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DECEMBER 2017 GLOBALCAUSE.CO.UK READ Michel Sidibé: why we need to quicken our pace to end AIDS P2
INSIDE Do you know what living with HIV is really like? P10
ONLINE Professor Kevin Fenton,
Public Health England
Prince Harry empowers the next generation to end AIDS Read insight from Prince Harry, CoFounding Patron of Sentebale, the Prince’s foundation for children in Africa P14
Sir Elton John ‘Ending AIDS is possible’ The game changers for the end of the epidemic P10
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SIR ELTON JOHN AND PRINCE HARRY INTERVIEWED ABOUT HIV/AIDS BY CHILDREN’S RADIO FOUNDATION AT THE INTERNATIONAL AIDS CONFERENCE, DURBAN 2016
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IN THIS ISSUE
Midwife’s account of battling against stigma. HIV-positive parents are refused care for their newborn baby P8
More stories on screening, preventative therapy and early treatment and how we can challenge HIV-related stigma, myths and discrimination
Loyce Maturu shares her experience: Supporter and Youth Ambassador turns her personal tragedy into global support P15
Why we need to quicken our pace to end AIDS Now is not the time to be complacent in the fight against HIV says Michel Sidibé, Executive Director of UNAIDS — the Joint United Nations Programme on HIV/AIDS.
reat strides have been cent increase in new HIV infections and looking at some of the challenges changed the nature of HIV. An made in the response to — and almost a 38 per cent increase in faced by people living with and affect- HIV-positive 20-year-old who is HIV over the last 15 years. AIDS-related deaths — since 2010. And ed by HIV. For example, worryingly, not receiving treatment has a life There has been an accel- while today, 70 per cent of all people one in five people living with HIV say expectancy of 29; whereas, with eration in HIV screening, preventive living with HIV know their HIV status they have faced discrimination in a treatment, that same person would have a normal life expectancy. Eartherapy and early treatment and a and 53 per cent have access to treathealthcare setting. breakthrough in antiretroviral thera- ment, western and central Africa lags To combat stigma and discrimi- ly detection and treatment can also py, management and comprehensive worryingly behind. nation, it’s critical to start involving reduce deaths from co-infection. long-term care. Also, AIDS-related Globally, there are 36.7 million peoand educating communities so that This is important because tuberdeaths have fallen by 48 per cent since ple living with HIV and 1.8 million knowledge, skills and competencies culosis remains the leading cause the peak of the epidemic in 2005, so new infections every year. This cannot can be effectively transferred. There- of death among people living with there may be a temptation to feel that be ignored. fore, we are calling for a network of HIV, accounting for around one in the threat has gone away and that two million community health work- three AIDS-related deaths. Michel Sidibé Be alert to complacency So, today of all days, I want to AIDS is over. ers across Africa by 2020. They will Executive Director, UNAIDS But the threat has not gone away. The greatest threat we face now is ensure that people receive early HIV stress that everyone has the right And AIDS is most definitely not over. complacency. We must not lose our testing and treatment services and to health and the right to access HIV TRIALS NETWORK Abbreviated usage, Website andreference Print HIV NETWORK Abbreviated Style Guide for HVTNpeople’s Logo usage, Website and Print materials.HIV services, including the marIn VACCINE fact, it is still heartbreakingly evi-VACCINE sense of TRIALS urgency when it comes to Style Guide reference for HVTN Logo canmaterials. change perspective about Graphic elements should be void of gradientsGraphic or drop elements shadows should (“flat” design). be void of (“flat” design). dent in every part of the worldBRAND and in ginalised and most vulnerable in responding to HIV. Indeed, we must what itgradients meansortodrop be shadows HIV positive. BRAND GUIDELINES GUIDELINES For questions, please contact the HVTN Communications firstname.lastname@example.org. For questions,Unit, please contact the HVTN Communications Unit, email@example.com. some places instances are increasing. society. By reaching people most quicken our pace so that organisa2017 2017 Early detection and affected by HIV we can end this tions, businesses and communities AIDS increasing in Eastern treatment can reduce epidemic. work better together to save more Europe and Central Asia AIDS-related deaths We have achieved so much. Now lives. Take Eastern Early diagnosis is key because, we need to go the extra mile and On this year’s World AIDSLOGO Day,WEB we PRIMARY LOGOEurope and Central LOGO VARIATIONS T YPOGRAPHY PRIMARY LOGO VARIATIONS WEB T YPOGRAPHY Asia, which has recorded a 60 per are highlighting the right to health today, treatment has completely end AIDS.
“An HIV positive 20-year-old who is not receiving treatment has a life expectancy of 29”
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The HVTN recognizes the importance of public support in finding a vaccine against HIV/ AIDS. Staff and volunteers from around the globe work actively to help community members understand the science of HIV/AIDS vaccines, as well as research methods and clinical trial processes. Dr. Glenda Gray, HVTN co-pi and director of HVTN Africa Programs highlights “We recognize the importance of community stakeholders in developing improved approaches to HIV-1 prevention.”
The HVTN is known for its collaborations from a diverse set of stakeholders. It has established both a clinical trial and laboratory platform for the independent evaluation of candidate HIV vaccines, and allowing for reliable assessments across trials, setting statistical standards for the field, and actively engaging with over 40 site communities on
MUSEO SLAB FONT MUSEO SLAB FONT AaBb AaBb AaBb five continents.AaBb These achievements have allowed the HVTN to conduct over 80 clinical trials and make numerous scientific contributions to the field. Body Text/Link  Body Text/Link  CcDd CcDd CcDd “Currently weCcDd are in the midst of an unprecedented time in HIV vaccine research:
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Photo: Part of the sample transport network in Uganda.
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World Health Organization guidelines reinforce role of CD4 cell counting in immunecompromised patients
PHOTO: CHARLES KIYAGA, NATIONAL COORDINATOR FOR UNHLS, MINISTRY OF HEALTH, KAMPALA, UGANDA
The challenge for clinicians monitoring the health of those living with HIV is not just to treat them with antiviral therapies – but to understand exactly how far their immune system has been compromised. Otherwise, they become susceptible to additional lifethreatening, opportunistic diseases.
t is now standard practice to offer HIV testing, and put patients onto antiretroviral therapies as soon as they receive a positive diagnosis, not only prolonging but also enhancing the quality of their lives. However, if the patient already has advanced HIV disease, and a compromised immune system, they may also need additional interventions to treat diseases such as tuberculosis taking hold. It is therefore critical that the doctor has a way of identifying how immune compromised the patient is. Once a person is infected with HIV, the virus begins to attack and destroy a special type of white blood cell, called CD4. These cells play a major role in protecting the body from infection. Counting the number of CD4 cells in a patient’s blood is the most accurate way of monitoring how well the immune system is working and predicting the progression of HIV. To reinforce this, the World Health Organization (WHO)* has taken steps to explain the importance of counting these cells by issuing three new guidelines which encourage best practice, explaining under which circumstances it is essential to know a patient’s cell count as well as their viral load. “Up to 30 per cent of patients coming in have advanced HIV disease, which means their CD4 cell count is below 200,” explains Debi Boeras, CEO of The Global Health Impact Group, an organization that brings together key partners to integrate
diagnostics and care. “These individuals are likely to be really sick and susceptible to cryptococcal meningitis, TB and other infections that HIV opens you up to.” Accurate and early diagnosis ensures that patients are put on an advanced package of care, also preventing other potentially fatal outcomes. As Tom Chiller, Chief of the Mycotic Diseases branch at the Centres for Disease Control and Prevention, explains, “If you put someone on antiretroviral therapy and you don’t know their CD4 count and the degree to which their immune system is compromised, they could develop IRIS - immune reconstitution inflammatory syndrome – from which they can die.”
