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Health Disparities, HIV/AIDS, In the News, Patient Care, Public Health, Women's Health

Photography and storytelling may help poor women with HIV cope with their illness

Photography and storytelling may help poor women with HIV cope with their illness

cameraI can’t tell you how many times I’ve heard a song, read a poem, or seen a photo that transformed my point of view. But the viewing or listening audience may not be the only ones who benefit from art: Sometimes the act of creating can be therapeutic for the artist, too. So I was interested to read about a study that looked at photography as a means to facilitate empowerment among women with HIV.

Scientists at the University of Missouri partnered with the charity PhotoVoice in a project called Picturing New Possibilities. Thirty women with HIV who were poor and members of a racial or ethnic minority group were given cameras to capture and document their daily lives. They discussed their images in small-group settings and had the option to display them in public exhibits. Then the women were interviewed about their experience with the project.

From a release:

“When the women got the cameras in their hands, they chose to focus on their strengths – not just their challenging circumstances,” [first author  Michelle Teti, DrPH] said. “They were able to reflect on what they had overcome in their lives despite illness. Many women said such opportunities for reflection were few amid their other life responsibilities. The photovoice project really enabled these women to stop, reflect and think about their HIV and their lives in new and often positive ways.”

The results of the study, which was funded in part by the National Institutes of Health, were published in the Journal of Nurses in AIDS Care (subscription required).

Holly MacCormick is a writing intern in the medical school’s Office of Communication & Public Affairs. She is a graduate student in ecology and evolutionary biology at University of California-Santa Cruz.

Previously: Dramatic art depicts triumph over HIVWHO’s new recommendations on contraceptive use and HIVEngagement in arts or sports linked with greater well-being, Scottish report shows and Research suggests art lovers may fare better after a stroke
Photo by Sasha D Butler

Events, Global Health, HIV/AIDS, Stanford News

U.S. AIDS Czar tells Stanford audience that witnessing death is a powerful motivator

U.S. AIDS Czar tells Stanford audience that witnessing death is a powerful motivator

In his early days as an AIDS specialist, U.S. Ambassador Eric Goosby, MD, watched as 500 of his patients died of a disease that he and his colleagues could do nothing to stop.

“None of us were prepared for the amount of death that confronted us,” he said of that time in the late 1980s and early 90s at San Francisco General Hospital. The clinicians also suffered at the overwhelming burden of loss, developing symptoms of PTSD and gathering for weekly sessions to talk about their departed patients and what they meant to them.

That experience essentially defined his work today as the top U.S. official for global AIDS programs, Goosby said in a talk last Thursday at Stanford School of Medicine. He told the audience:

It was the central motivator – the fact that I had been in front of so many people who didn’t get the benefit of antiretroviral therapy. I felt driven – and still do – because of those early losses to make sure people who would benefit from these drugs get in front of them.

Goosby today is director of the President’s Emergency Fund for AIDS Relief (PEPFAR), which celebrates its 10th anniversary of providing vitally needed assistance to developing countries affected by HIV/AIDS. He also serves as the U.S. liaison with the multi-national Global Fund to Fight AIDS, Tuberculosis and Malaria and most recently became director of the new Office of Global Health Diplomacy at the Department of State. He visited Stanford at the invitation of Michele Barry, MD, director of the university’s Center for Innovation in Global Health.

When PEPFAR began in 2003, there were only 50,000 people in sub-Saharan Africa, the region hardest hit by HIV/AIDS, who were on life-saving antiretroviral (ARV) therapy, which was first marketed in United States in 1997. In those days, there were two, three or four people sharing beds in African hospitals, where ailing people lined the hallways. Death was so prevalent that there was a shortage of wood to build coffins, he said. But death rates have declined significantly with the growing availability of precious medications. Now there are some 5.1 million people on ARV’s, in large part because of PEPFAR’s support, he said.

In addition to direct aid for therapy, a significant portion of PEPFAR’s funding – or $1.3 billion – goes to the Global Fund, and that “buys a lot of lives,” Goosby said.

Since the global economic downturn of 2008, the PEPFAR budget, like most U.S. government programs, has been strained, remaining flat after years of significant increases. Goosby said the program has been able to continue to provide treatment by switching from brand-name drugs to generics, which are less costly; streamlining distribution systems; reducing some staff; and using less costly transport methods, such as trains and trucks, to distribute supplies.

“This is a very important program, but it has had to get smarter about how it uses its money,” he said.

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Events, HIV/AIDS, Stanford News

U.S. AIDS czar coming to Stanford to discuss global health

U.S. AIDS czar coming to Stanford to discuss global health

Ambassador Eric Goosby, MD, the nation’s AIDS “czar” and an infectious disease specialist who treated HIV/AIDS patients in the early days of the epidemic, will visit Stanford School of Medicine next Thursday, May 30, for a conversation on global health.

