Loss 2

angry doc is still in pain. More pain than before, in fact.

Nevertheless, a blogger's got to do what a blogger's got to do.

angry doc would thank fellow Clearthought-bloggers Leng Hiong and Edgar and blogger Han Solo for looking at the "evidence" behind "alternative therapies for autism" in the recent discussion on The Online Citizen.

angry doc hasn't got anything to add to the dicussion, but he would like to draw his readers' attention to this parliamentary Q&A on the issue, which he reproduces below:


Autistic Spectrum Disorder
27 Aug 2008

Question No: 578
Question By: Ms Denise Phua Lay Peng

To ask the Minister for Health what measures are being taken to protect the interests of patients with special needs/disabilities from practitioners offering non-evidence-based medical or alternate treatments.

Reply from MOH

1. There are two main levels of protection against such unethical exploitation of patients.

2. First, the Medical Registration Act requires the doctors to practice [sic] ethically. They will be subject to disciplinary action if they use treatments which are not in the interest of their patients.

3. Second, patients and their care-givers must exercise due diligence and consult the right practitioners. When in doubt, they should first check it out with their trusted family physician. Alternatively they could seek a second opinion from the practitioners in the public clinics for patients with special needs, before accepting any unconventional or unusual treatment.

4. Helping patients with special needs is often a long journey. It is understandable why some families become anxious, embarking on remedies that promise them hope of a rapid “cure”. The Internet has further promoted the dissemination of theories and practices, many of which are questionable and without scientific basis. For instance, the use of controversial Complementary and Alternative Medicine (CAM) treatment for children with Autistic Spectrum Disorder (ASD) is popular in the West, despite an absence of scientific support. My Ministry will work with MCYS and its VWOs concerned to educate the families on how to evaluate such information and not be taken in by pseudoscience and unsubstantiated theories. Meanwhile, my Ministry is also collaborating with the Academy of Medicine to formulate Clinical Practice Guidelines to assist doctors in Singapore in diagnosing and managing children with autistic spectrum disorders. The efforts will include compiling the evidence for the various treatments and to disseminate a layman’s version to patients and their caregivers.


While MOH Clinical Practice Guidelines (CPGs) have their limitations, they do provide a handy compilation of references on the subject being discussed, together with glossaries on levels of evidence and grades of recommendations. While they can be a little technical, they are actually available for download from the MOH website by medical professionals and laymen alike.

angry doc is looking forward to receiving a copy of the CPG on autism treatment later this year, and he hopes to be providing a link to the CPG on this blog then.

Three Years

It was fun for a while
There was no way of knowing
Like a dream in the night
Who can say where we're going

No care in the world
Maybe I'm learning
Why the sea on the tide
Has no way of turning

More than this - there is nothing
More than this - tell me one thing
More than this - there is nothing

- Bryan Ferry, "More Than This"

One thousand and ninety-seven days.

Five hundred and eighty-nine posts.

One tired doctor.

angry doc notices that the volume of his output has decreased over the years - 292 posts in the first year, 192 in the second, and just over a hundred in the past year - and he is not sure that the quality of his posts is making up for the shortfall.

Being Angry Doctor is hard work, and ironically being angry alone isn't enough to see angry doc through what is required to sustain this work.

angry doc needs a little break from blogging for now. Just in case he doesn't return, he would like to take this opportunity to thank all his readers and fellow-bloggers who have made this a worthwhile experience.

Stay angry. Keep asking questions.

Subsidy and Other Preoccupations 20

It's not fair, is it? Making angry doc angry on a Sunday morning...


(emphasis mine)

Means testing on track for implementation in January 2009
By May Wong, Channel NewsAsia

SINGAPORE : The government is on track to implement means testing in January next year at all public hospitals.

Health Minister Khaw Boon Wan said preparations are on-going to link up with agencies like the Central Provident Fund Board and the Inland Revenue Authority.

Means testing helps to focus healthcare resources to needy Singaporeans, with low-income citizens receiving higher government subsidies.

Mr Khaw was speaking to reporters after launching a campaign on colorectal cancer on Saturday.

[snip]

Means testing will ensure lower-income Singaporeans have access to subsidised wards like C-class hospital beds.

This scheme will also ensure such beds are not overcrowded by those who can afford higher medical bills.

Mr Khaw said: "I expect a January implementation which is hassle free and ought to be uneventful. (The) majority will not have a problem with means testing and (for) a small minority of high-income patients, the criteria are very generous, so they'll be expected to pay a little bit more, but not a lot more. (It will be) well within their affordability level. So Singaporeans need not worry."

[snip]


It doesn't quite add up, does it?

Let's look at the statements angry doc highlighted in turn.


"Means testing helps to focus healthcare resources to needy Singaporeans, with low-income citizens receiving higher government subsidies."


While the statement is technically true, it is misleading: "low-income" citizens are not going to enjoy higher subsidies than they already do now; instead, "high-income" citizens are going to enjoy lower subsidies than they already do now.

As the minster put it:

"a small minority of high-income patients... they'll be expected to pay a little bit more, but not a lot more."


