Swedish Council for Novel Therapies sets a limit for cost of medication to preserve life

June 8, 2015

The Swedish Council for Novel Therapies (NT-rådet) has recommended that certain medicines should not be given to patients if they are too expensive – even if the alternative is death. The recommendation is to the Counties who run the hospitals on behalf of the country’s health service. Effectively it means that patients who have atypical hemolytic-uremic syndrome (a-HUS) can no longer be prescribed Eculizumab. There is no known cure for this quite rare (1:500,000) genetic condition  which attacks the kidneys:

Atypical hemolytic-uremic syndrome is a disease that primarily affects kidney function. This condition, which can occur at any age, causes abnormal blood clots (thrombi) to form in small blood vessels in the kidneys. These clots can cause serious medical problems if they restrict or block blood flow. Atypical hemolytic-uremic syndrome is characterized by three major features related to abnormal clotting: hemolytic anemia, thrombocytopenia, and kidney failure.

With a population of just under 10 million, Sweden may have about 20 individuals suffering from this genetic condition. Eculizumab (trade name Soliris) is a medication that has recently been approved for the treatment of aHUS, an ultra-rare genetic disease that causes abnormal blood clots to form in small blood vessels throughout the body, leading to kidney failure, damage to other vital organs and premature death. But it costs approximately €430,000 per year for ongoing treatment.

Clinical trials in patients with aHUS demonstrated inhibition of thrombotic microangiopathy (TMA), the formation of blood clots in small blood vessels throughout the body, including normalization of platelets and lactate dehydrogenase (LDH), as well as maintenance or improvement in renal function.

The medicine does not cure the condition but inhibits the expression of some its fatal effects. It gives a patient a chance to live on.

But as Swedish Radio reports, the Swedish Council for Novel Therapies has decided that this cost of keeping a patient living is too high. For this council, the value of the life of a patient suffering from a-HUS is clearly less than about SEK 4 million per year.

Clearly there is an economic cost benefit analysis to be made for all medical treatment. Clearly also an unlimited cost for keeping someone alive is also not possible. But what about the value of the life to be prolonged? Even assuming that there is some cost limit which is not be borne, the “forbidden” cost level cannot just be an absolute value which takes no note of the value of the life preserved. If cost-benefit is to be the guiding factor, then should not all health costs be balanced against the life or the quality of life to be preserved?

Swedish Radio:

The Swedish Counties’ council of experts, the Council on Novel Therapies, has decided to discourage counties from using a drug for a very rare and life-threatening blood disorder. The reason is that the medicine will cost 4.5 million kronor per patient annually – making it one of the most expensive in the world. A small group of patients could thus eventually die of the disease that brings inflammation, clots and kidney failure. 

“I think it is a completely unreasonable decision. One can not deny the patients with this difficult disease to receive treatment. Although there is plasma and dialysis treatment, survival is most certainly not so long as with this treatment. So I think that they have to change their decision”, says chief physician Ingela Fehmarn-Ekholm.

The disease is called aHUS (atypical hemolytic uremic syndrome), where the blood cells break down and patients become anemic and can get blood clots, stroke, and renal failure.

Ingela Fehrman Ekholm describes one of the patients she treated with the new drug. Before it came, he had donated a kidney to his daughter who suffered from the disease, but the girl did not survive.

A year later he  himself got aHUS. After several years of dialysis and three kidney transplants, he received the new medicine. “It is now almost three years, absolutely no side effects and kidney works great and he feels great”, says Fehmarn-Ekholm.

But it would seem that for this patient, Stefan Persson, the treatment will not be able to continue if this recommendation is followed.

However the statement from the Chairman of the Council almost reads as if it is just a game – a price negotiation with the manufacturer with the death of patients being played out as one card in the game.

Stefan Back is the Chairman of the Council of Novel Therapies that has taken the decision stop using the medicine Soliris.

He believes that the responsibility lies with the manufacturer, who failed to show why the drug has such a high price.

“It is regrettable that it had to come to this because it’s not an easy decision to make. It leads to anxiety with the patients and we hope that the company will deliver significantly better economic evidence and perhaps a lower price”.

A price negotiation where patients’ lives and their peace of mind are just another card to play.