CD4 helps identify those patients that are at risk For advanced disease, clinical observation alone does not provide an accurate assessment of a patient’s health. Many people with a low CD4 count can look well, but their immune system may already be severely compromised. Viral load testing – measuring the amount of HIV in the blood – now enables the clinician to monitor the patient’s ongoing response to HIV treatment. However, before they start or restart antiretroviral therapy, it is still important to know the patient’s CD4 cell count. “What was happening was countries were scaling back CD4 and ramping up viral load monitoring, and in the process some countries weren’t doing CD4 cell count testing at all,” explains Ben Cheng, a
specialist consultant who works with a range of partners to develop technologies to aid treatment and diagnosis of HIV. “There are some countries that have a fantastically well run CD4 network. In South Africa they have about 64 CD4 labs and the samples come in and are processed very quickly. That type of system can work fantastically well, but only if you set it up and have the money to run it and maintain it,” continues Chiller.
Improving the infrastructure in rural communities What is needed is for ministries of health to be able to coordinate CD4 cell count testing on a national scale. However, the majority of countries still don’t have the infrastructure, transport or technology to effectively manage the collection, storage and transportation of the blood once the sample has been taken. In addition, they lack a coordinated reporting process to communicate the test results back to patients and clinics in an efficient and timely manner. The fragmented nature of the transport systems in hard to reach, rural communities also makes it difficult to deliver the necessary diagnostic equipment and the replacement parts and supplies needed to keep the service running. Despite advances in the quality and accuracy of the actual diagnostic tests themselves that are available for near-patient testing, local healthcare communities face a significant financial and logistical burden to manage and maintain them.
Further, with a rapid turnover of the people in the healthcare teams, it’s often difficult to maintain the services that are already being provided in rural clinics. But change is taking place. What is now being developed is an IT infra-structure that supports remote testing in rural areas, so that standards for quality, consistency and instrument maintenance can be monitored and managed. “One of the things we’ve been working on is connecting these point of care technologies up to a central server, so the ministry knows where the devices are, if they’re working and if they’re being used properly,” says Cheng. In addition, ministries of health are learning how to set up the efficient hospital laboratory blood testing services we take for granted in Western Europe.
What can be done to speed up the diagnostic pathway? “We’ve done a lot of work to ensure the quality of the diagnostics and that they are affordable and accessible in rural areas,” continues Boeras. “This is really promising, but once someone has been diagnosed, the same issues that prevented them from travelling to a lab to get tested in the first place, now prevent them from travelling to see a clinician or accessing treatment.” The longer it takes to link patients with treatment, the more likely they are to fall out of the system completely. “We have four key players: the patient, the clinician, the testing and the treatment,” says Boeras. “In
an ideal world we need to get them all into the same room. Bringing the testing together with the clinical support will help to engage people in the healthcare system.” The health of those with HIV depends on specialists from different disciplines working together with a single focus on patient care. “I hope that these new guidelines will advance and reinforce the importance of CD4 testing,” concludes Cheng. “We’re starting a consortium to try and help countries adopt and implement them as rapidly as they can and to get their package of care in place to help people with advanced disease. I hope it will result in decreased mortality and morbidity.” Jargon buster: CD4 T lymphocytes (CD4 cells) are a type of white blood cell in human blood that play a major role in protecting the body from infection. ––– SPONSORED CONTENT –––
*References For the role of CD4 in HIV analysis and patient management: • World Health Organization (2016): Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: recommendations for a public health approach – 2nd ed. • World Health Organization (2017): Guidelines for managing advanced HIV disease and rapid initiation of antiretroviral therapy. In addition, WHO published information notes that further define the role of CD4: • World Health Organization (2017): What’s new in treatment monitoring: Viral load and CD4 testing. Information Note WHO/HIV/2017.22.
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London 2017 NAT staff and supporters at Pride
PHOTO: MICHAEL CHERNAK © INTERNATIONAL HIV/AIDS ALLIANCE
How has treatment for HIV progressed over the 30 years of the epidemic? Q&A with Deborah Gold Treatment has progressed tremendously. We now have the tools we need to eradicate AIDS deaths and to stop, and begin to reverse, the spread of the epidemic. We even have a pill that can prevent HIV. Treatment technology has improved so that many people living with HIV experience no – or limited – side-effects.
What’s the prognosis for someone diagnosed nowadays with HIV? Now, if diagnosed early, someone with HIV can expect a normal lifespan and good health. However, the later the infection is diagnosed, the worse the health outcomes, and very late diagnoses is still linked to poor health and early death. People living with HIV face stigma at home, in public, at work or school and even in healthcare settings. There remain strong links between HIV and poor mental health and poverty; links that need to be broken. That’s why, this World AIDS Day, we are saying #LetsEndIt, focussing not only on ending HIV transmissions but also
the stigma and isolation all-too-often experienced by those with the diagnosis.
Is there anything more to do in HIV treatment research? There is a lot of potential in technologies such as long-acting antiretrovirals. This would allow patients to be relieved of the daily pill burden and, instead, be treated with injections, which are needed much less often. Less frequent treatment has the potential to improve adherence to treatment and early indications show that there is an appetite for this in patient groups. And of course, there is a continued need for research into an eventual cure for those already living with HIV.
What are treatment outcomes like in the UK? Treatment outcomes in the UK are among some of the best internationally, however people living with HIV face new frontiers. As the first generation reach old age, having survived HIV, they face a greater likelihood of co-morbidities and a social care system which is not yet familiar with HIV. There is
Deborah Gold Chief Executive, National AIDS Trust (NAT)
“If diagnosed early, someone with HIV can expect a normal lifespan and good health”
more work to do to support those in the social care system, and we are focusing on this at NAT. Good treatment outcomes need to be experienced by all communities, and we also focus on that as a priority. For example, our early research has shown that misgendering and low knowledge of trans people’s needs from healthcare workers has led to disengagement from care, and therefore poorer health outcomes. We need systemic change to improve the quality of care for trans people so that they are as able to access sexual health testing and treatment as anyone else.
Is HIV care only about antiretroviral medication, or is there more that is needed? We must go beyond seeing viral suppression as the be all and end all of HIV treatment. Of course, ensuring people living with HIV are virally suppressed is crucial for health outcomes and for prevention efforts. Viral suppression cannot, however, be seen in isolation from other factors of treatment and support.
