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Author Topic: Who qualifies as a long-term survivor  (Read 1237 times)

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Offline Jim

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Who qualifies as a long-term survivor
« on: January 21, 2025, 03:58:03 pm »
Its a long article but below is a part of it.


What’s in a Name?
The debate over who qualifies as a long-term survivor is in the spotlight.

January 6, 2025 • By Victoria Noe, article in full: https://www.poz.com/article/name

Quote
In 2015, I learned that long-term survivor Jeff Berry was forming The Reunion Project to address the needs of long-term survivors. A lot of my friends and women I was writing about, particularly in my book Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community, are HIV-positive long-term survivors, so I asked whether I could attend the group’s first gathering and observe. He said I was welcome—not to observe but to participate.

I argued that I’m not living with HIV or AIDS, so I’m not a long-term survivor. But he insisted that I was. Of the early days of the epidemic, he said: “You were there.”

It took me years to embrace Berry’s definition, though I can’t say I’m comfortable with it. I’m an ally, a title I wear proudly. A straight, cisgender woman who is HIV negative. I’m just not sure I have the right to consider myself a long-term survivor.

The conversations on this topic ramped up as I worked on my book. One of the women I reference in it, Terri Wilder, told me something I saw in myself and others: “We are all damaged.”

But what are we? And does it matter how we identify?

In his September 2024 “Who ‘counts’ as a long-term HIV survivor?” essay on the San Francisco AIDS Foundation (SFAF) website, long-term survivor Hank Trout enumerates various definitions. For the first time, Trout notes, the federal government this year defined some key populations through the HIV/AIDS Bureau of the Health Resources and Services Administration to identify Ryan White HIV/AIDS Program recipients:

Older adults are people with HIV ages 50 and older.
Long-term survivors are adults who acquired HIV prior to the availability of antiretroviral treatment.
Lifetime survivors are adults who acquired HIV at birth or as young children.

The Ryan White Program’s mission demands that its definitions include only those living with HIV. At the same time, it makes a clear distinction between people who have lived with the virus for decades and those who have acquired HIV more recently. But for programming at SFAF, the nonprofit considers anyone who lived through the height of the AIDS epidemic a long-term survivor. SFAF recognizes that HIV-negative long-term survivors experienced the same loss and grief as those living with HIV.

Recently, I again discussed this topic with Jeff Berry and was surprised to learn that our 2015 conversation had partially sparked his decision to include people like me in the long-term survivor definition. But the question remained: Do we deserve to be included? I looked to the military community, oddly enough, for guidance.

My father and his older brother both served in the Navy in the 1940s. My uncle was in Normandy for D-Day operations; my father signed up several months after V-J Day and never left the coast of California. Normandy saw intense combat; California saw none. The federal government classified them both as World War II veterans. They enlisted, underwent basic training, gave up their lives at home and served their country. Their service ribbons, like their experiences, were not the same. But as far as the government is concerned, they were both WWII veterans, deserving of all the perks of that title.

It’s technically true. But is it fair?

Trauma and grief are all too real for those who are HIV negative. Psychotherapy was not an option for most people in the 1980s and early ’90s. Those of us who were not living with the virus, often straight, could not find people outside the HIV or LGBTQ communities sympathetic to our experience. Subjects were changed; no words of support were offered. We kept our trauma to ourselves, only to have it present in ways that often made no sense.

Long-term survivor support groups, like those held at GMHC, do not include us, and I don’t disagree with that. But we need our own “I was there too” groups. Maybe we got lucky; maybe we weren’t truly at risk. But as Jeff insisted, we were there. And that experience has shaped our lives.

Back to a name for us. I threw out a couple of suggestions to the people who responded to my inquiry. For those uncomfortable being called a long-term survivor, “witness” was deemed too passive. “Ally” was a possibility. Maybe “long-term survivor ally”? That’s a mouthful.

Part of me wants to insist that people like me don’t need a name or title. We know all too well what we endured. We’re not looking for awards or applause. But it would be nice to be acknowledged.
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Bluesky

Offline leatherman

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Re: Who qualifies as a long-term survivor
« Reply #1 on: January 21, 2025, 08:02:15 pm »
ugh. not this again. ::) Just like I did years ago in the discussions here that led to our definitions of "pre-HAART long term survivors" and "long term survivors", I have some opinions about this.  ;) :D

Quote
And does it matter how we identify?
Of course it matters how we identify. One group of people are afflicted with a terminal disease and the other group doesn't have this health issue. This is really kind of a stupid and insensitive question, especially if you take it out of the HIV-context. I've had several close friends and family who have died of cancer....and that doesn't make me a cancer survivor or a "cancer-negative long timer".

