Reporting by Mark Can, Punena Parish HIV/AIDS Project Officer
A young mother, 32-year-old Lakot, describes her life after being diagnosed with HIV. Two years ago, she joined a ChildFund-supported group in her village in northern Uganda, which has allowed her to receive support from people going through similar challenges. Dec. 1 is World AIDS Day. In Uganda, approximately 1.5 million people are living with HIV, according to 2014 statistics from UNAIDS, and most people in sub-Saharan Africa are either directly or indirectly affected by the disease.
I joined the family support group 2 years ago. Before I joined, life was hard. I was living in fear and isolation because I was HIV positive.
After joining the group, life became easier. From the other members, I learned a lot about how to take care of myself and my family. I sometimes used to forget to take my medication, but the group members remind me, and if I need it, they escort me to pick up my drugs. Now I have no fear of living with the disease.
I also realized that I was not alone and that I could freely live and talk about it. That’s why I am even free to talk to you right now.
In the process of our meetings, we decided that we needed to save some money to support ourselves in times of need. So, we started the bol chup (village savings and loan) group. We meet every Monday and collect money after our support meetings. This group helps us when we are in need of money; we borrow funds and pay them back with little interest.
Because of the family support group meetings, I realized the need to disclose my status to my children.
I am appealing to the government and to nongovernmental organizations asking they support our groups more, in terms of finances and sponsorship for our children, so they can continue to study in school.
From Ya Sainey Gaye, ChildFund The Gambia:
James Pimundu, national director of ChildFund The Gambia, shared his thoughts about the United Nations’ goal to end the spread of HIV by 2030. He also highlighted the need to reflect on the challenges faced during the past in the fight against HIV and AIDS. Pimundu called for strong partnership with other international nongovernmental organizations, the private sector and civil groups to complement government initiatives.
He also touched on the impact that HIV and AIDS have on people’s lives, especially in the area of child mortality: “It creates marginalization of those infected due to the stigma attached to its name. This can hinder the fight for control and, by extension, eradication of the disease. ChildFund believes that through engagement with marginalized people — and using the power of advocacy, community mobilization and a host of other strategies to reach those affected directly and indirectly — will help us succeed in the total eradication of HIV and AIDS by the year 2030.”
Finally, Pimundu called for changes in attitude, bringing about greater support and understanding of people diagnosed with HIV and AIDS. Together, our collaborative actions will certainly bring a halt to the spread of the disease, he added.
Dec. 1 is World AIDS Day. Although many advancements have been made to treat HIV and prevent AIDS-related deaths, it still remains a major public health issue, especially in sub-Saharan Africa. This video, featuring a father in Zambia, shows the toll the disease takes on families, including many who live in communities supported by ChildFund. He speaks about creating a memory book for his children, showing what he has experienced during his life. They’re his memories, but the book is meant to preserve his memory as well, in the case of his death. Take a moment and watch, and find out more about HIV and AIDS, as well as what you can do to help.
By Saroj Pattnaik, ChildFund India
Today we recognize World AIDS Day by taking a look at the hardships encountered by an Indian boy who was diagnosed HIV-positive after losing his parents to AIDS.
The pain that Appashi has gone through is too overwhelming to be contained in an 11-year-old’s heart. At the age of 3, he lost both his parents to AIDS. Though he found a shelter at his maternal uncle’s place, he soon became a victim of severe discrimination and negligence — because he too was found to be HIV-positive.
Living in India’s Karnataka state, Appashi was kept in a separate room and not allowed to mingle with his uncle’s children, who were all older than him. While they attended school, he was tasked with taking care of the cattle. While the other family members ate together, he took his meals separately in the corner of the room.
“I cannot remember when the last time I had food together with others at my uncle’s house. They often ate chicken, but I was never given any. Whenever I asked for it, I got scolded by my aunt,” Appashi says.
