Help fund leukaemia research

You may remember that before Christmas, Oxford astronomers were selling sky survey plates to help raise money to help save Alexander Thatte, the child of two of their colleagues. Alexander lost his battle in early January. His parents have now decided how they want his life commemorated. They have set up a fund within the University of Oxford that aims to support a 3 year studentship (leading to a DPhil) in research into the causes of childhood leukaemia. If they raise enough money this year, the first studentship could be advertised for the next PhD round.

If you want to contribute, here is the link :

http://www.giving.ox.ac.uk/academic_departments/medical_sciences/reserve/alexander_thatte.html

An even better cause than saving our telescopes !

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24 Responses to Help fund leukaemia research

  1. Oxford astronomers selling stuff to raise money
    to help a sick child? Isn’t leukemia treatment
    paid for by the NHS?

    I’ve heard a few bad things about the NHS, but it
    comes across as OK in Michael Moore’s “Sicko”. I
    know someone in the UK who is chronically ill and
    is waiting for a transplant. He says he can’t
    complain about the NHS at all.

    I had a somewhat similar disease—one of the many
    types of lymphoma—and recovered thanks to
    chemotherapy and a stem-cell transplant. My
    treatment cost far more than I will ever pay into
    the German health-care system, but that is the
    whole idea of insurance. (I’m glad I wasn’t still
    on a soft-money position when it happened, which
    would have been even worse had that been in a
    country where I am not a citizen.)

  2. andyxl says:

    Phillip – I don’t think anyone is complaining about the NHS, but that doesn’t stop anyone doing more to help their loved ones if they can; and funding a research studentship sounds like a good idea doesn’t it ?

  3. I’m not talking about the research studentship. I’m
    referring to “Oxford astronomers were selling sky
    survey plates to help raise money to help save
    Alexander Thatte”. To me, that sounds like his
    chances of survival would have been worse had they not
    raised any money, which in turn implies that the NHS
    was not doing everything it could due to monetary
    constraints. I worked in the UK for two years (at
    Jodrell Bank), but was not ill during that time, so
    I have only minimal experience with the NHS. But it’s
    a simple question: if a child has leukemia in the UK
    (or in general if anyone covered by the NHS is ill),
    will the NHS pay for all possible treatment, or can
    one improve one’s treatment and perhaps even chances
    of survival by providing additional funding oneself?

  4. Michael Merrifield says:

    Hi Andy — Is that link right? For some reason, it falls over from here.

  5. Both links in Andy’s post work for me.

  6. Michael Merrifield says:

    Hmm. Works fine from my phone. Some weird firewall issue maybe. Anyway, problem solved, thank Phillip.

  7. Beep says:

    @Phillip IMHO, no national health care system can possibly approach the sheer cruelty of what we’ve got here in the US. And that’s all I’m going to say about this topic in this comment, or I would start another paragraph and another and never stop until the day I died. Which could be soon enough, thanks to the cruelty hereby noted.

    I am very sorry to learn of Alexander’s death. News reaches me slowly. Sending prayers for his family.

  8. andyxl says:

    Beep : since arriving in the US, I have found it one of the most puzzling things – how the health care system can fail so many people but still cost the taxpayer as much as it does in the UK. Something wrong somewhere. Maybe our heroes Barry and Hillers can finally fix it…

  9. Beep says:

    We pay more per capita than any other country in the world. Between 18,000 – 25,000 Americans per year die due to lack of health care. Many other lives (mine for example) are financially destroyed, sometimes permanently. But all any politician has to say is “socialized medicine” and enough people scream in panic to make sure we continue to dump large sums away into administrative costs, duplicative paperwork, higher prices for medications than that the companies are getting for the meds when they sell to other countries…even if the taxpayers here paid for the R & D…so the people benefiting include the execs of pharmaceutical companies, the heatlh insurance companies, and the politicians who receive a great deal of money from these corporations to fund their campaigns. I don’t know why campaigns have to be so expensive but my guess is the cost of media time. Someone might be able to correct me. Whatever the reason, the cost of campaigns remains a problem, since the tendency turns us more in the direction of plutocracy than democracy.

    Anyway, I’ve been looking for a country that would take me in since my dx in 1985, because my life has been totally wasted here waiting to be allowed to work (part-time at home; all I’m well enough to try) without literally dying for my efforts. I want to work to have even the illusion of a career before I kick the bucket but also because being trapped on disability income is nothing short of punitive. It is possible I would have been better off committing a huge crime and getting food, clothing, shelter, medical care and the rest of my education in prison. Unfortunately my health is too rotten for that to work for me now, or I’d be asking you all what storefront you would like me to smash in 😉

    Oh, now I’ve done it; someone is going to take me seriously and come investigate me! Good, there is a lot of extra chicken soup here and someone has to help me eat it…

    It is going to be very interesting to see what happens to this country if we did have a flu or other major epidemic, since a good portion of the population self-treats and then heads right out to work…unions kind of died years ago and a lot of employees don’t have much or any sick leave. Our emergency rooms are overcrowded now, but they have become the last resort (and the most expensive way possible for our taxpayers) for providing care to people who have found themselves outside of the system.

