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Cancer, Genetics, Research, Stanford News

Stanford partnering with Google [x] and Duke to better understand the human body

Stanford partnering with Google [x] and Duke to better understand the human body

Most biomedical research is focused on disease and specific treatments for illness, rather than on understanding what it means to be healthy. Now researchers at Stanford, in collaboration with Duke University and Google [x], are planning a comprehensive initiative to understand the molecular markers that are key to health and the changes in those biomarkers that may lead to disease. The was featured in a Wall Street Journal article today.

The study is at the very early stages, with researchers planning to enroll 175 healthy participants in a pilot trial later this year. The participants will undergo a physical exam and provide samples of blood, saliva and other body fluids that can be examined using new molecular testing tools, such as genome sequencing.  The pilot study will help the researchers design and conduct a much larger trial in the future.

“We continue as a global community to think about health primarily only after becoming ill,” Sanjiv Sam Gambhir, MD, PhD, professor and chair of radiology, told me. “To understand health and illness effectively, we have to have a better understanding of what ‘normal’ or ‘healthy’ really means at the biochemical level.”

“The study being planned will allow us to better understand the variation of many biomarkers in the normal population and what parameters are predictive of illness and may eventually change as a given individual transitions from a healthy to a diseased state. This will be a critical study that will likely help the field of health care for decades to come,” said Gambhir, who also directs the Canary Center at Stanford for Cancer Early Detection.

The researchers hope the work will provide insights on a variety of medical conditions, such as cancer and heart disease, and point to new methods for early detection of illness. Their studies will focus on the genetic basis of disease, as well as the complex interplay between genes and environment.

These kinds of studies haven’t been done before because of the cost and complexity of molecular measurement tools, the scientists say. However, the cost of some technologies, such as DNA sequencing, has been steadily declining, while some new tools and new ways of analyzing large quantities of data have just recently become available. So a first step in the study is to determine how best to use these technologies and determine what questions need to explored on a larger scale.

The work is sponsored by Google [x] and will be led by Andrew Conrad, PhD, a cell biologist and project manager at the company.

HIV/AIDS, In the News

Mourning the loss of AIDS researcher Joep Lange

Stanford researchers specializing in HIV/AIDS mourned the loss today of Dutch scientist Joep Lange, MD, PhD, a leading AIDS researcher who died in the Malaysian Airlines crash yesterday in Ukraine. Lange, a virologist, was particularly well-known for his work in helping expand access to antiretroviral therapy in developing countries. He was among dozens of people on the ill-fated flight who were heading to the 20th International AIDS Conference that opens Sunday in Melbourne, Australia.

“We are all in a state of shocked disbelief here in Melbourne at the tragic loss of one of the giants in the global fight against AIDS and HIV,” Andrew Zolopa, MD, professor of medicine at Stanford, told me in an e-mail from the conference site. “I have known Joep Lange for more than 25 years – he was a friend and a colleague.  Joep was one of the early leaders in our field to push for expanded treatment around the globe – and in particular treatment for Africa and Asia… The world has lost a major figure who did so much good in his quiet but determined manner.  I am shocked by this senseless act of violence. What a terrible tragedy.”

David Katzenstein, MD, also an HIV specialist at Stanford, learned of the death while in Zimbabwe, where he has a long-standing project on preventing transmission of HIV from mother to child. He said Lange, a friend and mentor, had been a “tireless advocate for better treatment for people living with HIV in resource-limited settings. He was universally respected and frequently honored as a real pioneer in early AIDS prevention and treatment.” In 2001, Lange founded the PharmAccess Foundation, a nonprofit organization based in Amsterdam, which aims to improve access to HIV therapy in developing countries. He continued to direct the group until his death.

Lange served as president of the International AIDS Society from 2002 to 2004 and had been a consultant to the World Health Organization, the federal Centers for Disease Control and Prevention and the National Institutes of Health. He led several important clinical trials in Europe, Asia and Africa and played a key role in many NIH-sponsored studies, said Katzenstein, a professor of medicine.

“He was a gentle, thoughtful and caring physician-scientist with a keen sense of humor and a quick and gentle wit. He was constantly absorbing, teaching and thinking about the human (and primate) condition and psychology,” Katzenstein told me. “He was much loved and will be sorely missed.”

Nutrition, Pediatrics, Public Health

Who’s hungry? You can’t tell by looking

child for hunger post2How can you tell if a child is hungry? Well, looks alone don’t tell the story.

