights over patent rights, and supply the rest of the world with cheap generic medicines.

Along the same lines, the U.S., Japan, Australia, Switzerland, and several EU countries have already signed ACTA—the secretive  Anti-Counterfeiting Trade Agreement—a proposed multilateral agreement which would establish a new international legal framework far more restrictive than currently exists under the WTO, the World Intellectual Property Organization (WIPO), or the United Nations. Have a look at this great little video to see what it means.

The U.S. has also been pushing many African countries to pass their own restrictive intellectual property legislation, again committing them to policies that are much more restrictive than what is currently permitted under TRIPS—the WTO agreement on trade-related aspects of intellectual property rights.  Some of this takes the form of so-called “anti-counterfeit” laws, which purport to protect consumers by outlawing fake products, but really apply heavy-handed solutions to problems best dealt with by other means (such as in the case of medicines, strengthening medicines regulatory authorities).

Now the U.S. Department of Commerce is organizing an Africa-wide intellectual property forum in Cape Town in early April. Again, this is presented as an effort to protect starving African artists and musicians from exploitation, or to promote African growth through innovation. But the agenda is all about IP strengthening and enforcement and not about stimulating innovation. There is no discussion planned of the risks that strict IP enforcement holds for health (limited access to generic drugs), agriculture (expensive genetically-modified seed), and education (access to educational resources), among many others. Africa has far, far more to lose than to gain from stricter IP regulation and enforcement—not least because the EU, U.S., and Japan own the vast majority of patents as this great visual shows.  And if African nations want to stimulate innovation, it is highly questionable whether patents are the right way to go. Intellectual property protection has never been shown to promote economic development in developing countries.

While many have rejoiced at the recent defeat of SOPA and PIPA, these other measures pose far more threat to the interests of ordinary people around the world—and because they’re being negotiated in secret, or through laws in a range of developing countries, they’re much harder to defeat.

Civil society organizations across the continent and the globe—from MSF to HealthGAP, to the Third World Network and librarians’ groups—are alarmed and outraged at the upcoming meeting and are mobilizing against it. We should all join forces with them.

Can you tell us in a nutshell what your film is about?

They Go to Die is about the lives of four former mineworkers who were sent home from the mine after contracting TB and HIV in the South African gold mines. These men—like thousands of men each year—are affected by a process known as “sending them home to die” that occurs in the industry, where migrants become sick and are sent home with little or no continuation of care, follow up, or chemotherapy.

As we work on the film, I think the surprising feature is that it will bring out the life and joy that these four men share with their families. We all know that diseases cause morbidity and mortality, right? We don’t need to be told that again. That’s what we learn in school. But what is often overlooked is the human story; the way it affects an organic, ever-changing infrastructure of family and community that plays a role in how an individual copes with disease. I am working as hard as I can to turn this human rights violation—all of this human suffering that goes on in this issue—into a positively cathartic experience. Not to just show the face of those “sent home to die,” but to show why it is important that this problem is resolved, because there are common threads of humanity to which we are all connected.

What is your background and how did you end up making a documentary about this issue?

I’m an epidemiologist, not a filmmaker. I actually chuckle when people refer to me as the director or producer. I don’t know what a producer even does. Alongside this film, I am concurrently doing a research project that defines potential contextual factors that increase TB and HIV vulnerability in male migrant populations in South Africa, specifically gold miners. I love research, but this film is important for a few reasons. First, the research showing that this is a problem is already there. We know what’s happening. We know what’s causing it. We know what to do. We know how to stop it. This is an issue that needs very little further information to solve it. To me, given the body of research that exists, doing more research borders the line of unethical as a researcher.

As far back as the 1903 South African Presidential Commission, we see this problem: “The extent to which miner’s phthisis [TB] prevails at the present time is so great that preventative measures are an urgent necessity, and that the number of sufferers in our midst is a matter of keen regret.” That was more than a century ago. In 1995, Judge Ramon Leon’s commission issued a damning report on health in South African mines and said “radical” steps needed to be taken to address this. Today, his findings still hold true.

So those in decision-making power—the government, union, and industry leaders—know the issues, and know how to solve it. It is a matter of accountability; the historical narrative over the past century has been one of diffused accountability between these groups. They continue to pass the ball of responsibility. So the purpose of the film is to raise awareness and education in both the research/global health community and in civil society, placing outside accountability on the issue as a whole.

It is such a huge issue and a strong story. Why do you think the problem does not get much media coverage, even within the region?

This is a problem is out of sight, out of mind. When a physical collapse in a mine occurs, you hear about it immediately. It's there, it's in your face as a tangible, discreet occurrence. But with disease, it is behind the curtain, and much harder to pinpoint. TB deaths far outweigh the casualties of a physical injury, but if the miner has been sent home, his death is not in the spotlight – it falls in the cracks and crevices of the African continent. Coupled with this diffused accountability, certainly no one notices. And certainly, no one cares.

This is a frightful situation. We have seen amped up rhetoric: on paper, everyone is greatly concerned about health and safety on the mines. I mentioned the two reports earlier, and those were just two examples of fiery rhetoric that rhythmically becomes extinguished by apathy. In reality, few people with decision-making power seem to be concerned at all. The most recent audit report (2008) could not be more blunt: “There is a pervasive culture of non-compliance to legislative requirements (on health and safety). Inquiry after inquiry makes findings to the effect that risk assessments are not conducted, training is not done, early-morning examinations are not done, equipment is not maintained and the list goes on and on.” The commission’s own words were “the list goes on and on.” What a sad state of affairs.

