What Does This Worse-Than-Normal Flu Season Mean for PLHIV?

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Sad woman with tissue and medicines lying on bedI found myself unable to sleep the other night because I was so worried about this year’s severe flu, and if I, a person living with HIV (PLHIV), am more susceptible to acquiring it. The stress of outbreaks is already heightened given the recently increased rates of Hep A. My paranoia isn’t unfounded; after all, HIV is a virus that weakens the immune system. And most of us Positive folks have received a stern warning from a doctor or nurse regarding the vulnerabilities of our weakened immune systems. In response to my concern, I looked into why this year’s flu is so bad and if PLHIV are more susceptible to flu in any given year.

Thankfully, the Washington Post read my mind and reported today on this flu season and why it is the most widespread (see map below) on record. The Post’s article explains that more than 8,900 people have been hospitalized since Oct. 1, the beginning of the flu season, and has lead to a higher than normal number of deaths of children.

The Center for Disease Control and Prevention (CDC) further explains that part of the problem this year is that this strain, H3N2, is one of the “nastiest” to confront our modern population. It is good at working around our immune systems’ defenses and current vaccinations are less effective at blocking it. They also state that the season was predicted to peak the first week of January, but rates have continued to rise. So we, as a general population, are up against a powerful influenza virus without knowing when it will end.

But what about us Positive folks? Are we even more at risk of catching this year’s scary flu? I read a December 2015 interview with Christina Schofield, M.D., from The Body Pro, a go-to site for many HIV health professionals. Dr. Schofield says, “There’s probably a little bit of physician bias, and a bit more cautious treatment toward patients that are HIV positive, despite the fact that our patient population is a very healthy HIV-positive population.” She continues, “I would say that, just because somebody’s got HIV doesn’t mean they’re going to have more severe disease.”

But us PLHIV know that not all of our HIV experiences are the same. If you are one who has an immune system already damaged by HIV, then your doctor may suggest flu-fighting medications sooner than they would to someone who was able to fight against their HIV earlier on.

Doctor giving patient a shot

With that said, it remains important to take steps to protect yourself against this year’s flu, just as your HIV-negative friends and family ought to do. The CDC continues to recommend a flu shot even though it has been less effective this year. They recommend it is because states where H3N2 has been prominent have also seen high rates of more common strains against which the current flu shot is more effective. They caution that there is still a long time to go in this flu season and, like stated above, it is very difficult to predict when it will end.

Beside the flu shot, there are many ways to protect yourself and we hear them every year: wash your hands with soap for at least 20 seconds; cover your mouth and nose when sneezing and dispose of tissues right away; avoid touching your nose, eyes, and mouth; and avoid contact with sick people. I’ve also seen it suggested that you keep your toothbrush away from others’, clean surfaces with anti-bacterial products, and frequently launder your bedding.

A note on adherence: It can be difficult to maintain your HIV-medication regimen when you are sick with the flu or otherwise. Heck, it can be hard to remain adherent even when you feel great. Remember: it’s just as important to take your antiretroviral therapy when you are sick as when you are not.

HIV Doesn’t Celebrate Holidays

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By: Jonathon Arntson

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No matter how much I teach and preach about HIV and taking control of it instead of letting it control you, I still have my own ongoing struggles. One of them is with adherence. It’s not because I question the medications or their importance. It’s because I have a tendency to let life get away from me. This shows up in a deeper depression, heavier drinking, lower funds, and less fresh, stable eating. I pamper myself with gifts, food, and décor. I also live across the state from my family and getting back to visit during the holidays can take a large bite of my wallet.

Sometimes, it gets really real like this week when I cancelled an infectious disease appointment because I wasn’t sure if I would have enough for the copay. I recently rented a car as an indulgence to visit family for Thanksgiving, but unfortunately I had to do the same the following week for a funeral in the same city across state. While giving me better options as far as schedule, this unexpectedly set back my wallet, and on top of that, I need to reschedule my appointment.

