When Pozzies Gather

 

09.13.2017

A few nights ago, we had the pleasure of meeting a few members of the positive community in Cebu.  It was a  fun night. We were laughing and @cebur14m was particularly funny.  Stories were shared.  Laughter filled the hallway where we were seated.

cebupz

me, standing at the back (sorry for the icons). Others in the pic: 

 

 

Serious moments were inevitable.   Issues were shared. The lack, or absence, of CD4 for some time now, and viral load.  The death of a someone at the shelter. The condition at the shelter.  Sharing about Philhealth came up. Information about baseline labs were asked.

Then the goddess of fun cast a spell yet again. Jokes flew across the room, er, the table.  It was a fun night.

It was a good support group. A real support talk. With peers. By peers. No resource speaker. No trainer. No hidden agenda.  A talk over coffee not driven by any funding agency. No minutes of the meeting. No documentation.

T’was a nice evening.

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Wil’s Road That Kept Winding

09.13.2017

road

CD4 = 5

You first came to me asking for help, you skipped treatment and wanted to come back for your ARVs.  I referred you to Ed. It took sometime before you eventually did.

CD = 3

You came back and this time, your condition was worse. You were given the basic labs and was found to have CMV, your left eye was going blind.  You were thin.  Very thin.

CMV Bout

You had to process PCSO assistance to secure your CMV meds since they cost a lot, too much even for a middle class citizen.  But you were unable to sustain the efforts of going to the charity office to secure assistance, you were on and off with your valcyte.

Cebu

We eventually decided to bring you to Cebu, where gancyclovir would be more available and where you can be housed temporarily in a shelter, for free.  We raised money for your plane ticket.  It took more than a month before you had your first gancy, and then your succeeding gancy.  But shortage came, and you had to stop.  The plan with your sister was to bring you back to Manila for treatment, again.

Silence

We never heard from your sister.   Until a few days ago when we were in Cebu with a group of pozzies and they mentioned you in passing. We were surprised.  They said you were gone. They said you died.  In disbelief, Ed checked the facebook posts of your sister. And yeah, you’re gone.  You left last June. It’s been three months. You left.

Memories

As with the others, you are now just a memory. “Just”.  It’s sad,  Do people even remember you?  Like when you attended the rooftop (er, a.k.a. penthouse) gathering where I thought you were doing better. Like when you came to Quezon City to get some money for fundoscopy.  Like whenever you would come in to the clinic for your labs, or refills.  Like when you used to work before your body came down with complication.  Do people still remember you?

Questions

I was left with questions:

  • Why was it too difficult to secure PCSO assistance especially for someone with no family to help him out, and who’s physically challenged to go through the queue at 3 in the morning?
  • Was I wrong to send you to Cebu thinking you would get the much needed treatment and attention there?
  • Was I wrong to send you to Cebu having heard that the shelter was depressing and sad for people who lived there?
  • Was I wrong to assume you were doing okay?
  • Do you hate me?

Answers

  1. Your never-ending winding road ended. You’re okay now. Better than ever.
  2. I’m sorry.

 

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Region 3 (Central Luzon) Treatment Facilities – as of June 30, 2017

09.04.2017

For your reference, here are the list of the Central Luzon treatment facilities as of July 05, 2017:   ( IF you need a soft AND CLEAR copy, please email hashcommunityoperations@gmail.com  OR try this file: ART FACILITIES AND PERSONNEL DIRECTORY as of July 5, 2017)

Region 3 ART Faci1Region 3 ART Faci2

For more information you may contact this reliable coordinator from the region:

Mr. Joseph Michael D. Manlutac  / 09321968475 / chd3hivaids@gmail.com

 

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Zamboanga (HIV) Adventure

08/30/2017

August 27, 2017

We got to Zamboanga around 1 in the afternoon and we went on to our hotel.  We did an online booking and we found (the night before) Jardin de Lavina.  It wasn’t a fancy hotel but for 1500ish per room for two night (already),  it’s not bad. The room was in fact big enough for 2-3 people.