Given the existence of effective treatment for TB and mining companies’ huge resources, it should be easy to dramatically reduce the number of TB deaths among miners. Why do you think this has not happened?

Fifty years ago, our barriers to surmounting disease were biological—we didn’t know how to treat diseases, what proper methods were, etc. Today, our barriers are man made. They are caused by human rights violations such as this. This isn’t rocket science. There is no reason why we cannot have zero TB cases in the mines. There is some movement: the Chamber of Mines has set forth goals to reduce silica, TB, and other diseases over the course of several years, but this issue is something that can be stopped now. Current goals and deadlines are frivolous and allow for complacency. We need to stop the BS. We know what to do.

In the 1930s, which predates TB chemotherapy, the granite mines in Virginia had a terrible scourge of TB and silicosis, but they used the technology at the time, engaged the community, and actively sought to surmount the issue. And they did, with no TB medication and actually using South Africa’s silico-TB reports as the gold standard for what to do. The difference between Virginia in the 1930s and South Africa in 2012 is that South Africa has an endless pool of labor to draw from. If the Virginia mines lost a worker, they lost productivity. If South Africa loses a miner, they can easily replace him with one of the many desperate for a job. It is easier to release the sick man and hire a healthy worker. This effectively shifts the burden of disease back to the home of the man. This is a human rights violation of considerable dimension.

This is not entirely the fault of the industry itself. Yes, the mining industry does have a finger pointed at it, but there is legislation that allows this to go on. Miners, legally under statutes in South African legislation, are a population apart. Their rights are under separate jurisdiction than any other type of occupation (such as agriculture or construction). This legislation is outdated and inadequate. In terms of legislation for compensation, one mining physician wrote an op-ed titled, “Miner’s Compensation: Who Cares?” which lambasts the complicated legislation that makes receiving compensation virtually impossible (a Deloitte audit showed only 400 out of 28,000 men—1.4%—received compensation when they were sent home). But technically the legislation is there, right? So they can say, “well Mr. Mkoko is entitled to compensation.” But he will never get it. There are masks such as this that each decision-making body hides behind.

You've said this is not just a film and you see it as part of a larger campaign to bring an end to the problem. What else are you doing, besides trying to complete the documentary?

Primarily, the film is hopefully going to be used as a tool in three discreet ways. First, using it in a broader academic discussion of the issue will seek to spark future research on the issue to fill what gaps in the research remain. Secondly, showing it in this setting will also seek to promote dialogue and discussion on the issue among “outside” decision makers: those organizations that play a role in global health as a whole. These two goals will hopefully forward the discussion on solving the issue in a concrete manner and place accountability on the inner circle of decision makers that can actually make change (the industry, South African Government, and union).

Lastly, the film will hope to be aesthetically stimulating and approachable by a wide audience, educating and motivating civil society to place accountability on all powers involved. The goal is to have the film be a unifying thread between organizations in these categories. Then we will have one large push: a unifying push to solve this issue.

You’re still trying to complete the film. How can people support you in your project?

This project is taking a different approach to what most films do. The ultimate goal of most filmmakers is to, obviously, create a film. Thus the call-to-action is after the film is made: you watch the film, and they tell you how to follow up. But like I said, I am not a filmmaker, and my ultimate goal is solving this issue. I am simply using the film as a tool to do so. So I am taking a bit more of a proactive approach, using parts of the rough-cut I have as a means to augment a discussion of the issue. There is no reason I should wait until the film is completed to raise this issue in the academic and global health arena. So instead of pulling the issue, I am pushing it, hoping to seed awareness that leads to development down the line.

Support could come in many ways. Global health and human rights organizations could come on board to support the film’s goals, universities could host a pre-screening, and individuals could sign up on the website. Like I said, the film will hope to be a nexus of all of all interested organizations and individuals. At the moment, the major holdup is funding, which has primarily come from grassroots efforts where we have accepted donations on the website. All the filming is completed but we need funds to finish the film, promotion, and entering it into festivals.

Our approach is very proactive and we continue to update ways for individuals to take action. That’s why signing up is so important. It’s not signing up to get a newsletter or something, but it’s signing up to be on call, so when we say, “we’re pushing for X or Y,” it wont just be me screaming in the wind, but rather backed by numerous individuals.

The amount of information available can of course be overwhelming but there are a few resources I’ve come to rely on more than others. Here are four that I often point grantees to:

Katya’s Nonprofit Marketing Blog is a great first stop. Katya Andresen  is the Chief Strategy Officer at Network for Good and a former foreign correspondent for Reuters. I subscribe to receive Katya’s blog by email, and every day I receive a short post containing at least one useful tip. This is often about online media, but much of the advice is relevant for communication in any context.  One day’s post might contain four tips for ensuring a great website. Another will outline five ways to use social media for donor engagement. It’s a quick and easy way to get good advice in digestible chunks.

Beth Kanter is probably THE social media guru for nonprofits, and her blog is aptly titled Beth Kanter’s Blog. Recently her posts have been focusing on data and measurement—how nonprofits can keep track of and measure the impact of their social media and online presence. Beth has also developed a great framework for assessing the level of an organization’s social media use. It has four stages—crawl, walk, run, and fly—and is really useful to help nonprofits assess just where they are, and work out how to progress.

