Dr. Rupert Whitaker blogs

What did the NHS ever achieve?

2012-03-22T17:46:00.000Z

I’ve been reading with dismay about the Health and Social Care Bill which will destroy the little remaining of the NHS. It happens that I’m studying Allyson Pollock’s book “NHS plc” at the moment and on page 215 of the hard-back edition she states: “It is easy to lose sight of the benefits the NHS secured: integrated hospital services with minimal internal administrative costs; district general hospitals, bringing specialist services for all but the rarest conditions within reach of every family; the evolution of general practice to offer 24-hour primary care by doctors trained for the job, and continuity of care for everyone; robust structures for data collection and planning in order to match reources to needs; the education and training of medical staff; and the gradual equalisation of service provision across the country, while sstill allowing for experimentation and innovation”.

It is also worth noting what she writes a little earlier: “The high-profile private sector failures of the railways, government information technology systems, the Benefits Office, the Passport Office, the Channel Tunnel and long-term care all illustrate the difficulties governments will face when confronted by the monopoly power of private suppliers of health services”.

It is well worth remembering what the NHS did in fact bring to the public. We now have the prospect of insurance companies’ obstructionism, a Financial Services Authority that is disinterested and toothless in protecting patient-interests, and privatised services where clinicians are gagged from speaking out against malpractice because it is against the shareholders’ financial interests. This is what the Conservatives and Labourites have jointly brought in synergy with the obstructionism and self-interest of unions and physicians. The government has the responsibility for protecting the public’s interests but has signally failed to do so. Where is the Royal College of Public Medicine that protects the public’s interests? No reputable scientist or researcher can honestly say that privatisation increases health-effectiveness, so why are we seeking to replicate America’s profound and evident failure? It boggles my mind.

An advertisement for an intern has just been posted

2012-03-13T17:24:00.000Z

Please see: http://www.idealist.org/view/internship/GSSw4bnb4n2D/

AIDS@30: 12—The leading-edge in services to people with HIV; the future of activism in the West

2011-11-18T13:51:00.000Z

It should be unnecessary to say that addressing the social and mental consequences of living with such medication-toxicities as lipodystrophy etc. lies outside physicians' expertise, yet even in the so-called flagship clinics, the services have been and continue to be physician-centred and inadequate to address these realities. Therefore, people with HIV do what they can to soothe themselves, which are behaviours often associated with poor mood or anxiety and usually detrimental to health and social wellbeing. And it is these issues that drive disability, the inability to get on with daily life, the rapidly revolving door of the HIV and sexual health clinics, the increasing HIV infections, and the increasing HIV costs that are unsustainable long-term. Perhaps the saddest aspect of all this is that, not only are comprehensive biopsychosocial services essential in creating health for patients, they solid and repeated research shows that they also cost about half of what physician-centred services do.

So let’s look at the nature of current services for people with HIV in Britain, as one example:

I'd like to draw your attention particularly to the fact that there is no measurement of health-outcomes, so there is no way to know how effective services are in making people healthy. As this is an area of expertise in applied behavioural science, I can only draw your attention back to the attitude of the government advisor cited earlier to show that measuring health-outcomes is anathema to physician-centred services. To such professionals, despite the rhetoric, it's just window-dressing as they have the pills and that's all people with HIV need. The significance of this is that we are going to run out of the ability to pay for physician-centred services to cope with the increasing burden of HIV and the community-based response is no longer there to cope with the consequences of this.

So, let me close now with a few comments about the future of activism in the complacent West. HIV activism has been a remarkable offshoot of a well-established historical phenomenon that started with the civil rights and the liberation theology movements in the Americas, particularly South America, and the post-colonial politics of participatory democracy, devolved governance, empowerment and political autonomy. The aim in such movements has always been to enhance knowledge-transfer to and from communities and social movements in order to regulate governmental misconduct and its failure to regulate and control abuses by vested interests.

Treatment activists should look to the past and learn the lessons that have slipped by in the relief of antiretroviral therapy. Treatment-activists should then look to the future and embody these lessons that clinicians, scientists, and civil servants are still unwilling to learn. The community should also emphasise the commonalities with the challenges posed by other chronic illnesses and the need for radically redesigned medical services, and knowledge-transfer across parallel organisations nationally and internationally. Above all, such comprehensively biopsychosocial services must revolve around public participation of a novel kind or they won't survive.

The primary goal of participative medicine—when it's performed as a service to society, rather than to its providers—is to be maximally health-effective. Medicine that fails to do so is therefore by definition bad medicine. And that is what we have in Western HIV services and particularly so in the NHS. With the increasing burden of HIV and other chronic illnesses, we can't afford to fail to learn the lessons from 30 years of AIDS.

AIDS@30: 11—What are the primary problems in addressing HIV clinically in the West?

2011-11-18T09:41:00.000Z

So what is a vision for the future in the post-96 world of HIV? Let's look at the concept of health This is the definition created in 1959 by the World Health Organization.

For anyone with experience of clinical HIV services in the UK, it's clear that such services treat the virus, not people and their health. In order to deliver real health-outcomes, any service for people with so-called chronic, manageable diseases such as HIV needs to address the comprehensive, biopsychosocial nature of the illness, not just the virus that's causing it. This is the crucial problem in the lack of vision in HIV in the West. Chronic illnesses are driven by social, mental, and behavioural factors above all, in their onset, their persistence, their resistance to treatment or rehabilitation, and/or their risk of developing secondary diseases. Pills are not enough. In 2002, the World Health Organisation published a report that estimated that chronic illnesses comprise over 60% of the total burden caused by disease in the world. The same report estimated that by 2020 even developing countries can expect 80% of their disease-burden to come from chronic illnesses.

Let's look at just the mental aspects of chronic illnesses as an example, leaving the social and behavioural issues to the side for the moment, and also let's just step back and look at the larger picture of chronic illnesses in toto. This graphic is from a very large international study reported in the Lancet.

Here we have a chart of the contribution of mental illnesses to disability burden among non-communicable diseases. You can see from the cut-out section not only the size of the contribution, but that most of it consists of unipolar disorders (i.e., depression) and substance- and alcohol-use disorders. This is a very conservative estimate as many mental illnesses—the common colds of the mind—don't reach diagnostic criteria for inclusion in such a study, but still significantly affect behaviour and social functioning that are relevant to disability. There are also other contributors in this which are directly relevant to HIV too as the population with HIV survives into old age: namely, cancer, cardiovascular disease, and neurological disorders such as stroke and dementia, all of which people with HIV are at greater risk for developing. A friend of mine was diagnosed with HIV-associated dementia only last year. He is in his mid-40s.

What this doesn't show is the interaction of such disorders in contributing to disability, and that's what I'd like to turn to now.

Here we have some of the reality of the miracle that was delivered by HAART post-1996. This is lipodystrophy affecting the face, the upper back, and the viscera, and it's due to a serious derangement of fat metabolism caused by HAART. While medications have saved people, they have also made life not worth living sometime. I have spoken with a number of people over the years who have regretted surviving because of the difficulties that survival has caused them to face.

What is so evident on the outside in these pictures hides something worse on the inside, as disordered fat metabolism also affects wider metabolic and cardiovascular systems and increases the incidence of diabetes, atherosclerosis, heart-attack and stroke, leading to diversification of the chronic disease presentation and to much greater complications in treatment. The consequence of such treatment is much like cutting one head off the Hydra and two more appearing in its place.