This year, we released our report Why We Need HIV Support Services, which shed light on how HIV support services underpin and support medical treatment. Specialised support services provide interventions such as peer support, advice and information services and self-management education. Services like this are a lifeline to many people living with HIV. They are not just a bonus to add to clinical care, rather they mutually support and complement one another; 50 per cent of attendees at expert patient groups subsequently reported fewer GP visits. For an investment of £400 per attendee, there was an average net saving to the NHS for each patient with a long-term condition of £1,800. Despite the expertise developed over the past three decades and the cost-effectiveness of providing them, support services across the UK face significant funding cuts and many are closing. Read more on stopHIVcuts.org
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Undetectable = Untransmittable Effective antiretroviral treatment of HIV-positive individuals can lead to zero risk of transmitting the virus. Q&A with Professor Chlöe Orkin
What does ‘Undetectable equals Untransmittable’ mean? U=U refers to people living with HIV who are on effective antiretroviral (ARV) treatment with sustained undetectable levels of HIV virus in their blood who cannot transmit HIV to their sexual partners.
Should this change the way we think about HIV diagnosis and treatment? Because HIV treatment is now so effective, it’s all the more important that we maximise access to it by increasing testing to identify those in need. U=U should help reduce stigma around HIV by reassuring people that they will not pass on the virus.
What global research has been undertaken to support the claims of Undetectable equals Untransmittable? The most important study is the PARTNER study published in 2016. This is an international study looking at 1,166 couples where one was HIV-positive and on antiretroviral
treatment and who were already having sex without condoms. They found that in more than 58,000 acts of condomless sex there were no HIV transmissions from the HIV-positive partner among those on treatment with an undetectable viral load.
we should start treatment before the immune system becomes damaged, rather than waiting. In practice, treatment should start as soon as the person with HIV has the necessary information and feels ready.
What are the possible side effects of ARV Therapy?
What are the symptoms of HIV/AIDS that people need to look out for? When they first acquire the virus, some people experience mild, “flu-like” symptoms. However, most people with HIV do not get any symptoms for years until their immune system deteriorates. That’s one of the reasons it’s important for people to be offered testing even when they are well. As the immune system deteriorates symptoms range from increased infections like shingles to more serious illnesses like Non-Hodgkin’s Lymphoma.
Why is early diagnosis so important? Early diagnosis means that antiretroviral treatment can be started before the immune system deteriorates,
Professor Chlöe Orkin Chair, British HIV Association (BHIVA)
preventing HIV-associated illnesses. Often, HIV is transmitted by people who do not know they have the infection, so earlier diagnosis and treatment will reduce transmission. This is cost-saving in the long term.
What is the optimum window after detection for someone to start ARV Therapy? As soon as possible. The recent international START study showed that
People may get temporary side effects when starting new drugs such as nausea or diarrhoea, but these usually improve relatively quickly. Some drugs cause longerterm effects – such as bone thinning – so it is important that people are seen regularly in their clinic so that any signs of toxicity are spotted early and managed appropriately.
What other lifestyle changes will someone on ARV Therapy need to consider? With effective treatment, people are living well into old age so are more likely to get common age-related conditions such as coronary heart disease. Therefore, they should be registered with a GP and monitored at least every
six months in their HIV clinic. We encourage them to lead a healthy lifestyle with a varied diet, exercise, smoking cessation and to drink alcohol in moderation. Mental health is a vital part of wellbeing, so access to psychology and peer support are important.
What new advances in treatment for HIV are on the horizon? Research into HIV treatment is thriving and includes new drugs and ways to take them. For example, the FLAIR study is currently looking at whether monthly injectable medications are a viable option instead of taking tablets daily. Other advances are in HIV prevention include vaccines and pre-exposure prophylaxis – taking treatment when you do not have the infection, in order to prevent yourself from becoming infected with the virus. Read more on globalcause.co.uk
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Pro-active HIV testing launch Elton John and David Furnish with staff at the Caldecot Centre at Kings College Hospital, May 2016. Funded by The Elton John AIDS Foundation.
Gender-based violence puts LGBT communities at greater risk of HIV The Elton John AIDS Foundation has set up a multi-million dollar fund in order to combat stigma and human rights abuses against the LGBT community. It’s doing good — and saving lives. By Tony Greenway
tigma. Discrimination. Physical abuse. Around the world, people living with HIV experience human rights violations on a daily basis, particularly in most African countries where same-sex relationships are criminalised. Violence against transgender communities, meanwhile, is on the increase. UNAIDS reported that in 2017 alone, over 120,000 LGBT people were newly infected with HIV. At the same time thousands have died in transphobic and homophobic attacks, with stigma, discrimination and violence stopping LGBT people from getting the HIV prevention and care they need1.
Discrimination can slow progress Discrimination and violence towards LGBT people are barriers to ending
AIDS. Stigma, discrimination and human rights abuses only serve to increase instances of HIV, says Shaun Mellors, Director of Knowledge and Influence at the International HIV/ AIDS Alliance. “For example, if someone feels stigmatised or discriminated against at a clinic, they won’t feel comfortable about returning to access the appropriate HIV services, information and prevention commodities they need to protect themselves,” he says. “And if people are arrested for attending workshops on sexual orientation or gender diversity, it increases their vulnerability and makes them more hesitant to engage in activities around HIV and human rights.” As part of investing over $10m in improving HIV care for LGBT Africans, Elton John AIDS Foundation has set up a $4m emergency fund to make sure that LGBT people
Shaun Mellors Director, Knowledge and Influence, International HIV/AIDS Alliance
“In 2017 alone, over 120,000 LGBT people were newly infected with HIV”
and MSM (men who have sex with men) can access HIV services, regardless of the threats they face. The Fund to help members of the LGBT community in jeopardy, including grassroots organisations working with the most at-risk LGBT groups in Sub-Saharan Africa (such as Sexual Minorities Uganda and Gays and Lesbians of Zimbabwe). The International HIV AIDS Alliance is implementing this Rapid Response Fund sending smaller sums up to £20,000 for LGBT people who need help in the face of immediate threats.
Helping to demystify HIV The Rapid Response Fund (currently active in 30 countries) has received 921 applications to date, and has supported 115 projects to the value of $1.3million. More than 2,000 lesbians, gay, bisexual,
transgender and intersex people have received an HIV test as a result of a grant issued by the fund, while thousands more have benefitted from increased security. Funds such as these are so important says Mellors, as reducing discrimination could have a significant impact on HIV prevalence rates. “It would help demystify HIV,” says Mellors. “People would be more willing to disclose their HIV status and so access services and antiretroviral treatment. Ultimately, we want to get as many people living with HIV tested and linked to treatment and care, in order to improve their quality of life and drive prevention.”
Read more on globalcause.co.uk
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PHOTO©INTERNATIONAL AIDS SOCIETY/ABHI INDRARAJAN
The number of cases of HIV in the VUK is in decline After nearly four decades of struggling to control HIV, new research indicates that the UK is finally turning the tide on the epidemic. By Kate Sharma
esearch published by Public Health England last month, confirmed that, in London, not only are 97 per cent of people diagnosed with HIV now receiving treatment, but that treatment is having a direct impact on infection rates. Over the last 12 months, HIV test positivity rates among gay and bisexual men have fallen by 29 per cent.
