Ryan White "Care Coordination" Raises Eyebrows

New NYC DOH Ryan White plan favors hospitals over CBOs and duplicates COBRA services; advocates outraged

At the last New York City Ryan White planning council meeting in July before the new members take over, the council voted that Ryan White dollars can be used for "HIV Care Coordination," a new initiative intended to reach approximately 4,000 New York City residents living with AIDS who are not accessing AIDS care and services. The new plan sounded like a good idea in theory. But when the full details were revealed at an open meeting last week, advocates were outraged.

The proposed plan would shut out many small community-based organizations in favor of large hospitals. In addition, the plan duplicates services already covered by COBRA case management. Since COBRA services are covered by Medicaid, using Ryan White money possibly violates the federal mandate that Ryan White is the "payer of last resort" and wastes Ryan White dollars on services that are already covered by Medicaid.

The New York City Department of Health (DOH) said the Care Coordination plan would cover people not covered by Medicaid. It has already identified 4,714 people that lapsed out of care since 2005, and hopes this new program will bring them into care. The NYC DOH hasn't identified a budget, but advocates estimate the plan will cost $18 million in Ryan White Part A dollars. The NYC DOH has already created an RFP for hospitals and CBOs and is well on its way to implementing the system.

According to the NYC DOH, the Care Coordination is defined as the following:

  • Combines elements of navigation and chronic care models to both train patients in becoming self-sufficient and to assist them in accessing needed care and services. The focus is on navigating the system to obtain services and couching for self-sufficiency.
  • Key strategies include multi disciplinary teams, care navigation, health education, medication adherence, social services and benefit assistance and directly observed therapy (DOT).
  • Effective care management requires a concerted public health approach to maintain engagement in care and return those lost to follow-up.

Reinventing the Wheel?

Unlike with COBRA, case managers in the Care Coordination plan won't have to be linked to community-based organizations and can operate out of hospitals. The focus on hospitals for providing case management scares a Designated AIDS Care Center administrator at a major New York hospital. "Community-based organizations have access to the communities in a way hospitals don't," said the source, who wished to remain anonymous since his hospital would benefit from the new plan. "It's flawed in so many aspects. I see more hindrances in care coordination. As a hospital provider I can probably only afford to work with one CBO, because I can't let an employee from another agency have access to my client files. But we have clients who live in the five boroughs. The primary focus for case management should be for CBOs, the way it is with COBRA."

With the exception of "medical adherence" the services Care Coordination provides is almost identical to COBRA case management. "Why don't we just add an add-on to COBRA for Ryan White to pay for this instead of duplicating the entire system?" asked Matthew Lesieur, director of public policy for Village Care of New York/National Association of People With AIDS.

The DOH claims that the new care coordination targets people not connected to care. However, unless these people are not eligible for Medicaid (for example, undocumented immigrants or people with too high of an income to qualify for Medicaid), Lesieur is skeptical that this new system will solve the problem of getting people into care.

"If all these thousands of people not in care are undocumented immigrants than maybe it's a good model," Lesieur said. "But if these people not connected to care are already eligible for Medicaid and need more aggressive efforts to get them in, copying an existing system isn't going to get them into care."

Dr. Fabienne Laroque, NYC DOH director of care, treatment and housing, said at the meeting that the NYC DOH has been working with the New York State AIDS Institute to coordinate any overlap, but sources say the AIDS Institute said it was unaware of the new regulations. Laroque also made clear that this program was only intended for the 4,174 people identified as needing care, not those who qualify for Medicaid. Laroque also said that hospitals wouldn't be required to partner with CBOs, but added it would be beneficial for them to do so.

A spokesperson for the DOH wouldn't address questions relating to Medicaid, but said, "With the advent of antiretroviral therapy, HIV/AIDS has increasingly become a chronic disease requiring long-term management. We need to use the best methods and resources to help more people stay healthy, and prevent early deaths -- particularly for those people living with HIV/AIDS with unstable housing, mental illness, and problems with drug or alcohol addiction."

The New York State AIDS Institute's conservative estimate is that 51,000 people with AIDS in New York City are on Medicaid. More than 100,000 people in the City have HIV/AIDS, but many do not know their status.