When the trust is gone

In an age where we see an abundance of political issues, an overgrowing need to sort things out, the news that was given visibility by the Guardian is the one that scared and scarred me the most. With ‘Lack of trust in health department could derail blood contamination inquiry‘ (at https://www.theguardian.com/society/2017/jul/19/lack-of-trust-in-health-department-could-derail-blood-contamination-inquiry), we need to hold in the first stage a very different sitting in the House of Lords. You see, the issues (as I am about to explain them), did not start overnight. In this I am implying that a sitting with in the dock Jeremy Hunt, Andrew Lansley, Andy Burham and Alan Johnson is required. This is an issue that has grown from both sides of the Isle and as such there needs to be a grilling where certain people are likely to get burned for sure. How bad? That needs to be ascertained and it needs to be done as per immediate. When you see “The contamination took place in the 1970s and 80s, and the government started paying those affected more than 25 years ago” the UK is about to get a fallout of a very different nature. We agree that this is the term that was with Richard Crossman, Sir Keith Joseph, Barbara Castle, David Ennals, Patrick Jenkin, Norman Fowler, and John Moore. Yet in that instance we need to realise that this was in an age that was pre computers, pre certain data considerations and a whole league of other measures that are common place at this very instance. I remember how I aided departments with an automated document system, relying on 5.25″ floppy’s, with the capability that was less than Wordstar or PC-Write had ever offered. And none of those systems had any reliable data storage options.

The System/36 was flexible and powerful for its time:

  • It allowed 80 monitors (see below for IBM’s description of a monitor) and printers to be connected. All users could access the system’s hard drive or any printer.
  • It provided password security and resource security, allowing control over who was allowed to access any program or file.
  • Devices could be as far as a mile from the system unit.
  • Users could dial into a System/36 from anywhere in the world and get a 9600 baud connection (which was very fast in the 1980s) and very responsive for connections which used only screen text and no graphics.
  • It allowed the creation of databases of very large size. It supported up to about 8 million records, and the largest 5360 with four hard drives in its extended cabinet could hold 1.453 gigabytes.
  • The S/36 was regarded as “bulletproof” for its ability to run many months between reboots (IPLs).

Now, why am I going to this specific system, as the precise issues were not yet known? You see in those days, any serious level of data competency was pretty much limited to IBM, at that time Hewlett Packard was not yet to the level it became 4 years later and the Digital Equipment Corporation (DEC) who revolutionised systems with VAX/VMS and it became the foundation, or better stated true relational database foundations were added through Oracle Rdb (1984), which would actually revolutionise levels of data collection.

Now, we get two separate quotes (not from the article) “Dr Jeremy Bradshaw Smith at Ottery St Mary health centre, which, in 1975, became the first paperless computerised general practice“, as well as “It is not developed or intended for use in any inherently dangerous applications, including applications that may create a risk of personal injury. If you use this software or hardware in dangerous applications, then you shall be responsible to take all appropriate fail-safe, backup, redundancy, and other measures to ensure its safe use“, the second one comes from the Oracle Rdb SQL Reference manual. The second part seems a bit of a stretch; consider the original setting of this. When we see Oracle’s setting of data integrity, consider the elements given (over time) that are now commonplace.

System and object privileges control access to application tables and system commands, so that only authorized users can change data.

  • Referential integrity is the ability to maintain valid relationships between values in the database, according to rules that have been defined.
  • A database must be protected against viruses designed to corrupt the data.

I left one element out for the mere logical reasons.

now, in those days, the hierarchy of supervisors and system owners was nowhere near what it is now (and often nowhere to be seen), referential integrity was a mere concept and data viruses were mostly academic, that is until we get a small presentation by Ralf Burger in 1986. It was in the days of the Chaos Computer Club and my trusty CBM-64.

These elements are to show you that data integrity existed in academic purposes, yet the designers who were in their data infancy often enough had no real concept of rollback data events, some would only be designed too long later, and in all this, the application of databases to the extent that was needed. It would not be until 1982 when dBase II came to the PC market from the founding fathers of what would later be known as Ashton-Tate, George Tate and Hal Lashlee would create a wave that would get us dBase III and with the creation of Clipper by the Nantucket Corporation, which would give a massive rise to database creations as well as the growth of data products that had never been seen before, as well as being the player that in the end propelled data quality towards the state it is nowadays. In this product databases did not just grow with the network abilities within this product nearly any final year IT person could have its portfolio of clients all with custom based products all data based. Within 2-3 years (which gets us to 1989), a whole league of data quality, data cleaning and data integrity base issues would surface for millions of places, all requiring solutions. It is my personal conviction that this was the point where data became adult, where data cleaning, data rollback as well as data integrity checks became actual issues that were seriously dealt with. So, here in 1989 we are finally confronted with the adult data issues that for the longest of times were only correctly understood by more than a few niche people who were often enough disregarded (I know that for certain because I was one of them).

