ACW Interview: Professor Mark Wainberg

Professor Mark Wainberg of McGill University AIDS Centre and the co-chair of the upcoming International AIDS Conference (IAC), was recently in New Delhi, India to attend the first national conference of the AIDS Society of India. While there, he spoke with Health and Development Networks (HDN) about care, treatment and support for people living with HIV and about his hopes for the next IAC in Toronto, 2006.

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ACW: A great deal of emphasis has been placed on the scale-up of antiretroviral (ARV) drugs for people living with HIV/AIDS at this conference. In your opinion, how vital are ARVs?

Mark Wainberg: The main way to help people who are HIV positive live longer is to give them antiretroviral drugs. There is no substitute for that. Countries like India can distribute very cheap drugs made by generic companies like Cipla, Ranbaxy, to patients here [in India] because it has really become very inexpensive. And from everything we know, giving people those drugs will not just help them survive, but it will also diminish rates of transmission. So there is a public health benefit to provide these drugs.

ACW: But how will we keep the millions of people alive today, who are waiting for antiretroviral drugs to become available and affordable?

Mark Wainberg: The best way to keep people living with HIV/AIDS (PWHA) alive is to ensure that they have proper nutrition, proper emotional support, and opportunities to continue to feel that their lives are meaningful and worthwhile. Ultimately, they also have to want to live and they have to be motivated to live. This means that they need the support of their families and their friends.

At the same time, we also need to provide these people with efficient counseling so that they don’t transmit HIV to other people. They need to be told to use condoms and they need to be encouraged to be a part of universal HIV/AIDS education programme, to talk about their disease.

This means we should not have stigmatization and discrimination. We should be open about talking about HIV and AIDS and this is one of the most efficient ways to clear myths that exist about HIV.

ACW: Do you think care and support initiatives have been given adequate attention?

Mark Wainberg: I think care and support initiatives have been remarkably successful [in India] and I hope that they will continue to be successful. A lot depends upon support from governments so that people can continue to do a very effective job. Also, I think agencies such as the Gates Foundation are now very involved and committed [to India] and also are making a difference here. I think as well that we cannot be complacent, we cannot rest on our laurels, and we need to continue to always talk about AIDS in a very outspoken manner.

ACW: But in India, there is a perception that care and support doesn’t always get adequate attention. People are afraid to speak out about their status because of stigmatization, and therefore care and support doesn’t come into picture at all.

Mark Wainberg: I think first of all we should be realistic and recognize that to come out and speak openly about HIV, for somebody to say that I am HIV positive, is often very difficult.

In India, which is culturally not in the category of US or Canada, where there is more openness and more willingness to discuss such situations. I think care and support which is provided in a clandestine way to people who are not open about their HIV status, is better than no care and support. In the meantime, people who receive clandestine support should be encouraged to ultimately be more open about their HIV status. But from a cultural standpoint, we have to understand that we cannot transform a country like India overnight and it may take decades. These kinds of changes cannot happen so quickly.

ACW: In this context do you think the World Health Organization’s (WHO) ‘3 by 5’ initiative will be able to meet its goal of providing 3 million people in poor countries with ARVs by the end of this year [2005]?

Mark Wainberg: I don’t think that 3 million people will be on antiretroviral therapy by the end of 2005. But I think just this goal of attempting is worthwhile. So I praise the WHO initiative and even though I think that everyone of us will agree that if we had to chose today the regimen which would represent WHO’s ‘3 by 5’ regimen, probably we would not chose this regimen. Probably we would choose a few changes in this regimen, but it’s the only thing that has stockpiled. So it is better to be treated today with a regimen which is second best and live 2 or 3 years more, and in the meanwhile, continue to find new better drugs. That’s better than dying in 3 months.

ACW: However access to ARVs is limited. How do you ensure equitable distribution?

Mark Wainberg: You cannot. It is impossible to ensure equitable distribution. We always have to be careful to ensure that the perfect is not the enemy of the good. If you go to Africa where I think that the needs are even much greater than they are in India, of course it is easier to have efficient distribution of drugs in urban centres than in rural areas. And it will happen more efficiently and in greater numbers than in rural areas of Africa. I would like to have equality and equitable distribution but if we cannot have equitable, I take what I can get because it’s better than nothing. I will prefer to treat as many as I can than none at all if that is my choice.

ACW: What is the most important component of care and support apart from ARVs?

Mark Wainberg: While people living with HIV/AIDS (PWHA) are waiting for access to affordable ARVs, I think they need proper nutrition, proper emotional support, and they need treatment for opportunistic infections. If PWHA have tuberculosis (TB), they need to be treated properly for that and we need all those things to help them stay alive while they wait for ARVs.

ACW: What needs to be done at the country and global level to manage HIV-TB co-infection?

Mark Wainberg: Well, if somebody is co-infected with TB and HIV, individual physicians have to make a decision which [disease] should be treated first since it is very difficult to treat both diseases at the same time, because there are interactions among some of the drugs. I would say that if somebody has CD4 count that is fairly high, probably we should treat the TB first, especially if antiretrovirals are not available. On the other hand, if somebody has a very low CD4 count, you probably should treat the HIV first if you could get the antiretrovirals. If somebody has very low CD4 counts and no chance of getting antiretrovirals, and also has TB, then he or she is going to be in a very bad shape and is probably going to die.

ACW: How grave are the dangers of developing resistance to drugs and the birth of drug- resistant strains of HIV?

Mark Wainberg: If anything, the virus becomes a little weaker in this situation. But, this is not good news because drugs won’t work in the same efficient way, and we shouldn’t forget that people die of resistant viruses all the time. In the United States a major reason why people die of AIDS is because of drug resistance. So drug resistance is bad news and we have to manage the situation.

There is no question that as we embark on treatment scale-up [in India] there will be more drug resistance. It’s obvious. We have to hope that there will be more new drugs in the next 2, 3 or 4 years that India will have access to, and we will be able to use those drugs as second line regimens and people will survive. In India, there are not enough trained HIV physicians but there are major training programmes that are underway.

ACW: Is there a need to challenge global treatment policy so as to include other components of care and support apart from ARVs?

Mark Wainberg: The World Health Organization is sometimes very defensive about being criticized. But I think they should recognize and should not be ashamed to say that if the ‘3 by 5’ regimen has been stockpiled, practically this is what people must take to survive as we continue to work trying to change this regimen in the next 2 or 3 years. I don’t think that will be so terrible for them to admit. I am surprised that they didn’t do it already.

ACW: Have you heard about the new AIDS-Care-Watch campaign and do you support its initiatives?

Mark Wainberg: Yes, Certainly I have read about AIDS-Care-Watch. Do keep up the good work. I think it is fine but I certainly hope with all my heart that the people who need ARVs don’t have to wait much longer.


ACW: The next International AIDS Conference will be held under your guidance in Toronto in 2006. What kind of progress have you made to encourage Canadian authorities to relax their entry requirements vis-a-vis declaration of their HIV status?

