Advocating for Youth and Young Adults Born With HIV


By: Jennifer McMillen Smith, MSSA, LISW-S, Division of Infectious Disease and medically reviewed by Ann Avery, Infectious Disease Physician at Metrohealth Medical Center

Breakthroughs in modern medicine have led to advancements in HIV care delivery, especially for those born with HIV. With today's medications, it's become increasingly rare for an HIV-positive person to give birth to an HIV-positive baby in the United States.

Current practice indicates that HIV-positive pregnant people remain on antiretroviral therapy throughout pregnancy, labor, and delivery. They will also receive Intravenous (IV) AZT (an HIV medication) 4 hours prior to delivery. If the HIV viral load is below 1000, it is safe to have a vaginal delivery, but inducing labor is the best practice to ensure the ability to give IV AZT. If the HIV viral load is above 1000, a cesarian section is recommended. Babies are also given medication for 4-6 weeks after birth, depending on the pregnant person’s viral load. Ultimately this reduces the chance of a baby being HIV positive to less than one percent. Medical professionals specializing in perinatally-infected patients living with HIV often work with the same patients from birth to their teenage years and beyond. Kristina (Kristi) Langshaw, MSSA, LISW-S, a social worker at MetroHealth, works primarily with younger people with HIV. Most of her once-pediatric patients have grown into teenagers and young adults. She finds that teenagers have very different healthcare needs than young adults or pediatric patients.

One of Kristi's biggest takeaways? Above all else, family guidance and support do influence young people's medical care.

A challenging start

When beginning her work at MetroHealth, Kristi supported families with babies and toddlers born with HIV. Such work is incredibly challenging, as their parents often have a history of inconsistent medication adherence and might be managing various health and social challenges. Parents going through stressful and challenging times sometimes use avoidance as a way of coping with a traumatic situation.

Unfortunately, perinatally infected patients are very likely to imitate parental behavior, making it difficult for a medical professional to turn things around. These children often struggle with medication compliance. The Pediatric ID staff generally try to disclose HIV status to these patients around age 10. Staff can then have ongoing, age-appropriate conversations about HIV. Unfortunately, this is also when these youth come to realize the stigma and challenges that often follow.

Rebellion is a part of adolescence!

For those born with HIV, these challenges are often made worse by the loss of familial support. As they grow older, they may lose their parent to AIDS-related illness. They sometimes become distant from other family members and may be scared to ask for help. In turn, these teens often become isolated.

This situation means that young teenagers must grow up fast, but often struggle to do so. Throughout her career, Kristi’s found that 75% to 80% of her younger patients were not compliant with their meds. Almost all adolescents have at least some rebellious behavior, and teens living with HIV are no exception. One way to rebel is to refuse to take meds! These teenagers often feel invincible and believe that nothing will happen to them – at least not for a long time.

Nonetheless, HIV doesn’t work that way. Once their CD4 count becomes below 200 (usually from not taking meds) they become at risk for multiple opportunistic infections. If a patient does acquire one of these infections, the symptoms hit like a freight train, no matter the patient’s age. This often leads to multiple hospital admissions. Not to mention, there are undue effects of sickness and hospitalization on teens. The body can become frail, and it can take a long time for a teenager to recover. Adolescents with a history of not consistently taking meds often must take more meds in the future to stay healthy.

Teenager nature: What should you know?

It’s not a lost cause for youth living with HIV. However, healthcare professionals should remain mindful of some key details specific to this population:

  • Pill aversion: Teenagers often have pill aversion, meaning they have trouble swallowing medications in tablet or capsule form. This situation tends to be a mental barrier or a physiological response to stress, anxiety, and emotions.
  • Teenagers sometimes stretch the truth: It’s normal for teens to be dishonest, even when their intentions are good. Maybe they’ll outwardly state they take their meds daily. In practice, they might miss doses. Even when presented with evidence that their viral load is not undetectable, they will still swear that they are taking their meds. These youth often later state that they did not want to disappoint their medical team.
  • Family support is critical: Youth who receive much-needed support from their family are more likely to take their meds.

Tough love: Hand holding and harsh honesty

The bottom line is that teenagers need parenting. For medical professionals like Kristi, this responsibility often falls on them. She knows she's sometimes more tolerant of her patients' needs than some might say she should be. She lets them call her on the weekends, for example. These teenagers often have nobody else to offer support–not even family members.

Her tips and tricks:

  • Reminders: Texting appointment reminders can significantly help a busy teenager.
  • Being honest: Being honest: Not just with teens, but also with their parents or family members. In situations where family negatively affects the teenager's care, a medical professional can contact appropriate services to help remedy the situation.
  • Tough love: Be clear and direct. Teenagers need guidance and direction. An adult telling them to "get their stuff together" can help teens understand the importance of managing their health.
  • Showing somebody cares: Consistently demonstrating that someone wants them to succeed can be enough for teens to reevaluate their situation and take their meds regularly.
  • Positive reinforcement: Giving teens rewards if their viral load is undetectable (such as a gift card) can be a hugely positive force in their lives. Incentivization can teach them that regularly taking meds has significant, tangible benefits.

Plan clinic and support groups together

There usually aren’t support groups for youth living with HIV. Getting kids to their doctors’ appointments is already a struggle. As they mature into young adults and care for themselves, they can benefit from a support group.

MetroHealth runs an evening young adult clinic simultaneously with a young adult support group. Kristi has found that sending youth to a support group during clinic hours increases the likelihood of youth actually attending a support group and enhances their coping strategies related to their diagnosis. It also reinforces the importance of taking medication, allowing them to learn from someone that isn't their parent, doctor, or social worker.

Having a safe, confidential place among peers to discuss living with HIV can significantly benefit teenagers. For instance, one of the most pressing concerns for teens is disclosing their status to partners; most states require people with HIV to do this. Speaking with others who have been through this process, or are struggling with the same sorts of situations, can give them great advice and support on how to navigate this discussion.

Positive Peers

If you couldn’t already guess, teenagers tend to avoid pamphlets, brochures, and other forms of written literature. In current times, younger people are generally more receptive to information relayed through virtual or social media-based spaces. A great solution is to point teenagers to sites like our website, where they can read at their own pace from hundreds of articles that discuss living with HIV.

For HIV-positive people between the age of 13-34, or anyone with a patient, child, or family member in a similar situation, consider the Positive Peers app. This confidential tool provides access to a community of others living with HIV, providing each other with encouragement, comfort, and advice.

If you are part of a healthcare system, consider becoming a Key Health Partner.

Our community is 4.2x more likely to achieve sustained viral suppression.

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