Hyacinth is the only statewide AIDS service organization that addresses public policy issues surrounding how to respond to HIV, advocates for funds and services to benefit those affected by HIV/AIDS, and is committed to the fight for health care for everyone.
Our public policy program responds to a broad range of issues that affect people living with HIV and their loved ones, people at high risk of infection, and the communities highly impacted by the last 25 years of the epidemic in New Jersey. This encompasses laws and policies that govern access to care and treatment, insurance, addiction services, privacy and confidentiality, discrimination, funding for direct medical care, supportive services, and prevention.
Over the years, the program has grown and changed in its approach to advocacy. It is driven by changes in the epidemic and concurrent changes in the health care delivery system. The demographics of the people impacted by the epidemic in New Jersey have changed over the years. That in itself influences the public policy agenda more than any other factor. Although many of the same issues are still of concern, patients’ rights among them, the constituency has far fewer advocates and more struggles with health care quality and access.
Funding to compensate for lack of access to HIV medications and care is a key factor in extending the quality and length of life for many people. It also provides housing and supportive services for many who would otherwise be homeless and helpless. It has come with a price, however, and that is the establishment of a system of care that is paternalistic, judgmental, and oftentimes difficult to navigate. The system of care challenges the notion of patient autonomy and confidentiality. It also requires people living with HIV/AIDS to share an unprecedented amount of personal information, unlike those who access care through their employer or individually purchased health insurance.
HIV is unlike other diseases because the most expedient mode of transmission is through sexual and needle-sharing behaviors. This is the genesis of the very destructive stigma that those living with HIV inherited along with their diagnosis. It also created a tier system for those living with the disease—the victims and the vectors. Twenty-five years later, the public is less frightened of the disease, but the notion of innocent victims is still alive and well. Stigma still influences the programs, policies, and laws governing HIV funding and program implementation.
The majority of people living with HIV are poor. They rely on government-funded systems of care to survive. We advocate for those who have no voice in Trenton and Washington, DC. While the HIV virus does not discriminate, some lawmakers still do.