Written and Delivered by Pemphero Mphande at Chancellor College on 1^st December, 2020

Stories of Victory: Lived Experiences of young people facing HIV with a Smile

I could not have thought of a better place to be at today other than Chancellor College. They don’t call this the College God loved the most for no reason. They call it because it truly is. I have always told of my first time stepping here. I was a student from College of Medicine in 2012. I still remember it as if it were yesterday. I felt the uniqueness and aura that this place has. I hope you all value your time here and enjoy it while you can. Being in college is supposed to educate you, shape you into responsible citizens but most of all it is also supposed to be fun.

To that end, I am wishing you here all the best with your education. I had to take opportunity of this to say that because for some reason I am getting a lot of students reaching out for insight and motivation. I always say be creative, resourceful and think outside the box. The world is waiting for your solutions to our common problems. If you can solve some, you will find that there are plenty opportunities for everyone. And sometimes, it takes time to come by a breakthrough; don’t die while you are still living. Always fight to better.

This event almost looks a success. I am happy that we were able to make it happen at this prestigious institution. Let me thank all the students who organized this. It is not easy to pull out such especially where your attention may split between your school needs and others. But it is worth it. You need it as a student; to put yourself in as many networks as possible outside of your school work and to attend such functions because here you get to learn what the classroom can hardly ever teach you. So, thank you all of you here present. On my own behalf, of my entire FACT team and our funders, HIVOS- we don’t take it for granted.

Today is a very special day to me and a lot of people if not everyone. To me it is important because I am an HIV and AIDS Campaigner. I have been so for the past seven years and I love this work. It has brought me great joy at times, it has brought me pain at times and it has brought me tears of joy.

The truth is the HIV pandemic has affected almost everyone. If you, yourself aren’t living with the virus, you know someone who is. It could be your sibling, friend or parent. This is why I believe today on the World AIDS day, it is also important not just to me, those living with HIV, but everyone. So I am wishing you all a happy world AIDS day. The syndrome of diseases, AIDS that comes from the virus is not a good thing but it is a disease like any other and if it has done one thing then it is not to break humanity but bring us closer in solidarity and shared responsibility. This is why I love the UNAIDS theme for this year’s 1^st December: global solidarity, shared responsibility. May we continue to join hands and work together to fight this disease!

I am supposed to give a keynote address today. For you in academics, you obviously know what that means. A keynote is simply meant to set the agenda and the pace for the discussion in an event. I believe this event doesn’t need a keynote. If anything we know what we are dealing with. We are united in fighting HIV and AIDS. Allow me at this juncture, to share with you the global HIV status report.

An Overview of HIV as of 2019;

• 4 million [24.5 million–25.6 million] people were accessing antiretroviral therapy in 2019.
• 0 million [31.6 million–44.5 million] people globally were living with HIV in 2019.
• 7 million [1.2 million–2.2 million] people became newly infected with HIV in 2019.
• 690 000 [500 000–970 000] people died from AIDS-related illnesses in 2019.
• 7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic.
• 7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.

Progress on 90-90-90

• The First 90: By 2020, 90% of people living with HIV know their positive HIV status
  • In 2019, there were 38.0 million [31.6 million–44.5 million] people living with HIV
  • 81% [68–95%] of all people living with HIV knew their HIV status.
• The Second 90: By 2020, 90% of people living with HIV who know their positive HIV status are on Anti-retroviral Therapy
  • As of the end of 2019, 25.4 million [24.5 million–25.6 million] people were accessing antiretroviral therapy, up from 6.4 million [5.9 million–6.4 million] in 2009.
  • Among people who knew their status, 82% [66–97%] were accessing treatment.

 

• The Third 90: By 2020, 90% of people living with HIV on ART have Viral Load Suppression
  • Among people accessing treatment, 88% [71–100%] were virally suppressed

Of all people living with HIV, 81% [68–95%] knew their status, 67% [54–79%] were accessing treatment and 59% [49–69%] were virally suppressed in 2019.

It would be imprudent for me to share these without sharing you the Malawi report. As of 2019, 1.1 million people were living with HIV, 33,000 new infections were recorded and 13,000 died from AIDS related conditions. In 2018, 90% of people living with HIV in Malawi were aware of their status, of whom 87% were on treatment. Of these people, 89% were virally suppressed, meaning the country is very close to reaching the UNAIDS 90-90-90 targets. This equates to 78% of all people living with HIV in Malawi on antiretroviral treatment (ART) and 69% of all people living with HIV virally suppressed. New infections have dramatically declined from 66,000 new infections in 2005, to 38,000 in 2018.

For so long we have been saying that almost 50% of new infections occur in young people but 2018 was different. Just under one-third of all new HIV infections (14,000 out of 38,000) in Malawi in 2018 occurred among young people (aged 15-24). Roughly two-thirds of new infections among young people were among young women (9,900 new infections among young women, compared to 4,200 among young men).

