HIV Grows Up
from Caring For Our Future, Spring 2005
By Kay Kinzie, RN, CFNP, and Myles Mendoza, MSW, CHIP Program
Children’s Hospital Immuno-de- ficiency Program (CHIP), began in 1992 with a mission to provide both comprehensive healthcare and access to research trials for HIV-infected patients.
The CHIP program provides family-centered supportive services to HIV-positive pregnant women and to children from birth through adolescence and their parents. In the 13 years that CHIP has been in operation, HIV/AIDS treatments and epidemiology have changed, and CHIP has grown with these developments. The CHIP program is one of 40 sites in the nation belonging to the AIDS clinical trials network. Many staff members of the CHIP program sit on the national committee, so the program is highly visible as well as nationally and internationally recognized. Fifty percent of the program is research, and 50 percent is dedicated to providing direct care to HIV-positive women and children. The CHIP program currently has funding for perinatal and pediatric research, and is in the process of applying for adolescent funding. CHIP participates in 17 national protocol research programs at this time, with eight additional trials specifically for CHIP clients.
A lot has changed since 1981, when the first cases of HIV/AIDS were observed in the United States . Between 850,000 and 950,000 people live with HIV/AIDS in the U.S. This number grows by an astonishing 40,000 new infections each year. Initially seen as a disease that affected only gay men, HIV is now recognized as a disease that affects people of each gender, age, race and sexual orientation. Heterosexual transmission now accounts for 40 percent or more of new cases. Youth ages 13 to 24 make up 50 percent of new HIV infections. Rising infection rates in women ages 18 to 34 are of particular concern because they are also the group most likely to become pregnant.
When More Than the Pregnancy Test is Positive
Without proper prenatal diagnosis and treatment, HIV-positive pregnant women carry a 25 percent risk of transmitting the disease to their infants. Fortunately, effective medical therapies are available to women identified as HIV-positive during pregnancy. The combination of HIV screening and new medications has reduced the incidence of mother-to-child HIV transmission to 1 percent to 2 percent or less. Prenatal screening for HIV is now considered standard of care for all expectant mothers.
A new HIV diagnosis made during pregnancy can be an incredible crisis for a woman and her family. The obvious concern for the unborn child is magnified by the stress of needing to test partners and other children. To address these concerns and to support the full spectrum of perinatal needs, CHIP offers a maternal care program for HIV-infected women. This program has been in place for the last five years and is unique to the Rocky Mountain region. Nurse practitioners in the CHIP program work in cooperation with the woman’s obstetrician throughout the pregnancy to provide medical management of her HIV along with regular OB care. Maternal HIV medication regimens are complicated, and women often need a lot of support to adhere to these strict protocols. The implementation of medication adherence plans is critical to CHIP’s success in preventing the transmission of HIV to infants. Intensive counseling and support are facilitated by small caseloads and flexible scheduling for women and their families.
In addition to perinatal medical management, CHIP has several programs to support parents through the birth and early development of their child. Many families who participate in the CHIP program have limited social support systems and resources. CHIP hosts birthing classes specifically designed to ready HIV-positive mothers for their unique experience. Classes provide participants with support and education to help normalize their childbirth experience and reduce anxiety so the woman feels empowered and hopeful as she prepares to deliver her child. CHIP also provides developmental learning “what to expect” classes for parents to increase parental success and confidence throughout early childhood. In addition to the above services, CHIP offers case management, early infancy care and infant HIV testing. These combined programs have produced excellent outcomes for participating women and children.
Growing Up Infected: Getting Help
Although prenatal HIV screening and treatment are widely available, some infants continue to be born with HIV. CHIP offers programs to treat these children as well as those who acquired HIV through other mechanisms, such as through blood products received prior to 1986, before HIV screening regulations were in place. Strict adherence to complex drug regimens and consistent follow-up with medical providers must be achieved to maintain good control of the disease. Children must comply with 95 percent of their treatment plans, or they will begin to develop resistance to the medications. Obtaining the financial resources necessary to support this type of care can be an ongoing challenge for families and providers. The CHIP program employs several knowledgeable medical social workers to help families successfully navigate complicated medical insurance benefit systems.
Most children in the CHIP program are now surviving beyond what experts would have expected 10 years ago. The advent of better medications and the advancing science in the approach to treatment have resulted in an improved prognosis for children who receive care at CHIP. The focus of HIV counseling and support has shifted from dealing with death to dealing with a long-term chronic illness.
This improvement in life expectancy, however, has brought other issues into sharp focus. HIV-positive children now face increasingly complicated social problems. Patients and their families have to deal with how and when to disclose medical information to their day-care facilities, schools and communities. HIV-infected children have additional reason to feel confused and stressed as they confront their emerging sexuality. They will need to consider future disclosure to partners in addition to the sometimes overwhelming responsibility for caring for their serious chronic (and potentially fatal) illness. While HIV treatment has come a long way, the stigma that HIV carries has not. Children who carry the HIV virus need to know that they are not alone. CHIP offers several social outings each year to allow HIV-positive children and families to gather and support each other. CHIP organizes trips to Water World in the summer, ski trips in the winter, and camps and other retreats for children and families throughout the year.
CHIP’s Future
As a combined result of effective treatments for children and the soaring rates of newly diagnosed teens, CHIP’s patient population is getting older. To address these new adolescent needs, the CHIP Youth Project (CYP) was established in 1997. CYP is the only comprehensive healthcare program in the Rocky Mountain region focused on serving HIV-infected and at-risk youth (13 to 24 years old). Teenagers recently diagnosed with HIV, as well as those who have lived with it for some time, carry specific challenges unique to their ages. CYP addresses these issues with a medical program developed with the adolescent developmental stages in mind. Peer counselors meet with patients when reporting positive HIV test results and then work with these teens to teach them how to avoid spreading the virus. Peer counselors also provide links to medical care. Youth clinics are designed so youth can meet as a group and support each other in their treatment. More experienced youth provide direction to their less-experienced peers. CYP clients also meet individually with physicians, nurse practitioners, social workers, a psychologist, a psychiatrist, peer counselors and a nutritionist. CYP offers both formal support groups and informal social events that offer young people a time to share experiences and support each other. Participants in the program also assist CHIP staff in hosting community outreach programs. These events use hip-hop music and pop culture to draw young people to a fun venue that provides confidential HIV testing and prevention information. Participants that receive CYP services become empowered healthcare consumers who are better able to manage their HIV into adulthood. CYP works to provide a smooth transition for youth into adult healthcare systems when they are ready.
Throughout pregnancy, childhood and adolescence, the goal of CHIP’s uniquely tailored programs is to support all of our clients through their sobering health condition and to set them on a track toward a long, healthy, high-quality life. It is an honor and privilege for all of our staff to work with our clients and to witness them live longer, healthier lives.
