Thokozile (Thoko) Beatrex Phiri, a Malawian advocate for global health, has experienced tremendous loss due to poverty and disease. Losing several family members to HIV-TB co-infection was devastating for Thoko. But her suffering has not silenced her.
As an ambassador for the Global Fund —an institution that financially supports prevention and treatment programs for people living with HIV/AIDS, tuberculosis (TB), and malaria—Thoko boldly speaks out for those in need of the fund’s lifesaving efforts.
Through the support of the Global Fund and other donors, Thoko’s organization—the Malawi Interfaith AIDS Association (MIAA) —focuses on the education, treatment, and mobilization of Christians and Muslims against HIV/AIDS. This faith-based partnership is not only smart, strategic, and sustainable—it is changing lives.
As part of Sojourners magazine’s August 2013 coverage on health care , assistant editor Elaina Ramsey sat down with Thoko in July 2013 to discuss the urgency of investing in the global fight against HIV/AIDS, TB, and malaria.—The Editors
Elaina Ramsey: Tell me about your work with the Malawi Interfaith AIDS Association.
Thoko Beatrex Phiri: MIAA is an umbrella for various faith-based organizations. In Malawi, 98 percent of the population belongs to one faith or another. The faith communities are on the forefront of HIV, TB, and malaria treatment because of their influence.
We come from very faithful communities. If the preacher says, “I can see prosperity in you,” you believe it with all of your heart. From that background, the people decided to collaborate with the faith community to fight HIV because of their reach and how much impact a faith voice is in terms of medication. For example, if a faith leader says, “You have to stick with your medication,” you have to believe it. It was decided that the faith community has to be engaged in outreach.
How did you come to be an ambassador with the Global Fund?
I got involved with the Global Fund through my passion to do something. I come from a family of six. When you look at HIV/AIDS in Malawi, it has affected so many families and communities. My family was not spared.
In 1989, my father started to get ill. He was in and out of the hospital for weeks. That situation went on until 1997 and got really worse, but we didn’t know what was wrong with him. All we knew, coming from a malaria-endemic country, is that when you have a fever it’s malaria. The doctor said to my mom, “I think your husband is HIV-positive.” To complicate matters, my father also had TB. During that time, it was a death sentence if you were found HIV-positive. There was no hope for survival, because there were no medicines. And if there were, it was only the rich who could afford it. Indeed, a week later my dad passed away.
We were left with a single mother who was not working. My father was the breadwinner in the family. You can imagine that losing a father was a great loss. My mother could not afford to sustain the family with basic needs, such as nutrition, school fees, or rent. Three members of my family also discovered they were HIV-positive: my mother, my younger sister, and younger brother. It was a blow to the whole family.
There was lot of talk about HIV in my country, but there were few results. So it was called a “government disease.” In 2003, the Global Fund provided free antiretroviral (ARV) drugs, and our society began to have hope. The Global Fund also initiated community-centered activities and from that sprouted faith-based organizations engaged in HIV-TB activities. My remaining family members received access to these ARV drugs.
In 2008, I started coughing. Lucky enough, the doctors found TB and treated it. But then the doctors discovered that my younger brother had TB as well, and he died. I’m emphasizing all this, because there are still gaps that exist. Had the doctors found TB earlier on, my brother would have been treated. But because he was HIV-positive and had TB, it was hard to diagnosis.
Unfortunately, two years ago I also lost my mother to what was suspected as tuberculosis. The reason why I’m saying this was suspected is because the doctor could not put her on TB drugs without confirmation from the lab, but he knew she might have TB. If you look at the circumstances that surround my brother’s death and my mother’s death, they were accessing antiretroviral drugs. But they could not access TB medication in time. That demonstrates the gaps that are still there. We are fighting HIV and have made some progress, but TB is claiming lives of those with HIV.
I live with my younger sister. I’m scared—not that she’s HIV-positive, but because there’s still an enemy outside: tuberculosis. It has already claimed three lives in my family. I see that as a threat. It posed a threat on my life, and there are many other people out there in that same position.
