AfricanEyeVOICE. Meet the world s strongest HIV Positive Campaigner: Milly Katana. plus Treatment News Treatment Q&A History of HIV and much more...

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1 The AfricanEyeVOICE THE UK S FIRST AFRICAN HIV TREATMENT PUBLICATION February 10 - May 10 Meet the world s strongest HIV Positive Campaigner: Milly Katana plus Treatment News Treatment Q&A History of HIV and much more... FREE COPY

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3 Contents Interviewing Milly Katana 4 From tombstones to treatment; a brief history of HIV 7 Treatment Q&A 8 HIV and Human Ageing 10 Adherence and behaviour 11 Less resistance with FTC than 3TC when combined with tenofovir 14 HIV treatment may prevent at least nine out of ten transmissions 16 Tackling Tuberculosis In England 18 Who is a Treatment Advocate? 19 Living Confidently With HIV 21 Directory 23 Production Team Acting Editor in Chief Mike Hiiza Deputy Editor in chief Jacqueline Uwera Honorary Editorial Advisor Dr. Jeanette Meadway Consultant Elias Phiri Honorary Editorial Consultant Ingrid Kloet Technical Advisor Badru Male Founder Elijah Amooti Graphic Designer Ian Lynch Senior Advisor General Duty Mr. Luke Kwamya The African Eye Voice magazine is published by Editorial Mrs. Maureen Ndawana Guest Editor HAPPY NEW YEAR. The New Year has taken possession of the clock of time and hails the duties and possibilities of the forthcoming twelve months. It is my pleasure to present for the first time as African Eye Voice Magazine editor, the first edition of the African Eye Magazine for 2010.As you have noticed this magazine features the best ever information one would wish to know about what is happening in the world of HIV/AIDS nationally as well as internationally. Meet Milly Katana, a treatment advocate who explains the importance of adherence to HIV treatment for a healthy long life. This is where it s happening and African Eye Trust as an upcoming and growing organisation; it is our mandate to give chances to guest editors like me a way of giving taste and variation to the publication. This month s issue involves a lot of advocacy work done by people who have the zeal to work with African communities in raising awareness on HIV/AIDS. The fight is nonetheless far from being won. You will also find a variety of very exciting articles and news items which have been especially tailor-made to suit you. On behalf of the African Eye Trust, I would like to thank Simon Collins for his dedication as Editorial advisor since the magazine was launched and we wish him the best in his endeavours. More so I would like to take this opportunity to introduce Mr. Luke Kwamya Senior Advisor General Duties, Mr Richard Fenvewo who is Fundraising Mananger, Mike Hiiza as the Training Programme Officer and Ingrid Kloet as Honorary Editorial Advisor. I would also like to thank all those who spared their valued time to get in touch with African Eye Trust team to make this piece of work come into being. As ever, we welcome all comments, suggestions you might have and we encourage you to contact us. If you would like us to cover any particular topics on HIV/AIDS or on HIV treatment, please feel free to the editor@africaneyetrust.org.uk. We guarantee our best response to all topics. ONCE A TREATMENT ADVOCATE ALWAYS ONE. The African Eye Trust (TAET) Central Office Phoenix Yard, 65 Kings Cross Road, London, WC1X 9LW Tel: Mobile: Fax: info@africaneyetrust.org.uk Website: Registered address: 226 High Street, Suite 107, London, CR9 1DF Registered Number: Disclaimer: All opinions expressed and photos published remain the property of The African Eye Trust The African Eye Trust providing clear HIV Treatment information to African communities For Treatment News, HIV Treatment Advocacy Training/ Forums and HIV Treatment Information Events Opportunities Available We need volunteers with the following skills: writing & web design. The African Eye Trust is looking for budding writers and web designers who are already involved in HIV work to be trained as African Eye magazine Reporters. University students are also welcome. For more information please forward your CV and samples of your writing to info@africaneyetrust.org.uk

4 TREATMENT Interviewing Milly Katana by Dr Lilian Mary Nabulime LMN: Tell me about yourself, work etc. MK: I am Milly Katana, 40 years old. I have been living with HIV for the last 21 years. I have been a volunteer in the HIV sector since my diagnosis. I am currently working with JSI. Before that I worked with the United Nations Development Programme and also the International AIDS Alliance in Uganda as a country representative. I have been on treatment for the last eleven years. My health has greatly improved and I am greatly thankful for the breakthrough of treatment for people living with HIV and AIDS. LMN: The late Martin Flynn of Positive Nation met you in London and he said that Milly Katana who sits on the Global AIDS Fund to fight AIDS, TB and Malaria (GFTAM), may well be the most powerful HIV positive person in the world, how do you feel as a dedicated HIV advocate when you hear such compliment? MK: My friend Martin Flynn May His Soul Rest In Peace. When he passed way I was in the southern part of England in 2008, though unfortunately was not able to attend his funeral. His statement, in my opinion, is a bit of an overstatement. Really there are many unsung HIV positive advocates across the world, the only difference is they asked me to represent them on the Global Fund to fight HIV/AIDS, TB and Malaria board when it first started. There are many heroes out there whom we need to be cerebrating. LMN: Do you consider HIV testing important? If No/yes and why? MK: HIV/AIDS testing is important because it is the first step in addressing this battle that we have got to fight HIV and AIDS. Its like in the military; if you do not know your enemy then you cannot fight them. If you do not know the strength of your enemy then you cannot stock the ammunition that you need to engage the enemy. So with out HIV testing you are as good as hopeless, so HIV testing is the first step. LMN: Were sufficient HIV related services available when you were first diagnosed? MK: I was first diagnosed sometime in AIDS Information Centre was still working at Bauman House on Parliament Avenue. There were one or two HIV and AIDS related services providers in the country then; AIC and TASO. Services were very limited and it was very difficult for people living with HIV/AIDS even to know their status. It is still difficult today but it was worse at that time. That is why today with the expansion of testing opportunities we really encourage everybody to be tested to know their status. LMN: What is the biggest change that you have noticed over HIV services in the last few years? MK: I think one of the biggest changes that I can talk about from the positive angle is the reasonable openness. Society has come to terms with HIV as one of the issues we have to deal with. Sometimes I joke about AIDS and say that HIV has brought out the best the worst out of human beings. It has brought about the best because it has shown that human beings are capable of caring for each other. However it has also brought out the worst. We did not know that somebody could abandon another at his or her most point of need. We are seeing friends living with HIV who are thrown not only out of their families but also from jobs. Widows are thrown out of their marital homes by relatives of their husbands because the relatives conclude that it is the living widow who may have infected the husband. There have been changes in both directions both good and bad but at the end of the day all of us living with HIV we are very grateful that we are alive. LMN: People say that, doctors in most parts of resources limited countries lack communication skills with their patients. How true is this? MK: There is reasonable truth in this, however there has been improvement over the years as far as communication skills are concerned. If you look at medical ethics it was a patient/ Doctor or health career worker relationship. It was one of superior and less superior relationship but with HIV, people living with HIV have become reasonably informed about the issues they have to deal with. Therefore the doctors who care to be in tune with the times have had to improve on their skills. But also one of the other issues is the numbers they have to deal with. If one doctor/health career worker or nurse has one hundred people waiting outside their examination room, humanly speaking you do not expect them to do their best as far as communication concerned. Yes, their might be communication challenges but also the numbers is of great concern. For example in Uganda the latest statistics show that we have 1 doctor to about 20, 000 individuals. This is very big. If you go to an HIV clinic the numbers are terribly overwhelming. And unfortunately some of the few doctors that we have, have not moved beyond the old tradition of superior and The African Eye Voice 4 February May 2010

