Health for humans!: MS is now a Public Health Concern

'via Blog this'

Last night on ABC TV [national, free to air, Australia], I saw an interview with a woman who claimed she had been cured of MS by a controversial surgical procedure to the blood vessels draining the spine and brain. I pricked up my ears as I had never heard anything on the topic of CCSVI [Chronic Cerebrospinal Venous Insufficiency]. A neurologist explained that an Italian, Doctor Paolo Zamboni, had discovered that the veins in the neck of MS sufferers were not big enough for the volume of blood coming from the brain, so that back pressure built up, injuring nerves. I assume this guy has done blood flow studies to support this idea of insufficiency in MS vs all clear in non-sufferers- I don't know. The transcript of the interview with various doctors and sufferers is available at: http://www.abc.net.au/7.30/content/2011/s3399100.htm

This sounds reasonable because MS is a progressive condition where muscles throughout the body become weaker due to deterioration in the nerves which carry messages from the brain and spine. There are many theories on why the nerves become damaged, but no one has proven any one cause for all MS people. Some alternatives have included stray measles virus (just as poliomyelitis virus left over from childhood infection can produce post-polio syndrome in adults); toxic chemicals in the environment breaking down nerve coverings; vitamin and nutritional imbalances or insufficiency or above-normal need; damage from leached metals from amalgam dental fillings and good old genetic inheritance.

Apparently a Newcastle [NSW, Australia] general medical practitioner [not a neurology specialist], has been assessing blood flow in MS patients' necks and referring them for stenting or balloon angioplasty procedures to widen the channels inside veins carrying blood back to the heart. Dr Paul Thibault claims that two thirds of people referred have had significant improvement in their muscle function, including the woman on the program [ who has been able to go on a vigorous overseas holiday.

Quote:

KERRI CASSIDY: I actually went on an overseas holiday and I walked halfway around Europe for three weeks. I couldn't believe it that I really didn't think I'd ever be able to do that.

She looked and sounded really good compared with footage of her before the procedure, so I did a little exploration on the Internet.

First, I was quite surprised to see that someone had won a medical award for clinical and research contributions to Multiple Sclerosis because I had thought MS was only a problem suffered by very few people and that the cause was unknown or highly disputed. More surprisingly, it wasn't Dr Thibault from Newcastle, but a Professor Bill Carroll from Perth!

The award announcement says:

"Professor William (Bill) Carroll wins the 2011 John Studdy Award
John Studdy, Multiple Sclerosis Australia (MSA) and Multiple Sclerosis Research Australia (MSRA) would like to congratulate Prof William Carroll on being awarded the prestigious John Studdy Award.
The John Studdy Award is given annually to an individual in recognition of their outstanding,
consistent and selfless provision of meritorious service to people with MS.
... In addition to being one of the country’s most eminent neurologists, Bill performs a
leadership role throughout the world...
...Prof Carroll made a significant contribution in promoting ... and helping to subsequently
establish Multiple Sclerosis Research Australia (MSRA)..."

At various times I heard that there were some promising trials of drugs for MS in Australia, but assumed these measures were supportive but not curative. The national prescribing service [PBS] had approved some new drugs which I understood were very expensive, under their provisions to fund a certain number of treatments for "rare" conditions where the economics of private use were impossibly restrictive. Two people I know personally are taking some of these new drugs and they've told me they are feeling better and can do things they couldn't previously, eg. stand up in the kitchen and prepare food, rather than half-heartedly chopping up the lettuce on a wheelchair tray. However, neither has taken a walking tour around Europe!

The PBS started subsidising oral Gilenya (fingolimod) on 1st September, 2011, bringing the cost of using it down from X to $34 per script. Because this can be taken via the mouth, it is far more convenient than other drugs preceding it, such as injections of Interferon Beta. The latter often caused reactions at the needle site and flu-like symptoms. One friend of mine complained of feeling as though she was getting the flu and having to use her asthma inhaler more, but thought she had improved her muscle strength in her arms for using her wheelchair.

When Interferon was first tried in Australia I can remember it cost a lot- something like $1200 to $2 000 per month, which was not affordable for most people. When the PBS adopted Interferon under their subsidised program, it reduced to between $30 and $80 per month, depending on changing doses in line with improvement/deterioration. The new Gilenya should now be $34 per prescription filled, like any other medication, eg. Ventolin asthma spray [2-pack].

As the ABC program revealed, the surgical procedure to widen the blood vessels in the neck needs to be subjected to the same vigorous trials as the new drugs have been through, to make sure it works for the majority of people with MS. The procedure is moderately dangerous and there have been a few deaths, so it is more than a simple experience with guaranteed good results. Even when performed well, only 2/3 of patients report improvement, so the costs must be considered in proportion to the number of people likely to benefit [this is where Public Health gets into the act].

The MS Society lobbyists and individuals in the community do not fully understand what a dilemma their requests to surgeons create. Many with MS want the procedure right now, before their function deteriorates or before the disease progresses too far, but this is fraught with medical and economic dangers. Economically, since so many requested the procedure when it was subsidised under Medicare, people with other more common conditions (such as blocked veins in the legs or arms) were being pushed further down waiting lists by the perceived urgency of the CCSVI for the MS patients. Surgeons became concerned [and tired from long operating hours] that the Medicare system was becoming "unfair" because more people with rare conditions were receiving procedures than those with common conditions with PROVEN treatments.

Thus, the relevant government authorities have withdrawn support for CCSVI as an MS treatment until good trials have shown that it benefits a significant majority, just as the procedures for blocked veins in the legs do for their sufferers. With leg vein clearing or bypass people gain a lot of function [eg. they can walk again, maybe work], deaths associated with it are very rare, the danger is not high compared with operations on neck veins and the costs per patient are reasonable given the good results achieved.

At this stage I don't feel confident to summarise all the factors we should consider when assessing the "fairness" of public health spending on Multiple Sclerosis, but there are some good articles on which you can base your own assessment:

Benchmarks of fairness:

http://www.who.int/bulletin/archives/78(6)740.pdf

Justice & fairness in Public Health:

http://plato.stanford.edu/entries/publichealth-ethics/#JusFaiPubHea

In the UK a subsidised drug for MS seems to make people worse than no treatment at all. Where's the fairness?:

http://pharmexec.findpharma.com/pharmexec/Europe+Features/Fairness-Risk-Sharing-and-the-European-Price-Cuts/ArticleStandard/Article/detail/676558

A discussion of fairness and provision of subsidies for hyper-expensive treatments:

http://www.nuffieldbioethics.org/sites/default/files/files/Hyper_expensive_treatments_background_paper.pdf

"...Why... does our nation’s health stay bad, even in some areas get worse, and the poor still die younger than the rich?":

http://www.sochealth.co.uk/news/Withoutwalls.html

For summaries of information about MS, read:

Australia; The MS Society: http://www.msaustralia.org.au/aboutms-moreinformation.asp