“I was spending my day feeding and taking care of the cattle at home. I was hardly allowed to play, not even with other children in the village. The only thing my uncle was doing for me was that he was taking me to a hospital when I was falling sick,” he recalls. “This was my life till I came here three years ago.”
Appashi was brought to Namma Makkala Dhama, a unique rehabilitation center for orphans and other children affected by HIV and AIDS, run by Ujwala Rural Development Service Society in Bhagalkot district and supported by ChildFund. Last year, the orphanage was renamed as Nammuru Dham (My Village) and was shifted to Bijapur, a small city some 500 kilometers away from Bangalore.
When Appashi came to the orphanage, he was severely malnourished and sick. The officials at the center immediately carried out his health check-up and gave him medication including antiretroviral therapy (ART) — the standard medication used to suppress the HIV virus and stop progression of the disease.
“At the time of admission to our orphanage, he was weighing only 15 kilograms [about 34 pounds], which was much below the standard weight for a 7-year-old,” says URDSS director Vasudev Tolabandi. We gave him special care as required by his health condition. With proper food and medication, his condition improved gradually and now he is weighing 28 kilos [about 62 pounds].”
Appashi, now in fifth grade, says he is relieved to be living in the center and now looks forward to a better life. “I am happy that I don’t have to take care of cattle anymore. I am getting good food, including my favorite dish — chicken curry and scrambled egg,” he says. “All my friends here also like chicken and egg. I think all children should be given chicken, eggs, milk and fruits because they provide all vitamins to our body,” he reasons.
“Here, I have many friends with whom I study and play together. I am lucky to be here,” Appashi says, adding he would like to become a police officer and punish those who commit violence against children.
According to Tolabandi, there are 10 children like Appashi who are HIV-positive and need constant care and supervision. “We had 30 children aged 6 to 14 years at our center. But recently, some children who were not HIV-infected have been allowed to go to their families or relatives’ places on the assurance that they will be taken care of properly,” he says.
“There are so many children who need our help, and we are planning to enroll 25 more children in the orphanage within a couple of weeks,” he says, adding that arranging funds for the children’s basic needs such as food, clothes, medicine and study materials is still a big problem.
You can help children like Appashi on World AIDS Day by making a contribution to the center through our Gifts of Love & Hope catalog.
By Kate Andrews, with reporting by Saroj Pattnaik, ChildFund India, and ChildFund Kenya staff
The first World AIDS Day was held in 1988, and a great number of medical and social advances have been made in the 24 years since then. Nevertheless, much remains to be done. Today, we turn our focus to ChildFund’s work in India and Africa.
Rajashri is a supervisor for the Link Workers Scheme (LWS), a program in India that helps children orphaned by AIDS and some who are HIV-positive. She provides medication for hundreds of children infected with the disease in 19 districts of Andhra Pradesh, a central Indian province with a population of about 76 million. Started in 2008 by the national and regional governments with help from ChildFund India, LWS targets high-risk groups with prevention and risk-reduction information.
ChildFund India has identified more than 7,400 children in Andhra Pradesh who have been orphaned or left otherwise vulnerable by AIDS or HIV.
Although African nations often receive the most attention when the topic of AIDS arises, India has approximately 2.4 million people living with HIV, the third-highest population in the world, based on a 2009 estimate by UNAIDS. According to the Indian government, the state of Andhra Pradesh reported the second-highest HIV rate in the nation.
The LWS program, which ChildFund supports, began in three districts in Andhra Pradesh in 2008, reaching 19 districts in 2011. About 23,000 volunteers have been engaged in this effort, and more than 11,600 HIV-positive patients have been identified and helped by the state’s health department.
ChildFund also is working in African countries to help prevent the spread of AIDS. In Ethiopia, we work with children, youth, parents and community leaders to provide HIV and AIDS prevention and testing interventions as well as make available social networks to counter stigma and discrimination.