5 TREATMENT less superior relationship in the medical practice. A few months ago I went to a place I usually get my care and talked to this young doctor about my situation and the worries that I had. And the young man told me Oh! you are going to be a textbook of something. Yet I knew I was more informed than him. I forgave him but felt pity for him because I felt he was in a wrong placetalking to a patient in such a manner. If it was not me who is empowered it can be very depressing and disempowering to a patient. LMN: In the UK we have HIV treatment advocates patient organisations like the African Eye Trust, NAM, HIV-base working with patients and professionals. Do you think if this system is duplicated in resource limited poor countries will improve the quality of life of people living with HIV/AIDS. MK: I must say that some effort has already been made, not really to duplicate what has happened in the UK, but set up some mechanisms to support people living with HIV with in the framework of less development. In every country you go to across the world you will find a network of people living with HIV and AIDS. We may not be as sophisticated as the UK based organisations but there are organisations that are in tune with the limited resources available. Of course learning never stops; I personally always get a lot of literature from the UK. I terribly miss the Positive Nation. And African Eye is very informative. So we share information from across the world. LMN: Tell me more about the importance of adherence and how it has helped you. MK: Adherence is the most crucial issue as far as reaping the benefits out of HIV treatment is concerned. Many friends who have not been able to adhere to their treatment for one reason or another have either left us or have had major health related complications. The non adherence could be as a result of many factors some of which could attributed to the individual themselves, to their social network but also to the health care system. In Uganda, for instance, recently there was somebody who wrote in the New Vision newspaper (one of the dairies) about receiving Conbibar and not Sustiva and yet these drugs are supposed to be taken in combination, so the problem is not with the patient. The one who wrote in the newspaper is a one in thousands of those who are not able to even what to complain about let alone express their concerns in the public. We know that many of our friends living with HIV/AIDS are not able to adhere not because of their own making but because the healthcare delivery system has failed us But also the social setting can contribute to the non-adherence. For instance if people are in relationships (now we have discordant relationships where one partner is HIV positive). The one living with HIV starts treatment and the other one who is HIV negative may not be comfortable in the relationship. The one who is HIV positive may find problems in taking his/her medicine because their partner or relatives in the house are making it difficult. So it is a whole range of factors but again in order to get the best out of the treatment, adherence is crucial. And on this note we have to work as AIDS activists to facilitate maximum adherence to HIV treatment and also averting an epidemic of drug resistant strains of the virus. LMN: Should provision of HIV treatment information to African communities continue and why? MK: Somebody who does not have information is as good as hopeless I must say. So with out information what is a human being worth of? African communities or non African communities, treatment information is very crucial. And more so as HIV treatment is not static; things keep on changing. We are now aware that the World Health Organisation is changing the treatment guidelines. Some of the first drugs that were widely used across the world including Zerit which is also referred to as D4t are being discouraged due to high levels of toxicity. New research is underway to formulate easier, sater and more effective regimens. Such information is important to both African communities and non African communities, all people living with HIV and AIDS and their care givers across the world. LMN: What would you say to someone about changing treatment if they are experiencing problems? MK: It absolutely important that one sees a professional clinician to be able to determine the extent of the problems. Some of the problems are not easy to manage or it may be that the patient just need to change the time to take the drugs or be helped to follow the requirements. For example, if you have to take the drugs on an empty stomach; you do that or with food, you do that. Some of the problems are easily managed with common medications. For example if someone is experiencing headaches, that can be managed with normal painkillers. But the whole point is somebody has to be examined by a competent clinician who is experienced in what they are doing. The downside to this is that in most parts of Africa, these competent clinicians are is not readily available. In Uganda we are facing major stockouts not only of drugs but also testing kits including CD4s and viral load diagnostics. So, if somebody is experiencing these problems even if they have to drag themselves to health facilities they may not be appropriately examined. But the science of caring for people living with HIV is improving over the years whereby an experienced clinician can make some sound judgment even without using the complicated laboratory interventions. LMN: Can you comment on African communities taking part in clinical trials? It seems in the studies many Africans have not taken part. MK: Clinical trials are the answer to the future not only of HIV and AIDS treatment but health care generally. When you read the history of vaccines and drug development generally, if we did not have those individuals volunteering to be part of the trials February May The African Eye Voice

6 TREATMENT we would not have even the simplest medications that we have at the moment. Talk about the measles vaccine, which we take for granted now. Ever since you and I were born the measles vaccine is available. But we take it for granted yet there were some people who were involved in the trials. So it is absolutely important that everybody, not only Africans but men, women and also at some point children get involved in clinical trials. Some issues of dosages and genetics, all those need to taken into consideration before a drug is put on the market. LMN: It seems in the studies many Africans have not taken part. Is that true? MK: It depends on where the studies are happening. These days they are multi-country or multi-site studies or trials. For example AZT, one the first ARV, was tried here in Kampala, among other places, at the Joint Clinical Research Centre (JCRC). So it all depends on the level of engagement that the researchers would like to have. Today as far as HIV/AIDS prevention technologies are concerned there are opportunities across the world even with in Africa where Africans do participate in the trials. And this is happening to a great extent. May be in Europe Africans may not participate that much, but that I cannot comment on that because I do not live in Europe. Because I live here I know Africans are participating. Again one has to emphasize that it is important African communities should participate because there are some genetic differences between races. For example when you read in scientific journals you will see that African women are more prone to cancer than white women. So there may be those differences which can only be effectively tracked if people of a particular race participate in particular trials. LMN: Would you like to say anything more? MK: I think this time around we need to engage in what I choose to call Third Generation Advocacy. And this is advocacy for HIV prevention. The first generation we did advocacy for broader openness around HIV; we have achieved this to a reasonable extent. In the second generation, we did advocacy around treatment; we got it though we need more. And now with increasing numbers of new infections and also the level of burden the new infections are putting on our health care delivery systems across the world, we should launch a third generation of advocacy. We need to engage in massive prevention campaigns, including prevention research, and working tooth and nail to get as fewer people as possible getting infected with this virus, which we know can be prevented. LNM: Once again thanks for offering your valuable time Milly Katana Dr Lilian Mary Nabulime, PhD Newcastle University, UK. Title of Thesis: The Role of Sculptural Forms as a Communication Tool in Relation to the Lives and Experiences of Women with HIV/AIDS in Uganda. Newly diagnosed or about to start anti HIV medication? Thursday March 11th 6:30pm - 8:30pm Cara is running a special workshop just for you with Robert Fieldhouse (Baseline magazine) and Juliet Bennet (HIV/Adherence specialist nurse). This takes place at The Cara Trust - Notting Hill Methodist Church 240 Lancaster Road W11 4AH. Ladbroke Grove tube. Call Cara to book a place. Thank You to antiretroviral therapy (HAART) STEP CONSULTANTS LIMITED STEP Consultants Ltd. is a registered company providing Healthcare and Capacity Building services Health Care Services Domicilliary Care, Health Promotion, Healthy Living Training, Prevention of Sexually Transmitted Infections, Mental Health and Care for the Elderly Capacity Building for Community Organisations Marketing, Business Planning, Fundraising, Partnership Building, Management, ICT, Governance Development, Monitoring & Evaluation, Quality Mark Assurance Limited Company Number: Languages Lingala, Swahili, Luganda, Kinyarwanda, French, Arabic, Russian, etc. 2nd Floor, Day Lewis House, Bensham Lane, Thornton Heath CR7 7EQ Tel: Fax: admin@stepconsultants.co.uk The African Eye Voice 6 February May 2010