Early in his career, Goosby treated AIDS patients at San Francisco General Hospital, back in the days when there were limited options for treatment (I remember crossing paths with him then, as I was a writer with University of California-San Francisco and based at the hospital).

Goosby has since gone on to major positions within the Clinton and now, the Obama, administrations. As the U.S. Global AIDS Coordinator, he directs the President’s Emergency Fund for AIDS Relief (PEPFAR), the nation’s premier international AIDS program begun in 2003 under the Bush administration. In recent years, he has come under fire from activists who believe the Obama administration has fallen back on its commitment to the program, whose budget has remained constant after years of substantial increases.

But at the International AIDS Conference in Vienna in 2008, former President Bill Clinton defended Goosby before an audience of thousands, saying he’s a good man with the best of intentions.

In addition to his work with PEPFAR, Goosby is the U.S. liaison with the Global Fund to Fight AIDS, Tuberculosis and Malaria, the international public/private partnership that provides antiretroviral medication to patients in developing countries. Goosby also leads the new Office of Global Health Diplomacy at the State Department.

I’ve heard Goosby speak on several occasions and found him to be an engaging and inspiring speaker with a deep understanding of global health needs.

The Stanford program will be held at 5:45 p.m. at the Li Ka Shing Center for Learning and Knowledge on the medical school campus. It’s free and open to the public, though registration is required.

Previously: Video: Kaiser Family Foundation town hall with U.S. Global AIDS Coordinator and New AIDS czar a good fit

Health Policy, HIV/AIDS, Public Health, Sexual Health

Task force recommends HIV screening for all people aged 15 to 65

Task force recommends HIV screening for all people aged 15 to 65

When we think of the AIDS epidemic, many of us turn to the developing world, overlooking the fact that HIV is very much a problem here in the United States. Every year some 50,000 people in this country are newly diagnosed with HIV, and many of these individuals previously had no idea they were infected with the virus.

To help prevent further spread of the disease, which affects an estimated 1.2 million Americans, the U.S. Preventive Services Task Force has issued (.pdf) a final recommendation that every adult between 15 and 65 be screened for the virus. Younger adolescents and older adults considered at risk also should be screened, as well as all pregnant women in labor whose HIV status is not known, the task force suggests.

“Treatment for HIV has advanced remarkably, helping people live longer and healthier lives, and reducing HIV transmission,” Stanford professor Douglas K. Owens, MD, one of the members of the task force, told me last week. “Treatment is most effective when offered early in the course of HIV disease, typically well before people have symptoms, and screening enables people to learn they have HIV in time to get the full benefit from treatment.”

“Screening  is especially important because up to quarter of people who have HIV do not know they have it,” Owens added.

Studies have shown that people who are infected with the virus are significantly less likely to pass it along if they are receiving ARV treatment, which reduces the amount of virus circulating in the blood. Moreover, people who are infected are more likely to do better – suffering fewer opportunistic infections – if they receive treatment early on, rather than wait until symptoms occur and the disease becomes more advanced. For these reasons, identifying infected individuals through universal screening makes good public health sense.

The task force’s latest recommendation, published in the new issue of the Annals of Internal Medicine, is in keeping with the guidelines of the American College of Physicians, the American Academy of Pediatrics and the federal Centers for Disease Control and Prevention. Owens talked more about this issue with me last fall, after the task force’s draft recommendations were released.

Previously: Stanford expert discusses recommendation for universal HIV screening, Task force issues draft recommendation for universal HIV screening and National HIV screening and testing could be very cost-effective

HIV/AIDS, Public Health, Stanford News

Stanford test a landmark in the blood-banking industry

As a reporter for a Palo Alto newspaper in the early 1980s, I interviewed Ed Engleman, MD, director of the Stanford Blood Center, about the blood center’s introduction of a novel HIV screening test, the first of its kind in the country.

Thirty years later, I revisited the test – and all the controversy surrounding it – as it would prove to be a landmark period in blood-banking history. What I discovered is detailed in a new story in the latest issue of Stanford Medicine magazine.

Fortunately I was able to plumb the memories of Engleman, who is still directing the blood center, as well as Herbert Perkins, MD, now 94, who directed the Irwin Memorial Blood Bank in San Francisco at the time. Because San Francisco was then an epicenter of the epidemic in the United States, Perkins was in the eye of the storm, trying to protect the blood supply while respecting the civil rights and privacy concerns of those in the gay community, where HIV was prevalent.

The debate about how to ensure the safety of blood supplies took place at a time when very little was known about HIV/AIDS. It was a true scientific mystery, with researchers speculating about the cause of this strange and deadly illness, which then had no name, and postulating about the potential for its spread through blood transfusion.

