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

USA; NINDS: http://www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm

Australia: From science journalist Michael Slezak. http://www.smh.com.au/world/science/the-facebook-treatment-for-ms-20110330-1cgfi.html

There won't be a cure for autism

I came upon an article in the Huffington Post about Dr Mark Hyman's account of a child who seemed to have been "cured" of his childhood autism: "Autism Research: Breakthrough Discovery on the Causes of Autism". (December 11, 2010 11:37 AM). Dr Hyman attributed the child's "cure" to intense nutritional intervention aimed at correcting gut flora and metabolic functions concerning absorption. In making this connection, he referred to this exploratory research by Dr Cecilia Giulivi and colleagues of University of California, Davis.
I note that it is titled by the authors as a "Preliminary Communication" only and was not meant to be the final answer to any specific problem.
The paper is about "Mitochondrial Dysfunction in Autism", which means it's about how the cells of the body process energy or nutrients which are absorbed from the blood, after they enter the body via the gut. Dr Giulivi and colleagues did a laboratory experiment with some white blood cells belonging to autistic and normally developing children- they didn't use their brain cells. In autism research the processes that happen in white blood cells are used as an analog or model of how brain cells work. So their research is NOT on autistic children who are present in the lab, and is only about cells, not the whole living, breathing child. You should note that none of the authors work in a clinic or school for autistic children, so they are certainly not claiming they have even the beginnings of a cure. Their basic research conclusion is "In this exploratory study, children with autism were more likely to have mitochondrial dysfunction, mtDNA overreplication, and mtDNA deletions than typically developing children."

Please, dear readers and parents, don't put too much hope on this piece of research. There has been 50 years or more research on possible metabolic influences on autism- I was involved in some myself on serotonin/dopamine metabolism.

My own conclusion from the research is firstly that I am not very confident white blood cell metabolism is a very good representative of the areas of the brain I believe may be damaged pre-natally in autism spectrum disorders. Also, I imagine that the damage to the developing brain occurs to varying degrees and reaches different projections of nerve pathways in each child's brain, interacting with the rest of their potential for brain development, making it very unlikely that any one "treatment" or combination of strategies could ameliorate autistic thought and behaviour.

The appealing little boy featured in Dr Hyman's video seems rather normal and delightful and he also resembles several children I have interacted with who were similarly autistic when they were toddlers. As several people commented on the Hyman post, brain development reaches a certain level of maturity around 6 years old and kids become able to learn in class groups rather than alone or one-to-one. After this time lots of connections are possible between areas of the brain, but hardly any more new cortical cells develop or migrate. I think this little guy was rather bright originally and was able to benefit from his brain maturation plus good therapy.

Some high-functioning autistic children learn the rules, or how to simulate the rules, of normal social interactions and communication during the early school years, particularly if they have had attentional training and helpful parents. I remember a youngster whom I used to collect from his home to travel to the Flinders Medical Centre laboratory where we asked him to do some attention-grabbing tasks while recording his EEG/brain waves. He was a nice, quiet young boy (around 10 to 11 years old) and would talk during our journey if I spoke to him. He had very few twitchy movements or strange habits and could have been taken for "normal" by anyone we met. However, until he was about 8 he was the weirdest kid his parents had ever met! His habits, noises, bizarre reactions to people and situations had held the household to ransom since he was about 8 months old and became mobile! He had received a lot of individual speech, cognitive training and behavioural therapy so he could attend a mainstream school, because he could read and count at age level. His brain activity during the tasks was very similar to the other autistic people we tested, and was unlike that of the "normal" kids we had matched to them on several criteria. I'm sure Dr Hyman would have considered him "cured" given his everyday behaviour, just as his teachers did; his mum could still see his little quirks.

If you're interested in the idea of pre-natal brain development problems as an explanation for different degrees of autism, have a look at some early work from 1982 and some much more recent work in Italy which recaps the same theme, but with greater detail.

I love the work done by Simon Baron-Cohen on "theory of mind" and autism. While I agree with it up to a point as I can see that most autistic people behave as though they have no idea how the world appears from my point of view. However, my own pet theory is that the brains of autistic people are damaged sufficiently to leave them with a deficit in understanding what is important to attend to in the world, in order to function and survive. I call this a problem with "salience"- I think there is something wrong with the connections amongst the parts of their brains responsible for visualising movements and relating what they can see others doing, to their own body in motion. To me they seem as though they don't get the idea that speech is for communicating and that there is a lot of information in other people's faces that they should be using to decipher what happens. It's as though a basic biological connectedness is missing or damaged, so that they don't really "get it" the same way as ordinary people. They experience the world in different ways to the rest of us- it is quite difficult for us to explain to anyone how WE experience the world (we take it for granted; it's natural)- so how can we expect them to convey to us how THEY experience it? A super BIG ASK! All we can do is try to teach them to behave and reason about things like the rest of us so they and their families can have a calmer time.

There is a lot of research and therapy development at the Autism Research Centre in London, UK, which has a whole website devoted to it.

NB. It might be a little hard to include this as a "public health" post, but to me it is important that we balance the spending of health dollars amongst things which are likely to have an effect on a lot of people versus on special programs we might ration amongst only those likely to derive maximum benefit. It can be a cruel reality for parents when their autistic child is rated as "too impaired" to enter a special social skills or language program. For higher functioning kids, this sort of program might enable them to eventually live independent lives in the community whereas there is little hope of this for the children with the worst symptoms.