Condoms, screening and early access to treatment prove key “The gains have been thanks to a combination of increased HIV testing and early access to effective HIV treatment, combined with the uptake of preventative measures like condoms, screening and treatment for STIs and PrEP (pre-exposure prophylaxis),” says Professor Kevin Fenton, National Director for Health and Wellbeing at Public Health England.
Over the past three decades, successive HIV/AIDS strategies in England have prioritised the importance of combining HIV prevention, testing and treatment as the key to ending the epidemic and vital lessons have been learned regarding the importance of timely intervention. More recent efforts to scale up HIV testing – by promoting greater access and more frequent testing among men who have sex with men (MSM) – combined with early access to HIV treatment have been central to the reduction of infection rates, as therapies suppress the virus to a point where it is undetectable in the blood and cannot be passed on.
Treatment needs to include psychological support “Another key lesson from our approach to tackling HIV is the importance of providing effective support services to people who are infected with HIV – including, where appropriate, services to address
Professor Kevin Fenton National Director for Health and Wellbeing, Public Health England
“In the UK, black and minority communities are disproportionately affected by HIV”
mental health, social care, substance abuse, housing, and managing other sexually-transmitted infections,” says Professor Fenton. “As we rightly focus on getting people on treatment it is also critical to maintain a ‘whole person approach’, identifying and meeting other needs, which – if unaddressed – can significantly worsen a person’s ability to live long and well with HIV.” Grassroots organsations and charities have played a vital role in connecting people with care; reaching out directly to vulnerable communities, linking them with centralised services, and providing advice and support on a day-to-day basis. As we look to increase access in the most at-risk populations, these community-based groups will be more important than ever.
Minority communities affected by HIV However, beyond the positive headline figures, there are concerning
statistics. “In the UK, we know black and minority communities are disproportionately affected by HIV, socio-economic disadvantage remains a key determinant of HIV inequalities, and there are regional differences in the progress being made. More work is needed to promote testing and early access to care, and to work with local partners to promote better awareness and enagagement,” says Professor Fenton. A key barrier that prevents people testing for HIV is stigma. Professor Fenton remains optimistic that the gains we have seen in London will be felt elsewhere in the UK. But, if we are to close the book on AIDS once and for all, we need to maintain momentum and commit to tackle HIV stigma, in all its forms, with renewed focus and passion. Read more on globalcause.co.uk
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INSPIRATION CREDIT: HEPSUMMIT2017 BY WHATEAM WHATEAM
Rita Momoh Midwife, Wellbeing Foundation Africa
Midwives must battle stigma
ita qualified as a midwife in 2012, having worked for a number of years as a nurse. She joined the Wellbeing Foundation Africa (WBFA) Mamacare team almost two years ago. Mamacare clinics were launched by Her Excellency Mrs Toyin Saraki, Founder of the Wellbeing Foundation Africa (WBFA), and have educated more than 200,000 mothers about birth and children’s health since their inception, nearly three years ago. The overall care of the mother and child is central to the philosophy of Mamacare, which means that – alongside safe birth, breastfeeding and care for the child – subjects such as drugs, domestic violence, sexual health, wellbeing and savings are also discussed. Mothers and their partners are educated about HIV by Mamacare midwives, who also train health workers. About 4.4 per cent of women attending antenatal clinics in Nigeria are infected with HIV. An increasing number of children are infected with the virus, through mother-to-child-transmission. Yet less than one per cent of pregnant mothers have access to counselling and testing services for HIV in Nigeria. According to UNAIDS’ latest estimates, about 240,000 children are living with HIV/AIDS in Nigeria.
HIV-positive parents’ baby refused care One expectant mother registered for Mamacare Antenatal Care (ANC) classes at Lugbe, Abuja, when she was five months pregnant. Both her and the father of the child were HIV-positive. Rita counselled the mother on four separate occasions, in a centre connected to a primary healthcare clinic, and ensured that appropriate medication was available for the baby. Medication was distributed to the nurses and Rita herself kept an appropriate supply at hand. The baby was delivered in a PHC clinic late one evening. Tragically, the baby was born with his intestines outside of his body. Rita was called by the nurses and drove the baby and her parents to different hospitals before finally being accepted in one. As HIV-positive parents, they were refused care and the surgery to save the baby’s life. Eventually, the following evening, thanks to persistence from Rita and sponsorship from the WBFA, the baby received surgery. That surgery came too late, however, to save the baby’s life. HIV-positive parents in Nigeria, Rita says, have to struggle against prejudice and stigma to get the treatment that they and their children need. In this case, that prejudice proved to be deadly. Education, delivered by Mamacare midwives and health workers across Nigeria, will be essential in reducing transmission and ensuring that mothers such as the ones Rita counsels are treated with respect and dignity.
Dr Gottfried Hirnschall World Health Organization (WHO) Director for HIV and Hepatitis
AIDS-related deaths have almost halved since 2005 By Kate Sharma The international community is optimistic that the ambitious goal to eliminate AIDS by 2030 will be met – but to achieve it we need renewed commitment to those most vulnerable.
In July, the global community convened in Paris to assess the most recent data on the HIV pandemic. UNAIDS (United Nations Programme on HIV/AIDS) and World Health Organization (WHO) figures showed that, for the first time, the scales have tipped: more than half of all people living with HIV, 53 per cent, now have access to HIV treatment and AIDS-related deaths have almost halved since 2005. More effective, cheaper treatment; improved access to testing – including self-testing kits – greater availability of antiretroviral treatment; better ongoing care/monitoring and a genuine global commitment to fight HIV have all contributed to outcomes.
A million people are still dying each year The optimism surrounding the figures is encouraging, but Dr Gottfried Hirnschall, Director for HIV and Hepatitis at the World Health Organization (WHO), adds a note of caution: “We need to remember that a million people are still dying each year and 15.8 million still in need of treatment. We won’t achieve the 2030 goal of eliminating AIDS if we simply continue with business as usual.” A global scale-up of the current services is important, but new solutions need to be found to address specific areas of concern, namely, HIV services for children and adolescents, better care for those with advanced HIV disease and access to testing, treatment and
prevention services for key populations.
discussions taking place right now.
HIV-related tuberculosis deaths are high
Increase in AIDS in Africa, Europe and Asia
In a bid to ramp up their HIV treatment programmes, many countries have not sufficiently addressed the comorbidities that often come with HIV. The need is pressing, as a third of all people who start antiretroviral therapy present with advanced HIV disease. “We know HIV and tuberculosis (TB) overlap and 390,000 people die each year from HIV-related TB in sub-Saharan Africa,” says Dr Hirnschall. “Cryptococcal meningitis is also a major cause of death – up to 15 per cent of AIDS-related deaths ¬– in Africa, South-East Asia, Latin America and the Caribbean.” Earlier and more strategic testing would certainly help address the problem, but Dr Hirnschall is also urging greater integration of HIV and health services, so support can be tailored around the unique needs of each individual as soon after diagnosis as possible.