I’m not upset about not having money; I am upset about losing control over my treatment. I am undetectable, but I cannot continue proclaim so if I do not have the labs to prove it. My last labs are from July of 2017. Now I am at the mercy of Henry Ford’s appointment openings and running the risk of getting off my ID-appt-every-six months schedule. At least I have medication refills to last another couple months. I think. But I do not wish to make that yet another thing to have to handle and remember. Once those things start adding up, I tend to fail on all accounts. It’s happened before.

For more HIV and the holidays reads, check out Being Positive and Beating the Holiday Blues or this reminder from 1992 of how far we’ve come: Holidays and the Bad Tidings of H.I.V.

So, how could I have handled this better? For one, I could have looked before this past weekend to see when my appt was scheduled to take place. This would have reminded me to set aside the copay. Instead, I squandered it on a rental car (and Starbucks, to be honest) when I very well could have saved with Greyhound (and… Speedway?).

Perhaps that would have worked, but perhaps another angle to consider is the mental health benefit I had by renting a car. I used Turo, a site that connects you to vehicles listed by their owners. I had a 2016 Chrysler 200c. It was a sweet ride, and since I rely on bus and Uber here in Detroit, it felt awesome to speed down the freeway with music blasting. It was an expensive feeling, but I did a lot of thinking along the way and had numerous moments of clarity re: life.

Either way, I packed my travel pill case with a few Genvoya even though I knew I’d only need one. I managed to maintain my eating times so that I could take my medication at 7pm without suffering an upset stomach.

When I was home, I answered my family’s questions like, “How are you doing with… everything?” Y’know, everything being the menacing little virus that’s suppressed into some dark corner of my body (apparently the stomach and lymph node areas). Those moments make me yearn for the days when I could handle and sustain a stronger buzz. Now I have to face reality as it happens. But it’s all in the name of remaining adherent. Undetectable. Untransmittable.

Since my tolerance is diminished, I am also working to lessen the amount of alcohol I consume. I find this is connected to my medication–this has affected my adherence in the past. I take my medication between 7pm and 9pm. This is so I will have eaten dinner because my meds hurt my stomach if it is empty. However, if I drink around the same time as, or even hours after, taking my meds, I will certainly feel queasy and uneasy. Many times I wake up the next morning feeling like back in the day when I could have more than a bottle of wine and be okay the next day. But again, it’s reality-facing time and all that.

While we get to celebrate the holidays and hopefully have some time off with friends and family, we positive folks know the virus is always there waiting for an opportunity. As I move into Part 2 of the holidays, I seek to do a better job preparing for financial hiccups, upset stomachs, and several days of being away from my home without a maintained buzz. But hey! There are many more ways to make it through and even enjoy the time.

Enjoy your holidays!

Genvoya on ceramic tree

From Day One to Today: Becoming a PLHIV

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 By: Jonathon Arntson

Hello there. I’m Jonathon. I work at UNIFIED –  HIV Health and Beyond as the Health Education Coordinator. Three plus years ago I became HIV+. Since then I’ve experienced my ups and downs, but I keep myself getting through it with support from friends and family, helping others where I can, and maintaining a sense of humor no matter what. One way in which I am doing that is to share my experiences (adventures?) as a person living with HIV (PLHIV) who also works in the field. You can look forward to me sharing those with you a couple times a month. It’s my hope that my writings will prompt us to engage in progressive discussions about the state of HIV today. I also hope that anyone reading will be inspired to share their own stories. I shared my first day story on thebody.com. You can view it here and you will see snippets peppered into my ongoing posts. 

After I tested positive, I received the “first day” welcome kit of a blood draw, pamphlets, referrals, and you-must-use-condoms-now finger-waggings . Then, I arrived home to begin coping. I felt like I was beginning the same transition you witness in old vampire and werewolf films.

I noticed little changes here and there. After a while, the changes felt deeper like every bug bite or blood cell had mutated into weird little monsters. After a while, I didn’t even realize I had a fever until it began dissipating. I fell asleep and woke up a few hours later. But instead of waking up with powers or sharper teeth or fur all over, I felt exactly the same. And the fever had been a result of emotions. My blood felt the same inside me, and I would soon learn it looks the same. I was beginning the (still ongoing) grieving process.