Through our Strengthening Community Safety Nets program in the Addis Ababa and Oromia areas, 50,000 orphans and vulnerable children affected by HIV and AIDS have received family-centered care and support. The program builds on existing partnerships with community groups and local volunteers to build the resilience of families and community structures to support children affected by HIV, especially those under age 11.
In Kenya, where an estimated 1.2 million people are infected with HIV (the same number as the far more populous United States, according to the Centers for Disease Control and Prevention), a ChildFund program has helped connect HIV-positive and other vulnerable children to organizations that offer anti-retroviral treatment and social assistance.
The number of vulnerable children attending school and receiving health care has risen since the 2005 institution of Weaving the Safety Net, part of the U.S. President’s Emergency Plan for AIDS Relief. Today, that program has concluded, but ChildFund’s work with orphans and vulnerable children impacted by HIV and AIDS continues. As of spring 2012, more than 73,000 orphans and vulnerable children were being served in Nairobi, and 3,200 HIV-positive children were enrolled in support groups.
Lucy, a 9-year-old who is HIV-positive, lives in Lamu, an island off the coast of Kenya. She, her grandmother, her aunt and four cousins share a one-room thatched home. When Lucy was a baby, her mother died from AIDS complications. Their village had few resources to deal with the disease, but now, with ChildFund’s support, Lucy goes to a district hospital to receive anti-retroviral treatment. She is healthy and thriving at school.
At age 8, Lucy started attending a support group for children living with HIV. “I know my status, and that is why I take my medicine, so that I can remain strong to be able to go to school and also play like the other children,” Lucy says. “My teacher and some neighbors know my status, too, and I know they love and support me.”
A side benefit of ChildFund’s and others’ work in Kenya has been a greater acceptance of those affected by HIV, lessening the stigma of the disease.
“When I was requested to enroll her in a support group, I hesitated, but today Lucy shares information about the support group discussions with all of us here,” her grandmother says. “Through her, we have learned a lot about HIV and AIDS.”
by Virginia Sowers, ChildFund Community Manager
There’s good news in the fight against HIV/AIDS – treatment and prevention are working. People living with HIV are living longer and AIDS-related deaths are declining with access to antiretroviral therapy.
A new report by the Joint United Nations Programme on HIV/AIDS (UNAIDS) shows that 2011 was a game-changer for AIDS response with “unprecedented progress in science, political leadership and results.” The report also shows that new HIV infections and AIDS-related deaths have fallen to the lowest levels since the peak of the epidemic. New HIV infections were reduced by 21percent since 1997, and deaths from AIDS-related illnesses decreased by 21 percent since 2005.
In sum, treatment has averted 2.5 million deaths since 1995.
“Even in a very difficult financial crisis, countries are delivering results in the AIDS response,” says Michel Sidibé, executive director of UNAIDS. “We have seen a massive scale up in access to HIV treatment which has had a dramatic effect on the lives of people everywhere.”
According to UNAIDS and WHO estimates, 47 percent (6.6 million) of the estimated 14.2 million people eligible for treatment in low- and middle-income countries were accessing lifesaving antiretroviral therapy in 2010, an increase of 1.35 million since 2009.
The 2011 UNAIDS World AIDS Day Report also highlights that there are early signs that HIV treatment is having a significant impact on reducing the number of new HIV infections.
Yet, around the globe, there were an estimated 34 million people living with HIV in 2010. We must keep making progress, and U.S. international aid is one of the keys to that progress.
A new analysis by amfAR, the Foundation for AIDS Research details the potential human impact of proposed congressional cuts to the U.S. International Affairs Budget. According to the analysis, proposed cuts to global health investments would have minimal impact on U.S. deficit reduction over nine years but would have “devastating human impacts in terms of morbidity and mortality around the world.”
An estimated cut of 11.07 percent across the board in FY13 alone would result in
Those are sobering statistics to contemplate, especially coming on the heels of a year with tangible improvements in the HIV/AIDS epidemic.
