How far has the stigma around AIDS really faded?

In the 1980s, finding housing wasn’t easy for a gay man with HIV. Stigma and discrimination abounded related to sexual orientation and disease status. the lack of treatment for HIV and AIDS meant that man would likely get sick and die.

When AIDS action Committee started in the 1980s as part of Fenway Health, there was a desperate need for an organization to provide not just health care, but the full range of services that people living with or at risk for HIV and AIDS needed, from housing to legal aid.

AIDS action Committee would spin off into an independent organization, then rejoin Fenway Health in 2013, integrating into its public health department. now, Fenway Health, a community health center specializing in care for the LGBTQ population, is preparing to stop providing some of the non-health care services it took over when it acquired AIDS action Committee. those services including housing and legal services to people living with HIV and a “Youth on Fire” program in Cambridge, which offers homeless and at-risk youth services like food, clothing, medical care, and HIV prevention education.

all these services, and the state contracts that pay for them, will be transferred to different organizations that specialize in providing housing, legal, or youth services, on July 1. the names of those organizations have not been released, since contract negotiations are ongoing. the assumption is that if housing and legal aid groups might not have been able or willing to serve AIDS patients decades ago, they are now.

in fiscal 2024, the massachusetts Department of Public Health is paying Fenway Health $1.26 million for housing search and rental assistance programs; $463,000 for legal services; and $315,000 for Youth on Fire. Fenway Health’s latest annual report did not quantify how many people were assisted by housing programs, but said legal services took on 214 cases in fiscal 2022 and Youth on Fire served 116 people.

in some ways, the move reflects the positive strides society has made in HIV/AIDS care. there are effective treatments and preventative measures. Discrimination based on sexual orientation and disability status is prohibited by federal and state laws. “Someone living with HIV who needs housing assistance can get those services at an organization that specializes in housing,” said Sean Cahill, director of health policy research at the Fenway institute, the research arm of Fenway Health. “they don’t have to get it from Fenway Health.”

the decision is also financial. as the globe reported last year, Fenway Health has been losing money in its pharmacy because a common HIV prevention drug became available in generic forms. Like other health care organizations, it has suffered from staff turnover, and it has also undergone turmoil among top leadership and questions about its commitment to racial equity, the globe reported.

Fenway Health officials say the latest moves are part of a decision to refocus on its core mission — providing health care and doing health-related research. the organization is also closing the Boomerangs thrift stores and ending in-house management of pharmacy, information technology, data and analytics, and credentialing, services it will buy from Community Care Cooperative.

But the move is raising concerns from people who say the stigma around HIV/AIDS remains, and there is an ongoing need for services tailored to the needs of today’s AIDS patients, ideally under the same roof where they get their health care.

Part of the challenge is many of those living with HIV today are from populations that already face stigma. While HIV still most commonly spreads among men who have sex with men, according to Department of Public Health data as of January 1, 2023, 15 percent of those living with HIV in massachusetts were exposed through intravenous drug use, and drug users were the least likely to have their virus controlled by medication. new diagnosis rates between 2019 and 2021 in massachusetts among Black and Hispanic/Latino individuals were, respectively, eight and four times that of whites, and 41 percent of those newly diagnosed with HIV were born outside the United States, according to the DPH data. a majority of people newly diagnosed with HIV live in areas with high rates of “social vulnerability,” a measure correlated with low socioeconomic status. that means those living with HIV are affected by factors like racism, poverty, stigma around drug use, and immigration-related barriers. Some are dealing with complications around aging, since HIV medication lets people live longer.

Emily Cohen, a nurse who works in HIV care and is unaffiliated with Fenway Health, pointed to the 2021 HIV outbreak among homeless people who use drugs in Boston, a population who Cohen said often delay medical treatment for fear of being treated poorly. Cohen said the value of having housing and legal services provided by an organization like the former AIDS action Committee or Fenway Health is that staff recognize the unique challenges these patients face. “the considerable stigma and discrimination faced by people living with HIV are among the most pervasive and consequential challenges to successful HIV prevention, treatment, and care,” Cohen said. “AAC knew this, and across their continuum of services, help people not only test, access treatment, and prevent but understand the stigma associated with housing, and the unfortunate and common legal issues that occur with this intersection of populations.”

State Senator Julian Cyr said Fenway Health has been “an indispensable provider” of health care for some of massachusetts’s most vulnerable people, and he worries what the shift means about Fenway Health’s finances. “Hopefully, there are other organizations who can step in and continue this critical state-funded work. However, i’m disappointed as both a patient of Fenway Health and a leader in the LGBTQ community that Fenway didn’t engage their allies sooner in ensuring the stability of their operations,” Cyr said.

State authorities who made the grants to Fenway Health should keep a careful eye on the quality of services as they move to other organizations. it’s possible the transition will provide people with HIV with more specialized services from experts focused on housing and legal aid. But practitioners will have to make robust efforts to ensure that patients, regardless of demographics, can continue to easily access health, housing, legal, and youth services. there will need to be an easy way for them to transition from one agency to another. if services no longer exist through the same organization where clients are getting medical care, the services will need to happen elsewhere in a place that is geographically convenient and stigma-free with experts who speak their language and understand the needs of a population living with or at risk for a chronic disease.

The move is raising concerns from people who say the stigma around HIV/AIDS remains, and there is an ongoing need for services tailored to the needs of today’s AIDS patients, ideally under the same roof where they get their health care.