7 TREATMENT From tombstones to treatment; a brief history of HIV Dr. Jeanette Meadway, HIV Consultant/Senior Advisor, TAET In the last 40 years, HIV has gone from being a much-feared unknown quantity and a death sentence to being a chronic disease. We ll look at the key issues in each decade. 1970s - Silence In the 1970s AIDS and HIV were not known, but HIV was being spread unrecognised. When HIV testing became possible in the 1980s, stored blood samples from earlier years showed a pattern of occasional positives in earlier years without obvious spread, but the current epidemic appearing to spread from Africa in the mid to late 1970s. 1980s - Discovery and fear In June 1981, there were five cases reported in the USA of PCP pneumonia, which occurs when there is immune deficiency. The first patients were gay men and then injecting drug users and haemophiliacs; the syndrome of immune deficiency occurring for the first time in adults was named AIDS; the Acquired Immune Deficiency Syndrome. It was some years before heterosexual spread and motherto-child transmission were recognised, and gay men remained the largest group of people with HIV. The virus causing AIDS was isolated only in 1985 and given the name HIV, Human Immune deficiency virus, in HIV testing was introduced, but many patients were diagnosed only when there disease was far advanced with AIDSdefining illness and a low CD4; their life expectancy was less than two years, most of that time in chronic ill-health. First AZT (zidovudine) and then ddi (didanosine) were developed and used as monotherapy with little effect on the course of the disease. Fear and stigma were extreme. In the USA police wore masks and gloves to approach an HIV patient, and positive people were excluded from schools and from work, and many people left a ship when a person on board was found to be HIV positive. The campaigns to increase awareness included tombstones falling over, or the Grim Reaper; which served to increase fear and stigma. The HIV patient who characterised the 1980s was a gay man in his 20s who first had PCP pneumonia and then a succession of AIDSrelated illnesses, getting progressively thinner and weaker, and dying within 2 years of diagnosis. Society s response to him was to call other patients innocent AIDS victims implying that he was guilty; and health care workers were not immune to extreme fear; my patient like the one described lay sick at home while a health visitor argued over him with ambulance men who refused to take him to hospital for fear they would catch HIV. 1990s Slow dawn of hope In 1991 the World Health Organisation had reports of 310,000 people with HIV/AIDS, but estimated that the true number was nearer a million. The Concorde trial showed that AZT was of no benefit to HIV positive people without symptoms, widely misinterpreted as HIV drugs don t work. The Delta trial showed two drugs in combination delayed progression to AIDS and death. Then the first protease inhibitor drug, saquinavir, allowed effective triple combination therapy, and HAART was born. Patients who had been near to death recovered and were discharged from hospital; this became known as the Lazarus effect. Nevirapine became available in 1996, allowing another option for triple therapy. The death rate from AIDS fell while the number of HIV infections increased. The need for in-patient palliative care diminished, and the London Lighthouse closed its inpatient unit. The effect of AZT and Caesarian section on reducing mother to child transmission was discovered, and using both reduced transmission to below 2%. The discovery of a young woman infected with HIV by her dentist led to hysteria about HIV testing for health care workers. The USA continued a ban on HIV positive people entering the country; and offered loans to African countries so that they could purchase HIV drugs. In 1999 in the UK, the number of newly diagnosed heterosexuals with HIV outnumbered gay men for the first time, and UNAIDS reported the number of HIV infections world-wide as 34.3 million, 1.3 million of whom were children under the age of 13 years. The patient who epitomised the 1990s would be a young man near to death, who began HAART, became well and went back to work; and a young woman with HIV who had AZT and a Caesarian section and whose baby was HIV negative. But both would be in Europe or the USA. The African Eye Voice 7 February May 2010

