by Cris Kerr, Administrator & Community Health Researcher, ‘Case Health-Health Success Stories’ website, October 2005
My name is Cris Kerr and I’ve been administering the ‘Case Health – Health Success Stories’ website for the past four years. The site collects and shares success stories (cure or improved quality of life) attributed to any intervention. Though based in Brisbane, Australia, the site holds stories from all over the world and the service is provided as a community service, totally free of any charge.
A growing body of compelling anecdotal evidence
Through my website I became aware of a drug that has stopped the progression of Multiple Sclerosis and enhanced the quality of life of many Multiple Sclerosis (MS) sufferers. The drug is Naltrexone (also known as ReVia) and my ‘Health Success Stories’ database contains a growing body of compelling anecdotal evidence that it works, and; it works well – BUT, sufferers can’t get it.
The Naltrexone story is a powerful story that must be told and shared
Dr Bernard Bihari (USA), a long advocate and prescriber of Naltrexone has alleviated the symptoms and/or progression of MS sufferers by prescribing Low Doses of Naltrexone (LDN). His groundbreaking work, commenced in the mid 1980s, has resulted in a small but growing number of physicians prescribing Naltrexone to minimize both progression and symptoms of MS for their patients.
MS is not the only disease Dr Bihari has treated successfully with low doses of Naltrexone. LDN is cited as beneficial across a broad range of chronic diseases such as HIV/AIDS, lupus, Parkinson’s, Crohn’s disease, breast and other cancers, and even Fibromyalgia. If you’re wondering how these diseases are linked look no further than an errant immune system.
Due to the wonder that is the Internet, word is spreading. A maiden conference dedicated to LDN was held in New York earlier this year, with a second planned for 2006.
MS sufferers whose symptoms or progression have been alleviated by treatment with LDN have formed support groups and are dedicated to spreading the word. They’re striving to help fellow MS sufferers via information-sharing, emotional support, and fund-raising for clinical trials.
Why are Clinical Trials important?
At this time Naltrexone is only ‘officially’ approved as a treatment for alcohol or drug dependence, at doses much higher (around 50mg) than the very low doses (up to 4.5mg) prescribed for the management of MS or other diseases.
Naltrexone has not achieved mainstream acceptance as a treatment option for MS due to absence of clinical trial data. Whilst a handful of doctors will prescribe LDN for MS (if pressed), most are too cautious to prescribe a treatment they perceive as unproven clinically.
Clinical trials answer the ‘who, what, why, where, how, and when’ questions that must be answered to establish patient profile, efficacy, optimum dose, safety, etc. Clinical trials establish evidence of successful, safe outcomes or unsuccessful, unsafe outcomes. Doctors therefore, quite rightly, base treatment decisions on clinical trials because this is the safest system to follow, and patients wouldn’t want it any other way.
But, where does that leave the promise of Naltrexone?
Health success stories written by patients and attributed to LDN are growing exponentially.
A large body of stories from MS sufferers who’ve improved or halted progression of their disease after taking LDN are building a compelling case, but these stories represent only one facet of evidence. Health success stories alone don’t provide sufficient evidence for most doctors to prescribe LDN.
A large body of health success stories does, however; provide sufficient evidence to advocate a clinical trial.
Clinical trials cost money and are typically initiated or sponsored by those who expect to recoup the cost outlaid for the trial by commercializing its successful results. That’s business and that’s how it should be. If an organisation is prepared to fund the very high cost of research, development, and clinical trials then they’re entitled to view the costs as an investment that will turn a profit.
Naltrexone has long passed its patent protection period. Drugs outside of patent protection are classed as ‘generic’ or ‘orphan’ drugs because they no longer have a sponsor. A clinical trial therefore, does not present an attractive commercial proposition for those sponsoring organisations that have traditionally initiated clinical trials – because they wouldn’t gain exclusive rights (and subsequent profits) from a successful outcome.
What’s wrong with this ‘system’?
The driving force behind Research, Development, and Clinical Trials is commercial. There’s no big profit to be made from a clinical trial of a ‘generic’ or ‘orphan’ drug such as Naltrexone regardless of the promise it holds, so nothing happens.
How did we discover Naltrexone holds such promise?
Via his practice Dr Bernard Bihari has been trialling Naltrexone since the mid 80s, resulting in a growing body of health success stories linked to low doses of Naltrexone.
Testimonials appear on core LDN supporter sites: In the USA, Dr David Gluck, a childhood friend of Dr Bihari and LDN advocate, manages the website www.lowdosenaltrexone.org and it’s sub-site www.ldninfo.org with the help of his son. An LDN for MS Research Fund, sponsored by the Accelerated Cure Project for MS and initiated by four individuals with a keen interest in LDN is publicised on this site. You’ll also find the Foundation for Integrative Research; now known as the Foundation For Immunologic Research (FFIR); founded in 1989 by Bernard Bihari, MD and two colleagues to raise trial funds for the broader range of LDN’s promising applications.
In the UK, LDN Research Trust was founded by Linda Elsegood, herself an MS sufferer who takes LDN. Linda’s monthly newsletter contains LDN testimonials. The patients who’ve been helped by LDN are doing what they can to raise awareness and funds for clinical trials … the hard way.
You can’t help but be impressed when you see MS sufferers raising funds and contributing to support groups in the interest of helping other MS sufferers.