Within the last year, research has also identified key geographical regions and populations where infection rates continue to rise. There has been insufficient scale-up of HIV services in West Central Africa, and in Eastern Europe and Central Asia. Here, treatment access remains low, and the rate of new infections continues to rise rapidly – with discrimination and stigma preventing keyLack populations receiving appropriate services. bine “Men who have sex with men, transgenderriers people, sex workers, people who inject drugs,in m and migrants continue to be excluded,” sayspeop Dr Hirnschall. “It’s not just a health issue,seek it’s a human rights issue. Unless stigma, dis-trea crimination, and exclusion are addressed, we H cannot end AIDS.” ViiV resp The end of AIDS Acti The challenges are certainly significant,poin but they are not insurmountable. Back inthat July, WHO reported that in six of elevento be countries surveyed in Africa, Latin Americaence and Asia, more than ten per cent of peoplesex. starting antiretroviral therapy had a strainiour of HIV that was resistant to some of theof co widely-used HIV medicines. “While this isrece not yet alarming, it has to be taken serious-viru ly. Drug resistance can largely be preventedmen - it needs to be monitored by countries, and “T we do have solutions, if indeed it occurs,– all substituting with new drugs,” says Drcond Hirnschall. to it The fact that we can respond confidently “A to the threat of resistance is a sign that thestag world has never been more equipped toemb respond to HIV. While we still have notabou found that elusive AIDS vaccine, we doposs have the knowledge and the tools to bringof ed an end to AIDS. cont
Over 50 per cent of HIV-positive children have no access to antiretrovirals Another group that needs specific attention is children and young people. WHO reports that only 43 per cent of children living with HIV are accessing antiretroviral treatment, and in 2016, 260,000 adolescents became infected with HIV. There are major issues that need to be addressed around early infant diagnosis, the development of more age-appropriate and child-friendly formulations and improved care for adolescents. Young people themselves have a powerful role to play in creating an AIDS-free future and it’s important they are part of the
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PHOTO: ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION, PEER SUPPORT GROUP HOMA BAY
PHOTO: ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION, GIRL EMPOWERMENT PROGRAM EVENT, MAMA COUNTY
Stigma means too many adolescents go untreated for HIV/AIDS There are more than two million adolescents living with HIV globally, according to UN figures for 2012, yet, sadly, the age group between children and adults is often underserved. By Sean Hargrave SPONSORED
Lack of widespread education, combined with cultural and religious barriers, mean HIV/AIDS is still a taboo in many communities, discouraging people aged between 10 to 19 from seeking tests and, if necessary, treatment. Helen McDowell is responsible for ViiV Healthcare’s corporate social responsibility programme, Positive Action for Adolescents. McDowell points out that this age group is at that stage of life when they are likely to begin striving for more independence and becoming curious about sex. They may be engaging in behaviour that could increase their risk of contracting HIV, yet they are not receiving guidance in avoiding the virus or may not be receiving treatment if they have the virus. “There are barriers to young people – all over the world – talking about a condition that has a stigma attached to it,” she says. “Adolescents are at a vulnerable stage in their lives when they are embarrassed about talking to parents about their curiosity around sex – and possibly drugs – and so we have a lack of education about the risk factors for contracting HIV.”
Encouraging young people to brave the stigma attached to HIV in many communities is vital. In Kenya, according to Ministry of Health, more than half of all new cases diagnosed were among people aged 15 to 24 in 2015. Natella Rakhmanina, says, “My heart breaks when I see an adolescent present with advanced HIV symptoms because it’s often too late for us to be able to offer as much effective help as if they’d sought a diagnosis and treatment earlier.”
Peer support is crucial McDowell points out that, even if an adolescent can talk to an adult family member about being taken for an HIV test, there are still major obstacles to them staying on a treatment plan. “There is a lot of work that needs to be done to build healthcare systems that cater for adolescents because they’re clearly not children, but they’re not adults either,” she says. “It’s not only a case of breaking down the stigma but also some fairly straightforward things, such as offering clinics for their age group that are timed to fit in with school and educating healthcare staff to be non-judgemental about younger teenagers who may have contracted the condition through sex is also crucial. “One of the key tools in keeping adolescents on treatment programmes is offering someone of their own age they can talk to and confide in.”
Red Carpet Programme With support from ViiV Healthcare’s Positive Action for Adolescents Programme, EGPAF began spearheading
six months, just 54 per cent. Under the RCP, retention in care rates has risen to 90 percent at three months and nearly 99 per cent at six months. The challenge now is to see if this progress can be maintained and scaled up in other areas with high rates of adolescent HIV epidemic.
Listening is key
Natella Rakhmanina Senior Technical Advisor, Elizabeth Glaser Pediatric Aids Foundation and Professor of Pediatrics, George Washington University
Helen McDowell Director of Government Affairs, Access and Patient Advocacy and Director of Positive Action for Adolescents
a project that seeks to overcome many of the hurdles in linking with newly-diagnosed HIV-positive adolescents and young people with care and treatment programmes and support. The Red Carpet Programme (RCP) times services around school hours and educates healthcare staff to be friendly and non-judgemental. It works with boarding and secondary schools to train students and school staff as counsellors in whom their peers living with HIV can confide and find support. “It’s important to educate people and break down the taboos. Then, if a young person receives a positive diagnosis, we give them a VIP card,” Rakhmanina says. “It’s a way of introducing them to a more positive experience, and it enrols them on a fast track process that will get them seen as soon as possible by a doctor. We try to keep prescheduled appointments to a minimum and they’re always offered around times that fit in with an adolescent’s schooling. We have
young advocates who are available to talk to these young people and offer support frequently, particularly right after they have had a positive test for HIV.” The first results from the pilot RCP programme in Kenya’s Homa Bay and Turkana counties are encouraging. Previously, among those aged 15 to 21, only 66 per cent of adolescents initiated on antiretroviral therapy were still in treatment after three months; after
Through talking to adolescents and understanding what type of healthcare changes they would like to see, healthcare systems can design clinics, services and treatment plans that are built around what young people want, not what adults presume is apt. This can have a major positive impact on encouraging young people to keep on returning to clinics to see a doctor and continue treatment if they already have the virus and also provide the education and support to help more young people stay negative. This not only helps them stay healthy but guards against the virus developing to become resistant to the drugs they have been on – which can happen if they stop taking their medicines properly – helping current medicines to stay effective for longer.
ViiV Healthcare is a global specialist company dedicated to delivering advances in treatment and care for people living with HIV and for people who are at risk of becoming infected with HIV. The company’s aim is to take a deeper and broader interest in HIV/AIDS than any company has done before and take a new approach to deliver effective and innovative medicines for HIV treatment and prevention, as well as support communities affected by HIV. Find out more at viivhealthcare.com EGPAF is the global leader in the fight against pediatric HIV/ AIDS and has reached more than 27 million pregnant women with services to prevent transmission of HIV to their babies. For more information, visit pedaids.org
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INSPIRATION PHOTO: INTERNATIONAL AIDS CONFERENCE, DURBAN, 2016
Mr Ian Green Chief Executive, Terrence Higgins Trust
Do you know what living with HIV is really like? Ian Green’s life is testimony to medical advances in HIV support, but stigma surrounding the condition continues to prevent thousands from accessing the support they need.
