Children

Suhaila Msham Mwarimwana is 19 years old and lives in Zanzibar City. She was born with HIV and lost both parents before she was nine. But, despite the difficulties she faces, she is an inspiration for other adolescents and children living with HIV. 

“When I was about 12, I overheard neighbours saying I was HIV-positive. So I asked my oldest sister and she told me I had a bone-related disease,” she says. “But I sensed this was not the truth, so after some time I insisted and she took me to the Zanzibar Association of People Living with HIV/AIDS and I discovered my HIV status.”

Ms Msham Mwarimwana says her first thought was for her youngest brother, who also tested HIV-positive. She felt hopeless and desperate. “I thought HIV was a death sentence,” she says.

At a Zanzibar Association of People Living with HIV/AIDS (ZAPHA+) children’s club, Ms Msham Mwarimwana was given information and advice on how to live positively with HIV. She started HIV treatment and has stuck to the regime since, despite a lack of adequate nutrition, which she says makes adherence difficult.

After she finished secondary school she began volunteering for ZAPHA+. She facilitates clubs for children and adolescents. “We exchange ideas, share our challenges and advise one another,” she says. Her only wish is that the club had more space and was able to provide refreshments, particularly for the younger children. “We stay there and talk for a long time!” she says.

She is also a member of the Young Reporter Network, a national consortium of community-based children’s radio projects that reaches millions of listeners. She and other young reporters produce a 30-minute programme each fortnight, using audio diaries, commentaries and interviews to share their stories.

Ms Msham Mwarimwana has big dreams and plans to study journalism. She is proud of her contribution to the AIDS response in her country. “My role towards getting to zero—zero new HIV infections, zero discrimination and zero AIDS-related deaths—is to get my story heard to confront stigma and discrimination and draw attention to community issues that affect children and youth,” she says.

Looking back, Ms Msham Mwarimwana says she would have liked her parents to tell her she was HIV-positive. She says it is very important for children to know their HIV status. “I could have started my treatment even earlier,” she says. “Parents of HIV-positive children need to educate society that HIV can affect anyone and there is no shame.”

She believes that AIDS-related illnesses are a leading cause of death among adolescents in eastern and southern Africa because many adolescents are unaware of their HIV status and do not know that there are life-saving treatment and support structures available to them. “ZAPHA+ is my second home,” she says. “I am so thankful for the support I have received there.”

She has a simple message for her peers. “Accept and be open about your HIV status, be confident and believe in yourself.” 

UNAIDS has been supporting ZAPHA+ since its establishment through financial and technical support. UNAIDS supports the ZAPHA+ Secretariat to coordinate its activities in the 10 district clusters to ensure meaningful participation of ZAPHA+ in the development, implementation and review of the United Nations Joint HIV Plan in Zanzibar. UNAIDS also supports its resource mobilization efforts. Other United Nations agencies are closely engaged, in particular the United Nations Children’s Fund.

Mahabad Asanova’s first daughter was found to be living with HIV after being rushed to hospital with a high fever. For her second pregnancy, Ms Asanova had to wait 18 months before finding out that her son was HIV-negative.

By the time of her third pregnancy, however, things had changed dramatically. Within a month of her birth, Ms Asanova had been told that her daughter was HIV-negative. A revolutionary method of HIV testing of infants, dried blood spot (DBS) testing, had by then been introduced, significantly cutting the time for diagnosis.

“Waiting 18 months to know about the HIV status of my child was terrible,” Ms Asanova said. “I’m so relieved—dried blood spot testing completely changed my life.” Before DBS, children had to wait a year or more to be tested.

DBS is simple: no sophisticated equipment or invasive testing methods are needed. After a prick on the newborn’s heel, a drop of blood is collected on filter paper and dried. The sample is sent to a laboratory for testing and the results are known before the infant is a month old, allowing infants living with HIV to be treated immediately with life-saving antiretroviral medicines.

“Before dried blood spot testing was widely introduced in 2013 in Kyrgyzstan, only around 15% of infants were diagnosed early,” said Edil Tilekov, HIV Programme Officer for the United Nations Children’s Fund (UNICEF). “In 2017, that figure grew to nearly 90%.”