How much more is "a little bit more"?

A patient with monthly a income of $5,201 and above will receive a 65% subsidy for Class C instead of the usual 80%, while a patient whose income falls between $3,201 and $5,200 will receive a subsidy of between 65-80%.

Given that "the scheme will not affect 80 per cent of Singaporeans", this means that (assuming similar bill sizes between the two groups) even if we assume that the 20% of patients who fail means testing all receive only 65% subsidies instead of 80%, we stand to 'save' 6.25% of spendings in terms of subsidies*. angry doc agrees with the minister that this is "not a lot".

If we take into account the fact that some of these 20% of patients would not have chosen to stay in a C-class bed to begin with, means testing or no, then the 'savings' will be even less than 6.25%.

So let's say means testing allows us to "focus" this 6.25% in "resources" to low-income patients; will it "ensure such [subsidised] beds are not overcrowded by those who can afford higher medical bills"?

angry doc doesn't think so, since according to the FAQ on Means Testing on the MOH site:

"Patients will still retain their freedom to choose their ward class. Any patient, regardless of whether they are rich or poor, can choose to be admitted to a Class C or B2 ward. They will still be heavily subsidized, but at different rates."

So they are free to choose their ward class, they are "heavily subsidized", but the MOH nevertheless expects them to *not* choose a C-class bed. Interesting.

And if they are still free to choose a C-class bed (and who wouldn't? It *is* "heavily subsidized"!), will means testing still "ensure lower-income Singaporeans have access to subsidised wards like C-class hospital beds"?

angry doc will leave his readers to answer that question for themselves.


* - angry doc's maths is poor, so do let him know if he made a error there.

Loss

Well you may never be or have a husband
You may never have or hold a child
You will learn to lose everything
We are temporary arrangements

- Alanis Morissette, "No Pressure over
Cappucinno"

angry doc is in pain.

All doctors should be in pain - it gives them that concerned look.

But seriously, there is nothing like personal pain to put one in a sympathetic mood, and it is in this mood that angry doc would like to look at this article:


(emphasis mine)

Autism 'cures': Helpful or harmful?
Certain studies show alternative therapies may be risky, but some parents say treatments have helped their kids
By Radha Basu, Senior Correspondent


OFTEN, in the dead of night, six-year-old John would wake up squealing. During the day, the boy, who has autism, would be lethargic and surly.

Suspicious that his alternative therapy sessions were hurting rather than healing him, his mother, Mrs Sally Lim (names changed), put a stop to it.

'I saw no improvement in his condition, and there were rumblings on the Internet that it was not safe,' says the 38-year-old project manager in a bank.

Three times a day for six months, she would rub a medicated ointment on John's body as part of a therapy known as 'chelation'.

Based upon the medically disputed theory that mercury in vaccines causes autism, the therapy uses drugs to 'chelate' or bind with heavy metals in the blood, which are then purged from the body in urine.

It is just one of a bewildering array of more than 20 so-called alternative treatments pitched at anxious parents of autistic children in Singapore.

These range from the mundane - such as homeopathy and vitamin treatments - to the bizarre, including one that puts children in high-pressure oxygen chambers, and another that is supposed to map their brainwaves.

With mainstream medicine promising no cure, many parents wade through a sea of expensive therapies in the desperate hope of finding something to make their children well.

Most of the 15 parents interviewed said they had tried at least three or four different treatments, chalking up large bills in the process.

One parent spent $28,000 hoping for a miracle that never happened.

Biomedical therapy, which involves vitamins, supplements and wheat- and milk-free diets, for example, can be continued for years, and costs around $350 each month. Parents have been known to spend up to $10,000 a year on the treatment, plus frequent blood, hair and urine tests.

Transdermal chelation - which Mrs Lim chose for John - requires an ointment to be massaged into the skin. Each tube of ointment costs $100 to $300. The treatment also requires kidney and liver function tests as often as once a month. Each test costs about $270.

The trouble is that many of these treatments are clinically unproven and administered by people who are not medically trained. And the results are mixed.

In the United States, scientists have dubbed chelation a 'voodoo' treatment. A government-funded trial to test DMSA, the chelation drug Mrs Lim used on John, has been suspended because it was deemed too dangerous.

The problem is that the drugs are known to remove essential minerals such as calcium and iron, and there have been reports of at least one botched-up chelation-related death in the US.

A recent study on rodents there showed that DMSA, while effective in overcoming lead poisoning, caused 'lasting emotional and cognitive problems'.

But such studies have been met with vociferous protests from parents and practitioners in Singapore, who claim chelation and other therapies have helped autistic children.

Therapists promoting the various treatments are known to publicise cases of spectacular success - often of their own children.

Seduced by such anecdotes, many parents drift from therapy to therapy, only to learn the hard way that the line between miracle and misery is thin.

Ms Jacqueline Ang, 38, who has two children with autism and runs an online support group for parents, says the devastation parents face at diagnosis is difficult for others to understand.

