How the Female Condom Can Help the Women of Chile

Huge strides have been made in the understanding of how behavior drives HIV-infection. Notably, much of the coverage of how social constructs (and contexts!) contribute to the epidemic revolves around prevention education in the scope of proper – male – condom use. No doubt, comprehensive interventions in this arena have been instrumental in curbing infections. But it’s worth noting the limitations of this approach given the changing face of the virus.

Chile, a country with a prevalence of 28,963 notified people living with HIV (and an estimation of about twice that actually living with the virus), like many countries, is seeing an increasingly feminized epidemic.

Unfortunately (and perhaps unsurprisingly), most prevention and education frameworks neglect to take into consideration why this is.

In many cases, and specifically in Chile’s, women are contracting the virus via their husbands in relationships presumed to be safe and monogamous, and in which the negotiation of condom use on the part of the woman immediately presumes she is adulterous.

More nuanced approaches to prevention need to be undertaken with the understanding of how relationship dynamics – and the social climate in terms of perceptions of HIV+ individuals – contribute to the spread of the virus.

The International Community of Women Living with HIV/AIDS Chile is doing just that.

ICW Chile primarily works with women who contracted HIV from their husbands, have been subsequently widowed due to the illness, and are now attempting to forge their own way. This is difficult in a place where the stigma of HIV weighs heavily enough for most women to expect job termination if they disclose their status. While treatment is readily accessible – the Ministry of Health provides ARTs for all those in need, an initiative not to be understated – the social ramifications prompt many women to remain silent.

An organization dedicated to education, awareness raising, commemorations, and training in areas of women’s sexual and reproductive health and empowerment (and, importantly, with a board made up entirely of HIV+ women), they are embarking on an undertaking addressing the need for women to be able to protect themselves – by providing them with female condoms.

Female condoms aren’t entirely absent in Chile – but they can hardly be considered accessible when only one organization in Santiago is selling them – at $6 a piece. Of importance to note, they are desired – one organization that represents 2,000 sex workers in Santiago has shared that of the approximately 70 women a week coming to them for contraceptives and protection, female condoms are consistently requested.

The reason? They are often able to negotiate male condoms with clients, but not with their partners or husbands, putting both parties at risk. Female condoms can be inserted before sex by the woman herself, which precludes a negotiation conversation that comes with the use of the male condom (and is often ultimately refused).

This is where ICW Chile comes in.

Female Condom

The ICW Chile has already forged some of the essential partnerships to get this initiative off the ground. Groups like Fundacion Margen (a sex workers’ rights and advocacy group), in addition to their own five sub-regional teams around the country are prepared to help with raising awareness for the campaign as well as actually distributing the female condoms. Two HIV/AIDS organizations and two transgender health groups are also supporting ICW Chile’s efforts, and the Santiago Chapter of the National Women’s Service (SERNAM) has also offered their assistance. Creating a robust community of like-minded organizations, with resources and ties to mobilize is no doubt important here – but without the product, these connections run the risk of withering.

Luckily, one gift that’s helping them get off the ground is from the Female Health Company, one of the two primary female condom manufacturers, which recently pledged to donate 1,000 female condoms to the campaign, an instrumental and desperately needed move.

But it’s not enough.

When you reflect on the numbers above, it’s clear that ICW Chile needs our help in procuring the goods – and we’re going to make it as easy as possible to assist!

The goal is to distribute 30,000-35,000 female condoms in the next six months, and reach out to 60,000 people educationally. Showing a dedicated interest to the Chilean government, by region, and indicating how many people would utilize the female condoms if they were accessible (financially as well as physically!), could help prompt a firmer commitment from the Ministry of Health to provide female condoms on the scale of male condoms.

They’ve set up an Indiegogo page that details what your gift can provide, what you’ll get in return, and some of the important facts we’ve highlighted here. (I’m donating in the name of my mom for Mother’s Day!) They’ve gotten some buzz already, and this is a bandwagon worth jumping on.