Today, HIV science and diagnostics are becoming ever-more sophisticated. UNICEF is promoting point-of-care HIV diagnostic methods for infants that would yield an HIV diagnosis a mere two hours after collecting blood.

The introduction of DBS and improved training for doctors has helped to defuse some of the stigma against people living with HIV.

“Stigma among medical staff began to decrease as antiretroviral medicines were integrated into the primary health-care system,” Elmira Narmatova, Director of the Osh Oblast AIDS Centre, said. “It became more like a chronic disease, mortality declined.”

Children who are treated early fare better and the more the medicines work, the more confident parents become. Today, in part as a result of DBS, more than 95% of children living with HIV in Osh, Kyrgyzstan, access antiretroviral therapy.

Yet pockets of resistance remain. Despite early diagnosis, not all infants receive the medicines they need. “We are interviewing parents and medical staff to find out why some parents still don’t want to give their infants antiretroviral medicines,” said Mr Tilekov.

Informal conversations already provide clues: resistance may be due to religion, to scepticism about immunization or even to urban myths.

“Although much has been done to provide parents with information and train medical staff, there is still a lack of resources and trained personnel, so some parents will slip through the net and might not be briefed properly about side-effects,” said Mr Tilekov. “So, if their infants lose weight or don’t eat well after starting antiretroviral therapy, parents blame the medicines.”

When an infant or mother is tested for HIV in Osh, the laboratory sends the results to the Osh AIDS Centre, a pleasant house set among trees in a leafy suburb, its gates open in welcome. The hallways are decorated with images of the popular Vitaminka fairy tale, a comic strip that helps health workers and parents explain to children the importance of taking their antiretroviral medicines regularly.

By providing child-friendly spaces and psychosocial support in addition to medical treatment, the centre makes parents feel welcome and encourages them to visit, pick up prescribed medication and get tested regularly.

The centre, upgraded by the Ministry of Health together with UNICEF and UNAIDS with support from the Government of the Russian Federation, now treats more than 200 children and a psychologist provides psychosocial support to children living with HIV.

Away from social pressures and among friends, parents can exchange hopes for the future and find much needed support at the centre.

Ms Asanova looks relaxed as her fingertips touch across her lap, her olive-green dress contrasting with her cream-coloured hijab. Mahabad Asanova isn’t her real name, since she still worries about stigma and discrimination beyond the centre’s walls. But she isn’t afraid anymore, even though she is now expecting another child. Whatever happens, thanks to DBS, she will no longer face painful months of waiting for a diagnosis.

New report highlights urgent need for an improved HIV response for children and adolescents

ABIDJAN/DAKAR/NEW YORK/GENEVA, 5 December 2017 – More than four decades into the HIV epidemic, four in five children living with HIV in West and Central Africa are still not receiving life-saving antiretroviral therapy, and AIDS-related deaths among adolescents aged 15-19 are on the rise, according to a new report released today.

While acknowledging progress in several areas, the report Step Up the Pace: Towards an AIDS-free generation in West and Central Africa, jointly published by UNICEF and UNAIDS, shows that West and Central Africa is lagging behind on nearly every measure of HIV prevention, treatment and care programmes for children and adolescents. In 2016, an estimated 60,000 children were newly infected with HIV in West and Central Africa.

“It is tragic that so many children and adolescents today are not receiving the treatment they need just because they have not been tested,” said Marie-Pierre Poirier, UNICEF’s West and Central Africa Regional Director. “We need to make better use of innovations to increase early diagnosis and improve access to HIV treatment and care for children. For example, the point-of-care technology diagnostic brings testing closer to where children attend health services and self-testing can be a good option for adolescents who may be more comfortable with it.”

The region’s coverage of life-saving antiretroviral therapy among children living with HIV is the lowest in the world because many countries have limited capacity to perform the tests needed for early infant diagnosis of HIV. Without knowing a child’s HIV status, his or her family is less likely to seek the treatment that could prevent the tragedy of a child’s death from AIDS-related illnesses.