    One reason I could not vote for Presidential candidate McCain is that one of his health advisers said that the US already has national health care, since anyone can go to a hospital ER (and run up a huge bill, and then have to declare bankruptcy) to get treated. What a brilliant policy that is.

    At least you are at Stanford 🙂 Good care available right there 🙂

    I will get off of the soapbox now! Shut up Beep!

  10. I was born and grew up in the States. One of the
    reasons I moved permanently to Europe was the lack
    of a sensible health-care system in the States. I
    tend to like to live somewhere where I have the
    feeling that society is more or less OK, even if I
    don’t directly benefit from it (and even if I usually
    have less disposable income as a result). In this
    case, however, after two bouts with cancer (starting
    more than 20 years after I moved here), I have
    directly benefited from it.

    One of the more frightening things in the States was
    which pupils decided to become physicians. Most
    weren’t interested in biology or medicine at all; the
    sole motivation was to have a high income. While
    physicians should be paid well, paying too much
    attracts the wrong people. (I remember a 17-year-old
    future medical student being completely flabbergasted
    after a girl farted in Latin class (yes, it was a
    high-class private college-prep school): “I didn’t
    know girls could fart!”.

    Back to my original question: If one has cancer in
    the UK, is all possible treatment covered by the
    NHS, or can one improve one’s treatment by
    contributing one’s own additional funding?

  11. Beep says:

    Phillip, I wish you the very best of health and congratulations on having moved to a place where there is perhaps more of a functioning social safety net than we have here.

    You are the only other person I have heard voice something that I’ve been ranting about since I was a college student…some of my classmates who made it very clear that they were going into medicine in order to make money, having neither an interest in helping patients nor in medical science itself. And I used to say that I would rather have them make less money if that weeded out the ones who were in it for the greed. I encountered some arrogant docs on the tortuous way to my lupus diagnosis and for awhile they were not my favorite members of the population.

    Now after having worked in a medical insurance office (before I was moved to Medicare Part D which is not structured so I can do even a few hours of part time work) I learned that except for top specialists, doctors are being very much squeezed between their actual costs to run a practice and by what insurance companies will decide to pay them (a struggling uninsured self-pay patient is charged far more than what insurance companies pay for an office visit; strange but true) and there seem to be shortages developing as doctors retire early and in other ways leave because they not only cannot get rich, but in some cases can’t make much of a living after taking into account the staff they must hire to deal with the insurance companies and also the money they need to handle their medical school debt. I’m sorry to see some very intelligent and nice docs I know having these problems now.

    What I confess has me laughing is the knowledge that some of the greedy of my generation, torn between becoming a doctor or an attorney in order to make money, decided in the end to go into investment banking. It took a long time but I think that sector of the population has had their greed pretty well exposed now. I for one have been completely unsurprised by the revelations of how far they went, but then again, I remember when they were 20 years old and boasting of their futures.

    Now why didn’t I marry one of them? 😉

    Definitely only joking there; I’m not a good enough actress to have been able to bat my eyes at a narcissist. Of course now that I am an impoverished spinster my mother insists I should have married health insurance when I could have (I had no idea I would be chronically ill for life but 20/20 hindsight is what mothers are for!) and I would show her this video I saw today ( http://blog.hcfama.org/?p=2854 ) except her musical taste is Frank Sinatra.

    I guess I should be telling my nieces to “hook up” with a guy with good health insurance.

    As for me, I was hoping I could get Canada to take me if I claimed political asylum during the Bush administration but I guess things don’t really work that way 🙂

    Hopefully someone knowledgeable about the UK will know the answer to your question about what treatments are covered by the NHS for cancer.

  12. Beep, if you marry someone (or, in some countries
    like Sweden, it’s enough if he’s just your boyfriend)
    from a country with a sensible health-care system and
    live there, then you will be automatically covered.
    No matter what your medical history is, not matter
    whether you work or not, at the same premium as
    everyone else (deducted from your future husband’s
    salary). (In Germany, the amount of deduction is
    the same, no matter how many non-working family
    members one has, i.e. how many children one has and
    whether or not one is married (there is a limit of
    one spouse, though.)

    The only problem would be if you got married ONLY to
    have access to health care, i.e. if the marriage were
    only a formality. But if you’re single and don’t
    care for the U.S. health-care system anyway, why not
    look abroad?

  13. telescoper says:

    Phillip,

    I’m not an expert on cancer treatments in the NHS, but based on my experience with relatives and friends, I’d say the provision is actually very good. It does vary from area to area, however, and it is sometimes necessary for patients to be moved to specialist hospitals, such as the Royal Marsden in Surrey if there isn’t suitable expertise where you are living and the particular condition you have is rare.

    There are in fact only a handful of private cancer treatment hospitals in the UK, and it’s not obvious they provide better treatment than the NHS anyway.

    However, the NHS typically does not provide brand new or experimental treatments which may well only be available abroad. I think this was the case with Alexander Thatte. In such cases, usually as a last resort when standard therapies have failed, people have no alternative but to pay.