AIDS@30: 10—The multiple failures of physicians' 'leadership' and activists-turned-executives

2011-11-17T09:37:00.000Z

As I said earlier, the AIDS Service Organisations created the template for services to people with HIV, which have been extremely successful. These included a significant degree of participation in medical services, not just as actively engaged patients, but also in the organisation and delivery of those services. This was resisted at first by the physician-profession until there was clearly no point in trying to assert authority in a situation where they had frankly little to offer. Even palliative therapy was outside their expertise.

Following 1996, the advent of HAART, and the collapse of the civil response to HIV in the gay community in particular, there was a gradual reassertion of the earlier, already obsolete model of medical services and they assumed once again a physician-centred delivery-model. Rather than holding on to the lessons learned and valuing the effectiveness of comprehensive biopsychosocial services, it became largely just about pills again.

Now, the affected communities are no longer particularly engaged with their health and physicians are neither able nor qualified to intervene at crucial learning-points in a person's interaction with medical services to change that picture. Indeed, dependent patients are historically what physicians rely on. The consequence of this is that, once again, we have a revolving door at the clap clinic, but we also have increasing problems with multi-drug resistant infections, treatment-failures, and unnecessarily increasing costs in HIV services. It's also the reason for many late diagnoses in the immigrant communities from Africa, which cause not only misery to individuals but unnecessary social and financial costs.

I ascribed this phenomenon earlier to a failure in the civil response, but it's even more of a failure of the physician-profession. It is essential to note a difference here: community activists are rarely paid to do their job. Physicians are paid to do so, and handsomely, yet as a profession they have no wish to do things differently. A few years ago, I asked a senior government advisor on HIV why, after more than two decades of a behaviourally driven epidemic, he was opening up the advisory committee to behavioural scientists rather than solely physicians. He said it was ‘window-dressing and would not change the way he ran the group’. In Britain, this attitude pervades the physicians' response to HIV and is the reason why the British HIV Association (or BHIVA) is actually little more than a physicians' HIV Association and has little relevance to the challenges facing people with HIV today.

Above all. it is this attitude of narcissistic entitlement among physicians that's responsible for the increase in new infections in the UK, the failure to retain the lessons learned, the failure to learn the new lessons, and the failure to develop fresh vision. There is no longer a sense that the communities affected share a responsibility with their medical services for maintaining their health. This sort of attitude is also the reason why best-practice guidelines produced by BHIVA and more recently the Scottish Government reflect what physicians and the NHS are willing to do, rather than what people with HIV need in order to get well and stay well. Yet there is no critique of this from the community-based organisations who are supposed to represent the community of people with HIV. The reason for this is that it's not in such groups' own financial interests to rock the boat and the executives are now primarily apologists for the lack of progress. Nowadays, money is more important than ethics or leadership in community organisations.

In 1993, the veteran AIDS advocate Daniel Defert said that "Although [...] [AIDS Service] organizations developed their own identities, at no point did any one of them completely relinquish the interests of the infected or affected to existing medical and social institutions. These organizations continue to assert themselves as long-standing partners of the public response to AIDS". Today, in 2011, we can no longer say this, as some of the organisations have not only relinquished the interests of the affected but they have become social institutions themselves, with the loss of vision and potential for the future that that entails. Obstructionism, wooden-headedness, complacent executives too long in post treading the same tired circles with little new to offer. Yesterday, the HIV services were run by passionate activists; today they're run by managers; in the future, they need to be run by educated experts with a vested interest in the outcomes. Britain, in particular, can no longer afford its love affair with amateurism.

AIDS@30: 9—The problems of globalisation, commercialisation, and the loss of community-based vision

2011-11-16T09:36:00.000Z

Other factors involved in such failures have been the nature of the globalisation of treatment activism, including the involvement of international bodies such as the World Trade Organisation, the UN, etc., and the relative loss of political leverage in dealing with bodies that are not answerable to the electorate. They are therefore rather immune to the effects of political shame.

On the international scene, we have seen marvellous dreams laid out, such as the Doha Declaration on Trade-related Aspects of Intellectual Property Rights, or TRIPS, and the authorisation to manufacture generics in the situation of a pandemic, only to have this advance then crippled by licensing issues through back-room dealing from pharmaceutical companies.

The increasingly transnational character of treatment-advocacy has meant that there's been a much increased challenge to community-based organisations. And there has been a lack of vision among experienced Western treatment-activists to foresee a future for civil empowerment and medical democracy since effective medication has come on line. Over the past 15 years, the game has required exponentially more expertise, but treatment-activists and community-based organisations have not kept up. I do understand it to a degree, as I know the reality of burnout, but it still reflects a failure to recognise that vision is still needed in the privileged West.

This failure of vision has happened in tandem with the commercialisation of community-based organisations and the complacency of activists-turned-executives who actually have few educational resources to deal with the new realities post-96 and post-2000. They have little knowledge of the wider picture of medicine, public health, or science and thus no idea how to move the agenda forward other than by looking at the unintelligent and default issues of profit and market-share. Such executives need to skill up and smarten up, or move on if they've been in place too long and are too complacent and closed-minded to do what is necessary. We've had over ten years now to do this in the West and I don't see any vision, except for those organisations working primarily with the global South.

So where should the West be heading? This is where we come to medical failures ...

AIDS@30: 8—The failure to maintain social responsibilities towards and within affected communities

2011-11-15T09:33:00.000Z

One of the principles of the civil response to AIDS was that there was a balance between rights, privacy, and dignity on the one hand, and the needs of society in controlling the spread of the disease on the other. This was achieved through legal action and political pressure, including direct action, notably by ACT-UP. The saddest part of the current situation is that these principles are also the best able to deliver what is known scientifically to be necessary to control the disease. And yet this lesson has been forgotten while long-discredited models of public health surveillance, including name-based reporting, are continuing in various areas such as Eastern Europe. This serves to drive people underground and promote late presentation and early death. Similarly, as in Britain and many other places, the punishment for breaches of confidentiality are effectively nil, as there is little toothy regulation to ensure patients' rights. I hear regularly of these issues from people with HIV.

This failure means that the well-established frameworks for effective intervention, including the rights-based framework now recognised internationally but not enforced, has ceded to issues such as criminalisation—and this includes Britain, a problem of justice and ethics compounded by the fact that access to the legal system is primarily a privilege of the rich. While men are prosecuted for transmitting to women, as far as I'm aware no woman has been prosecuted for infecting her baby by refusing medication, nor have the laws used in the criminalisation of HIV been used in criminalising the transmission of other infectious diseases in the same way.

So, we're seeing the pendulum swing back from a rights-based framework. While such a framework is essential, so is the (formerly implicit) responsibilities-based framework, of shared responsibility in the solution to the pandemic, and it's increasingly necessary to make this latter framework explicit as the lifelong costs of treatment will eventually get too much for any medical service-system. Then we will see treatment-rationing because of a failure of civil society to share responsibility for personal health, as used to occur pre-AIDS. The London Specialised Commissioning Group, for example, is a special group that pays for the most expensive diseases, and over half of its budget is already dedicated to HIV. Long-term, people with HIV can't afford to have others get infected. A responsibilities-based framework needs to be developed to prevent the pendulum swinging back to a punitive degree; criminalisation of sexual transmission of HIV is only the start of greater problems.