With these numbers, it gives me pleasure to DECLARE TODAY THAT AS A GLOBE AND A COUNTRY WE ARE WINNING THE BATTLE AGAINST HIV AND AIDS. We are winning the battle against the stigma and discrimination that for so long has deprived us of openness and love for each other. We are winning!

Conversations like these are important. The importance of a conversation is not that we can act on it afterwards always, sometimes it is that we can be inspired to act regardless of whether we do so or not. For mankind, conversations are the birth of greatness. Without it, two people or more cannot plan anything. Without it, we wouldn’t be here today, we wouldn’t have aeroplanes. I imagine that the man who built a plane after thinking of it had a conversation with someone. “I want to build a vehicle that can fly.” He may have been laughed at. But today it what it is.

So to my mind comes a conversation I had in 2015. My last outreach trip as president of College of Medicine AIDS Counseling and Training Society took me to Mulanje secondary school with my team on a National AIDS Commission (NAC) funded project. The team had gone there to train some students, counsel, conduct a behavioral change and condom awareness campaign.

While there something truly inspiring happened that changed my look at HIV and AIDS completely. I have shared this story several times but each time I do, it feels new. Today I will share it again because finally I’m taking my work as an HIV and AIDS prevention worker to the next level.

After I had finished my presentation on “safe sex”, a young boy approached me. This was around 15:30 or 16:00. I’m not quite sure about the time except I remember the driver of the school bus had placed tremendous pressure on time. We were late and the school bus we had hire had to be on campus before 16:30.

So as the boy approached me I was hurrying to go board the bus. But the kid said in Chichewa, “I really would love to speak to you for a brief time”. I said “I’m in a hurry, be real quick”.

He needed help because of an issue that had been bothering him starting with “I was so inspired by what you said up there”. He told me that he was born with HIV in 2002 and 13 years later he was on ARVs.

My body took a chill looking at how glorious the child looked, not that HIV positive people shouldn’t look so or that it was my first time meeting one like that. NO. There was just something special about this moment.

As he carried on, tears trickled down his cheeks. He said, the ARV drugs he had been taking were giving him side effects and in particular, “too much anxiety” among others. He began weeping right in front of me. In all my time as an HIV campaigner I had never come so close to the realities of the burden of HIV on humanity.

I offered some advice to this kid but I couldn’t finish because the horn beckoned and someone yelled, “Mphande let’s go!” I panicked as I wrote this kid’s name on a piece of paper while assuring him I will get him some help.

I had so many papers in my hand that I forgot the name and never found that particular paper again. As you would tell that was the end. I regret the way I handled the situation to this very moment because a few weeks later I went there only to learn that he had died. It honestly broke me.

But from that day I vowed, “I will do this work till the day HIV ends”. I’m an HIV campaigner and a very good one. I want to become better at this work every day. When I got out of College a few months later, I had founded FACT.

I have so many such stories. I have felt that if these stories are not shared and read by as many people in a country where the pandemic is still a problem, it will be selfish of me. In the last few years and months I have gotten to know so many young people living with HIV and some of them have become my friends. I have unique relationships with each one of them. Getting to know them as I have done, I have come to know their fears and strengths.  What I haven’t seen as a fear in any of them is that they will die soon and so, the lesson that HIV is never a death sentence. This is something I felt from people with lived experiences of the virus.

The first story that comes to my mind is of a young person from Blantyre. I first met her in 2019. We fast became friends and grew intimate. At first she did not tell me about her status. We were spending a lot of time together. Just like most people, she was born with the Virus. One day while we sat down talking she looked at me as if she wanted to tell me and I asked twice, “Is there something you want to tell me?” She said I am sick, I have HIV with a smile. I smiled back and said, “You are not sick. You have a virus and that’s normal.” We laughed about it and have become good friends to date. Learning her story changed my life and the work I do.

She fell sick in 2005 when she was 12 and that was the first time her family learnt she had HIV. They did not tell her. She was only surprised to be taking meds all her life. It was only in 2009 when she found out from a Doctor who didn’t know she didn’t know. She eventually joined university and because the meds were giving her side effects, she stopped. She fell ill again. She ended up repeating one year. She also developed cancer. She had to undergo chemotherapy and surgery. She beat it and is now cancer free. There have been ups and downs in her journey but she made peace with it and takes her meds religiously. For the past few years she has been undetectable for HIV. This means that when they test her using PCR, her viral load shows no virus. This also means that she can hardly transmit the virus to someone and is very health like any other person.

Another story that I feel compelled to share is of a girl who reached out to me through Twitter. She and I have become the best of friends lately. She tells me in me she has found a friend. What she doesn’t know is that I too have found a friend in her. She makes me believe that there is nothing in this life I cannot defeat. Below is her story as she shared it with me;

Hi there, so a while back, I listened to your interview on spotlight. And I found it pretty enlightening. I’ve been wanting to text you, but I just didn’t really know the right words to say. I just felt like I needed to share my story.

I was diagnosed with HIV in 2013, a year after my mum had passed away. She had HIV too, but the thing is, I wasn’t born with it, and my mum had been HIV negative until she contracted the virus from my father who then was unfaithful.