Although I was still reeling from the werewolf episode, the day after my confirmatory result was also my first day back at work. At the time, I was working at a housewares store–the brand at which I had worked for five intermittent years. When I started that night’s shift, I’d mostly forgotten about my transition into a mutant. As happened too often at this job, I cut my finger on something. Getting cut is inevitable at this home store. Between glass, cardboard, splintered wood, and unloading trucks, getting cut is inevitable at this homestore; I endured hands covered in bandages on the weekly. I did not see it coming but this first day as a new creature gave me a crash-course in accepting myself as-is.

As soon as I cut my finger on a broken vase that a customer left sitting on a shelf, I was transported to a Tarantino film.

Blood sprayed from my hand, and then from my fingertips. Each blink changed my surroundings between neon colors like I was in an early iPod commercial-turned-horror film. I rushed to the restroom, locked myself in, grabbed a wad of paper towel, and crouched into a vertical version of the fetal position. I stayed in the restroom for half an hour as I worried about what I should do. I knew I needed to rinse off my hand but I was afraid to get blood on the faucet handles.

I finally overcame my dread and turned on the water. Instead of sticking my now mostly dried, bloody hand into the water, I plunged my face into the cascade and washed away the irrationality. I cleaned my hands, cleaned the minimal blood off the sink, and left the restroom to dress the wound as though nothing was out of the ordinary. To this day, I still have a small panicked feeling when I see my blood. This feeling diminishes the more I learn about HIV and how being undetectable equals untransmittable.

Speaking of undetectable, I will be sharing many posts grappling with the drama and trauma of being a patient and a case worker/educator.

Months after testing reactive, I volunteered at UNIFIED (formerly AIDS Partnership Michigan). I didn’t know how to talk about HIV or what I was going through. It was easier to say I was “fine” and gulp than to own up to my not knowing what the hell to do or say.

But I showed up, answered calls on the Michigan HIV/STD Hotline (800-872-2437), and covered the front desk. My time volunteering allowed me to hone my communication skills while building confidence in the facts surrounding HIV and how I engaged with them.

I then gained knowledge and confidence working on and off with CARES of SW Michigan and Mr. Friendly to co-facilitate weekend camps for positive men. We learned about disclosure, healthy relationships, and the ongoing science behind HIV. This involvement put me right in the middle of being a person with HIV as well as a counselor for my peers.

I spent my first year employed with UNIFIED as a Linkage to Care Specialist. I worked with newly diagnosed individuals, those who had fallen out of care, and those who had recently relocated to Metro-Detroit. I went through Linkage to Care as a client and when I had the opportunity to switch sides and become the specialist, I was anxious and excited. I had never had a “real job”  before. Taking that opportunity lead me to an even better one, and two months ago I became the Health Education Coordinator at UNIFIED. This position has me in charge of support and education groups, building and maintaining partnerships with peer AIDS service organizations (ASOs), medical clinics, and community agencies offering services to address needs well beyond HIV care.

Beside working at UNIFIED, I participate in panels and discussions as a PLHIV, work on the draft of an autobiography, and write letters to my legislators imploring them to support drastic augmentation to the Michigan HIV Disclosure Law. Lastly, I am working on a website that will offer a space for PLHIV and their loved ones to share their stories. This project has many logistics and barriers to deal with and I am moving very slowly. If you are inclined to help, I would never decline.

Thank you for reading and I look forward to offering you more insights and anecdotes about how I got to being more than just “fine.” Whew. It was really nice to write about myself without it being on a dating app.

Love, Jonathon

social media:

Facebook: jonathon.arntson

Instagram: @themanwiththemichigantattoo

Twitter: @monkeyboydet

Tobacco Reduction – What’s In A Quit Kit?

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By: Kayla Gamino (UNIFIED Tobacco Treatment Specialist)

An ample part of UNIFIED’s tobacco reduction program includes creating quit kits for clients.  During the initial assessment, we bring out the quit kit while discussing possible quit dates.  Each client accessing tobacco reduction services receives 1 quit kit for their time working with the tobacco treatment specialist.  Each quit kit includes: a journal, pens, candy/gum, educational tools, and fidget toys.

