16 Dec 2010 09:40

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.

10 Dec 2010 01:14
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.  

19 Nov 2010 03:52
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.