It is hard to define: if is reality that suggests stories and characters, or if stories could be used to understand realities. As it often happens, the relation is complex to be analized. In some way we could assume a similar approach that underlines the difference between post hoc and propter hoc. And the kingdom of truth –if it is- is complex to be explored. As writes Gilbert K Chesterton in The club of Queer Trades “Truth must necessarily be stranger than fiction, for fiction is the creation of the human mind and therefore congenial to it.” Let’s try to use stories as well as history to approach this end of the year: for two different reason. The first is fictional: we want to remember that in 1993 the film Philadelphia was released. Now, 20 years after, -already 20!- we can guess that a relevant part of the landscape is changed: research, science and interventions were able to set up efficient answers to the question posed by HIV. Indubitably, the answers that have been issued are manly form the science. Unfortunately policies, attitudes, behaviors, beliefs and prejudice stand still against a world fully committed against HIV/AIDS. Some examples? Omophobia, legislation about recreational drugs, women conditions and genders disparities. Stories are important because they are narratives of the emotion and the flavor of the needed engagement in fighting against AIDS. Looking to Philadelphia, we measure and recognize how far we are from the dark and early days of the epidemic. But it is not enough.
Despite the progress we made, the obstacle we are now facing are more hard to overcame, because they are rooted in society and in economy. This is the reason way, together to the analysis of stories that are at the same time shape and construction of health and collective dimension of disease, we need to look at the history of these years in order to make clear that there are persisting as well as emerging challenges that must be addressed. The best way to do this is through the experience of privileged witness of how HIV/AIDS was able to illustrate the “new global vulnerability” we are still living in. The quote is from a key person in the history of HIV/AIDS, Jonathan Mann the scientist and advocate for civil rights who died on Wednesday, September 2, 1998 in the crash of an airplane bound from New York to Geneva, where he was to attend a World Health Organization conference. He was 51. In a visionary preface to “The Coming Plague. Newly Emerging Diseases in a World out of Balance” written by the Pulitzer prize winning Laurie Garrett, Mann writes “We always want to believe that history happened only to “ them”, “in the past”, and that somehow we are outside history, rather than enmeshed within it. Many aspects of history are unanticipated and unforeseen, predictable only in retrospect: the fall of the Berlin Wall is single recent example. Yet in one vital area, the emergence and spread of a new infectious disease, we can already predict the future – and it is threatening and dangerous to us all” (1).
The feeling of momentum and of history inspired any action of Mann, who was the first man to manage the first project on AIDS, in Zaire. It was in January 1984. In the best seller book by Laurie Garret we can have the encyclopedic impressive history of these days. In march 1984 Peter Piot joined Mann in Kinshasa. The personal perspective and the witnessed history of AIDS – through a life in pursuit of deadly viruses- is narrated by Peter Piot in his intense book “No Time to Lose”.
In this issue of our journal we have the privilege to publish a long interview to Peter Piot, that is the director of legendary London School of Hygiene and Tropical Medicine, former undersecretary general of the United Nations and former executive director of UNAIDS. As usual, at the end of the year new geographical atlas are published to fix where we are and how the World goes. This is the reason why we use the book of Piot as a cartography of contemporary AIDS.
Happy new year