I urge you to check out their Twitter and Facebook pages as well, and share widely with your networks. We’ve all seen what social media networks and crowd-funded projects can achieve, and I can think of no better project right now needing our crucial support.

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Filed under Epidemiology and Population Health, Feminism, Health Behavior, Health Education, International, Public Health, Reproductive and Sexual Health, Women's Health

The Impact and Importance of AIDS Activism

A few weeks ago I was lucky enough to interview David France, a journalist and filmmaker who most recently wrote and directed the movie How to Survive a Plague, which has been nominated for Best Documentary at this year’s Academy Awards. The film details the work of the AIDS Coalition to Unleash Power (ACT UP), an activist organization that started in NYC’s Greenwich Village in 1987 in response to the rapidly growing and lethal AIDS epidemic among the gay population. Through political action like protests, public funeral ceremonies, and storming the buildings of the National Institutes of Health, ACT UP initiated ‘treatment activism,’ accelerating the development and distribution of AIDS treatment drugs and changing the pharmaceutical industry’s closed door research and development process to one that incorporated the insight and research of activists themselves. I wanted to learn more about what compelled him to create a film focused on this specific strain of activism, and how he saw the work of ACT UP being relevant to movements today.

My favorite of his responses was when I asked him if there were things that he wished had made it into the film but had to be cut because of the evolving narrative, and what those omissions were. I thought his answer was particularly moving:

“You know what? What broke my heart was leaving out people. People that did amazing things. Even in this very small line of inquiry that I brought to it, which is treatment activism. Other people were working on housing and prevention and pediatric issues, IV drug use issues. Even in just treatment activism I left out a huge number of players, many of whom died, whose lives in the last years were dedicated to this altruistic struggle to change the world of science and medicine. And they ultimately succeeded.”

The full transcript of the interview was published this morning over at The 2×2 Project, so head on over to read everything he had to say. Also check out Mr. France’s website, which has the archives of his incredible journalistic career, which he spent covering HIV and AIDS for years. And of course, I encourage everyone to see the film to witness just how far these grassroots activists got in advocating for and ensuring access to life-saving treatments and the disbursement of research that literally helped save millions of lives.

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Fostering Social Entrepreneurship in Rwanda

This post also appears on the Spark blog. It serves as a profile of one of Spark’s most recent grantees, an organization I happily support, The Komera Project.

It’s not every day that you get to see the foundations of graduate school flourish into a burgeoning non-profit organization halfway across the globe. So, when one of my close friends from graduate school told me in 2008 that she was starting an organization in Rwanda where she had been living, I was of course eager to support her. And the more I learned about Rwanda and the work her organization was undertaking, I became invested in seeing its success grow.

Named The Komera Project (in Rwanda the word “Komera” means “be strong, have courage”), Margaret Butler developed the idea to start the group over the course of her many runs through the Rwandan countryside. She noticed that sometimes girls from the local villages would jump in and join her on these runs until she realized that her behavior wasn’t going to be considered socially acceptable. Combined with the fact that Margaret was seeing first hand how most girls did not make it to secondary school, she decided to host a girls-only ‘fun run’ one day to promote the education and rights of these girls. As they started off, supporters shouted “Komera!” to the girls, and the group was born.

Image

Working with the local government, schools, and some on the ground staff from Partners in Health based in Rwanda, Margaret steered the first of Komera’s 10 girls onto their fully funded secondary education path. Komera has since grown to over 60 scholars, and has expanded their reach beyond just funding the girls’ schooling. They now also provide mentorship, a leadership program, and now a social entrepreneurship program.