8 TREATMENT 2000s Hope for Africa too The Indian firm Cipla produced a triple combination tablet which cost less than a dollar a day. This generic combination was breaking patents; eventually it was agreed that countries declaring HIV a national emergency could have access to the generic drugs. Prices for some branded ARVs were also dramatically reduced, particularly of interest when Abbott also produced a tablet version of Kaletra (Aluvia in Africa) instead of the difficult-to-swallow capsules which had to be kept in the refrigerator. WHO and UNAIDS planned a 3 by 5 initiative, to reach 3 million people in developing countries with HAART by The target was not completely met, but millions received treatment under this initiative. The Global Fund for TB AIDS and malaria, the Clinton AIDS Foundation, PEPFAR (the US President s Emergency Plan For AIDS Relief) and the Bill and Melinda Gates Foundation all brought treatment to millions in developing countries. Studies showed that roll-out of HAART in generic formulations, supervised by trained but junior staff, and with minimal use of CD4 and no viral load measurements, could nevertheless produce as effective reduction in viral load reduction as more expensive branded drugs in studies in the UK and USA. The noughties saw development of drugs of new groups; attachment inhibitor, and integrase to add to the fusion inhibitor already established. New drugs in old groups improved their profiles, and the first non-generic triple dose of HAART in single daily tablet was released in the UK and USA. HIV was infecting more countries in Europe, Asia and the Americas as well as Africa. But in 2002 seven in ten of all HIV infection were in sub-saharan Africa, and 58% of those were women. The profile of the 2000 s would be a young African woman. 2010s Forward in hope We now have HAART in easy-to-take formulations, choices of different ARV groups or use in treatment failure, very effective prevention of mother-to-child transmission, and rollout of drugs in many countries but specially Africa. But we must not become complacent until everyone who needs treatment is receiving it, and until short-term HAART is reaching all pregnant women with HIV Jeanette Meadway is Honorary Consultant at Mildmay UK in London; and Honorary Professor of Internal Medicine at Gulu University, Uganda. Treatment Q&A by Simon Collins, HIV i-base Can someone whose CD4 count is below 200 when they start treatment, still expect to live more than a decade? Treatment will work at any CD4 count. If your count is already low and you have been lucky so far, then starting now is important. If your count is still above 200 now, then starting before it drops below 200 is important. Most guidelines recommend starting at around 350. If you use treatment carefully, you can easily expect to live another ten years. Many studies report a good chance of another 20 or 30 years. This will depend on your current health and treatment history. Your CD4 count when you start treatment is related to your chance of getting a CD4 count that is higher than 500 after treatment. A count over 500 is considered normal. In a recent study, the following percentages of people reached a CD4 count over % of patients who started with a CD4 count above % of patients who started with a CD4 count % of patients who started with a CD4 count less than 100 Even if your CD4 count doesn t reach 500, you can still lead a long and health life, often at least for another 10 years. It is just better to start earlier if you have this option. About 25% of people who start with a CD4 count that is under 50 may have additional health issues after starting treatment. This is called IRIS (Immune Reconstitution Inflammatory Syndrome). It refers to a range of illnesses, including TB and CMV, that are present when you start treatment, but which your immune system was too weak to recognise and respond to. This is usually easily managed and only occurs in the first few months, I have been on Truvada and efavirenz for a while now. In the last few months I have noticed some facial & buttocks fat loss. From what I read, changing meds seems to be the best option to reduce the fat loss. Do you think it is a good idea to talk to my doctor about changing my meds? I m also considering using a filler. Any symptom that worries you, is something to talk about with your doctor. The first step is for your doctor to look for any evidence of changes. Sometimes it is easy to worry about symptoms, which are not real or progressing. The combination you are using is not commonly linked to fat loss, but has been reported. Switching studies have been in people using either d4t (stavudine) or AZT (zidovudine) in their combination. If you previously used these meds then switching now is unlikely to help. If your symptoms are confirmed and are still mild, they may not need any corrective treatment. If you have moderate of severe facial fat loss, then in the UK a treatment called polylatic acid (PLA, New-Fill) could be used. Technically, this is not a filler, but a treatment that generates new collagen growth. No permanent filler has been approved in Europe for HIV-related fat loss. It is very difficult for surgery to safely and effectively treat fat loss from the buttocks. Exercise and weight training to develop muscle growth to cover the fat loss may be difficult but it are very safe. Implant in the buttocks have been reported as having a high rate of difficult complications. The African Eye Voice 8 February May 2010

9 CAN T LET MY MEDS MESS UP MY NIGHT. THEY CAN WAIT If you don t take it, talk about it. Hot date or not, side effects shouldn t come between you and your anti-hiv medication. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at

10 TREATMENT HIV and Human Ageing Badru Male, Treatment Advocate/Technical Advisor TAET An old saying that Time will tell is being realised and now time is telling. We casually use the saying when the future cannot be predicted or fore telling becomes a mystery. It is now almost 30 years since the Human Immunodeficiency Virus (HIV) was discovered by Robert Gallo and Luc Montagnier. At that time very little was known about this Virus. This encouraged researchers and scientists to get to know more about it and better knowledge was being acquired from these researches and studies. 30 years later, do we really know and understand how HIV the virus manifests and how best infection by the virus can be managed? HIV and ageing is the topic nowadays that everybody is looking at very closely and with much interest. It is a great concern for those living with HIV, the pharmaceutical companies that manufacture the antiretroviral drugs (ARVs), the consultants that manage HIV care and treatment, and researchers globally. Still my concern is, the HIV virus does not live in the laboratory and still it cannot survive without a potential host. In other words considering ageing as in human ageing is not the only issue, but the ageing of the virus itself. Ageing is the accumulation of changes in an organism or object over time. This includes the H and the V in the HIV. Ageing in humans refers to a multidimensional process of physical, psychological, and social change. Some dimensions of ageing grow and expand over time, while others decline. Reaction time, for example, may slow with age, while knowledge of world events and wisdom may expand. Research shows that even late in life potential exists for physical, mental, and social growth and development. Ageing is an important part of all human societies reflecting the biological changes that occur, but also reflecting cultural and societal conventions. Age is usually measured in full years - and months for young children. Roughly 100,000 people worldwide die each day of agerelated causes. Chronological ageing, referring to how old a person is, is arguably the most straightforward definition of ageing and may be distinguished from social ageing (society s expectations of how people should act as they grow older) and biological ageing (an organism s physical state as it ages). There is also a distinction between proximal ageing (age-based effects that come about because of factors in the recent past) and distal ageing (age-based differences that can be traced back to a cause early in person s past life or family history. The main concerns here are that the effects of long term living with HIV are quite the same as the effect of ageing. Physically human ageing results into other health risks such as cardiovascular disease (CVD), thinning of the born density (Osteoporosis), Chronic Kidney disease (CKD), mental weaknesses including dementia and general body immunity weakness. Studies show that living with HIV doubles the risk of the above illnesses when at old age strikes. This makes HIV infection in old age more complex to manage and control. On the other hand, micro-organisms also have their own life span that is influenced by the environment, reproductive processes or mutations and time. The HIV virus overtime gets exposed to light, chemicals, radiations and treatments (ARVs). The wild type virus is the one that has not been exposed to ARVs and the other is the non-wild. As the population of people living with HIV globally grows and the number of people on HIV treatment increases. In a matter of years in time, the global dominant strain of HIV will be the nonwild type. Assuming that all people taking treatments adhere to their regimens and achieve undetectable levels, treating HIV infection will become not only a global HIV prevention strategy but also make the dominant virus weaker and weaker. Suppressive HIV therapy considerably reduces the infectiousness of the people taking it and may make them altogether uninfectious according to NAM prevention fact sheets. HIV treatment is in itself a prevention intervention. A study in San Francisco (Porco 2004) calculated that on a population level the average viral load, and therefore infectiousness, of gay men in the city had been cut by two-thirds since the introduction of antiretroviral therapy (ART), and on an individual level, by 2008, Swiss researchers released a (contentious) statement (Vernazza 2008) saying that People with HIV who are not suffering from a sexually transmitted infection and who are on fully suppressive antiretroviral therapy do not transmit the virus through sexual contact. Misrepair-Accumulation Theory: This very recent novel theory by Wang et al also suggests that viral ageing is the result of the accumulation of Misrepair. Important in this theory is to distinguish among damage which means a newly emerging defect BEFORE any reparation has taken place, and Misrepair which describes the remaining defective structure AFTER (incorrect) repair. The key points in this theory are: There is no original damage left unrepaired in a living being. If damage was left unrepaired viruses would not mutate but die naturally. Misrepair, the repair with less accuracy, does not happen accidentally. It is a necessary measure of the reparation system to achieve sufficiently quick reparation in situations of serious or repeated damage, to maintain the integrity and basic function of a structure, which is important for the survival of the virus Hence the appearance of Misrepair increases the chance for the survival of individual, by which the individual can live at least up to the reproduction age, which is critically important for the survival of species. Therefore the Misrepair mechanism was selected by nature due to its evolutionary advantage. However, since Misrepair as a defective structure is invisible for the reparation system, it accumulates with time and causes gradually the disorganization of a structure of the virus. This is the actual source of ageing of a virus. Ageing hence is the side-effect for survival, but important for species survival. Thus Misrepair might represent the mechanism by which organisms are not programmed to die but to survive (as long as possible), and ageing is just the price to be paid. A virus survives by multiplying and mutating. Mutation can result in several different types of change in DNA sequences that can have no effect, alter the product of a gene, or prevent the gene from functioning. Therefore as the virus mutates several times the misrepair process makes it weaker, unable to perform its originally intended lifespan duties. That is to be able to multiply and also infect other human cells. When this happens, years to come might witness a transformed HIV virus that is hard to transmit or that may have little effect on the immune system. Time will tell. References; 1. HIV Medicine The Swiss study Volume 9, issue 1, January (2008) 2. NAM factsheet Prevention of HIV infection. 3. Wikipedia Website. Old Age sighted on 15th February 2010> The African Eye Voice 10 February May 2010