That’s the message of a new photo exhibit on child hunger, which opened May 22 at San Francisco City Hall. The exhibit includes 20 photos of Bay Area children, who all appear to be healthy and well-fed. But half of them qualify as “food insecure,” meaning they and their families often go without enough to eat. In fact, one of four children in California lacks adequate food and may suffer the ache of hunger, what pediatrician Lucy Crain, MD, MPH, and her colleagues are calling a “silent epidemic.”

“I think people don’t want to focus on the prevalence of hunger and poverty. But we have to get it out in the open and acknowledge that it’s there. There shouldn’t be one child that goes to bed hungry for lack of food,” said Crain, who is an adjunct clinical professor of pediatrics at Stanford. Crain helped organize the exhibit, part of a larger campaign of the Child Health Advocacy Committee of the Northern California Chapter of the American Academy of Pediatrics to end childhood hunger.

The campaign was begun in response to the recent recession, when committee members all were reporting increased rates of hunger among their patients, said Lisa Chamberlain, MD, MPH, an assistant professor of pediatrics at Lucile Packard Children’s Hospital Stanford and founder of the advocacy group. Then in 2013, Congress threatened to eliminate the Supplemental Nutrition Assistance Program, which includes food stamps, on which millions of families depend. Congress did decrease the program benefits, with the result that more families and children are hungry and food banks are scrambling to keep up with demand, said Crain, who recently retired from her practice at Lucile Packard Children’s Hospital Stanford, where she treated children with disabilities.

child for hunger postAt one meeting, the pediatrician activists were struck by the fact that it is hard to tell which patients were hungry, noting, “You just can’t tell by looking – it’s all around us.” They decided to draw attention to the problem among legislators and the public at large and increase awareness among pediatricians and other health care professionals, who often fail to screen children for hunger issues. Children who lack adequate food, particularly those younger than age 3, may have developmental problems and are more likely to be in poor health as they grow up, studies show.

To illustrate the problem, the group enlisted the help of San Francisco documentary photographer Karen Ande, who has won awards for her work in photographing children in Africa (Karen happens to be a friend of mine who collaborated with me on a book on AIDS in Africa). She volunteered her time for the project, in which she shot photos of 20 children at a health fair and in neighborhoods in San Francisco. The project team screened the same children for hunger issues using the two most reliable questions from a survey developed by the U.S. Department of Agriculture. Half of the children were found to be food insecure.

“The real power of these photos is that you can’t tell by looking who screened positive for food insecurity and who did not,” said Crain, who is also a clinical professor emerita at UCSF.

The advocacy group is recommending to the American Academy of Pediatrics that its guidelines include screening for food insecurity as part of routine child health visits. If pediatricians know a family has inadequate food, they can refer parents to local resources, such as food banks and food pantries, or encourage them to apply for CalFresh, the state’s food stamp, supplemental nutrition program, Crain said.

As part of its campaign, the group also is preparing posters to be delivered to 2,000 Northern California pediatricians, as well as a BART display of the children’s photos. Collaborators in the project include the Food Security Task Force of the San Francisco Department of Public Health, the San Francisco Food Bank, WIC, CalFresh and the San Francisco Unified School District, all working to help achieve San Francisco Mayor Ed Lee’s goal of eliminating widespread hunger in the city by 2020.

Previously: Could a palm oil tax lower the death rate from cardiovascular disease in India?Lucile Packard joins forces with Ravenswood School District to feed families during the summer breakDoctors tackling child hunger during the summer and Annual federal statistics on children’s well-being released

Photos by Karen Ande

Global Health, Health Policy, Public Safety, Women's Health

Lobbying Congress on bill to stop violence against women

Lobbying Congress on bill to stop violence against women

capitol - smallWhen I walked into the U.S. Capitol building this week, it was with the weight of history – my own and my country’s. Years ago, I had walked these hallowed halls as a writer for a Congressional publication and had lived in a house just blocks away. But this time I was there for a very different purpose: I was going to try my hand at lobbying, plying Congress for a cause that had become dear to my heart.

I came to Washington, D.C. with nearly 150 volunteers and staff from the American Jewish World Service, an international development organization that promotes human rights and works to end poverty in the developing world. This year, one of the group’s legislative priorities is passage of the International Violence Against Women Act, now pending in Congress. In February, I had traveled to Uganda as a Global Justice Fellow with AJWS, learning first-hand why this bill is so crucial to the lives of women around the world. I met a gay woman whose life had become hell because of her gender identity; she’d been beaten, raped and robbed and was suffering the emotional trauma of being ostracized by family and community. I also met sex workers, many of them single mothers just trying to make a living, who had been subjected to unprovoked beatings and police brutality. And I met a transgender woman whose home had been burned to the ground and who had been terrorized by her community simply because of who she was. In fact, I would learn that one in three women around the world are beaten, abused or raped at some point in their lifetime – an appalling figure.