Another interesting perspective for the story came from Jeff Lifson, MD, now a leading AIDS researcher at the National Institutes of Health, who was a resident at Stanford working in Engleman’s lab during the crisis. He and Engleman both remembered the feeling of being ostracized by blood banking colleagues for introducing what they believed was – and what would later prove to be – a life-saving test.

Previously: New issue of Stanford Medicine magazine asks, What do we know about blood?

HIV/AIDS, Immunology, Mental Health, Public Health, Stanford News

New issue of Stanford Medicine magazine asks, What do we know about blood?

New issue of Stanford Medicine magazine asks, What do we know about blood?

“Blood is a very special juice.”

Goethe didn’t know the half of it when he penned this line for the character of Mephistopheles, in “Faust,” more than 200 years ago.

In those days people believed blood held mystical qualities and was a potent life force. No wonder Mephisto wants the contract for Faust’s soul signed in the stuff.

But what exactly does blood do?

The new issue of Stanford Medicine magazine tells blood’s story, from 17th-century attempts at blood transfusion to the workings of a modern blood bank to today’s studies of gene therapy to treat hemophilia.

Inside the issue:

  • “Blood quest:” An article on Stanford’s early fight to prevent the spread of AIDS by screening blood – while other blood banks argued against testing.
  • “Blood, sweat and fears:” The story of a blood phobic and his attempt to conquer the surprisingly common condition.
  • “Roll up your sleeve:” An explainer on the irreplaceable resource that is human blood, and why blood donation remains so crucial.
  • “Life of blood:” A visual primer on blood cells, the most numerous cells in your body.
  • “Against the flow:” A feature on why blood transfusions are declining, and why that’s good news for health.
  • “In his blood:” A look at growing up with hemophilia, featuring a physician with hemophilia who is dedicating his life to finding cures for the life-threatening disease.

This issue’s “Plus” section, featuring stories unrelated to the special report, includes:

  • “Bubble girl:” A feature on a new treatment for severe combined immunodeficiency disease, also known as “bubble boy disease.”
  • “A Nobel experience:” An insider’s view of this year’s Nobel Prize festivities.

Previously: The money crunch: Stanford Medicine magazine’s new special report and The data deluge: A report from Stanford Medicine magazine
Photo by Renphoto

HIV/AIDS, In the News, Infectious Disease, Stanford News

Stanford pediatric AIDS expert: Was the baby really cured?

Stanford pediatric AIDS expert: Was the baby really cured?

In the last few days, there has been much talk about the baby born with HIV who was reportedly cured of the disease – only the second documented case of an AIDS “cure.” Like a good scientist, Yvonne Maldonado, MD, a pediatric AIDS expert at Stanford, is a bit skeptical and says there are many questions yet to be answered.

“It brings a lot of promise and hope but there are lots of details to be looked at before the next step can move forward,” said Maldonado, chief of pediatric infectious disease at Stanford and Lucile Packard Children’s Hospital. She has been doing research on mother-to-child HIV transmission for many years, working with a group of women in Zimbabwe.

According to news reports, the Mississippi mother came to the hospital in labor, and tests showed she was HIV-positive. Because the mother had never been treated for HIV, doctors knew the chance was high that she would transmit the virus to her baby. So within 30 hours of the baby’s birth, they took the unusual step of treating the infant aggressively, with a full cocktail of antiretroviral drugs. The child continued treatment for 18 months, then stopped. And when the mother brought the two-year-old  back for a checkup, tests showed – remarkably – that the baby was virus-free.

One pressing question, Maldonado says, is whether the baby was truly infected. Babies can acquire HIV from their mothers in several ways – either in utero, during labor and delivery or as a result of breastfeeding.

Did this child become infected in utero with the virus, which was ultimately eliminated by the antiretrovirals? Or did the child simply carry some circulating virus from the mother in its blood – and the drugs stopped the virus from establishing itself in the baby?

“Those are two different things,” Maldonado told me. In the first case, “That would be a functional cure. The other would be preventing early post-partum infection,” a form of prevention, rather than cure.

She said there have been anecdotal reports of babies who have been able to clear the virus from their bodies. “You can find virus in infants that then disappears because they haven’t become infected,” she said.

If, on the other hand, this is truly a functional cure, then that has many implications for treatment of infants down the road. “If in fact that was the case, maybe that means instead of giving light therapy to prevent infection, all these babies (of HIV-positive mothers) should be getting heavy-duty therapy right from the start.”

Maldonado notes that pediatrics has routinely led the way in HIV prevention and treatment, as unlike adults, one can often identify when a baby became infected – and then quickly move to intervene. She said it’s unfortunate the latest case, reported at a scientific meeting, occurred during the weekend of the budget sequester.