Articolo presente in – HAART and correlated pathologies n. 17 –

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It could be an unusual mix to put together the greatest Athenian historian, a 30 years old pandemic and hepatitis (mainly HCV infection). But if you have 5 minutes of your time to waste, follow my joke. Because a conceptual link could be found.
I would start with Thucydides. He writes at the beginning of History of the Peloponnesian War: “Thucydides, an Athenian, wrote the history of the war between the Peloponnesians and the Athenians, beginning at the moment that it broke out, and believing that it would be a great war and more worthy of relation than any that had preceded it. This belief was not without its grounds. The preparations of both the combatants were in the last state of perfection; and he could see the rest of the Hellenic race taking sides in the quarrel; those who delayed doing so at once having it in contemplation. Indeed this was the greatest movement yet known in history, not only of the Hellenes, but of a large part of the barbarian world- I had almost said of mankind”.
I want to make clear that I have chosen these lines not because of the war metaphor, but because of the issue of time (and also because it is a such impressive start). In this case the key factor relates to the issue of “time” –the innovation made by Tucydides- is how to deal with the distance between an event and its historical description.
How long do we have to wait, before we can start to describe, understand and interpretate historical events?
Tucydides is the first who gives us an answer. He says that he is “an Athenian” and that he has started to describe, to write, to tell us “the history of the war (…) beginning at the moment that it broke out, and believing that it would be a great war and more worthy of relation than any that had preceded it. This belief was not without its grounds”. Tucydides starts contemporary history, writing as a conscious part of the events he describes -he declares to be “an Athenian”- underlying that he is convinced that the events he was seeing would be “great (…) more worthy of relation than any had preceded them”.
This is what I thought when I received form Amazon my copy of “AIDS at 30. A history”, written by Victoria A. Harden. On the backside cover it is written “current events/ medicine/ medical history”. How is it possible to write the history of an event or a social phenomenon that is still going on? It is quite easy to tell when a story starts but how do we know where and where it stops?
For twenty years Victoria A. Harden was funding director of the Office of NIH History at the National Institutes of Health. In her wonderful book she approaches the virus from a multidiscipline perspective in the history of medical science. It enables her to discuss the process of scientific discovery, scientific evidence and how laboratories identified HIV as the cause of AIDS and developed therapeutic intervention. In addition to that, her study defines AIDS as the first infectious disease to be recognized simultaneously worldwide as a single phenomenon (let’s say so impressive as Peloponnesian War seemed to be for Tucydides).
When the epidemic started society was not prepared for the appearance of a new infectious disease. “After years of believing that vaccines and antibiotics would keep deadly epidemics away, researchers, doctors, patients and the public were forced to abandon the arrogant assumption that they had conquered infectious diseases”. AIDS at 30 illustrates “how medicine identifies and evaluates new infectious disease quickly and what political and cultural factors affect the medical community response”.
How do we define an epilogue for AIDS? We can only say where we are now and where we will be –possibly- in the future. When we see the statistics of death caused by HIV, the rates drop drastically after the introduction of HAART. It happened in 1996 in the northen hemisphere and now we can see a similar trend in the rest of the world. Due to the increase of funding of international donors for diagnosis, treatments and prevention efforts. “Sub-Saharian Africa’s graph shows a similar pattern, with one exception: the number of deaths in the region are measured in millions instead of thousands that characterize the rest of the world”. HIV is a recent discovery: “looking back over the three decades of the HIV/AIDS epidemic, medical science can be pride in how quickly the syndrome was identified, the causative agent found , a diagnostic test prepared and an effective therapy developed”, writes Harden, commenting on Paul Volberding’s quote: “there is probably not anything the equivalent in medicine, apart from may be the development of penicillin, in terms of night and day difference”.
HIV/AIDS is not a classic epidemic like the 1918-19 influenza or a cholera outbreak: “untreated HIV killed 100 per cent of people who developed full blown epidemic AIDS” and “perhaps the most novel development during the first three decades of the epidemic was the consensus during the third decade that HIV/AIDS required a global response because it was a global threat”. This consensus has made it possible to define a new medical discipline called implementation science: “the scientific study of methods to promote the integration of research findings and evidence based intervention into health care policy and practice and hence to improve the quality and effectiveness of health services and care”, according to Peter Piot’s definition.