Some context and understanding of Rwanda is essential to underscore how significant this is. Only 17% of girls in Rwanda go to upper secondary school (high school). 87% of the country lives in rural areas. All Komera scholars are from these rural areas and live on about $1 a day from families working as subsistence farmers or tin miners – so these girls would be farming, mining, and/or working in their households if not in school. Komera focuses on supporting the girls in grades 10-12, since the majority of girls begin dropping from school in grade 10. Komera never takes on a scholar unless they have the cash to fully fund them for those three years – this cost is $500 a year for tuition, uniforms, boarding, all school supplies, and personal supplies like hygiene products.

By 2010, the focus at the Komera Project had shifted from primarily scholarship to figuring out how to keep the girls in school and create a real Komera community, and that’s when the themes of mentorship and leadership came into play.

The transition into boarding at school can be really difficult for the girls, especially since they are spread between 13 different schools. In Rwanda, once you have the funds to pay, the local government decides what school you will go to, so while Komera would prefer all the girls to be in the same 4-5 schools, that isn’t possible. However, they are all in the same district (there are 30 districts in the country total).

To help combat some of the difficulties around these transitions, Komera provides school-based volunteer mentors for all the girls – female staff or teachers who meet one-on-one with the scholars every week. They actually use curriculum to cover topics like health education, financial literacy, what their rights are as women in Rwanda, to any personal concerns they may be having. The girls also meet with the Komera social worker (one of only two paid Komera staff members!) regularly when she visits each school throughout the year. Their next goal is to launch a university mentoring program, and they have started to do some outreach to universities in Kigali (the Rwandan capital) to see if there is interest among Rwandan university women to mentor these girls.

Leadership is another key component of the Komera Project. The Komera scholars attend Leadership Empowerment camp during their month-long summer break, where they take part in the now-annual Girls Fun Run and participate in workshops focused on topics like English-speaking skills, how to use computers, and sex education. These have been essential for the girls, because these month-long breaks can be vulnerable times for the girls who go back home. Most stay with extended family, get pulled back into working with the family and can potentially be convinced that they need to leave school – especially true for the nearly 20% of girls who come from families who don’t fully support their education efforts.

In regards to the new Social Entrepreneurship Program that Spark is helping to support, most recently the idea of sustainability has come up – how does Spark keep the momentum of being a Komera Scholar going once the girls graduate from secondary school? This was particularly pressing since 15 girls will be graduating in 2013.

The girls had been requesting a social entrepreneurship type training for some time – wanting to learn the skills necessary to starting and maintaining a business, a non-profit or grassroots venture. When asked about social entrepreneurship training, all the girls said that they had never even considered how they might be able to give back to their community or considered themselves leaders, and they were really excited about the idea of learning how to create something to benefit and incorporate their community.

The winter break, in November-December hasn’t been able to be filled by Komera because they haven’t been able to fund camps both in May-June when they have the leadership and empowerment camps as well as during the winter months. Finding funding for this new social entrepreneurship training became essential, as well as a way to get a tested and evaluated curriculum in their hands.

A local Rwandan group, Global Grassroots, has been offering entrepreneurship, business training, and skills-based workshops for women in Rwanda since immediately after the genocide – and they’ve been doing so pretty successfully. They have agreed to modify their program for a weeklong intensive program for teen girls, as well as moderate the weekly follow-ups. This will be called the “Girls Academy for Global Conscious Change.”

The girls will work in groups of ten, separated by interests – they’ll select a topic they want to focus on, like health, education, water, and they will learn how to craft a mission statement, develop a program goal and implementation plan, and how to write and follow a budget. They will be given small grants of $50, which will be managed by the social worker and through each phase can retrieve part of the money for supplies, then implementation or advertising. The goal is to have them create these mini-organizations and incubate them throughout the school year, with the hope of maintaining it beyond that year, turning it into a profitable business, and growing it beyond their immediate school community.

When I heard that this was their well thought out plan, I thought Spark would be the perfect place for Komera to seek funding help to cover the costs of the girls supplies, food, transportation, and personal supplies throughout the training. The perfect way to blend two of the organizations that are most dear to me.

The Komera Project embodies the exact kind of values and practices that Spark looks for in grantees, and I look forward to what these budding entrepreneurs are up to in just a few years.