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Indian monsoon sets in, risk for deficiency remains but so far, so good

June 8, 2015

The long range forecast was revised a few weeks ago and there is a risk that this year’s monsoon may be somewhat deficient. But the onset has not been much delayed and the first week’s rainfall is slightly above “normal. The second LRF cast a shadow over the markets when it was announced. But the pessimism may have been overdone.

2nd stage Long Range Forecast:

  • Rainfall over the country as a whole for the 2015 southwest monsoon season (June to September) is likely to be deficient (<90% of LPA).
  • Quantitatively, monsoon season rainfall for the country as a whole is likely to be 88% of the long period average with a model error of ±4%.
  • Region wise, the season rainfall is likely to be 85% of LPA over North-West India, 90% of LPA over Central India, 92% of LPA over South Peninsula and 90% of LPA over North-East India all with a model error of ± 8 %.
  • The monthly rainfall over the country as whole is likely to be 92% of its LPA during July and 90% of LPA during August both with a model error of ± 9 %.

The monsoon onset was just a couple of days “late” compared to the forecast date (which is in itself always a warning sign). Furthermore, this year could be an El Nino (albeit weak El Nino) year which could depress rainfall levels. One week into the 13 week monsoon season, however, rainfall is running at 4% above the long term average.

monsoon advance June 6th 2015

monsoon advance June 6th 2015

The northern and western ends of the front are progressing well but the central section is well behind its “normal” advance. In terms of rainfall distribution the north-east and the south which usually receive the highest rainfall by this time are running slightly ahead of normal. The central and north-west region receive low levels of rainfall in  this period but the north-west is running 44% above normal while the central regions are deficient and running at -20%.

rainfall till 6th June 2015

The warnings about potential deficiency has led to the government planning measures for those farmers who are not “covered” by irrigation networks and are solely dependent upon rainfall.

But, so far, so good.

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Documents confirm that FIFA sent $10 million from South Africa to Jack Warner

June 7, 2015

Even though South Africa tried to hide their payment, it seems irrefutable that the South African government arranged matters such that FIFA’s accounts grew by $10 million as they were awarded the 2010 World Cup. Earlier revelations showed that the South African government (and apparently approved by President Mbeki) saw to it that the National Lottery payed the government $10 million less than they should have and payed it instead to the South African Football Association. They in turn payed the $10 million to the 2010 World Cup Local Organising Committee who then received $10 million less from what was due from FIFA, thus effectively completing a transfer of $10 million. A payment which was eventually debited from the government’s account and eventually credited to FIFA.

From South Africa to jack Warner via FIFA

Now the BCC reports that the payments of the $10 million from FIFA to accounts personally controlled by Jack Warner have also been confirmed. How Jack Warner delivered the votes he may have committed to South Africa is not clear.

A BBC investigation has seen evidence that details what happened to the $10m sent from Fifa to accounts controlled by former vice-president Jack Warner.

The money, sent on behalf of South Africa, was meant to be used for its Caribbean diaspora legacy programme. But documents suggest Mr Warner used the payment for cash withdrawals, personal loans and to launder money. The papers seen by the BBC detail three wire transfers by Fifa.

In the three transactions – on 4 January, 1 February and 10 March 2008 – funds totalling $10m (£6.5m) from Fifa accounts were received into Concacaf accounts controlled by Jack Warner.

…… The documents reveal how the money was spent and moved around.

JTA Supermarkets, a large chain in Trinidad, received $4,860,000 from the accounts. The money was paid in instalments from January 2008 to March 2009. The largest payment was $1,350,000 paid in February 2008. US prosecutors say the money was mostly paid back to Mr Warner in local currency. ……. The documents also show $360,000 of the Fifa money was withdrawn by people connected to Mr Warner. …… Nearly $1.6m was used to pay the former Fifa vice-president’s credit cards and personal loans. The documents show the largest personal loan Mr Warner provided for himself was $410,000. The largest credit card payment was $87,000.

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American Pharoah triumphs – but Secretariat’s records still stand

June 7, 2015

Lat night American Pharoah won the Belmont Stakes and with it the first Triple Crown since 1978. In the 1970s we saw 3 Triple Crown winners starting with Secretariat in 1973 after a gap of 25 years and followed by Seattle Slew in 1977 and Affirmed in 1978.

Kentucky Derby and Preakness Stakes winner American Pharoah stands while being bathed following his morning workout at Belmont Park in Elmont, New York June 3, 2015.