For anyone interested in the use of mobile phones and mobile technology for advocacy or development, Mobile Active is an essential resource. They call themselves a “global network of people using mobile technology for social impact,” and their site and mailing list contain a wealth of resources. They recently launched a Mobile Media Toolkit—a wonderful resource for organizations and individuals who want to learn how to create and share media using mobile phones, as well as how to engage their audience. They also provide guidelines for mobile security, which is very important for members of vulnerable groups.

Former Greenpeace campaigner Chris Rose has become something of a guru to many of us within the Public Health Program and his Campaign Strategy newsletter is invaluable. Each one provides insights on results-driven campaigning, through the example of real-life case studies. The most recent looks at a campaign to reform the European Union’s byzantine fishing regulations. He shows how activists are trying to get people to care about this seemingly dry, impenetrable subject, by constructing a fishing hut that will travel around Germany. The hut was inspired by an iconic photo that helped launch German Chancellor Angela Merkel’s political career. It’s a must-read for anyone grappling with how to get people to connect emotionally with an issue that appears technical and remote.

How interesting that an exception in the otherwise “sacrosanct right” to protect patents can be made to safeguard business interests for the big banks (the same banks that have been blamed for endangering the global economy through their reckless speculation), while no such concession is even thinkable when it comes to safeguarding access to lifesaving medicines for millions of patients around the world.

On the contrary—despite the best advocacy efforts of the Access to Medicines movement over the past 15 years—we have witnessed a progressive strengthening of pharmaceutical patents, in duration, scope and geographical applicability. As a result, patent monopolies leading to high medicines prices preclude treatment for an increasing number of patients living in developing countries (80 percent of the world population).

For instance, a full treatment course for hepatitis C—a disease affecting 180 million people worldwide—costs up to $50,000 thanks to patent-protected monopoly pricing, and remains virtually inaccessible for the majority of people living outside of the U.S. and Europe (where health insurance covers the high price of treatments).

Moreover, both nationally and in the international arena, the U.S. government is striving to secure evermore rigid and wide-ranging patent protections on medicines that leave less and less flexibilities to safeguard access. For example, according to a document leaked recently from free trade negotiations between the United States and countries on the Pacific rim, the U.S. is pushing for patent provisions that delay the entry of generic drugs into the market, and US negotiators propose eliminating the ability to challenge pharmaceutical patents before they are granted.

Yet such pre-grant opposition has been used to great effect by treatment activists in India and Brazil, where civil society groups have challenged “frivolous” patents on essential drugs such as HIV/AIDS and cancer medicines.

Pre-grant opposition is a crucial element of any reasonable patent regime, an important mechanism to balance the public interest when providing monopoly rights and to help prevent abuse. For example, as part of their “product life-cycle management,” pharmaceutical companies routinely seek to extend patents far beyond the initial 20-year term through so-called "evergreening": applying for follow-on patents based on trivial changes of an existing medicine such as using a different crystal form of the same drug, or converting a tablet to syrup or modifying the dose. Applying a strict interpretation of patent law, such trivial changes do not comply with the three key criteria for the granting of a patent: novelty, inventiveness and industrial applicability—where inventiveness is understood to mean an innovation that is nontrivial to someone "skilled in the art."

In reality, many national patent offices do not have the capacity to examine patent applications closely, and tend to grant such frivolous patents unless someone opposes it. Patent challenges have proven an important tool against abusive patenting of medicines, and are critical in safeguarding access to affordable generic medicines. The U.S. government, however, is all too eager to see this option removed from national patent law of its trade partners.

So what is the difference?

In the case of medicines the pharmaceutical industry, well-known for its powerful lobby in DC, is holding the patents in question, and uses all its power to protect and enforce them through US and international legislation. In the case of banking products and services, the powerful Wall Street banks are the ones whose interests need to be served, and in that case it seems that US legislators seem only too willing to compromise on patent rights, despite touting constantly how protecting intellectual property rights is one of the fundamental pillars of “fair” trade. (One recent example: Hillary Clinton speaking in Hong Kong this week.)

While legislators in the U.S. are pushing a Wall Street exemption to patent law, threatening the income of many smaller businesses in order to protect large banks against “frivolous patents,” millions of people around the world are being denied access to lifesaving medication because the US is pushing to protect just such frivolous patents.

At first glance this may seem like hypocrisy, but it’s actually perfectly consistent. In each case, the beneficiaries are the rich and powerful. When it comes to medicines, the losers are millions of ordinary citizens who cannot afford the lifesaving medicines they need.

But these  positive developments should not blind us to a range of problems and concerns (such as research in poor communities showing that expenditure on mobile phone use often comes at the expense of other needs, such as food). Two recent articles highlight the fact that the digital divide is very much still with us, and in fact new kinds of divides may be opening up.

In a paper published by Audience Scapes [pdf], Gayatri Murthi acknowledges the unprecedented proliferation of mobile phones in the developing world: the developing world’s share of mobile phone subscriptions increased from 53% in 2005 to 73% in 2010; mobile phone subscriptions increased by 16% in the developing world last year, as opposed to 1.6% in the developed world. But she goes on to show that gender and income disparities mean that not everyone is able to reap the benefits of the growth in mobile penetration.

In South Asia, Africa, and the Middle East, men are much more likely to have access to cell phones than women. In Sub-Saharan Africa, where the “mobile divide” is slightly smaller than in the other two regions, a woman is 23% less likely to own a mobile phone than a man. Unequal educational opportunities present another divide. For example, 93% of Kenyans with formal education had access to a mobile phone, as opposed to 50% of those without. Since a higher proportion of men than women have access to formal education, this reinforces the gender imbalance.