The bill would help combat this trend by using the full force of U.S. diplomacy, as well as existing U.S. foreign aid funding, to support legal, social, educational, economic and health initiatives to prevent violence, support victims and change attitudes about women and girls in society. When women become victims of violence, everyone suffers; gender-based violence can reduce a nation’s GDP by as much as 3 percent because women are so key to collective productivity.

“If you want to get a barometer on how a country will fare – its stability – just look at the way it treats its women,” Sen. Ben Cardin (D-Maryland) told our group as we prepared to head out to visit Members of Congress. “Women invest in children and family. Men invest in war.”

With the recent kidnapping of more than 250 Nigerian school girls, the need for the legislation has become all the more pressing. “This is the moment to strike,” Sen. Barbara Boxer (D-Calif.) said during a meeting with 20 members of our group. We met with Boxer in the sumptuous President’s Room in the U.S. Capitol, adorned with gilt, frescoes and historical portraits and the spot where Abraham Lincoln and Martin Luther King once stood. Boxer had just come from a vote on several new judges and was gracious enough to stop by to spend 20 minutes listening to our pitch and discussing strategy.

A strong women’s rights activist, she has been an ardent supporter of the bill from the start. With 300 nonprofit groups now clamoring for its passage, she said she felt it was time to introduce it into the Senate, which she did a week ago. It’s now critical, she said, to enlist additional Republican co-sponsors of the legislation, particularly among members of the Senate Foreign Relations Committee, to give it greater weight and bipartisan appeal. In the House, the bill already has 63 Democratic and 11 Republican co-sponsors, with more being sought.

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Global Health, HIV/AIDS, Research, Stanford News

Foreign aid for health extends life, saves children, Stanford study finds

Foreign aid for health extends life, saves children, Stanford study finds

Kenyan child pic - smallMany people are deeply skeptical of foreign aid, believing that these monies often wind up in the pockets of corrupt leaders or never make it down the chain of bureaucracy to the people who really need it. But a new Stanford analysis of both government and private aid programs shows that health aid has been extremely effective not only in extending the lives of people in developing countries but also saving the lives of children under age 5.

Lead researcher Eran Bendavid, MD, said foreign aid programs had their biggest impact between 2000 and 2010, when investments in health reached their peak. During that time, the U.S. government launched its hugely successful initiative, the President’s Emergency Plan for AIDS Relief (PEPFAR), while other private groups, such as the Gates Foundation, stepped up investments in health as well.

During that time, low-income countries receiving aid saw a dramatic decline – between 26 and 34 percent – in the number of children who died before their 5th birthday. With just a 4 percent increase in aid, or $1 billion, foreign aid could continue to have a major impact on child mortality, Bendavid said.

“If health aid continues to be as effective as it has been, we estimate there will be 364,800 fewer deaths in children under 5,” Bendavid said. “We are talking about $1 billion, which is a relatively small commitment for developed countries.”

He said many people may find the results surprising. “But for me, it fits with other evidence of the incredible success of public health promotion in developing countries,” he said. For instance, he did a study in 2012 which found that more than 740,000 lives were saved between 2004 and 2008 in nine countries as a result of the PEPFAR program. Other technologies, such as diphtheria, tetanus, measles and polio vaccines for children and insecticide-treated bed nets to prevent malaria, all have contributed to better health among adults and children in low-income countries.

He and colleague Jay Bhattacharya, MD, PhD, also found that aid programs had a lasting impact. The signs of aid’s impact on child mortality were measurable for three years after aid was distributed, while the link between aid and longer life expectancy was detectable five years after aid was made available, the researchers reported.

Previously: Stanford study: South Africa could save millions of lives through HIV prevention and PEPFAR has saved lives – and not just from HIV/AIDS, Stanford study finds
Photo by Karen Ande

Global Health, HIV/AIDS, Women's Health

Preventing domestic violence and HIV in Uganda

Preventing domestic violence and HIV in Uganda

Ugandan dancers - 560

The woman was terrified, as she had just come from the hospital, where she discovered she was HIV-positive. It wasn’t so much the virus she feared, as the reaction from her husband. If he were to find out, he would surely beat her and throw her out of the house.