Living with HIV for 20 years “In 1996, I was diagnosed with HIV. I was 31 and at most I thought I’d have about eight years,” explains Green, Chief Executive of the Terrence Higgins Trust. Now, happily married with a successful career, Green’s life expectancy is that of any man his age. Thanks to the development of new drugs, his viral load has been reduced to an undetectable level, which means he can’t pass the virus on to anyone. However, while there have been life-changing medical advancements over the last 20 years, society’s view of HIV and AIDS remains riddled with myth and stigma. “One reason is that we’ve not had a major public awareness campaign since 1987,” he explains – referring to the national TV ad and leaflet campaign of the late 80s, which showed the word AIDS emblazoned on a tombstone. Embracing HIV testing The reality is very different and yet it’s anticipated that as many as 13 per cent of people with HIV don’t know they have the condition. Public Health England also estimate that 42 per cent of people with HIV are still being diagnosed late, delaying themselves access to live-saving medication and putting others at risk. “We need to normalise sexual health testing,” continues Green. “There are so many options, you can now get tested in church, in gyms and even at home through self-test kits. We need to be giving people the widest possible array of choices.” With an early diagnosis, life can continue with relative normality. “When I was diagnosed, I was one of the first to be put on a trial for anti-retroviral drugs, but the side effects were awful – diahorrea, night sweats and nausea. Now I’m on three tablets a day – some people need only one – and there are no side effects,” continues Green. The changes have not just been physical, but also psychological. “When you have HIV, you start self-stigmatising. For so many years, I was told I was a risk to society. Now I know I’m not a risk to anyone, but it takes a while to unpack that and rebuild your life and self-perception.” Ending HIV transmission Through his work at the Terrence Higgins Trust, Green wants to ensure that quality care is accessible to absolutely everyone. “We want people not only to live well, but to thrive,” he explains. “We also want to amplify the voice of those living with the condition and anyone affected by it. Ultimately, we want to see an end to HIV transmission in the UK.” Twenty years ago, few believed that was possible, but Public Health England have just released figures to show the biggest ever drop in new diagnoses - with a decline of 18 per cent between 2015 and 2016. We clearly have the tools and the knowledge to ensure this
Sir Elton John, Founder of the Elton John AIDS Foundation
Q&A with Sir Elton John We know that around 13 per cent of those living with HIV don’t even know they have it – what more can be done to normalise sexual health testing and empower people to take ownership of their status? There’s lots of reasons why people don’t know their HIV status: not knowing the risk, hard to find somewhere to test, being scared of what you might find out... These are all challenges we can overcome. Finding the right platform – face to face, social media etc – and the right messenger to explain that HIV testing is important, easy, and it works is a powerful way to dispel fears and myths. HIV test kits are cheap, reliable and increasingly can be done at home. And HIV testing can reach people where they are: a football match, a music concert, a corner store or online. UNITAID is doing a great job of getting HIV self-testing to programmes in Africa. Ultimately, HIV needs to be just part of good health care, not a separate, scary, shameful disease. We have to get rid of the stigma of HIV. Making HIV testing as widespread as possible makes it normal and not shameful. When we can talk about HIV like we do about diabetes, then everyone can own their status. What do you consider to have been the ‘game-changing’ medical and social advancements, with regard to HIV and AIDS, in the last 20 years? One thing we’ve learned about HIV/ AIDS is that there’s no magic bullet.
I remember when people got an HIV diagnosis and just went home to die. When ARV therapy came along, it was like a miracle! Then we found out that drugs could prevent transmission of HIV from mother-to-child - amazing! I’m really proud the Elton John AIDS Foundation helped over 800,000 women have HIV-free babies. Today we are looking at the next generation being AIDS-free. Finally the HPTN 052 study that showed people who stay on good HIV medicine are up to 96 per cent less infectious. That was extraordinary. And looking into the future, I think PrEP has a huge role to play in keeping people safe.
Public Health England have just released figures to show the biggest ever drop in new diagnoses of HIV. How can we continue this trend and do you think that we can reach a point where we have eliminated HIV transmission in the UK? The change in the UK epidemic is so exciting. Again, no magic bullet but some big wins. Making sure people know their status and get on treatment quickly is crucial. Offering PrEP for people at risk is having a big impact. The Elton John AIDS Foundation funded PrEPster and IWantPrepNow to accelerate access to this important tool and I’m full of admiration that NHS England will make PrEP available to 10,000 people. Prevention rather than cure! And then there’s finding people who are living with HIV but have really been missed – the late diagnosed. Last year, I visited King’s College Hospital
emergency Department for HIV. The hospital is in a high HIV prevalence area, so it makes sense, right? The scheme found people who’ve been sick for a long time but were never tested before. So we think there needs to be more of this. My Foundation is launching a scheme working with local councils in South London, and NHS England to find many more of the 4,400 people in London who are living with HIV but don’t know it. If PreP can help prevent new infections and we can get everyone infected onto to treatment, then yes I absolutely believe we can beat AIDS in the UK.
What are the greatest challenges that still need to be overcome in the fight against HIV/AIDS? The biggest is stigma. Shame really. Shaming and blaming people for having a disease that anyone can get. We have to lose the 1980s ‘plague’ associations. We have to stop making people feel ‘less than’ because of their sexuality or their vulnerability to infection. Only AIDS wins down that path.
When it comes to HIV and AIDS, what do we need to educate people about? That AIDS is not a death sentence. People can live normal, healthy lives with HIV. They can have HIV-free babies. They won’t pass the virus on to other people if they are on treatment. That love, not hate, is the cure.
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PHOTO: INTERNATIONAL AIDS CONFERENCE, DURBAN, 2016
Sir Elton John: “Love, not hate, is the cure.”
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Vinay P. Saldanha Regional Director for Eastern Europe and Central Asia, UNAIDS
Eastern Europe can reduce instances of HIV — other regions have Current measures to fight the HIV and AIDS epidemic in Eastern Europe and Central Asia are not working, says Vinay Saldanha, UNAIDS Regional Director. It’s time to think differently.
What are the challenges facing Eastern Europe and Central Asia regarding HIV and AIDS? Unfortunately, this is the only region of the world where both HIV incidence — or new infections — is increasing, as well as AIDS-related mortality. Now, the only way to drive down incidence is to implement effective HIV prevention programmes. Programmes do exist across the region, but their coverage is not sufficient to have a decisive impact on reversing HIV trends. All countries in the region are doing a lot regarding HIV but, if the epidemic continues to expand, it is a clear and ominous sign that current measures are not enough. Put simply, we need to break the trajectory of the epidemic in EECA. Other regions of the world have been able to do it.
Is it possible to copy the methods of regions that have been successful? Each region has its own cultural, political and medical peculiarities that need to be taken into consideration — but, yes, if HIV prevention works in one region, it will work in another. And we can point to some success stories in Eastern Europe. For example, St Petersburg has one of the largest numbers of HIV cases of any urban center in the European region, but effective HIV prevention programmes have meant that – for three years in a row – there has been a decrease in the city in new HIV infections, even among the most affected populations, including injecting drug users. It’s proof that HIV prevention can work here in EECA.