The situation is worse among adolescents. The annual number of new HIV infections among those aged 15–19 years in the region now exceeds that of children aged 0-14 years. These new infections occur mostly through unprotected sexual contact and among adolescent girls. Equally concerning, according to the report, is that West and Central Africa has recorded a 35 per cent increase in the annual number of AIDS-related deaths among adolescents aged 15-19 years — the only age group in which the number of AIDS-related deaths increased between 2010 and 2016.

With the region’s youth population expected to grow significantly within the coming decades, especially in countries like the Democratic Republic of the Congo and Nigeria, the numbers of children and adolescents becoming infected with HIV and dying from AIDS is likely to remain high, unless the HIV response – both prevention and treatment – improves dramatically.

The report highlights that the 24 countries that make up the West and Central Africa region are home to 25 per cent of children aged 0–14 years living with HIV worldwide.

“Leaders of the region have endorsed a Catch-Up plan aiming to triple the number of people on treatment in the region – including children – by the end of 2018, the key issue now is to accelerate implementation,” said Luiz Loures, UNAIDS Deputy Executive Director. “Countries should urgently put in place more effective strategies for early infant diagnosis of HIV, and start reducing inequity in children’s access to treatment.”

The report proposes key strategies that will enable countries to accelerate progress in curbing the spread of disease. These include:

1. A differentiated HIV response focusing on unique epidemiological and local contexts in each country and community.
2. The integration of HIV services into key social services including health, education and protection.
3. Community ownership and local governance of the HIV response including working with families, better placed to help reduce stigma, access prevention and treatment.
4. Investment in innovations to remove barriers to scale-up including new diagnostic and biomedical approaches such as point of care diagnostics, HIV self-testing and pre-exposure prophylaxis.

UNICEF announced last week that at the current pace of progress, the global 2020 Super-Fast-Track targets to end AIDS among children will not be achieved.

***

Key facts from the report:

• Prevention of mother-to-child transmission of HIV coverage has increased 2.5-fold between 2010 and 2016 (from 21 per cent to 49 per cent), with some countries such as Benin, Burkina Faso and Cabo Verde now providing these services to more than 80 per cent of the pregnant women living with HIV.
• West and Central Africa has the lowest paediatric antiretroviral treatment coverage in the world, with only 21 per cent of the 540,000 children (0-14) living with HIV receiving antiretroviral treatment in 2016 – compared to 43 per cent globally.
• Today, West and Central Africa accounts for 37 per cent of the world’s AIDS-related deaths among children: about 43,000 AIDS-related deaths occurred among children in West and Central Africa in 2016, a decrease of 31 per cent compared to 2010.
• There were 62,000 adolescents (15-19) newly infected with HIV in 2016, unchanged compared to 2010.

• Adolescent girls and young women continue to be the most affected, with women making up nearly three out of five of all adolescents aged 10-19 years living with HIV across West and Central Africa.

Note to editors:

The Report is available at: https://www.unicef.org/publications/index_101480.html

More information is available at: www.childrenandaids.org

About UNICEF

UNICEF works in some of the world’s toughest places, to reach the world’s most disadvantaged children. Across 190 countries and territories, we work for every child, everywhere, to build a better world for everyone. For more information about UNICEF and its work for children, visit www.unicef.org

About UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube. For more information about UNAIDS and its work, visit www.unaids.org   

On 17 November, leaders from national and international organizations met in Vatican City to address concerns about securing early testing and treatment for children and adolescents living with HIV.

The meeting brought together leaders of major pharmaceutical and medical technology companies, multilateral organizations, donors, governments and organizations providing or supporting services for children living with HIV for a high-level dialogue.

The consultation saw a discussion on how to reduce illness and deaths among children living with HIV, particularly by accelerating the development and introduction of priority paediatric formulations of antiretroviral medicines. In contrast to the development of better antiretroviral medicines for adults living with HIV over the past 20 years, there have been very few new optimal medicines made available for children. Existing paediatric antiretroviral medicines are often bitter tasting, difficult to administer and inappropriate for low-resource settings.