So, what happened for me to know that I had HIV?

I’d been feeling back pains and my body was becoming weak. And on one particular Sunday I couldn’t get out of bed, my back hurt so badly and I couldn’t breathe properly. My chest and my back had developed some shingles and they’d hurt so badly. So I went to the hospital. They did every test and couldn’t find anything until they tested for HIV and found that I had it.

Hearing the news, broke my hurt really. I’d always been careful and I’d never slept or kissed anyone before. I just didn’t know where I got it from. What broke my heart the most was that my family directly assumed that I got the virus from sexual activities.

So years down the line and still confused, trying to figure out where I got the virus from but no answer. I’d thought and thought but just couldn’t figure it out. Until one day, my aunt and I had to go collect my mum’s death certificate that was going to be used as proof at the bank to enable us to put her accounts in my name. While at the bank, I decided to look at the death certificate and find out what killed my mother, because no one told what she was suffering from. And in bold black it was written “HIV/AIDS “. I shed a tear honestly, I had mixed emotions. But I was glad I found out because it all started to make sense now. I’d always use my mums, needles for sewing, her laser blades and ear rings too. And that’s how I contracted the virus.

My journey has been a learning process really. I’ve had to learn to accept myself for the new person I’d have to be, I’ve had to learn how to live with HIV and take my pills every day, I’ve had to learn how to eat right and take care of myself. I’ve learnt and am still learning.

The first few years, I lived in denial of my new normal. With every pill that I took, I’d always consider myself as one awaiting death. I just didn’t feel normal anymore. I’d have constant headaches, when I took my ARV’S I’d become really dizzy and so tired. I just couldn’t do it anymore, and so I stopped taking my medicine. I convinced myself that if I stopped taking my medicine, I’d feel normal. I really didn’t like myself and how some nurses and doctors would look at me when I went for my check-ups. I hated HIV radio adverts, I hated hearing the HIV jokes people made in class and that I just had to pretend to laugh so that I don’t seem suspicious. But what I hated the most is that, I was in it alone, I was fighting it all on my one and I just didn’t have anyone who I could talk to about how I was feeling. I also stopped taking my medicine because I was just ready to end my story. But long story short, I overcame it all and started treatment again. There’s really so much to talk concerning my journey, but this is just a bit about it.

I just felt like letting about of myself out, maybe it might make a difference one way or the other.

A few weeks ago, I encountered a young woman who is a student at NRC and is openly sharing her story through social media. Her name is Chikondi Chilambe. She is out there and doesn’t hide. I took interest and I went to meet her days ago. Here is her story;

I remember when I was 14 I had malaria and I visited Queen Elizabeth Central Hospital. I was admitted. While there they had to test me. I had no intention of getting tested but they said I had to get tested, so I gave in.

Results came out positive. I was surprised because at that moment I was still a virgin. It was hard for me to believe it. I was given Bactrim, an anti-bacterial drug and ARVs but I never took them because to me I was okay.

In 2016, a few years later I was diagnosed with TB. At this moment I had no say. I started taking the drugs though including ARVs which I had initially refused. Most of the time I was defaulting (not taking and not following the times to take). The doctors kept on changing my medicine each and every time I visited because they thought the other ones were not doing well on me not knowing that I was defaulting.

But last year I was hit hard again. I lost so much weight and they had to put me on a malnutrition program that was another embarrassing story and I didn’t follow up the process. Then at the end of year last year I asked myself, “what’s all this?”

I thought even if I keep on defaulting, I will not even wake up one day and find myself negative. I decided to build my self-esteem. I started taking the medicine but there was one challenge; I never wanted people to know that I had HIV.

This also gave me much problems. I was living in fear every day. What if someone found out? I would be embarrassed. But I realised, there was nothing wrong with me. I was bigger than the virus in me.

I decided to come out after following some few HIV activists who motivated me a lot. I came out in public and am happy I did that because now I can freely take my medicine and also I can talk it to people without thinking what they will say about me. This is my story. Others motivated me and I hope I can motivate others too.

I have been sharing these stories on social media. Obviously, others have seen them. So I have also received more messages from young people living with HIV wanting to meet fellow young people living with HIV. One comes to mind. Last Wednesday, I took a trip at 9:30pm to Bunda. Some young man had texted to meet me and this was a day before I left Lilongwe for back home in Blantyre. He was so happy I had made the trip after keeping him waiting.

We sat in the car and talked for almost an hour. He too is living with virus. In 2005 his mum died and the same year he was diagnosed with HIV. His father denies that he was born with it. He has made peace with it and is happily taking his drugs. I found this a milestone worth talking about in the work I am doing because it was the first time a young man had reached out and opened up to me after reading my stories.

Why do I think these stories are worth sharing? I know that someone is reading this right now and is living with HIV. If he or she felt alone, now he no longer feels so. We are beating HIV stigma and discrimination and this is how we win against the virus. Thank you so much and God bless you all!

Pemphero Mphande, Executive Director