Check out their Facebook and Twitter pages, and visit their site to learn more about Komera and meet some of their scholars.

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Retraumatization: The Increased Risk of HIV Transmission among Abuse and Assault Victims

While the transmission of HIV and the causes of HIV-related death are actually more complicated—and even more nuanced—than public discussion would let on, a few presumptions about it remain fairly accurate.

For women who are marginalized in their communities, who are victims of abuse or assault, and who are economically or socially dependent on a spouse, the risk of them contracting HIV or dying from multiple complications from AIDS is simply greater than that of women fortunate enough to not be subjected to these circumstances. Take these scenarios:

  • The power dynamic in an abusive relationship may prohibit women from being able to protect herself from a partner who refuses to wear a condom
  • Women in poverty and those who need to rely on a partner for financial support may have greater risk of comorbid infections than women of economic independence. They are less likely to have the health insurance and relationship with a healthcare provider that would support HIV testing and provide the essential—and expensive—HIV medications to ensure a healthy life and lower the risk of co-morbid infections
  • People without social support, living in fear of what an HIV-positive diagnosis means, or those who have reason to fear stigma around personal behavior when seeking treatment are less likely to know where to access treatment or seek it out because of that fear, stigma and lack of support

Common sense would seem to support these statements. But until recently, the pathways of infection were not always clear, and while the conclusions above seemed certainly reasonable, specific data to support them had been difficult to collect. Two recent studies led by a UCSF-researcher have changed that. One synthesized what is known about PTSD and exposure to trauma among HIV-positive women, and the other explored the root of this relationship.

The results were remarkable. HIV-positive women had between two and six times the rates of childhood and adult physical and sexual abuse, and PTSD. The snapshot of risk behaviors among HIV-positive women was sobering:

  Sample size Number (%) of participants with each characteristic
Sexual activity
Any sexual activity in the past 6 months 113 61 (54.0%)
 With a main partnerMedian number of main partners (if any) 61 43 (70.5%)1 (range 1–2)
 With casual partnersMedian number of casual partners (if any)a 61 23 (37.7%)1 (range 1–25)
Sex with any HIV negative or unknown serostatus partners (if sexually active) in the last 6 months 61 51 (83.6%)
 Disclosure of HIV status less than all of the time with these partners 51 29 (56.9%)
 Using condoms less than all of the time with these partners 51 31 (60.8%)
 Detectable viral load 51 30 (58.8%)
 Disclosure of HIV status less than all of the time, and using condoms less than all of the time, and a detectable viral load 51 16 (31.4%)
Substance use (any, recent)
Cigarettes 110 71 (64.5%)
Alcohol 111 50 (45.0%)
Marijuana 111 39 (35.1%)
Crack/cocaine, heroin, and/or methamphetamines 111 45 (40.5%)
IDUb 112 11 (9.8%)
 IDU who share needles 11 5 (45.5%)
 IDU who have a detectable viral load 11 6 (54.5%)

aOne participant had a very high number of sexual partners (N = 250) and was excluded from the analysis; b IDU injection drug use; ©2012 Machtinger, et al. (retrieved December 16, 2012.)

There were striking findings in terms of both HIV treatment failure and the impact of the above risk behavior in these women, bringing us the first real data hoping to explain this relationship. Those who suffered from recent trauma had more than four times the odds of anti-retroviral (ART) failure while on treatment than HIV-positive non-victims—and this was seemingly not due to self-reported poor adherence to the medication. One potential explanation offered by the study authors is that abuse and trauma interfere with an individual’s ability to stay on a consistent medication schedule, which is essential for control of the virus. Other studies have confirmed that abuse manifest as control, in which a male partner prevents his HIV-positive female partner from accessing services at a clinic out of fear that the stigma of HIV would be attached to him.