Mark Wainberg: Canada has no official policy to discriminate against people living with HIV/AIDS. When somebody from other countries like India require a visa to go to Canada to attend the conference, the visa form may ask the question ‘Do you suffer from any form of chronic illness or infectious disease?’

If you say ‘yes’ for this question, there is a possibility that you will have difficulty obtaining the visa. So we are now working together with Canadian Government officials to change the visa application form. It will be easier for people to get visas because this question will be changed and will no longer appear on the visa application form.

ACW: Who is the International AIDS conference for?

Mark Wainberg: In the beginning International AIDS Conference began as a purely scientific conference and for scientists alone. Over the years it has transformed into a major political event and community forum. Today, it is for everybody, scientists, community activists, people living with HIV/AIDS, and for politicians.

ACW: What is the main focus of IAC 2006 going to be?

Mark Wainberg: I would like to see the major focus of the Toronto conference to be on a theme which was related to the theme at Bangkok [Access for All].

I think the Toronto conference should have something very similar theme. The question to be asked at this conference will be about the promises made in Bangkok, Barcelona and earlier too. By ‘we’ I mean the developed countries, which made promises to developing countries that they would work together towards access for all. Have we fulfilled that promise? Certainly not. Why haven’t we fulfilled the promises? What must we do now to keep our promises? These are some of the issues that would be raised.

ACW: What is going to motivate people to attend the conference?

Mark Wainberg: I think the Toronto conference should be of interest to people from the community both – living and not living with HIV/AIDS. It will be certainly an opportune time to interact.

Of course we also want the Toronto Conference to be a very important scientific conference in which many breakthroughs are presented with regard to treatment, basic science, vaccine development and so forth. The International AIDS Conference tries to bring all things to all people and I think we should continue to try to do that.

ACW: How will the IAC 2006 conference connect policy to the people?

Mark Wainberg: This is really the role that should be played by the Canadian Government. As organizers we have involved many ministers very early on in this process. The Canadian minister for health will see this as an opportunity to speak and involve ministers of health from other countries. In terms of helping to formulate a global policy, we hope that the Canadian minister for international cooperation, who directs Canada’s International Assistance Programme, will want to interact with ministers of health from developing countries and also with ministers who are responsible for assistance from France, US and UK, and others towards establishing programmes that will put money on the table for purchase of ARVs.

Fortunately, increasingly we do have politicians who are committed to this cause and they want to make a difference. Political will is much greater than it has ever been. Whether we will be able to translate political will into achievement is what we will find out. I think the Toronto conference has great potential to establish policy in a very forward-moving direction. I do hope that after Toronto conference, the next International AIDS Conference will be in India.

HDN Key Correspondent Team
Email: correspondents@hdnet.org

(April 2005)

ACW Interview: Dr D.M. Moloi, South Africa

Dr D.M. Moloi is the Senior Manager of the HIV & AIDS, STI & TB Directorate at the Department of Health and Social Development in Polokwane, South Africa.

ACW: The vast majority of people living with HIV/AIDS (PLWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context?

Dr Moloi: The progress is too slow based on the number of people enrolled. People do ‘qualify’, but don’t have access to antiretrovial therapy (ART) sites for various reasons such as lack of transport and funds needed to get there.

The consequences of not receiving ARVS are firstly an increased bed utilization rate and tuberculosis (TB) infection rate resulting in a raised mortality rate as we are currently in the phase where people who were infected are becoming ill or dying.

ACW: Aside from ARVS, which care and treatment options do you think are likely to add years or quality to someone’s life?

Dr Moloi: Firstly the treatment of opportunistic infections is essential as drugs are available, but regimens are not always used correctly.

Prophylactic treatment, for example isoniazid therapy (INH ) for TB which should be provided in a controlled setting as without this resistance could develop. DOTS (Directly Observed Short erm Treatment) should be used to address this. Cotrimoxazole, which is freely available and well applied. Diflucan would also be helpful, but this is not as yet freely available.

Nutritional support is vital as it prevents the CD4 cell count from dropping and can extend the time before ARV ‘s are taken. Basic things like the use of a balanced diet and support with micronutrients and supplements. The later are rather costly, however in the long term, this would be meaningful.

This does not replace ARVs. This is in fact what the South African Minister of Health is advocating.Palliative care must also be provided along the continuum of life.

ACW: What are the reasons for the rapid progression towards AIDS – related illnesses in developing countries? What measures can you recommend that may alleviate this more rapid progression.

Dr Moloi: Poverty, is by far one of the main differences between the rich and the poor countries. We need to scale up our poverty alleviation projects as well as providing nutritional support. I feel that the rich countries should assist us with funds in the forms of donors but without all the conditions and not with their own agendas either. Drugs could be supplied for the treatment of opportunistic infections.

ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis.

Is adequate or appropriate attention given at National or international level to preventing and treating these conditions? Would greater attention add years or quality to PWHA lives?

Dr Moloi: No, neither at national at international level. The TB control programme is failing. INH prophylaxis is not rolled out.

ACW: In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this will have on their day to day lives?

Dr Moloi: People living with HIV/AIDS need to be involved and empowered so that they are able to decide [issues related to care and treatment] for themselves. They must play an active role, such as form their own non governmental and community based organisations, and/or get more involved in government projects to help themselves.

ACW: What is your feeling about the initiatives and policy activities in 2005? Do you consider 2005 to be a significant year? What are your hopes?

Dr Moloi: In terms of the millenium development goals (MDG), the infant mortality rate is a concern. Use of polymerase chain reaction (PCR) to follow up babies as a strategy would help to address this.

Obviously the 3 by 5 goal is unrealistic, 2005 is a tipping point year.

My hopes are that the prevalence rate would be reduced. That people will stay negative and that challenges will be less than what they are at present.

(ends)

ACW Interview: Ms Margaret Muganwa

At the 10th International Conference on AIDS, organised by the Society for Women and AIDS in Africa (SWAA) in Kigali, Rwanda, AIDS-Care-Watch caught up with Ms. Margaret Muganwa, President of SWAA and spoke with her about essential care and treatment needs for people living with HIV/AIDS in Uganda, particularly for those who do not yet have access to life-saving antiretroviral treatment.

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ACW: The vast majority of people living with HIV/AIDS do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context?

MM: ARVs are available in Uganda but I must stress that ARVs are not everything. We must use other available options such as improving our diet. Some patients have developed severe side effects after taking ARVs. We have also experienced how it can revive people and boost the workforce.

In this regard, ARVs should be an available option to all Africans both women and men. Delay means that we lose valuable workforce, deny people a chance to elongate their lives. ARVs should be everyone’s right.

ACW: Comprehensive HIV/AIDS care ranges from HIV counselling and testing services through to palliative care for those close to the end of life. Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone’s life?

MM: I believe we can capitalise on some African foods to improve nutrition, we must be in a position to treat opportunistic infections –our hospitals should be in a position to treat common illness and give common drugs.

Medical insurance will mean that everyone can access care and treatment given in hospitals both private and public, regardless of whether one is rich or poor. Accepting the positive status (living positively) helps ease stress which we know can kill. Reduction of stigma will ensure unconditional love in the wider society.

