At Children's National Medical Center, Dr. Kathy Ferrer examines Simone, an adorable 3-year-old.
"Did you take your medicines this morning?" Ferrer asks Simone, who's with her mother. The child giggles and says yes. Simone's mother laughs as well, saying she had to bribe her daughter to take her medicines with a trip to the pool.
Ferrer treats children with HIV at Childrens, which is in Northwest D.C. In 2005, 6 percent of all babies in the United States born with HIV were from Washington, D.C. But there's been some progress; there hasn't been a baby born with HIV in the District since 2009 because of better screening and medical advances.
That's because if a mother who's HIV positive takes her medications regularly, there's a less than 1 percent chance of the virus being transmitted. But it isn't easy taking several pills every day, even as an adult. Simone's mother squirts the liquid medicines into her child's mouth twice a day using a syringe.
"Do you like your medicines?" Ferrer asks Simone. She giggles again, and says, "No, 'cause they're nasty!"
Simone doesn't know she has HIV. Doctors at Children's usually tell children when they are 12 years old. While HIV isn't curable, doctors emphasize children with the virus can lead long and productive lives on medication — if they take it. Simone does everything she can not to.
Simone's mother tried mixing the medicines in her favorite foods, but Simone has done everything from throwing it up and fighting her mother to throwing the syringe.
The challenges of HIV treatment
Children's cares for approximately 400 children and teens living with HIV — that's the majority of youth infected in the D.C. metro area. There are a lot of different medications available for them now, according to Dr. Lawrence D'Angelo, who works with HIV-infected adolescents at the hospital.
"But, unfortunately, we have a lot of young people will end up succumbing to this illness, if not during their teenage years, certainly during their adult years, unless we can get them to be adherent to medications," he says.
Getting patients to take their medicines is what doctors call HIV's 'Achilles heel'. Children often feel worse when they're on HIV medication because of the side effects, D'Angelo says, and there are no immediate consequences of skipping a dose.
"If you're a diabetic, and you don't take your insulin within 24 hours, you're gonna be sick," he says. "With this illness, if you don't take your medicine, you may get sick, but it can be five years from now, 15 years from now. It's hard for these kids to project into the future."
Ferrer sees the effects of children not taking their medication. They may not grow as tall, they may have trouble processing information or developing their fine motor skills. And they are far more susceptible to infections. But Ferrer hopes if she emphasizes it enough, as Simone grows up, it will become second nature to her.
HIV medications need to be taken 95 percent of the time otherwise the virus can become resistant. "Once you have a resistant virus, and you're a sexually active teenager, guess what's being transmitted?" Ferrer says. "So it's a huge public health issue.
Educating D.C.'s at-risk teens about HIV
That worries Michael Kharfen as well. He heads the youth outreach program for the D.C. Department of Health. While mother-to-child transmission is getting less common, he says, most of the time HIV among children younger than 19 is spread through unprotected sex. Only a tiny proportion of children and teens in D.C. have HIV; about 0.1 percent, according to Kharfen. But it's still critical to make HIV education a priority with young people, Kharfen says, because of the high rates of sexually transmitted diseases.
"Chlamydia and gonorrhea ... is where our infection rates of all young people is over 6 percent," he says. "When we go out and do screenings at high schools, our average rates range from 9 to 14 percent."
While these STDs are curable, they speak to risky behaviors, says Kharfen.
"Right now their population group doesn't have a lot of HIV in it," says Kharfen. "But as they grow older, if they have sexual activity with older people, where there is much more HIV present, then their risk of getting HIV infection, if their behavior doesn't change, is serious."
Living a life with HIV
At Children's, a multidisciplinary team covers every aspect of care. Because HIV is more common in poor areas of the city, low-income families often have more obstacles to successful treatment, says Angela Wilbon, a social worker who works with many low-income families.
"Sometimes we'll have situations where families have challenges paying the electricity bill and their medication needs to be refrigerated," she says. "If you have any kind of rodent infestation, that could impact their immune system. Transportation is a problem."
Often even when teens know they have HIV, they don't come in for treatment. Sometimes they're in denial, says Keith Selden, who works with at-risk teens in the District. Sometimes they don't want to take responsibility, and sometimes they just don't want to be different from their friends, he adds
"The only time they really think about being HIV-positive is when they come to the doctor, so for a young person who doesn't want to deal with it, guess what? They just won't come to the clinic," says Selden.
And the stigma attached to the illness is a huge barrier. Every healthcare professional at Children's can list stories of children being rejected for being HIV positive — stories that includes a child whose sister refuses to hug her and a teen who gets beaten up every day at school by former friends.
This is a heavy burden to bear, says Donna Marschall, a psychologist at the hospital. Dealing with HIV is difficult enough for adults; children with HIV are at higher risk of depression, she says.
"They don't have the years and years under their belt of, 'how do you cope with major life changing news,'" she says. "They haven't been on the planet as long. They're left to deal with something very big, they don't have the same level of coping skills developed."
Coping with the stigma of HIV
One patient at Children's, 18-year-old Cheryl had a grandmother — and a boyfriend — who loved her in spite of her diagnosis. But her best friend from middle school did not.
"She didn't say anything; she just stayed away from me," says Cheryl. "I asked her, 'why are you acting shady towards me?' And she told me it was because I have HIV."
Cheryl has seen her share of heartbreak because of her diagnosis, but says over the years she's learned to focus on her blessings and her future. She has just graduated from high school and is working this summer to save up for community college.
"I'm not going to think HIV's going to kill me off early," she says. "I'm going to keep going until it does."
She'd like to tell other teens with HIV that it does eventually get better. She would also like to tell them to be patient, and that it is possible to be happy.
It's often an uphill climb for the healthcare team at Children's National Medical Center as they try to get young patients to believe that HIV is not a death sentence, rather, it's a chronic condition that can be managed. Many children, including Cheryl, eventurally realize they can live happy lives, and that HIV does not define them, says Wilbon. And when that happens, she adds, "It's glorious."
So Wilbon and her colleagues continue to coax their patients to appointments, remind them to take their medications, and encourage them to follow their dreams.
This is the second part of WAMU 88.5's series on children with HIV in Washington, D.C. Some people's names have been changed to protect their privacy.
[Music: "Elegy" by Balmorhea from All is Wild, All is Silent]
Photos: Health Care Team Works To Keep Kids Healthy
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