Jamille Fields, Resident Blogger (Law Students for Reproductive Justice Fellow at the National Health Law Program)
Preventing HIV and increasing access to care for people living with HIV/AIDS have long been interests of mine and is currently a part of my work portfolio. But, it was not until recently that I was introduced to the Denver Principles, which were outlined by a group of people living with AIDS in 1983–two years after the first instance of AIDS was reported. These principles changed the health care landscape for people living with HIV. I imagine other RJ advocates have not been introduced so I decided to pay it forward here.
I do not know if those who developed the Principles had the RJ framework in mind, but the principles are so RJ (or “Hella RJ” as LSRJ swag reads). Fear and discrimination of and against people living with HIV is still present, and it was even more blatant over thirty years ago. It was at this time that a group of fearless advocates stood at a gay and lesbian health conference to declare: “We condemn attempts to label us as ‘victims,’ a term which implies defeat and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People with AIDS.’” I imagine here the speaker dropped the mic and the crowd cheered. But, this powerful opening statement is only beginning of the Denver Principles.
The Principles are outlined into three different categories: (1) Recommendations for all People (aka the recommendations to be a decent human being), such as being a good ally for people living with HIV/AIDS when others attempt to separate them from their communities. (2) Recommendations for People with AIDS includes guidance for them to plan their own policy agenda. (3) The Rights of People with AIDS is where we, as lawyers, have a role to play, so I have outlined them here:
Principle 1: “To [have] as full and satisfying sexual and emotional lives as anyone else.”
This overarching guiding principle should govern the work we do as reproductive justice lawyers, whether or not we are specifically working on HIV/AIDS related care.
Principle 2: “To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.”
The Affordable Care Act § 1557(enacted 27 years after the Principles) explicitly prohibits discrimination based on race, color, national origin, sex, age, or disability in health care delivery. This is an important tool that legal advocates can use to combat discrimination against people living with HIV. Here, at the National Health Law Program, we have filed a complaint against insurance companies for charging the highest level of cost-sharing for HIV/AIDS related drugs. We believe this is discrimination against people living with HIV/AIDS.
Principle 3: “To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.”
This speaks to informed consent. Every person, including people living with HIV/AIDS, has a right to be fully informed of and to affirmatively consent to any health care procedures or research performed. This means ensuring the individual is made aware of all risks and consequences in a language and manner that ensures the person can make a voluntary choice whether to engage in the research or procedure. In general, it is important for lawyers to monitor language access and cultural competency in health care delivery.
Principle 4: “To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.”
The Health Insurance Portability and Accountability Act (HIPAA) is a federal law designed to protect the confidentiality and security of health information. In addition, states have varying laws related to confidentiality, particularly as it relates to youth. Issues of confidentiality are particularly important for people living with HIV/AIDS given the discrimination this community often encounters once their HIV status is learned. Legal advocates have a role to play in ensuring the enforcement and improving of these laws.
Principle 5: “To die – and to LIVE – in dignity.”