“Our capacity to study this will be limited,” she said. “NIH will be flat-funded, and yet here’s an opportunity to look at these paradigm-shifting concepts. But these things need resources. It may be a serendipitous finding, but it will be just that if you don’t do more science-based inquiries.”

Previously: International AIDS Conference Day Three: Daring to talk about a cure and Experts discuss German patient who appears cured of HIV

HIV/AIDS, Men's Health, Public Health, Research, Technology

Using Facebook to prevent HIV among at-risk groups

New research suggests that social networking sites, such as Facebook, could be effective tools in increasing awareness about HIV and potentially reducing infection rates among at-risk groups.

For the study, UCLA researchers created Facebook groups on topics such as HIV general knowledge, stigma and prevention, and they offered the opportunity for users to request at-home HIV-testing kits. Next, they recruited 112 African-American and Latino men who have sex with men through community organizations, bars, gyms and schools, and through online ads on Craigslist, Facebook and MySpace. The study involved a 12-week intervention and one-year follow-up, and, as described in a Science Daily story:

Participants were randomly assigned on Facebook to either a general health group or a secret HIV-prevention group — one that could not be accessed or searched for by non-group members.

The researchers found that participants in the HIV-prevention group freely discussed HIV-related topics such as prevention, testing, knowledge, stigma and advocacy. Those over the age of 31 were more likely to discuss prevention, testing, stigma and advocacy topics, while younger members were more interested in HIV knowledge–related discussions.

In addition, participants who posted about prevention and testing had over 11 times the odds of requesting an HIV testing kit than participants who did not discuss those topics.

The work appears in the current issue of the journal Sexually Transmitted Diseases.

Previously: Can social media improve the mental health of disaster survivors?, Facebook may grant researchers access to study data, Recognizing mental health problems through Facebook and Facebook application aims to raise awareness, prevent cervical cancer
Photo by Elvert Barnes

HIV/AIDS, Image of the Week

Image of the Week: Glass sculpture of an HIV virus

Artist Luke Jerram has created a remarkable collection of glass sculptures depicting some of the most notorious microbes. This image illustrates the HIV virus and, as noted on Jerram’s website, was made as an object “to hold, to contemplate the impact of the disease upon humanity.”

One HIV-positive patient who viewed a photo of the sculpture at an exhibit in 2009 wrote to Jerram saying:

I just saw a photo of your glass sculpture of HIV. I can’t stop looking at it. Knowing that millions of those guys are in me, and will be a part of me for the rest of my life. Your sculpture, even as a photo, has made HIV much more real for me than any photo or illustration I’ve ever seen. It’s a very odd feeling seeing my enemy, and the eventual likely cause of my death, and finding it so beautiful. Thank you.

Jerram’s glass microbiology sculptures are currently on display at New York City’s Museum of Art and Design.

Previously: Engineering immune cells to resist HIV and Stanford expert discusses recommendation for universal HIV screening
Via Fast Company
Photo by Luke Jerram

Genetics, HIV/AIDS, Immunology, Research, Stanford News

Engineering immune cells to resist HIV

Engineering immune cells to resist HIV

People with HIV have to take a cocktail of drugs daily to keep the lethal virus in check. But a novel gene therapy approach, now under development at Stanford, could make patients resistant to the virus and free them from this lifelong dependence on drugs, which have adverse side-effects.

In a new study, the researchers describe their technique of using “genome editing” to make T cells, key cells of the immune system, resistant to the virus. In studies done in the lab, the technique effectively blocked the virus from entering the cells through one of two receptors, known as CCR5 and CXCR4. These are the two common entry points for the virus.

In one instance, the researchers used genetic manipulation to deactivate the CCR5 receptor gene. And for added protection, they were able to introduce three known anti-HIV genes into the receptor genes. This blocked both CCR5 and CXCR4. These modified T cells had more than 1,200-fold protection, and in some instances more than 1,700-fold protection, against HIV; unmodified cells succumbed to infection in a matter of weeks, the researchers reported.

The research is still in the early stages and has to go through animal testing, as well as clinical trials. But it is a very encouraging step forward in the field of gene therapy for HIV, Matt Porteus, MD, the lead investigator told me.

“I feel this is a significant improvement in the first generation application. So I’m very excited,” he said.

Interestingly, as I left Porteus’ lab, located in the Lorry I. Lokey Stem Cell Research Building, I ran into another HIV researcher and mentioned the work, which was entirely new to him. That’s how innovative this technique is.

Porteus, a pediatrician, is interested is using the approach to treat other diseases as well. A hematologist and cancer biologist, he treats children at Lucile Packard Children’s Hospital and is hoping some of his patients, such as those with sickle cell anemia, might someday benefit from a gene therapy approach along these lines.

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