11 TREATMENT Adherence and behaviour There is no cure for HIV. However, major advances in treatment have truly changed what it means to live with HIV. An HIV diagnosis does not have to mean your life is over. Ingrid Kloet HIV Treatment Advocate Many HIV treatment choices, including once-a-day regimens, exist. HIV treatment can help lower your viral load and increase your CD4 (T-cell) count Successful HIV treatment may also allow you to live a longer life. The earlier in your disease that treatment is started, the greater the chance may be for treatment success. Being on treatment and remaining undetectable may also reduce your risk of spreading (transmitting) the HIV virus to others. It s important to understand some of the myths and realities of starting treatment. That way you can work with your healthcare provider to make informed decisions about your health and treatment. You should also learn about your lab tests, the goals of treatment, and treatment choices you have. All of these topics are available here. You should also know that HIV drugs can cause side effects. Discuss the possible side effects with your doctor. This information is important for you to know as you live with and manage HIV. Remember, you have the power to take charge of your own health! You may have heard things from friends or others about HIV treatment that may or may not be true. It s better to address any fears you may have, and to learn some of the realities of starting HIV treatment at the same time. If you re starting or changing your therapy, talk to your doctor about which HIV treatment plan might work for you. Keep in mind that you and your healthcare provider will decide which meds are right for you by thinking about a number of factors. These might include lifestyle, possible side effects, dosing frequency, number of pills, lab- values and HIV resistance. The term treatment adherence refers to the ability of the patient to develop and follow a plan of behavioural and attitudinal change that ultimately serves to empower him/her to improve health and self-manage a given illness. The term medication adherence in HIV/AIDS care specifically refers to the ability of the person living with HIV/AIDS to be involved in choosing, starting, managing and maintaining a given therapeutic combination medication regimen to control viral (HIV) replication and improve immune function. The preferential term compliance rather than adherence has long-standing support given the historical roots of the semantic issues. Medication adherence as a major challenge to the implementation of various regimens is certainly not unique to HIV/AIDS. Tuberculosis and diabetes but also chronic heart disease and hypertension are just some examples of diseases with their respective care models and solutions that can be in part applied to HIV/AIDS. It is not only complex to attempt to define medication adherence, identify the most reliable related measurement tools and promote only the most rigorously tested interventions but may not even be possible due to lack of essential data. Treatment guidelines for HIV meds exist to help healthcare providers make suggestions for treatment. The British HIV Association {BHIVA} treatment guidelines serve this purpose. Also covered in the guidelines are HIV treatment goals, recommendations for when to start treatment, and use of HIV meds in certain types of people such as pregnant women. Download a helpful fact sheet to learn more about the BHIVA treatment guidelines. I hope this all is working after reading, only YOU can make the decision the change your behaviour and keep healthy by taking care of yourself Special Message Service users especially from the African Communities in the UK, need to continue building on the culture of keeping themselves updated and aware of current research in HIV treatment. Therefore, magazines such as the African Eye come in handy to help the process of updating targeted audiences on HIV treatment trends. HIV still is and remains a life threatening virus, but treatment with anti-hiv medicines dramatically slows the progress of the disease and has significantly reduced the number of deaths caused by AIDSrelated illnesses. Mr Luke Kwamya, Special Advisor TAET February May The African Eye Voice

12 Generic name Trade name Formulation Standard adult dose Pills/day Major side-effects Food restrictions Nucleoside reverse transcriptase inhibitors (NRTIs) 3TC, lamivudine Epivir 150* and 300mg tablets 150mg twice a day or 300mg once a day Abacavir Ziagen 300mg tablet 300mg twice a day or 600mg once a day 2 1 Common: Nausea, vomiting, diarrhoea, headache, abdominal pain, insomnia, rash, tiredness 2 Common: Rash, nausea, vomiting, diarrhoea, fever, headache, loss of appetite, tiredness Rare: Hypersensitivity reaction AZT, zidovudine Retrovir 100 and 250mg* capsules 250mg twice a day 2 Common: Nausea, vomiting, fatigue, headache, dizziness, weakness, muscle pain Rare: Blood disorders, lipoatrophy d4t, stavudine Zerit 15, 20, 30 and 40mg* capsules People over 60kg: 40mg twice a day People under 60kg: 30mg twice a day ddi, didanosine Videx 25, 50, 100, 150 and 200mg* tablets antiretroviral drug chartdrugs People over 60kg: 400mg once a day or 200mg twice a day People under 60kg: 250mg once a day or 125mg twice a day 2 Common: Lipoatrophy, peripheral neuropathy, nausea, diarrhoea, abdominal pain, dizziness, tiredness, rash Rare: Pancreatitis 2 or 4 (chewed or dissolved in water) licensed in the European Union December 2008 Common: Peripheral neuropathy, nausea, vomiting, diarrhoea, rash Rare: Pancreatitis Take with or without food Take with or without food Take with or without food Take with or without food Take at least two hours after and 30 minutes before eating ddi, didanosine (extended release) VidexEC 125, 200, 250 and 400mg* capsules People over 60kg: 400mg once a day or 200mg twice a day People under 60kg: 250mg once a day or 125mg twice a day 1 or 2 Common: Peripheral neuropathy, nausea, vomiting, diarrhoea, rash Rare: Pancreatitis FTC, emtricitabine Emtriva 200mg capsule 200mg once a day 1 Common: Nausea, vomiting, diarrhoea, abdominal pain, headache, dizziness, weakness, rash Take at least two hours after and two hours before eating or drinking anything except water Take with or without food Nucleotide reverse transcriptase inhibitors (NtRTIs) Tenofovir Viread 300mg tablet 300mg once a day 1 Common: Nausea, vomiting, diarrhoea, dizziness, low blood phosphate levels Rare: Kidney problems Take with or without food NRTI / NtRTI fixed dose combinations 3TC / AZT Combivir Tablet comprising 150mg 3TC and 300mg AZT One tablet twice a day 2 See 3TC and AZT Take with or without food 3TC / abacavir / AZT Trizivir Tablet comprising 150mg 3TC, 300mg abacavir and 300mg AZT One tablet twice a day 2 See 3TC, abacavir and AZT Take with or without food 3TC / abacavir Kivexa (EU) Tablet comprising 300mg 3TC and 600mg abacavir One tablet once a day 1 See 3TC and abacavir Take with or without food FTC / tenofovir Truvada Tablet comprising 200mg FTC and 300mg tenofovir One tablet once a day 1 See FTC and tenofovir Take with or without food NRTI / NtRTI / NNRTI fixed dose combinations FTC / tenofovir / efavirenz Atripla Tablet comprising 600mg efavirenz, 200mg FTC and 300mg tenofovir One tablet once a day 1 See FTC, tenofovir and efavirenz Take without food Non-nucleoside reverse transcriptase inhibitors (NNRTIs) Efavirenz Sustiva (EU) 600mg tablet* and 200mg capsule 600mg once a day 1 Common: Rash, dizziness, sleep disturbance, abnormal dreams, impaired concentration, nausea, headache, tiredness Take with or without food