As predicted, the husband arrived home and seeing his wife in distress, forced her to confess what she had learned. “Either I cut you in two pieces and throw you in the ditch or leave the house,” he yelled, his arm raised in threat.

Fortunately, the wife wasn’t harmed, for the drama was merely that – a work of street theatre designed to break the traditional patterns of domestic violence and HIV in Uganda. The drama is one of the creative strategies being used by the nonprofit Center for Domestic Violence Prevention in Kampala, Uganda to effectively reduce incidents of domestic violence by more than 50 percent in the communities it serves.

In the process, group also aims to reduce the incidence of HIV, which affects 7.2 percent of adults in the East African nation, according to the latest figures from the United Nations Joint Programme on HIV/AIDS.

The organization works by mobilizing local men and women and training them in various interventions, like the street drama, address pervasive problem of violence among intimate partners. According to its figures, 59 percent of women between the ages of 15 and 49 say they have experienced physical or sexual violence by a husband or partner at some point in their lives.

“We are talking about an epidemic,” said Tina Musuya, a social worker and a women’s rights activist who directs the organization.

I was fortunate to see the street theatre program in action during a recent trip to Uganda with the American Jewish World Service, an international development organization that works to end poverty and promote human rights in the developing world. Fifteen of us, all Global Justice Fellows with the organization, visited CEDOVIP’s offices in Kampala and then fanned out to see the group’s work in action in the streets of Kampala one sunny afternoon.

A crowd had already begun to materialize by the time we arrived in one of the city’s poor neighborhoods, where three drummers had lured people from their homes with a lively beat. Two female dancers in colorful red outfits (pictured above) then entertained the crowd, whose curiosity was heightened by the presence of us five white foreigners. By the time the drama began, more than 100 people had gathered in the dirt road – youngsters who tugged at our hands, older women who sat on wooden stools to watch and groups of men who stood on the sidelines, quietly assessing the unfolding drama.

The story begins when the woman returns from the hospital to cry on a neighbor’s shoulder. The husband then arrives and suspects something is up. He falls into a rage on learning the wife’s news, threatening to “break her bones” and ordering her to leave the house. But the wife says she has nowhere to go. Besides, she tells him, she acquired the virus from him.

A narrator, dressed in an orange shirt, periodically freezes the drama, soliciting suggestions from the crowd on what the couple should do. One observer tells the woman to call the police. Another urges bystanders to intervene to help save the situation.

“We have so many instances of violence in our neighborhood,” the narrator concludes, speaking in Luganda while our host translates. “See what happens in violent situations when the woman becomes HIV-positive. Be supportive. Support the victims, but also support the man. Change the behavior. Break the silence.”

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Global Health, Sexual Health, Women's Health

Sex work in Uganda: Risky business

Sex work in Uganda: Risky business

We step across a sewage channel to enter an unmarked, tin-roof building, leaving the bright sunlight for the dark corridors of a 23-room inn in a busy commercial district in Kampala, Uganda. More than a dozen women huddle on the mud floor in a small rectangular courtyard whose walls are charcoal-black. We gradually come to realize that we’ve arrived at a brothel, the destination for our field tour with the Women’s Organization Network for Human Rights Advocacy, a prominent group that fights for the rights of Uganda’s sex workers.

One woman in her 30s, dressed in a black head scarf, does much of the talking for the women at the brothel, speaking in her native Luganda while the manager of the inn translates. The woman says she lost her husband and had no source of income to support herself and her children. “I almost committed suicide,” she says, but a friend encouraged her to try sex work to earn money. “My friend said, ‘I will show you what to do.’” Behind her, three wooden doors lead to squalid, closet-sized rooms where the women live and work their trade.

The women, we learn, have turned to sex work as a matter of survival. Many have lost husbands or partners on whom they depended for income, and they lack the education or skills to find other jobs that pay a livable wage.

“If they turn away from sex work, how will they feed their children or pay their school fees?” one WONETHA official says.

But the work comes with a price. The women frequently face client abuse, beatings and harassment on the streets, even police brutality – including rape, beatings and extortion – and the ever-present risk of HIV.

“Sex workers are facing a health and human rights crisis in Uganda. Despite this, little is being done to protect the most basic human rights of sex workers,” declares a pink banner at WONETHA’s headquarters in central Kampala.

The largest organization of its kind in East Africa, the group works to provide the women with better access to medical care, legal and social services, job training and freedom from violence and arbitrary arrests.