American Pharoah: photo Shannon Stapleton /Reuters via The Daily Beast

Comparisons are of no great significance but back in 1973, Secretariat caught my imagination in a manner that no horse ever had before – not even Silver or Trigger.  Last night, American Pharoah faced a much larger field in the Belmont Stakes than Secretariat did. He won quite comfortably by five lengths and a time of 2:26.65, the sixth-fastest time in Belmont history.

Trying to compare the two horses, 37 years apart is meaningless. When Secretariat won the Belmont he won by 31 lengths and he was till going away at the finish line. He set winning times in all the three Triple Crown events. The Kentucky Derby(1:59.4), the Preakness Stakes (1:53), and the Belmont Stakes (2:24). But, 37 years later Big Red’s record times in all three races have not yet been beaten. The longest time a human athletics record has lasted was Bob Beamon’s long jump record which lasted 23 years (though 47 years later, his Olympic record still stands). To hold one record for so long is impressive enough, but Big Red still holds his records for 3 major races.

American Pharaoh has ensured his place in equine history. But it is still Secretariat – “The Tremendous Machine” – which embodies the Triple Crown in my imagination. “That is a record which may stand forever”.

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Sweden’s National Day today – but it’s a pale shadow of Midsommar

June 6, 2015

It’s the 6th of June and its Sweden’s National Day but it is raining this morning. At least the rain is reasonably warm and we should get up to about 22ºC today. It is an artificial National Day and has very little significance in its origin or in practice. It generates little emotion and has no real tradition to speak of. Its importance is a pale shadow to that of Midsommar. If one takes 1893 as the origin of the day then it was entirely a marketing ploy by Artur Hazelius.

The real origin of the choice of 6th June was bad weather and the ensuring of revenues from an organised festival! In 1893, a Spring Festival had to be reorganised hastily by Artur Hazelius for the 6th of June because it rained heavily on the day he had planned. The “Festival” was planned to draw in money from the public of course!

In more recent times, the loony right (fascists, neo-nazis and other xenophobes), including the Sweden Democrats, have tried to use the National day to express their xenophobia. But with almost 20% of the current citizenry having been born outside of Sweden, even the Sweden Democrats have realised the futility (and political stupidity) of their xenophobia and are trying to clean up their act. (This strategy is working and they have never had a higher level of support – about 14% – than now. So far they only have a few token immigrants among their supporters).

But this year the Google Doodle for the day is by Stina Wirsén and is intended to be an image celebrating “inclusion”.

Sweden National Day Google Doodle by Stina Wirsén

Sweden National Day Google Doodle by Stina Wirsén

I wrote last year:

Perhaps the best thing about Sweden’s national day today is that there is not very much jingoism and nationalism and patriotic fervour in evidence. If anything it is more a celebration of the values of human freedoms rather than any particular celebration of the nation state within its geographical boundaries. Even the national (but unofficial) anthem is more a paean to the North – Scandinavia (“Oh! I wish to live, I wish to die in Norden”) rather than specifically to Sweden.

The 6th of June has been a national holiday only since 2005, has been officially the National Day only since 1983 and before that was the Swedish Flag day but only since 1916. It was chosen ostensibly because the 6th of June was the day on which Gustav Vasa was crowned in 1523. But the real reason of course is that because there is a very good chance that the 6th of June will be a nice warm summer day! …… 

I don’t mind too much if it rains a bit today – as long as it does not for Midsommar.

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The South Africa – FIFA- Warner payment web

June 5, 2015

With Danny Jordaan’s letter and the one from Oliphant it is almost certain that the award of the 2010 World Cup involved the purchase of some votes. There is no other reasonable explanation. It is difficult to see why such a convoluted trail would be necessary if the South African government just wanted to provide $10 million to help the African diaspora in the Caribbean.

Certainly it seems that the government of South Africa made some commitment to provide $10 million to be under the direct control of Jack Warner. Then, by a very tortuous route the money was provided. The main ” achievement” of the convoluted path used was that no direct payments needed to be made by the South African government. Instead they “paid” by receiving $10 million less than they should have received from the National Lotteries Board. The Lotteries Board provided R88 million over 3 years (amounting to $10 million at the then exchange rates) to the South African Football Association (SAFA). SAFA provided $10 million to the 2010 World Cup Local Organising Committee (LOC). LOC then “paid” this money to FIFA by receiving $10 million less than they should have from FIFA for holding the 2010 World Cup. They received $413 million instead of the budgeted $423 million. FIFA then paid $10 million to CONCACAF who in turn put it into the Diaspora Legacy Program which was personally administered by Jack Warner.