This is out first stop and we had to meet community organizations and orient them about screening at the community level.  My immediate problem was that I haven’t heard from the Save the Children coordinator who’s supposed to choreograph the entire Zamboanga trip — meetings and more meetings.   The last time  I heard from him was via email when he was asking for 4 letters so he can give out to the people we’re suppose to meet.  That was August 21st when we sent him the email.

Good thing “Jet“came into the picture (the girl I wrote about the other day)

August 28. 2017

28th was the National Heroes’ Day so we were luck to have met some community members. Again, thanks to Jet.  Also, credit goes out to our friends from Youth Alliance for Filipino Advocates’  Sam who linked us to his colleagues in Zamboanga, and  Association of Positive Nurse Leaders Advocates (AYNLA).

21268182_10212858808492634_539578724_o

The meeting was productive primarily because we had a clearer picture of how the community is in Zamboanga.    We heard about the concerns and the potentials of the city.  So yeah,  t’was a good place to start the 3-city meeting this week.

Well since the coordinator did not coordinate, and we’re leaving in a few hours and we haven’t heard a word from him, we scrambled to looking for contacts and our project manager (Ed) was able to find “Loida” of the Zamboanga City Medical Center (ZCMC) where the treatment hub was.

August 29, 2017

Since Loida confirmed about the meeting around 6-7 in the morning,and we ‘re suppose to be at the airport past 1 in the afternoon,  I thought we were just gonna kill the time in the morning waiting for our departure for Davao in the afternoon. Long story short, I didn’t get the opportunity to join them in the meeting because I slept late working and I was dead asleep til 1030 in the morning.

I woke up to a message from HDES (an organization in Zamboanga) asking if we can meet that morning. Apparently they did not receive the letter we sent the week before.  Since the rest of the team was still out (to ZCMC), I had to beg off as I have yet  to pack my things.

Ed was saying that the hospital was big.  They weren’t able to meet the treatment hub physician because, well, she was out on a medical mission and they never received the letter that Junpicar (the coordinator) asked from us more than a week ago. Some important notes about the treatment hub:

  • All new patients UNDERGO Psychiatric consult; this  is interesting as mental health has never been an auto-baseline protocol in other hubs
  • All new patients have to settle baseline lab costs of around 2,000 pesos, BUT  they can refer you to medical social services (MSS)  and 2000 can go down to 1600. BUT WAIT,  they can further use the CIU (crisis intervention unit) so the patient doesn’t have to pay for anything.
  • CD4 is done onsite.
  • Viral load is sent out (offsite).

I wish I would be able to write more about ZCMC soon. It’s just sad that I wasn’t able to join them that morning.  I wish we can conduct one more meeting there and this time,  have our new found friends from Mujer LGBT coordinate the meeting.

Anyways, I had fun. Somehow.

By the way,  if you ever need Loida of the treatment hub in Zamboanga, she may be contacted through 09177718147.

So there was a point when Ed can’t help logging into his grindr account and someone messaged him about community based HIV screening.  Ending- the guy’s already been endorsed for confirmatory and treatment. Go Ed! LOLs

 

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“JET”

08.28.2017

May 08, 2017

I just got back from a near 10 hour drive from Ilocos.  I had to see you for HIV screening and admittedly, my mind was not up to it.  Exhausted, I dragged my ass and drove to your location. You were already waiting when I got there.  And inside the car, we talked about your history,  your risks, your concerns. You. Your parents both passed away  years ago and you were in Manila alone. Working in a call center in Manila for almost 10 years, you had no one but yourself.  Your aunt’s your only family, but she’s in Zamboanga, some 1300 kilometers south of the Philippines. You have two siblings, the other one you can’t find and has not been in touch for five years. Your other sibling has a kid, also with your Aunt in Zamboanga.

Screening

The time came and we finally did your HIV screening. Reactive.  You were calm.  You didn’t go all crazy on me. You didn’t cry. Your eyes however said everything.  Your sadness was evident.  We went on to Project 7 Social Hygiene where your HIV test was done along with your baseline tests. CD4 was 164.