In my opinion this is the best value of this book, written simultaneously when the events and the consequences are happening contemporarily in front of us, it is like a journey in a new land and the author-traveler is mapping the land where we are. I think that Victoria A. Harden rooted its cultural and historical analysis of HIV/AIDS in the same way that Paul Theroux –the acclaimed author of travel books- did. He explains that “in a sense, the world was once blank. And reason cartography made it visible and glowing with detail was because man believed, and rightly, that maps are a legacy that allows other men and future generations to communicate and trade”.
Speaking about contemporary history, we can say that only time will provide the necessary perspective. Harden suggests that HIV/AIDS epidemic “will be viewed as all others epidemics, as a biological event occurring in a historical time within human social, political, religious and cultural institution”.
In this light, inside our issue of HAART, we decided to cover the Washington International AIDS Conference publishing the opening speech made by Jim Yong Kim, World Bank Group President, about AIDS and poverty, followed by the closing remark made by Francoise Barre-Sinoussi, Nobel laureate and President of International AIDS Society, drawing a possible future scenario from her point of view, being a scientist, a woman and an advocate. In her book Harden claims that “one of the unique characteristic of the HIV/AIDS epidemic has been the vigorous and continuous involvement of people with HIV/AIDS and their supporters, together known colloquially as “AIDS activists”.
It is a curious coincidence that in the same box from Amazon came, with “AIDS at 30”, another book: “ Patients as Policy Actors” edited by Beatrix Hoffman; Nancy Tomes, Rachel Grob and Mark Schlesinger. The structure of this strong volume reflects the authors’ determination “to broaden conceptions of patients action and to appreciate the complexity of its influence”.
The book is articulated in 3 sections, each focused on a different type of patient action and voice in health care system. Part 1, titled “Voices of the Silent” examines patients who have been silent or silenced and reflects on the implication of their silence, including the efforts of others to speak for them. Part 2, titled “From Individual to Collective”, looks at patients who speak more directly on their own behalf, both as individuals and as groups (could individuals and collective identities shape patient’s roles as policy actors? Can patients voices constitute a collective action? In which way?). Part 3, “How Patient Matter”, explores situations in which patient influence, both intended and unexpected, succeeded in changing policy. This section is closed by Steven Epstein, providing “a wide-ranging examination of what it means to say that a social movement has achieved success”.
According with the editors, “the desire to understand the role that patients do, can and should have in health care policy making is the driving force behind this book”. Two considerations support this book: first, putting together researcher from different disciplines –those who are studying in patients empowerment and those who are analyzing health care system- the book constitutes an excellent opportunity to pool the different authors/ disciplines insights “into the complex ways that patients interact with health care institutions and influence policy outcomes”. Secondly, it represents the more complete state-of -the-art volume on “wide variety of patients actions and policy arenas”, preferring to use a broader definition of an action in order to represent more accurately “the impact and the potential of the patient-consumer voice in the health care system”. The proposed analysis starts from the fact that “two paradigms – patient-centered medicine and consumer-driven health care- have emerged as road maps to define how patients should exercise greater control over their care” wrote Nancy Thomas and Beatrix Hoffman. “Patient-centered medicine attempts to enhance patients’ involvement in clinical decision making, while consumer-driven health care focuses on economic choice”.
In different ways, but “both paradigms assume that consumers empowered to act on their needs and preferences will change the health care system for better”. Where is the contradiction? Although both approaches have drawn new attention to the role that empowered patient can play in restructuring a dysfunctional heath care system, they tend to put the cart before the horse: they assume that a patient can have a corrective influence on health care trends in the absence of concrete evidence that such a capacity exist”. There are not many in detth analysis that investigate if and how patients and consumers could play a role in transforming doctor-patient relationship, medical institutions, access to care, heath care policy. “Although patient initiative have secured the expansion of some kind of choice and safeguards, especially for the educated and affluent, they have been offset by growing demands for costs containment and marked discipline that have limited both physicians’ and patients’ autonomy”.
In the book there many pages devoted to Hepatitis, but what is happening in our world in these days –let say in the contemporary- with the revolution of Direct Antiviral Agents (DAAs) for HCV infection, create the perfect scenario to read the “Patients as Policy Actors”. Access to drugs, prescription criteria, reimbursement, costcontainment and budget constraint are the key words through which Scientific Societies, health care providers, patients associations and decision makers must define the best inclusive public policy to respond to health needs.
This is the reason why we publish in this book the expert opinion on DAAs by AISF –the most authoritative Italian scientific society on liver disease- and a comment from a member of this society, prof. Calogero Cammà.
This is just the beginning of a debate on DAAs. In the next HAART issue we will host other comments from MDs as well as from patient associations. We will welcome any further comments… I wish you a pleasent reading.