Where the money went to after that is not certain.

From the two letters and as shown in the Mail & Guardian article, the South African web looks like this:

From S Africa to Warner via FIFA

From S Africa to Warner via FIFA

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Swedish media pretend that Women’s World Cup starting tomorrow is the real thing

June 5, 2015

There is a certain cowardice when “fashionable feminism” ignores common sense. It is just a little sad when being “fashionable” or “politically correct” leads to the non-exercise of the intellect (which is just my euphemism for stupidity). I have a great deal of respect for those who champion the equality of behaviour and fight for ways and means to foster that. But I have little respect for the “fashionable feminists” who cannot see that the term “gender equality” is, and should be, all about behaviour and not about genetics.

The “politically correct”, “fashionably feministic”, view in Sweden is that the tournament starting tomorrow in Canada is the Football World Cup and should be called that. But of course it isn’t. It is the Women’s World Cup 2015 and nothing else. The Football World Cup is something quite different and living in a fantasy world does not alter reality. Fortunately, FIFA didn’t agree. Of course being FIFA, if there was enough money offered, they might well have changed their minds. But even if they had, they would have been wrong. The Women’s Football World Cup is not the Football World Cup but there are those in the Swedish media (here and here for example) who do not exercise their minds very greatly in their eager quest to be fashionably feministic.

Just calling it the Football World Cup will not make it so. The men’s final at Wimbledon is something quite different to the women’s final. When we speak of the Wimbledon Final, without any qualifying gender, we mean, and we understand it to mean, the Men’s Final. The Women’s Football World Cup is just that – the football world cup for women. It is not, in fact, the real thing.

If the fashionable feminists mean that the women’s tournament should not be differentiated from the men’s tournament, then there should only be one tournament. As long as there are two different tournaments then some qualifying adjective is necessary. The primary differentiating parameter for the two tournaments is actually gender. If the fashionable feminists had exercised their minds they may have realised they had a case for insisting that FIFA use the word “Men’s” to qualify the real World Cup. But demanding that the women’s tournament be allowed to drop the qualifying gender is just stupid.

The “fashionable feminists” don’t seem to realise that “gender equality” is actually about equality of behaviour and is not about genetics. And those who believe that “gender equality” is not about behaviour but is about denying gender difference, are not exercising their minds or exhibiting much intelligence. Legislating for gender equality – rather than for equality of behaviour – can not remove gender difference and does not change behaviour.

The simple fact is that the gender characteristics of humans exhibit a binodal continuum. Gender is not therefore strictly dimorphic but the two nodes are very clear and they dominate in the distribution of gender characteristics among humans.

Denying the difference does not make it go away. For real “gender equality” everybody would have to lie in the transgender region.

TV 4 (which is planning to cover the tournament with a lot of women’s commercials interspersed with some women’s football) and the newspaper Aftonbladet (red/green in politics and very fashionably feministic) are outraged.

Aftonbladet: TV4 planned to refer to this summer’s World  Championships in Canada as the “FIFA World Cup”.
But Fifa has stopped the channel from doing so.
According to TV4 host Patrick Ekwall, FIFA has ordered that the tournament must be called “the FIFA Women’s World Cup” in the channel’s broadcasts.

As I have noted before:

A politically correct young lady from Sweden,

Insisted on being referred to as a “hen”,

She objected strenuously to “she”,

and quite violently to “he”,

Which caused consternation among her young men.

 

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In spite of Google apology, Modi still prominent in “Top 10 criminals” image search

June 4, 2015

It seems the Google search algorithms are all too easily subverted. I suspect that Google itself carries out “subversion” to put its favoured documents or images higher up in the list of “hits”.

BBC: Internet giant Google has apologised after Indian PM Narendra Modi’s photos started appearing in the image search results for “Top 10 criminals”. 

“We apologise for any confusion or misunderstanding this has caused,” a Google statement said. Mr Modi figures prominently in the search alongside images of terrorists, murderers and dictators. Other world leaders on the list include former US president George Bush and Libya’s Muammar Gaddafi. 

