It was not much more than a year ago that I first wrote about Love to Love Organization for PositiveLite.com, having been introduced to their work by my Facebook friend, William Matovu, a young HIV activist working there as an HIV educator and peer advocate.. Suddenly one day there he was on Face Book, with: “This is how it's gonna be... responding to the development of youths and who are less advantaged and orphans by promoting their God given talents." I liked the attitude and I wanted to know more.
Love to Love Organization supports orphans and children living with HIV in Uganda and I was struck most of all by the way they help children develop their abilities, preparing them for a self-sufficient life. I was also impressed by the evident sincerity and dedication of William and of Daniel Ssemuli, Love to Love’s Executive Director.
Not long after I first wrote about them, the organization released its first video documentary -- scroll to the bottom of this page to view it -- in which William gives a very good overview of Love to Love's multifaceted response to HIV, which has involved tirelessly spreading the word that people living with HIV who have an undetectable viral load cannot transmit the virus sexually.
Love to Love Organization have been especially robust supporters of the #UequalsU campaign. Their counter-stigma work takes place across several platforms, including their recently released lyric video for the U=U song, sung by Danny and William and produced by Moses Rain.
From left: Moses Rain, William Matovu, Daniel Ssemuli
The results of all this activity are impressive, all the more so in view of the available resources, as they got this far without government funding. The shining light we can see in these young faces is ample tribute to the courage and devotion of the men and women of Love to Love Organization.
But the HIV response is international and U.S. influence has a long reach. Recent changes to PEPFAR seem certain to bring medication stockouts and interruptions to programs in several African countries, Uganda among them.
Also, homophobia and HIV stigma are rife and pervasive in Uganda, thanks largely to American evangelists. And all of these factors combine to place vulnerable people in harm's way.
Thank you for taking the time to chat with us William. With all that's going on at Love to Love Organization, what does a typical day look like for you? Or is there such a thing as a typical day?
My typical day is mostly based on doing charity work, especially doing advocacy and helping the needy. So I’m committed to that, day by day, until I see that I have made this world a better place for all, regardless of their HIV status.
Are you specialized in any particular area of operations?
Yes, I have a number of activities but I love doing advocacy and helping the less privileged people especially the young ones. That’s what my heart yearns at most.
You have been a tireless supporter of the Undetectable = Untransmittable (U=U) campaign since I’ve known you – are you seeing the U=U knowledge get out to the community there yet?
The U=U message is not yet so effective in my country, generally because most people living in rural areas have no access to quality health services and I have seen this on TV news several times as per now. I have been following what’s happening right now in Uganda about health status.
Some weeks back I was watching TV and I saw a young mother of two children who had missed her HIV medication dose for almost three months and I felt so touched, yet she is still breast feeding her last born and I felt heartbroken. And yet recently the government released 13 Billion Ugandan shillings for the age limit bill consultation, a minor issue. Instead of focusing on the future generation they are focusing on the next general election, while at the same time health workers in government hospitals are on strike because they are underpaid and the health centers lack essential things like medication, gloves and testing kits, just to mention but a few.
These barriers to treatment are among the reasons why some said the U=U message was a terrible message for Africa. Cultural issues were cited as well. What do you say to that, William?
Yes Robert, they think it’s a terrible message for Africa because they think that when we get that information we shall become irresponsible, which is wrong. I have been fought by some people because of supporting the U=U message but I will always stick on true due to the fact that I have evidence on it and I have seen a lot of my friends testify about #UequalsU here in Uganda and the rest of the world.
In my conclusion, Africans have a right to know this too.
It's often a pretty big deal for people when they find out they can’t transmit the virus by sexual means if they have a suppressed viral load and they tend to become big supporters of the campaign once theey know. This looks to be true in Africa as well.
I will never get tired of spreading the message.
Are you able to work together with and partner with other organizations in Uganda to do your advocacy or render assistance to people living with HIV? Is there a good level of cooperation among the organizations there?
Yes, so far we are working with New Hope Uganda and we look forward to partnering with others soon. And we have good cooperation with them.
Recently it was announced that the International Treatment Preparedness Coalition (ITPC) and Prevention Access Campaign (PAC) have partnered to spread U=U knowledge worldwide. It seems like a very positive development for educating people and sweeping out stigma – what are your thoughts?
The moment I saw this message in the #UequalsU Facebook group I felt so happy. This shows a great achievement for all U=U supporters and our energy that we have injected into this has started yielding fruits. I agree with you that this is a positive development and a great benefit for African countries. Africans living with HIV have a right to know this message and this campaign is simple but hugely important for all of us because it is based on solid, scientific evidence. I have witnessed a lot of testimonies about #UequalsU here in my country and across the globe.
A while back, you published an article in PositiveLite.com where you detailed what you saw as the biggest challenges the HIV movement faces in Uganda. Underfunding was one of the main factors and that was months ago. A few things have happened since then. Can you talk a bit about the withdrawal of PEPFAR support and what it’s doing for the HIV effort in Uganda?