In the fight against HIV and AIDS, does EECA feel like a forgotten region? I wouldn’t say ‘forgotten’ because it’s getting an awful lot of attention in the media. But I would argue that AIDS is still perceived both publicly and by policy-makers as only a ‘health issue’. It’s bigger than that though. We can’t solve this problem without fully mobilising the health sector, but we also need the private sector, pharmaceutical companies, the education sector and high-level political engagement and advocacy.
How important to the EECA are organisations like the Elton John Aids Foundation (EJAF)? The EJAF has started a fund for the EECA region focusing on HIV prevention and treatment for both HIV and Hepatitis C, for gay men, sex workers and people who inject drugs. Until we end the epidemic among these populations, we are never going to end the HIV epidemic in Eastern Europe and Central Asia. Of course, it’s not the only organisation that’s doing great work in the region. There are also other sources and programmes that are helping countries, organisations and people who desperately need attention and financial support for HIV programmes, but EJAF is a welcome, timely and focused initiative. Read more on globalcause.co.uk
Sir Elton John and David Furnish visit a mothers2mothers clinic in Cape Town, South Africa
The Elton John AIDS Foundation calls for greater compassion
By Kate Sharma
Great medical advancements in HIV care are useless if those living with the virus are too fearful to seek support.
Treating people with HIV is one of the most effective forms of prevention. But getting care to those who need it remains a huge challenge, largely because individuals most at risk - people who inject drugs, sex workers, and gay men - are some of the most marginalised people in the world. “It might sound rather trite, but we simply need to show more love and compassion,” explains Anne Aslett, CEO of the Elton John AIDS Foundation (EJAF). “When people are told they are worthless then they lose their self-esteem – they stop caring about themselves and they stop caring about others. But when you show compassion and provide support – people become enthusiastic peer-to-peer advocates within their communities.” It’s a challenge that EJAF are tackling head on. In 2016, they joined the US government in a $10m fund to support HIV initiatives with LGBT populations in African countries where homosexuality is a crime. This year, they’re taking a similar approach to reach key communities in Eastern Europe and Central Asia, where HIV is spreading faster than anywhere else in the world.
medication have also helped key populations. But Aslett believes that – through the business community – there is further potential to leverage distribution channels and provide technology to ensure resources are taken directly to even more people at risk. Gov
Working with governments com Anne Aslett CEO, the Elton John AIDS Foundation
Working with communities On a very practical level, the foundation deliver care in partnership with local organisations, providing rapid response to protect the physical safety of individuals, and creating environments where those living with HIV can thrive. “It’s not enough just to train the doctors in a clinic,” explains Aslett. “If someone is treated badly by the receptionist, then they won’t go back for treatment. This needs to be a community response, which is why we work a lot with community leaders.” The provision of home testing kits and the use of mobile phones to direct individuals to safe clinics and remind them to take their
Permanent progress, of course,com requires a sea change in the halls oftog power. Over the years the EJAF hasHIV become a leading authority on HIVand and AIDS and they are using their influence with increasing effec-Tha tiveness at a governmental level.in tr Through their “Lighthouse” grantshas they are already supporting HIVHIV care within the public health sys-ott, tems of a number of African nationsEME and hope to extend the model intocom Eastern Europe and Central Asia. man When the International AIDSrem Conference convenes in Amster-issu dam next year, the foundation willEuro urge the world to accelerate its Th support to the people who need itinfe most. With tools, knowledge andsinc experience at their fingertips andhav support from governments, inter-you national organisations and busi-Rus nesses, there is a tangible senseHIV that an end to AIDS is possible. con still who Read more on they ejaf.org and
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GLOBALCAUSE.CO.UK 13 PHOTO: ELTON JOHN AIDS FOUNDATION
PHOTO: ELTON JOHN AIDS FOUNDATION
Young women participate in HIV awareness campaign
Joining forces in the fight against HIV/AIDS By Tony Greenway SPONSORED
available in other parts of the world. Meanwhile, the disease has real stigma associated with it, which is a major problem in this region.”
A complex challenge
Governments, healthcare practitioners, NGOs, companies, educators and communities need to work together to tackle the growing HIV crisis in Eastern Europe and Central Asia.
Thanks to the many recent advances in treatment and care, much progress has been made in the fight against HIV and AIDS, says Dr Michael Elliott, Vice President, Medical Affairs, EMEA, at the biopharmaceutical company, Gilead Sciences. However, many more people living with HIV remain in need of treatment. The issue is particularly acute in Eastern Europe and Central Asia. This is a region where new HIV infections have risen by 60 per cent since 2010 and AIDS-related deaths have increased by 27 per cent. “If you visit parts of Eastern Europe and Russia, for example, it’s clear that HIV/AIDS is still a major issue and concern,” says Elliott. “There are still young people in these countries who are dying from AIDS because they are not able to access healthcare and treatment that is more readily
Elliott has seen first-hand the vast differences in how HIV is managed from region to region. Eastern Europe and Central Asia, he notes, suffers from a combination of problems. “First of all, many of these economies are financially strained, so money to fund healthcare is limited,” says Elliott. “That means the appropriate healthcare infrastructure is not always in place, meaning a lack of testing, screening and treatment services.” In addition, medicine distribution to clinics may be poor, and prevention programmes, safe sex education and preventative options may be either limited or non-existent. These individual challenges create a complex situation.
Working together to deliver solutions To transform and simplify care for the 1.5 million people living with HIV in the Eastern European and Central Asian region, joint working will be essential to finding the right solutions for maximum impact, says Elliott. That means fostering a productive environment so that various players can work seamlessly together: governments, healthcare professionals, NGOs (non-governmental organisations), pharmaceutical
Michael Elliott Vice President, Medical Affairs, EMEA, Gilead Sciences
companies, educators and the communities themselves. “We all have a role to play. We need to have an open conversation and build on the good work that many governments have already started, to create a plan with the same aim — and then deliver it,” says Elliott. “If more focus is given to medical infrastructure, appropriately trained healthcare professionals are in place, and the right therapies are made available, then a system will have been developed that can become readily sustainable. Stigma also needs to be reduced so that patients are not worried about coming forward for care.” If all this is achieved — along with a good follow-up service to monitor patients — then Elliott believes that instances of the disease in the region could fall.
The importance of partnerships and corporate giving in the fight against HIV and AIDS — particularly in the Eastern European and Central Asian region — cannot be underestimated either, he maintains. For example, Gilead Sciences partners with various organisations around the world doing their own vital work to help end the global HIV epidemic. Most recently the company has supported the Elton John Aids Foundation’s Key Populations Fund for Eastern Europe and Central Asia. Over three years, the Fund will reach an estimated 20,000 people most vulnerable to the epidemic with HIV prevention, testing, and treatment. Gilead is also working to provide a donation of medicines for hepatitis C – a critical contribution in a region where up to 97 per cent of people living with HIV are co-infected with hepatitis C. In addition to working at a regional level, the company also focusses on country specific support. For example, it has partnered with a group in Greece called Athens Checkpoint in order to improve prevention testing and treatment programmes in Albania.
