Larkin Callaghan

America’s Most Vulnerable Remain at Risk under the ACA

At 26 years old, I found myself in a predicament—my job didn’t offer health benefits, I definitely couldn’t afford a private plan, and I didn’t qualify for Medicaid. I was uninsured.

This is hardly breaking news. But as a public health professional, I had always been certain that I would never be one of those without healthcare coverage—at risk for potential financial and emotional disaster were illness to strike.

Knowing I didn’t have insurance, my mind turned every stomach pain I had into appendicitis. Every headache morphed into a potential brain tumor. Every time I tripped on the sidewalk, I said a brief prayer that I hadn’t twisted my ankle beyond self-healing repair. But I was fortunate: I’m a fit young woman. I was able to buy healthy food and exercise regularly, I had no chronic health issues, and I obsessively look both ways before crossing any street. With these due precautions, and with a little luck, that uninsured phase of my life passed without any real incident (other than a little anxiety and hypochondria).

Others haven’t been so lucky. Here’s a snapshot of some of the more disturbing statistics about the health of Americans: One in three Americans are obese, and over 25 million Americans have diabetes. It’s no wonder then that 27 million Americans have heart disease. And it doesn’t stop with physical health: over 25% of Americans have a diagnosable mental illness.

It’s clear healthcare coverage is important in America, and 50 million of us don’t have it.

In that regard, the passing of the Affordable Care Act was a relief for many who needed affordable insurance. Young adults are now covered on their parents’ plans until they’re 26. Medicaid was expanded to cover many more Americans than it used to cover. Perhaps most importantly, insurance companies can no longer exclude people for having pre-existing conditions that precluded them from getting the coverage they needed previously.

While all this is wonderful, it’s clear that the law falls short in some really important ways. A startling 30 million Americans will remain uninsured—still unable to get the coverage they need.

First, there are the unemployed who will miss out on the main mechanism through which many Americans will get coverage—their employers. There are also the workers at companies with less than 50 employees who are in trouble because their employers are neither required to provide coverage nor penalized for not doing so. Insurance is expensive, and beyond feasible for many Americans who need it. And several states are balking at the ACA-offered Medicaid expansion package for political reasons, leaving more than just a few Americans without coverage.

Luckily, for those whose incomes put them at 133% – 400% above the poverty line (about $11,000 in annual income for an individual and $22,000 for a family of four), there will be some help from the federal government with state health exchanges, which offer subsidies to buy insurance from a range of plans in their states.

But those earning less than 133% of the poverty line are in a pickle. Not only won’t they qualify for these exchanges, but they’ll make too much to qualify for Medicaid—with annual income caps in some states, like Texas, as low as $5,000 a year.

The implications extend beyond adults to children in low-income households, as well. A family health insurance plan that covers children costs $4,530 a year on average, even with employer-sponsored coverage. So those folks without employer-sponsored insurance have to pay even more to insure their children—a very real struggle for low-income families. This predicament leaves many kids without any healthcare net. What’s worse, CHIP (Children’s Health Insurance Program), a state-run program offering coverage for children in families that make too much for Medicaid but who cannot afford private plans, is facing major funding cuts, forcing more children to rely on that family coverage from their already struggling parents.

The ACA was certainly a big win for healthcare coverage in America, by no means the fearsome healthcare pariah its opponents are labeling it. But it’s not the paragon its proponents suggest it is, either. And for the 50 million Americans who it leaves in the dust, that means the same fear and anxiety I experienced when I didn’t have insurance—fear and anxiety that no one should endure.

Originally posted at The 2×2 Project. Note: I waffled on whether or not to post this given the current health policy climate, but for the sake of essential comparison, it’s worth revisiting how the ACA was originally received – and how dangerous it is to lose its protections.

How School-Based Health Centers Can Help Save Our Kids

Thanks to my elementary school nurse, I finished school on time. That’s right: In the 5^th grade, I strained during a school vision test to read the little letters I saw projected on a screen 10 feet away. Asking in bewilderment if I wanted to try again, the screener asked, “How have you even been seeing the chalkboard?” Off to the nurse I went to get my prescription recorded for her records, and glasses were ordered that day.