Articolo presente in – HAART and correlated pathologies n. 16 –

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Let’s say that this issue of HAART is on drugs and how to use drugs at the best. It is for HIV infection as well as for HCV.
We know that every virus tells its story, but some similarities could be found, especially if you think about the process of drug discovery and the knowledge spread about it use. The impact of having efficient drugs in HIV and HCV is similar: we have to face epidemics on a global scale, to prevent the contagious, to reduce the burden to the disease and to cure the infection. Ideally, we would end the epidemic.
All of this needs drugs and we do have antivirals: we call HAART the combination of them to treat HIV infection; we call DAA the new compounds that address directly HCV the process of replication. It is a impressive condition that was unthinkable only some years ago, making improvements day by day. Drug are thought as the main surrogate of health, “the” solution to restore a condition that is not balanced, the answer you can swallow in order to face a threat.
A substance becomes a drug when there is a person who intake it for some expected effect that the above mentioned substance should have –either if it’s supposed to have, either it has demonstrated to have. A substance without a person cannot be a drug. It remains a powerful substance, but not a drug. Drugs –pharmaceuticals- are at the heart of the story of HIV infection. Drugs, the quest for an antiretroviral was the first question that was made by people that were in need. Because to our culture drug –a pill- could be the answer: it reflects a specific cultural approach to formulate and to think a problem a in a specific way that includes -at some extent- in itself the answer. If we understands how it works, then we can built the solution. HIV was the first big challenge to this. I’m referring, for instance, to the too much optimistic statement made during a memorable press conference in April 1984 by Margaret Heckler, US Health and Human Services Secretary, after -may be- having had a conversation with the virus’s co-discoverer Robert Gallo: “We hope to have a vaccine ready for testing in about two years”. Now, 30 year after, we don’t have any licensed vaccine (we have only some people claiming that have got it). But we have drugs and HAART, and it impact on prevention.
As said last year during the IAS conference in Rome the director of the US National Institute of Allergy and Infectious Diseases (NIAID) Anthony Fauci “I’ve never seen something explode like this”, commenting the results of HPTN052: earlier ARV treatment of HIV-infected individuals leads to a dramatic 96% decrease in HIV transmission. And the results of Partners PrEP and TDF2 showed that pre-exposure prophylaxis (PrEP)— ARVs to HIV-uninfected individuals— resulted in a 62%-73% reduction in HIV transmission among heterosexual men and women. Also without a vaccine we could stop the epidemic, may be, but Adherence appears to be a critical factor for PrEP protection against HIV.
How we were able to be here? We cannot forget the tremendous role played by activist on making pressure on R&D department in Pharma as well as in public health sectors. At the very beginning of the epidemic we have seen a contradictory behavior: those who were afraid by toxicity and by the medicalisation –including anxieties for the growingup role of pharmaceutical companies-, saying that there is any link between medical sciences and society, and those who were claiming -writing it on their panels- “make tomorrow happen today” and “drugs into our body”, a sort of utopist republic of anti HIV drugs.
Pharmaceutical drugs represent a unique opportunity to study the relationship between symbol and political economy considering drugs as commodities with their distinctive biographies – considering in this case biography as metaphor: “people give these substance a history. As powerful technical devices and status symbols, medicine acquire a status and force in society” (2). “Following the transaction of these object reveals biographical order –and a gendered technical order- to their social life. Pharmaceuticals may profoundly transform social relations, thus rendering useful a consideration of politics –understood as various struggles shaped by power and its operations” (3).
HIV field with its antiretroviral access programs – especially in middle income countries- considering aspects like adherence to treatments and perspective for the future, point to innovative forms of socio-political identification and participation focused on the concept of the therapeutic or biological citizenship (including the right to health care) (4).
We know that every virus tell us a different story, but the history of HIV and the history of drugs development could be useful for those who are working in Hepatitis field –both for physicians and activists. As explanation of the reason why we have a huge number of compound that are now in the HCV pipe line, Markus Peck-Radosavljevic, associate professor of medicine at the Department of Gastroenterology and Hepatology at the Medizinische Universität Wien, told us that “hepatitis C research is really tremendously benefitting from HIV research because a lot of what is known about viral kinetics and so on was learned from the HIV community. The second and really major breakthrough for hepatitis C research was the so-called “replicon system” at the turn of the century, developed in 1999 actually, before that it was not able to grow the virus in culture, so it was not able to test targeted agents in a culture system which made drug development incredibly difficult because you could only grow the virus in chimpanzees outside the human beings and that was very difficult. Now, with the replicon system, out of a sudden you could test drugs in a petri dish and that’s what started the revolution”. (see his interview at pag XX).
We have getting solution for HCV infection, in a short period also without interferon. And In HIV field we are in the privileged position to define new strategy, because we have so many efficient ARVs. “I think we need to start thinking about novel ways of treating patients. I think what is going on is that we have all become rather routine prescribers just writing out our favorite prescription for the majority of patients- says in a very passionate way Mark Nelson, Director for the HIV Directorate and Deputy Director of Research, Chelsea and Westminster Hospital:- so we need to think about the necessity to individualize per patient: we need to consider the pros and cons for the individual patient”. (see his interview at pag XX).
Now a fully trust on drugs now arise also from some of those who were critics against the “republic of Pharma”. And at the same time we can listen that people who were in favour of early use of drugs are now claiming against PrEP. It is all too new in order to solve the puzzle, in which stands the FDA decision to approve the first drug to prevent HIV infection.
We need to the bate all these issues related to the non conventional use of ARV.
Somebody suggested that we are living may be in a sort of antiviral Renaissance. I think it could be a nice definition of the very recent period, until now. With the PrEP revolution we are entering a in new phase, may be: let’s call the Baroque. If Renaissance means in art and philosophy the use of the geometrical perspective and the human being as measure of everything, fully trust in human mind and its ability, Baroque –that comes against Reform as the need to reaffirm the supremacy of Catholic Church as prescriptive core behavior and values- means emphasis for “decoration” and expression of the power. Today it’s seem that the (wonderful) power of the drugs is founding a new one-way rationality of behavior, that must be based on adherence. Let’s ask in a provocative way: is it the beginning of the era in which pharmacopeia will represent the only accepted manners and etiquette? We are open to publish all the answers you have.

