The Littlest Index Case: How Pediatric Patients in San Francisco Helped Decode HIV/AIDS

By Nairi Strauch

In 1981, HIV/AIDS seemed to emerge from nowhere, forcing physicians to diagnose and treat a disease they knew very little about. In the New York City and San Francisco hotspots, cases were largely confined to gay communities, and transmission seemed strictly sexual. The discovery of a pediatric case broadened the understanding of the disease and opened the path for major advancements in fighting the disease.

Dr. Arthur Ammann, then the director of pediatric immunology at University of San Francisco Medical Center, identified a child with an immunologic profile similar to the profiles of infected gay men. This patient had received multiple blood transfusions, suggesting that the infection could be transmitted through shared blood.

“It was very controversial,” explains Ammann, “The blood bank people

were afraid that it would keep people from donating blood.” Indeed, Irwin Memorial Blood Bank of San Franci

sco downplayed the suspicion that blod could be a source of the infection and made no changes to their system.

Ammann, to solidify his hypothesis, investigated other blood recipients from his first patient’s donor. He identified a two and a h

alf year old girl born in San Francisco with a complicated medical history and who had been through multiple foster families.

After a year of searching, he located the patient’s pediatrician. The patient had been admitted to Children’s Hospital Oakland and was under the care of Dr. Ann Petru. Petru had diagnosed her with the worst chickenpox she had ever seen, pneumonia, and encephalitis—inflammation of the brain. Ammann determined that she had the characteristic severe immune system problems. “He didn’t explain what it was; it didn’t have a name then,” says Petru. “But he thought it was related to the epidemic seen in gay men in San Francisco.”

Ammann continued the hunt. He next found a case whose mother was a prostitute and intravenous drug user.  The daughter contracted HIV at birth. This case became recognized as the first recorded instance of mother-to-child transmission of HIV.

By 1985, the medical community had accepted that the virus could spread through blood transfusions.  Blood banks began to screen and restrict blood donations.[i] Hemophiliacs who had previously received blood transfusions and those who displayed “risky behaviors” were also excluded as donors. According to Petru, such behaviors included IV drug users and homosexuals.

Meanwhile, Petru and other pediatricians at Children’s Hospital Research Center Oakland (CHRCO) began a program to identify children who had transfusions before the blood restrictions. Their “Transfusion Look Back Program” reached out to families of children who had received transfusions at CHRCO between 1978 and 1985. They sent 3,000 letters, suggesting that these patients get tested for HIV. 300 families responded. 17 of these 300 patients were infected with the virus .

In addition, CHRCO identified 16 infected hemophiliacs and discovered a growing number of children who had been infected with HIV at birth.  In response to these increasing numbers, Petru started the Pediatric HIV/AIDS program at CHRO, which she patterned after a clinic at the University of Medical and Dental School in New Jersey.  “I went there, and I said, ‘Show me everything you have. Tell me how you take care of these kids because I have no idea what to do for them.’”

Ammann, determined to improve care for pediatric cases, left UCSF to work at Genentech, a research-based biotechnology corporation founded in 1976. “I was frustrated that things were just moving too slowly on the pediatric side,” says Ammann, “The children were being left out.”  He also began work at the Pediatric AIDS Foundation whose efforts brought pediatric HIV to the attention of the National Institute of Health. The resulting collaborative studies and case comparisons across the country helped identify the best drug treatments to fight HIV/AIDS and address mother-to-child transmission.

Specifically, in 1994 the drug azidothymidine (AZT) became available.1

Without treatment, approximately 25% of all babies born to infected mothers would be infected at birth.  AZT, if taken during the last six weeks of pregnancy, intravenously during labor, and by mouth to the baby six weeks after birth, reduces infection from 25% to 8%.[ii] Efforts to prevent mother-to-child transmission represented the first clinical efforts towards preventing HIV.

Ammann, however, still noticed a problem. “What I saw lagging behind was the international epidemic,” said Ammann. “We were quite successful in stopping the transmission to babies in the US, fewer than 100 new cases. But the number of new infections per year in developing countries was somewhere between 500,000 to 700,000. So that’s why we started Global Strategies [for HIV Prevention in 1998].”

15 million children are HIV/AIDS orphans in Africa.[iii] According to Ammann, this number increases by 3 million annually; consequently, orphans have become an economic burden on African governments. The same money used for orphan aid could be used to prevent the problem at its origin: HIV. Organizations like Global Strategies work to reverse this trend by raising money to prevent the orphan epidemic through the aggressive treatment of HIV-infected mothers.

Today in the United States, Petru sees few new cases of pediatric HIV because of PMTCT. Petru’s clinic currently focuses on counseling and care to teenagers who contracted HIV at birth.

One of Petru’s patients is now sixteen and describes how the disease affects her young life. “HIV requires constant regulation,” she writes. “I have to go to the doctors every three months and along with those visits, I have to make time for blood shots. Now I just take 4 (pills) in the morning… The medication has some side effects to it, such as fat displacement, which means that my body does not look as normal as other girls which can be frustrating as a teenager.”

This teenager is one of millions of who copes with the challenges of pediatric HIV/AIDS. Nonetheless, with that struggle, she also holds the legacy of helping doctors make the critical link to blood transmission, helping to complete the clinical picture of HIV/AIDS.

 

Bios:

Dr. Arthur Ammann attended New Jersey Medical School and completed his residency at the University of California San Francisco Medical Center and fellowships in immunology at the University of Wisconsin Medical Center and University of Minnesota Medical Center. He is now the director of Global Strategies for HIV Prevention.

Dr. Ann Petru attended the University of California San Francisco Medical School and completed her residency and fellowship in infectious diseases at Children’s Hospital Oakland, where she is now the director of the infectious diseases department.

References:

[i] AIDS Timeline. Avert. http://www.avert.org/aids-timeline.htm.

[ii] Prevention of mother-to-child Transmission of HIV (PMTCT). Avert. http://www.avert.org/motherchild.htm.

[iii] AIDS Orphans. Avert. http://www.avert.org/aids-orphans.htm.