A new publication gives people living with HIV a voice in Pakistan

As part of World AIDS 2015, UNAIDS Pakistan and partners published Positive Diaries, which is a collection of photographs and interviews with men and women living with HIV in Pakistan. One of the people featured is Nazir Masih, the CEO and founder of the New Lights AIDS Control Society. The organization was the first in Pakistan to work with people living with HIV and their families.

When the organization was founded in 1999 there was no proper treatment center for people living with HIV, but New Lights worked to raise awareness and empower HIV positive people to face their challenges and build the skills they needed to live a quality life. It was the first organization to introduce antiretroviral medicine in Pakistan to its members in 2003. UNAIDS conducted the following interview with  Nazir Masih.

UNAIDS: You were the first person in Pakistan to openly declare yourself as living with HIV. What brought you to do that?

Nazir Masih: It has been a long journey. It started back in 1990 in Abu Dhabi, where I had been living for 14 years and where I found out that I was HIV positive. I was not aware at the time of the need to protect myself when having sexual adventures. My wife and five children were HIV negative which was a relief, but we returned to Pakistan, shocked, fearful and clueless about what could be done.

The environment in Pakistan was very challenging at that time. There was a complete denial of the HIV problem and I had no support other than that of my wife. To make matters even worse,  a journalist published my photograph with my name. So I became the first person to be open  about my status, but in a place where there was no medical help and no support network. I was met with a lot of hostility and I felt abandoned.

UNAIDS: Why did you decide to found the New Lights AIDS Control Society?

Nazir Masih: In 1994, I was lucky to be introduced to a Catholic priest from the Philippines who was in Pakistan to work with people living with HIV. I worked with him for four years but it was difficult to reach out because people preferred to live in silence.

In 1997, UNAIDS invited me to an international AIDS conference in Manila to share my experience. When I went there I saw many men and women, who were much younger than me and who were boldly disclosing their status. So I thought I need to  change when I go back  to Pakistan. I need to raise my voice for HIV positive people and advocate for our needs and support.  I founded the New Lights AIDS Control AIDS Control Society two years later.

UNAIDS: In the late nineties, the HIV epidemic was different than it is now. There was no treatment, what kind of work did New Lights do?

Nazir Masih: Although I was living with HIV, I did not get sick very often in the late nineties. I only had a few minor problems, which got cleared up when I went to the doctor. However, I had many friends who became very ill and who eventually died.

By 2003 many people were losing their race with life and I felt I needed to help them, so I knocked on the doors of every national and international donor agency I could find, so that treatment would be provided as soon as possible. The Catholic Relief Service helped me out by supporting the CD4 tests of six HIV positive people, including myself. Then, we were able to get medicine for all six of us for six months from India. As more and more people found out that New Lights had medicine for HIV positive people they started coming to us. So, we got funding from donors and we were able to provide treatment to 36 people. When I saw the demand for medicine was increasing every day I pushed for it to be registered in Pakistan as soon as possible so that the government would provide antiretroviral medicine to people living with HIV.

Today New Lights is supporting around 1000 people.

UNAIDS: Has the situation changed a lot for people living with HIV?

Nazir Masih: People are now able to get the medicines but they often do not understand their importance. They very easily sometimes leave behind the ARVs, thinking that they can get them anywhere. They don’t understand the journey we have gone through to get treatment and the people who have lost their lives waiting . Now people can get their medicine within one or two weeks of being diagnosed.

While stigma and discrimination towards people living with HIV has decreased a bit, still many people continue to face it. HIV is a problem of human beings and it is not an issue of any particular religion or nation. That is why hurdles and threats can not deter me from the path of helping those in need. I will not stop come what may, because this is what I have been made for.

Positive Diaries can be viewed here: http://bit.ly/1Tkf85d


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