First of all, the cutoff of PEPFAR support from African countries: am not happy with it. It is going to cause a lot of new infections and AIDS-related deaths among us Africans, especially those who live in a low income setting. PEPFAR has helped a lot in HIV prevention, care and treatment here in Uganda and I am one of the beneficiaries because the health facility where I get my HIV medication has been supported by PEPFAR.
In my opinion the Government of USA should find another solution for this or otherwise this will delay the 90-90-90 goal of UNAIDS and many more people will continue to die.
You also spoke of rising levels of ignorance and stigma – why do you think that is happening?
Ignorance and stigma are rising high due to the fact that many people here in Uganda lack information about this epidemic, especially in the rural areas country wide and a lot of sensitization is still needed in order to overcome these problems.
Does criminalization of key populations, such as LGBT, sex workers, people who take drugs, play a big role in this? Can members of those populations find support if they contract HIV?
For the key populations here in Uganda it’s still a big challenge for them to express their human rights because of African culture and as well as the church. That’s why stigma it’s still at its highest peak and this hinders them in having access to quality health services and other services. So this has increased a lot of felt stigma and enacted stigma.
And at the end of the day, we lose them.
When people talk about stigma they usually cite ignorance as the cause, but these pastors you mentioned in your recent PositiveLite.com article are an example of people in a position of trust and power who manipulate the ignorant and the vulnerable. And we know there have been American evangelists in Uganda, inciting homophobia, AIDS phobia. Perhaps we need to focus more on those who profit from all this massive stigma and ignorance and pay due attention to the ways such ignorance is fostered. Your thoughts?
Yeah it’s true that these so-called pastors have used the ignorance of these innocent people to manipulate them. That’s why death rates of people living with HIV are so high here. They perform planned miracles to get more followers, in order to get more money from people. For instance, they use media platforms like television. They’ll pay someone to come to their church to be prayed for, putting in people’s minds that this person is HIV-positive. After not yet a week, he or she comes back to the same church to give a testimony to show the world that this man of God has healed him or her from HIV. So then the innocent person living with HIV who has been watching TV falls into the trap.
We’ve talked before about the political tension ongoing in Uganda – does it impact your work there much?
Yes it does. Here in Uganda the government does not want Nonprofit Organizations to interfere with politics and if you’re found doing it, they stop the organization from operating. For instance, when Action AID Uganda tried to fight for the rights of Ugandans about the age limit bill scandal, the government froze all their bank accounts and even locked up their offices and took all their office gadgets like computers, claiming that they were trying to fund the opposition leaders to fight government.
Where do you draw inspiration from when things are tough?
When things go tough on my side I pray to God, listen to music and share the condition with friends. These things can make me feel relieved from anything that is bothering me until I find a solution for it.
Who have been your best mentors, in advocacy and in life?
There are a number of people who have done great things in my life. I take this opportunity to recognize a few of them.
Nakyazze Joyce: The day I tested positive for HIV after the death of all my parents, this lady comforted me as her own son. And she acted as my aunt in signing papers to start my HIV medication because at first my step mum refused to escort me to the clinic after knowing that I’d tested positive. So this lady is one of the heroes in my life.
Ssemuli Daniel Steven: Mr. Daniel is more than a mentor but also a great friend and a father as well. I met him in 2010, when I was still in my high school, along with other fellow young people both affected and infected with HIV in different parts of the country. This how Love To Love Organization began and he is the vision bearer . Since then he has been always supportive, he has been there for me at all times.
Kawempe Home Care: I got to know this charity Organization in the year 2008, after the death of both my parents, when I tested positive for HIV at the age of 14. In 2012 I got a sponsor whose name is Gunnhild Rein Almås from this very organization, after being denied a chance to go back to school by my step mum. Through this organization I received support from her as far my education was concerned. So she is still a blessing in my life. Through Kawempe Home Care I got this guardian angel who changed my life and I am so glad that now i can do the same to support and help others.
I would also like to thank others who haven’t been mentioned here, because I really have a lot of people around the world who have been a blessing in my life God bless you all.
I lost my heart a bit the first time I saw a video Daniel produced that had the children singing. I found it so joyful and powerful. Music and natural talent can sometimes build bridges where other things fail – and when it’s coming from children, that combination is hard to beat. Given the chance, they really are their own best advocates, aren’t they?
Yes, as you know me well Robert, I love being with the kids. So this is where my greatest happiness yields from. They bring joy to my life when I am with them because I know what it means to be an orphan. I was once like them, that’s why Daniel and I mentor them in addressing matters concerning HIV/AIDs and STIs. We also train them to be responsible citizens and we nurture their talents so they can grow up to realize their full potential and become self-reliant.
What is the best thing, your favorite thing about the work you and Daniel and everybody are doing at Love to Love Organization?
There are a number of best things that we do, my colleagues and me; but advocacy is the main thing. As our Mission Statement says, we love, care and educate both those affected and infected with HIV, especially children and young people. We are so passionate about the work that we do. With all these, our end result is to see the most affected communities have a better life, hence making this world a better place for them to live in.
Thanks again for speaking with us today Willliam. I'm grateful for the work that you and Love to Love Organization, and all the other activists and organizations are doing in Uganda and across Africa and across the world.
Be sure to check us this Friday, when William Matovu's first column as a regular PositiveLite.com contributor will be appearing!