Furthermore, according to Murthi, women are less likely to receive information via mobile phone, relying more in interpersonal communication. This challenges assumptions that new technologies are in and of themselves, going to democratize the information environment.

In addition to gender, Claire Melamed, a self-proclaimed “technological optimist” highlights some other divides, in a recent blog post on Global Dashboard.

Firstly, there’s a geographical divide: while heavily populated areas have excellent signal coverage, there are vast expanses of almost every African country where there is no signal at all. Secondly, a literacy divide:  even when people have mobile phones they may not be able to take advantage of access to a range of information services if they cannot read (despite the existence of projects that use mobile phones to promote literacy). And finally, there’s a financial divide: for example she says, despite the advance of cheap mobile banking, in parts of Kenya making a money transaction using the MPESA mobile banking service costs the same as a bag of maize.

These two articles reinforce the fact that as exciting as the advances in mobile technology are, they’re not a “one size fits all” solution for promoting development and democracy—and as much as they may help us solve some problems they are also creating new divides and inequities.

We put some questions about Project Prevention’s latest move to four reproductive rights experts, two of whom have been leaders in the opposition to Project Prevention in the United States.

The women are:

• Elisa Slattery, Regional Manager and Legal Advisor for Africa for the Center for Reproductive Rights, Nairobi, Kenya
• Betsy Hartmann, Director of the Population and Development Program and Professor of Development Studies at Hampshire College, Amherst, Massachusetts
• Anne Gathumbi, Program Manager of the Health and Rights Unit at the Open Society Initiative for Eastern Africa, and founding member of the Coalition on Violence against Women in Kenya, Nairobi
• Lynn Paltrow, Executive Director of the National Advocates for Pregnant Women, New York City

Can you give us some background on Project Prevention and its founder, Barbara Harris?

Betsy Hartmann: Project Prevention used to be called CRACK—Children Requiring a Caring Kommunity. It was founded in 1997 by Barbara Harris, a homemaker from Stanton, California, with the intent of preventing births to drug-addicted women by offering them cash incentives to be sterilized or use long term contraception. In a logic reminiscent of eugenics, CRACK claimed that the children of these women would be a burden on society, winding up in special education classes, foster care, etc. The original billboards proclaimed: "Don't Let a Pregnancy Ruin Your Drug Habit." There was and is no concern for providing these women with drug treatment.

CRACK spread into a number of U.S. cities where staff targeted poor communities of color, sometimes accompanying police on their neighborhood rounds. What was truly astonishing is how much positive press CRACK, and later Project Prevention, received. Fortunately, however, reproductive rights, public health, and harm reduction groups and agencies started speaking out against the organization and exposed its right-wing funding.

What was your reaction on hearing that Project Prevention is now moving into Kenya?

BH: I am extremely disturbed that Project Prevention is moving into Kenya. Concerned reproductive rights, HIV/AIDS, and public health organizations and activists should do all they can now to make sure the organization does not take root in the country.

Anne Gathumbi: We have many concerns with attempts to use money to coerce women into long-term birth control. Interventions for addressing the needs of women with HIV need to be holistic, integrated, respectful, and responsive to the needs of both women and children, and must be based on evidence. Offering money as an incentive to sign up for birth control is coercive and not based on any evidence that it works. What we need are programs that support prevention of mother-to-child transmission (PMTCT). These programs are available in Kenya, and they have been well documented and proven to be effective.

Elisa Slattery: Project Prevention is part of the problem, not part of the solution. By fueling negative perceptions and sowing misinformation about HIV-positive women as mothers, it only adds to the stigma and discrimination that interfere with HIV-positive women receiving key reproductive health care, including family planning services, services to prevent mother-to-child transmission of HIV, and maternal health care.

Lynn Paltrow: I was appalled, but not shocked, to learn about their latest international endeavor. Project Prevention started by focusing on one set of highly controversial and stigmatized health issues—pregnancy and drug use—and has now expanded to another—pregnancy and HIV.

According to its website, “Project Prevention offers cash incentives to women and men addicted to drugs and/or alcohol to use long term or permanent birth control.” But in Kenya, so far the discussion has focused on IUDs for women living with HIV. Is long-term birth control less problematic than sterilization?

BH: What women living with HIV need are health services that provide safe, voluntary contraceptive options and the kind of prenatal care and antiretroviral regimens that reduce the chances of their babies being born HIV-positive. Giving cash or in-kind incentives for women to undergo sterilization or long-term contraception is a form of coercion and violates reproductive choice and rights.

They push women into making decisions about birth control based on money, rather than which contraceptive is the healthiest and best choice for them. Project Prevention will only further scapegoat and stigmatize HIV-positive women. In truth, the organization's main mission is ideological—eugenics with a 21st-century face.

LP: In addition to the legal, ethical, and moral questions raised by offering money to financially vulnerable women to use certain devices and medications, there are many medical questions that need to be addressed concerning the effects of various methods of long-acting birth control on the targeted women. Depending on a woman’s age and health, long-term contraception may effectively prevent her from ever procreating again.

AG: This is problematic on many levels. First, women living with HIV have specialized health needs. Certain long-term contraceptive devices have been found to result in serious health problems for some women. This is not a decision that should be taken lightly or rushed into for the lure of much-needed cash.

Second, it treats women with HIV as persons lacking capacity to determine the right health choices for themselves and their families. This is a discriminatory attitude that portrays women with HIV as irresponsible and reckless persons. In reality, women living with HIV can and do give birth to healthy babies. Any reasonable woman provided with proper care and factual information will make the right choices regarding her health and that of her baby.

