“First, do no harm.” Is this too much for people to ask of the Mississippi State Department of Health (MSDH)? Unfortunately, the way the state is managing its housing program for people with HIV/AIDS, it seems to indicate that the answer is yes.

The federal government sends about $2 million a year to Mississippi under a program called Housing Opportunities for People With AIDS (HOPWA). It’s designed to assist low income people with emergency, short- and long-term housing needs, as well as to provide case management and support services that are vital to keeping people with HIV healthy. MSDH is responsible for the state’s HOPWA program and the results have been nothing short of disastrous.

Two years ago, both Human Rights Watch and a team from Harvard Law School found serious flaws in Mississippi’s HOPWA program. Offering limited services to a small number of people, the program also failed to report key data about the need for housing that could enable it to grow. HOPWA in Mississippi helped fewer than 1,000 people in 2010, although the Mississippi Development Authority has estimated that at least a third of the state’s 10,000 people with HIV have unmet housing needs.

To its credit, MSDH responded to these reports by asking the federal government to help it improve its HOPWA program. That well-intentioned move has led us to the crisis we are in now—the feds came in and shut the program down.

In the summer of 2012, the U.S. Department of Housing and Urban Development (HUD) issued a report that determined so many rules were being broken, so much of the money was going for the wrong purposes, and the paperwork was so poor, that a complete overhaul was needed. The entire program was suspended.

Neither the federal or the state government felt it was necessary to let people with HIV know what was happening or involve them in the process in a meaningful way. The state met with housing advocates in August 2012, but people with HIV were not included in this meeting. Applications in the pipeline were simply rejected until further notice and no new applications were taken. Emergency housing became available again in December 2012, but people who had depended on short-term rental assistance were no longer eligible for the program.

Many people, including myself, were turned away without any information, referrals or explanation. In fact, some folks I know were told by MSDH that the program was stopped because the clients had “abused” the program for too long.

The program definitely needed an overhaul, but many questions remain. Why did the federal government let Mississippi HOPWA underserve us for decades? What will happen to the money that was not used during the suspension?

In legal terms, this is called a lack of transparency. In human terms, it is heartless and cold. That is how it feels to the hundreds of us who were told by the health department that unless we could prove we were being evicted, don’t bother to apply for HOPWA. When I heard this news, my precarious budget and my fragile health collapsed together and I am still trying to recover.

According to MSDH, it will “keep the community advised” of its progress as it restructures HOPWA in the coming months. But people with HIV deserve more than an occasional bulletin from a bureaucracy that has for too long failed to consult, include or respect us.

“Nothing about us without us” is a fundamental principle established long ago by HIV-positive people as we fought for our rights, our health and our lives. There needs to be a transition program for people who were relying on HOPWA to survive—and people with HIV need to be brought on board immediately to help implementation.

MSDH needs to convene a community advisory board to work in partnership throughout this process so that the new HOPWA program reflects the needs of the people it is intended to serve. Most importantly, people with HIV must demand participation in every aspect of Mississippi’s HIV programs—or neglect, mismanagement and additional harm will be our future, as well as our past.