ACW: One of the main differences between rich and poor regions in relation to HIV/AIDS is a more rapid progression towards AIDS-related illness in developing countries. What do you think might be the reasons for this difference? Can you recommend any measures that may alleviate this more rapid progression?

MM: This is principally because of the financial gap. In the west, they can access counselling, hospitals and medication to treat even simple ailments. They can access clean water, we don’t they have proper sanitation, not everyone in Africa can.

ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis. Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions?

MM: There are various efforts taking place in different countries and national governments have shown commitment. Uganda is an example but that is not all, there should be increased attention to care and treatment as well as prevention.

We appreciate efforts under Global Fund but if the money and support is able to reach every woman in the grassroots, then that will be the time we can say the battle is almost won.

ACW: Many – if not almost all – HIV-related interventions are concerned with doing things or providing material for people. In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?

MM: We should encourage everyone to test [for HIV], and for those who test positive, they should be given a chance to live positively without any fear of stigmatisation. People living with HIv/AIDS should be encouraged to take charge of their medication which should be available at the lowest level. This minimises the fatigue of travelling long distances and the transport costs. This way, they can go on with their daily duties without having to disrupt their work to travel to the capital for medication.

ACW: A number of initiatives and policy activities in 2005 – for example the Millennium Development Goals (MDG) review in September, pressure among G8 governments to accelerate debt relief and increase overseas development aid, and the final benchmark of the World Health Organisation 3x5 initiative – suggest that this year may be a crucial ‘tipping point’ that leads to greater attention to development in general and HIV/AIDS in particular. What is your feeling about this? Do you consider 2005 to be a significant year? What are your hopes?

MM: 2005 is a significant year for taking stock. Many of the goals may not be achieved but it will give everyone a chance to evaluate what has been done, how it has been done and what more can be done to achieve the goals on time.

SWAA looked at the WHO 3x5 and it was poorly gender mainstreamed. I hope we can have the opportunity to mobilize all countries who have not met their targets to do so.

My hope is that we (SWAA) can accelerate the process of policy formulation and review in whole of Africa. I hope we can mobilize all governments to be part of the process.

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This ACW interview was conducted by an HDN Key Correspondent. To contact the HDN Key Correspondent Team, please email correspondents@hdnet.org

ACW Interview with Mr K. K. Abraham, President of Indian Network for People Living with HIV/AIDS (INP+),

INP + is based in Chennai, India

ACW: The vast majority of people living with HIV/AIDS (PWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?

KK: India has over 5.3 million people estimated to be HIV positive out of which only five percent know their HIV status. World AIDS Day 2003, the Government of India (GOI) announced a strong policy commitment to provide antiretroviral therapy (ART) to 100,000 people with HIV/AIDS, with implementation starting on 1st April 2004. The global fund grant for the government is for enabling 137,000 people living with HIV be put on ARV in the next five years.

The primary responsibility for meeting the target lies with the National AIDS Control Organization (NACO) and the State AIDS Control Societies (SACS) with support WHO, UNAIDS and a wide partnership also committed to rapid expansion of access to AIDS treatment. But in reality only 7000 odd people who are living with HIV are accessing ARV from the government ARV roll out centers. There are lots of gaps like:

· No clear plans regarding how to sustain and scale up the national ARV roll out initiated in April 1, 2004.
· There is no clear strategy for procuring ARVs once the drugs supplied by WHO is over so that people who are already put on antiretroviral will continue to receive them.
· Negotiations with the Indian pharmaceutical industries to bring down the prices further with in India have not been started yet though such meetings were announced last year.
· No Systems and structures in place to reduce the impact of TRIPS agreement/intellectual property rights/patent issues on people living with HIV.
· ARV rolls out being a central-sponsored program no ownership from the state governments in terms of political commitment as well as resource allocations.
· Lack of clarity in terms of how to ensure equity in access to antiretrovirals by PLHA belonging to marginalized groups like sex workers, injecting drug users or men who have sex with men.
· Minimal or no efforts in working with the various marginalized groups like sex workers, injecting drug users or men who have sex with men to reach out to PLHA belonging to those groups who need treatment and treatment education.
· Less attention to the treatment needs of PLHA in ‘low/medium prevalence states’ since national ARV roll out is mainly implemented in ‘high-prevalence states’.
· Shortage of drugs for opportunistic infections (example: Fluconazole for Cryptococcal meningitis) and lack of drugs for some opportunistic medications (example: Ganciclovir for CMV retinitis) in even the major pubic hospitals even though government of India has a policy to treat all opportunistic infections that occur in PLHA.
· No guideline and access for already who are resisted to first line medications.

The delay in expanding ARV will result in rapid progression of many people living with HIV to AIDS. Serious localized epidemics in several states clearly show that the problem has the potential to reach huge proportions that can impact social and economies significantly in India

ACW: Comprehensive HIV/AIDS care ranges from HIV counseling and testing services through to palliative care for those close to the end of life. Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone's life?

KK: This answer is an obvious one that people would want to access the entire spectrum of care continuum if it is available and is affordable. It is about what each of them need at the point of time in their life. From counseling to peer support to palliative care it should be available on the basis of the needs and each of it has its own significance in adding quality to life of that person.

ACW: One of the main differences between rich and poor regions in relation to HIV/AIDS is a more rapid progression towards AIDS-related illness in developing countries. What do you think might be the reasons for this difference? Can you recommend any measures that may alleviate this more rapid progression?

KK: Again the answer is obvious and studied many a time and relation to poverty and HIV/AIDS has been established.

Most common difference is income inequality, and lack of economic stability. Support from the workplace for people living with HIV, and support for continuous income for families, insurance schemes benefiting people who are not able to work would benefit the community of people living with HIV.

Lack of access to clean drinking water and sanitation, which are cause of many water borne infections causing deterioration of health for people living with HIV, here people living with HIV also are prone to other infections not just the opportunistic infection.

Poor nutrition is the other reason. Food is the crucial requirement as it has been proved that a person who has HIV can remain healthy for many years if he or she has a good standard of nutrition, which is made available for a person adequately and in a continued manner.

Lack of access to health care facilities in areas accessible by the people living mainly in rural areas.

ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis. Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions? Would greater attention significantly add years or quality to PWHAs lives?

KK: Adequate attention has not been given for treating opportunistic infections at the national, even though there is an understanding that treating opportunistic infection will enhance the health of people living with HIV. Though the drugs are supposed to be freely available at the government hospitals people accessing them find it very difficult and common answer they receive would ‘out of stock.’ Not able to access services with in the reach of people is a main reason behind people not able to treat the opportunistic infections. Emphasis should be on maintaining/strengthening basic primary health care services. Training the doctors and nurses in basic HIV management is also part of the overall management of HIV related opportunistic infection.

ACW: Many - if not almost all - HIV-related interventions are concerned with doing things or providing material for people. In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?

KK: Living with HIV every individual has gone through a period of illness and time when they need moral support. Key to understanding positive living is to have belief in ‘living’ and accept life after infection as positive beginning. This acceptance is a difficult process for people. A person going through this particular transition needs to be supported to be self reliant and confident. At this stage making people living with HIV dependent entirely on charity is patronizing, and people stop living and are waiting to die and would stop taking an effort to live.