May 27, 2017

You went back to Zamboanga City.   You messaged me saying you have moved to Zamboanga. You messaged me on Facebook, but we met on Twitter– so yeah, I was clueless who you were.

August 27, 2017

You messaged me asking if I am in town.  I wasn’t quite sure who you were but yeah, I am in town.  We chatted and it took some time before I finally remembered who you were. You transferred treatment to Zamboanga City and you have been doing very well.   Your treatment has been consistent, although you were given anti-depressants by the Psychiatrist due to occasional depressions.    You felt you were stable and that you didn’t need your psych meds anymore.  You joined a transgenders group and has been active in the community.  You disclosed to practically everyone in town and you don’t care what others think about you. Or your status.

You’re good. You’re well. You’re well on your way.

August 28, 2017

Today, you came in early for a meeting for community-based HIV screening.  You were full of life.   You told me so much stories in the little time you spent here in Zamboanga.  You also told me how much you wanted to start helping with the HIV program in the city.

You looked happy.  And I’m glad you are.  You are looking forward to a better tomorrow– good for you.

It felt like you’ve grown so much in the past few months I have not seen you.

You Owe Me

You must have told me three times since yesterday that you owe me your life. You don’t.  You gathered your own shit and faced your fears. And I, in fact, owe you.  You inspired me to keep going. At a time when I always end my days tired, you inspired me to keep moving.

Keep Going

Please. Keep going.

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The New Form A- HIV Testing (and tattoos)

08.19.2017

The Form A of the the Department of Health-Epidemiology Bureau is the form used for/by people who wants to get tested for HIV. Click here to view the new –> Form A_v2017

There are some questions around the new form:

  1. Why is tattoo being asked in the form under risk assessment?
  2. Why does the government say “fill up” instead of fill out?

TATTOOS

form A tattoo

According to CDC,

There are no known cases in the United States of anyone getting HIV this way. However, it is possible to get HIV from a reused or not properly sterilized tattoo or piercing needle or other equipment, or from contaminated ink.

It’s possible to get HIV from tattooing or body piercing if the equipment used for these procedures has someone else’s blood in it or if the ink is shared. The risk of getting HIV this way is very low, but the risk increases when the person doing the procedure is unlicensed, because of the potential for unsanitary practices such as sharing needles or ink. If you get a tattoo or a body piercing, be sure that the person doing the procedure is properly licensed and that they use only new or sterilized needles, ink, and other supplies.

So that’s in the US, of course.  There hasn’t been a formal report around transmission from tattoos/piercings in the country, as far as I know.  The HIV registry does show needle sharing so I don’t quite know if there were cases around alleged tattoo transmissions.  Licensed tattoo artists are really not a thing in the Philippines,  while former Senator Manny Villar did submit a bill around tattooing,  I am quite not sure if it ever passed as a law.

So is it possible to get HIV from Tattooing, according to the article in CDC, yeah.  Low risk, yes.  Never in the US, yeah.  I hope that answers the messages I have been getting lately about the new form A.

So there.

Oops, the fill up-fill out thing? How the hell should I know? LOLS!

 

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A NOTE for @iampozguy

Update as of 8/16 – He’s fine, for now.

—–

08.13.2017

You posted:

https://iampozguy.wordpress.com/2017/08/11/love-letter-2/

A death note.

By the time you read this letter I am gone. I am tired. For more than five years I have struggled with my condition. I tried fighting back but I can no longer bear the pain. I am happy to have been given five years with you all. I am grateful to God for extending my life and giving me a chance to live a full life.

5 years ago, you were lost. You stopped treatment.

On my 5th year, I found you and we went back to your treatment. From CD4 of 4, two days ago we were chatting and you’re on 600.

Two days ago, you were asking about pneumonia vaccine.

Two days ago, I did not hear any cry for help.

A few hours after we chatted, your blog came out. People panicked. I was not aware of your post.

It’s my tenth year.  It’s your 5th.

And I don’t know where you are.

Last night, I was told you were gone.

Everyone’s assuming.