HIV-positive victims of recent trauma also all reported experiencing what the study calls “coerced sex,” and have over three times the odds of un-traumatized women of having sex with HIV-negative or status-unknown individuals. They had greater than four times the odds of inconsistent condom use, potentially exposing those casual partners to the virus. While high-risk sex behavior is always a factor in HIV-transmission, HIV-positive individuals who adhere consistently to HIV treatments are significantly less likely to infect HIV-negative partners during sex. So the lack of treatment adherence among traumatized HIV-positive women combined with the risky sex behavior is a great concern.

Interestingly, these figures were only significant among women who experienced recent trauma, indicating that the ongoing—not merely one occurrence—circumstances of abuse are the key to the relationship between HIV-infection and HIV-related illness and death. This can actually be seen as a snapshot of hope—if we are able to offer abuse, assault, and PTSD victims the appropriate support to heal from the experiences, we may be able to weaken the HIV/trauma relationship.

These studies draw a clear line between victims of assault and trauma and both the spread of HIV within their communities and the increased risk of HIV-related illness and death. But interestingly, the risk goes much deeper than these socioeconomic circumstances. The conversation around HIV transmission is generally split into one of two categories: social and behavioral—risky activity, injection drug use, the prejudicial judgment of sex workers; and medical and clinical—how the virus infiltrates the immune system, takes over cells, and how it is and isn’t suppressed with antiretroviral medications. What isn’t usually discussed is the possible combination of these two categories and how together they create a perfect storm for potential infection.

Recent studies have shown that those individuals suffering from PTSD had significantly higher rates of cytomegalovirus (CMV) in their body. A virus that is found in between 50%-80% of adults in the United States, CMV remains largely undetected—latent, suppressed, unproblematic—in healthy individuals. It’s also seen as a marker of immune health and function, and of the body’s ability to control potential infections. Given that 30% of American women with HIV/AIDS have PTSD (five times the national average), the potential relationship between their HIV-status and even further compromised immune function could lead to a myriad of comorbid infections and premature death. Other research has also shown that additional biological mechanisms may prevent ART-treatment from being as effective as possible, including high cortisol (stress hormone) levels. Not only do these victims have to fight against abuse and assault, they have been left without the essential social support to decrease risky behaviors that may expose others to the virus, and their own bodies are in revolt.

Collecting this kind of information is difficult. It requires consistent and positive communication between women and providers, unobstructed access to medical care and uninterrupted ART treatment, and of course, in this example, most importantly—removal from an abusive environment.

The combination of immunosuppression due to PTSD, the detectable rates of HIV in traumatized women whose viral loads are not suppressed by consistent anti-retroviral treatments, and the concurrent risk behaviors of abused HIV-positive women, all contribute to higher rates of HIV-infection in communities, as well as the potential for co-morbid infections and HIV-related death. Until these women are able to find the essential social and community support, free from abuse and trauma, and until their access to care and preventative measures are fully realized, the relationship between trauma and HIV will only deepen.

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Filed under Epidemiology and Population Health, Feminism, Health Behavior, Mental Health, Public Health, Rape and Sexual Assault, Reproductive and Sexual Health, Violence Against Women, Women's Health

The Staggering Incidence of Breast Cancer in the Bay Area

Check out this piece in Tuesday’s edition of my hometown paper, the San Francisco Chronicle, discussing research by the Public Health Institute on the bizarrely high incidence of breast cancer in Bay Area counties. It’s fascinating. Marin County has for years been considered a hotbed for this disease, without much explanation as to why, but now it seems that multiple Bay Area counties – with the exception of San Francisco County itself – are showing similar rates. No research was undertaken in this project to determine why, but getting a handle on which regions have the highest incidence rates is a good first step for further exploration.