INP+ believes in making them self reliant and confident, which will help people adhere to the concept of positive living – physical and mental wellbeing. This will enable people take responsibility of their own life, feel wanted, be productive and will be involved in decision making both about their own life as well as take charge of their families. This way there would be more advocates in the community than people who tend to keep quiet because they are afraid they will lose out on their material benefit. Having said that there are people below poverty line, who are sick that they are not able to work, who needs support both moral and material to tide over their difficult times.

ACW: A number of initiatives and policy activities in 2005 - for example the Millennium Development Goals (MDG) review in September, pressure among G8 governments to accelerate debt relief and increase overseas development aid, and the final benchmark of the WHO 3x5 initiative - suggest that this year may be a crucial 'tipping point' that leads to greater attention to development in general and HIV/AIDS in particular. What is your feeling about this? Do you consider 2005 to be a significant year? What are your hopes?

KK: Our goal is that all people living with HIV/AIDS in India has an access to affordable treatment, be able to make informed decisions about their treatment plans and have access to antiretroviral and drugs for opportunistic infections. There have been significant changes in the international and national scenario with treatment in the last couple of year, but a number as larges as 5.3million is daunting and our hopes and feelings take a swing between the very hopeful and hopeless situation. All the international and national level decision can only be fruitful if its actual implementation trickles down to people living with HIV.

(ends)

ACW Interview: Mr Craig McClure

At the recently concluded 3rd IAS conference on HIV pathogenesis and treatment, AIDS-Care-Watch caught up with Mr Craig McClure, executive director of the International AIDS Society, to talk about access to HIV/AIDS care and treatment services around the world.

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ACW: The vast majority of people living with HIV/AIDS do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision globally?

CM: Enormous progress has been achieved in the past two years. Over one million people living in developing countries who need antiretroviral therapy (ART) are now receiving it. Although it appears that the [World Health Organization] target of having 3 million on treatment by the end of 2005 is unlikely to be reached, setting the target has driven over 40 developing countries to prepare detailed plans for implementing ART programmes. Today, health workers are being trained and funding is beginning to flow into countries through Global Fund for AIDS, Tuberculosis and Malaria (GFATM), the US President’s Emergency Fund (PEPFAR), bilateral and in country resources, plus non-governmental organisations (NGOs) are starting to educate local communities to prepare for treatment.

The prices of medication have dropped and the drug procurement and distribution are improving. All this is a monumental task and no one should underestimate the progress that has been made. Still, there are approximately 5 million people in the developing countries who need ART now, but do not have access. The pace of expansion must continue to grow, and even increase, despite the enormous challenges.

The consequences of every delay are the loss of life, destruction of families and great damage to entire communities.

ACW: Comprehensive HIV/AIDS care ranges from HIV counselling and testing services through to palliative care for those close to the end of life. Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone’s life?

CM: Cotrimoxazole and other prophylaxis for opportunistic infections are critical, in addition to antiretroviral treatment. And other basic medications, like anti-diarrhoeals and pain killers are required. And for many, many people with HIV/AIDS living in poverty, food and clean water are needed. I believe that efforts to expand ART access are now incorporating to a large degree the need for these other options, but people also need to remain focused. ARV drugs, taken regularly and safely, are the only tools that can keep people alive and healthy with HIV for the long term.

ACW: One of the main differences between rich and poor regions in relation to HIV/AIDS is a more rapid progression towards AIDS-related illness in developing countries. What do you think might be the reasons for this difference? Can you recommend any measures that may alleviate this more rapid progression?

CM: Poor nutrition, poor basic health care, lack of access to clean water, other co-infections, the many vulnerabilities caused by poverty.

ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as tuberculosis (TB) and meningitis. Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions?

CM: There is an issue of pitfalls of developing vertical stand-alone ART programmes, but most countries, donors and international organizations are working to integrate ART into tuberculosis and antenatal clinics, and other points of contact that people have with the health system. In general though, health systems are weak in developing countries, and the unprecedented momentum to expand ART services for PLWA should provide benefits for health systems overall.

ACW: Many – if not almost all – HIV-related interventions are concerned with doing things or providing material for people. In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?

CM: I am concerned about overly simplistic notions that people can “empower” themselves. People need services and people need to be trained to deliver those services. People living with HIV/AIDS and those most affected need to be partners in the development of those services. Plus, people with HIV/AIDS and those most affected can be a driving fire to make that happen, by advocating with governments, then workplaces and the city leaders.

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For more information about the AIDS-Care-Watch campaign, please visit: www.aidscarewatch.org.

This interview was conducted by an HDN Key Correspondent. To contact the Key Correspondent team, please email: correspondents@hdnet.org

ACW Interview: Mr Mark Heywood

At the 2nd South African AIDS Conference recently held in Durban, South Africa, June 7-10, AIDS-Care-Watch spoke with Mark Heywood, National Treasurer of the Treatment Action Campaign (TAC)and lawyer with the AIDS Law Project in South Africa on access to HIV/AIDS care and treatment and his hopes for 2005 and beyond.

ACW: Can you comment on current progress in scaling up antiretroviral (ARV) provision in your local context?

MH: Well, it’s significant that we’ve got to 45,000 people. If you put together the public with the private sectors that’s over a 100,000 people, which means that South Africa has one of the biggest programmes in the world, possibly the biggest after Brazil. But 100,000 people out of 700,000 who would probably clinically benefit from antiretrovirals (ARVs) is clearly a drop in the ocean.

So the reality is that most people are not getting appropriate medical treatment and therefore we do need to have care strategies for people who are not getting treatment because they live in a province that is tardy, slow and not committed or because it’s difficult to access a site because they don’t have money or for whatever reasons. And our general position is that there still lacks an unambiguous political commitment and that with that political commitment it would be possible to scale up significantly.

ACW: Aside from ARVs, which are other care and treatment options do you think are likely to add years or quality to someone’s life?

MH: I think a starting point is proper counseling at the time of diagnosis. It’s a massively under-resourced area and I hazard to say, anecdotally, but I believe this is true, that most people are diagnosed without appropriate information and that if there was empowering and generally informative counseling then it would be a start point that allows people to understand their medical diagnosis and consequently to take a range of decisions that would better their health or prolong their health generally.

And then after the issue of counseling, there are questions of ongoing psycho and social support, because one post-test counseling is clearly not going to be enough. If there’s access to proper information about HIV which allows people to monitor their own health, and by that I mean what TAC calls “treatment literacy,” frankly the more information the better and the more scientific information the better, and that doesn’t mean in complex scientific language, but it means explaining scientific concepts of resistance, of decline of immunity.

And then there’s access to social security and grants, which is an important issue, and appropriate treatment prior to ARVs; so early diagnosis of tuberculosis (TB), proper management of other opportunistic infections, whether it’s skin disease or candida, all of those things would prolong life. And of course nutrition is important.

ACW: What do you think might be the reasons for this difference [between rich and poor regions] in relation to HIV/AIDS?