The importance of local knowledge Organisations such as these are vital in the battle against the disease, says Elliott, because they are staffed by experienced professionals, from the executives at the top all the
way through to the people on the ground. “They are also extremely knowledgeable about what is needed locally when it comes to treating HIV and AIDS,” he says. “They are well connected and understand the dayto-day operations of the countries in which they choose to work. The Elton John AIDS Foundation, for example, has been on the ground with local NGOs, healthcare practitioners and also local departments of health. And they’re good at connecting with other companies and governments around the world to seek either funding or support in order to move forward. When you put all of these things together – commitment, expertise, connectivity – it’s easy to see why they have been successful and will continue to be so.” Elliott says he is naturally an optimist, and we must focus on the potential to do more in Eastern Europe and Central Asia. “We have the tools to make a difference, there are many committed people in the field, and many others behind the scenes working on new research which may one day hopefully lead to a cure. “The potential is there and the momentum in this area is growing. There is a lot of energy all headed in the same direction.”
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Sentebale’s Co-Founding Patron, Prince Harry, with youth advocate, Tlotlo, at Sentebale’s Let Youth Lead Roundtable at the London School of Hygiene and Tropical Medicine
Complacency threatens HIV progress, warns Prince Harry Through his charity, Sentebale, Prince Harry is tackling complacency towards HIV by empowering a new generation to speak up. By Kate Sharma
“When my mother held the hand of a man dying of AIDS in an East London hospital, no one would have imagined that, just over a quarter of a century later, treatment would exist that could see HIV-positive people live full, healthy, hopeful lives,” says Prince Harry. The prince has continued his mother’s work by setting up the charity, Sentebale, in 2006, with Prince Seeiso of Lesotho, which supports the mental health and wellbeing of children and young people affected by HIV in southern Africa. A quarter of a century since his mother’s pioneering work began, thanks to the work of Sentebale and other organisations tackling HIV-related stigma and discrimination, the virus is no longer considered the death sentence it once was. However that does not mean the HIV/AIDS community’s work is done – far from it.
Complacency threatens progress “We now face a new risk – the risk of complacency,” says Prince Harry. “As people with HIV live longer, AIDS is a topic that has drifted from the headlines. And with that drift of attention, we risk a real drift of funding and of action to beat the virus.” The facts speak for themselves. HIV remains a leading cause of death for adolescents in sub-Saharan Africa and, within the UK, infection rates continue to rise in some groups despite the availability of instant testing and universal access to treatment. The fear of discrimination continues to deter people from testing for HIV and seeking life-saving treatment.
Empowering a new generation If we are to maintain positive momentum and push forward to
an AIDS-free future, Sentebale’s Co-Founding Patron, Prince Harry, believes we need to listen much more closely to young people living with the virus. “What I believe is that we cannot beat HIV without giving young people in every country the voice they deserve. Without education and without empowerment, HIV will win,” he says. Research shows that young people affected by HIV in southern Africa face many barriers to accessing care, with their wider social and emotional needs often overlooked. “We knew that just focussing on the physical effects of the disease wasn’t enough. I’ve seen first-hand the amazing progress that has been made in treating the physical and mental effects of HIV,” he explains. “Seeing young people who have so little, yet who work so hard to support their friends and educate their
families about HIV, continues to inspire all of us at Sentebale. They are why I care so much about this fight.” Earlier this year, Sentebale launched ‘Let Youth Lead’, an advocacy programme to give young people in southern Africa, who are affected by HIV, a platform to voice their challenges and engage policymakers to drive positive change in interventions that better support the health of their generation.
and Sentebale are determined to advance the progress that has been made and to extend vital support and services to the most marginalised youth across southern Africa. “It is time for a new generation of leaders to step forward,” concludes Prince Harry. “In helping young people fight HIV we would not just be ending this epidemic, we would change the direction of history for an entire generation.”
Ending the epidemic As Prince Harry continues the work his mother began, he wants to galvanise support for young people to break down barriers – such as a lack of youth-friendly health services – that are preventing them from knowing their HIV status and accessing life-saving treatment once and for all. Prince Harry
This commentary is taken from past engagements Prince Harry has undertaken with Sentebale. This is not new or exclusive content.
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Loyce Maturu turns her personal tragedy into global support and inspiration By Sean Hargrave A tragic family background could have made Loyce Maturu bitter. Instead, she has used it to inspire change in how adolescents with HIV are treated.
Loyce Maturu knows only too well how devastating it can be for an adolescent to be told their HIV test has proven positive. She was just 12 when she was told she was HIV-positive, two years after her mother and brother had died of AIDS-related illnesses. “I remember how depressed I was when I received my diagnosis,” she says. “I was just crying. I thought I was going to die because I’d had close family members who had died of AIDS-related illnesses.” Loyce’s father had tragically been killed in a car accident several years earlier and so it was only the loving concern of an aunt that prompted her to be taken to a clinic to be tested after a prolongued bout of illness had
forced her to stop attending school. Sadly, family developments meant the aunt was not to be so involved in her upbringing and she spent time with other family members who were so verbally abusive, she attempted suicide.
HIV-positive adolescents need adult support Rather than be bitter, though, Loyce, now 25, decided to use her tragic family experience to good use by working for the Zvandiri NGO, as a Community Adolescent Treatment Supporter (CATS) and Youth Ambassador. CATS are HIV-positive young people who work in their communities providing information, counselling and medication support for children and adolescents with HIV. She wanted to give the support to her peers that was so sorely missing in her own upbringing. “As an advocate, I do a lot of work in helping wider communities
Loyce Maturu Community Adolescent Treatment Supporter and Youth Ambassador
understand that adolescents are not children but they’re not adults either,” she says. “It’s a distinct age group and being told you’re HIV-positive at that age can lead to a lot of anxiety and depression. Young people would normally look to their parents for help
“I’d love my mother to see the person I’ve grown up to become. By sharing my experience of dealing with my diagnosis without family support, I hope I can carry on helping.”
and support but adults are not always well-educated.”
Global platform On a wider scale, Loyce is now involved in telling her story to global healthcare organisations to help them see how adolescents are
under-served and need testing and treatment services that are built around their distinct needs. “Through the Zvandiri NGO I work with, I’ve been given some amazing opportunities to talk to organisations who are keen to listen to how they can do more to support young people,” she says. “I helped the World Health Organization work on its guidelines for ensuring adolescents are not left behind in HIV care and have advocated for Global Fund funding for adolescents. I’ve shared platforms with truly inspirational people, such as Prince Harry, Sir Elton John and Canadian Prime Minister Troudeau.” While high-profile speaking engagements are likely to continue, Loyce’s first calling will always be in helping adolescents in her native Zimbabwe. “I want to continue giving back to my community,” she says.
"Supporting children, adolescents and young people living with HIV so that they have the knowledge, skills and confidence to live happy, healthy, safe, fulfilled lives”. @zvandiri
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Worldwide, 1.8 million people became newly infected with HIV in 2016, meaning that today 36.7 million people are living with this infectious...
Published on Jan 12, 2018
Worldwide, 1.8 million people became newly infected with HIV in 2016, meaning that today 36.7 million people are living with this infectious...