I am hoping.

Where are you?

Please.

 

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The Tough Lady Archer

07.29.2017

First Time

She was 18, she sent me a message asking about her treatment and that she was afraid that her family will find out about her status.  She stopped contacting me for a while and then she came back one day, asking for help for her shingles.

Eyeball

We set up a meeting but she never showed up, a few days later, she messaged me asking about her meds for shingles.  We found a way of getting the meds to her through a volunteer near her school.

Silence

A deafening silence kept her away from treatment. From time to time, she would say hi but it ends there.  No action to seek treatment. Her focus was her school.  She graduated eventually, started to work. But no, treatment is still not her priority.

Fear was her main issue, subconsciously she has prioritized fear over treatment.

You Finally Came Back

She said  she  would finally seek treatment, she went back to RITM but she was asked to pay for your CD4.  I referred you to some free CD4 services. And silence followed.  It wasn’t until a few months after that I found out she never sought the CD4 services I referred to you.

Last week

She was concerned with a recurring cough. Persistent mostly.  She messaged me, but her fear was still there, that her mom doesn’t know.  A few minutes later,  she again messaged me, she told her mom. And everything’s fine.  She asked me to talk to her mom and we talked for an hour over the phone.  Her mom’s a health worker and she understood what her daughter was going through.  Her mom was asking, “Where did I go wrong?” but she said she wouldn’t want her kid to know about her question.  Her mom was mainly concerned with one thing, treatment.

This coming Monday, she and her mother will go to a private clinic for baseline.

And well, I guess this is a start of an entirely new story in the life of a young transwoman.

And I’m happy for her.

 

 

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May 2017, HIV AIDS REGISTRY OF THE PHILIPPINES

07.28.2017

Here’s an overview of the HIV registry reported as of May, 2017.

Notes:

  1. 1,098 new cases reported, the highest ever in the history of HIV case-recording in the country. This averaged 35/cases per day last May.  Note that the numbers would refer to the confirmed cases reported for the month, and since the confirmatory process takes 10 business days (at least), some of the screenings may have been done April, and some May screened reactives would have been confirmed by June.
  2. 140 AIDS cases were noted, more than 10% of the new cases were clinically labelled as AIDS cases. These would be cases with CD4 of less than 200 and/or with the presence of an opportunistic infection.
  3. 8 pregnant women were reported to have been confirmed with HIV. Note that in a recent travel to the region 1 areas, some municipalities do not have HIV testing available, and most pregnant women were never tested, or were never informed about HIV testing.
  4. Region 3 went up to number 3 among the regions, normally occupied by Region 7. NCR retains its top position among the different regions of the country.
  5. In May 2017, 64 adolescents aged 10-19 years were reported.  3 children aged 10 years and below were reported to be HIV positive and were infected through mother-to-child transmission.
  6. Eighty-four OFWs were reported in May 2017, comprising 8% of the total newly diagnosed cases.
  7. In May 2017, there were 15 reported deaths.

Please view the entire report here:  EB_HIV_May-AIDSreg2017.

This reinforces the illustration below recently released by  UNAIDS:

2

If the country continues to push for more awareness and education, we expect to screen more people for HIV.  If more non-“fast track” cities would start with their HIV programs, we hope to reach more people.  On top of the screening is the need to link more people to treatment and care, and RETAIN people in treatment.

It’s a long road.  But we have to start walking (or driving) that long road, or else, we don’t get anywhere.

Talk to us on FACEBOOK  

Chat on TWITTER

Read and ask more about free community-based HIV screening 

 

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Ben’s Fight.

07.27.2017

Tuesday 10PM

I stared at the bus that’s supposed to bring me more than 350 kilometers up north, I was worried. Worried that my ADHD would make me get off the bus half way through the ride. I couldn’t drive since I just came from the same region less than 36 hours ago, and I had no one with me.

But I knew you were waiting. As you have been looking for me last June.

Wednesday 6AM.