MH: Poor people obviously have less access to clean water, food and medical services. If you put all those things together you have a more rapid progression from HIV to AIDS.

ACW: Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions [diseases such as TB and meningitis]?

MH: Today we’re actually launching a paper on TB. Obviously TB is the main cause of death for people with HIV and our TB programmes are in a mess and really what we’ve seen is that the same approach that we’ve tried to develop for HIV needs to be developed to TB, it needs to be popularized, it needs to be taken down to communities, there needs to be advocacy, early diagnosis, there needs to be much more hard information about TB and so on.

Our approach should be the same as for all other HIV-related problems; they are in the best position themselves frequently to determine at what point thrush becomes severe, at what point medicines are necessary and so on. There’s no inherent reason why people can’t recognize skin conditions and know the medicines that are necessary to treat those infections. So if they go into a clinic and they’re fobbed off with something that doesn’t work they know to ask for the right medicine.

ACW: In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?

MH: It really follows on from what I was saying now, which is that particularly in developing countries, there’s not enough doctors and there’s not enough nurses and there isn’t going to be enough doctors and nurses for a hell of a long time unfortunately. It’s far better to empower people and not doing away with the need for proper medical care, but it’s far better to empower people and empower communities about health and about medicine than to do nothing waiting for systemic changes which potentially could be a long time coming.

And then there’s just the obvious things, I mean if you have strategies to mitigate the burden of orphans, strategies to mitigate the various areas where we know HIV impacts then you allow people to remain functional. If people become too burdened by HIV, and not just by the illnesses of HIV but by mismanagement of its social consequences, then they are decapitated if you like, I mean they can’t respond because they’re too besieged by problems.

ACW: Do you consider 2005 to be a significant year? What are your hopes?

MH: 2005 has had the potential to be a significant year but I think what we’re seeing is that on many of the key fronts we’re not getting the progress that may have been latent in the year. I’m not confidant of G8 outcomes for a moment; the Blair Commission for Africa proposals seem to have not disappeared, but they’re not getting the prioritization that they need; WHO’s 3 by 5 is under attack by our own government and by a range of other organizations.

So it’s not a particularly good scenario frankly. It’s not to say we all must despair but as usual there’s sluggishness around the response which is to do with the general paralysis of the world in dealing with a poor people’s problem and a problem that is invisible to the mainstream of world affairs because it knocks out poor people. We know people are dying, that communities are being disrupted, that households are being disrupted, but its marginal people.

This interview was conducted by an HDN Key Correspondent, June 2005.

To contact the HDN Key Correspondent team, please email correspondents@hdnet.org)********For more information about Treatment Action Campaign, go to http://www.tac.org.za/For more information about the AIDS-Care-Watch campaign, go to http://www.aidscarewatch.org/For more information about WHO 3 by 5, go to http://www.who.int/3by5/en/For more information about the G8, go to http://www.g8.gov.uk/servlet/Front?pagename=OpenMarket/Xcelerate/ShowPage&c=Page&cid=1078995902703For more information about the Commission for Africa, go to http://www.commissionforafrica.org/.

ACW Interview: Ms Rachel Sethosa

This is an ACW interview with Ms. Rachel Sethosa, project manager at Takalani Nana Home Care Centre, located in Polokwane, South Africa.

ACW: The vast majority of people living with HIV/AIDS (PLWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?

RS: It is true; the majority of positive people here in South Africa are not on antiretrovirals. In Polokwane there is only one hospital where you can get the drugs. The scaling up process has generally been slow. In my group only two people were on ARV’s and they have both died. They said they waited too long. So who knows if the drugs are really the answer? In fact the truth is that we are very scared to go onto the drugs. The result is that people continue to die.

ACW: Which care and treatment options do you think are likely to add years or quality to someone’s life/ your life?

RS: I have been living with HIV for the past 16 years and I have still very well. Firstly information is the key to success. This helps you to take care of yourself. Most of us don’t have the right information. This is especially so in the rural areas. At least here in the city we are better off.

Counselling is very important. Without ongoing counseling I would not have made it so far. This helps me make informed decisions about my life. It also helps with acceptance of the situation and myself. We actually discriminate against ourselves and practice self stigma! We think that people look down on us, because HIV is associated with sex and we have feelings of shame and we isolate ourselves! It took me a long time to accept myself, but counseling really helped.

Basic things like eating a balanced diet where possible. This is very difficult in the face of poverty.

People must avoid re - infection and also STI’s, so using a condom is important. Again this is very hard for women, because we Africans are too scared to tell our men to do that. We haven’t been taught to speak out and we suffer because of that. That’s how I got HIV! My husband gave it to me. I am glad that he has died, I am sorry to say that but it is true. Actually I knew that he had girl friends in Joburg, but when he came home I didn’t insist on the condom, so I suppose I did it to myself.

Reducing stress is also important. Support groups help with that. Just being able to share your experiences with someone else who is positive helps a lot. That’s one of the things that we do here. We run a lot of support groups throughout the Polokwane and surrounding area.

ACW: What are the reasons for the rapid progression towards AIDS – related illnesses in developing countries?

RS: I think that it is mainly because of a lack of food, poverty, poor living conditions. Hygiene is bad and people are exposed to infections. Poor infra structure. In Africa there are lost of mobile populations, people still have to go and work in the cities. We have lots of people coming across the borders. We don’t have enough resources to share with everybody.

Of course a lack of information about what to do also adds to the problem. Many people don’t have access to co- trimoxazole and often don’t go to the clinics for treatment of opportunistic infections. They are very shy to tell the nurses that they are positive and so don’t get the right treatment. Nurses sometimes think that we are bad because we are positive and they tell others about our status.

As I mentioned earlier, the gap between men and women remains a problem. Women are not allowed to talk about sex here so re - infection remains a problem.

ACW: What measures can you recommend that may alleviate this more rapid progression?

RS: Addressing food security, infrastructure and poverty will definitely help. We as PLWA also need to be brave. We must go for treatment and take it! We have lots of tablets lying in our drawers we don’t always finish the treatment that we get. Empowerment of women is vital? If this doesn’t happen all these other things will be for nothing!

Other measures have been mentioned for example being open about ones status, acceptance by family and friends. Plenty of quality counseling.

ACW: Is adequate or appropriate attention given at National or international level to preventing and treating these conditions?

RS: No.

ACW: Would greater attention add years or quality to PWHA lives?

RS: Definitely.

ACW: In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this will have on their day to day lives?

RS: As I have said through information, self knowledge and acceptance. Support from friends and family. Good nutrition, exercise, no alcohol or tobacco. Work is very important. You need to keep busy. Helping others is very good. It takes your mind off yourself. Accessing home based care. Disclosure is cleansing.

We as adults must be open to out children and be role models. Be ambassadors.

ACW: What is your feeling about the initiatives and policy activities in 2005? Do you consider 2005 to be a significant year? What are your hopes?

RS: I don’t know much about the MDG and G8 pressure, but I do think that 2005 is a significant year in SA. Treatment is becoming more available, it’s slow but it is coming.