In the context of today’s school health services, my experience seems paradisal. That’s because today, public school health services are conspicuously absent. As a youngster, I never gave much thought to how the presence of that nurse or vision screener and her assessment impacted my uninterrupted performance in school. Given that we know academic success and wellbeing are inextricably linked, the low number of school-based health centers and staff is particularly troubling. Increasing the number of centers with fully staffed health professionals—nurses and school psychologists in particular—can greatly improve child health as well as academic performance.

The Affordable Care Act appropriated $200 million for the explicit purpose of building and expanding school health centers, a number that still seems low considering that only 45 percent of public schools have a full-time nurse, and 30 percent can only count on a nurse part time. A quarter of public schools have no nurse at all. A mere 12 states have met the Department of Health and Human Service’s desired ratio of one nurse for every 750 students.

The cost of a school nurse—the average salary hovers around $43,000 a year—and of equipping a center with supplies varies from state to state, and even county to county. If the ACA money were used solely on nurses, it would only allow 4,651 nurses to enter the field. After covering the staffing of public schools in New York City, Los Angeles, and Chicago we would be left with funding for a little over 1,000 full salaries—without even beginning to consider the cost of dedicating and maintaining a physical space in a school and procuring supplies.

Historically, school-based health centers have done everything from dispensing Band-Aids and cleaning cuts to providing immunizations, dispensing medications, and coming to the aid of children suffering from seizures. These centers have also offered preventive care and treatment for children who may not otherwise have access to health insurance. They can have a significant impact on what is known as the “achievement gap,” the major race and socioeconomic disparities in academic success that begin to emerge as early as elementary school, by working to address the health issues that have the greatest impact on a child’s performance in school.

An emerging body of research points to the ways in which these disparities could be drastically reduced, and preventive care restored, with the return of robust care being offered in house at our public schools.

The Journal of School Health devoted an entire issue to research by Charles Basch, Ph.D., of Teachers College, Columbia University, that highlights health issues with historically high socioeconomic, racial, and urban health disparities, how they contribute to poorer academic outcomes for minority youth, and how school-based health care can mitigate them. Children of color currently make up 85 percent of New York City’s public school system, one of the most racially segregated in the nation, and Basch’s research outlines seven health problems that can be easily addressed by a school nurse within these segregated environments and help reduce the disparities.

The least contentious health issues addressed are asthma, vision and nutrition. The prevalence of asthma among black children in the United States is 12.8 percent versus 8.8 percent for white children, and the annual estimate of asthma attacks among black children is 8.4 percent compared to 5.8 percent among white youth. Poorly controlled asthma can impact cognition and plays a significant role in absenteeism; the overuse of emergency departments and underuse of effective medications among minority youth are a good measure of how the affliction is having greater negative consequences for children of color.

As someone who needed glasses fairly young, it’s unsurprising that more than a fifth of youth have vision problems. A national sample of nearly 50,000 children showed those from low-income families were less likely to have vision diagnoses than high-income children. Once diagnosed, black children have less intensive and sparser care than whites. And everyone knows that breakfast is the most important meal of the day, but one study showed that among 9-year-old girls over a three-day period, 77 percent of white children had breakfast every day while only 57 percent of black children did. Of children qualifying for reduced or free lunch in their public schools, less than half participated in schools’ free breakfast programs for which they were eligible. Nutrition influences brain activity, which results in significant impacts on children’s learning and cognition.

There are uncomplicated solutions to these problems. Asthma screenings are quick, and medicines are immediately effective. Dealing with symptoms and management of asthma at school can decrease both absences and severe attacks. Vision screening is widespread in schools, but the coordination of follow-up care by a school health professional is essential for children in need of eye-care interventions and is the biggest culprit behind current disparities. Participation in universal school-breakfast programs has shown reductions in absences, and allowing children to eat breakfast in their classrooms as opposed to the cafeteria has resulted in increases in the programs. School-based health centers can oversee the distribution of healthy meals for children in need of these programs, with the added perk of highlighting which students may benefit from other school-health services.

Attention deficit and attention deficit hyperactivity disorders (ADD and ADHD) have received much attention in recent years. ADD/HD affects sensory perception, absenteeism, cognition, and even organizational and planning skills. Urban youth of color are more likely to be affected by and less likely to receive a correct diagnosis and effective medication. Screenings by school psychologists and learning specialists can aid in the diagnosis of ADD and ADHD and the accessing of medications, as well as help students with effective behavioral modifications. School nurses are in a position to manage the medications by dispensing them to students at school if necessary, and ensuring that the timing and dosage are accurate.

