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A Bill of Rights for People Living with HIV

We live in a society that is increasingly more inclusive, but reservoirs of prejudice, racism, poverty, and homophobia remain to be drained. These reservoirs are filled by structural sins that will take generations to overcome. In the meantime, suffering goes on today. For example, while many of us take our places in our communities for granted, many people living with HIV live out their lives in fear that disclosure of their HIV status would mean losing a job, housing, relationships, community - all of the things that make us human. We fail these people, and we fail ourselves, when we ignore the intolerable burden of suffering that our apathy and inaction cause them to bear.

Marginalization of people because they have a diagnosis of HIV is mean-spirited, intolerable, and cruel. The time has come to create innovative approaches to HIV care that focus on the needs of those that are unable to come to clinic and fit into existing models of care. We recognize that current approaches to clinic-based care have reached the people who can function within those constraints. We must be open to new approaches to care that address the unique needs of people who do not fit into current approaches to care are therefore not engaging in care. Most importantly, we call for healthcare that is grounded in seeing, acknowledging, and honoring the agency and dignity of every person in every encounter.

Accordingly, we call on clinicians, administrators, and funders to join us in a new conversation about changing approaches to care from ones that are convenient and comfortable for clinics and providers to new approaches that are convenient and comfortable for patients.

We believe the following nine statements to be true and we support efforts to re-imagine HIV care for the benefit of those unable to seek care in the current environment.

Everyone has the right to care driven by their needs. Agency and dignity are inherent in each of us, regardless of our circumstances at any given moment, and those attributes are to be nurtured and celebrated.

Everyone has the right to care that respects their language, sexual identity, life experiences, and their current social and physical environment.

Everyone has the right to care focused on their strengths, not on their weaknesses.

Everyone has the right to see a provider of their own choosing.

Everyone has the right to fully integrated care at one location, closely coordinated with HIV care.

Everyone has the right to expect all members of their care team to be in ongoing communication with each other.

Everyone has the right to participate in creating their own plans of care, including identifying and prioritizing their goals.

Everyone has the right to hold their care teams to a higher standard, confidently expecting care teams to be innovative and resourceful, getting care to patients when and where patients can comfortably access care.

Everyone has the right to total privacy in clinic. Supporting clinics have a zero tolerance policy with violators, assertively pursuing breach of privacy complaints when outside referrals violate this policy.