Strength in Numbers
The Long-Term Survivor Network of LKA-PDX Creates Community
by John Francis Leonard

Photos by Fred Luna

Portland, Oregon, is a city known for its progressive values. Like many larger cities serving an urban population, as well as a regional one, agencies and organizations are in place to serve the needs of individuals coping with HIV and its effects. But, as in many communities like it, the needs of a growing and changing demographic dealing with HIV’s long-term effects can remain underserved. Let’s Kick A.S.S. (AIDS Survivor Syndrome) PDX is looking to meet the needs of that community in a unique way.

Like it’s sister chapters in other cities, LKA-PDX primarily addresses a core issue for those living with HIV—isolation, and a lack of a feeling of belonging to a community. This alienation can even be true in highly populated urban areas like Portland, and even more so the more sparsely populated areas of its state and region. Those who survived the worst years of the plague can often feel left behind and alone, further compounded by feelings of survivor’s guilt and even PTSD.

LKA-PDX member Troy Preble says, “After moving to Portland, I began to feel isolation surrounding my HIV status. I suddenly did not know anyone in [this city] with the same experiences and that left me feeling alone.” LKA-PDX is meeting the needs of members like Troy beautifully and has built an organization for HIV long-term survivors founded and run by, and made up of, those very survivors.

It was a trip to San Francisco, where LKA’s first chapter was founded by Tez Anderson, that got the ball rolling in 2014. Several people, in particular Jim Clay, had attended one of their events and got a group of people interested in starting a Portland chapter when they arrived home. They wanted to expand on what was being done in San Francisco. Led by board members Steve Headington, John Flack, and Tod Pitstick, it was decided that they would empower their members to make a difference in their community, whether in their homebase of Portland or across the state.

What they’ve done is succeed in building a village in the truest sense. LKA-PDX President Steve Headington recalls that it all started with their very popular Coffee Socials, now held at the Quest Center for Integrative Health on Saturday mornings from 10 a.m. to noon. “It was entirely member-supported in a ‘pass the hat’ fashion and grew from there,” he continues. At this coffee group, he says that members can socialize and receive much needed non-clinical peer support and just relax among their friends. The Coffee Social remains their most popular event and many of their new concepts for events and peer-led support services come to fruition here.

Everything was built upon these gatherings and grew from them organically. Other activities include monthly brunches and dinners, movie nights, and camping trips, hikes and nature walks.

Members hear of the group through word of mouth as well as through social media. Local AIDS service organizations as well as many area physicians often refer their clients to LKA-PDX. The organization also provides outreach and information at events like Gay Pride Day, World AIDS Day, and Long Term Survivor’s Day, which is held in Portland on June 5 every year. They hold tables at these community events, reaching out to new members, fundraising, and selling merchandise.

When you’re HIV positive you can grow tired of agencies and service organizations telling you what to do, where to go, and when to do it. LKA-PDX hands that power to its members. When you have an idea for something, you find two other members who are interested and bring it to leadership. LKA-PDX empowers these members—it doesn’t dictate. Everything they do is member-created. There are group activities, such as the movie outings mentioned earlier, as well as often-requested one-on-one interactions with other members. If someone just wants to grab coffee or see a film with one of their peers, LKA matches them up with a buddy. This sense of community, built out of an extended family of survivors, is central to the group’s mission to end the isolation experienced by LTS.

Another invaluable method of help focuses on individuals new to the surrounding Portland area. LKA members will drive those who are newly arrived around, acquainting them with the area and services they will require such as doctor’s offices, pharmacies and service organizations.

LKA-PDX defines an LTS as anyone living with HIV pre-HAART, post-HAART individuals living with HIV for ten or more years, adults who acquired HIV as children, and individuals, including board member, marketing, communications, and social media director Marie Fisher, who lost many friends and family members in the worst years of the crisis but remain HIV-negative. But no proof of eligibility is asked for or required and one of the organization’s strengths is its expansion of what it means to be a long-term survivor of HIV/AIDS.

LKA-PDX is at heart about inclusion, not exclusion, Fisher declares with much pride. Faced with numerous younger people more newly diagnosed and interested in joining, they developed a buddy program pairing those just dealing with HIV with their members who are more traditionally defined LTS.

One of LKA-PDX’s goals for 2017 is broadening the diversity of its members. They hope to reach more female, transgender, and ethnically diverse communities. They don’t consider themselves a men’s group nor an LGBT group, but simply a group for anyone dealing with the long-term effects of HIV regardless of sexuality, gender, or socio-economic background, Fisher points out. They are working closely with local agencies to make certain that a diverse group of people will feel welcome to their group. Since no detailed questions are asked of potential members, remarks Steve Headington, those who are undocumented are free to participate in the group without fear of repercussions.

But its member’s aren’t just members; they’re volunteers in and for their community. All of the activities and benefits provided by the group come from the hard work of its members. Members visit other members in the hospital, accompany their peers on doctor’s visits, and take those in need grocery shopping. What better way to end social isolation is there than getting involved and making a difference?

Many members as well as those on the board share a history of HIV/AIDS activism and advocacy. One long-standing member was a male prison guard in the early days of the crisis. He was the only member of the prison staff who at the time would do intake for AIDS patients and was often the only one willing to serve their meals. It had a profound effect on him, one he still lives with today.

They bring this experience, both professional and volunteer-based, to the table when they join the group. Headington offers the example of members volunteering for local organizations such as the HIV Day Center (EMO) and the Daily Bread Express, providing and delivering meals to the HIV-positive in need of food assistance. He further elaborates that members work in tandem with many local agencies who provide services to the aging, individuals living with disabilities, and veterans providing volunteer support and in turn receiving referrals for those interested and in need of what they provide.

Marie Fisher is proud of a recent watershed for LKA-PDX—the acquisition of its 501(c)(3) status. As a tax-exempt nonprofit, LKA-PDX will be able to raise funds and solicit donations more successfully. They’ve also been able to apply for grants for the first time this year. These developments will serve to broaden the reach and breadth of what they can provide for their members considerably. So far this year, LKA-PDX hosted at a restaurant fundraiser for April 2017’s Dining Out for Life event in Portland. They don’t receive funding from this event but see it as yet another valuable way to be involved in their community. Another group they’ve been working with closely is the Oregon AARP, with whom they’re currently collaborating on a film project for the September 18th HIV/AIDS Aging and Awareness Day event.

LKA-PDX board members are quick to point out that they’re not a “service” organization per se. They don’t offer things like clinical services and professional help. But what they do provide is invaluable for the LTS community in their area—that is, a real sense of community at a time in life when those who have survived HIV are feeling the most isolated. And, in a sense, they do provide invaluable peer-provided services where many state, city, and federal agencies fall short. With members facing cutbacks in funding to the services they need by an increasingly hostile administration, even just the emotional support they provide will be all the more invaluable. The support they receive from this group greatly relieves their stress over what could happen.

Everything they have achieved is remarkable for an organization that receives no federal or state funding—their success is a testament to the actual LTS who have built it from the ground up.

For more information on LKA-PDX, log on to:

John Francis Leonard interviewed Benjamin Di’Costa for the April issue. Follow him on Twitter @JohnFrancisleo2.