Most contentious of the issues tackled by Basch in his call to arms is teen pregnancy. Among 15- to 17-year old girls, the pregnancy rate among blacks is more than three times higher than whites, and the rate among Hispanic teens is more than four times as high. Teen mothers on average have two fewer years of schooling. They are 10-12 percent less likely to finish high school, and have 14-29 percent lower odds of attending college. The implementation of evidence-based, comprehensive sex education is the best way to reduce the teen pregnancy disparity. This requires the overhaul of the popular abstinence-only education programs, which have been shown to leave students ill-equipped to make the healthiest decisions. Given the fraught political environment, comprehensive sex education is not widespread, and school nurses can be an essential resource for students beginning to engage in sexual activity. From dispensing condoms to connecting students to community resources for treatment who may disclose concerns about both pregnancy and sexually transmitted infections, and being the person on campus who can answer questions privately about reproductive health, nurses can address issues that are not part of classroom learning.

There are signs of hope, as Basch was asked by Secretary of Education Arne Duncan to outline national health strategies in schools, but the now well-known public funding cuts to both healthcare and education continue to threaten the health status and educational attainment of youth in America’s public schools.

The disparities can be shocking. But these specific health issues are fairly straightforward, do not require specialists, and can be tackled easily within a school environment by nurses, resulting in the improvement of both kids’ public health and academic achievement—as long as they are given the finances and support to do so. As a front line of defense against immediate health emergencies and the prevention and maintenance of chronic diseases that develop in elementary school years, ensuring the presence of fully staffed, funded, and stable school-based health centers is essential—most especially for our children already victim to a shameful lack of resources.

Originally published at The 2×2 Project

The Declining Mental Health of Millennials: Is Depression the New Normal?

It is a familiar sight to see a group of teens bent over phones or gaming devices, checking in, tagging each other, posting pictures and commenting, and waiting impatiently for all their cyber friends to ‘like’ their work, or re-tweet their location, or post an accompanying video.

Teenagers today are some of the most enthusiastic users of social media sites like Facebook, and as an age group their Internet use is near universal—a full 95 percent of teens are now online.

This trend has provoked anxiety, raising a range of concerns, from sex predators to promoting a sedentary lifestyle. Less noticed has been the effects of heavy media use on mental health.

But just as teen internet use has risen in recent years, teen depression and psychopathology has risen five-fold since the early part of the 20^th century.

This relationship has recently been of concern to psychologists and psychiatric epidemiologists. Dr. Jean Twenge, a professor of psychology at San Diego State University, has been one of the most outspoken in her field on linking these two trends.

As she says in her recent book, The Narcissism Epidemic: Living in the Age of Entitlement, rising rates of depression are partly the result of a culture that promotes the narcissism pulsing through social media usage.

Americans—especially teenagers—now rely so much on external and immediate gratification, social status and image, and the superficial gain they get from social media that they are forgoing values that contribute to a sound internal life—like strong communities built more on shared goals than on individual success, and the pursuit of activities that provide internal satisfaction, Dr. Twenge says.

Eight percent of 12-17 year-olds in the United States experienced at least one major depressive disorder in the past year. While some have argued that this is simply the result of greater recognition and diagnosis of the illness than in the past, Dr. Twenge and others say it owes to the rise in materialism and narcissism in what she has termed “Generation Me.”

Teens who have grown up in today’s social media environment know no other reality than the one in which anyone in their ‘network’ has a lens into their life and the chance to judge every act of it. 80 percent of teens active online participate in social networking sites, according to a Pew Research Center study from 2011. For this reason, they get the message that “extrinsic” values like how people perceive—virtually or in reality—is of greater importance than “intrinsic” values like their personal goals and the development of a unique self.

Dr. Twenge has elaborated on this in her blog at Psychology Today, saying that culturally, we have lost rites of passage that demarcate adulthood, emphasize individual fame for fame’s sake as opposed to real accomplishment, over-indulge our children from early developmental stages, and support and even laud self-promotion at the expense of others.

Additionally, Dr. Twenge and colleagues have indicated in their research that this generation of teens and young adults are less civic-minded, care less about social and political issues, are less interested in working towards solutions to environmental concerns, and have less empathy or interest in social justice.

Dr. Twenge’s theory is backed up by parallel psychological research, which has suggested that feeling one’s fate is shaped by external forces rather than one’s own efforts—what is known as ‘locus of control’—is more likely to cause depression and anxiety than feeling an internal drive and control over one’s future.

