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I Hate to Be a Kicker, or How to Get Neuropathy Into the Glossies?

By Dave R.

February 17, 2012

Internet links shown in these posts are designed to provide more detailed information if required.

"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, so many fearless people have stuck their heads above the parapet in the name of HIV-related issues over the years. Even 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 and during the National Neuropathy Week, May 14-18, their efforts will be redoubled but this is a worldwide problem and patients and organizations in every country (if they exist) need to try to raise the awareness locally, of the problems caused by neuropathy.

More Information: The Neuropathy Association: National Neuropathy Week 2010.

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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" into 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 Information: Number Crunching Neuropathy.

So if these figures are even near to being accurate, neuropathy can hardly be deemed a "minority" illness and therefore supposedly 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. 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 organizations.

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 organization, 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, online or in print.

However, it's much more likely that larger groups will gain media attention. If you can join, or organize a patient coalition, that will immediately attract attention. Otherwise, asking organizations 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.

More Information: Neuropathy Action Foundation

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 realize 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. 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 apologize if this post seems simplistic, naive, or unrealistic.

More Information: Advocacy Is a Neuropathy Power Tool.

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.

Send Dave an email.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy
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Reader Comments:

Comment by: Eugene Richardson (Fort Lauderdale, FL) Fri., May. 11, 2012 at 7:46 am EDT
Great article. The Neuropathy Support Network under the not for profit Network for Neuropathy Support, Inc. has been distributing the DVD "Coping with Chronic Neuropathy" FREE worldwide since its release in December 2010. With an endorsement from the Neuropathy Association Inc., and introduction from Thomas, Brannagan, MD the Medcial Adivsor to The Neuropathy Association, the DVD increases awareness, provides patient information, hope, coping skills, while supporting research. The supporting website at www.neuropathysupportnetwork.org provides factual medically reviewed and patient endorsed information on neuropathy from the patients point of view. Your article is right on target and the most difficult part to implement is to get the different organizations to work as a coalition! Each group thinks it is about THEM and not the neuropathy patient and this is frustrating. Every effort to get cooperation to date has been met with refusal with arrogance and this is very frustration as it seems the value is about 'money" for them and their work ... period. But I will continue the fight until the day I am not here.
LtCol Eugene B Richardson, USA Retired, professional counselor, Chronic Inflammatory Demeylinating Polyneuropathy (CIDP) and Autonomic Neuropathy patient from Agent Orange exposure in Vietnam fighting the disease for 43 years and advocating since 2000.
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Comment by: NeuraVite (Southern California) Sat., Feb. 18, 2012 at 8:00 am EST
As podiatrists with patients who deal with the debilitating effects of peripheral neuropathy on a daily basis, we stand strongly behind the idea of getting the word out there! This shouldn't be a "suffer in silence" condition and there are non-prescription, all-natural means of treating it, including NeuraVite. This is one of the reason's we include the hash tag # in front of our Neuropathy posts on Twitter. Education is important and we are all for getting the word out there. Thanks for the article.
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Comment by: Dr. John Hayes jr (Boston, Ma) Sat., Feb. 18, 2012 at 7:35 am EST
Dave, excellent article. I'm not sure if you've seen http://neuropathydr.com

We have professional articles written and published as well as one recently on HIV/AIDS peripheral neuropathy submitted for publication in a PT Journal.

Our book "Beating Neuropathy Taking Misery to Miracles in Just 5 Weeks" remains a bestseller.

We have multiple Facebook pages as well as Twitter NeuropathyDoc

I hear you loud and clear, I have been saying this for years which is why we now have over 50 treatment centers in the USA.

We are more than happy to share information. God Bless you and your work!

John
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Comment by: Anonymous Fri., Feb. 17, 2012 at 7:53 pm EST
I just wanted to let you know that I enjoy your blog posts and find them very informative.
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Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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