'How can you live with the fact that your child will never be cured? So we grab whatever little we get by way of hope,' she says.

Her support group has about 560 parent members. 'Easily 80 per cent have tried some form of alternative treatment,' she says.

To help parents steer clear of dangerous, expensive and ineffective treatments, a 19-member committee of paediatricians and other health professionals is now scrutinising overseas research on the efficacy of the various therapies.

MP Denise Phua, who has a 13-year-old son with autism and runs the Autism Resource Centre, sees the new Ministry of Health-supported initiative as timely.

'If aesthetic treatments can be regulated, there is an even greater need to regulate intrusive autism treatments such as chelation, which are being administered by practitioners who are not medically trained,' she says.

Paediatrician Lim Sok Bee, who heads the committee, says the biggest risk comes from invasive therapies in which a child is made to take pills, syrups or even injections, or is denied food such as milk and wheat, which are essential for growth.

She warns: 'Parents should be aware that if not properly monitored, the child could end up being malnourished - this, in turn, may cause convulsions.'

Housewife Melinda Chew (name changed) knows exactly how frightening this can be. In 2006, she rushed her son Jeremy, then two, to hospital after he convulsed with fits and foamed at the mouth.

Moments earlier, the housewife had fed her son some milk, which a nutritionist had banned from his diet as part of biomedical therapy to 'treat' his autism.

The diet-and-supplement regime caused the boy to lose a lot of weight. 'He used to love milk, so I thought I would ditch the diet and give him some milk since he had not been eating much for days,' says Mrs Chew.

Doctors at the hospital were able to revive Jeremy. But her doubts lingered. 'If I had not started the diet, this may not have happened at all.'

She stopped the therapy. Jeremy is now back to drinking milk and has regained the weight he lost.

But as a mother, she says she cannot give up hope. Early last year, she put him on two other therapies - a form of Japanese energy healing and homeopathy.

This time, she says the results are 'spectacular'.

Little Jeremy talks more, can colour and look his mother in the eye.

'I am so happy,' Mrs Chew says, a slow smile spreading across her face. 'Things are finally looking up.'

For now, at least.


The article is more critical of alternative medicine than angry doc had expected of the Straits Times, so he will not dwell on the scientific aspects of the issue.

What angry doc is interested in discussing is what drives the parents to seek unconventional, implausible, and potentially dangerous 'treatment' for their children.

Some psychologists (and doctors too, angry doc supposes) believe that parents of a child with disability undergo the process of mourning and grieving for the loss of a "normal" child. This concept is discussed eloquently in this article by psychologist Dr Ken Moses reproduced on the Pediatric Services website.

angry doc feels these two paragraphs from the article must describe how parents of children with autism feel:

"Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning...

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving."


angry doc cannot claim to understand the pain and sense of loss felt by parents of children with autism, but as a medical professional he understands enough about science and evidence to know when the claim of a cure is no more than just a claim. If autism cannot be cured - and there is no evidence that it can be - then perhaps what parents of autistic children should do is not to subject their children to one form of unproven therapy after another, but to accept that their children, different as they may be, are children to be loved, and not disabilities to be cured.

As for pain, Dr Moses concludes in his article that "experiencing and sharing the pain is the solution, not the problem." So if it's all right with you, angry doc would like to go savour his pain now.

Thank you.

Of Shoes and Stethoscopes

angry doc's stethoscope broke today.

Long-time readers will recall that the last time this happened was more than two years ago. How time flies.

Once again, angry doc had to go around begging for a spare one to tide him through the day. Initially he did not meet with much success, receiving instead of relief jokes about his manhood and the friendly advice of 'They sell them at Mustafa' (which incidentally is, as angry doc found out, *the* place to go to get medication on a holiday evening when pharmacies are closed).

Eventually his friend M, who was leaving work early, graciously loaned his to angry doc, but not before dispensing more advice.


M: They sell them at Mustafa.

angry doc: Er, ya - I know now. Thanks.

M: Get two.

angry doc: Huh? You mean you want one too?

M: No, I already have a spare at home. Get two for yourself.

angry doc: But why would I need two?

M:*sigh* Your new one's going to break one day too, right?

angry doc: Probably. Yes.

M: And you don't plan on changing jobs for a while, right?

angry doc: No, no plans to.

M: They are not going to become cheaper, or better, right?

angry doc: Again, no.

M: So if they are going to break, and you are not going to switch jobs, and if you are going to buy the same model again, then you might as well buy a few and save yourself a few trips later, right?

angry doc: I see your point...

M: It's like your work shoes, right?

angry doc: Shoes?

M: You wear these nondescript, black, laced-up shoes to work every day. They wear out after a while, and you are going to need a new pair for work. When you get a replacement, you are going to get the same nondescript, black, laced-up shoes because they are not going to go out of fashion. Your feet aren't getting any bigger too, right? So if you find a pair that fits, you might as well get several at one go. Now if you'll excuse me, I have some shopping to do...


How can you argue with the man's logic? angry doc is going on a shopping spree this weekend.

Here's looking at you, kid.