Giving Back
Jeffrey Long Talks with A&U’s Chael Needle About Dedicating His Life with Advocacy

Health comes first, as HIV/AIDS advocate Jeffrey Long knows. But health is intertwined with advocacy, too. So his advocacy became limited but never squelched when COVID hit close to home.

First, his mother acquired the first variant, shares the Cherokee, North Carolina-based advocate and it “knocked her down to the bare minimum of life….” He sought caregiving advice online from his doctor and nurse friends, who, always on stand-by, offered tips and a sense of calm. And he coped through humor, too—the best medicine. “I played around on social media as Nurse Ratched,” he jokes, referencing the stringent and bullying One Flew Over the Cuckoo’s Nest character. He needed the outlet, he says. “I was freaking the **** out.”

His mother, who is now recovered, was part of the first wave of COVID infection, before the first shot had become available. Long says: “My mother did pull through two and a half months later. I mean, it really put her down, muscle aches, slept the whole time, no desire to eat, no taste, smell, hard to breathe, memory loss, you know, all those symptoms.”

“She is seventy-four and in pretty good health, a diabetic as most Natives are because of our high fat diets. I was taking her food, making her get up and walk a bit, making her shower, changing the sheets every time I got her out of bed, Lysoling everything, cleaning everything, My adrenaline shot through the roof. I barricaded my driveway because Tribal members take care of their own, [and] once they hear you have it, they are bringing you medicines to get over this Uktena, this snake that is killing us. I left a bin outside for people to drop and go,” he explains about the safety measure.

“I never wore a mask around my mother, living with HIV; she is my rock, if she was going, I was going too. I never contracted COVID through the whole bout with my mother,” he says. As his mother’s convalescence happened in the middle of everyone getting their shots, he suspects his antiretroviral medication and his adherence to it saved him. Now everyone is boosted.

His mother’s first steps to recovery surprised him: “All of a sudden, she gets up and wants to walk, it was winter, January when this hit our household, which consists of my mother and I, so I walked with her to the mailbox and back, she was winded, and to this day, she still gets winded, she’s a hamburger girl, too, she loves a good hamburger, not anymore, beef smell gets to her and no more hamburgers, she still has trouble with her hands, with numbness in her fingertips, no hair loss that I have noticed, I cut her hair for her, but that was the scariest two months of my life all while watching my father [who also contracted COVID in his nursing home] slowly pass before my eyes with the dementia, so I am wrapping my mother in bubble wrap to keep her safe.”

Advocacy became intermittent. It almost halted completely when he was taking care of his mother and then had to lay his father to rest right before Christmas. He resumed as he found new projects and tended to his own mental health and doctor’s appointments. Jeffrey was able to speak on several panels and participated in (sometimes back-to-back) meetings via Zoom.

He is used to online work, coming from and working with people in rural towns. The lack of broadband in the western end of the state where he lives, in the Appalachian Mountains, “right smack dab on top of a mountain,” is a “huge hindrance,” he notes, so online advocacy and attending virtual conferences using expensive satellite Internet is sometimes a struggle. Notes Jeffrey: “I rely heavily on the Internet because we’re so rural, and it sometimes is the only way to get the word out on anything.”

A member of the Eastern Band of Cherokee Indians, Jeffrey became an advocate five or six years ago. “I have never kept a count of actually how long because that wasn’t important to me at that time,” he tells me. What was important to him was starting his advocacy right away. He was prompted by the death of his long-term partner, John, who had always wanted Jeffrey to do advocacy based on his HIV status. When John passed, says Jeffrey, “I was lost and advocacy kinda saved my life. A friend who works at WNCAP (Western North Carolina AIDS Project) in Asheville, North Carolina, sent me on this two-year stint with the state of North Carolina on the HPCAC board.” HPCAC stands for the NC HIV/AIDS Prevention and Care Advisory Committee. (Jeffrey relates the full story later.)

“From there my name blew up because I was the only Native person doing this type of work, and still am in parts of North Carolina, I do believe….”

Long works with NCAAN, NC AIDS Action Network out of Charlotte, and travels to Washington, D.C., and to Raleigh, the state capital of North Carolina, to speak with senators and representatives on healthcare issues.

He currently serves on the board as a North Carolina Liaison with NNAAPC, National Native American AIDS Prevention Center, out of Colorado.
In his town of Cherokee, he serves on the board of the Tribal Health Initiative Project, as well as on the Syringe Access Committee, and, in Franklin, at Full Recovery, bringing his experience in harm reduction to bear.

“I have always told myself that I will do this till my body won’t let me anymore,” Jeffrey shares. “Advocacy is a huge part of my life, [and] burn-outs happen along the way, but I just switch my mind to a different project and things seem new again. Advocacy for life. Advocates scream the loudest, and I have a mouth!”
A&U had the opportunity to correspond with Jeffrey Long to discuss his advocacy.

Chael Needle:Your husband, who passed away, is in part responsible for your HIV advocacy. Could you tell me more about him and how you started in advocacy?
Jeffrey Long: My deceased husband, [we were] never properly married, just had a civil ceremony in the backyard with a few close friends to celebrate the moment with us. Yes, he pretty much provoked me into my advocacy work. [Living in Cherokee] we were in a serodiscordant relationship with two different paths healthwise and lifestyle-wise. He was bisexual and had produced a child with a woman at his work.…

The news led to a break-up and a huge move for me back to Chicago, where we met. I went home and basically became a “whore,” if you will; I went out every night, took home many strangers without protection and sometimes was too coked up to even think about a condom. I contracted HIV Stage 4 (at that time, we called it “full-blown AIDS”), to [the point] where I was on death’s doorstep.