13 Rare: Depression, psychosis Etravirine Intelence 100mg tablet 200mg twice daily 4 Common: Rash, diarrhoea and nausea Take with food Nevirapine Viramune 200mg tablet 200mg once a day for two weeks then 400mg once a day or 200mg twice a day 2 Common: Liver toxicity, allergic reaction, rash, nausea, headache Rare: Stevens Johnson syndrome Take with or without food Protease inhibitors Atazanavir Reyataz 100, 150*, 200 and 300mg capsule 300mg with 100mg ritonavir once a day 2 Common: Nausea, diarrhoea, rash, abdominal pain, headache, hyperbilirubinaemia Take with food Darunavir Prezista 300mg tablet 600mg with 100mg ritonavir twice a day 6 Common: Diarrhoea, nausea, headache Take with food Fosamprenavir Telzir 700mg tablet 700mg with 100mg ritonavir twice a day 4 Common: Lipodystrophy, nausea, vomiting, diarrhoea, rash, abdominal pain, headache, dizziness, tiredness, tingling around the mouth Indinavir Crixivan 200, 333 and 400mg* capsules 800mg three times a day 6 Common: Kidney stones, abdominal pain, liver abnormalities, lipodystrophy, muscle pain, nausea, vomiting, diarrhoea, rash, headache, dry skin and mouth, tiredness Lopinavir / ritonavir Kaletra Aluvia (resource-limited settings) Tablet comprising 200mg lopinavir and 50mg ritonavir Nelfinavir Viracept 250mg tablet 1250mg twice a day or 750mg three times a day Two tablets twice a day 4 Common: Lipodystrophy, raised liver enzymes, nausea, vomiting, diarrhoea, abdominal pain, rash, tiredness, weakness, headache 10 9 Take with or without food Take one hour before or two hours after food or take with a light, low-fat snack Take with or without food Common: Lipodystrophy, nausea, vomiting, diarrhoea Take with food Ritonavir Norvir 100mg capsule Full dose: 600mg twice a day To boost other PIs: mg once or twice a day Common: Lipodystrophy, nausea, vomiting, diarrhoea, abdominal pain, muscle pain, headache, weakness, numbness around the mouth Take with food to avoid nausea Saquinavir Invirase 200mg capsule and 500mg tablet* 1000mg with 100mg ritonavir twice a day 6 Common: Lipodystrophy, nausea, vomiting, diarrhoea, abdominal pain, muscle pain, headache, rash, fever, tiredness, dizziness Take within two hours of food Tipranavir Aptivus 250mg capsule 500mg with 200mg ritonavir twice a day 8 Common: Lipodystrophy, nausea, diarrhoea, abdominal pain Take with food Fusion inhibitor T-20, enfuvirtide Fuzeon Powder reconstituted in water Injection of 90mg under the skin twice a day Common: Injection site reaction, respiratory tract infections No food restrictions not to size CCR5 inhibitor Maraviroc Celsentri 150*, 300mg tablets 300mg twice a day, 150mg twice a day with all ritonavir-boosted PIs except fosamprenavir and tipranavir or 600mg twice a day with efavirenz 2 4 Common: Headache, dizziness, nausea, weakness, flatulence Take with or without food Integrase inhibitor Raltegravir Isentress 400mg tablet 400mg twice a day 2 Common: Headache, diarrhoea, nausea Take with or without food *Formulation(s) shown. Includes ritonavir capsule(s). The editors have taken all reasonable care in the production of this publication. Neither NAM, nor the editors, can be held responsible for any inaccuracies or mis-statements of fact beyond their control. Inclusion of information on any treatment or therapy does not represent an endorsement of that treatment or therapy by NAM or the editors. The information should always be used in conjunction with professional medical advice. This drug chart is produced by an organisation called NAM. NAM provides people working in the global fight against HIV & AIDS with up to date and impartial information. Please visit us at our website where you can read the latest HIV news and sign up for free updates. NAM, Lincoln House, 1 Brixton Road, London, SW9 6DE. info@nam.org.uk Web

14 TREATMENT Less resistance with FTC than 3TC when combined with tenofovir Michael Carter, Freelance HIV editor/nam Amongst patients experiencing a rebound in viral load, those taking 3TC (lamivudine, Epivir) in combination with tenofovir (Viread) were more likely than those taking FTC (emtricitabine, Emtriva) and tenofovir to develop a number of key resistance mutations, report investigators in the online edition of AIDS. Furthermore, virological failure with 3TC and tenofovir was associated with the emergence of a mutation that can confer resistance to the new non-nucleoside reverse transcriptase inhibitor (NNRTI), etravirine (Intelence). Although most patients take FTC and tenofovir in a co-formulated pill (Truvada, or Atripla when efavirenz is also included), the investigators nevertheless believe that their results have clinical significance. They write, budget restrictions and the perception of a fundamental equivalence between 3TC and FTC may lead to this possibly suboptimal prescription. 3TC and FTC are nucleoside reverse transcriptase inhibitors (NRTIs) and are a key component in most first-line triple drug antiretroviral regimens in use today. They are often regarded as being equally potent, and virological failure with both drugs has been associated with the emergence of the M184V resistance mutation. However, laboratory studies suggest that FTC may have a longer half-life than 3TC. Moreover, there is evidence suggesting that FTC also has a favourable interaction with tenofovir, which further extends its half-life. To see if such characteristics translated into significant differences in the activity of the two drugs in patients, Italian investigators looked at resistance mutations emerging in patients who took 3TC/tenofovir or FTC/ tenofovir-containing regimens and experienced virological failure. A total of 859 patients were included in the investigators analysis. All took 3TC/tenofovir or FTC/tenofovir as part of a triple-drug antiretroviral treatment regimen. This treatment suppressed viral load to undetectable levels for at least six months before rebounding to detectable levels. The period of analysis was 2002 to Over two-thirds of patients had previously been treated with a sub-optimal combination of drugs. Moreover, at the time of virological failure, 20% were taking a triple NRTI combination and 10% an unboosted protease inhibitor. Resistance tests were performed after viral load rebounded. Statistical analysis showed that patients taking 3TC/tenofovir were significantly more likely than those taking FTC/tenofovir-containing regimens to develop a number of key resistance mutations. These included: K70R (3TC, 16% vs. FTC, 4%, p = 0.002). MI84V (3TC, 53% vs. FTC, 35%, p = 0.031). T215F (3TC, 11% vs. FTC, 4%, p = 0. 02). Furthermore, patients treated with 3TC were more likely to develop combinations of these resistance mutations. In addition, three NRTI resistance mutations emerged in 6% of 3TC treated patients but only 1% of those taking FTC. The investigators also noted that the Y181C mutation, which confers resistance to NNRTIs, was found in 16% of those who took 3TC, but in only 8% of those who were treated with FTC. This finding is of clinical relevance, write the investigators, mutations at reverse transcriptase codon 181 strongly decrease efficacy of etravirine, the latest licensed and the first NNRTI expected to be active in many NNRTI-experienced patients. The investigators conclude, failing a 3TC/tenofovir-containing regimen was associated with an increased risk of emergence of specific drug resistance mutations with respect to failing an FTC/ tenofovir-containing regimen. Reference Maserati R et al. Emerging mutations at virological failure of HAART combinations containing tenofovir and lamivudine or emtricitabine. AIDS 24 (advance, online publication), for hiv information This news article has been taken from NAM s website 2O10 Key Conferences/ Training BASHH/BHIVA Spring Conference Apr 2010 until 23 Apr BASHH/BHIVA Spring Conference Manchester April UK Community Advisory Board Meetings 2010 MRC London. HIV10 Congress is the 10th International Congress on HIV and Drug Therapy in HIV Infection to be held in Glasgow November The African HIV treatment Information Advocates Training, Feb - December 2010 Across UK AIDS 2010 Vienna July XVIII International AIDS Conference The African Eye Voice 14 February May 2010