Articolo presente in – HAART and correlated pathologies n. 15 –

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Metaphors and reasons of engagement

For 30 years of HIV epidemic, to be all the time at the forefront is a hard task to manage: all the time you need to be ready to react or -harder to do- to anticipate the enemy’s strategy. Some people could be hungry with the word “enemy”, because it is claimed that a war metaphor is negative and misleading when it is applied to health. Who is reacting about this very often is referring to Susan Sontag Aids and its metaphor: a classical book in which the writes tries to sat that metaphors are a negative burden that makes more diffi cult to live with a illness. Modern neurosciences together with philosophy and linguistics suggest that metaphors are the way we think and we make experience of the world, as stated in their crucial study by George Lakoff and Mark Johnson “Metaphor is for most people device of the poetic imagination and the rhetorical fl ourish–a matter of extraordinary rather than ordinary language. Moreover, metaphor is typically viewed as characteristic of language alone, a matter of words rather than thought or action. For this reason, most people think they can get along perfectly well without metaphor. We have found, on the contrary, that metaphor is pervasive in everyday life, not just in language but in thought and action. Our ordinary conceptual system, in terms of which we both think and act, is fundamentally metaphorical in nature. Th e concepts that govern our thought are not just matters of the intellect. Th ey also govern our everyday functioning, down to the most mundane details. Our concepts structure what we perceive, how we get around in the world, and how we relate to other people. Our conceptual system thus plays a central role in defi ning our everyday realities. If we are right in suggesting that our conceptual system is largely metaphorical, then the way we thinks what we experience, and what we do every day is very much a matter of metaphor” (1). Th is is the reason why language as conceptual system we use to communicate –to act and to react- “is an important source of evidence for what that system is like”. Now it could be easier to make clear the reason why I used the word “enemy” referring to the virus that causes AIDS. Many years ago I started to make interviews to key people around the world that have been in a privileged position to tell me about what the HIV epidemic was and still is in terms of impact, meaning, eff orts, and research. Every year I make news interviews to some of these persons in order to underline diff erences and novelties in the fi ght against AIDS (“fi gth”: a metaphor).
In one of these interview I asked to Julio Montaner to define for him as scientist what is HIV. He answered “the enemy”, underlying trough this word his personal, professional and public involvement in this fi eld. Th is fact could be the fi l rouge the three interviews that constitute the K factor of this HAART Journal: during the IAS conference in Rome we met Françoise Barrè-Sinoussi, Anthony Fauci and Julio Montaner in order to set up a triangle as the ideal shape that could stop AIDS: basic science perspective plus policies of research plus evidences from strategic studies. All together against HIV, to stop AIDS.

Articolo presente in – HAART and correlated pathologies n. 12 –

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