Third, the practice of paying women to accept long-term birth control is not only coercive but also manipulative. Taking advantage of women in resource-poor settings by offering them money is paternalistic, tokenistic, and amounts to blackmail.

Project Prevention’s message focuses primarily on children. Do they offer any support for improving the lives of the mothers (aside from the one-time payment for sterilization or birth control)?

BH: Superficially, at best. Their main concern is to prevent those mothers from having children. If they really cared, they wouldn't be doing what they're doing.

LP: Project Prevention's strategies whether in the U.S. or UK regarding pregnant women and drug use, or in Kenya regarding pregnant women and HIV, have one major thing in common: their framework. The considerable public relations they do to promote Project Prevention all make it appear that the biggest threat to children's health is their own mothers. This model ensures that blame for medical and social ills will be placed on mothers, distracting attention from male responsibility and the public health, political, and economic conditions that profoundly effect the lives and health of children regardless of what their mothers do. Such an approach undermines public will to fund and support effective public health and development models that Project Prevention suggests, falsely, would be unnecessary if only certain women would stop procreating.

AG: This project takes a very demeaning and stigmatizing approach to women with HIV. It is a gross violation of women’s rights to coerce them into long term procedures that deny them the opportunity to make informed choices about their reproductive health and options. The project must be stopped before it takes root in Kenya.

Project Prevention put out a press release claiming that getting HIV-positive women on long-term birth control is the only way to “prevent the conception of a child who will only be born to die.” What is your response to this?

LP: Project Prevention is making claims that lack support in evidence-based research. Clearly the U.S. has extensive experience with preventing perinatal transmission of HIV—reducing it to two percent. So obviously targeting certain women and seeking to prevent them from procreating is not the “only” way to prevent children from acquiring HIV.  If we value the women of Kenya as much as we value women in the U.S., we should be promoting those same interventions to pregnant women and new mothers in Kenya as well.

BH: Project Prevention seems to assume that HIV-positive women will necessarily have HIV-positive children. This flies in the face of medical research and scientific evidence. And it ignores the fact that HIV is a chronic condition, not an automatic death sentence. With access to health care and the appropriate medicine, people with HIV—both adults and children—are living much longer lives than in the past.

AG: Project Prevention’s claims are way off the mark. Overwhelming evidence shows that transmission of HIV can be stopped by giving mothers the medicine Nevirapine before delivery. Project Prevention should direct its energies and resources to the already existing successful programs that reduce transmission of HIV from mothers to their babies. The Treatment Monitoring and Advocacy Project, for example, advocates for a four-pronged approach to caring for women and children in the context of HIV:

• HIV prevention in women of childbearing age;
• Preventing unintended pregnancies;
• Preventing vertical transmission (mother to child transmission of HIV);
• Treatment, care, and support for women, children, and families.

How do you feel about Project Prevention’s choice of target population: women who use drugs in the U.S., and HIV-positive women in Kenya. These are seemingly very different populations. Are there any links or commonalities?

BH: Definitely. For one, Project Prevention mainly targets women of color in the U.S., and now it is targeting African women. This is no accident. Project Prevention's racism is very thinly disguised. Essentially, while it targets specific vulnerable populations, it is trying to build support for eugenic and population control measures more broadly. I find this extremely worrying. There is a long history of population control organizations using incentives and disincentives to pressure poor people to be sterilized. These were roundly rejected at the 1994 UN population conference in Cairo, but they persist, for example in China and India. USAID unfortunately is talking about introducing incentives again into family planning programs despite their terrible history of coercion and abuse.

Africa has also become the main focus of population agencies given that in some countries birth rates remain high. Project Prevention is helping spread the message that African women don't deserve freedom of choice and quality of care in reproductive health programs. Also, there have been increasing reports of coercive sterilization of HIV-positive women in other African countries. This is a dangerous trend.

AG: The groups selected share similar characteristics: they are on the margins of society, ostracized, and suffer double marginalization. They are blamed for infecting their partners and children with HIV. There is a false assumption that they are weak and lack capacity to decide what is good and bad for themselves. This kind of targeting and labeling women further drives them away from coming forward to access services.

ES: In 2008, the Center for Reproductive Rights and the Federation of Women Lawyers-Kenya issued a factfinding report, At Risk: Rights Violations of HIV-Positive Women in Kenyan Health Facilities, which found that HIV-positive women are consistently discriminated against in the health sector when they try to exercise their reproductive choices. They are often denied comprehensive family planning information because of beliefs that HIV-positive women should not be sexually active and should not have children. And pregnant women living with HIV are often abused or neglected when they go to give birth in health care facilities, which threatens their health and undermines efforts to prevent transmission during delivery.

Project Prevention is asking people to donate $47 for the Kenya effort—$40 to pay to the woman, and $7 to pay the doctor. What is your message to people considering supporting this project?

BH: Don't do it. There are plenty of good reproductive health and HIV/AIDS treatment programs that need support. Fund them instead.

AG: Don’t. There are other interventions that are based on evidence and are respectful of the rights of women to exercise the choices that are available.

LP: People supporting Project Prevention will be giving money to a program that serves a political ideology over the needs of women, children, and families. Project Prevention suggests that there is a particular portion of the population that should not be, or that is not worthy of, reproducing the human race. The risk is that this will be easily interpreted to mean that this group is unworthy of being regarded as fully human and deprived of the rights, health, and support to which all human beings are entitled.

