Over the course of the past 16 years, as antiretroviral treatment has gotten much better, our focus has shifted from inpatient care to ambulatory care. We have been trying to identify people and link them to care so that they can start HIV treatment at the appropriate time. We provide people with the range of medical services that they need to stay healthy into their 60s, 70s and beyond. We are HIV specialists and general internists.
—Edward Telzak, MD, Chief of Infectious Diseases,
AIDS Program Director, Bronx-Lebanon Hospital Center
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was signed into law in 1990. Since then, Ryan White funding has built—and expanded—the capacity to provide multidisciplinary HIV care and treatment in the context of supportive services to those who need it most: poor and underserved people. In 2010, Ryan White entered its second decade, serving more than 500,000 people living with HIV/AIDS (PLWHA), 88 percent of whom were uninsured, and 73 percent of whom were racial and ethnic minorities.1 As Dianne Weyer, a family nurse practitioner who has been caring for PLWHA since 1986, explains, “When I started, life expectancy [for HIV patients] was 18 months. One of my patients is now 60 years old. I asked him if he thought he’d live to be 60 when he was first diagnosed at 39; he said ‘no way.’”
Now that therapeutic advances have transformed HIV from a fatal infection into a chronic, manageable condition, more and more people are living with—rather than dying from—HIV/AIDS. Ryan White grantees and providers continue to meet the challenges of a dynamic epidemic by expanding management of an infectious disease into providing comprehensive primary care and wraparound services. Ryan White grantees and providers have “been able to modify the care delivery system” says Dianne Weyer. “Our infrastructure provides a great way to assess the individual; we do physicals and take a family history. We never used to do these things; they were not a staple of infectious disease management. Good primary care is really important, and Ryan White is a great place to deliver it.”
“The current model of care has evolved from the early days of the epidemic,” says Dr. Edward Telzak, who has been at the forefront of the epidemic since it began. “In the Bronx—an HIV epicenter—we quickly realized the importance of providing a range of services, such as psychiatric and mental health care, nutrition, adherence, and legal programs. Now that we can take care of people’s HIV, and they are living longer, patients have the opportunity to get all the other diseases that the rest of the population is at risk for, such as colon, breast, or lung cancer, diabetes, and cardiovascular disease. We need to be complete physicians, not just HIV specialists. Ryan White funding has helped us achieve this transition and has allowed our medical sites to be medical homes for our patients.”
Growing up with Ryan White
“Before ART [antiretroviral therapy], we spent more time at deathbeds and funerals than giving good news; we had more than 50 kids every year, and 30 of them died each year,” explains Ana Garcia, assistant professor of clinical pediatrics and the Ryan White Part D pediatric coordinator at the University of Miami Miller School of Medicine, Pediatric Infectious Disease & Immunology. The rate of perinatal transmission—when HIV is passed from mother to child during pregnancy, labor, delivery, or breast feeding—has dropped dramatically since 1994, when researchers reported that administering zidovudine (AZT) to HIV-positive mothers and their infants significantly reduced mother to child transmission (MTCT). “Research and training saved lives,” says Ira Schwartz, director of the Ryan White Southeast AIDS Education and Training Center housed at Emory University School of Medicine. “The perinatal epidemic was reduced in large part by National Institutes of Health (NIH) studies and Ryan White grantees and providers.” Schwartz adds,
We go into pediatrics because we get to watch kids grow up; if you worked with kids with chronic diseases you could fix them and help them live healthy lives. But HIV is a special kind of infection: Before we had the drugs, many kids ended up dying. Now we have the drugs, and our clinics have been an extended family for these kids. Ryan White has helped these kids grow up with HIV.