7-11.  I forced myself to stop at the store to have some bland hazelnut coffee. I was nervous, afraid – to see you.  I finally had the courage to call one of the yellow tricycles nearby and go to your place.  The ride seemed longer than the 10 hour trip going there from Manila.  The first right turn was a narrow cemented road but when I saw the arc labelling your barangay, I thought you were like 4, 5 houses away since your house number is 8. But I was wrong.  The narrow road went on and on.  The driver turned left to an even narrower road. A dirt road. The first thing I thought of was how the heck was I gonna get out of the place.  A few more minutes, we stopped at a place with a tarp out front. Your face was on the tarp.  I sighed, “I am here”.

Your grandmother greeted me, your mom was seated. Staring at you. Not a single word. She looked at me, extended her hand and lightly squeezed mine. I walked over to you. Your coffin. Pictures of your happy moments were all over the wall.  Pictures that I remembered you by.  I closed my eyes for 1-2-3 seconds and I looked at you.  I almost turned around and shouted, this is not him.

First Meeting.

Year 2014. You were late. I had been waiting for hours and had rendered counseling duty at the RITM satellite clinic in Malate. I cannot forget that day because that day, I had four clients who tested reactive in the clinic, and I had to do consecutive counselings. You were going to give me your PWD application, your I.D. pictures, your confirmatory letter. You finally texted.  I went out, smoked and stood by the door and waited for you, again.  Then from afar, a man around my height, lean, dark was walking towards the clinic.  I puffed and I told myself, “HOT guy”.   I gazed the other way looking for you, waiting for you.  Then from behind, a voice called out, “Dad!!!”.  I turned around, the HOT guy just called me DAD. The hot guy was you. “pfft….!” There goes my fantasy. LOLS.  We chatted, you were speaking Ilocano from time to time. It was a brief chat.  Your big bright smile impressed me, you were light to be with, your smile can readily brighten up anyone.   You had to leave for somewhere and I had to go back in for my counseling duty. Over the next three years, we would keep in touch, meet for coffee from time to time, text—and as always, your smile—Your smile.

Your Brother.

He tapped me from behind as I stared at you in disbelief.  Your last pics on facebook last May were the actual you I met 3 years ago.  Your brother whispered from behind, “kuya…” I turned to him and he was starting to cry.  I asked your brother to go with me outside and talk. And I needed to smoke. A lot.

Tell Me.

There were a million and one questions in my mind.  Your brother told me everything. He answered what I needed to ask.  He told me you only had your ARV for a month and you stopped.  He told me you were depressed with how your networking colleagues have been successful and you weren’t.   He told me how you last visited them during the holy week and the family went swimming, and that you were, as always, perky and “normal”.  He told me that mid-June, you came back and was confined at the nearest treatment hub.  He told me you were looking for me to help the family decide if it were better for you to seek treatment in the province or in Manila.  He told me you decided to go home 3-4 weeks after confinement so you can “rest better”.  He told me that last Monday you were having difficulty breathing, Tuesday you were having difficulty swallowing, Saturday you were gone.  It was one of the longest two hours of my life.  Despite the many “he told me” moments,  there was one question left unanswered – Why didn’t you come to me?

Home.

I got home after a gruesome 12 hour bus trip. My back ached. My head empty. My heart in pain. Still.

Your Fight.

At least four people had told me I had no control over someone’s decision.  That one’s health is one’s personal responsibility.   The thing is YOU are one of my personal responsibilities. And I felt I failed. I failed to ask how your treatment was. All the convos were hellos and work and laughters. I failed.  At least three people said you gave the fight up.  I had to rationalize. No!

You fought your own way.  The way you fought no one can judge.  You fought differently. You chose to fight the way you did and now you are resting.  I may have failed, but you won your fight.  I have to tell myself that you won your battle. In your own way.

Still, I’m proud of you. I am sorry I wasn’t there, I am sorry I was too busy with the programmatic aspects of my work, and I am sorry I wasn’t there. It pains me, deeply, that you have gone away for good.

But your smile—they will always bring me sweetest memories of you.

Thank you for being a part of my life. Ben.

 

 

 

 

 

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