Another failure of the community response has been to ignore the realities of treatment-resistance. In public health research, the practice of 'sero-sorting', the practice in which some HIV-positive men will have unprotected sex with other HIV-positive men since they're both already infected. From a public health perspective this was thought to be a good thing by containing the circulation of the virus in the existing pool. However, with HAART, it has been responsible for increasing the transmission and promotion of drug-resistant virus, thereby increasing costs long-term and reducing treatment-options. It's also no guarantee for HIV-positive men that their partner is not HIV-negative and simply lying in order to get infected (so-called ‘bug-chasers’); these cases are not so rare.

AIDS@30: 7—The failure of creating expensive technical solutions to social problems; the failures of community activism

2011-11-14T10:59:00.000Z

Another failure was the development of technical solutions to social problems, such as pre-exposure prophylaxis (PrEP). This is where, if you're going to go out and have unprotected sex, you can take some anti-HIV pills and avoid infection; of course, there's no protection from other sexual infections, including hepatitis viruses, drug-resistant syphilis, and so on. The Geneva-based HIV-positive activist and educator, Christopher Park has asked in this respect: "Is it indecent that uninfected people should pop HIV drugs recklessly (and at the risk of becoming treatment-resistant), while the overwhelming majority of the HIV-infected worldwide will die without ever seeing a little blue pill?". This moral call was echoed furthermore in the early trials of PrEP, which were eventually stopped for ethical failures in design.

The biggest failure in science is where the great achievements of civil participation in science has not only NOT been extended to other diseases, but has been scaled back since the advent of effective HIV therapy. This is due to a lack of vision on the part of the most accomplished treatment-advocates as well as burn-out. In the UK, it’s due even more to a lack of vision on the part of civil servants in the Department of Health to recognise the benefits of community participation and to know how to engage with such people as a resource. And here we move into the failures of community activism.

After 1996, there was a huge sigh of relief as HIV seemed to turn into a more manageable. chronic condition for those who could access the necessary medications. If we return to this slide, previously we saw in the red line the impact that these medications had on deaths from AIDS in Europe. But if you look at the blue line, all you see is a creep upwards in Eastern Europe at the very time that this should be decreasing or staying at zero.

Now, if you look at the case in Britain too, certainly medications affected the rate of deaths from AIDS, but within a few years the rate of new infections started to sky-rocket again

Some have argued that this is largely due to the influx of heterosexual immigrants from Africa who were already HIV-positive. Certainly, the discovery of pre-existing infections in immigrants is included in this but if you look at the rate amongst largely indigenous men who have sex with men, this rate is also sky-rocketing.

So immigrant-bashing won't work scientifically. There is a larger problem. If we look at the global picture, I'd like to draw your attention not to Africa, but to Eastern Europe, particularly Russia, the Ukraine, and (what's not really visible here), Estonia. More than 1% of the entire population of each of these countries has HIV. About 80% of those infections are due to intravenous drug use, and the infected population as a whole is still contained within socially marginalised groups.

We know what to do to here, but we're not doing it. The lessons from the West have not been transferred to the East and prevention and treatment-activists as a whole have not engaged adequately with these communities. Local community-activists are not getting through to their governments. Instead, understandably, there has been a focus on the political pet of the global South but with the expansion of Europe and the porousness of borders, this is obviously a problem in itself but also a problem waiting to move West.

AIDS@30: 6—The failure of medical leadership; salient failures in scientific professionalism

2011-11-11T09:08:00.000Z

Now, before I move onto the Failures and Unlearned lessons in science, community activism, and medicine, I'd like to point out that there is a glaring hole in this paean to triumphs, and that is of triumphs demonstrating medical leadership. The successes in treatment-development have been scientific successes. The successes in designing new models of delivering services to the sick are rightly claimed by community-based organisations, which developed the models of care and led the way in how these should be managed and delivered. Likewise, the humanisation and integration of medical services was led by the community—and resisted by physicians until they were too overwhelmed by the case-load to argue. Although there are, of course, very significant individual exceptions and variations internationally, these exceptions prove the rule when it comes to the physicians' profession as a whole. We still see it and it relates to the very serious problems we face today.

Firstly, there was a failure to minimise political grandstanding by the misuse or misunderstanding of science by clinicians and non-clinicians. Three examples come to mind: the announcement by Margaret Heckler on 23rd of April 1984 that the physician Robert Gallo had isolated the virus responsible for AIDS, which he called HTLV-III, and that a vaccine should be ready for testing in two years. Gallo had not discovered it, nor was it a member of the HTLV family of viruses, but the stunt was a masterful PR catch-up attempt. The second example was of physician David Ho's biologically unsound assertions that total viral eradication should be feasible. And the third was the misuse of epidemiology by Senator Jesse Helms to implement travel and immigration bans in the USA when, in fact, the country was a net exporter of the disease.

A repeated failure has been the inability to ensure that good-quality science was used to inform journalism and to limit discrimination. Much of the original research on transmission and causation was non-scientific and simply fuelled speculation about Gay Immune Deficiency, sex tourism by gays in Haiti, etc. While salacious, it simply represented ignorance on the part of those who were used as talking heads. I question whether, if AIDS had been found in white heterosexuals only, one would have ever heard of "Hetero Compromise Syndrome" being spoken of by senior physicians.

Secondly, there was the failure to develop a carefully scientific argument for the role of HIV in the pathogenesis of AIDS. This was not a simple task as slow viruses such as HIV simply don't abide by Koch's postulates as to the causative nature of an infectious pathogenic organism. But the determination of the evidence necessary was not even formulated, as in a solid and thorough scientific analysis. This failure gave rise to the unnecessary and highly destructive movement of AIDS denialism, promoted by virologist Peter Duesberg, with the tragic consequences for South Africa in the form of its President Thabo Mbeki, who it's estimated allowed 300,000 unnecessary deaths through his denial.

...

AIDS@30: 5—Successes in the social and behavioural sciences; US immigration policy and the IAS ban

2011-11-10T10:00:00.000Z

There were many successes in the social and behavioural sciences too, although these are more difficult to quantify. Firstly, there's the success of community-based public health interventions in changing sexual and drug behaviours, even though these have been entirely dependent on governmental willingness. Part of this is the development of the harm-reduction framework as well as the use of community-based interventions related to needle-exchange. A thorough understanding of this historically shows that the success of these interventions has been phenomenal. There were also the significant developments in the methodology used in epidemiology and the understanding of how epidemics work and spread. With HIV in Africa, an example of this was understanding the trucking routes across the African continent and the spread of HIV via the use of sex-workers by truckers, loggers, miners etc who would travel for work. These advances in public health and epidemiology have been useful in understanding everything from foot and mouth disease to SARS to avian flu. And this has also translated into much better public health surveillance and modelling.

