- Jake Glaser tells of his mom, sister who lost battle on AIDS
- He is HIV positive since birth, but strong with full of hope
IN Tanzania it is estimated that a total of 1,400,000 people are living with Human Immunodeficiency Virus (HIV). Until October 2016 people living with HIV who knew their status reached 70 percent.
Progress has been made but there is still way to go before Tanzania attains the goal of testing 90 percent of all people who are living with HIV.
In the past decades, it gave the impression that those who were infected would hide the fact, felt unloved, and as there were no provision of AntiRetroViral (ARV) drugs, huge percentage contacted opportunistic diseases and ended up in anguish at their homes thinning up and with sores.
The advancement of science and technology as well as globalization and empathy from brothers and sisters abroad changes things a lot.
As of now in rural and urban areas alike, a substantial number of people infected has come out willingly, not only to be enrolled on the ARVs but also to make public their status as others go extra miles to become HIV/AIDS ambassadors, raising awareness among the public on HIV, how to take care of themselves and curb new infections, so that at the end of the day there is zero infections.
The situation and experience in Tanzania as regards to HIV/AIDS is not very different from that of other countries, but all depends on level of development, political will and activism among stakeholders to contain the malady.
Some developed countries’ government’s their corporations as well as nongovernmental organizations (NGOs) have been at the forefront to fight for the lives of those affected within their countries but as well in the less developed ones.
Communities and friends of those living with HIV/AIDS in Tanzania have been receiving support from the Central Government as well as local governments in different parts of the country and in different aspects to ensure the people lead normal lives, adherence to medication without experiencing stigma, and better still, to see to it that no new infection is brought about.
Undoubtedly, the government and its agencies alone could not wage a successful war against the pandemic, hence it had to, as it carries on now, join hands with other stakeholders, be they foreign or local, governments or institutions, but with the same objective with high standard of endurance.
For a while now, multiple NGOs, but have been very familiar with two, and two names of persons at their roots– Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) and another one that is also related to it in a way, going by the name of Ariel Glaser Pediatric AIDS Healthcare Initiative (AGPAHI).
There is an interesting story behind these names. AGPAHI was named in honor of Ariel Glaser, the daughter of United States pediatric AIDS advocate, Ms Elizabeth Glaser. Elizabeth contracted HIV through a blood transfusion while giving birth to Ariel in the US and unknowingly passed the virus on to Ariel through breast milk.
Ariel lost her battle with AIDS in 1988 and Elizabeth created the Pediatric AIDS Foundation to raise money for critical AIDS research for children. Elizabeth lost her own battle with AIDS in 1994, and to honor her legacy, the Pediatric AIDS Foundation was renamed the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in 2004 on the 10th anniversary of her death. Before she passed away, Ariel created a painting of how she envisioned the world—as a beautiful garden kept bright with sunshine and surrounded by love.
Arusha and Kilimanjaro – the Northern Zone regions of Tanzania have been carried through such history by non-other than a son to Elizabeth and a brother to Ariel, going by the name of Jake Glaser.
This is HIV/AIDS ambassador who tours different countries, sharing ideas with people, especially the youth about the situation. Mr Jake took part in several activities in Arusha and Kilimanjaro, exchanging ideas and telling his fellow youth of how they should be proud of their fight as they are heroes.
The gatherings are at Kibosho Designated Council Hospital (KDDH) in Moshi Rural District; Kilimanjaro Christian Medical Centre (KCMC) in Moshi Municipality in Kilimanjaro as well as the Children and Youth Forum 2017 in Arusha City Council, Arusha Region.
He gives his moving story, saying he is HIV positive, telling of how his mom and sister got infected and ultimately lost their respective fights.
When the light could have been seen as fading for him and others, it is actually far from it; he narrates: “My name is Jake Glaser, I am HIV positive and I am now 32 years old.
I am strong, I am proud, I am courageous, I am radical, I am disruptive and most of all I am just like all of you. Even though we live in different parts of the world, we are connected.
Connected as human beings, connected as a generation and connected by our drive to end HIV and AIDS in our lifetime. “I know how hard it can be to live with HIV, to lose those we love and to accept that HIV is a part of who we are.
I also know that living with HIV can make us grow, educate, inspire and live a life of true value as leaders of our generation and all that follow us.
I know this because I live it every day,” he says that before adolescents, who are HIV positive at KDDH as they keep eyes on him and get a prompt Kiswahili translation.
He says he is sure that some of the fellows present are thinking who guy is, why is he there and how does he know what they go through in their lives.
How does he know what they confront every day and the challenges that they face. He is of an opinion that the guys have every right to feel that way, insisting that he and they are more similar than different. “My journey with HIV started four years before I was born. My mother Elizabeth Glaser gave birth to my older sister Ariel in 1981 in California.
During birth she lost a lot of blood and needed a blood transfusion. This was in 1981, 36 years ago, a time when tests for HIV did not exist. From that transfusion she contracted HIV.
There was nothing we could have done because no one knew. Three years later in 1984 this handsome man you are looking at today was born. “It wasn’t soon after my birth that my sister Ariel started to show signs of illness. It was almost as if she got the flu one week, and then was better the next, only to get sick again the following week.
This was in 1984, at this point we had more knowledge of HIV but still not enough. A doctor decided to run a test and it came back positive. They told us that my sister was HIV positive and so was my mother and I.