15 February May The African Eye Voice

16 TREATMENT NEWS HIV treatment may prevent at least nine out of ten transmissions Gus Cairns: Editor, HIV Treatment Update & Kelly Safreed-Harmon A study of HIV transmission between long-term, HIVserodiscordant heterosexual couples in Africa has found that the chance of transmission is reduced by at least 90% if the HIV-positive partner is on antiretroviral therapy. As a comparison, this is better than the efficacy of 100% attempted condom use, which is in the order of 85% (with a high margin of uncertainty). 1999; baby born in Tanzania; mothers not tested, nothing to prevent HIV transmission. photo Jeanette Meadway There was one transmission from a partner who was taking HIV therapy, however, and presenter Deborah Donnell said that this indicated that the advice to serodiscordant couples that they should maintain safer sex should not change, even when the HIV-positive partner was on treatment. The proportion of couples who had unprotected sex actually decreased when the HIV-positive partner started treatment, allaying fears about behaviour change, at least in this population and in the short term. The other important finding from this study was that untreated partners with CD4 counts under 200 cells/mm3 were approximately five times more likely to transmit HIV than those with CD4 counts over 350 cells/ mm3, strengthening the case for extending antiretroviral (ARV) provision to all people with low CD4 counts. The Partners in Prevention study This was a substudy in the Partners in Prevention study, a large randomised controlled study designed to see if treatment for the genital herpes virus HSV-2 could reduce HIV transmission. The main study, as reported at last year s IAS Conference in Cape Town, found that herpes treatment was ineffective as HIV prevention. This substudy was purely observational it did not randomise people to HIV therapy so its results can t be regarded as conclusive. Donnell remarked that for that we will have to await the results of the HTPN 052 study, which is currently underway. In the study, 3381 serodiscordant couples from seven countries from south and east Africa were included. The average age of women in the study was 29 and men 37, and two-thirds of the HIV-positive partners were women. All the HIV-positive partners had HSV-2. At baseline about 30% of partners reported having uprotected sex with their main partner in the previous month. None were on HIV treatment at baseline, and one of the study inclusion criteria was that the positive partner had to have a CD4 count over 250 cells/mm3. The average baseline CD4 count was over 400 cells/mm3. CD4 counts were taken every six months and HIV status assessed. ARV therapy was ascertained by self-report: there was no independent confirmation that people were indeed on HIV therapy. Women taking shortterm therapy for the prevention of mother-to-child transmission (PMTCT) were not counted as being on ARVs, and about onethird of women in fact took ARVs for this purpose at some point. During the study 349 people, about 10% of the total, initiated HIV treatment. Approximately half of people initiating treatment had CD4 counts under 200 cells/ mm3 at initiation and one-third between 200 and 350 cells/ mm3. There were 151 new HIV infections in the study. One important aspect of the study was that HIV viruses in transmitting and infected partners were sequenced to show that the new infection had indeed come from the long-term partner, and 108 were thus linked: so 28.5% of infections The African Eye Voice 16 February May 2010

17 TREATMENT NEWS came from someone who was not the primary partner. Five of these 108 transmissions were excluded because the partner s ARV status was unknown, and one because the positive partner was a woman taking ARVs for PMTCT. Only one of the transmissions came from a partner taking ARVs. When HIV incidence was calculated in terms of personyears of follow-up, antiretroviral users and their partners had a transmission rate of 0.39 per 100 person-years (1 case 256 person-years) (95% confidence interval [CI], ). Antiretroviral non-users and their partners had a transmission rate of 2.23 per 100 person-years (102 cases 4851 person-years) (95% CI, ). This meant the relative risk of transmission from a partner taking ARVs, when adjusted for time on study and CD4 count, was 0.08; a 92% reduction in HIV transmission. Some significant differences were observed among subsets of study participants. A higher proportion of men (12%) than women (9%) initiated antiretroviral therapy (p = 0.01). Men initiated antiretroviral therapy at a median CD4 cell count of 192 cells/mm3, while the median for women was 204 cells/mm3 (p = 0.05). The single case of transmission involved a man who initiated ARVs 18 days before his 12- month study visit. At this visit his partner tested positive for HIV, having been negative at month 9. His CD4 count was in the 200 to 350 cells/mm3 range. Untreated partners were far more likely to transmit HIV if they had low CD4 counts. Annual HIV incidence among HIV-negative partners was 8.79% if their partner had a CD4 count under 200 cells/mm3, 2.79 for CD4 counts between 200 and 350 cells/mm3, 1.70 between 350 and 500 cells/mm3, and 1.82 for CD4s over 500 cells/mm3. Unprotected sex declined when partners started ARVs. Before ARV treatment, 6.2% of partners reported unprotected sex in the previous month; 3.7% reported it after treatment initiation. There was no change in sexual frequency. This study had a number of limitations: it was not randomised, ARV status relied on self-report, and transmission and behaviour data were only followed for a maximum of two years. Using a single transmission to calculate the risk of infection by a person on ARVs involves sophisticated statistical analysis and, as noted above, very wide confidence intervals. Audience members also commented that the incidence of sexually transmitted infections was low (as, of course, were herpes symptoms) and that a similar study needed to be conducted in gay men. Nonetheless, Donnell commented, ARVs appear to confer a significant prevention benefit across all CD4 ranges, and this study goes some way towards quantifying that more accurately. Reference Donnell D et al. ART and risk of heterosexual HIV-1 transmission in HIV-1 serodiscordant African couples: a multinational prospective study. Seventeenth Conference on Retroviruses and Opportunistic Infections, San Francisco, abstract 136, For further news on the recent CROI Conference please visit This article is reporduced with kind permission from NAM for hiv information Empowering People, Changing Lives Housing Support Income & Budgeting Skills Benefits HIV Specific Support Groups SE Team Manager Basement Unit 03, Trowbray House,108 Weston St London SE1 3ER Phone: Fax: southeastteam@hestia.org Work & Volunteering Support after diagnosis We can help and support you if you live in Lambeth, Soutwark or Lewisham and are living with HIV Please note that we do not provide accommodation but can help you find suitable housing February May The African Eye Voice