“Externality,” a measure of one’s perception of the influence of external forces over one’s life versus the influence of internal motivation and action, can be used to determine to what extent someone takes responsibility for their own actions and how accurately one identifies how their own behavior leads to certain outcomes.

High externality also indicates little conviction in one’s ability to behave in a specific way, something known as self-efficacy.

This could mean that those who focus on more materialistic and superficial lavishing of attention are in part doing so because they lack the self-esteem and efficacy to think that they can achieve something more significant and tangible.

This is in line with Dr. Twenge’s hypotheses. She argues that narcissism and the rising but inaccurate levels of self-evaluation can ultimately lead to deeper disappointment in one’s self and depression from alienation caused by increased self-involvement.

There has been a marked increase since 1960 in the number of people who feel this way—that external elements control their lives and future, according to a 2004 epidemiological study that Dr. Twenge and her colleagues conducted.

These feelings are associated not only with depression but also ineffective stress management, feelings of helplessness, and decreased self-control. They are also associated with higher levels of cynicism and self-serving bias.

Two studies of Dr. Twenge’s are illustrative of the fact that this rise in teen depression is indeed both significant and new.

One is a recent meta-analysis she and other researchers conducted, which explored self-reported feelings of depression and sadness in college and high school students from the 1930s to the present.

Even though self-reporting is often questioned, studies have shown that self-reported feelings of depression and compromised mental health tend to be accurate in children and adolescents—perhaps even more so than in adults— and even complement diagnostic criterion for mental illness.

Five times as many teens and young adults now score above cutoffs meeting psychopathology criteria as they did in the earlier through mid 20^th century, according to Dr. Twenge’s analysis.

Population level results indicate the underlying shift has societal causes and is not merely the result of genetic predisposition to mental illness or an individual’s circumstances.

The second study took a closer look at teen depression in the past twenty years. Dr. Twenge noted that while major depressive disorder and suicide appear to have slightly receded since the early 1990s—likely a result of an increase in anti-depressant medications—current prevalence remains higher today than before the 1990s and psychosomatic complaints have continued to increase, such as feelings of being overwhelmed and anxious.

Other research has found a relationship between external motivators and neurological patterns.

One study revealed that teens suffering from depression had diminished responses to rewarding stimuli, such as genuine assurance of a job well done, a friendly affirmation from a friend, or small monetary compensations for the actual completion of tasks. Follow-up research showed that 20 year-olds who experienced depression as teens still have muted reward responses, indicating that help needs to be offered as early as possible.

Teen depression of course can have significant consequences, such as the increased likelihood of substance use and abuse, social withdrawal, strained relationships with family and friends, and in the worst cases, suicide.

To be sure, Twenge’s findings are controversial, and some continue to insist that there is no increase in depression or psychopathology in teens. But, in the opinion of Dr. Twenge, to prevent further increases in these depression statistics, teens need to move from constant self-promotion to feeling gratification from real achievement, and to reward feelings deriving from accomplishment as opposed to blindly seeking praise and compliment.

In today’s ubiquitous social media environment, that may be difficult to do, and the results slow to come.

Originally Published at The 2×2 Project November 7, 2012

The Top Five Myths About the Affordable Care Act

Originally published at The 2×2 Project, October 2012

It’s almost impossible not to be confused by the Affordable Care Act, even though it’s one of the most significant laws to be passed in the last fifty years.

If the content slicing and dicing wasn’t enough, there were the disingenuous characterizations of the law from its opponents, and the flagrant mistakes that some of our leading news organizations made in reporting the Supreme Court’s decision to uphold the law in June. A few misunderstandings that are particularly egregious keep arising in public health discussions about the ACA.

Let’s clear them up, shall we?

Myth #1: The ACA is a Sign of Impending Socialism

It’s true that the ACA is the biggest social welfare legislation since Medicare. It’s also true that socialized medicine has existed here for decades, with little opposition and even much support.

The crux of the socialist argument seems to hover around the issue of government control over an industry that would supposedly better function under a free market framework and limited restrictions. But it should be obvious that this is the framework we’ve operated under for decades, and that is has left millions without care. And true socialized medicine presumes that Americans are contributing to a government-administered healthcare delivery system. But that’s just not the case with the ACA.

