Antiretroviral treatment has extended the lifespan of people with HIV infection, and more people become infected with HIV than die from the disease each year. Since the mid-1990s, the age-adjusted HIV death rate has declined by more than 70 percent (Kaiser Family Foundation, 2008). As more people with HIV infection live longer, the demand for HIV care and treatment will continue to grow. For HIV, medication compliance is especially important in order to help prevent the virus’s resistance to therapy, so this is one reason that disease management programs that offer treatment adherence support may be a useful approach for HIV patients in particular.
As of October 2008, CMS had approved Medicaid waivers specifically targeted to HIV-positive populations in Alabama, California, Colorado, Delaware, the District of Columbia, Florida, Hawaii, Illinois, Iowa, Maine, Missouri, New Jersey, New Mexico, North Carolina, Pennsylvania, South Carolina, and Virginia. Most of these Medicaid programs are Section 1915(c) home and community-based service waiver programs, which offer benefits like case management and private duty nursing as an alternative to institutional care. The District of Columbia and Maine implemented Section 1115 waivers to enroll HIV-infected individuals in Medicaid who would not otherwise be Medicaid-eligible unless their health deteriorated to the point of disability. These waiver programs target HIV populations for Medicaid but were not established for the purpose of offering DM.
The table in Appendix A lists approved Medicaid 1915(c) HIV/AIDS waivers and the Medicaid managed care waivers that include DM or other special services for enrollees with HIV/AIDS. The 1915(c) waivers targeted to HIV/AIDS populations typically offer case management, not DM. DMAA, the disease management trade association, has defined DM as “a system of coordinated healthcare interventions and communications for populations with conditions in which self-care efforts are significant.” Case management differs from disease management because it is intended to provide assistance for both medical and social services needs. Medical case management is another term for coordination activities centered around supporting patients’ engagement with primary care services. A scientific statement from the American Heart Association noted that a comprehensive definition of DM still needs to be established. Without a standardized definition for DM and the specific interventions that DM entails, making comparisons of program effectiveness is more difficult.
Case management is offered in many Medicaid HIV waiver programs, but HIV disease management programs are not as common in Medicaid. Florida was an early implementer of Medicaid DM, beginning its program in 1997. The DM program in Florida targeted several chronic conditions and was reported to have saved the state a total of $41.9 million in medical costs (for all conditions) during the first 27 months of operation (White et al., 2005). It was later in 1999 that Florida initiated its HIV disease management program, and it is still in operation today using a DM vendor to provide services. No recent analyses of Florida’s program have been published, but an examination of trends since the program began would be useful to show net savings achieved over time and to identify any particular features of the program that seemed to influence the positive results.
Although there is a growing trend of implementing DM in Medicaid, currently only Florida and Virginia offer targeted HIV disease management for Medicaid enrollees. California only recently began implementation of its Medicaid HIV DM pilot program. In 2004, Indiana passed a law removing HIV/AIDS from the list of conditions targeted in its Medicaid DM program because of concerns that HIV is not an appropriate condition to target for achieving cost savings – perhaps due to the fact that the high cost of HIV care is largely attributable to medications that help extend lifespan; therefore, reducing the costs of HIV care might mean cutting lives short. HIV is unique among chronic conditions, largely because of the dramatic decrease in AIDS mortality since the 1990s and the rising utilization and high prices of new medications like fusion inhibitors to treat HIV disease. It is estimated that 73 percent of the lifetime cost of HIV care is attributable to antiretroviral medications (Schackman et al., 2006). It is unknown whether any other states besides Indiana have debated the appropriateness of implementing specialized HIV disease management in Medicaid. However, because many people living with HIV/AIDS have Medicaid coverage, it is likely that costs for HIV medications will continue to contribute to states’ increasing Medicaid expenditures.
In FY 2009, ASPE is conducting case studies of two models of disease management intervention targeted to low-income patients with HIV/AIDS. The ASPE study includes a vendor-based Medicaid HIV disease management program and a clinic provider-based care coordination model for people living with HIV. Important issues such as provider staffing and coordination, patient characteristics, and measuring program impacts will be examined in the study. Lessons learned from these programs, which have been in operation for more than 10 years, will help to identify promising practices and challenges associated with financing and implementing care coordination and disease management for HIV patients.