A changing mission Caregivers meet new needs as young AIDS pati

Sunday, September 15, 2002

ST. LOUIS -- Eleven years ago, all Mildred Jamison wanted was to change diapers for babies with HIV. Now the St. Louis grandmother worries whether her teenagers will return in time for curfew.

Jamison established Faith House to care for the youngest AIDS victims, but March was the last time the Missouri Department of Family Services placed one such child in her care.

Scott Hummel can't even recall the last time he had a baby with HIV at Our Little Haven, another St. Louis home originally established to care for children with HIV and AIDS.

The number of infants born with HIV has decreased 80 percent in the United States, reports the July International AIDS Conference. Earlier detection in mothers coupled with anti-AIDS medications such as AZT have dropped the mother-to-child transmission rate from 25 percent to 2 percent.

"For all purposes transmission to the baby is nearly preventable," said Dr. Alan Knutsen, professor of allergy and immunology at St. Louis University.

Jamison, Hummel and others like them are seeing their missions changing with the epidemic itself. Infantile infection rates may have gone down, but infections in people 18 to 24 years old are rising and these victims are facing something unfamiliar to others -- life. What was once considered a death sentence has become more of a chronic disease, meaning this latest age group must not only treat the disease, they must learn how to deal with their new life.

Alienated from family

Jamison in turn, has to cope with hers.

"We're having a time with those teens," she said, walking into the house.

A registered nurse, Jamison said she noticed needs going unmet. She said often when a young person is diagnosed they are alienated from their family because of the stigma associated with the disease, especially if homosexuality is a factor. Other times they are already separated from their families and bounce from one friend's place to the next, which she called "couch surfing."

Dream House's first residents moved into the facility in May. Learning from Faith House, which Jamison financed on credit cards, she privately raised $1 million to open the eight-bedroom home. Five infected young people -- three female, one male and one transgender -- now live there.

A 21-year-old who called himself "Giovanni" moved into Dream House at the end of August and said he was surprised at its homeliness, expecting something like rehab. Besides private bedrooms with television, phone and bathroom, the facility has two billiards tables, a big-screen television, stereo, basketball court and chef.

He said the rules aren't too strict but others disagree. Besides a curfew contingent on behavior, which can be as early as 6:30 p.m. weeknights, residents must either get their GED or look for a job, waking up daily by 8:30 a.m.

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