One point I'd like to make in particular is the issue of travel bans on people with HIV. While doing my PhD at Boston University, I worked with Richard Edwards—a sociologist and one of the team at the inception of the Terrence Higgins Trust. We worked on two papers modelling the public health impact of immigration restrictions on people with HIV to America, which were published in the journal “AIDS and Public Policy”. We presented this research at the Montreal AIDS conference and also later at the San Francisco AIDS conference and on the basis of our work, we were gratified that the International AIDS Society voted to ban any future AIDS conferences from taking place in the USA until the US lifted its restrictions on travel for people with HIV. It meant that the next AIDS conference that was planned for Boston was moved to Amsterdam instead and no conference has taken place in the US since then. However, since the lifting of the ban by the Obama Administration, I'm glad to see that the next AIDS conference will be in Washington DC in 2012, for the first time since the IAS voted to support our policy-research. It’s important to acknowledge that simple, applied research can have a significant impact in the right place.

AIDS@30: 4—Civil advocacy and changes in clinical research; the successes of biological science

2011-11-09T10:00:00.000Z

Many community-based organisations lead the way in promoting ethics and efficacy in both clinical and public health science. What falls under the broad rubric of treatment-advocacy has included what is researched, the ethics of research, the development of clinical research methodology, and the social utility of technical solutions to social problems such as HIV-exposure in occupational injury and unprotected sex.

Identifiable advances include the end of placebo-controlled trials when people are otherwise facing certain death; the diversification of end-points (e.g., moving from death as an end-point to the use of clinical biomarkers such as CD4 cell counts and viral load); the inclusion of diverse patients groups, for the simple fact that AIDS expresses itself differently in men and women, Whites and non-Whites, adults and children, so it's important to see how a treatment works in all these groups rather than just in white men; and also compassionate-use protocols, in which those ineligible for the proper clinical trial can still gain access to the experimental drug and community-based researchers can use a more natural-history approach to the efficacy of a drug and its toxicities.

These are all highly significant triumphs in the history of civil advocacy in clinical science. I'm not aware of historical or policy research that has focused on the intersection of civil empowerment with the history of scientific practice, but given the great potential for this to expand in the future, I think this would be a fruitful topic for inquiry in relation to AIDS.

So, let's step back and do a very brief review of the primary scientific triumphs. They are of paramount importance to the successful control of HIV, but many of them are obvious and already well celebrated.

If we look at the triumphs of biological science, we can identify the discovery of HIV at the Institut Pasteur in Paris; the understanding of the molecular structure and function of the virus, leading to the discovery of what are now several classes of antiretroviral drugs—an advance comparable to the discovery of antibiotics. We also have the success of the prevention of HIV-transmission from mother to fetus through medication.

This was not a simple process, and there were many dead-ends and acts of scientific desperation: I remember most of the early trials of drugs such as Peptide T, Foscarnet, AL721, dextran sulfate, hpa-23, ribavirin, suramin, cytokines such as interferons alpha and gamma, interleukin-2, and GM-CSF, not to mention a myriad of phytochemical and herbal decoctions, and I used some of them myself, particularly Chinese herbs and interleukin-2.

It's worth looking for a moment at the reality of the development of highly active antiretroviral therapy—also know by the acronym of HAART—which became available in 1996.

As we can see from the red line here, 1996 showed a radical downturn in deaths from AIDS and this was due to the availability of protease inhibitors.

These inhibit a crucial enzyme produced by HIV that is necessary for it to reproduce the components to create new virus particles. With a crippled protease, HIV is unable to reproduce and spread itself within the body. This biotechnical success in developing protease inhibitors obviously left the public at the mercy of pharmaceutical companies and there was very clear profiteering and price-gouging by them. This utterly indefensible practice was successfully challenged by treatment-advocates over the next several years and around 2000, generics became available. One of the levers was the PR disaster that this profiteering created for the pharmaceutical companies involved and Glaxo Smith Kline was particularly accused.

The effects of enabling the production of generics is worth looking at. Within one year, the prices of proprietary anti-HIV medications, as we can see here, were forced to drop to less than 10% of their original.

AIDS@30: 3—The civil response

2011-11-08T10:00:00.000Z

Let's move on to community successes. The first organisation founded to provide a response to what would become known as AIDS, was Gay Men's Health Crisis (GMHC) in New York in January 1982, followed closely in April 1982 by what later became the San Francisco AIDS Foundation. Then the first European AIDS service organisation, the Terrence Higgins Trust, was founded in the autumn of 1982, followed by Aides Paris in 1984.

GMHC invented the template for AIDS Service Organisations and we in the THT relied heavily on their vision and experience when we started, adapting it to the more socialised environment of Britain. Over time, more organisations sprouted up in response to the clear and urgent need that no single organisation could meet, and a collaborative approach developed, most noticeably in the USA, and much less so in Europe.

The community invented the first comprehensive services and new models for them (for example, what became known as the San Francisco model), we invented the first community education and prevention strategies, invented new concepts and practices in community-based expertise (Project Inform, AVERT, the National AIDS Manual), invented new ways of doing old things that were not working for the populations addressed, identified and fought discrimination and neglect at every level—from the early calls for quarantining and tattooing people with AIDS to the more recent and subtle issues of tokenistic consultation and social marketing-type opinion surveys—we galvanised governments and showed leadership where there was little or none. We developed new ways of organising and collaborating and, together, we saved many hundreds of thousands of people, perhaps more, from death and also from lives of unnecessary hell.

A special note should be made of the role of ACT-UP, an international direct action advocacy group that was developed in response to the perceived political inadequacy of GMHC by one of its founders, Larry Kramer. It was effectively organised as an anarchist network and from the start it never pulled its punches. Here is a picture of the political funeral of Steve Michael, founder of the Washington DC chapter of ACT-UP, in his coffin in front of the White House. This particular demonstration was about a failure of the government to implement adequate sex education and provide medical services to the poor. ACT-UP used boycotts, demonstrations, and a great deal of nonviolent direct action and civil disobedience. It developed fearless and innovative PR methods and benefited from the fact that many of its members were high-achieving professionals in media, public relations, advertising, design, and journalism, not to mention others who were scientists and clinicians, who did teach-ins to help those working in treatment-development advocacy. I don't think there has ever been anything like it and it still continues its work today, although much less widely.

The international collaboration between people with HIV gave rise to both the Denver Principles—the foundation of the empowerment movement for people with HIV—and also the principle of the Greater Involvement of People with HIV/AIDS (GIPA) which U.N.AIDS now says should be integrated into all responses to HIV nationally and internationally. These were important events in what became a new, rights-based model of effective prevention. The community also modelled the sharing of responsibilities in response to the epidemic and was also very careful to avoid placing the entire burden of HIV control on HIV-positive people, identifying the need for the HIV-uninfected to take responsibility for their health; this was one of the first aspects of a right-based discourse on public health and medical interventions.

AIDS@30: 2—Introduction

2011-11-07T10:00:00.000Z

I'm going to look over the past 30 years of AIDS and pick out some salient points that illustrate the community, scientific, and medical triumphs, failures, and unlearned lessons of
this pandemic. I won't look much at governmental failures or we'd be here all year. I'll be focusing particularly on the responses in the West, because it’s the West where
we've had the greatest chance to learn from these decades. I'll also be picking out specific examples, rather than providing a comprehensive overview of the issues.

Firstly, however, I have to state that I am speaking as an individual and not on behalf of the Tuke Institute. The views expressed are entirely my own. While I'm going to assume a significant amount of knowledge of the history of the epidemic in order to pick out points that have something to tell us, I'll give a brief historical framework.

