A few weeks ago while on a train returning from a funding meeting the fable of ‘The boy who cried “Wolf”‘ jumped into my head.
The meeting hadn’t gone too well, funding for the counselling charity I help run was being cut because apparently “Depression isn’t really big in the public eye right now”. Apparently, just because people weren’t looking it means the problem no longer matters, it is the equivalent of putting your fingers in your ears, closing your eyes and hollering “La, la, la, I can’t hear you!”…
The fact is that funding is affected by the stories we see in the news, if something is regularly cropping up in the papers or on TV or radio, it remains high in public perception and people are more like to think “We really must do something about water for Africa/the elderly/cancer”.
There is however a flip side, from time to time stories emerge of a cure, be it a new drug, a new treatment or in the case of South Africa’s Health Minister; lemon, beetroot and garlic which to my mind is lovely for a salad but bugger all use for anything else.
My issue is not with people working desperately hard to find hope in a cure, my issue stems from the fact that, last year at a conference on charitable funding I discussed funding for HIV research with a woman and was told that, “people don’t want to put money in to HIV as the feeling is that a cure is already so close, why give it to HIV when other illnesses are so far from a cure?”
To be honest, I can see her point, people with HIV and on meds can now live long, happy, healthy and unhindered lives, but this doesn’t mean we are close to a cure.
The reality is that, as yet only one adult is currently believed to have been cured of HIV.
In 2007, Timothy Ray Brown received a bone marrow transplant from a donor with a rare genetic mutation that resists HIV. He has shown no signs of infection for more than five years.
Talks of cures in a baby girl were dashed only weeks ago when a child believed to have been cured who then vanished reemerged and tested positive.
A second child with HIV was given early treatment just hours after birth in Los Angeles in April 2013.
Subsequent tests indicate she completely cleared the virus, but that child also received ongoing treatment so we will have to wait and see if and when, without treatment, the virus really has gone.
The truth is that medicine is a tricky process, particularly with something as pernicious and devious as HIV which is shown to hide, undetected for extended periods like a spy in the den in reservoirs in bone marrow, the brain and the gut.
Medicine through time has evolved, things which were once seen as ‘cures’ are now shown to be quite the opposite, we need only look at the skulls of those who underwent the process of trepanning in an attempt to cure epileptic seizures, migraines, and mental disorders – as someone who has suffered depression I can say with some confidence that I don’t know how my depressive tendency is going to be abated by having my skull drilled into. Then, moving forward in time we have Elizabeth the first, who, in an attempt to cover up her smallpox scars applied ceruse, a cosmetic made of white lead and vinegar to her face which when combined with the moisture in the skin formed acids that slowly ate it away.
Moving further forward in time, tapeworms were recommended as a weight loss treatment. During the late 19th and 20th centuries the inhalation of fumes from burning tobacco was a suggested therapy for asthma. In the late 1800’s lobotomies were used to help cure homosexuality. In the 1950’s and 60’s LSD was trialled as a treatment for mental illness; radium, a highly dangerous radioactive element was once lauded as a treatment for diabetes; Heroin was used to treat the common cold…
The first known and identified case of HIV in a human was around 1959, so perhaps, given that we are still in medical terms at least, early on in what we know of the virus, we should accept that great work has been done in turning a death sentence into a chronic and yet manageable illness with the aid of medication but that we may still be a very long way from a cure.
My question then is this; how do we balance the need to keep HIV in the news to maintain an awareness and educate people on how to keep safe while not undermining the whole campaign by jumping on every potential cure that comes along?
I think the news media has a part to play; by pushing stories of cures they are drawing attention away from the fact that, in truth, an actual cure is still a long way away, to move forward, we must accept that, in reality, there is an awful lot we don’t know and turn out focus instead towards education, prevention and support.
Steve Cummins (@SteveoftheMarch on Twitter)