The powers that be nursed me back to health, and in the meantime I mended my relationship with my husband. As the relationship blossomed back to its intended course, his psoriasis flared up really bad. Enbrel was prescribed, which meant [his immune system became weakened] with the medicines whereas I was on the opposite end of the spectrum, trying to keep my immune system as [strong] as I could.…I became undetectable; adherence to medication had saved my life but was tearing up my body at the same time.

During this, I lost my husband to pneumonia. He was always getting sick; [he] couldn’t shake simple colds because of Enbrel and his [weakened immune system].
While he was alive, as we were repairing our relationship, he always encouraged me to do something about [my HIV status]. He took me to support groups for PLWH; he supported me in every way possible. Sex became as safe as possible but made fun, so I am full of gratitude for my life with him.

His encouragement finally hit me one day. I got up off my ass, took my depression medicine and decided to find something to do. It just so happened that I took my mother to Gay Pride in Charlotte, North Carolina, where I ran into a friend from WNCAP, Michael Harney.

Michael has been a very good friend of mine for…I could not even tell you where I met him, some house party, I suspect. I knew what he did for a living, but we hung out at the clubs together; he was “The Rubber Man” who brought the condoms to the bars for the condom dishes. Sometimes we would hang while hitting all the bars downtown Asheville. Gay bars, straight bars, lesbian bars, it didn’t matter—he filled up the condom dishes every weekend and I would get bored and walk with him [as he made the rounds].

Life carried on, and then one year, I wanted to see Del Shores, Sordid Lives director, at the Charlotte Pride weekend. So we traveled to Pride, I get my autograph, then I run into Michael. He asked me if I would like to represent our region at the state meetings on HIV; I said yes, not knowing what I was getting into. I filled out all the paperwork, was accepted by the board and from there my advocacy took off. My advocacy had started.

A great start! Tell me more about how your advocacy took off. How did you get your footing as an advocate and where (else) did you land?
My advocacy took off because I am the only one west of Asheville here in the Appalachian mountains doing any type of work like this. I started off specializing in harm reduction, moved on over to HIV and hep C because all three swim in the same fish bowl, if you will.

So I will give credit for my advocacy to Michael and, to this day, we are close as ever. He is so proud of me with all the projects I take on, the interviews we do, as well as the legislative aspect too. I work with many a different organizations, as I mentioned before. Hard work has paid off for me. My latest achievement is becoming a board member for SEEDS of Healing, Inc. [an HIV awareness and advocacy resource in Wilmington, in the southeast region of North Carolina].

I am loving my seat on the Board of SEEDS of Healing, Inc. They were so welcoming, and so supportive of my laying to rest with my father through the holiday season. I think I’m going to stick with them until they drag me out the proverbial door [because] the love is strong with this ASO.

I am currently working on putting together a Sensitivity Training course for non-indigenous people to come in and provide STI testing [for indigenous people] for STIs, focusing on HIV and hep C. Hopefully our target audience gets tested in a very respectful way to the tribes’ heritage, showing no offense but just to get them tested. And also in this way get indigenous people on the map with some of this data people have collected.

What do you mean by “get indigenous people on the map”?
I was referring to a piece of the pie, the pie graphs we always see. Natives usually have a sliver of that graph because we as tribes do not send our information properly in order to be counted in those graphs. The state usually does not have complete data from tribes for reasons unknown, other than mistrust of the government.

I do know our Indian Health Service is on top of their game now, sending in the information in order for the indigenous graph, with full data being used in studies. The population will be fully represented; that was what I meant be getting a bigger slice of that “pie.”

When you have traveled to your state and the nation’s capital, what are the top three HIV healthcare issues or needs in North Carolina that you highlight?
I have traveled to D.C. with AIDSWatch to discuss healthcare that is needed, such as extra funding, Medicaid expansion, housing, ADAP, which is now called HMAP [HIV Medication Assistance Program, in North Carolina and some other states], and harm reduction issues. Basically more funding. I think we were awarded more funding for research, so a little chatting up these representatives and senators really helps.

Anything you would like to add about your advocacy?
I am usually doing something in my advocacy, such as total involvement in my community club and their activities, even having several outreach testings at the building.

I’m willing to speak on panels since we are into the digital age hard and heavy now, Zoom everything; I have done speaking engagements via Zoom this past World AIDS Day.

My immediate family always does a food drive through November so we can deliver to Loving Food Resources for homebound clients living with HIV. My friend Revelle Edwards delivers on Saturdays for this wonderful [client], whereas I have to travel an hour to get to Asheville. It’s been a project of ours since I was diagnosed.

I live, breathe, and survive on my advocacy work; it has saved [me from] just sitting around, wasting away this way. I will volunteer for almost anything that I can do in order to see things change; it is just in my nature and something that I flourish at.

Nothing really stops my advocacy completely. I am always helping someone out with finding them a place to stay out of the wintry nights, food for some that haven’t eaten in days, taking food to our elders of the tribe and people who are in quarantine. Not a day goes by that I am not doing anything advocacy-related. COVID touched my family hard but not hard enough to make me stop doing this work which fills my heart. If I help at least one person, then I have done my job of making a difference in this world.

It’s not about the monies; it’s about the advocacy in my works. I have worked hard enough that I don’t need an introduction most of the time. Advocacy gives me a purpose in life and to give back for me being able to obtain a life. Always give back to our creator, Mother Earth.

Chael Needle reviewed Billy Porter’s memoir, Unprotected, for the January issue.