I hope that there will soon be a cure! Also that counseling should be strengthened and that Home Based Care would be available to all. I also hope that rural communities would be able to access more information so that they can protect them selves Also that women would be empowered and stigma removed.

ACW: Is there anything else you would like to say?

RS: I would just like to say that to be HIV positive is not the end of the world. You can live with the virus!The important thing is to take care of yourself and the next person and you will live long. I have been positive for 16 years now and I am still going strong!

This interview was conducted by an HDN Key Correspondent, June 2005. To contact the HDN Key Correspondent team, please email correspondents@hdnet.org

Interview with Dr. N.M. Samuel

“We cannot let people die as they wait for ARVs”

Interview with Dr. .N.M Samuel, department of experimental medicine and AIDS research, MGR Medical University, Chennai, India.

He likes to be called `no money` Samuel. Considering his longstanding services to the poor and needy, perhaps this is the best description of Dr N.M. Samuel, from the Department of Experimental Medicine and AIDS Research, in MGR University, Chennai, India.

Dr Samuel, who was recently a guest of honour at the international conference on community care and support for people living with HIV/AIDS in Mumbai, India (7-9 December 2004), is an advocate of scaling up comprehensive care approaches, such as nutritional support, for people living with HIV.

He is also a strong proponent of women being given life-saving antiretroviral (ARV) drugs before men, because families need to be saved, not just individuals. Dr Samuel told AIDS-Care-Watch that India must change its HIV care policy to include additional non- ARV options if more lives are to be saved.

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ACW: Do you think that India should accept the World Health Organisation (WHO) view that numbers treated are not that important, but that health services must be scaled up before making targeted HIV/AIDS interventions?

A: There cannot be a perfect solution. We have to get on with interventions with or without scaling [up of] health services as we are looking at loss of lives. My own experience has shown that we cannot wait. Three years have passed since I had asked for antiretroviral (ARV) drugs for the affected in the village in which I was working. During this waiting period we have lost lives. Our objective is to save lives so we should not wait for the community to be mobilised or high technology equipment before making interventions. ARVs are vital but it is not in our hands. If we can ensure what is in our hands like basic amenities, a good laboratory where basic tests can be conducted, good doctors and counsellors and, most importantly, good nutrition, then lives can be saved.

ACW: Is there a need for India to change its HIV care strategy?

A: One basic change that India needs to incorporate is to change their current policy to first distribute ARV drugs [only] to the ‘high HIV prevalence states’. It is wrong to differentiate. It is against the human rights of all those living in other states where HIV/AIDS may appear to be less and termed by government as low or medium prevalence states. This is leading to migration from these states to states where antiretroviral therapy is available.

ACW: Currently, access to ARVs is limited, how can it be more equitably distributed?

A:First, the government must not overlook low prevalence states. It wouldn’t want these low prevalence states to become high prevalence states because of sheer negligence. In the absence of ARVs, prevention, care, treatment and awareness programmes must be prioritised. In fact, they can chalk out such a programme for a group of 5,000 persons in these states. Once it becomes sustainable, this can be used as a model for high prevalence states.

ACW: Do you support the underlying objective to prioritise non-ARV care options to protect people’s right to life and health?

A: Certainly, I support it. We cannot let people die as they wait for ARVs. We need to look at alternatives because ARV drugs will not reach everyone. Non-ARV care and support has to be scaled up. I believe that prevention efforts can be improved by increasing care services. Food is another important intervention. It is like medicine. Even giving them the information about the kind of food that can improve their health goes a long way. For example, drumsticks, the vegetable that is eaten by nearly all Indians, is not only readily available and cheap, but more importantly, it is nutritious. In addition, traditional and community-oriented interventions like grain and rice banks should be boosted.Personally, I don’t believe in alternative medicines, as they have not scientifically proven to have any influence on HIV/AIDS. However, I do believe that practices like Reiki, pranik healing and faith-based healing do play a role in improving the quality of life.

ACW: The number of affected and infected Indian women appears to be rising alarmingly. How can the gender aspect of the HIV epidemic be addressed more effectively considering women often cannot negotiate safe sex?

A: There has to be a change in policy. Our HIV/AIDS programmes have to be focussed on women. Women and children must be given ARVs first because families have to be saved not just individuals. Just like the government is prioritising high prevalence states, women and adolescent girls must also be given equal priority as they fall in the same high risk category. Women have to be empowered so they can access prevention and treatment services. A study that we did in Nammakal village in the south Indian state of Karnataka, showed that women knew that they were at risk since most of the men were truck drivers. They wanted some means of protection but could not ask their men to use condoms. In addition, there were also discordant couples where the wife was positive and his husband negative. So, empowerment cannot be the only way. There must be a lady doctor at the health clinics so those women can talk about their problems and seek treatment and care. All strategies must have a human face. Only then can we give our people the dignity they deserve.

AIDS-Care-Watch
info@aidscarewatch.org

This interview was conducted by ACW at the international conference on community care and support for people living with HIV/AIDS in Mumbai, India, December 2004.

ACW Interview: Oliver Kanene, CEO of Centre for Community Enterprise, Zambia

ACW Interview with Oliver Kanene, Chief Executive Officer, Centre for Community Enterprise, Lusaka, Zambia.

ACW: The vast majority of people living with HIV/AIDS (PLWHA) do not have access to antiretroviral (ARV) drugs.

Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?

OK: In Zambia ARV provision is increasing. However, access is still restricted by expensive pre-medication tests and not all government institutions are providing ARVs free of charge. In some government hospitals people still have to pay.

There is no doubt that universal access in the context of Zambia is a pipe dream because government does not have the resources particularly trained personnel to manage treatments.

ACW: Comprehensive HIV/AIDS care ranges from HIV counselling and testing services through to palliative care for those close to the end of life.

Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone’s life?

OK: The most important care and treatment option for Zambian persons living with HIV/AIDS is the provision of food supplements especially in the absence of access to ARVs

ACW: One of the main differences between rich and poor regions in relation to HIV/AIDS is a more rapid progression towards AIDS-related illness in developing countries.

What do you think might be the reasons for this difference? Can you recommend any measures that may alleviate this more rapid progression?

OK: The rapid progression towards AIDS in poor setting is due to lack of access to opportunistic infection treatment, poor nutrition and in some cases stigma.

ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis.

Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions? Would greater attention significantly add years or quality to PWHAs lives?

OK: In Zambia government is making every effort to attend to these illnesses especially TB. Resources for this like for HIV/AIDS treatments are dependent on donor support making them extremely precarious. Yes people would live longer and better if these [other illnesses] are avoided.

ACW: Many – if not almost all – HIV-related interventions are concerned with doing things or providing material for people.

In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?

OK: Increase treatment literacy.

ACW: A number of initiatives and policy activities in 2005 – for examplethe Millennium Development Goals (MDG) review in September, pressure among G8 governments to accelerate debt relief and increase overseas development aid, and the final benchmark of the WHO 3x5 initiative –suggest that this year may be a crucial ‘tipping point’ that leads to greater attention to development in general and HIV/AIDS in particular.

What is your feeling about this? Do you consider 2005 to be a significant year? What are your hopes?