My father did not contract the virus,” he says, looking strong. Mr Jake says that at a time when little was known about HIV, the world’s first reaction was fear.
An emotional reaction to something people did not understand. It made society label the virus in unfair ways and that led to stigma. But he says that it did not stop his mother.
While nothing was being done to address stigma around HIV, his mother chose to do something. Her life as well her sister’s and that of his relied on the world learning more about HIV.
He opens up that in 1987, his sister became ill once again, and that time she did not recover – Ariel passed away at the age of seven. He says that his mom fought to save his life.
She started the Pediatric AIDS Foundation to save the lives of all children infected with HIV. The foundation devoted every dollar they raised towards research.It was through the collaborative work between the foundation and research partners that helped develop the first ARVs for adults and children. It was a starting point but not nearly enough.
“This had to become a global fight!…A human fight!...A human right to live! In 1992 when she spoke at the democratic national convention during President Clinton’s administration, she made HIV a human issue.
Two years after her speech, she became ill and soon passed away. I was 10 years old. My father along with those that were inspired by her and understood her mission continued her work through the foundation which became the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) that we know today.
“Her courage to stand for what she knew to be right, her strength to go against the grain and her love for humanity taught us a lesson that we can apply once again.
She showed us how we can change the world, and today, together, we can do the same for the future. We can do it in ways that my mother could have never imagined. In ways that will end HIV once and for all.
It will take working together and it will take innovation. We will need to think out of the box and we have to re-write the story of what HIV means.
“The stigma that we see today is only there because it was given to us, no one asked us if we wanted it, or how we felt about it, it was just placed on us. As a kid, I remember how much stigma affected me.
People would not want to be near my family, I was not allowed in schools, and people judged me for something I could not control. I remember looking at my medication and thinking to myself, every time I see those pills it reminds me of my HIV. Every time I see those pills, it makes me feel different than those around me.
Every time I see those pills, it reminded me of what took my mother and sister, and it made me angry,” he says. Jake unveils that because of anger, in the past he made bad decisions, ignored my status, flushed his pills down the toilet, never spoke of HIV to anyone, resented it with all of his being, allowed the stigma to control him and HIV define him. Now, he says that knows how hard it could be to live HIV positive.
Every day he remind himself that he did not ask for that stigma but it was placed on him. While stigma controlled him as a kid, today he has let it go. “Now I look at my pills and they are just pills. I look at people around me who are HIV negative and they take pills too.
My dad takes pills for high cholesterol, my friends take vitamin pills to be healthy and stay strong, just as I take my pills to do the same. In today’s world, taking pills is a normal thing.
More than half of the world’s population take medications for something. So why should I feel different for taking mine? This is the reality of the world today.
We need to help others let go of the past. We need to invite others to join us as we move into the future. “The world remembers HIV as it was 30 years ago. We knew nothing about it then. We were afraid of it. It seemed to be a death sentence. The world of HIV has now changed but the public knowledge of HIV has not.
It is up to us to change that. I would like to tell you story. It happened to me exactly four years ago. It showed me how we can end stigma, and start our path to end HIV.
This was my opportunity to become a leader and a teacher within my community just like you can be for yours. “Four years ago I met my beautiful girlfriend. From the moment I saw her I knew she was the one.
It was not long after we met that we started dating. She chose to tell her parents about our relationship and me being HIV positive. Their response was strong.
They did not want her to date me because of HIV. At first I was scared, uncertain and confused. Why did they react the way they did? I knew having HIV was not a death sentence.
The medications we have today are incredible if we get the treatment we need. But all they could focus on was the memories of people dying from HIV 30 years ago ,” he says in a somber mood. Jake narrates that at first he did not understand why they struggled support the relationship.
He sat them down and educated them on the reality of HIV nowadays. He connected them with his doctor so they could hear it from a professional as well.
Together they became more aware and understood that their relationship could be just like anyone else. Because of the medication he takes every day, never missing a dose, his viral load is undetectable, which means he would not pass on the virus. “Because of the medication I take, I will not die from HIV but I will live a long, strong, and incredible life.
Because of the medication I take, I am healthy and because of that their daughter will be too. My girlfriend and I have been together for four years now and we love each other very much, and so do her parents. They now tell me they love me every day.
I want all of you to understand that you can do the same for your friends, family and in your current and future relationships. This is the world we live in. It is beautiful, it is full of opportunity and the future belongs to you and your generation.
“It is your turn to tell a new story, one that will create a new memory of HIV for everyone in the world to use as a springboard into the future. So I will ask you to do one favor for me as you continue through this weekend’s conference and into the rest of your lives.
I want you to think about this idea. What if we could hit a button and erase everyone’s ideas, fears, and past memories of HIV. What if we could erase stigma entirely and have a clean slate to educate the world about what it means to live with HIV, and how we can end this epidemic in our lifetime.
What if we could tell our stories and give the world a memory of HIV that is of survival, longevity and abundance of life.
“Well, I am here to tell you that yes…we can. As we move forward, it is our responsibility to rewrite the history books of HIV for what it means to us.
My name is Jake Glaser, I am HIV positive, I have a beautiful girlfriend who loves me, we will have a family of our own, and HIV will not control it.
I am HIV positive and I am a leader in my community because of the choices that I make, the life I live, and example I set. I am HIV positive and because I care for myself and others, I live free,” that is his story.