Other prominent Indians who come up in the search include Delhi Chief Minister Arvind Kejriwal, lawyer Ram Jethmalani, fugitive underworld don Dawood Ibrahim and Bollywood actor Sanjay Dutt who is serving a jail term in connection with deadly blasts in Mumbai in 1993. “These results trouble us and are not reflective of the opinions of Google,” the company said in its statement released on Wednesday night.

But a search just now (screenshot below) shows that Google have not been able to correct their algorithms. In a Google image search for “top 10 criminals”, Narendra Modi appears 8 times among the first 40 images and more often than anyone else, even Osama bin Laden. I gave up counting after that but his image keeps cropping up. George Bush and Bill Gates are there as well. But I couldn’t find Tony Blair.

Modi as

Modi as “top 10 criminal” on google

The internet firm said the result was due to a British daily which had published an image of Mr Modi with erroneous metadata.

Really?

For 8 images out of 40?

It is pretty obvious that the results of a Google search do not represent a listing by popularity or importance. In fact the first 4 or 5 entries after the ads are often subverted. And switching from “News” to “web” to “images” or back again can very easily confuse the Google algorithms.

In any event it is best to assume that a Google search gives a list of mainly relevant results. The list is neither comprehensive nor objective. The ranking of hits on the list of is no real relevance since it can be so easily subverted and sometimes, it seems, the subversion is by Google itself. The first 4 or 5 “hits” after the obvious ads – for some searches – also seem to be sponsored in some way. Almost as if Google has overt and covert ads.

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Obamacare is not eliminating the short term cover it was supposed to

June 4, 2015

Somebody stated to me that history would remember Barack Obama for Obamacare. But I am not so convinced. I suspect that he will be remembered only for being the first “black” (actually only half-black) President. He may also be remembered for his tendency to allow fear to subordinate his actions. His tendency to overthink issues and take little action and his disinclination to develop strategies may also be remembered. Whether Obamacare will stand the test of time remains to be seen. In the short time it has been in force, large parts of it are counter-productive. That may just be a peculiarity of the “open enrollment” windows or something more fundamental.

The primary benefit of Obamacare (Affordable Care Act) was, ostensibly, to make health care affordable to all. For older people it is proving to be unaffordable and they have to seek alternative cover. As Reuters reports, the alternative cover that Obamacare was supposed to eliminate has risen by over 100%. Alternative cover is even being chosen by the young for “catastrophic” coverage. To make matters even worse, those who take out such alternative cover are deemed uninsured and are subject to penalties.

Reuters:

Despite the promise of coverage through the U.S. Affordable Care Act (ACA), the number of people applying for non-compliant, short-term health insurance policies was up more than 100 percent in 2014, according to new data available from companies who broker these policies.

This type of health insurance is exactly the kind that the ACA, known commonly as Obamacare, was supposed to upgrade. Short-term plans provide low-cost coverage for major medical events like hospital stays, with high deductibles and out-of-pocket costs, and are subject to denial if applicants have pre-existing conditions. They do not offer the protections of Obamacare for preventive care or maternity coverage, for example.

The government does not count these gap plans as qualifying health insurance, so people who have them are subject to penalties for being uninsured. ……..

….. Sign-ups at eHealth Inc to the short-term plans it offers through its website were up to 140,000 in 2014 from 60,000 in 2013, an increase of 134 percent, according to the company.

At another short-term carrier, Agile Health Insurance, a subsidiary of Health Insurance Innovations Inc, new policies were up 100 percent last year over the previous year, and are up again so far in 2015, according to Scott Lingle, the company’s senior vice president of business development.

Accounting for much of the jump are individuals who somehow missed the open enrollment period for an Obamacare plan. More than 11.7 million consumers signed up for Obamacare coverage through Feb. 22, according to the government. …… 

Both eHealth and Agile are also seeing new signups from retirees who are looking for a low-cost plan to tide them over until Medicare kicks in at 65. At eHealth, the 55 to 64 age group is now 9 percent of the market.

“If you shop for a 50-year-old on healthcare.gov, it is very expensive,” says Agile’s Lingle. “There are people who have looked at the prices and it makes more sense to buy short term.”

The largest constituency is young, healthy people seeking low-cost catastrophic coverage. Those aged 18 to 34 account for 57 percent of eHealth’s buyers. A typical policy could cost around $100 a month, depending on the state of residency and the features of the plan.

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Dreaming

June 4, 2015

sClass

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