The False Hope Industry

Stargardt's disease is a degenerative genetic eye disorder. It is caused by a build up of a toxic metabolite called lipofuscin in the retinal pigment epithelium (the "nurse" layer of cells underneath the photoreceptors). This inhibits the eye’s ability to nourish photoreceptor cells and causes them to die. Stargardt’s usually leads to legal blindess – although patients retain some peripheral vision. It affects about 1 in 10,000 people.

Of the sudden decline in the eyesight of my six-year old self and the more recent declines in my early thirties there isn’t much to say. As it is with many cancers or diseases of the nervous system, my particular affliction just is what it is. There is something claustrophobic about incurable disease – as if you are one of those characters stuck in that room in Sartre’s play No Exit. Hoping for a way out is a bit like a drug. It might give a high in the short term, but you keep needing new sources of hope as the last one peters out.

It is tempting to believe that if you just prayed hard enough or travelled to that clinic in Mexico then the miracle might happen. You will wake up and the tumour will be gone. Or you will open your eyes and suddenly everything will be clear as it was in that one childhood memory.

To borrow a phrase from Christopher Hitchens’ lovely writing on cancer, "the citizens of Tumortown are forever assailed with cures, and rumours of cures." I am sure this problem is much more acute for people with terminal cancers and their families, but the same holds for most incurable conditions. A friend’s parents kept driving him to one charlatan after the other. I never asked him how he felt about it. I’m sure his parents meant well, but I’m thankful my parents didn’t take us on that rollercoaster.

When it comes to finding cures, hope is irrelevant. All there is, is the hard work of many thousands upon thousands of researchers and study volunteers. Whether they get lucky is often just that, luck. We’ve had so many leads in basic research for cures for this and that cancer and this or that muscle-wasting disease. So very few have lived up to the sensationalist headlines. Of course, some really life-changing cures and treatments do come along. HIV, the field I work in, has gone from a death sentence a mere 20 years back to being a chronic disease that can be managed with antiretroviral treatment. It is not a cure, but it is undoubtedly the kind of miracle many hoped for.

In March this year I was lucky enough to attend the Conference for Retroviruses and Opportunistic Infections (CROI) in Boston. Of the two major annual AIDS conferences it is certainly the more hardcore. Sitting in a packed lecture hall listening to reports of novel new approaches to HIV I was struck by the sheer magnitude of the combined push to extend human knowledge of a virus and its related afflictions. In his or her own way, every researcher was there plotting a way to better people’s lives – albeit at the behest of a greedy pharmaceutical company or not.

Though it will probably come too late to wipe away the smudges in my own vision, a combination of circumstances has meant that researchers are currently engaged in a similar, though much smaller, push to find treatments for Stargardt’s disease. First, doctors in California injected a cellular soup derived from embryonic stem cells into the eyes of a small number of people with the genetic defect. Elsewhere, a cutting edge trial is finally establishing safety of a gene therapy treatment for Stargardt’s disease. Both trials are scheduled to report in 2013.

Still, as I applaud the effort of these researchers and even as I’d sign up to take part in one of these trials at the drop of a hat, I also feel strangely indifferent to it all. Even writing about this at the suggestion of my Quackdown co-editor is already giving too much attention to matters that are probably better left in the periphery of my day-to-day existence.

By all means, the biological details of how my eyes struggle to clear lipofuscin is crucial knowledge to me. As with HIV, scientific understanding is essential to demystifying disease and coming to terms with it. I keep my study of Stargardt’s as cold and dispassionate as possible. If a cure comes, it comes. I just don’t have the time to sit around waiting for it. No matter what you read in the papers, cures or effective treatments don’t come around every day. Many newspapers, magazines and online publishers routinely take research findings out of context. They find angles where there really are none. In fact, if only research that was truly meaningful to the public was published there would be hardly any new research reported in the media.

Harmful as it is, the false hope industry as it exists in the media is not as harmful as the way in which quacks sell false hope in order to sell their products or to suit there own pseudo-scientific belief systems. I know from my own experience that the promise of a cure can resonate with that desperate need to be free of a condition – however dodgy the supposed cure may sound. Consciously or sub-consciously, most quacks know this and exploit it. From the HIVEX electromagnetic HIV treatment in Durban, to the nonsense of the Burzynski Clinic in Texas, the patterns are universal. Like flotsam from a previous age, these quacks wash up in their own backrooms or plush offices, naively misinterpret basic science and imagine themselves to be Gods.

My curiosity at these misguided men and women who believe they’ve figured it all out, and my fascination with how many people believe them, are certainly part of the reason why I write for quackdown. More importantly though, I know something of the desperation, vulnerability and claustrophobia of containing the incurable within your own body. I know how these feelings can be exploited and I know that they often are.