Those that could be helped are not being helped
Whilst there’s growing anecdotal evidence that LDN could be the most effective and economic treatment option in the management of MS (for both the patient and the health system), the absence of clinical trial data means the majority of practitioners are still not prescribing Naltrexone. Those that could be helped are not being helped.
What‘s Disturbing about this Picture of Health?
When you read LDN stories on my site or others I’ve mentioned here; the first thing you’ll notice is a consistent thread of optimism running through this ever-growing body of health successes:
‘ … I have been on LDN for a little over 7 months now and it has given me a lot of my life back. For the first time in many years, the progression of disability has stopped. … ‘
‘ … I have had NO new symptoms and NO further progression since starting LDN six years ago. I still drive and do all my own shopping, cleaning, etc. I feel certain, had I not been on LDN, I would not be as active as I am, nor as mobile. I wish every MSer had the chance to try LDN to see if they are one of the ones who would benefit. … ‘
When you read LDN stories, the second thing you’ll notice is the extraordinary lengths MS sufferers are forced to go to try Naltrexone. MS is a debilitating condition with multiple adverse symptoms. People with MS are already suffering. You can’t help becoming indignant at the injustice:
‘ … I phoned the neuro … to see if she would give me the Low Dose Naltrexone (LDN) treatment. She had never heard about it … she was so excited about this … she had to clear it with the legal dept … A week later she phoned to tell me the lawyers said no! … My health was being decided by a group of lawyers!! … September 4, 2005: I am happy to report a small but significant improvement. Last night for the first time in years I was able to lift my left foot and take a couple of heal to toe steps… instead of dragging my foot or walking toe to heal. … ‘
Where’s the official body that acts on behalf of patients?
Research, drug development, and clinical trials are commercially-driven by sponsors. That’s okay, but there’s no recognized body that can officially step up to the plate to speak and act on behalf of patients.
I know this because I’ve tried, without success, to find an authority that is sanctioned to do so.
The present system is unjust
The present system is unjust. It’s inequitable. It doesn’t place sufficient value on patient health success stories. It doesn’t place sufficient value on advocating for the patient. It doesn’t place sufficient value on patient-driven research or clinical trials. If it did, there would be a body sanctioned to speak and act on a promising body of testimonials.
How many stories similar to the LDN story are out there? We don’t know, because they haven’t all been collected, stored, and shared. That makes me feel uneasy and should make you feel uneasy.
A single health success story doesn’t register on the public health radar. It is not considered evidence. A growing volume of related health success stories, however; can build a compelling body of evidence that can no longer be ignored.
The collective LDN story is quickly becoming an excellent example of the power of numbers. The collective is greater than the single. Whilst the evidence remains spread far and wide it does not hold weight. It cannot be measured and it cannot help build a compelling case.
Governments need to acknowledge the value of patient testimony
The collective has a louder voice. Collectively, LDN health success stories provide sufficient evidence to advocate a clinical trial; the results of which could help many other sufferers.
The collective LDN story is also an excellent example of why ‘the system’ needs to change, why we need to rebalance the scales and give more weight and credibility to patient testimony. We need an organisation chartered to act on this type of evidence; an organisation that values patient testimony and can make recommendations (without prejudice) on behalf of patients from all corners of the globe.
Supporting data for this essay is in the form of untested patient anecdotes of health success. Whilst I firmly believe there is value in what I do, I am but an individual. I do not have the resources to validate patient anecdotes or recommend action.
Governments throughout the world could prove they value and give credence to patient testimony by implementing official bodies and processes chartered to act on compelling evidence in the form of health success stories.
Reference Sites:
(1) ‘Case Health – Health Success Stories’ website – casehealth.com.au & casehealth.com
(2) LDN Research Trust, UK – ldnresearchtrust.org
(3) Low Dose Naltrexone Org & LDN for MS Research Fund – lowdosenaltrexone.org
(4) LDN Forum, Germany – f27.parsimony.net/forum67727
(5) LDN Support Group – health.groups.yahoo.com/group/lowdosenaltrexone
(6) LDN New York Conference – ldninfo.org
About the author
Cris Kerr created the ‘Case Health – Health Success Stories’ community website in 2001. The website collects and shares health success stories (cure or improved quality of life) attributed to any treatment.
Stories are added to an online database with keywords so visitors can search the database by symptom, condition, or treatment. Though based in Australia, the site holds stories and selected research articles from all over the world and the service is provided totally free of any charge.
Evidence-based medicine seeks to make successful outcomes sustainable and repeatable by first recording evidence of successful outcomes, then sharing this evidence with others to enhance the number of successful outcomes.
Cris believes the patient is best-placed to attest health success. “Health systems throughout the world have long overlooked patient testimony. I advocate the value of health success stories in the public’s interest, and to promote the need for a more equitable health system.”
“Governments throughout the world could prove they value and give credence to patient testimony by implementing official bodies and processes chartered to act on compelling evidence in the form of health success stories.”
Permission to Republish/Reproduce
© Cris Kerr, ‘Case Health – Health Success Stories’ website — This notation grants Permission to Republish/Reproduce the complete article, as is, as it appears here on Scienceblog.com, on provision nothing is changed or excluded with regard to format and content (from title/header through to and including references, author, and this closing copyright notation).