Journal- The journal is an especially important piece of the quit kit.  The journal is a good tool to help keep track of a person’s smoking habits prior to their quit date.  Many clients use it to write down when they have cravings, what they are doing when they have cravings, and how they are feeling when they have a craving.  This will help the tobacco treatment specialist and client to better come up with coping mechanisms and a quit plan together for when the client experiences cravings.  For example, if Mike records that he has a craving every time he is feeling bored then coming up with things for Mike to do while he is bored can help combat cravings.

Originally posted by gerimagsakay

Pens- The pens are good for when the client needs to journal.  We put 2-3 different colored pens in each quit kit to make it easier for the client to be able to journal. Pens can also act as a fidget toy.

Candy/Gum-  Each quit kit comes with a variety of candy.  We use Twizzlers, Life Savers, and mints normally.  The Twizzlers can help with the hand to mouth habit of smoking.  It is a similar shape to a cigarette.  The Life Savers, mints, and gum are good at combating the oral fixation that often comes with smokers.

Originally posted by fadedmapdots

Educational Tools-  In each quit kit, we put a pamphlet for the Michigan Tobacco Quit Line.  In the pamphlet, it gives little facts on how smoking affects the body as well as the number to the Quit Line for clients to utilize.  We also include a UNIFIED Tobacco Services palm card that has contact information and HIV and Tobacco use facts.  As an added bonus, we include the Michigan HIV/STD Hotline number.

Fidget Toys-  Each quit kit includes rubber bands that are used by switching wrists when a craving occurs.  It helps to keep the hands and mind busy.  Additionally, each client gets to choose another fidget toy.  We have two different options.  One is a bike chain fidget toy that is small enough to fit in a pants pocket.  The other is a Bendeez toy that can be molded into different shapes.  Both are used to help combat boredom and keep the hands and mind busy.

Originally posted by cracked

All of these items have gotten positive feedback from current tobacco clients.  If you are a current tobacco user and you think that a quit kit would be beneficial to your quit/reduction attempt, please contact UNIFIED- HIV Health and Beyond to meet with a Tobacco Treatment Specialist!

Introduction to UNIFIED’s Tobacco Reduction Program

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By: Kayla Gamino (UNIFIED Tobacco Treatment Specialist)

A session with the tobacco treatment specialists is different for everybody.  We meet you wherever you’re at and will continue to be there for you every step of the way.  It all starts with a referral from your case manager.  At each visit, they will ask about your tobacco use and assess your readiness to quit.  If you both decide that you are a good candidate for the tobacco program, the case manager will fill out a referral form with you and give it to the tobacco treatment specialists (TTS).

So how is your readiness to quit determined?  Through The FIVE A’s; ask, advise, assess, assist, and arrange.

  • Ask- Your case manager is required to ask every client about their tobacco use at each visit and record it in our records.
  • Advise-  If the client answered that they were a tobacco user, then the case manager will advise them to quit their tobacco use and discuss the benefits of doing so.
  • Assess-  Next, the case manager will assess the clients willingness and readiness to make a quit attempt.  If the client is interested in talking to the TTS about tobacco reduction, the case manager will then make the referral to the tobacco treatment specialist.  In some cases the case manager will refer the client, with the client’s consent, to the TTS before they are considered “ready” in order to get the client thinking about quitting and to help establish the relationship between the client and the tobacco treatment specialist.
  • Assist- At this point, the case manager and the tobacco treatment specialist have touched base and the client is now being assisted by completing sessions with the TTS.  During the sessions, the client and TTS will discuss reduction strategies and possible nicotine replacement therapy options.  These sessions can go many ways depending on the clients needs.  Some clients need to talk about outside sources that are affecting their tobacco use, while others simply want information on tobacco and health.
  • Arrange-  The TTS will arrange follow-ups with the client.  Depending on the clients stage of change and the client’s schedule, the TTS will likely meet weekly or biweekly with the client.  These follow-ups can be by phone or in person.  In some instances, the TTS will also meet the client at their home or a local business.  This is the point in the treatment where the TTS tries to meet the client wherever is easiest for them in order to help make the client more successful in their quit attempt.
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Originally posted by firelordasami

How we assess a client’s stage of change:
The Transtheoretical Model

The transtheoretical model is a behavior change model that was specifically created with tobacco cessation in mind.  The 5 stages of change are precontemplation, contemplation, preparation, action, and maintenance.  It is important to know that the stages of change are not linear (that they don’t go in a single straight order).  Someone can go from being in action to contemplation in an instance.