So the essential events that could have prevented only to some degree the events we see in the Guardian with “survivors initially welcomed the announcement, while expressing frustration that the decades-long wait for answers had been too long. The contamination took place in the 1970s and 80s“, certain elements would not come into existence until a decade later.

So when we see “Liz Carroll, chief executive of the Haemophilia Society, wrote to May on Wednesday saying the department must not be involved in setting the remit and powers of an inquiry investigating its ministers and officials. She also highlighted the fact that key campaigners and individuals affected by the scandal had not been invited to the meeting“, I am not debating or opposing her in what could be a valid approach, I am merely stating that to comprehend the issues, the House of Lords needs to take the pulse of events and the taken steps forward from the Ministers who have been involved in the last 10 years.

When we see “We and our members universally reject meeting with the Department of Health as they are an implicated party. We do not believe that the DH should be allowed to direct or have any involvement into an investigation into themselves, other than giving evidence. The handling of this inquiry must be immediately transferred elsewhere“, we see a valid argument given, yet when we would receive testimonies from people, like the ministers in those days, how many would be aware and comprehend the data issues that were not even decently comprehended in those days? Because these data issues are clearly part of all of these events, they will become clear towards the end of the article.

Now, be aware, I am not giving some kind of a free pass, or give rise that those who got the bad blood should be trivialised or ignored or even set to a side track, I am merely calling for a good and clear path that allows for complete comprehension and for the subsequent need of actual prevention. You see, what happens today might be better, yet can we prevent this from ever happening again? In this I have to make a side step to a non-journalistic source, we see (at https://www.factor8scandal.uk/about-factor/), “It is often misreported that these treatments were “Blood Transfusions”. Not True. Factor was a processed pharmaceutical product (pictured)“, so when I see the Guardian making the same bloody mistake, as shown in the article, we see and should ask certain parties how they could remain in that same stance of utter criminal negligence (as I personally see it), but giving rise to intentional misrepresentation. When we see the quote (source: the Express) “Now, in the face of overwhelming evidence presented by Andy Burnham last month, Theresa May has still not ordered an inquiry into the culture, practice and ethics of the Department of Health in dealing with this human tragedy” with the added realisation that we have to face that the actual culprit was not merely data, yet the existence of the cause through Factor VIII is not even mentioned, the Guardian steered clear via the quote “A recent parliamentary report found around 7,500 patients were infected by imported blood products from commercial organisations in the US” and in addition the quote “The UK Public Health Minister, Caroline Flint, has said: “We are aware that during the 1970s and 80s blood products were sourced from US prisoners” and the UK Haemophilia Society has called for a Public Inquiry. The UK Government maintains that the Government of the day had acted in good faith and without the blood products many patients would have died. In a letter to Lord Jenkin of Roding the Chief Executive of the National Health Service (NHS) informed Lord Jenkin that most files on contaminated NHS blood products which infected people with HIV and hepatitis C had unfortunately been destroyed ‘in error’. Fortunately, copies that were taken by legal entities in the UK at the time of previous litigation may mean the documentation can be retrieved and consequently assessed“, the sources the Express and the New York Times, we see for example the quote “Cutter Biological, introduced its safer medicine in late February 1984 as evidence mounted that the earlier version was infecting hemophiliacs with H.I.V. Yet for over a year, the company continued to sell the old medicine overseas, prompting a United States regulator to accuse Cutter of breaking its promise to stop selling the product” with the additional “Cutter officials were trying to avoid being stuck with large stores of a product that was proving increasingly unmarketable in the United States and Europe“, so how often did we see the mention of ‘Cutter Biological‘ (or Bayer pharmaceuticals for that matter)?

In the entire Arkansas Prison part we see that there are connections to cases of criminal negligence in Canada 2006 (where Canadian Red Cross fell on their sword), Japan 2007 as well as the visibility of the entire issue at Slamdance 2005, so as we see the rise of inquiries, how many have truly investigated the links between these people and how the connection to Bayer pharmaceuticals kept them out of harm’s way for the longest of times? How many people at Cutter Biological have not merely been investigated, but also indicted for murder? When we get ‘trying to avoid being stuck with large stores of a non-sellable product‘ we get the proven issue of intent. Because there are no recall and destroy actions, were there?

Even as we see a batch of sources giving us parts in this year, the entire visibility from 2005-2017 shows that the media has given no, or at best dubious visibility in all this, even yesterday’s article at the Guardian shows the continuation of bad visibility with the blood packs. So when we look (at http://www.kpbs.org/news/2011/aug/04/bad-blood-cautionary-tale/), and see the August 2011 part with “This “miracle” product was considered so beneficial that it was approved by the FDA despite known risks of viral contamination, including the near-certainty of infection with hepatitis“, we wonder how the wonder drug got to be or remain on the market. Now, there is a fair defence that some issues would be unknown or even untested to some degree, yet the ‘the near-certainty of infection with hepatitis‘ should give rise to all kinds of questions and it is not the first time that the FDA is seen to approve bad medication, which gives rise to the question why they are allowed to be the cartel of approval as big bucks is the gateway through their door. When we consider the additional quote of “By the time the medication was pulled from the market in 1985, 10,000 hemophiliacs had been infected with HIV, and 15,000 with hepatitis C; causing the worst medical disaster in U.S. history“, how come that it took 6 years for this to get decent amounts of traction within the UK government.

