Heyman nominations: Mofenson tries to break HIV link between mother, child

August 1, 2012

Lynne Mofenson’s office walls at the National Institutes of Health in Bethesda look like pages from a professional scrapbook, adorned with name tags from past international AIDS conferences, photos of her world travels and, if you look closely, a bit of medical history.

Lined up above photos of her garden are Newsweek covers from the 1980s with headlines highlighting the nation’s burgeoning fear of HIV and AIDS — “The Face of AIDS: One Year,” “Teens and AIDS,” “Sex and Age” and “Kids With AIDS.”

She saved them because they reminded her of her work as a pediatric intern at Boston Children’s Hospital. One of the first patients she took care of was an infant with HIV.

Mofenson, 62, chief of the Pediatric, Adolescent and Maternal AIDS Branch of the NIH, still feels a calling to take care of HIV-infected women and children. She works with researchers developing treatments, clinical trials and other prevention efforts aimed at preventing ­mother-to-child HIV transmission.

She also advises the World Health Organization, attending research sites and WHO meetings around the world to monitor search initiatives and recommend ways for limiting transmission of the virus.

For her work, she is a finalist for the Career Achievement Medal, one of nine 2012 Samuel J. Heyman Service to America Medals, the government equivalent of “Oscars” for outstanding federal employees. The nonprofit Partnership for Public Service, which administers the awards, will announce the winners in September.

“Research in children and research in pregnant women is a very ignored area in general, particularly when it comes to HIV,” she said. “You need to be the voice for those people.”

The early days

When she came to the NIH in 1989, the HIV transmission rate from mother to child was 25 to 35 percent.

In the early 1990s, she said, it was controversial to think about giving antiretroviral drugs to pregnant women.

A landmark research study she performed with her team in 1994 showed that transmission in the absence of any drugs was 25.5 percent in the United States, but the use of zidovudine (AZT) reduced the transmission rate to 8.3 percent. Today, with fewer than 100 infants born with HIV each year in the United States and mortality under 1 percent with the drug interventions developed, Mofenson said clear progress has been made.

“HIV was a terrible disease. It was killing women and children. And that was my goal, to figure out how to change that,” Mofenson said.

“We’ve developed intervention to prevent transmission from mother to child. . . . With developed drugs, we can treat these children who used to die before they were 1. . . . Now they’re becoming 20 and 30 years old. It’s quite an amazing change of paradigm to see in the course of a career.”

She didn’t always want to be a doctor. She thought the lifestyle was too stressful and the hours too long. She decided first to be a psychologist. But her father’s example proved too powerful.

Howard C. Mofenson was a pediatrician at Winthrop-
University Hospital in Mineola, N.Y. She remembers going on house calls with him when she was 6 and later making rounds while he worked at the hospital. One weekend, she came home from graduate school and, while on rounds with her father, held a baby with a fever while he was doing a spinal tap. As she watched him talk to the baby’s parents, she could see the difference he made in families’ lives, she said.

“I thought, ‘That’s what I want to do,’ ” Mofenson said.

She received her medical degree from the Albert Einstein College of Medicine at Yeshiva University in New York in 1977 as a pediatrician specializing in infectious diseases.

She worked at Boston Children’s Hospital and directed the communicable disease program as assistant commissioner for public health in Massachusetts before joining the staff at the NIH.

R.J. Simonds, vice president of program innovation and policy at the District-based Elizabeth Glaser Pediatric AIDS Foundation, said Mofenson’s passion for treating HIV-infected children and her scientific and policy skills make her “effective and influential.”

“Everyone in the field she works with gets her slides. She’s more open than anyone I know with sharing her hard work,” Simonds said.

Pushing for collaboration

Mofenson said that before HIV and AIDS, research used to be a secret preserve. Scientists and researchers wouldn’t share findings until they were published. When she came to the NIH, Mofenson said she found that institutions were not working together to match patients with clinical drug trials and to combine research efforts. She said that although she’s flattered about being nominated for the Career Achievement Medal, she also recognizes “the work of a remarkable group of smart, dedicated people who have worked together to make this research happen.”

“The biggest challenge has been bringing people together to collaborate and getting consensus and finding a way that everybody wins, so that rather than competing, we’re all gaining something and that people realize by working together you can make a larger difference than working separately,” she said.

Her focus now is on the UNICEF and WHO 2015 elimination plan, which aims to reduce the number of children newly infected with HIV by 90 percent, and to achieve a 50 percent reduction in the number of AIDS-related maternal deaths, in three years.

Once she’s finished with her work at the NIH in the near future, she hopes to spend more time with her husband, Bruce, and her daughter, Jessica, 30. She also wants to spend more time in her garden and work on her photography.

Until then, she’s hoping to train her successors. She doesn’t want the research she has helped foster to wither away after she leaves.

“If you’re the only person that does things, then when you leave, everything falls apart,” Mofenson said.

“It’s important to not just do things but teach people how to do them so when you’re long gone, there’s a legacy and the work is still ongoing. A large part of working in the federal government is to be able to get new leaders to follow you after you leave.”

Asked whether there’s a new medical mystery she’d like to take on, the veteran of the HIV wars demurred: “But this one isn’t solved yet.”

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