OLD GREENWICH, CONN. — A small cohort of young people who were born infected with HIV is alive and well and struggling to come to grips with an adulthood no one ever thought they'd live to reach.
“We first saw some of these kids when they were 4 or 5 years old, and it is so heartening to see them now as young adults. We never expected them to live this long,” said Dr. Katlyne Lubin of the Albert Einstein College of Medicine's Rose F. Kennedy Center for Excellence in Developmental Disabilities, Bronx, N.Y. Since the early 1990s, the Kennedy Center has had a special program to help young children born with HIV, many of whom have significant HIV-related neurologic and developmental problems.
At a meeting of the Eastern Society for Pediatric Research, Dr. Lubin reported preliminary qualitative data gathered from the first-ever U.S. follow-up study of young adults born HIV positive. Her findings provide a window into the inspiring yet heartbreaking world of a unique generation.
“There was nobody like these kids before they were born, and because here in the United States we've been so successful in preventing maternal-fetal HIV transmission, there are hardly any others coming up behind them.” Many of the survivors of the original Albert Einstein cohort are doing surprisingly well given the daunting difficulties posed by a chronic and life-threatening disease and cognitive impairment, all against a backdrop of inner city poverty.
Today, these young people face entirely new challenges as they enter an adulthood for which neither they nor the health care system are prepared.
Dr. Lubin's study is a follow-up to work originally begun by P. Papola, M. Alvarez, and H. J. Cohen at Einstein in 1994. The team assessed the neurocognitive status of 90 children, ranging in age from 5 to 14, who were born infected with HIV. All were residents of the Bronx, and nearly all were from poor African American or Hispanic/Caribbean communities (Pediatrics 1994;94:914–8).
The original study showed that 44% of these young people were below average in intelligence for their ages, and 56% were at borderline intelligence. Half had significant language impairments, and 74% required special education services.
As the youths have aged, nearly all of them have ceased coming to the Kennedy center, and have been essentially lost to follow-up.
“We began to wonder what had happened to all of these kids, so about 2 years ago we decided to try and do a follow-up study, and track down as many of them as we could. If you know anything about doing research in inner city communities like we have in the Bronx, you'll know this was a Herculean task,” Dr. Lubin said at the meeting, cosponsored by the Children's Hospital of Philadelphia.
Her team was able to find leads to 44 of the original 90 young people, who now range in age from 16 to 24 years, with a mean age of 19. Twenty of these were confirmed deceased, but the researchers were able to make contact with 24 of the former patients, some of whom they'd not seen in over a decade. “We sent them letters and called them asking if they would come in and fill out follow-up questionnaires.”
Nine were living with adoptive families, and six were still living with a biologic parent, some of whom were HIV positive themselves. Three were living independently, and others were living with grandparents, siblings, or other relatives. Unfortunately, a significant number were in prison or detention centers.
The cognitive and neurologic problems present during their early childhoods have persisted to some degree into young adulthood. The mean total intelligence quotient in the group was 87, which is slightly lower than average (90–110). However, 17 of the young people were within the average range, and only 3 showed evidence of mild retardation. Fourteen still had language impairments, and 9 had learning disabilities.
Many of them were working very hard to overcome their disabilities. Nine of them were currently in school, four had already graduated from high school, two had obtained a general equivalency diploma, and two had actually graduated from college. “Given all the factors against them, these are major accomplishments,” said Dr. Lubin.
Dr. Lubin attributed their survival in part to improvements in antiretroviral therapy over the last decade. She noted that 14 of the 24 patients reported taking their anti-HIV drugs every day; 9 reported poor compliance. One patient reported taking the drugs on at least 5 of every 7 days. The investigators observed an age-related trend toward noncompliance; the patients who were over 21 tended to be less compliant than those under 21.