At the very least, no one should support this program without knowing much, much more about it. For example, in light of barriers to reproductive health care in Kenya, what health risks do various long-acting birth control measures pose to older women? Will Project Prevention work with programs distributing condoms, encouraging men to use them, and empowering women to ask men to use them? Does the project support HIV prevention and education efforts overall?

ES: The real solution to safeguard the lives and health of women and their children is to ensure that all women, regardless of HIV status, be allowed to exercise their reproductive choices and to obtain the necessary information and services to do so.

Project Prevention is headed by Barbara Harris, who started the organization in 1997. It was initially named CRACK (Children Requiring a Caring Kommunity). While her PR has become more sophisticated in recent years, Barbara Harris has famously been quoted as saying, “We don’t allow dogs to breed. We spay them. We neuter them. We try to keep them from having unwanted puppies, and yet these women are literally having litters of children.”

In Britain, human rights groups have been working actively to oppose Project Prevention. Initially it hoped to offer drug users money to be sterilized there too, but faced with the British Medical Association’s stringent ethical requirements, it decided to settle for offering payment for long-term contraception instead.

Now Barbara Harris has her sights on Africa, with her first stop in Kenya. There, she claims she has found a doctor who will insert intrauterine devices (IUD) into HIV-positive women for a fee of $7 a time. Not only will Project Prevention cover the cost, Harris also plans to offer women agreeing to this procedure a one-time cash payment of $40.

In a press release, the organization says that in addition to working to “cure” infants of AIDS, there is an urgent need to “prevent future pregnancies that may result in infants born HIV positive who would suffer daily and most will die before age 5.”

Of course, we can all agree that “All this human suffering is preventable.” That is precisely why treatment activists have been pushing for more widespread adoption of measures to prevent mother-to-child HIV transmission (PMTCT). The best PMTCT regimes currently recommended (which include putting the mother on full antiretroviral treatment) have been shown to make the risk of mother-to-child transmission virtually nonexistent (the WHO guidance on PMTCT suggests a risk of less than 2 percent; other estimates put the risk at less than 1 percent). If Barbara Harris were really concerned about ending suffering, she would be working night and day to ensure all HIV-positive women have access to and benefit from evidence-based HIV treatment and PMTCT services.

But Project Prevention seems to have no knowledge of antiretroviral medications (ARVs) or PMTCT, since they claim that getting HIV-positive women on long term birth control is “the only way” to ensure there are fewer babies born with HIV.

The move to Kenya certainly does not seem like an accident. From its inception, Project Prevention has targeted black women and poor women (read this expose from the Committee on Women, Population, & the Environment). And long-time opponents of Barbara Harris and Project Prevention point out that while she and her organization claim to be concerned about scores of unborn babies, they seem to show no similar compassion towards their mothers.

For example, she makes no mention of any need to offer ARVs or other medical treatment to women living with HIV. Nor is there any indication of medical follow-up for the women accepting the IUDs, or financial assistance should they subsequently want them removed. Furthermore, the ethics of offering financial incentives to influence what should be carefully considered medical choices, are highly questionable. The $40 being offered to Kenyan women represents a large sum in a country with an average per capita GDP of $315.

Right now a group of HIV-positive Namibian women are in court demanding redress and an apology from their government, after they were sterilized against their will and in some cases, without their knowledge—simply because of their HIV status (read the trial blog at endforcedsterilisation.wordpress.com).

On the surface, offering HIV-positive women money to accept long-term contraception may not seem quite as bad as coercive or forced sterilization. But both practices stem from the same root–the belief that certain women, including those with HIV, have no right to have children. This is a pernicious belief that is founded on nothing but ignorance and prejudice. Instead of working to restrict women’s reproductive choices, surely we should be fighting to ensure that all women have access to the medicines and health care they need for themselves and their families.

We started in 2006, when Balázs Dénes, our executive director, bought a camera. He had this idea in his mind for quite a long time, so when he went to the Drug Policy Alliance conference in the U.S., he took a cameraman with him. They produced a film about LEAP (Law Enforcement Against Prohibition), that became quite successful.

At that time I was working at HCLU in the drug policy program. I was doing a media monitoring project on drug policy issues. I was also working at a needle exchange in Budapest, so I was involved in harm reduction.

We started to do video interviews with my colleague Péter Sárosi, who is the head of HCLU’s drug policy program. We still make most of our films together: Peter is the reporter and director of the films and I co-direct, handle the camera, and do the editing. When we had the camera in 2007, we went to conferences, took the camera with us and started to do video interviews. But at that time we didn't know how to edit, so we uploaded a few clips just exported straight from the camera—some of which still got quite a lot of views.

In 2007, I attended the first Witness Video Advocacy Institute. There I learned basic principles of video advocacy, how to film and how to edit. It was really very useful for me. I really wanted to work with this and it really sped up the process of learning.

I came back and we started to do more and more video. It turned out to be so useful that I slowly shifted and now only focus on video advocacy.

You seem to produce a huge volume of videos—70 in 2009 alone! How do you manage this?

We have produced more than 200 videos so far. Well one main reason is that I work full time on this, I have the time to deal with it. On other hand, when we go to conferences, we cover a range of different stories. Once we do an interview with someone we ask about different issues, so we can cover four or five topics from a single conference. Also, we often produce very short pieces, two-to-three minutes long. We also record whole speeches at conferences. That doesn't require that much time.

How do you ensure your videos are focused and clear in their content and messages? It seems to be a challenge facing most people; they want to put everything into one short video.

