Tuesday, 16 October 2012

I wrote this recently for a local charity HIV newsletter. No idea if it wil be published there so I thought I may as well publish it here. If I have got anything wrong, please do not hesitate to let me know?

A Functional Cure for HIV - is this now a possibility? My view.

When I was diagnosed about 5 years ago the possibility of any type of  cure for HIV seemed so remote, that as far as I was concerned at 54 it was not something I could not afford to spend time waiting for;  I had and still do have a life to live.
However, while I still think if it comes it may well be too late for me there have since been some developments recently that make it a possibility, if not for me at my age of nearly 60, at least for some currently living with HIV and those in the future.

The Berlin Patient
The renewed hope that this could be a possibility began with  the ‘cure’ of Timothy Ray Brown,
http://timothyrbrown.com/  know as ‘the Berlin Patient’

Timothy is an American man in his mid 40s who was living with HIV but who also developed leukaemia. Due to this he needed and was given a full bone marrow transplant in Berlin in 2007, for leukaemia, not HIV.

However the specialist, Dr. Huetter, who treated him decided to search for a bone marrow donor who carried the CCR5 receptor mutation. In laypersons terms this is a genetic mutation only present in about 1% of people and then only in Caucasians that means that these people do not carry the CCR5 receptor which allows the HIV virus to attach to the T-cell and subsequently infect the cell.

Thus People without CCR5 appeared resistant to HIV infections, often known as slow or non progressors. However as this is not the only mechanism by which HIV infects and replicates, having this mutation does not in all prevent HIV infection in all, but in most it enables the person to control it without medications, or in the case of slow progressors to control it for many years.

Timothy was given a transplant with donor cells from someone with this mutation, sadly the first time it did not work to cure his leukaemia, so he had to undergo the whole process again in February 2008.

This time it worked, but it also seemed to cure him of HIV! Five years later he has no leukaemia but also has not had to go back on HIV medications, and while some research, but not all, has shown he may have fragments of HIV genetic material in his body, he has no functioning HIV. This is remarkable and true and Timothy remains free of replicating HIV and no longer has to take HIV medications.

 I have it partly from the horse’s mouth as I ‘talk’ to Timothy over the internet as we both belong to several HIV discussion and support groups online. But I will not pretend to know him well, just that I have talked to him and know thse who have met him in person.

What is a functional cure for HIV?

This not a full ‘cure’ where HIV is fully eradicated from the body and many leading medical scientists do not think this is possible once infected. However if a person who lives with HIV can stop medications, there is a minimal amount of HIV remaining deep in their body,  but it is undetectable in blood tests and  it does not cause illness and it cannot be transmitted to anyone else, then this is a functional cure.

Timothy’s experience was truly a milestone in HIV research and inspired or re-fired the search for a cure as it pointed to a way it may be possible. It may be thought that:

‘ scientists and drug companies have always been on an all-out hunt for a cure for Aids. Not so. The virus is so elusive and smart that for decades now, experts have hardly dared dream of eliminating it. Most of the effort has gone instead into treatment which keeps it under control in the body and vaccines to stop it getting a hold in the first place. ‘



But scientists due to this breakthrough decided the time had now come to research and cure as the best way of ending HIV as an epidemic. As vaccines are still in their infancy and the cost, both financial and in terms of logistics, of treating everyone, worldwide is proving too high.


Scientists from the International Aids Society, including Françoise Barré-Sinoussi, the Nobel prize laureate who was the co-discoverer of the human immunodeficiency virus (HIV) is one of the prime movers in this search for a functional cure.

This search has gained further momentum since two more men who had bone marrow transplants no longer have detectable HIV in their blood cells.
 The remarkable thing is that these patients DID NOT have donors that carried the CCR5 receptor mutation!
It was expected that HIV would temporarily not be found in their plasma, but the surprise is it is not to be found, approximately two years on, in their cells either?

The key factor in their treatment seems to be is these patients, unlike Timothy Ray Brown,  did not stop their HIV medications while undergoing the transplants.

‘It suggests that under the cover of anti-retroviral therapy, the cells that repopulated the patient’s immune system appear to be protected from becoming re-infected with HIV.”