  • Precontemplation- the client is not ready to quit or is not even considered quitting.
  • Contemplation- the client is considering quitting in the next 6 months.
  • Preparation- the client is ready to quit within the next 30 days.
  • Action- the client is currently on their quit attempt.
  • Maintenance- the client has successfully quit for 6 months.
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Because the transtheoretical model is not linear, a client can attempt to quit many times before being successful.  It is important to know that the tobacco treatment specialists are aware that not everyone will be successful right off the bat.  The specialists are there to help the client every step of the way in a completely non-judgmental environment.  Whether you’ve been working with them for months and relapse, or you met with them once and decided the program isn’t for you, they will always be there for you when you are ready to talk again.

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Want to learn more about UNIFIED’s tobacco reduction program? Visit us online at http://miunified.org/Get-Help/Services/Tobacco-Reduction-Services for more information.

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HIV IS NOT A CRIME – Michigan Lobby Day

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received_10153359466535938 By: Sidney Skipper

Sidney Skipper talks about his experiences at Michigan Lobby Day in Lansing.

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I’m in Lansing, Michigan at the State Capital Building, with officials from the Michigan Coalition for HIV Health and Safety (MCHHS), Kelly Doyle and Todd Heywood.  We’re joined by Teresa Perrin whose son is serving a seven year sentence under Michigan’s HIV Disclosure laws.  We’ve gathered here on this beautiful fall day to speak with State Representatives, Brian Banks, Winnie Brinks and Tom Cochran, about co sponsoring a bill that would amend the 1988 Michigan HIV Disclosure Laws, (MCL 333-5210), to place responsibility on the prosecutor to prove intent to transmit the virus, and that transmission actually occurred.  Right now the law is vague and left to interpretation, it ignores the intent requirement, and while the CDC categorizes spitting and biting as low risk for transmission, persons can still be prosecuted for these actions. Nor does the present legislation take into account that in 2016 an HIV diagnosis is a chronic manageable condition.

Did you know that in Michigan you can be charged with a felony and jailed for 4 years or more for not disclosing your HIV status to a partner?  An HIV diagnosis is no longer a death sentence, and yet men and women in Michigan and around the country are sitting in prison for non disclosure, and in some cases placed on a sex offender list, even if they didn’t transmit the virus to the accuser, even if they used a condom, and even if they’re on medication that lowers the chances of transmitting the virus by up to 96%. Thirty three states have laws that explicitly focus on people living with HIV, the only infection that can become a felony, in spite of the fact that there are other diseases that are transmitted in the same manner, and can also lead to death if left untreated, for example, Hepatitis B.  Iowa and Colorado are the only two states to have amended their laws to reflect the new science of HIV.

The US Department of Justice states, “While HIV specific state criminal laws may be viewed as initially well intentioned and necessary law enforcement tools, the vast majority do not reflect the current state of the science of HIV, and places additional burdens on individuals living with HIV.”   According to the PLHIV Stigma Index Detroit, 88% of respondents don’t trust Michigan courts to give them a fair hearing if they are accused of not disclosing their HIV status to a partner.  62% felt that it’s reasonable not to get an HIV test for fear of prosecution. 46% felt that it was reasonable not to disclose their HIV status for fear of prosecution. And over half of the respondents felt that it was reasonable not to seek care out of fear of prosecution.  Just because someone doesn’t disclose their HIV status doesn’t mean that they want to hurt their partner.  The choking fear of stigma and unjust prosecution is silencing, and it’s stifling our efforts to completely eradicate this disease.

I was diagnosed HIV positive twenty-five years ago, on October 29, 1989, and given a year to live. Since 2000, I’ve been on ART (Antiretroviral Therapy), one pill a day.  The virus is undetectable in my blood, which makes it unlikely that I can pass the virus to a partner during sexual intercourse. I will not deny the anguish that living with HIV causes, and has caused me over the years, but I have never held anyone but myself responsible for me contracting the virus.  As I told Representative Cochran:  To accuse a person of non disclosure, to jail them and ruin their life, while we no longer die from HIV if we’re in treatment with undetectable levels of the virus in our blood, seems to be cruel and unusual punishment to me.

