Today, people with HIV are living longer, but many experience additional chronic conditions such as asthma, diabetes, and cardiac problems. They also often need housing, food assistance, substance use services, job training, support groups, and treatment education. Since no single agency can meet all of these needs, some people visit dozens of organizations. As part of the Affordable Care Act, the health care legislation passed in 2010, the U.S. Department of Health and Human Services is promoting "coordinated care".
Coordinated care means collaboration among primary care doctors, medical specialists, and nonmedical providers. The National HIV/AIDS Strategy also endorses coordinated care as a promising new direction. Ideally, it means taking all of a person's needs into account instead of just treatment for symptoms as they arise. In order to be successful, it must prioritize the client's own voice in all health care decisions.
The rapid rise in U.S. health care costs has resulted less from higher quality care than from higher profits and administrative costs. Clients receive better care when they develop a plan with a single provider who anticipates long-term needs and oversees the delivery of all services. Better coordination can prevent unnecessary duplication of services and readmission to hospitals and ERs, where care is costly and rarely includes adequate follow-up. Additionally, the coordinating provider is better equipped to spot problems early and intervene before they become dangerous and expensive.
This approach seems logical, but health care in this country remains remarkably disorganized, and according to a 2008 report in the New England Journal of Medicine, little consultation occurs between providers, even in dire situations. When a recently hospitalized client returns to a primary care doctor, it is unlikely that doctor will have received any information about the discharge plan. The report also estimates that 33% of physicians do not consistently notify their patients about abnormal test results.
Our health care system still functions on a profit-driven model that prioritizes short-term payment over the long-term well-being of patients. How are people supposed to manage their care if no one sees the full picture of their health?
People with HIV who have other conditions are far more likely to report undergoing unnecessary procedures and, worse, having serious ailments overlooked. Faulty referrals and incomplete background information make them more likely to be unnecessarily hospitalized, which can raise costs, stress, and stigma. These negative experiences, combined with a feeling of alienation from uninformed providers, can lead them to forgo care altogether. This lack of coordination can perpetuate health disparities, leaving the most vulnerable populations without adequate health support.
Many people with HIV manage their care and services through COBRA, a case management program that connects Medicaid clients with comprehensive services. But COBRA is underfunded and does little to encourage communication among providers. The Affordable Care Act gives states the option of providing "Health Homes" services for Medicaid enrollees, and they are encouraged to do so, with the federal government covering 90% of the cost in the first two years.
According to guidelines released by the Centers for Medicare and Medicaid Services (CMS), a designated Health Homes provider will oversee all care, linking clients to a team of specialists, nurses, pharmacists, dieticians, social workers, behavioral health providers, chiropractors, and even alternative medicine providers. The guidelines include important factors like transitional and culturally appropriate care, aimed at maintaining people with chronic conditions in care for the long term.
So far, providers and clients alike have been frustrated by the lack of available information regarding Health Homes, and many worry that the transition into coordinated care could disrupt current client-provider relationships, particularly for those in Medicaid-paid COBRA case management.
Care coordination is an essential step in the fight to end AIDS, but only if clients have control. They must feel a sense of ownership over their own health, and personally commit to adhering to care. CMS has recommended that states treat the "whole person" by incorporating the voice of clients, and it is our responsibility as health care advocates to ensure this. Coordinated care can save Medicaid dollars, but only if quality health care remains the first priority.
Health Homes has potential for building trusting relationships that will take precedence over profit. Its success or failure depends on a collective effort to monitor and critique the program. We must build alliances among clients, providers, public and private insurers, health delivery systems, and community and labor organizations. And we must pay close attention to the implementation of the Health Homes program to ensure that it adequately addresses health disparities and bring new opportunities to people with HIV.