On World AIDS Day, let’s resolve to keep moving forward. The goals are clear:
zero new infections, zero discrimination and zero AIDS-related deaths.
Read more about how ChildFund is helping reduce the impact of HIV/AIDS on children and youth.
by Wondwosen Hailu
Biruk had to supplement his needs by scavenging in Addis Ababa’s biggest garbage dumping site, located few hundred meters from his home. He was on the verge of dropping out of school.
New hope came to him through a local NGO called HAPCSO (Hiwot HIV/AIDS Prevention Care & Support Organization), which receives funding and technical support from ChildFund Ethiopia to assist orphans and vulnerable children impacted by HIV/AIDs. HAPCSO awarded Biruk a full scholarship, which enabled him to afford school materials and fees, and made him eligible for a dry food ration and a cash allowance of $100 birr per month.
His social life also took a new path when he joined the Scout Club, which he currently leads. The Scout Club provides children with life skills, counseling support and recreational activities. Club members play games and perform music and drama. They also learn skills needed to become successful team players. The club, which has 110 regular and 300 associate members from Kolfe Keranyo sub city in Addis Ababa, regularly conducts life skills and health training for children.
Through their performances, children and youth educate members of their community on the negative effects of stigma and discrimination associated with HIV/AIDS and promotes desirable behaviors. As a result of their activities, 70 iddirs (a form of indigenous social insurance for help members during bereavement) revised their bylaws to include an article on providing care and support to vulnerable children.
The Scout Club has been instrumental in turning Biruk’s life around. He continues to amaze the school community with his extraordinary work. For the last three years, he has been the top scorer in his class.
Biruk, who escaped a life of garbage scavenging, aspires to become a medical doctor. He wishes to save lives of Ethiopians who suffer from diseases.
Guest post by Arthur of Zambia
My name is Arthur and I am 15 years old. I am HIV-positive. I tested positive in December 2006. I live in Kafue District of Zambia with my parents, older sister and aunties, and I am enrolled in ChildFund programs.
World AIDS Day is a very important day for me as people the world over come together to show their support for those living with HIV. When AIDS was discovered in the early 1980s, all the people in the world were shocked and filled with fear. A lot of stories trying to explain the cause of this deadly disease were being told.
After much research was done it was discovered that this disease was caused by a virus called HIV, which attacks the human immune system and is found in human blood. It was also discovered that one can get the disease through sexual intercourse, and this caused a lot of stigma and discrimination to the people infected. Eventually, people began to realize that everyone could be affected, as a lot of people were dying from AIDS.
Many children were left orphaned, and people were losing friends and relatives. The world again realized that even if you were not infected you were affected and decided to come together to fight this deadly disease called AIDS. Other discoveries were made on the mode of transmission such as mother-to-child transmission.
To show world unity, people began to commemorate World AIDS Day in December 2000. This is one of the biggest days for people living with HIV because it helps them to feel recognized, accepted and supported. They are not excluded but included.
AIDS has widely spread through six continents and 54 African countries. With so many people affected, there is no reason for a negative attitude toward people who are infected.
World AIDS Day is a day to show love, care and support to people who are infected. Despite AIDS not being curable, medicines have been produced to boost one’s immune system and give hope for the future. If one is infected, it does not mean it’s the end of world. With ARVs (antiretroviral medications), one can live their life to the fullest.
World AIDS Day is a day when the infected and the affected can celebrate the end of stigma and discrimination and continue fighting the good fight of faith. One day, we will win.
ChildFund International’s commemoration of World AIDS Day continues with an interview with Ruth Nateleela, who is living with HIV/AIDS in Kireka, a township in south-central Uganda. She is receiving care and support from ChildFund and its program partners. Sheila Birungi, ChildFund Uganda project affiliate, conducted the interview.
Are you able to work, and, if so, what type of work do you do?
Yes, but right now I am not working since I have just given birth. However, before I was doing petty trade, selling charcoal and other consumables like tomatoes and onions.