When you look at all these situations, it propelled me to do something for the people who don’t have a voice. In Malawi, we have more than 1 million people living with HIV out of a population of about 16 million. The government has not reached out to everyone yet. We have about 400,000 people on HIV medication, and we have a huge need. Our efforts are in the right direction, but we just have to take that extra step.
I’ve read that MIAA coordinates with women as part of your outreach efforts. Why is that important?
Women have been affected so much by HIV. From my story, if you look at my mother, she was affected and left behind to take care of four children without a job. Women are in a very vulnerable position when it comes to the three diseases, because they don’t have jobs and their economic status is so low. As in many countries, men are the ones who have most of the jobs, so they have access to resources. But if you look at a woman who is HIV-positive and not working, it’s really hard to maintain health care and to access other basic necessities. So that’s what drove my passion to work with women.
What role has faith-based groups had in reducing stigma around HIV/AIDS?
Stigma and discrimination are some of the hindrances of the HIV programming. The engagement of the faith leaders was to ensure that they preach to their communities the acceptance of HIV and that HIV itself is not a sin. You can get HIV in many ways. We have several adolescents living with HIV, but they’ve never slept with anyone. How can HIV be a sin?
When we engage the faith leaders, we sit down with them to demystify HIV and to explain the opportunities that exist and the power that they have to change the world. We have meetings with religious leaders and we discuss many things, such as prevention, transmission, contraception, and the engagement of youth. Some of the religious leaders actually devised a model that will help demystify issues of HIV. We help the faith community put their efforts in the right channel.
When someone is very ill, the pastors will go to someone’s home and pray for them. They tell the sick to keep taking their medicine because God has given them this gift. For someone who’s sick, would you stop taking medication if God says to do it?
When someone is told they are HIV-positive, they say to themselves that they will kill themselves because they’re going to die anyway. And that’s where the faith groups come in to say that there is hope.
Can you share any success stories you’ve witnessed of lives being transformed by HIV/AIDS, TB, and malaria treatment?
There are loads of them! I’ll give you a case study of a woman with two kids who were HIV-positive. She was forced by the husband to give birth to a third child. During her pregnancy, she had a test and discovered she was HIV-positive. When she told her husband, he said he knew nothing about HIV/AIDS. The hospital advised her not to have more children.
After giving birth to the third child, she got pregnant again by her husband. She gave birth to twins, but the success story is that these children are HIV-negative because the mother went through the Prevention of Mother-to-Child Transmission program. That shows that the support of the government, the Global Fund, USAID, PEPFAR, and local communities are yielding positive results where children are now born HIV-negative.
We had to counsel the woman and the husband to try the Prevention of Mother-to-Child Transmission program. The husband took an HIV test and is now taking antiretroviral therapy—and so is the woman. It was through the support of the Global Fund and the intervention of civil society organizations that the parents accepted the treatment. Indeed, all our efforts are not in vain. We are actually changing the world.
Polio used to be a big problem, but people fought and fought and it was eradicated. Now we are in the era of HIV, TB, and malaria. But we can see the end. This is not the time to backtrack. We have made progress, and we need to sustain it in whatever way we can. We have the intelligence and the science. We just need to get the tests where they’re needed to end TB. We have the HIV vaccine in progress. We just need to pump in the money where we can see it yielding results.
How does your faith influence your work?
I’m quite religious actually. When there were a lot of problems in my house, my mother would say, “Let’s sit down and pray.” After praying, I felt hope and relief. It was therapy for me. I grew up with that. That’s why I work with the faith community.
What gives you hope and sustains you?
It gives me hope to see that we have evolved from the day to day attendance of funerals to celebrations in my country. We mourn in the memory of those who have departed, but not for those who are going to leave us. In the past, people didn’t work much. If they weren’t caring for someone who was sick, they were attending a funeral. We now work on a daily basis. I know that someday people will talk about zero TB and HIV deaths. I see that happening, if we put our efforts in the right direction.