specialty care to community-based programs. Title V programs work collaboratively with many other state agencies and programs to build an infrastructure that addresses HIV/AIDS prevention and care.
As in many states, the Massachusetts Title V program uses a range of approaches to address HIV/AIDS, including conducting a needs assessment to identify gaps in services, and developing and obtaining Ryan White Title IV funding for a regionalized care system. Under this system, pediatric HIV specialists provide care in community sites once a month in conjunction with local pediatric primary care providers. This allows families to receive high-level services in their own communities, an approach that reflects the Title V mandate and commitment to providing family-centered, community-based care. One of the lessons learned from interviews conducted by the Massachusetts Title V program is that families say their greatest need is for assistance in dealing with HIV/AIDS-related discrimination and stigma.
Among the barriers faced by state Title V programs as well as other providers are organizational/agency ''turfism"; the tendency to focus on public providers (where there is more direct clout); and not recognizing the power of the "bully pulpit" in persuading private providers of the value of universally offering counseling and testing.
Johanna Daily, an infectious disease consultant with a New England HMO, spoke based on her experience and that of colleagues working in managed care environments. She made the following points. (1) Strategies to change managed care practices need to take into account the fact that within any given practice, guidelines of the managed care organization with which they contract may vary tremendously. While some of the larger HMOs have enough staff to write HIV protocols and have nurse practitioners to implement them, others do not. (2) The cost-effectiveness issue needs to be addressed. For many HMOs, decisions are made based on whether universal counseling and testing are cost-effective, and for many the impression is they are not. It would be useful to have data comparing the costs of care for an HIV-infected infant with the cost of offering universal counseling and testing. (3) Dr. Daily noted that in her own HMO, the initial prenatal visit is carried out by nurse midwives, who use a checklist approach to testing and uniformly counsel all pregnant women. This approach seems to work well. (4) HMO collaboration with the NIH or other research programs is very