This image shows the counties and regions in which invasive breast cancer is 10%-20% higher than in other parts of the state – two other regions were seen with similar incidence rates in Southern California:

Picture copyright of San Francisco Chronicle

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Filed under Epidemiology and Population Health, Public Health, Women's Health

Juvenile Detention Centers Miss Key Health Indicators for Girls

I listened to a great NPR report this afternoon by Jenny Gold about juvenile detention centers and how they’re missing some key indicators of the health status of girls that enter into the system. As someone specializing in adolescent girls’ health, I was pretty fascinated – it detailed the personal experiences of a few girls being seen in a New Mexico facility and also tried to address ways it could be rectified. Detention centers can actually be helpful entry points for girls and young women to be connected to healthcare resources (we’re talking mental and physical health, so everything from counseling to substance abuse help to medical attention if they are victims of assault or violence or have seen physicians only irregularly).

One of the biggest issues facing these girls was confidential disclosure of their health status and any social, emotional, and physical issues they were facing. Developing rapport with a provider at a detention facility can be difficult in and of itself, but the girls reported having to answer personal questions in an open-door location, often with men and boys – staff or other teens – present; unsurprisingly, this made it difficult for many girls to feel that they could answer questions of a personal nature (sexual behavior, drug and alcohol use, history of assault, abuse or violence) honestly and openly. What we do know about these girls – 41% have vaginal injury consistent with sexual assault, 8% have positive skin tests for tuberculosis, and 30% need glasses but don’t have them – shows that getting all of this information early on is essential for appropriate and timely care.

One proposed solution to this – getting as much information as possible from these girls about their health status and the best ways to then help them, treat them, and connect them with resources – was to have them fill out a survey themselves. Currently, girls are asked 35 questions by an intake nurse when they arrive, that cover things like current medications, alcohol or drug use in the last 24 hours, and whether they have a history of self-destructive behavior. The proposed survey in the New Mexico facility is 132 questions, and according to one facility employee the time that would take is just not feasible given the traffic and business of the facility. Researchers and providers implemented a pilot study of the survey for 30 girls at the detention facility.

Of course, I can’t comment on the actual level of frantic activity in the specific facility at hand, but I can say that having a questionnaire that catches health issues which can be immediately and effectively addressed can prevent a host of issues from getting worse as time goes on without treatment – potential injuries from abuse or assault, needing STI screenings for victims of rape or girls who are sexually active without access to contraceptives or regular gynecological care, and of course mental health resources and immediate connection with social workers or therapists for those girls in need. Either having the girls fill out the survey via computer themselves or having a nurse help them would also be enormously helpful in the long run. This can also be a great way to track the care progress of these girls over the years, as many go in and out of detention centers. For girls who have experienced assault or abuse or multiple infections and injuries, this can be an easy way to follow-up with them without having to go through essentially baseline assessments of their well-being every time they enter a facility.

Some of the sobering stats about the girls from this particular New Mexico facility from this report: Of the 30 girls who participated in the piloting of implementing this survey, 12 needed immediate medical care, and 23 were coded as needing medical care within 24 hours, based on the survey’s questions. Intakes without this survey missed essential things, like burns on one girl’s torso and chest.

Check out the whole report here. I have no doubt that detention centers are in dire need of additional resources and likely way more staff than they have, for more than just this particular issue of adolescent girls’ health, but if the issue is there being one nurse for multiple intakes, having the girls fill out the survey on a computer themselves – when they’re more likely to be honest than in discussion with a nurse anyway, seems like the best solution to these kind of initial entry screenings. Especially since poor physical health is an indicator of recidivism, increasing the likelihood of girls ending up back in a facility.

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Filed under Child Development and Child Health, Health Behavior, Health Education, Mental Health, Women's Health

The Incredible Rise of Diabetes in the United States

NPR had a great post dissecting the rise of diabetes in America in the last twenty years. Check out the graphic representation of the increase, it looks pretty frightening visually:

1995:

Diabetes prevalence in 1995

2000:

Diabetes prevalence in 2000

2005:

Diabetes prevalence in 2005

And, finally, 2010:

Basically: Yikes. And Happy Thanksgiving!

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