Do you have children? How does this affect your outlook on the future?
I have four children. I know the future of myself and the children is bright because my child who is HIV-positive is taking ARVs (anti-retrovirals), and they told me that she can live as long as the drugs are taken well. I am also taking my drugs well. For the youngest child of three months, I was given PMTCT (prevention of mother to child transmission) capsules, and the doctors told me that that she will be fine.
How long have you lived with this disease?
I knew three years ago.
What education have you received?
I was first told that if you test your blood you will be able to know your status. After that, I went to ChildFund offices at the Kireka project and tested the first time. They told me that I was HIV positive and I did not believe, but I went to Mildmay Centre and they told me the same thing.
When I went, they told us on how to eat and about using condoms. They also told me to tell the doctors that I am pregnant since they have to take care of the baby such that she does not contract the disease.
How have ChildFund programs helped you?
ChildFund’s Kireka project is the one that gave me light on everything. I would be even dead by now if it was not for the project. They gave me access to the blood test. They also [referred] me to Mildmay, and now they are the ones who come to remind me on how to take my drugs. They have been giving food to my child for a long time — the one who is HIV-positive — and taking her to their centre to play. Mrs. Sseruwaji Nuru [home-based volunteer] is very instrumental to me. I ask God to bless her because she made me regain my life and I must say thank you to ChildFund.
As a person living with HIV/AIDS do you feel accepted? And do you feel safe?
Yes I am. Why are you shaking my hands? It’s because you do not discriminate against me, and I am not any differently treated in the community. I am so happy about life generally, and I don’t have any problem.
How is this disease affecting the community in which you live?
People are very sick, but the good thing is that now no one can laugh at any one with HIV. Actually, these days, people share a lot about the experiences, and they even direct each other to the service centres.
Do you thing HIV prevention, treatment, care and support is a critical part of human rights?
Yes, because we are all the same people in front of God. So if I have HIV, it does not mean that because you do not that there is a difference in terms of human rights.
What are your goals for the future? What are your dreams?
To have good family and to be able to bring up all my children and educate them all.
Any details you would like to share with others about HIV/AIDS and the people like you who have it?
I just want to tell them that HIV is real and to always test themselves because that’s the beginning of life. For my friends who have it, they need to care about themselves and this can only be done when you meet all the necessary people, like organizations, and make friends through telling them your status.
ChildFund International programs provide care and support to thousands of parents and children affected by HIV/AIDS. Our commemoration of World AIDS Day continues with an interview with Sseruwaji Nuru, a home-based care volunteer who is HIV-positive and working with others living with HIV/AIDS in the Kampala area. Sheila Birungi, a ChildFund Uganda project affiliate, conducted the interview.
How long have you been working with HIV/AIDS patients?
Since 2002 when ChildFund trained us as volunteers in home-based care (HBC).
How did you come to be in this field work?
We were selected by team of staff as the people to train in HBC, and I accepted.
What are your principal job responsibilities?
The major one is to keep confidentiality for our clients and also to [treat] all the clients as an individual. They are not the same and they should be treated in different ways. Recordkeeping is also another thing to keep in control because we are handling a lot of information, especially on adherence to ARVs (anti-retroviral drugs). And we, therefore, have to stress the times when the drugs are taken and the progress.
Where do you work?
I see the patients at the home and make sure that they get the drugs they have to receive.
What is your case load?
I have up to 28 clients; however, in every month the numbers have to change because of the different migrations out of most of the members. On the days I work, I see about four patients every day, especially if I do not have a lot of my own work. On a weekly basis, I can have 8 to 10 of them.
What is your key area in working with someone with HIV/AIDS?
Disclosure first. Stigma reduction. Nutrition and adherence to ARVs.
What are the day-to-day lives like for the patients with HIV/AIDS?