Quote
This is not a trauma competition between long-term survivors living with HIV and those who are not.
. . .
SFAF recognizes that HIV-negative long-term survivors experienced the same loss and grief as those living with HIV.
and there, that's the attitude of people who don't have HIV trying to make it a competition.

While we may have all experienced the same loss and grief, people who aren't living with the HIV virus didn't have the effects of the disease, didn't have the side effects of the meds, weren't hospitalized with life threatening illnesses, didn't have to deal with the stigma of being positive, and didn't have to deal with the very real possibility of their own impending death - not to mention losing family, friends, jobs, housing, partners, health, and the abilities to see, to walk, or to take care of themselves.

I'm sorry but living with HIV is a 24-7-356 issue. We never go anywhere not knowing that we are HIV+. Every other nurse, doctor, family member, caregiver, ally, etc. has gone home every night without the dread, stigma, and bad health that we as HIV+ persons never get to escape.

Don't mistake what I'm saying here. I certainly appreciate, and all thanks go out to, these allies who advocated for and/or have cared for people living with HIV. However, if we're going to go around labeling people who don't have a disease as a "survivor", then I've survived Alzheimer's, prostrate cancer, diabetes, heart attack and stroke - just to name a few of the medical issues that have killed family members and friends whom I helped while they were ill. and that's a bit nonsensical.

Quote
HIV-negative long timer
A meaningless designation. But if you need a "trophy" too, this term is ok.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim

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Re: Who qualifies as a long-term survivor
« Reply #2 on: January 23, 2025, 02:44:30 am »
Quote
I've had several close friends and family who have died of cancer....and that doesn't make me a cancer survivor or a "cancer-negative long timer".

I know it's not funny but that made me laugh.

What jumped to my mind whilst reading the article was those people I've met or had here pretending to be living with HIV. (They always get caught out in the end) It always surprised me as cancer normally is the go-to for those people.

Nowadays, mental health is getting some attention. This is a good thing, more is needed, but it also means we get fakers. I suppose once mental health challenges become more widely understood, we will have to deal with family, friends, neighbours, caregivers, the guy at Starbucks who served me coffee once or the traumatised dog from across the road who want to encroach on support sessions, terminology, etc.

Don't get me wrong, they might need support for their trauma, issues, survivor guilt etc and that's fine, understandable and perfectly acceptable, but there is no need to start a competition with or to encroach on those living with these health issues.

Quote
The debate over who qualifies as a long-term survivor is in the spotlight.

I don't think it is, to me, it seems the writer has some need for it to be.

Quote
My father and his older brother both served in the Navy in the 1940s. My uncle was in Normandy for D-Day operations; my father signed up several months after V-J Day and never left the coast of California. Normandy saw intense combat; California saw none. The federal government classified them both as World War II veterans. They enlisted, underwent basic training, gave up their lives at home and served their country. Their service ribbons, like their experiences, were not the same. But as far as the government is concerned, they were both WWII veterans, deserving of all the perks of that title.

It’s technically true. But is it fair?

Grasping at straws with this comparison, it's terrible, and they answer the question themselves.

Those living with HIV are all "PLHIV" but our experiences, in what era of the global pandemic diagnosed, disabilities & trauma, etc, etc might be different.

https://www.poz.com/article/name/comments
I thought some of the replies to the article were interesting, this one is my favourite:

Quote
Michael

I found out in 1985, at 38, that I am HIV+, and by 1995 I almost died from AIDS but was fortunately placed in the final trials of an experimental protease inhibitor. I had to have both hips replaced by 50, spent years being severely anemic needing multiple blood transfusions, years on procrit self injections, having to go on disability at 48, and experiencing all of the side effects, facial wasting, thinning bones and weight loss. Don't co-op my Long Term Survivor situation.

January 14, 2025 • Washington, DC

« Last Edit: January 23, 2025, 03:41:13 am by Jim »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Bluesky

Offline Tonny2

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Re: Who qualifies as a long-term survivor
« Reply #3 on: February 07, 2025, 05:22:27 pm »



                ojo.             Hello everyone!… Long time survivor maybe my mother who has been fighting HIV with me since the beginning, seeing me suffering, being with me in the hospital, seeing me, shivering, and embracing me to try to stop the shivering, trembling that I was feeling, even that I was covered with lots of blankets, when I was getting home care, and I told the nurse that I couldn’t breathe when I was getting I’VE treatment so she went downstairs and told my mom that I was dying, when my mother was healing my vasculitis wounds, when she was wearing in the waiting room at the hospital when I was having my stem put in wish he took forever because I was just as a guinea pig for a bunch of students, cardiologist, and my mother desperate because nobody would come out to say anything to her, and she be by herself in the waiting room. I can keep going on and on, so I think that my mother to serves to be called a long time survivor too… Just a thought… Hugs


Ps. i’m sorry for my typos.

 


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