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Articles tagged with: personal stories of people living with HIV


How can we kick neuropathy into the glossies?

Tuesday, 30 September 2014 Written by // Dave R Categories // Activism, Health, Treatment, Living with HIV, Opinion Pieces, Dave R

Dave R: Despite between a quarter and a third of people living with HIV ending up with neuropathy, it still draws blank stares from most people When will neuropathy become sexy enough to hit the headlines?

How can we kick neuropathy into the glossies?

I hate to be a kicker, I always long for peace but the wheel that does the squeaking is the one that gets the grease.”The Kicker’ Josh Billings 1818-1885

Apparently the figure of twenty million Americans alone with neuropathy isn’t enough to make it a Twitter Trending Topic, or a Facebook phenomenon. That’s maybe understandable when you think of the average age of social networkers but the fact remains that, one way or another we have to get neuropathy taken seriously as a major health problem.

In an ideal world you’d expect the doctors, medical authorities and drug companies to take the initiative. After all, with those statistics, there’s surely money and reputations to be made, but apart from a few serious neurology and diabetes conferences (where solutions are genuinely looked for), there’s nothing in the mainstream media that makes Joe the plumber sit up and take notice. Why are we missing the target?

What do we really need and what are we really asking for?

From the patient’s point of view we pretty much need universal understanding that what we’re suffering from is debilitating and life changing. We also need treatments that are effective and not necessarily ‘borrowed’ from other diseases. To achieve that, we need to persuade the drug companies that it’s worth investing research money in:

  • new studies designed to find ways of repairing nerve damage;
  • finding new ways of dealing with the pain and discomfort and
  •  identifying the true cause of someone’s neuropathy.

In those respects, our aims are probably the same as those of neurologists and specialists who deal with HIV, diabetes, cancer and all the other contributing diseases to neuropathy. Quite a lobby, you might think! Surely enough to stimulate the cogs and wheels of corporate medical science, but up until now, it hasn’t been enough; it’s still ‘Neuro...what?’

Time for patients to take matters into their own hands maybe: grab neuropathy by the short and curlies and make it the discussion of the day in every family home and medical boardroom in the land? Too aggressive? Maybe but thinking back; HIV wasn’t taken seriously, or viewed sympathetically and the fear wasn’t removed, until brave people got on their soap boxes and yelled and shouted until it was.

Now nobody is demanding that we take to the streets with neuropathy banners and placards outside city halls at this moment and it wouldn’t do much good anyway because we’d just be told to get in the ‘needy causes’ queue. However, in order to get effective treatment, we really need neuropathy research to advance more quickly than it does and in order to do that in the modern world, we have to give it an image attractive to the real powers that be; the media.

Advocacy is the word.

Wikipedia defines advocacy as:

...a political process by an individual or a large group which normally aims to influence public-policy and resource allocation decisions within political, economic, and social systems and institutions; it may be motivated from moral, ethical or faith principles or simply to protect an asset of interest. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or poll or the 'filing of friend of the court briefs'. Lobbying (often by lobby groups) is a form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics.

So we know where to begin.

To give credit where it’s due, within the neuropathy communities, a lot of great work has already been done.  The American Neuropathy Association for instance, has been untiringly active in this area since 1995 (although it is only recently that they have embraced HIV-related neuropathy into the fold) but this is a worldwide problem and patients and organisations in every country (if they exist) need to try to raise the awareness of the problems caused by neuropathy locally if possible.

Should we then concentrate on publicizing the plight of chronic pain sufferers, with the idea that chronic pain evokes more sympathy than the neuropathy that causes it? Or should we try to imprint the word ‘neuropathy’ onto every nation’s subconscious, thus prompting the question, ‘What is it?’ on everybody’s lips.

There are many (pretty dull) YouTube clips about neuropathy and websites, blogs and FaceBook pages too; yet the average person on the street still has little clue what it is, or how it makes people’s lives so miserable.

Do we perhaps need role-models? Of course we do but the number of ‘celebrities’ coming forward and declaring their neuropathy can be counted on the fingers of one hand (and statistically, there must be quite a few). You’d think there was a terrible stigma attached and you could maybe understand it if the only form of neuropathy was HIV-related but it’s not; diabetic neuropathy and other forms outnumber us almost everywhere.

So what’s the problem? Are even 20,000,000 Americans, too small a group to catch the eye of the world’s media? According to a Neuropathy Association summit meeting in December, 2010, as many as 8% of the world’s population has neuropathy and others claim that one in five people will get neuropathy before they die. More infohere. 

So if these figures are even near to being accurate, neuropathy can hardly be deemed a ‘minority’ illness and therefore undeserving of media attention.

So what can we do?

It’s a dog-eat-dog advertising and publicity world and neuropathy is up against much ‘sexier’ diseases with high-impact media images. Many will say, “Hold on a minute, it’s not a competition. You can’t make an ad campaign out of people’s suffering!” but unfortunately that’s exactly what it is and that’s exactly what we need to do!

It’s important to know precisely what it is we want and just as importantly, to know which targets are realistic and which are a waste of well-meaning energy.