I met with members of the nonprofit group in February as a Global Justice Fellow with American Jewish World Service, an international development organization that aims to end poverty and promote human rights in the developing world. I was among 15 fellows from the Bay Area who spent nine days in Uganda learning about the work of human rights organizations that advocate for women, girls and the LGBT community.

One of WONETHA’s goals is helping prevent HIV among the sex workers and obtain access to medical care for those who are infected with the virus. Sex workers are the greatest at-risk group in the country, with an infection rate of 37 percent in 2010, according to the Uganda AIDS Commission.  At the national level, Uganda was particularly hard-hit by AIDS early on, with the disease reaching epidemic proportions in the 1980s. Between 1992 and 2000, however, there was a dramatic decline in incidence – from an estimated high of about 18.5 percent to 5 percent. In recent years, the number of infections has begun to rise again in what many see as a disturbing trend; the infection rate reached 7.2 percent in 2012, according to the United Nations Joint Programme on HIV/AIDS.  Lax attitudes regarding safe sex and a lack of condom use are among the factors cited in the trend.

WONETHA distributes condoms to help protect sex workers against HIV and other sexually transmitted diseases. A dozen large boxes of Chinese-made condoms, supplied by the United Nations Population Fund, occupied a cool space in the group’s headquarters on the day of our visit – some 100,000 of them ready to be distributed to various locations around town.

But condom use, we are told, is not always guaranteed. Clients may resist using them or pay more for a condom-free encounter. A program manager with the group told me that even in marriages, many men resist use of condoms but continue to have multiple partners – putting their wives and the other partners at risk.

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Research, Stanford News

Researchers: Sea lions develop a form of epilepsy similar to that of humans

sea lionSea lions, those endearing creatures seen frolicking in San Francisco Bay area waters and beyond, are under threat from an unlikely source. The new foe is domoic acid, a neurotoxin that can cause memory loss, tremors, convulsions and death. The toxin is carried in algae that has been proliferating along the coast in recent years; sea lions ingest it by feeding on small, contaminated fish.

As a result of the exposure, the sea lions develop a form of epilepsy that is very similar to that in humans, according to a new Stanford-led study. The sea lions suffer brain damage in the hippocampus – the brain’s memory center – that mimics the damage in humans with temporal lobe epilepsy, said Paul Buckmaster, PhD, DVM, a Stanford veterinarian and expert in epilepsy in animals.

“We found there was a loss of neurons in specific patterns that closely matched what is found in people,” said Buckmaster, the study’s lead author. Moreover, the researchers noticed a pattern of rewiring in the brains of the animals that resembled that in humans with epilepsy, he said.

He said sea lions could serve as good models for studying the disease and developing much-needed treatments. Until now, scientists have been using rodent models for epilepsy, but rodent brains don’t exhibit the same kind of damage as that seen in sea lions and humans, he said.

The Marine Mammal Center in Sausalito rescues a few hundred sea lions every year that have washed ashore in the throes of seizure as a result of domoic acid poisoning. About half are effectively treated with anti-convulsive therapy, but the other half are beyond help and have to be euthanized, said Frances Gulland, PhD, DVM, senior scientist and co-author on the recent paper. Many more sea lions, as well as other sea animals, are believed to die in the open ocean of untreated seizures, she said.

The hope is that the new findings will help lead to interventions to prevent seizures in the animals and lead to better treatments for them, as well as their human counterparts, Buckmaster said.

“What we need is an interventional treatment – both in humans and sea lions,” he said. “You’d give the treatment right after the brain injury, and that would prevent them from developing epilepsy. That’s the dream, but we are not there yet.”

The new study appears in the Journal of Comparative Neurology.

Photo courtesy of Marine Mammal Center

Global Health, HIV/AIDS, Infectious Disease, Stanford News

Stanford study: South Africa could save millions of lives through HIV prevention

Stanford study: South Africa could save millions of lives through HIV prevention

South Africa could save the lives of some 4.5 million people over the next 20 years by using a double-barreled approach to HIV prevention.

That’s the result of a new study by Stanford researchers who looked at two methods for helping contain the epidemic in South Africa. According to the latest figures from the United Nations Joint Programme on HIV/AIDS, South Africa is the world’s hardest-hit country with 6.1 million people infected with HIV and most new infections happening via heterosexual transmission.