OK: While I do have hopes for the year, commitments made by developed countries to support development programs in Zambia must be fulfilled. My hope is that suopport will be given to training para-medical staff to increase expertise in the management of HIV/AIDS treatments which will increase the number of people on ARVs and reduce deaths.

(ends)

The AIDS-Care-Watch Campaign is a global initiative with the goal of reducing the number of HIV-related deaths in 2005. The campaign has over 240 non-governmental and civil society partners throughout the world. For more information about the campaign and its partners, please go to www.aidscarewatch.org or email info@aidscarewatch.org

ACW Interview: Dr Charles Gilks

At the recently concluded 14th International Conference on AIDS and STIs in Africa (ICASA) in Abuja, Nigeria, ACW caught up with Dr Charles Gilks, Professor of International Health at Imperial College London and Director Co-ordinator of the Treatment and Prevention Scale-up team in the HIV Department of the World Health Organization (WHO) Headquarters in Geneva.
Dr. Gilks has been working in the HIV/AIDS field since 1988, largely in Africa, and has seen first hand how the epidemic has grown out of control, with the suffering and untimely death of hundreds of his patients, and the distortions imposed on already weak health care systems. Based in Kenya for five years, his team was the first to highlight the importance of bacterial infections in HIV/AIDS patients in Africa, and more recently, the interaction of HIV with malaria.

After becoming a Professor at the Liverpool School of Tropical Medicine, his team evaluated several interventions to try to preserve the health of people falling sick with HIV. Some worked but most did not. The inescapable conclusion was that only anti-retroviral therapy will prolong life and restore quality of life, a fact well recognised in the US and Europe.

He is one of the Principal Investigators for the DART trial, a multicentre, multicountry trial of treatment strategies in Uganda and Zimbabwe, the largest antiretroviral treatment trial in Africa.

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ACW: Can you tell us a little about your recent work?

CG: I have been working in WHO for several years and have been intimately involved with the ‘3by5’ initiative from its first description. I led a lot of the initial work and the development of the strategy and its launch and then its subsequent delivery and I would like to believe in the success of ‘3by5’ – of putting treatment permanently on the agenda, and actually moving from the treatment being regarded as something that was not affordable and obtainable in most resource-poor countries – which is where we were December 1st 2003, and when we launched ‘3by5’.

We had the treatment target. We also had the treatment goal which was universal access.

Many people thought in 2003 it was lunacy, that it was suicidal for an international agency to commit to, and that we would never get there. We have gone from lunacy to global policy in two years and I think that is probably one of the most stunning public health achievements, and we need to have some recognition of that.

We have had slippage on the target numbers. The target was there to really push countries to take responsibility for treating their own citizens. Many have done. We always knew it was going to be difficult to roll it out. But the commitment is there, the momentum is there, communities are engaged and beginning to be much more open about demanding this. And I think it has worked. History will say we did the right thing.

ACW: The vast majority of people with HIV/AIDS (PWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up antiretroviral (ARV) provision in your context? What are the consequences of the delay in expanding ARV access?

CG: In our position at WHO we have seen major advances in some countries and slower progress in others, slower than we would have anticipated or wanted. The reality is that in many countries people don’t just lack access to ARVs they actually lack access to any sort of quality health services.

The real challenge is to deliver ARVs – not just to start people on treatment but to deliver quality care which is necessary to get the treatment benefit of ARVs. We actually have to build a functioning health service, and that includes supply chain management and procurement; it includes training staff and supervision, ensuring they have better conditions of work.

We focussed on a numerical target but we have always recognised that beyond the target there are some extremely challenging health systems issues. We deliberately did not emphasise those at the beginning because we did not want didn’t want any distraction from the need to start treatment initiatives.

ACW: Comprehensive HIV/AIDS care ranges from HIV counselling and testing services through to palliative care for those close to the end of life. Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone's life?

CG: We have recently completely revised the global guidelines in light of some new evidence. One of the problems with a simple slogan like ‘3by5’ is that it has not captured the fact that the care continuum starts with the identification of infection, and then leads through routinely following up the child or the adult with infection, to see how they are progressing, and to identify the relevant points to start OI [opportunistic infection] prophylaxis, and then to start treatment, before people get very sick.

We are playing catch up in many places because there are so many people who are already sick, but we have got to look forward to develop the proper programmes. Cotrimoxizole and Isoniazid will prolong survival if they are used appropriately.

The other issue that we haven’t paid enough attention to is the nutrition issue. From a household point of view, if you have nutritional stress, that is often more important, actually, than even cotrimoxizole or ARVs, and we believe that you can’t give treatment to somebody who is starving, so we have got to do more work on nutrition.

Finally, of course, you come to the treatment interventions. Our public health approach has been to try and simplify and standardise these interventions so that they can be rolled out outside of specialist centres. I think it has been one of the key developments that WHO has been involved in, and it is now universally accepted that we have first-line treatment, and then when you fail first-line treatment, as we expect the majority of people eventually will, you move on to the more expensive second-line treatment with protease inhibitors.

We’re promoting the need to think about salvage options, after that, recognising that this is going to be difficult and expensive, and that actually with the first-line and second-line options exhausted, some salvage therapy is going to be difficult to construct, and therefore recognising that as with some chronic disease therapies and life threatening infections, palliative care and end-of-life care is going to be important.

ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis. Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions? Would greater attention significantly add years or quality to PWHAs lives?

CG: That is a very interesting question. I think our strategies around some of the common opportunistic infections is that it is better to prevent than to have to treat, and I think the TB work with the isoniazid preventive therapy illustrates that, and also obviously the cotrimoxizole prophylaxis interventions.

We’ve stressed the need to start that particularly in children where sadly, globally, there is very, very limited use of cotrimoxizole prophylaxis, and I think actually there are tens of thousands of very easily preventable paediatric HIV deaths.

The issue with preventing tuberculosis is more complex because of the need to exclude early active disease, and then ending up making the situation worse for the individual by just giving isoniazid alone. The standard treatment for an active tuberculosis case is triple drug or sometimes quadruple drug therapy.

If you give just one drug alone you will very quickly get resistance to that. So isoniazid prophylaxis is much more complicated to implement than cotrimoxizole. As a result we are still going to have to deal with the immense challenge of identifying TB, because it presents differently in people with underlying HIV infection.

On the positive side, it means that we are beginning to understand how TB control programmes are very important entry points for, first of all, the identification of HIV infection, and then, with or after the anti-tuberculosis treatment, the starting of anti-retroviral therapy.

Another really important opportunistic infection that is emerging as an important killer after tuberculosis, is cryptococcal meningitis. This is potentially preventable. There are trials of prevention using Fluconizol in people who are also starting on antiretroviral therapy with low CD4 counts. We await those trials with interest because if Fluconizol works, and possibly also minimises the serious but not life-threatening candida infections, that might also be an important development.

ACW: I just want to take you back to the quality or extention of life. How does this pan out in terms of quality of life for the person living with HIV or AIDS or addition of life years?