18 TREATMENT Tackling Tuberculosis In England Local NHS Has Made Progress But Much More Needs To Be Done - Major New Report By Elias Phiri, Head of Awareness Programmes, TB Alert Local NHS services to tackle tuberculosis (TB) in England are improving, but worryingly nearly 1 in 5 (18%) TB hot spot areas, and 6 in 10 (60%) areas overall, still don t have a strategy in place to tackle the disease - according to a new report launched on 3rd December 2009 during the British Thoracic Society (BTS) 2009 Winter meeting. The report was compiled by the All Party Parliamentary Group on Global TB (APPG), the BTS, TB Alert (TBA) and the Royal College of Nursing (RCN). The study analyses the results of a survey, conducted between August and September 2009, among 112 Primary Care Trusts (PCTs) in England, and reveals some positive progress in the delivery of NHS TB services compared with a similar survey in 2007 e.g. over 9 in 10 (93%) have a senior designated lead to tackle TB - nearly double the amount reported in The survey also shows, however, some worrying deficiencies in local NHS planning and delivery of TB services: 6 in 10 (60%) have no current strategy to tackle TB, no PCT consulted people with TB or at risk communities in developing their strategy, etc. Full report Tackling tuberculosis in England: the PCT response to the challenge Second National Tuberculosis Survey of English Primary Care Trusts can be download on: or contact info@tbalert.org. Tuberculosis Action Group- PLWHIV Get Involved The TB Action Group (TBAG) is a network for people who are or have been affected by TB in the UK. The group aims to provide a patient voice within the TB sector and to raise awareness of the patient experience amongst health professionals and communities affected with TB. TBAG work to increase the public profile of TB, provide peer support to patients current going through treatment and to help improve TB services in the UK, based upon their personal experiences. The group is supported by TB Alert but independently decides upon their actions and areas of activity. Members meet quarterly in London, with expenses covered by TB Alert, and communicate via and their online webspace. There are plans to start-up another TBAG in North England, probably in Manchester or Leeds or West Midlands area. New TB Campaign: The Truth About Tuberculosis TB Alert, a TB charity has launched a new awareness campaign, The Truth About TB, at The website describes the symptoms of TB, helps people identify if they are in a high risk group, and explains the treatment that cures TB. It also features a 10 minute information video, which explains TB through the stories of people who had and recovered from the illness. Health professional, third sector staff working with people at risk of TB (BME communities, PLWHIV, etc) and PLWHIV who have been affected by TB are encouraged to visit the website. For more information, please contact Tessa Marshall on or via info@tbalert.org Holly Credit Services Financial Service for the Community Registered with the Office of Fair Trading - Licence Number Do you need extra cash? We offer low cost loans up to 500 in value and can arrange for money transfers to Uganda Why not call us today on to arrange an appointment Mobile: Mobile: or drop into our offices at Acorn House Cherry Orchard Road Croydon, Surrey CR9 6DA The African Eye Voice 18 February May 2010

19 TREATMENT Who is a Treatment Advocate? by Paul Cliff, HIV Campaigner Dear Reader, I am a person with HIV and I am assuming that you are too; this is the basis on which I am writing this short article. So then, what makes a Treatments Advocate? What does it involve? To start with, the Oxford English Dictionary defines to advocate as to publicly recommend or support. In HIV, advocacy does not have to be public it can just as well be private between an individual and their doctor. A treatments advocate is a person who has knowledge of current treatments, and who brings this knowledge into discussions with doctors, commissioners and so on. This does not have to be great indepth knowledge, but will be enough to negotiate the best available regimen. Such ability to negotiate depends on confidence. Therefore an advocate has two qualities: Knowledge and Confidence. In our dealings with doctors, nurses, pharmacists, politicians, pharmaceutical company representatives and so on, we have a choice: we can either do as we are told without asking questions, or we can ask questions in order to get a better service and better outcomes. The first choice is right for some people, but it comes with some reservations not asking questions, not bringing certain things to the doctor s attention, can have a real knock-on effect on health. The second option however can pay real dividends it can mean a regimen that it easy to take, with few side-effects and few pills - but is it easier said than done? The underlying message here is that we have every right to ask questions about anything. There are several ways of building ourselves up towards this. If we have access to the internet (and most people these days do) we can visit the site for straightforward up to date information, and to make this knowledge effective we might attend a training session. However, a training session is just the start. We can leave a training session with up-to-date information on treatments, but HIV is unusual in that developments happen relatively fast. What was accurate five years ago may not be accurate now. We have to keep up with this pace of change, or as an American treatments advocate said to me many years ago, the virus mutates and so must we. Now, I don t like the thought of personally mutating, so I re-word this fine sentiment as the epidemic evolves, and so must we. We might evolve by gaining the confidence to walk into the doctor s consulting room knowing that we are her or his equal; that the doctor has specialist knowledge (medicine, how HIV works) and we also have specialist knowledge (living with HIV, how our body actually feels). The onus is not entirely on us, though. The General Medical Council (GMC) issues guidelines to doctors that clearly tell doctors they should: Listen to patients and respond to their concerns Give patients the information they want in a way they can understand Respect patients right to reach decisions about treatment This is the professional framework into which we can bring our own advocacy, knowing that our right to do so is enshrined in these GMC Guidelines. We can build up our confidence to exercise this right in at least two ways: by joining a patients forum if our clinic has one (some do, but many don t) and by signing up to an African Eye training session. Details of these can be found on For Treatment News, HIV Treatment Advocacy Training/ Forums and HIV Treatment Information Events Magazine Survey Do you find this publication useful to you in managing your condition? Do you read it online or as a printed magazine? Do you find the language used clear and easy to follow? Where are you based? Do you have any suggestions on how we may improve this publication? Thank you please fill in and Fax to yes no The African Eye Voice Magazine Order Information If you would like to order extra copies of the magazine please send a stamped SAE to: The Editor The African Eye Voice Magazine Central Office Phoenix Yard, 65 Kings Cross Road, London, WC1X 9LW 1 50p, , , Due to lack of resources we are unable to provide extra copies for free The African Eye Voice 19 February May 2010

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