It's a learning process and we also started with a lot of mistakes, but it doesn’t matter.  It starts with the planning phase. The main point is that you are doing advocacy and not documentary. So you have a really clearly set goal, and you focus on that.

Usually we have some sort of argument: for example, the argument that safer injection sites work to reduce hepatitis, HIV, and other health risks associated with injection drug use. We then ask conference participants and speakers about this issue. To an extent, we ask questions until we get the answers we are looking for. It's not distortion because we're all working for the same goal. Basically, we just help the interviewees get across their point of view as well as they can.

What is also really important is that both Peter and I work together on about 95 percent of the films we do. And we are both experts in drug policy and harm reduction. We've both written articles and book chapters on the topic and we've worked in the field for years and years. We know what the issues are, and what the important questions are.

But we always approach our films from the mindset of the general population who may never have heard of the issues. We try to avoid jargon and make the message as simple as possible so that it's digestible for the people. We're not producing the videos for other experts, but for everyday people.

Do you do a lot of planning before each video—working out your messages, deciding on your audiences?

The planning is mostly on figuring out what events we can attend, which conferences. We like going to conferences, because there we can get hold of a wide range of experts all in one place.

Other than that, we also look at what the hot topics of the day are, or topics we have not yet covered, and want to show.

The other part of the work we do is within the framework of the European Drug Policy Initiative (EDPI), which HCLU is coordinating. This initiative is to get together some European countries and fight for common goals and change in drug policy. Among things like common actions, researches or polls, we are helping colleagues from these countries with video advocacy on their own issues.

For example in Sweden we helped to fight for needle exchange in the capital city, since they still didn't have it, despite the 90 percent hepatitis prevalence among injecting drug users there ("A Heroin User in Stockholm" and "A Drug-free Sweden: By All Means?"). Or in Denmark, we showed the good developments in heroin prescription programs ("Waiting for a Legal Shot"). In the Netherlands, we made a film about the problems of drug tourists in Dutch border towns ("Smoking without Borders").

Within the EDPI we work together with other activists to figure out what would be best for them and for the international audiences also. So the aim is two-fold—to help them in their national advocacy, but also to show internationally the differences and the experiences with different drug policies, the problems with punitive drug policies and the benefits of helping people and respecting people's rights.

We don't over plan. We improvise quite a lot. We figure out what we want to film about, and then we discuss what kinds of questions should be posed. We don't really specify a lot. It depends on the situation. We often encounter situations that we were not expecting and things go in a completely different direction.

For example, in March 2010 we went to a conference in Vienna to film at a meeting of the Commission on Narcotic Drugs (CND). We were filming about certain issues, but they were not very exciting. Then all of a sudden, because we were registered as press, the Russian delegation invited us to participate in their press conference. We went into a small room with the head of the Russian anti-drugs agency, Viktor Ivanov, along with Antonio-Maria Costa, director of the UN Office on Drugs and Crime (UNODC) and a few journalists. We took this chance to pose inconvenient questions to Ivanov about the lack of methadone treatment in Russia, which is a very burning issue.

So all of a sudden we were focusing on these issues and not what we had been filming the day before. For example, Ivanov said that methadone treatment had been a failure in Baltic countries. So then we went out and interviewed experts from those countries who said that it was actually a success.

Ivanov had also said that methadone treatment was not prohibited in Russia, it was just not supported. This was completely different from previous positions the Russians had taken. We then got reactions from Costa and others. We also got a comment from Michel Sidibé, the head of UNAIDS, who said it's really a human rights violation to deny people needle exchange services and methadone. So we put all this together in the film and we're trying to use it as an advocacy tool ("Russia and Methadone: Breaking the Ice").

There have been many, many occasions where we've had to improvise.  It's also a matter of luck.

I wouldn't over-plan. The most important planning part for us is to find the right people. Once we've found them, the other stuff falls into place.

Do you have a few tips for people on how to make their videos effective?

The most important thing is to make it short and simple. Most people won't watch long films, besides some friends and family members. This is from the perspective of making free online videos that rely on people's willingness to watch them. I'm not talking about feature films made for festivals and for profit. That's a different situation.

We get a lot of comments showing that people outside harm reduction circles do watch the films and that it influences their perspectives.

Avoid jargon and stay away from elitist language.

Try to use humor. We do that a lot. For example, when we were filming at the CND, we recorded a sleeping delegate. While she was sleeping, speakers were droning on about the need to keep up the war on drugs. It can be entertaining while informing people.

Try not to be boring with too many dull talking heads. Use B rolls (additional sequences showing context) and cutaways. Try to make it dynamic, using music.

But the first and most important thing is the content. Once you have that, then you can try to make it more attractive.

It's important to find a personal story. The stories of the people you are talking about. It's an important slogan of INPUD (International Network of People Who Use Drugs): “Nothing about us, without us.” Reflect the personal stories of drug users if you're making a film on drug users, and so on. It's important, so that viewers don't just see advocates, lobbyists and experts, but people they can identify with.

For example, when I went to Georgia to help an NGO there with a film, we interviewed a father whose son was in prison thanks to that country's policy of random drug testing on the streets. The son was the only breadwinner, so the family, refugees from Abkhazia, were really suffering. This helped get across the negative impact of existing drug policies ("Looking for an Alternative").

How do you disseminate your videos?

Once the video is done we write a comment and upload them onto HCLU's YouTube channel and then embed them from YouTube onto the Drug Reporter website, and HCLU's other websites. We then distribute those page links via our colleagues and associates. We use Facebook a lot.