What we know now is that HIV emerged in the late 1950s in Africa, most probably in West-Central Africa, from Cameroon moving into the Congo, and was due to a chimpanzee virus jumping species through the eating of bush-meat followed by the virus then adapting to humans. The first evidence of an epidemic emerged in the West in 1981 in small clusters of gay men, although this group was joined shortly by haemophiliacs, intravenous drugs users, Haitians, and then became evident in African heterosexuals. HIV the virus was discovered in 1983 by the now-Nobel Laureates Barré-Sinoussi and Luc Montagnier at the Institut Pasteur in Paris and the first tests for HIV infection became available a year or so later.

Following the emergence of the epidemic, the affected communities in America and Europe responded with immense speed and continued to lead the response internationally until 1996, when effective medications for treating HIV became available. It was around 1996 that there was a shift in the relative burden of HIV infection to deaths from AIDS, although since then the pandemic has resumed its course. 1996 was a crucial threshold in the pandemic and one that has much to teach us.

AIDS@30: 1—A series of blogs from a lecture given at King's College, University of London

2011-11-06T22:01:00.000Z

I recently gave a lecture at King’s College, University of London, on AIDS@30: Triumphs, Failures, and the Unlearned Lessons (http://bit.ly/sWZdXb) at the invitation of Dr. Richard McKay in the Department of the History of Medicine. This is the start of a series of blogs extracted from that lecture, which was a pleasure to give and, I’m relieved to say, received a warm and very engaged response. Writing it gave me the opportunity to review what I thought are some of the most significant or salient phenomena in the past 3 decades of the HIV pandemic and frame particularly where, in the West, we need to be looking over the next decades with HIV. I hope you find it interesting and, please, do feel free to leave any comments that you think will be helpful to the wider debate.

Online reviews of clinicians' performance

2011-08-09T15:43:00.000Z

The American Medical Association (a solely physicians' body) published a news report recently (here) about physicians being unhappy with negative reviews from patients and their families. Of course, this is not a problem in the UK, where patients have no powers to comment publicly or openly about the quality of the services they receive, because of the risible libel laws that exist in the UK (here). If we did, then I would have words to say about several neurologists whose competence I have serious questions about, both as a patient and as a clinician myself. The AMA poses this as an ethical debate and it is part of a larger ethical debate about providing private medical services that are not comprehensive and that therefore can not expect to deliver adequate outcomes in chronic illness care, at least. If one is going to promote medical consumerism by providing only privatised and balkanised services, using advertising and market-competition, then such problems as using social media to display "patient satisfaction" in the guise of rating physicians' performance are to be expected. Consumerist providers are asking for trouble and they are getting it.

In the Tuke Institute's consultation document on Participative Medical Governance (here), I advocate for the use of online reviews of clinicians' performance but in a moderated way. They should be about rating a clinician's ability to deliver health-outcomes, not "patient satisfaction", and in reference to specific variables that are known to be essential to delivering them. Then, instead of these star-rating systems for hospitals, we will have realistic, individualised, and relevant data on which to judge performance in the specific and the aggregate. With participative practice in health-services, it's not that difficult. Until providers are willing to do this, then they will suffer from unwanted reviews by web-savvy public.

The problem with working with journalists: updated

2011-06-12T17:15:00.000Z

Update:

I was really gratified to hear from Paula Williams about how she viewed the issues I raised: a thoroughly professional response. She explained how the problems had arisen and what she had done to get corrections put in place, including re-voicing the filmed interview. What happened was because of drops in the connection of information going down the line and was an identifiably reasonable but unwished-for occurrence on all sides. Paula's was a great response and thanks to her industry and assiduousness, the facts have been corrected and the issue sorted, with similar responsiveness from actors further down the line. Hers is a sort of professionalism that many could learn from and points out the need for the person at the point of contact—be that a journalist or a primary health-service provider—to have the influence to ensure that things further down the line are joined up to the start and kept on track (if I may fudge my metaphors). I'm happy to say that this is what occurred with my experience of Sky News. Keep up the good work!

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On Friday last, I did an interview with Sky news. This led to a spin off piece on the web: http://bit.ly/klUFpK Unfortunately, there is little in what I was quoted as saying that I actually said. And the year of my infection was 1981, not 1991; you would hope that basic facts like these would be covered correctly by responsible journalists. Not only is it a question of sloppy journalism (by Jane Chilton), but it is indicative of a similar problem in health-services: there is a large bureaucracy where the journalist responsible for interviewing (the delightful Paula Williams) is not responsible for anything that happens downstream of the interview. It is the same process of a diffusion of responsibility and a lack, therefore, of accountability that occurred in the bureaucratic machines that made a number of social catastrophes possible: the Holocaust, the NASA disaster with the Challenger shuttle, and others analysed in Professor Guy B. Adams' book "Unmasking Administrative Evil (Rethinking Public Administration)". It is a prime mechanism of ensuring the same banal evil today and one on which the NHS relies to evade accountability in its services.

In health-services, we have a clinician—typically a physician—who has primary contact with a patient. Yet, then the patient gets handed on, to other clinicians, other departments, administrators, etc. There is typically a lack of continuity of care, of case-management, of anything that refers to the patient's health-needs other than attacking a disease. When there are problems, the patient has to chase each one of them down—on top of dealing with the challenges of being ill—and try and rectify them in a system such as the NHS that is typically resistant to any inquiry or challenge at all. Confidentiality is breached, the wrong medications are prescribed—or medications prescribed that cause serious toxicity when combined—a clinician acts outside her area of expertise and says a self-determined patient has a personality disorder and pejorative comments are written in the medical notes, which the patient can't rectify to provide a more balanced picture. If there were one responsible clinician for a patient's services, there would be one point of contact for the patient to rectify problems, instead of those problems cascading along a system through which responsibility diffuses and accountability vanishes.

But it is also one of the prime mechanisms that I have addressed in the design of health-services that prevent such problems in the first place (see the paper on Participative Medical Governance).

While I would like to say that it has been 20 years, rather than 30, that I have lived with HIV, it would not be accurate: living for those extra ten years with HIV changed the course of my life (some music-lovers might give thanks ...). Getting facts wrong on the news is not as grievous, of course, as making a mess of a patient's services, but the issues are the same. Who will take responsibility for the misinformation and rectify it? If the facts are important enough to report, they should be important enough to get right. Unless it's just truth-free stories that Sky News looks for: perhaps Sky News is Britains's version of Fox News in the USA—now notorious for its lack of journalistic or any other form of integrity. It will depend on whether Sky News makes the corrections or not; if they do, I shall let it be known and hope, perhaps naively, that it doesn't get it so wrong again.

Guest blog—the story that the House of Lords Select Committee on HIV won't get to hear but should

2011-04-14T15:10:00.000Z

This is a guest blog from someone who was kind enough to write to me about the reality of his own care with HIV. This is the real story that the House of Lords Select Committee on HIV won't get to hear but should. I asked for permission (and received it) to have it as a guest-blog for a number of reasons: here is a well-educated man who is highly competent; despite the public health messages, he got HIV; then he decided to make some change and ensure that he got well and stayed well from then on but entered the nightmarish reality of the NHS HIV 'care'-bureaucracy: there he is assured that everything is done for his benefit when most clearly isn't. It is the reality of administrator-centred and clinician-centred practice, a far cry from patient-centred service that results in real health. It is why the NHS doesn't work and never can until it changes its model of practice; as the Bristol Inquiry showed, it has nothing to do with funding. And the more competent the advocate, the more resistant the providers—as I know full well myself. It's a telling story and I'm going to Tweet it; if it means something to you, please re-Tweet it. Here's his story and it really should be heard:

"I've found a place of understanding – I have found the Tuke Institute! I've been reading over the past few weeks the work and evidence presented to the Lords Select Committee on HIV. I then found your own written evidence by chance – it not having been published by the Lords.