Effectively targeting people who don’t use condoms and have many sexual partners would prevent many infections and avert the costs of having to treat people down the road

One way to prevent sexual transmission of the disease is to give antiretroviral therapy to individuals as soon as they are found to be HIV-positive, said Sabina Alistar, PhD, first author of the new study. The World Health Organization now recommends that people go on ARV treatment when their CD4 counts – a measure of their immune system function – fall below 500. But a landmark study, published in 2011, showed that if infected individuals are effectively taking ARV treatment, the chance of their passing on the virus falls by a staggering 96 percent. So the greater the number of infected people on treatment, the less the virus will spread through the population.

“It’s much more cost-effective to put people in treatment as you find them, regardless of how far along they’ve progressed, rather than wait until they get really sick and put them on treatment,” said Alistar, who did the study while a PhD candidate in Management Science and Engineering at Stanford.

That idea isn’t new, but in this latest study from Stanford, the researchers examined the benefits of combining that universal approach to therapy with another tool, creating a powerful, cost-effective strategy for preventing millions of infections over time. The added tool, known as pre-exposure prophylaxis, or PrEP, involves daily use of a pill containing an antiretroviral drug. The pill is taken by people who may be at risk for HIV but are not infected. A landmark 2010 trial found that PrEP, if used faithfully, can reduce the risk of acquiring the virus by up to 73 percent.

“If you could focus on getting PrEP to people who engage in risky behaviors, then you could get quite significant results,” Alistar said. “Effectively targeting people who do not use condoms and have many sexual partners would prevent many infections and avert the costs of having to treat people down the road.”

She and her colleagues calculated that combining the two strategies – universal therapy for all those with HIV and targeted PrEP therapy for uninfected, high-risk individuals – would cost $150 per quality-adjusted life year gained (a QALY is measure of how much health benefit is gained for every dollar invested). That is a highly valuable bargain for South Africa, she said, which has significant resources to invest in the epidemic.

Eran Bendavid, MD, an assistant professor of medicine at Stanford and senior author of the paper, said scientists are now developing an approach to PrEP that only requires an injection every three or four months, rather than a daily pill.

When that therapy becomes available, “That has the potential to become a game-changer, since the Achilles heel of PrEP is low adherence,” Bendavid said.

The paper appears online today in the journal BMC Medicine.

Previously: U.S. AIDS Czar tells Stanford audience that witnessing death is a powerful motivatorTask force recommends HIV screening for all people aged 15 to 65International AIDS conference ends on an optimistic note and Using family planning counseling to reduce number of HIV-positive children in Africa

Global Health, Health Disparities

In Uganda, offering support for those born with indeterminate sex

Kaggwa - smallWhen most adolescent boys in his Ugandan village were lobbing soccer balls, Julius Kaggwa was sidelined by an unusual phenomenon: He began to develop the breasts of a girl. His mother took this as a sign from the spirits that young Julius was intended to be female and she began to send him to school in girls’ dresses. The boy was mortified and became afraid to show his face in public. Life became so unbearable that he contemplated suicide.

Today, Kaggwa, 44, is the founder and director of Support Initiative for People with Congenital Disorders, the first group of its kind in East Africa to serve the intersex population. Intersex individuals are those born with indeterminate sex because of hormonal, physiologic or other medical anomalies.

In Uganda, where children are cherished and celebrated by the community in the month after birth, he said the arrival of an intersex child is a mother’s “nightmare.”

“Our work starts in the delivery ward where children are mutilated or their lives are terminated,” he said. The mother may be reviled by the community: “There are people who will say, ‘What is the use of this woman?’ So the mother will kill that child to avoid the stigma.”

I met Kaggwa in February at the group’s headquarters in Kampala, Uganda’s bustling capital city. I had traveled to the East African country as a Global Justice Fellow with the American Jewish World Service, an international organization that aims to end poverty and support human rights in the developing world. Fifteen of us fellows spent nine days in Uganda last month meeting with organizations that support women, girls and members of the LGBTI community.

We headed down a long dirt road to the headquarters for SIPD, located in a building that remained unidentified for security reasons. Since the Ugandan Parliament passed a harsh anti-gay law in December, there had been a rise in arrests, beatings and public assaults on members of the LGBTI community, and there were concerns that the anti-gay sentiment would spill over into the organization.

The group focuses on changing cultural attitudes so that intersex children are more accepted in the community. SIPD also facilitates referrals to a hospital in Kampala where they can receive appropriate medical treatment, the only site in Uganda where physicians are equipped to deal with their specialized medical problems, Kaggwa said.

The group also does educational outreach in schools so that intersex youngsters don’t experience the kind of stigma and emotional trauma that he did.

“So they don’t have to kill themselves, drop out of school or sell their souls to seek asylum in other countries,” he said.

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