YouTube only takes films up to 10 minutes long. For anything longer than that, we use Vimeo. It offers good quality and videos can be longer but it has fewer viewers than YouTube.

We also try to get films into blogs and specific websites. For example many of our films are on the website www.stopthedrugwar.org. This is a very popular site with lots of viewers. They don't always pick up our videos though and its not always predictable which videos will get the most views and links.

How do you assess the impact of your videos?

The first way to see if they are being used, is the counts of views on YouTube. From that we know that our videos have been watched by several thousand people (some more than others), and people have also posted many comments.

Whether the videos have actually changed anything, is harder to know. But we do have some examples of situations where it seems our films have contributed to concrete change.

One of the most important of these came from a visit to an AIDS conference in Moscow. The situation in Russia is that they don't have methadone treatment, but there are harm reduction and AIDS prevention programs such as needle exchange programs (NSP). There are some 70 NSPs according to my knowledge. But the needle exchanges are funded by the Global Fund—there's no Russian government money.

The Global Fund held a review and decided that Russia was wealthy enough to deal with its own problems, so the Fund planned to pull out. The Russian government promised to keep the funding going, but later equivocated on funding harm reduction. At the Russian AIDS conference in October 2009 a lot of NGOs from the harm reduction field attended and asked the government whether it would be funding them. It became clear they would not be getting any support. The NGOs then turned to the Global Fund and asked it to extend its support for a further two years.

We filmed all of this, and put our film together two days after the conference ("Officially Neglected"). A petition was set up to collect signatures. We joined the NGO campaign to appeal to the Global Fund. The NGOs showed our film to many of those in decision-making positions, and these organizations have told us our video was a big help. The Global Fund granted the extension.

Another big example is a film of ours called "Silenced NGO Partner." This has been viewed about 90,000 to 100,000 times (57,000 on our own channel and the same amount on simultaneous uploads by others). Antonio-Maria Costa was in a discussion with NGOs at a UN drug gathering in Vienna, and we were there, filming. He said he needed outspoken NGO partners. Frederick Polak, a psychiatrist from Netherlands stood up and posed a question to Costa: how did he explain the fact that even though in the Netherlands one can buy cannabis legally over the age 18, levels of cannabis use are lower than or equal to, countries where cannabis use is prohibited. For example in the UK or the USA, cannabis usage is much higher than in the Netherlands. Costa shouted at Polak—and silenced him—at one point a security guard was hovering around, as if he was ready to throw Polak out. Costa just didn't answer the question.

We put the film of all of this up on our websites and asked people to email Costa and ask him the same question. He got so many letters ("Mr. Costa's Mailbox"), he made a trip to the Netherlands to visit a coffee shop and a safer injection site. Then he wrote a blog about it. His claims can still be disputed, but at least he had to address the issue.

Since then, we have followed Costa and Polak at other conferences. During his visit, Costa promised to publish a discussion paper on his visit but it never was published. We wanted to keep pushing the issue, and so we built a website, www.daretoact.net. On that site, you can see Polak speak out of the screen, directly addressing the viewer. He explains the issue and asks viewers to send letters to Costa and ask for the discussion paper. That site got tens of thousands of views a day. It is still eliciting four or five emails a week from people asking Costa about the discussion paper. At CND last year there was a further confrontation between Costa and Polak, and again, we made a film about it ("Polak vs. Costa").

Those videos show very clearly that there is no science behind current drug policy, and no real discussion—just political agendas that are driving present policies.

Generally, because of all our filming at the Commission on Narcotic Drugs, the CND has become much more visible—now many people know what it actually is. We also tried to amplify the NGO voice there, as there are many great advocates trying to affect the system—but they were not shown to the public before.

Our film in cooperation with the Swedish Drug Users Union looked at why there was no needle exchange in Stockholm, despite there being large numbers of drug users. Subsequently a decision was made to open a needle exchange in Stockholm. We can't say it's directly the result of our film, but we like to think it contributed.

Lastly, we constantly get positive and constructive feedback from harm reduction and drug policy reform advocates, that our films inspire others to make their own advocacy videos. We also got feedback that because of a film that advocated for methadone in Russia, more Russian people felt motivated to fight for this life saving medication.

A common complaint from NGOs wanting to start doing video advocacy is that they are too overworked and don't have the staff to take it on. What do you say to this?

If you are busy keeping important services running, for example, a needle exchange, then yes, you probably don't have the time and capacity to make advocacy videos. But if you are an advocacy organization, then advocacy is your main task, and film is a very powerful tool to help you achieve your program goals, so you should look at ways to enable you to do it.

Anything else you'd like to add?

Our films are all made for a purpose. We advocate for change and we need viewers and fellow activists to really use them, to share them and to act up for the issues we highlight in these films. The film itself is not enough, we have to create activity with it. It’s usually no more than sharing and sending an email, but as many examples have showed, it can really have an effect if enough people show their commitment to a cause.

To all of those who want to learn making videos: just start! With technology changing all the time, it's no longer that expensive. Decent equipment is becoming much more affordable. And it's not quality but content that really matters. Find ways to learn editing skills through friends, or if you speak English, there are very, very good online tutorials and forums. Sometimes you will experience technical difficulties but they can always be solved. You just have to be patient.

Finally, I'd like to thank our donors who made this all possible, Commonsense for Drug Policy and OSI.

For more information, see the HCLU Films Portfolio 2009.  It features stories, images, and links to streaming video and multimedia produced by HCLU in 2009.