These findings were presented to the 2012 AIDs conference in Washington DC.

What direction is research towards a functional cure currently going?

Obviously the drastic measure of a full bone marrow transplant is not feasible for all or even for a fraction of those that now live with HIV.
Many do not survive bone marrow transplant which is a very gruelling and invasive procedure.

 One that only a few are healthy enough to undertake, of course very expensive, is beyond the medical capabilities of health care in some countries and will only be done anyway if a person has other reasons such as Leukaemia to undertake this.

A bone marrow transplant also can have lifelong consequences in itself.

Having spoken to Timothy Ray Brown briefly over the internet and those who have met and know him personally I am very much aware that his having undergone this procedure, and twice, has affected his health and quality of life, in ways unrelated to HIV. He may be cured of HIV and Leukaemia but he will always have the physical and emotions scars of his experiences.

But due to the knowledge gained by what he went through and these remarkable discoveries scientists now feel there is a possibility of using far less costly and invasive gene therapy and/or stem cell transplants to alter HIV patients immune systems to free them of HIV to the extent that they no longer need to take medications to control it.

It is in this direction that current research into a functional cure for HIV is now concentrating upon.
This work is in its very early stages but scientists at the Fred Hutchinson Cancer Research Center are trying to perform stem cell transplants with cells that have been genetically modified to be resistant to HIV, much like the cells that the Berlin patient received.

Another earlier and interesting development in France that some scientists think can be linked in with this stem cell research and combined somehow together is that a small group of patients were able to stop taking HIV medications without resurgence of the virus in their bodies.

These patients were given antiretroviral drugs very soon after becoming infected with HIV and not after their CDF4 cells dropped below 350 which is the more usual management of HIV. They remained on ARVs for three years and stopped without any rise in the levels of HIV in their bodies. They have all remained well with very low levels of HIV for an average of 7 years. This is also further evidence that a functional cure can be achieved.
Yet another strand to this new research towards a cure is a study by David Margolis and colleagues at the University of Carolina, published in Nature, appears to show that it is possible to reach the low levels of virus that "hide" in cells and have never been susceptible to treatment, using a dose of a drug that inhibits an enzyme involved in "silencing" HIV.

It is hoped that combining this research, flushing out dormant HIV virus lying in wait in the brain and spinal cord despite ARV treatment, early but temporary treatment with ARVs and combining with minimally invasive stem cell transplants; with more research, a functional cure for HIV could now be within reach?

What does this mean for us?

I am not of course medically trained and so all I can do is outline in laypersons terms what I have learned about the direction of this research from talking to those I know on the internet and following the developments and research as well as I am able. If I do not get this completely ‘right; anyone reading this is free to research this themselves and may have more medical/scientific knowledge than me and be able to understand it better.

However what is very apparent to me, is after a period of hiatus, whereby research for a cure of any kind for HIV had been all but abandoned in favour of possible vaccines, PeP Post Exposure Prophylaxis) and increasingly more effective HIV medications, a new energy, resources and of course funding is now being put into this area of HIV research; the search for a functional cure.

I am still not ‘holding my breath’ that a cure will come within my lifetime, or while I am still healthy enough to undergo it, as all of this research is in very early days. However I am more hopeful now that those who are younger than me and those who come after me may have a chance of at least a functional cure and HIV will one day become as many other STIs that were in the past incurable and in fact devastating to many communities.

Such as Syphilis, once a lifetime condition and killed many of those that had it after much suffering but is now thankfully curable and therefore few who contract it even bother to talk about it and certainly there are few support groups or, need for support or even any real fear or concern amongst those who pick it up?

It is therefore my hope that HIV will one day become as now is Syphilis and some other STIs now are. A STI to be avoided at all costs but if tested and diagnosed swiftly, a permanent, if only function cure, can be achieved for the majority before any real physical harm is caused. And due to this HIV will no longer be of the epidemic proportions it currently is worldwide and cause such devastation to individuals, communities and whole countries.

Timothy Ray Brown recently launched the ‘Timothy Brown Foundation’
to raise funds for HIV cure.

Veritee Reed Hall
October 2012

Timothy Ray Brown
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