A positive HIV test changes a person’s life. Too often for the worse. But sometimes it’s a wake-up call to action that has tremendous positive effect. Tyler Termeer was a college junior studying stagecraft when his HIV diagnosis compelled him to move into non-profit work. He has been an advocate of HIV awareness and services as well as a representative for living well with HIV for over a decade. A year ago he moved to Portland with his partner and their two children to become Executive Director of the Cascade AIDS Project (CAP). “This is a transformative time in HIV work. People with access to care and support live longer. I feel great and have been fortunate to work for amazing organizations.”
CAP is one of the oldest HIV organizations in the country; thirty years old this year. It began with a group of men and women sitting around a living room trying to figure out how to advocate for their friends who were dying. “Now, it’s grown up. We’ve gone from a staff of two to a six million dollar organization with a staff of 55. But the backbone of our organization is still our 600 volunteers.” CAP has evolved as people with HIV live longer. Beyond medical treatment, people need housing assistance, employment, and educational services. CAP augments its direct services by networking with other community organizations on behalf of people with HIV. “We don’t own or operate housing. We err on the side of what we know. We work with developers and advocate for affordable housing.”
CAP operated with interim directors for three years until Tyler took the reigns, pivotal years in HIV care due to the Affordable Care Act. One of Tymer’s first initiatives was to develop a five point strategic plan.
“How do we diversify our income stream from a 70/30-government/donor split? Our biggest traditional fundraiser, the AIDS Walk, has been supplanted by the largest art auction in the Northwest. We are also evaluating the vale of charging for some of our services.
“We want to strengthen organizational partnerships within the community.
“We must address health equity in the community. Access to care is much lower for economically disadvantaged, people of color, youth, and homeless people.
“We want to elevate CAPS leadership capabilities.
“Finally, we have to remain relevant as a traditional AIDS organization. Is the term AIDS limiting in this period of integrated services? Does it inhibit our ability to work with women, youth and people of color? Has the group grown too large to be considered a project? Should CAP open a federally designated health center? How can it serve Portland’s growing homeless youth, when it currently only offers services to people over eighteen? The demographic of the visible LGBTQ community in Portland is still mostly white men, but there are all these other people with HIV.”
How will we live tomorrow?
“It’s an interesting question for any AIDS service organization right now. We are living in an era where we have learned so much about the epidemic that people are living long and managed lives. People who have access and use medication are 96% less likely to transmit. People who are virally suppressed are less likely to transmit. Our challenge is to create an environment where people will stay on track with their care.
“The challenge is thinking about how far we have come and take a moment of pause to stop and think about what do we do, how well are we doing it, and have we really completed our mission?
“CAP is a medium to large organization; we do not think we should ‘go’ yet. We need to grow and change, but that growth has to have integrity with our original mission. We want to be here thirty years from now. We are purchasing a building; we are looking at an increased scope of services. We want to expand what we offer our existing population.
“I hope if we find a cure or a vaccine, we will still be living as an organization that makes sure people have access to vaccines or cures and that we exist as a historical organization that tells the story of the HIV epidemic.
“How do we get to the point when HIV segregation isn’t necessary? We should be there now. We have so many people whose cohort of conditions is more complicated than HIV. But there is still a stigma with HIV that doesn’t exist with other chronic diseases. Until that changes, we will need specialized services.
Nationally we have about 40,000 new infections per year. That remains stable. But the cascade of care is troubling. 25% of people are unaware of their status. Of the remaining 75%, not all are in care. Fewer follow all of their care procedures. Only 25% of people living with HIV have a suppressed virus. We have to do better than that.”