All of the representatives or their aides that we spoke to on this day were gracious and receptive to our recommendations. The new bill that MCHHS crafted does not repeal the disclosure statutes all together.  A key part of the new legislation states, “A person who acts with the specific intent to transmit the HIV infection to another person, and engages in conduct that poses a substantial risk of transmission, and actually causes HIV infection to the other person, is guilty of a crime punishable by not more than 1 year or a fine of not more than $1,000, or both.”  When you take into consideration that HIV is no longer a death sentence, misdemeanor charges, rather than felony charges, are sufficient consequences for an intentional transmission of a treatable, infectious disease. If I might add, intending to infect someone with the Human Immunodeficiency Virus is very rare.

My personal feeling is that the laws should be repealed all together, but during a conference I attended earlier this year, I was told that because of the stigma, the animus surrounding HIV, prosecutors would use other legislation to prosecute offenders with the intent to infect, but with this legislation we are the gatekeepers.  UNIFIED: HIV Health and Beyond joins The White House National HIV/AIDS Strategy to End HIV, to support this bill, because it aligns with the  current science, and because we are dedicated to advancing prevention, providing access to healthcare, community research and above all, advocacy that we feel advances the dignity of people living with HIV.

My most memorable meeting of the day was at the Capital offices of the primary sponsor of the bill, the Honorable Jon Hoadley of Kalamazoo, Michigan.  Representative Hoadley is a formidable champion dedicated to modernizing the Michigan HIV Disclosure laws. He would like to have at least thirteen co sponsors for the legislation before he introduces it.  We’re already halfway there, thanks to the hard work of past advocates, and today we may have added four more. The MCHHS has another lobby day scheduled for November 11, 2016, and we need all of the advocates that we can muster to stand with us.  This is a call to action for those interested in reforming our outmoded, unjust HIV Criminalization Laws, to come on out and join us in Lansing, Michigan on November 11, 2016, in the gilded halls of the Michigan State Capital building.  Todd Heywood, the Policy Director for MCHHS encourages us to, “Take responsibility to empower ourselves to protect ourselves and our partner.”  For more information about the next Lobby Day contact Todd at, Todd@MCHHS.info, or call 517-899-6182.

AIDS Survival Syndrome Excerpt from Lust or Love: A Gay Odyssey

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received_10153359466535938By: Sidney Skipper

“Sweating, heart palpitating; suddenly I’m awake, sitting up in bed. “My body, something is happening inside my body.” The spot where I was sleeping is soaked. It’s 4am in the morning. Kenny is laying sound asleep next to me. “Something is happening inside my body.” Thoughts of AIDS rush around my mind: Flu symptoms, night sweats, high risk, enlarged lymph nodes, no cure. My anxiety is replaced with a decision to get tested immediately.

I try to go back to sleep, but when Kenny wakes at 7am I’m still wide awake. “We’ve got to get tested.” Kenny doesn’t know what I’m talking about. I show him the soaked spot on my pillow, and explain this dread fear that I have. “I may have AIDS and I need to know.” Now, Kenney is the type of man who feels that as long as he isn’t sick, he doesn’t want to know, or need to know, whether anything’s wrong. It’s important to me so after a couple of days of discussion he agrees to go with me to get tested for HIV.

It’s early October, 1989, the leaves on the trees are emblazoned with colors ranging from lush browns to bright yellow, vibrant red and orange. The air is crisp and clear. On the way to Henry Ford Hospital, where HIV/AIDS anonymous testing is done, I look out of the car window at natures kaleidoscope of color as if I’m looking at it for the last time.

When we arrive at the hospital we’re directed to an isolated wing where one person is drawing blood and counseling. Very little is known about HIV at the time. We’re told that we would have the results of our blood test in two weeks. “Two weeks.” Needless to say those two weeks are filled with visible anxiety for me. Kenny on the other hand appears apathetic. I call Kenny’s apathy invisible anxiety.