To my mind, the aim must be to try to achieve some of the following:

  • To raise neuropathy to a level of understanding amongst the general population equivalent to say, ulcers, heart attacks, emphysema and eczema. These are randomly chosen health problems which most people have heard of and have some idea of how they affect people.
  • To raise neuropathy to a level of understanding amongst the drug companies where they can see potential profits in finding effective treatments and can compete with each other to be the first to be able to ‘repair’ nerve damage, thus increasing their own public profile. We could whistle in the wind and hope that drug companies will see this as a noble cause for the betterment of millions of people but we all know it doesn’t work that way. What’s in it for them is a far better approach.
  • To stimulate support networks amongst local government, health councils, social services and health groups associated with linked illnesses, so that home doctors and neurologists can immediately refer someone to a support group if necessary. There’s only so much the doctors can do and that can leave the patient feeling distinctly unloved!
  • To form alliances with other patient groups dealing with neuropathy; especially concerning diabetes, cancer treatment and alcoholism amongst others. Together we are a much more powerful lobbying group.
  • To aim for awareness of the problem at local authority and right up to national government level. After all, the bottom line is that the money has to come from the top and the competition for national resources in these difficult times is cut-throat. We need allies in the corridors of power.
  • Lastly, to stimulate understanding within the HIV community itself that there is a large group of people with HIV who have something else nasty to deal with. This could be promoted alongside education about other growing HIV-related problems like Hepatitis, Anal cancer and Dementia.

Achieving any one or all of these aims could transform the face of neuropathy treatment across the world but how do we realistically go about it?

Each person who reads this is an individual who (unless he or she is in government) has a pretty small voice in a democracy and possibly no voice in other political structures. We have to tailor our advocacy to what we can do as individuals. It’s easy to preach that this, that, or the other must be done but that’s much easier said than done, especially if you’re also suffering from neuropathy symptoms yourself. So if you have the energy and will-power to have a go, let’s look at what is possible.

There are various well-established means of attracting attention to your cause: letter writing, phone calls, emails, individual visits, group visits, becoming part of a patient coalition are just a few actions that individuals can take.

The question is, who do you address these appeals to? Sometimes it depends on who you know, or who someone you know knows! However, generally, the individual feels pretty helpless in the face of large bureaucratic organisations. Choosing one means of asking questions maybe the most we can expect from people, Just writing a letter to the local health authority, or ringing a local government official responsible for health, or emailing an organisation, is already a positive step.

Drug companies for instance, need to be taken to task regarding their neuropathy medication policies. Asking them what their position on neuropathy is and what they’re prepared to do to help neuropathy sufferers may not get a reply but you will have sown the seed in someone’s mind that there may be a problem.

Telling your own story or the story of someone you know can also be very powerful. Maybe that can be done by starting a blog, or joining together with others to start a blog. They’re free and very easy to set up. Before you know it, people you never imagined will be reading about neuropathy. Imagine that happening across your country and something really begins to happen!

If you can and are not afraid of the publicity, post a video on YouTube or Vimeo, or one of the other video hosts and go for viral! It has never been easier for individual people to spread information across the world and differences can be made. From little acorns, big oak trees grow!

The most immediate and effective target for our advocacy must be the media and while we have touched on personal blogs, websites and YouTube videos, getting the message onto TV, radio, or in the newspapers and magazines, remains the most effective way of reaching people. It is however, probably the most difficult for the individual to break into. Not that you shouldn’t try; the media is constantly looking for interesting stories and if you can add just a little drama to the story (twenty million Americans with neuropathy for instance!), you may just be asked to present your argument on air, on line or in print.

However, it’s much more likely that larger groups will gain media attention. If you can join, or organise a patient coalition, that will immediately attract attention. Otherwise, asking organisations that deal with problems arising from HIV, or diabetes, or any of the other contributing diseases what information or help they can offer regarding neuropathy, will again alert people to the problem. Option here.

Web communities are also excellent means of creating a ‘bigger voice’. Every forum with neuropathy as its topic has a large following and is full of heart-rending stories but we need to get the message across the whole spectrum of health forums and especially those dealing with HIV.

I’m a dinosaur; I hate Twitter and Facebook, as means of communication but I do realise that I’m in the minority and many people love them and are experts in promoting hot topics. Please, if you have neuropathy, see what you can do. If you can make one person aware, there’s a good chance that they in turn will pass the story on to others.

Advocate to your own ability and do what you can. More info here. Nobody can ask for more but if you remember that you’re representing millions of people across the world, maybe we can remove the ignorance about this growing disease and stimulate action in treating it.

Our disease may not carry a death sentence but for many, it is a life sentence and we owe it to ourselves to make sure we’re not ignored!

To conclude, this is one of those subjects where you can inadvertently, very easily tread on people’s toes. Thousands of hard-working people have years of experience with various forms of advocacy; sometimes achieving great success and sometimes banging their heads against the brick walls of ignorance. To those people I sincerely apologise if this post seems simplistic, naive, or unrealistic.