They have time for joy and they can be sorrowful at times. The work they do depends on how well they are, and they can sometimes be rude to the family member. The time without good meals is very bad, especially because of the drugs they take. Sometimes the day can be bad if they have demands for money, for example, house rent and other domestic needs for their families and also school fees.
What progress have you seen with HIV/AIDS prevention and treatment since you’ve been working in this area?
People are no longer stigmatized, and they are positively living with it. Many people are now able to live longer and with healthy families. Also, the installation of hope in whatever they are doing.
Are people better educated in prevention than before?
Yes, and very much better lives realized.
by Naomi Njoki Nyaga as told to ChildFund Kenya
To commemorate World AIDS Day on Dec. 1, Naomi, who lives in the Kiambu District of Kenya’s Central Province, agreed to share her story. Today, we continue with part two of Naomi’s story of living with HIV/AIDS. This year’s theme for World AIDS Day is Universal Access and Human Rights.
With time, I made up my mind not to sit and wait for people to come and sympathize with me, but rather find a way to earn a living. Besides working hard on my farm, I started cooking food and hawking it at construction sites and market places. Since then, my children have not lacked life’s basic essentials. I recently bought a dairy cow, which supplies us
with milk for use at home and the little surplus is sold.
Having gone through tough times, I resolved to go out in the community and help many people with the same challenges learn how to cope with their conditions. I want to see them come out of denial and self-hate and be the best they can be. That has become the mission of my life.
When I expressed this desire to Kihara Widows CBO officials, they were excited about it. They asked me to join them as a member of Kihara Widows CBO, where I would be better placed to reach more others. Through ChildFund WSN (Weaving the Safety Net) program, I received training as a Community-Based Worker. I identified five clients who were completely bedridden and in dire need of support in form of home-based care.
Braved Ridicule and Objection
One case I will never forget is of a lady who had literally been abandoned by her family and left to die. Her children had been clandestinely taken to live with a relative who lived a long distance from her home. Her relatives went every morning and evening to check whether she had died. Before that could happen, I got wind of it, and swiftly went to rescue her. I braved ridicule and objection from her relatives. I was not about to see another soul die when I could help. When she regained her health, I helped reunite her with her children. She is now a very successful business woman and a Community Based Worker just like me.
I have joined hands with many other like-minded groups who have a passion and commitment to not only helping people living with HIV/AIDS (PLWHA) but also assisting the community to accept rather than stigmatize and discriminate people in such conditions. I strive to sensitize the community to provide a favorable environment for those infected or affected by HIV/AIDS so as to enable us live life to its fullness without putting barriers to our ambitions.
Accepting My Condition and Choosing to Live Positively
I have received further training in Community Health Work through the Ministry of Health. I also represent Kihara Widows in the Constituency AIDS Control Committee (CACC) in the location, and work very closely with Kihara Health Center as a patient trainer, having received training for the same through the International Center for Aids Care and Treatment Program (ICAP). I am often called upon to give motivational talks at churches, chiefs’ barazas [meeting places], schools and other social gatherings. Accepting my condition and choosing to live positively have not only enabled me regain my self worth, but I’m also able to instill the same to others with confidence.
Now I realize I have a purpose to live. My family is happy. We are progressing well in life. My firstborn son who is 19 is currently sitting for his final examination in high school. The sister who follows him is 15 and in form two. My 10-year-old son is in standard three, while the last born girl is 5 years attending nursery school [Early Childhood Development Center]. I have disclosed to my three older children and made them know that, their youngest sister and I are HIV positive. They have accepted our status and are very keen to ensure we adhere to our daily medication.
I do not see my life as being abnormal in any way nor do I allow myself to be affected by what insensitive people say about me or my children. I urge everyone to know their HIV status. Testing positive to HIV/AIDS does not translate to death. I am a living proof — it is possible to come out of self-stigma, overcome stigma from without and live a full life.
Healing begins from within.
Tomorrow: The story of a HIV/AIDS home-based care volunteer in Uganda.