What happened to all that data?

You see, this is not merely about the events, I believe that if any old systems (a very unlikely reality) could be retrieved, how long would it take for digital forensics to find in the erased (not overwritten) records to show that certain matters could have been found in these very early records? Especially when we consider the infancy of data integrity and data cleaning, what other evidence could have surfaced? In all this, no matter how we dig in places like the BBC and other places, we see a massive lack of visibility on Bayer Pharmaceuticals. So when we look (at http://pharma.bayer.com/en/innovation-partnering/research-focus/hemophilia/), we might accept that the product has been corrected, yet their own site gives us “the missing clotting factor is replaced by a ‘recombinant factor’, which is manufactured using genetically modified mammalian cells. When administered intravenously, the recombinant factor helps to stop acute bleeding at an early stage or may prevent it altogether by regular prophylaxis. The recombinant factor VIII developed by Bayer for treating hemophilia A was one of the first products of its kind. It was launched in 1993“, so was this solution based on the evolution of getting thousands of people killed? the sideline “Since the mid-1970s Bayer has engaged in research in haematology focusing its efforts on developing new treatment options for the therapy of haemophilia A (factor VIII deficiency)“, so in all this, whether valid or not (depending on the link between Bayer Pharmaceuticals UK and Cutter Biological. the mere visibility on these two missing in all the mentions, is a matter of additional questions, especially as Bayer became the owner of it all between 1974 and 1978, which puts them clearly in the required crosshairs of certain activities like depleting bad medication stockpiles. Again, not too much being shown in the several news articles I was reading. When we see the Independent, we see ‘Health Secretary Jeremy Hunt to meet victims’ families before form of inquiry is decided‘, in this case it seems a little far-fetched that the presentation by Andy Burham (as given in the Express) would not have been enough to give an immediate green light to all this. Even as the independent is hiding behind blood bags as well, they do give the caption of Factor VIII with it, yet we see no mention of Bayer or Cutter, yet there is a mention of ‘prisoners‘ and the fact that their blood was paid for, yet no mention of the events in Canada and Japan, two instances that gives rise to an immediate and essential need for an inquiry.

In all this, we need to realise that no matter how deep the inquiry goes, the amount of evidence that could have been wiped or set asunder from the eyes of the people by the administrative gods of Information Technology as it was between 1975 and 1989, there is a dangerous situation. One that came unwillingly through the evolution of data systems, one that seems to be the intent of the reporting media as we see the utter absence of Bayer Pharmaceuticals in all of this, whilst there is a growing pool of evidence through documentaries, ad other sources that seem to lose visibility as the media is growing a view of presentations that are skating on the subject, yet until the inquiry becomes an official part we see a lot less than the people are entitled to, so is that another instance of the ethical chapters of the Leveson inquiry? And when this inquiry becomes an actuality, what questions will we see absent or sidelined?

All this gets me back to the Guardian article as we see “The threat to the inquiry comes only a week after May ordered a full investigation into how contaminated blood transfusions infected thousands of people with hepatitis C and HIV“, so how about the events from 2005 onwards? Were they mere pharmaceutical chopped liver? In the linked ‘Theresa May orders contaminated blood scandal inquiry‘ article there was no mention of Factor VIII, Bayer (pharmaceuticals) or Cutter (biological). It seems that we need to give rise that ethical issues have been trampled on, so a mention of “a criminal cover-up on an industrial scale” is not a mere indication; it is an almost given certainty. In all that, as the inquiry will get traction, I wonder how both the current and past governments will be adamant to avoid skating into certain realms of the events (like naming the commercial players), and when we realise this, will there be any justice to the victims, especially when the data systems of those days have been out of time for some time and the legislation on legacy data is pretty much non-existent. When the end balance is given, in (as I personally see it) a requirement of considering to replace whatever Bayer Pharmaceuticals is supplying the UK NHS, I will wonder who will be required to fall on the virtual sword of non-accountability. The mere reason being that when we see (at http://www.annualreport2016.bayer.com/) that Bayer is approaching a revenue of 47 billion (€ 46,769M) in 2016, should there not be a consequence of the players ‘depleting unsellable stock‘ at the expense of thousands of lives? This is another matter that is interestingly absent from the entire UK press cycles. And this is not me just speculating, the sources give clear absence whilst the FDA reports show other levels of failing, it seems that some players forget that lots of data is now globally available which seems to fuel the mention of ‘criminal negligence‘.

So you have a nice day and when you see the next news cycle with bad blood, showing blood bags and making no mention of Factor VIII, or the pharmaceutical players clearly connected to all this, you just wonder who is doing the job for these journalists, because the data as it needed to be shown, was easily found in the most open of UK and US governmental places.

 

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