I'll provide a short bit of background so that what I go on to say is placed into context. I am a senior professional, I am educated past Masters level and I do have a sense of humour! I am also HIV-positive and I am now a patient who is struggling, a patient who is measured on a numbers basis and a patient who wants to engage but cannot seem to create that bind of trust, understanding and mutual respect with my “carers”. On reading your evidence [to the House of Lords], I had my light-bulb moment and I have begun to try and make sense of my place in the system of NHS care from which I cannot escape. I’ll try to write without emotion but this is difficult and, I suppose, I do write with a heavy heart.

I’m relatively new into this world of medical care and the clinical setting, where I'm expected to hand over my future health to a large NHS teaching hospital without question. However, I'm also a fast learner (possibly to my own detriment in this circumstances). I was diagnosed with HIV in early 2010. I was aware of the prevention messages and the messages that have been shaped since the late 90s that “it is better to know”, “prevention is better than cure” and “treatment is available for a near normal life-span”. I seized on these at the time of my unexpected diagnosis, entering care with an expectation that these seemingly open and welcoming messages would translate into a world of care and support where understanding of individuals and needs would be paramount. In the months which followed, however, I was unable to reconcile these messages with my experiences and the experiences of others which I have directly witnessed. More fool me. My now grateful understanding of those who have gone before me and the struggles of unsung heroes is something I cling to.

So where am I now? Well, I have a collection of letters from the Chief Executive of my local NHS Trust, covering apologies on subjects ranging from breach of confidentiality (as in unlawful ones), failure to follow processes (the Trust’s own), failure to provide adequate clinic care (missed diagnoses, treatment refusal, sub-optimal treatment prescription etc etc etc). I have doggedly pursued my good future health, perversely with an apparent effect on my health. I have had the meetings with Trust staff, I have had the haughty descriptions of how fantastic the service is and I have been given the explanations that every mistake which has been made, and every refusal to listen, has in someway been generated by the desire to only do the best for patients (yes, I still don’t get this). I am pushed to become institutionalised and I cannot do it.

I have questioned my own sanity, I have questioned my own right to care and I have wondered how it is so dreadfully possible to end up in a bloody fight. I have been the frustrated patient who is shut out because they raised their voice after being ignored and I have resolved to never be that patient again. I have been treated as the silly and petulant school-boy who cannot possibly have obtained a position in life where he has the capacity to question.

The situation of my care, and that of others, makes me sorry; sorry for myself and sorry for all of those who struggle to be heard. I am sorry for those individuals with chronic health conditions, many life threatening like mine, who want the best for themselves, but who fight a struggle every day to engage with their “care” providers in the same way they could expect to engage with any other service provider – be it their solicitor, their mechanic or their local baker.

Today, I write in the knowledge that I am now in a position where I am forced to communicate with my care providers through a human rights lawyer (I wish I was joking although I have managed to gain some objectivity and maybe a little bit of validation), where I live with the feeling that my personal health is damned if I stay within care and damned if I don’t.

Today I write in the knowledge that every professional skill I have learnt, and every piece of experience I have gained doggedly climbing to the top of a professional ladder, is being deployed and honed - and for what? To advocate for my own health and to advocate for the health of others. All of this within the system to try and effect change from within. I continue not for some sort of pursuit of martyrdom but for a pursuit of reconciliation and stepped change. I’m an individual, not a stereotype. I’m an educated individual, not a Google sponge. I’m an individual and I can be an equal – but who’s listening?

I look back on what I’ve written here. I question whether it is emotional, whether I am simply expecting too much and whether I am caught in a perpetual cycle of frustration and unfulfilled expectations (no matter how much they are adapted or lowered). I’m lucky that I can advocate for myself, I am lucky that I can take a deep breath on occasion and persevere to discuss my concerns and my needs as a patient in a modified manner in the hope that they can be understood by “professionals”. I am determined that they will hear me (without my shouting and whilst maintaining my dignity!) and if they don’t listen, at the very least I will keep going to my dying day knowing that I may have been heard. I know there are others who will not be heard and with that reason I keep going, and really for that reason, I’m contacting you now".

And I'm glad he did. His is one story that speaks exactly to what the Tuke Institute is trying to do. There are many, many stories (and if you've not read the stories on "Patient Voices"—http://www.patientvoices.org.uk/about.htm—then I'd recommend them) but this one is about the struggle to get services that help you get well and stay well and, meanwhile, to be treated like a human being, with dignity and respect. How can a sick service really help a sick patient?

Personalised medicine and patient empowerment as a political football

2011-03-03T13:40:00.002Z

Yesterday, the Health Secretary for the UK announced that 2/3 of the UK will start to benefit from more personalised care as General Physicians step up to meet the devolution of the NHS' administration to local providers. He also said that he was thereby handing power to patients and that it was a bottom-up response. Unfortunately, none of Mr. Lansley's ideas relate in reality to patient-empowerment or personalised services; the White Paper "Equity and Excellence: Liberating the NHS" itself had no idea how to deliver standards in practice or even require the necessary changes in GP services to ensure health-outcomes that are meaningful and sustainable. The Tuke Institute's Response to this White Paper was clear and thorough on these issues. Without such basic changes, there can be no "personalised care" that will make any real difference. And I don't think any reasonable person would think that a diktat from Whitehall could ever be considered a bottom-up approach, especially when the 'bottom' constitutes the service-providers' needs, not the public's. It is another game of political football—this time against bloated managerialism rather than bloated medicalism. When managerialism was brought in originally, it was to deal with the problem of excessive costs in physician services. Now that managerialism has failed to contain that—largely due to the fact that cost-effectiveness without reference to health-effectiveness is meaningless and a commercial model only understands a financial bottom-line—the British government has swung back to embrace physicians ... and privatised services. It is as useful as switching seats on the Titanic in an effort to stop the ship going down. Nothing has changed; physician-centred services are still as financially wasteful; clinical professions still have no idea how to share power and responsibility with patients (nor a wish to do so); and the ship is still going to be sunk by the costs of chronic illnesses.

New vision is needed, a new understanding of the obstacles to delivering health-effective services, and new forms of public participation in treatment, audit, and governance. Just as outlined in the Tuke Institute's primary paper (see here). Perhaps one day, the Department of Health will listen up and do its job rather than play political games. For those of who are having to fend for ourselves with chronic illness in the absence of effective services, this could not come quickly enough.

Review of my life and work in the Guardian newspaper

2011-02-02T18:34:00.000Z

Jon Henley wrote a remarkably generous article on my work and the experience behind it in the Guardian newspaper yesterday, accompanied by photos from Martin Godwin. It was a real pleasure to chat with both of them and I had a great laugh with Martin as he helped me relax in front of the camera. Certain anecdotes about a Hollywood actress and the advice she gave to help you look fresh and engaged in the photos proved invaluable.

