It wasn’t until 1981 that AIDS was first clinically observed in the United States.  Just four years later, in 1985, when Hyacinth was launched, the world was still not very familiar with the term “human immunodeficiency virus” (HIV), nor with the disease it causes, which is known as “acquired immunodeficiency syndrome” (AIDS). Nor did anyone fully comprehend its tragic effect on humans.

When the spread of HIV grew to epidemic proportions, it captured the public attention and more information became available about this disease. Because it is a blood-borne pathogen that can be sexually transmitted, there was a high death rate among those who engage in unprotected sex, most frequently among gay individuals.

Thinking back to 35 years ago, the world was very different. It was commonplace for gay men and lesbian women to be discriminated against, scorned, abused, or worse. This behavior took place at home, with family and friends, in the work place, in religious settings and in social situations. As a result, most gay men and lesbian women did not publicly acknowledge their sexual preference.

Members of the gay community faced isolation and ostracism regarding HIV

With little known about the disease, and no cure available, contracting HIV was viewed as a death sentence.  The volunteers who first came together to form the organization known as Hyacinth were themselves HIV victims with a deep understanding of the critical importance of acceptance and comfort. Aptly named Hyacinth by one of the founders (Margie Nichols) this nonprofit reflects the tenacity and hopefulness of the first flower to peek its head through the cold earth to bloom bravely each spring.  The hyacinth signifies life, and so does this organization.

The original mission behind the founding of Hyacinth was to provide warmth, acceptance, and support for those with HIV in the gay community who had no other source for the essential sympathy or encouragement they needed at such a terrible time. As such, the early objective was simply to help patients die with dignity. This was accomplished through the establishment of a strong buddy system that provided the essential emotional support that was so desperately missing.

The mission has evolved as the epidemic has been controlled

Today Hyacinth can point to the exciting fact that most people living with HIV enjoy a normal life expectancy. The mission has therefore shifted from guaranteeing individuals an environment where they can die with dignity - to providing an environment where they can learn how to live a quality life with HIV – and then ultimately to live a successful life with HIV.

It has been a wonderful transformation to behold. But the transition brings a completely different set of challenges to Hyacinth and to the volunteers and more than 100 staff who serve clients across seven sites in six New Jersey cities. Helping people die peacefully is at one end of the spectrum, but much more is now required from an organization that is dedicated to helping those it supports to live healthy, happy, fulfilled lives.

The focus has progressed from support for those who are dying to support for those who are living meaningful lives

This move puts the spotlight on the need for life skills counseling and an emphasis on healthcare and treatment, for housing, education, job training and advocacy. To achieve this, it has been important that the Hyacinth staff reflects the community it serves. Given that decision, about 85-90% of the staff are people of color; 30% are from the LGBTQ community; and 40% are living with, or have a member of their family impacted by, HIV.  Having walked the walk and talked the talk themselves, the staff is perfectly positioned to understand the clients in a way that no one else can.

What is different about Hyacinth?

While there are many organizations that do their best for the LGBTQ population, the greatest distinguishing factor at Hyacinth is their Leadership Hyacinth Program. Under their policy department, this special program has already coached 100 people or more as lobbyists. The basic underlying principle is that “You are your own expert.” After all, who could be more eloquent, and more compelling, than the very people who live successfully in the HIV world every day. Traveling to make their voices heard from Trenton, NJ to Washington, DC and back, these highly engaged volunteers draw on the Hyacinth training to help convince and influence state and national  law makers to create more practical, compassionate and fair legislation.  To that end, they testify in person, write letters, send emails, make phone calls, schedule meetings with senators and representatives, all with the purpose of addressing unpopular topics and presenting smart solutions.

What’s yet to come?

Under the leadership of Executive Director, Kathy Ahearn-O’Brien, and Linda J. Niedweske, Esq, President of the Board, the leadership team of eleven dedicated professionals and sixteen Trustees, much has been accomplished. But even while leveraging the strong legacy it has cultivated since 1985, the team is never content with the status quo. Instead, the leadership is constantly preparing to embrace a strategic plan that takes into consideration possible future changes.  This may require additional support for changing demographics as young people seek safe spaces, or race and culture differences bring their own set of complications. No matter what lies ahead, Hyacinth is poised to address the issues facing the community it serves with love and passion.