CG: Antiretroviral therapy appears to be as effective in programmes in Africa as it is in the US, and I think we can confidently look forward to 4 to 5 years of additional quality of life where you become clinical symptom free. Obviously this isn’t a cure but it takes away the weight loss and the fatigue and the minor and major opportunistic infections.

For some, at the moment, we will have started too late, because we are playing catch-up in many countries, and very sick people are presenting for care with CD4 counts in the 10s or 20s and with really very high viral loads. For them, clearly, the prognosis is sadly much less with antiretroviral therapy because it has been started too late.

I think some issues of quality of life are going to be some of the drug side effects. We know that antiretrovirals are not perfect drugs. We know each of them has a measurable toxicity. One of our major issues in the next year is to start to collect the toxicity information.

ACW: Many – if not almost all – HIV-related interventions are concerned with doing things or providing material for people. In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?

CG: When the communities are mobilised around health as a right rather than something that they are scared to ask for, I think that is an important step. Where this has happened in Europe and in North America, I think it has actually transformed the doctor-patient relationship, making it less authoritarian in its approach, much more a relationship of information-sharing. I hope that transformation will happen in resource poor countries as well, as it has happened to great positive effect in the North.

ACW: In addition to a positive frame of mind for the individual, are there other things you would suggest that an individual can do, in order to maintain and, in fact, potentially improve their health in the context of HIV infection?

CG: They obviously have to have an understanding of their own disease, and they need to adhere very carefully to their medication. I think that is one of our big challenges, that, for many people, regardless of where they live, long-term adherence to medicine is difficult. I think the most important action somebody can take, is to take control of their own treatment.

It is their illness; their responsibility, to take their medicine regularly and stay in control of their own disease. I think we are in the infancy of learning how to promote adherence in a positive way. I think we have some learning to do from other chronic diseases like blood pressure management or diabetes, where people have to take, their medications for life. So we need to start that sort of dialogue with those managing other chronic diseases where there is a wealth of experience.

ACW: Four years ago, the United Nations (UN) General Assembly held an unprecedented special session on HIV/AIDS – the first time the assembly had ever addressed a specific health issue. The resulting Declaration of Commitment on HIV/AIDS (UNGASS), signed by all member states of the UN made explicit pledges to "provide the highest attainable standard of treatment for HIV/AIDS, including the prevention and treatment of opportunistic infections and effective Anti-retroviral therapy" and "make significant progress in implementing comprehensive HIV/AIDS care strategies by 2005." Can you comment on the progress WHO has made towards fulfilling the 2001 commitments to improving comprehensive care and treatment?

CG: I think what is interesting with the UNGASS 2001 declaration is that, whilst treatment was mentioned, there was never a treatment target, because in reality in 2001, we weren’t looking towards treatment targets, or even universal access to treatment, as a right and as a goal.

Since then we’ve established targets such as ‘3by5’, so I think we have made, at the global level, huge progress beyond what was anticipated. I think, also, that that has helped increase the flow of resources that have gone to the Global Fund, the President’s Emergency Fund and the World Bank, the three major resources for global health, particularly with HIV. So, I think we have made a major difference. Obviously many other groups, partners, individuals, activist groups, have been involved, but I think our role has been fairly key.

What we haven’t done as well, is been clear, right from the start, to say that the treatment issue that we focussed on was plugging a gap, but there were existing prevention interventions that also needed to be strengthened and reinforced. Whilst we’ve put a lot of our energy into filling the gap, we should have spent more energy on reinforcing prevention, because ultimately in the long term, if we don’t prevent infection, if we just treat it alone, this won’t be sustainable.

ACW: A number of initiatives and policy activities in 2005 – for example the Millennium Development Goals (MDG) review in September, pressure among G8 governments to accelerate debt relief and increase overseas development aid, and the final benchmark of the WHO ‘3by5’ initiative – suggest that this year may be a crucial 'tipping point' that leads to greater attention to development in general and HIV/AIDS in particular. What is your feeling about this? Do you consider 2005 to be a significant year?

CG: I think it is a significant year because it is the end of ‘3by5’ because the 5 was 2005. It is an important point to review progress. We believe up to now, that much if not all of the additional financing that has come into the HIV arena is new money.

Previously, there have always been concerns when a new initiative has come forward in health or agriculture that it isn’t really new money, it’s just money from the pot for that sector that is reallocated visibly to the particular priority or programme or initiative. But we believe there is substantial new money that has come into health and development. In terms of how that is maintained – we are at a critical point.

We started a lot of people on treatment, we need to start a lot more. If the money runs out, or the pledges aren’t fulfilled, we will have very difficult choices to make. I think the next year is going to be critical.

ACW: 2006, the next year…

CG: Yes, because it is going to become very apparent then, as we look at the increasing numbers on treatment, and we have more clarity on the cost and the pledges that have been made, what the long term mismatches emerging are. It will be critical, to say not just “this is happening”, but “what are we going to do about it?”

Countries need to have long term commitment, and I mean long term, I am not talking about even 5 years here, I am talking about 10 and 15 years. If they are going to plan for a chronic disease programme, they have to have some certainty that there will be the international support. If they don’t get that they will never reprioritise and increase the health budget themselves.

I don’t think we’ve got the necessary full commitment to treatment and scaled up prevention intervention. We haven’t properly included and costed the prevention component. And it will be even more costly than treatment. And we have to recognise that the prevention component is critical. This is universal access to prevention, care and treatment. We have to see it as a unified new approach.

ACW: What do we call the next chapter beyond ‘3by5’?

CG: We were lucky with ‘3by5’ that our target turned into our slogan and we got a brand out of it. It was unintentional. We need a catchy slogan. “Universal Access to Prevention, Care and Treatment and Support for HIV” isn’t particularly catchy, but we do need a brand or a slogan because it helps in our global advocacy work.

ACW: What do you see as the best case scenario for the next chapter?

CG: In the next ten years that we have truly universal access and that we can demonstrate huge prevention gains. We cannot sustain a treatment-only approach.

ACW: Perhaps not the best question to consider, but, what’s the opposite. What do you think is the worst case scenario from here?

CG: The doomsday scenario is falling resources; impossible decisions to be made; and a global disenchantment around this area such that communities are completely discouraged, and that the optimism and the energy is lost; that the epidemic continues, then, to go out of control, and that this unique opportunity with the global commitment is lost.

We have an opportunity now, and if we screw up, that’s it. This is a critical time. The doomsday scenario is the funding is reduced, the political commitment goes away, and the epidemic just continues. I don’t think it will happen because I think there is enough recognition at all levels of what a threat HIV is.

I am not personally a doomsday scenario person, but I think it is an important question to pose because the threat of failure now, would be catastrophic, and I do not see if we failed now, how we would ever be able to get back into the same position of being able to confront this epidemic head on and actually have some confidence that we could reverse it. It was very difficult for communities to take on board a prevention-only message. They didn’t want to hear. Now we can do treatment and prevention together. It’s a positive message. It’s a reinforcing message, and I think we can turn the corner… We can’t even think about failure.

(ends)

Thank you to HDN Key Correspondent Team for conducting this interview on behalf of the ACW campaign.