It was a little bit of a shock to see the facts as someone else might see them. It reminded me of a time when a patient of mine, in the middle of a successful treatment for suicidal depression, said how glad he was that I was still here to help. When he said that, I felt raw and uncovered as I realised that he had googled me and knew not only I was gay but that I have HIV. I hadn't even thought that someone might do that. Naive of me, I know. But both then and now, it was disconcerting to see myself and my work from the outside in, not just the ever-present inside looking out. What might look rather good on the outside is just so hard on the inside.

I have had some marvellous emails in support—and only one that said I had wasted my life because I don't believe in his tradition of medicine (which, ironically, I do). These emails of support are always invaluable to me as it is rather a struggle to feel that I'm getting things to move forward. A recent update to the Advisors to the Tuke Institute reassured me that, despite my misgivings, a lot has actually been achieved. But creating change still lies ahead. That is where the rubber meets the road, as the saying goes.

How many of us have been put to the side of the road when we have not been able to keep up, through illness? Some such people have contacted me, offering their help, and I hope very much that this will be possible; the more people who can help build this Institute, then the better for all of us. Through the article in the Guardian, it has been great to know that this work means so much to people from all over the country. And the people who have been ill themselves really 'get it'. That's great. Let's make this a success.

A new libel law would help patients review clinicians' competence

2011-01-07T21:45:00.001Z

Nick Clegg has announced that he is to introduce real changes into England's libel laws—a long overdue move in the effort to shuck vested interests out of their protective shells and make English society a more equal and open place (http://bit.ly/eeOp5n). Currently, it takes a very brave person to speak up and risk a libel suit—and there are very few of us who can afford that. Yet it's very important for the public to be able to speak up and say when a particular individual is not doing their job—especially when that job is in public services and paid for by the public.

It may be a good step towards making the English public, at least, far less timid about speaking up and telling it as they see it. I don't care for unnecessary confrontation, but coming back to Britain after so many years in the USA showed me that people here are afraid to speak up. Criticism is indirect, 'diplomatic', or avoidant and all too often ineffectual. Little changes until people are pushed to unnecessary extremes to be heard and then we get shouting in the clinics—whereupon the complainant is ejected and everything continues badly as before. It is simply oppressive. Whistleblowing is punished, even when it is killing people—we only need to look back at the Bristol Inquiry and the current Stafford Inquiry to see that.

A while ago, I mooted the idea of a well-structured, scientifically based review-website to assess the quality of clinicians' performance in helping people get well during treatment for an illness. It would show how health-effective a clinician's practice is and it is more accurate and proactive than simply making a body-count of the dead as we do now. This idea effectively was shut down because I was told "we can't say that Dr. X has been ineffectual publicly, because it will cause a libel suit"—and this is when Dr. X has been paid by public taxes to provide a service to the public in order to help the public get well from illness. This reality is one of the reasons why clinicians have been untouchable and have had no greater motivation than their own integrity to do a good job. When a clinician has integrity—and we know many who have—she does her best to make sure she is doing a good job; but I also know many clinicians who really can't be bothered, who see themselves as the victims of a difficult system and weep all the way to the bank as they cash their annual salary of £150,000. Furthermore, what is a good job to a surgeon can be quite different from what it is to a patient: "the surgery was successful but the patient died". The patient might have reviewed the adequacy of the surgeon's performance as other than 'successful' if he'd lived.

If the NHS or any medical system is to become patient-centred, it has to mean making medical services about helping people become well long-term. How each clinician does that needs to be reviewed publicly. But it's not a case of using the ludicrous 5-star system of recent times or the current fad for measuring 'patient satisfaction'; it needs to be a thorough system that looks at all the variables that go into helping people get well. I've researched this for a number of years and it's a complex, scientific issue. It can be done and the public has an essential role in such a review. We need to be able to say it publicly when things are less than adequate, without fear of a lawsuit for libel. Nick Clegg's initiative is a very, very welcome step in the right direction. Let's hope he succeeds.

When medical professionalism makes you sick—and patient participation makes you well.

2010-12-28T10:02:00.002Z

Every month or so I get a copy of Buddhadharma, a magazine that re-connects me with my spiritual values and helps me both feel good and refocus on doing something positive for society. This week it is a reminder of the spirit of Christmas and a refreshing source of support in the times when the Tuke Institute's challenges form a seemingly impassable mountain. The current edition is about the historical oppression of women within Buddhism and how things have started to change since Buddhism developed a foothold in the West. This has allowed a less polluted form of religious practice to emerge from the tension between spiritual integrity and religious tradition, often returning to a more authentic spiritual practice that existed before religious 'professionals' and their vested interests developed.

It reminded me of the same problems in medicine between the professionalisation of Western male physicians, where they became the sole owners of the concept of medicine, and the fact that, for many thousands of years, medicine was defined instead by the needs of the ill person. It is no co-incidence that women were kept out of both religion and modern medicine for so long and that, in medicine, it took some strong women to re-introduce basic humanity into its practice, even though they had to call it by a different name: 'nursing'. But as nursing became professionalised (though still subordinate to male medicine), it too became heartless: one only has to read Denton Welch's "A Voice Through A Cloud" to remember what it used to be like with fierce and unkind nurses. While nursing has always been the most forward-looking of the medical professions and is far more in line today with what people need and require, medicine in all its forms struggles to remain humane as it becomes increasingly professionalised and distant from the reality of illness. Humane medicine is civilising and empathetic, it relates to the experience of illness, and thereby finds out what a particular person needs in order to get well. Inhumane medicine makes you sick, in all senses of the phrase.

The balkanisation of medicine into 'medicine proper' (i.e., what Western physicians provide) and 'ancillary' services, such as nursing, is still one of the greatest failings of modern medicine; it is also one of the biggest obstacles to focusing effectively on the needs of the ill. As a person with chronic illness myself, I define 'medicine' as whatever I need to get and remain well, and this is sometimes quite distinct from anything the most caring physician can provide. It is a pity that such a simple truth has been marginalised by the vested interests of providers, interests that are so woven into the fabric of society that it takes 'outsiders' to show where the problems lie; 'insiders' can't see it themselves, because they have no alternative perspective until they become so sick themselves they have to question what they know. The very fact that the ill are considered 'outsiders' in medicine identifies the core problem and if there is one over-arching rationale for the participation of 'outsiders' in medicine, it is to help 'insiders' remember their purpose. Otherwise, we get bureaucratic bean-counters causing multiple deaths (as at Stafford Hospital) or narcissistic clinicians causing multiple deaths (as at Bristol). Both have forgotten why they are there.

Over recent years, I have felt an increasing need to bridge this divide between providers and their purpose (patients)—not least because of the dreadful and inhumane 'care' I suffered myself as a patient in the NHS. It is the reason why I focused on getting other people like me—clinicians, scientists, and other providers who also have chronic illnesses themselves—to help find a way to bridge that divide through the work of the Tuke Institute; after all, we have to do this every day in our own lives and it helps us to not forget why we do what we do. Bridging this divide requires the active participation of patients, something that is already forcing medicine to change, but medical providers are fiercely resisting that change, protecting their turf from 'outsiders'—often in the name of professionalism. Again, they have forgotten why their professions exist in the first place. Medical professionals need 'outsiders' to remember why they are there and, just as women have helped Buddhism regain its authentic spiritual values in religious practice, so patients can help medicine regain its authentic humane values in professional practice. Only a medical professionalism imbued with a real understanding of illness will be able to help the ill get fully well.