The phone is ringing. It’s 9am October 27, 1989. “Hello.” “Hello, Mr. Skipper, this is Bill Townsend. We need for you and your partner to come in to the clinic to receive your test results.” It’s the counselor from the testing center at Henry Ford Hospital. “Can’t you give them to me over the phone?” “No,” is the response, “Against policy.” I knew that. I don’t know why I asked. “OK, we’re on our way.”

The Palmer Park area off of Woodward Ave. and six mile road in Detroit was once a predominantly Jewish neighborhood. Now it’s a predominantly gay neighborhood. Most of the gay black males and females in Detroit pass through Palmer Park at some time in their life. The rent for apartments and housing surrounding the park range from moderate to very expensive accommodating tastes for the simple as well as the sublime. The park is about six miles in diameter, with a wooded area, a pond and an old log cabin with some historical merit. Summer art fairs are held there, the Hotter Than July Gay Pride picnic is also held there. There are areas for family picnics, a playground, golf course, tennis courts and a swimming pool for the children. The parks diametrically round landscaping makes it ideal for inner city joggers. Its large parking lots also make it a superb cruising spot for straight and gay cuties eager to show off their sexy bodies, and their array of wonderful new cars that only Detroit can produce.

After leaving the appointment at the Henry Ford Hospital clinic, Kenny and I drive to Palmer Park and park in one of the lots under the canopy of the magnificent autumn sky. We finish of a fifth of rum and coca-cola, and smoke a joint. Our HIV test results came back positive. We don’t discuss how we got the virus or who infected us. We don’t accuse one another because we have always practiced safe sex. We must have had the virus when we met. At this point where we got the virus from is not important. What to do next is. Although the doctor told us that we would be dead in a year, I’m not depressed. I’m a child of the sixties, the generation that questioned the inherent value of everything, and believed that we could achieve anything. “Pass the joint Kenny.”

That was twenty-five years ago. I watched and waited for death while my friends and lovers passed away before my very eyes. Kenny passed away in 2005. I woke up one day and realized that I had survived what they now call the “AIDS Generation,” those of us who contracted HIV over twenty years ago when it was a death sentence. We helped to build the successes that the newly infected now enjoy through years of advocacy and caring. We are the last of our generation. We hold all of its memory, all of its history. In the throes of a plague no one thought about those of us who would survive. How do you deal with life after expecting to die?

The national strategy to tackle HIV/AIDS now is focused on the youth and prevention, as it should be. The needs of Long Term Survivors are somewhat different and are only beginning to be addressed. Many HIV long term survivors suffer from what is known as AIDS Survival Syndrome (ASS), a form of PTSD. In 2012 Tez Anderson and Matt Sharp launched a grass roots community group for people who survived the early years of the AIDS epidemic, called Let’s Kick ASS. ASS is defined by chronic anxiety, isolation, survivor guilt, depression, substance abuse, insomnia, sporadic anger, sexual risks and a lack of future orientation. Those without partners often have less income making them vulnerable to financial hardship. Some are too emotionally damaged to form new relationships or friendships for fear of being abandoned. Given a year to live some liquidated their assets, signing away their financial future. Between 2009 and 2012 suicide accounted for 4% of all deaths among people living with HIV in San Francisco, far above the national average of 1.5%. Like in the early days of the AIDS epidemic when we rallied to care for each other and ourselves, we must rally once again to understand and overcome ASS.

UNIFIED – HIV Health and Beyond salutes our long term survivors. Since 1983 UNIFIED has been a port in the storm and trusted ally for people living with HIV. UNIFIED remains dedicated to servicing the needs of those infected and affected by HIV by advancing prevention, access to health care, community research and advocacy. After Kenny died I reached out to AIDS Partnership Michigan, now UNIFIED – HIV Health and Beyond. They helped to educate myself and my family about the realities of HIV. For more information about ASS and the Lets KICK ASS campaign visit their website at http://letskickass.org/UNIFIED is available to assist you with any issues you may have. Please feel free to contact us, 313-446-9800. www.miunified.org  You are not alone.

Sidney Skipper

PLHIV Stigma Index Leadership Council member

Author, Motivational Speaker