In 2016, among the 2.1 million children aged 0–14 years living with HIV, 43% were accessing antiretroviral therapy, compared to 54% of adults living with HIV. The lack of suitable antiretroviral medicines for children has contributed in part to low levels of treatment initiation, retention in care and viral load suppression.

The participants made proposals to speed up the research, development, approval, introduction and uptake of medicines and formulations for infants, children and adolescents. These included steps to make priority medicines in the pipeline quickly available in the short term and innovative mechanisms to facilitate and accelerate the development of paediatric formulations for HIV and other life-threatening diseases over the longer term. 

The meeting was convened by Peter Kodwo Appiah Turkson, Cardinal and Prefect of the Dicastery for Promoting Integral Human Development, with the United States President’s Emergency Plan for AIDS Relief, UNAIDS and Caritas Internationalis, in close collaboration with the World Council of Churches–Ecumenical Advocacy Alliance (WCC–EAA), the World Health Organization and the Elizabeth Glaser Pediatric AIDS Foundation.

Naomi Watts, UNAIDS Goodwill Ambassador, visited Nyumbani Children’s Home in Kenya on 11 July to learn about Kenya’s prevention of mother-to-child transmission of HIV programme and the work done in the home to care for children living with HIV.

In the space of just a few years, as the result of a strong partnership between political leadership, programme implementers and the community, new HIV infections among children aged 0–14 years in Kenya have fallen from 12 000 in 2013 to 6600 in 2015. In June, under the leadership of the First Lady, Margaret Kenyatta, Kenya launched a new framework to accelerate the country’s efforts towards elimination of mother-to-child transmission of HIV and syphilis. The framework calls for the elimination of stigma and discrimination and the creation of an environment that empowers women living with HIV.

Nyumbani Children’s Home opened in 1992 and is currently home to 124 children living with HIV. The home provides nutritional, medical, psychosocial and spiritual care to the children and to the surrounding community, providing a place of safety in Nairobi for abandoned children living with HIV. In addition, the organization has a community- based programme that supports more than 3100 children living with HIV who reside in the informal settlements of Nairobi and 1000 orphans in Nyumbani villages.

Mss Watts and her two sons visited several facilities in the home, including its state-of-art laboratory equipped to undertake early infant diagnosis and viral load testing. Ms Watts congratulated Nyumbani Children’s Home for the impact it makes on a daily basis in the lives of so many remarkable and empowered children. She committed to continue to create awareness of the need to ensure that children living with HIV remain AIDS-free. 

Latin American and Caribbean countries have adopted the Santiago Commitment to Action for the Implementation of the Global Strategy for Women’s, Children’s and Adolescent’s Health. The Santiago Commitment to Action, which was adopted at the Every Woman, Every Child, Every Adolescent meeting held in Santiago de Chile from 2 to 4 July, saw the countries agree to work to end all preventable deaths, including AIDS-related deaths of women, children and adolescents by 2030, and to develop effective initiatives to ensuring their well-being.

The meeting, hosted by the President of Chile, Michelle Bachelet, saw regional ministers of health and social development and other experts come together. They discussed strategies to reduce inequalities and teenage pregnancy and to promote quality sexual and reproductive health and rights and HIV prevention and care.

The participants recognized that the health of women, children and adolescents is critically important to almost every area of human development and progress, and directly affects the achievement of the Sustainable Development Goals. The participants warned that inequalities affect and worsen overall health in society and represent the greatest threat to regional development.

With the Santiago Commitment to Action, participants agreed to strengthen universal access to health, including HIV-related services, with a human rights and life-cycle approach. They also agreed to develop an integrated programme for women, children and adolescents that guarantees access to HIV services and promotes cooperation and multisectoral actions within and between countries.

The meeting was also an opportunity to formally present the new coordinating mechanism for the Every Woman Every Child Global Strategy for Women’s, Children’s and Adolescents’ Health in the context of Latin America and the Caribbean, which unites seven organizations under the name Every Woman Every Child Latin America and the Caribbean. This initiative leverages the work done by A Promise Renewed for the Americas, which has transitioned to become the regional interagency coordination mechanism for the Every Woman Every Child Global Strategy.