Man cured of HIV? Possible but highly unlikely. Here's why:

2010-12-16T21:40:00.000Z

There has been a recent report of a man cured of HIV infection. I do hope it's true but, having seen the ups and downs of the decades of this pandemic and knowing the biology of the disease, I sincerely doubt it.

The article appeared in the scientific journal Blood (http://bit.ly/icF40a); the report is not available to the public despite the fact that the research was funded by public money. However, it's worth tracking down the report and the previous ones to which it refers (http://bit.ly/g9QwfU - in the New England Journal of Medicine—full text publicly available). In this report, a man was transplanted with stem cells following treatment for acute myeloid leukaemia—treatment for which included destroying his native immune system and bone marrow cells (where HIV lives). This outcome took several treatment attempts of chemotherapy and 'ablation' therapy until it was successful. The stem-cell transplant took hold and several years later, the man still has no detectable HIV in his blood-stream.

Nice. But there's a wrinkle. There are a couple of highly separated compartments in the body, one of which is the brain. In order for HIV to get into the brain in the first case, it needs to be actively transported there; it can't get there itself unless there's a tear in what's called the blood-brain barrier. The blood-brain barrier is normally very difficult to cross and only specialist cells can do it. Of the few cells that can cross this barrier (using a set of molecular keys) is one of the monocyte-macrophage type—which happens to be one that HIV infects and uses to piggy-back across that barrier into the brain. This is how we get HIV-associated cognitive disorders and 'dementia'. Having studied HIV-dementia and having grown bits of brain with HIV in the lab many years ago, it's an area of particular interest to me. Having HIV in my own brain makes it of even greater interest.

A significant proportion of people with HIV have the virus in the brain. This man may well have had it too—and still have it; he may be the only one who has it in the brain and not the rest of the body. He may stay HIV-negative (by blood-test) for the rest of his life yet still come down in due course with HIV-dementia. Or, of course, the virus may find a way to get back into the rest of the body too in due course.

All in all, this is an interesting and extremely important case-report—but it's not evidence of a 'cure'. I do wish people—especially non-scientists such as these physicians on this team—would be very, very careful about using that term. And I wish groups like the AIDS Policy Project would be more circumspect and less political in their awards (http://bit.ly/etmf1w). It doesn't help those of us who are actually living with the reality of the disease.

It's time we put people first

2010-12-10T13:14:00.003Z

Recently, I was asked to lead the response of the British Psychological Society to the Scottish Government's draft standards of services for people with HIV. The standards were interesting, confusing, and not a particular surprise. Mostly, they were about what the NHS thinks people with HIV need rather than being based on the experiences of having HIV. They also were far from "evidence-based" (excuse the jargon) in that they were primarily about what the NHS thought it might be able to provide and focused on treating the virus more than helping people get well. Really, they don't seem to know the difference. As such, it is difficult for us to call these standards.

Still, they did show an interesting nod towards behavioural and social issues. Now, when you realise that HIV is an epidemic caused by behaviour, fed by social inequalities, and affecting people even more than bodies, it's quite stunning that these standards still reflect the old, physician-centred model of services. An historical perspective is useful here: before 1996, when physicians had very little to offer, the HIV-affected community participated quite deeply in the services, which were about people. There were integrated physical, mental, and social services, albeit still within the rickety NH-framework, but they were very successful given the limit of what could be done at all. Nice of them to share the responsibility. After 1996, when effective drugs came in and made it possible for us to live a lot longer, the NHS as a whole reverted to physician-centred services, with ancillary staff (literally, 'handmaids' to physicians). Nice of them to take back control.

OK, everyone who had survived was deeply burned out and wanted to make the best of the good news. But the subsequent expansion in HIV-infection rates and related illnesses over the last 15 year have shown this reversion to a physician-centred model of practice to be unwise. Now, we have a whole new generation of people with HIV. Surely, patient-centred services are necessary to help people stay and/or get well? It's not the virus that suffers from chronic illnesses—particularly clinical depression, addictions, other (often sexual) infections, heart disease, diabetes, metabolic and kidney diseases, and cancers—it benefits from them. And, just like HIV, most of those diseases are related to either specific behaviours or their failure.

The Scottish draft standards brought this into full view. HIV is an infection transmitted by behaviour and—like every other chronic illness—has long-term physical, mental, and social consequences for those of us infected and for the people who support us. So, if publicly-funded medical services are hoping to create health, then they need behavioural medicine to be up there at the front. It's nothing more than what the scientific literature says, as my own research on this issue for the Tuke Institute shows. But how on earth does one prod a government to raise its eyes from such comfortably low aspirations and look, instead, to serving the public?

Hmmm.... quite. Hold that thought.

I’ve been prompted to start blogging....

2010-11-19T15:52:00.005Z

I’ve been prompted (read; prodded with sharp sticks) to start blogging, which is only slightly less dangerous to society than my writing a memoir. The idea of it is to talk about the things that I’m interested in and the work that I’m involved in, namely: HIV, medicine, and social justice.

My interest has always been HIV disease, since the first time in 1981 when I fell inexplicably ill. At that time, my Hamburg physician said “It’s sumsing viz your vite blut cells but not zat kissing illness”. Then my boyfriend, Terry Higgins, died from the same sort of thing. Having started up the Terrence Higgins Trust with an ever-changing group of others (notably Martyn Butler and Tony Whitehead), I decided I needed to become as expert as I could about the illness. There followed 14 years of training in psychiatry, neurology, and immunology at the end of which, to my disbelief, I was still alive. I was then a doctor in those fields, a scientist and clinician, and still very much a person with HIV. Shortly after that, I was diagnosed with AIDS and I had a stroke—the latter due to an inborn error in a brain-vessel and utterly unrelated to my having HIV—followed by brain-surgery, which then caused epilepsy. Following a number of years of rehabilitation, I’ve tried to stop collecting diseases since then.

It is almost thirty years since that first HIV-related illness and I have also lived in five countries, which has been an experience of contrasts as a patient, a clinician, and a scientist. Over this time, I’ve seen a huge number of things change in medicine—and a great deal that hasn’t. Most of the latter I can ascribe to either one of two things: a lack of awareness of what ill people need to get and stay well or, too often, self-centredness in those providing the services.

It is not easy knowing as much about your illness as your clinician and this fact separates the men from the boys when it comes to competent treatment. There are times that I’ve had to struggle to assert the validity of my illness-experience in the face of denial by providers and, while the evidence later showed me to be right, it was at great cost to me. I’ve learned a lot from these instances but the saddest thing is that, most often, the clinicians learned nothing and moved on to do exactly the same to someone else. Many community-based services, too, have ossified and become as self-serving as public-sector services.

So this blog is not going to be about me as such but about how I see things from my multiple perspectives. There is a lot of rhetoric today about ‘patient experience’, illness-narratives, public participation, etc, and there is some great research being done—but little gets into policy and even less creates any useful change in services. I’ve started up another organisation to try and change that too (the Tuke Institute). It’s still in its early days, but there’s one thing that I have not often lost in these past thirty years: hope.