Nearly 150 people with HIV in northern Maine are at risk of losing access to vital resources after a program that managed their cases unexpectedly ended this week.
The Regional Medical Center at Lubec terminated the Northern Maine HIV Program, which serves patients in five northern Maine counties, on Monday after it was unable to find a new subcontractor. The program previously provided medical case management under a subcontract the center had with the Health Equity Alliance, known as HEAL, which closed this spring.
With the program ending, around 140 low-income people could lose access to local HIV case management.
Program employees coordinated with patients to find medical providers and help with other challenges they faced related to their HIV diagnoses, according to former case managers Samantha White and Alyssa Clayton. The program has been running for 23 years, White said.
The decision to terminate the program is “really scary,” White said, especially since it coincides with a growing HIV outbreak in Penobscot County. Two new cases were detected in June, and 26 people have been diagnosed in the outbreak since it began in October 2023.
The Regional Medical Center at Lubec decided to end the program on June 25, according to CEO Tom MacDonald.
The medical center is in the process of notifying clients by phone and mail through Wednesday, MacDonald said. He said he wasn’t sure if the center would be able to reach everyone.
Some of the clients served by the program may not have permanent addresses. Those clients may have to contact the center directly to be notified, MacDonald said.
White and Clayton had just a few days to get in touch with their clients to connect them with alternative resources.
White estimated that they successfully contacted about 20 to 25 of those clients before their positions were terminated on June 30. Some of these clients were referred to case management services in the Augusta and Portland areas, which may offer telehealth services, but there are no other programs in northern Maine that offer HIV case management.
White and Clayton worry about what it will mean for clients to lose the dedicated personal contact whose job it was to help them navigate a complex health care system.
The two case managers helped their clients make medical appointments, solve issues with pharmacies, navigate paperwork, and secure food and rent assistance through funding programs for people with HIV, they said. Homeless clients could also use the office’s address to receive mail related to those programs.
White and Clayton emphasized the urgency of connecting clients with HIV resources, especially as the outbreak in Penobscot County continues. Clayton said that around four of her clients were diagnosed as part of the outbreak.
The two case managers had been part of the program since before HEAL closed. When the nonprofit shuttered in March, the case management services were transferred to the Regional Medical Center at Lubec.
At that point, just White and Clayton were brought on to continue the case management work, according to White. Previously, HEAL typically employed around four or five case managers to help clients with HIV.
The transfer to the center was meant to be a temporary fix to give the center time to find a new subcontractor, MacDonald said.
None of the organizations the center reached out to were willing to take on the program, since they don’t provide case management services, MacDonald said. When the organization was unable to find a new subcontractor to replace HEAL, its leaders decided to end the program.
Case management is “outside the scope” of what the medical center provides, MacDonald said. “Being unable to provide that, we would be outside of the requirements of the grant” funded by the federal Ryan White HIV/AIDS program.