Myth #2: The Government is Taxing You for Healthcare

Taxes have long been the poster child for government control. But the way this supposed “taxing” functions in the context of the ACA is tricky. Normally taxes are levied against all citizens, gleaned from earnings or tagged on to spending—like an income tax or sales tax you learned about in Econ 101.

While some justices used Congress’s taxing authority to render the law constitutional, the penalty fee—the “tax” in question—only applies to those who choose not to buy insurance, so outside of legal circles, calling it a “tax” seems a bit disingenuous to the true character if the penalty.

What’s more, whereas taxes are intended to pay for public goods that the government provides to everyone, the penalty under the individual mandate is intended to charge those individuals who don’t choose to buy insurance for the cost that society incurs as a result of their decisions—emergency room fees should they get hurt, for example.

Myth #3: It’s Going to Plunge Us Into More Debt and Cost Us Trillions

The claim that the entire bill will increase the deficit isn’t quite accurate. In fact, the Congressional Budget Office projects the ACA will save us money and cut the deficit by about a trillion dollars during its second decade of implementation.

In fact, as explained above, the ACA prevents average Americans from paying the healthcare costs of others: As is, those of us with insurance pay for care for the uninsured when they show up to the ER at our local hospitals requiring care—premiums go up, procedures are more costly, and physicians have to charge more. The ACA helps end that by requiring people buy insurance—or pay that penalty.

Myth #4: The Government is Eliminating My Choices

Opponents argue that under the ACA, the government will decide who lives and dies, and where Americans need to buy insurance. In fact, choice is built into the ACA with health insurance exchanges. These allow people to choose the providers and plans they want, something it turns out most people support and many states have begun to implement. By giving you the ability to select your physician, the ACA reallocates to you the power previously held by insurance companies to tell you which doctors you could see.

Additionally, with the expansion—and elimination in some cases— of spending limits, you’re no longer forced to choose what essential medical tests or care to pursue based on arbitrarily low spending limits imposed by insurers. Previously, these annual limits were in the tens of thousands. Now, the annual limit can be no less than $2 million, and lifetime limits are illegal for nearly all plans. This means you’re far less likely to run out of coverage if you develop a costly illness. It also means you don’t have to limit options if you and your physician choose additional forms of care or treatment that may improve your condition.

Myth #5: Obama is Raiding Medicare

In the last decade, payments from Medicare to private plans have increased dramatically—in fact, figures show that Medicare actually overpaid by 14-20 percent, and the costs of this overpayment fell on our seniors via increased premiums. Worse, there’s no evidence that these higher payouts to insurance companies improved care, probably because insurance companies—not seniors or providers—controlled allocation of that money.

The ACA has made Medicare more efficient by cutting some of that overpayment. This saves Medicare millions, but more importantly, improves care for beneficiaries in ways that a raid would not: Cuts will help close the prescription drug gap, reducing seniors’ costs. It also gives them preventive care free of any co-pays. Because of these changes, increases in payments to hospitals and providers is predicted to slow, hopefully slowing the growth of premiums and copayments that seniors have to pay. Most importantly, saving Medicare money ensures its longevity long into the future.

Returning to the Blogosphere

Hello readers! It’s been a while – three and a half years, it seems. In that span of time, I’ve moved on from my role at Stanford, worked for a couple years in HIV research management and capacity building at UCSF and in Kampala, Uganda, and then as an implementation director for a 13-country HIV surveillance project funded by the CDC. After a few years splitting time between SF, NYC, and East and Southern Africa, I’m back at UCSF at the AIDS Research Institute, where I’m directing strategic communications and partnerships for the HIV enterprise at UCSF and our affiliated institutions.

It’s been a good run – but I’m also working on documenting articles I’ve written across media sources in the last few years. Some I’e shared the beginnings of, and others I’ve yet to really promote. So in order to keep everything somewhat centralized, I’ll be publishing those pieces freshly on the blog over the next couple weeks. In order to prevent you all from being inundated by email updates, I’ll initially publish them privately and then make them public – so be sure to check back in the next few weeks. And more original content will be coming again soon. I hope you’ll all keep enjoying the reads, and as always, I welcome your feedback.

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.

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.

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.

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.

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%)
IDU^b	112	11 (9.8%)
IDU who share needles	11	5 (45.5%)
IDU who have a detectable viral load	11	6 (54.5%)

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.