    What the NHS generally struggles with is the large number of relatively routine but resource-consuming operations (such as hip replacements) where there is a considerable variation in service levels from area to area. People can (and some do) avoid the waiting times for such things by going private…

  14. andyxl says:

    Just to reformat and confirm the last part of Peter’s reply : the only way the NHS significantly fails people is in the length of queues for specialist treatment – we all know this, and its hard to solve. I went deaf in one ear and it took eighteen months to be seen by a specialist. But hey, it was only one ear, so it wasn’t an emergency.

    Otherwise, people only spend extra money in extreme cases like Alexander’s – where several bone marrow treatments had failed, and the NHS had run out of possibilities, but there was an experimental treatment available elsewhere in the world. The NHS can’t possibly sign blank cheques for treatment from abroad, but sometimes its your last hope.

  15. Michael Merrifield says:

    Just to clarify a little, as unfortunately this issue is currently rather high in my consciousness:

    There are very definitely situations in which the NHS does not cover all proven treatment options for cancer. A few years ago, the Health Service was fought all the way to the Court of Appeal in order to obtain Herceptin for breast cancer treatment. Now this drug has come down enough in price that it is no longer an issue, but the current struggle is over Lapatinib, which slows the progression of terminal cancer significantly, but which costs around £20,000 per year. The National Institute for Health and Clinical Excellence (NICE, would you believe), who are responsible for making such judgements, have ruled the extra year-or-so that the drug buys as non-cost-effective.

    It is pretty clear that such decisions really rest on a power struggle between the NHS trying to keep a lid on its budget and the drug companies (in this latest case, GSK) trying to get the maximum return on their research investment. Eventually, a compromise is reached, but often quite a lot of people have died in the meantime.

  16. Beep says:

    Phillip my dream is to see Europe someday (and work on my family tree as well; I want to leave the info to my little niece.) I keep thinking the money will appear *somehow*! But since it looks like I’m going to miss another one of my college reunions (campus on the east coast, I’m on the west coast)–I missed 10, 20, and now will 25–because I had the flu in March and this month and also fell down some stairs, and the copays for all of that have drowned me in debt.

    Health insurance craziness is starting to affect all kinds of aspects of life here: http://www.nytimes.com/2008/08/13/us/13marriage.html?_r=3&pagewanted=1&hp

    But people are really afraid of “socialism” and “government” and “taxes.”

    I think this is the first time in a long time that the conventional wisdom has had to face up to the fact that government may not be so ethical, but neither necessarily are private corporations…hello, Wall Street…

    and I am so sorry to hear people have died in the UK waiting for cancer treatment. And that Andy had to wait so long for an ear specialist. When folks here hear these stories, they don’t WANT single-payer health care. The reason I think we could do ok if we did go single-payer is that we already spend more than the UK does on health care. We spend more than everyone! How special!

    I don’t have my own story up yet or even half of the links but I finally started this page: http://www.xbeepx.com/Site/Beeps_Health_Care_Reform_Page.html

    Hugs to all

  17. Just to be clear: As comments to my comments pointed
    out, confirming what I have heard myself, the NHS
    in the UK DOES pay for essentially all cancer
    treatment. It might not pay for experimental and/or
    unproven treatment, which I think understandable—most private insurance wouldn’t pay
    for that either. So, if all else has failed, in a
    last-ditch effort some people might pay for some type
    of private treatment the NHS doesn’t cover. My guess
    is that the fraction of such patients who survive
    after such treatment is very small. If all normal
    treatment has failed, the chances of being cured
    by some non-mainstream treatment is very small,
    especially since by this time one will have become
    quite ill.

  18. Michael Merrifield says:

    I am sorry, Phillip, but that just is not true. The drugs to which I referred, Herceptin and Lapatinib, are not experimental or unproven therapies. They are clinically-proven effective treatments for breast cancer. In the case of Herceptin, the 2006 Appeal Court ruling said exactly that, which forced the NHS to make the drug available equally to all patients who would benefit from it; previously it had been fairly random who was prescribed it depending on whether the local NHS trust had enough money in its budget (the so-called post-code lottery). For Lapatinib, you can read NICE’s recent report for yourself, but, to quote from its summary:

    the Committee accepted the estimates of clinical-effectiveness reported in the main lapatinib RCT. However, the Committee did not consider that lapatinib had demonstrated that it was cost effective

    NICE calculates cost-effectiveness of therapies on the basis of cost per QALY (quality-adjusted life year), and the additional cost of this drug, working out at £20K per year, meant that it failed to pass this test when compared to other therapies, notwithstanding its proven greater effectiveness.

    With finite resources, these difficult decisions have to be taken, but let’s not minimize the suffering that such decisions cause by implying that anyone seeking the benefits of such treatments is clutching at unproven straws.

  19. “It might not pay for experimental and/or unproven
    treatment, which I think understandable—most private
    insurance wouldn’t pay for that either. So, if all
    else has failed, in a last-ditch effort some people
    might pay for some type of private treatment the NHS
    doesn’t cover.”

    As far as I know, this is an accurate assessment.
    Your additional information indicates that there are
    some effective but too expensive treatments which the
    NHS will not pay for. I wasn’t referring to your
    comments, though, but rather the child mentioned
    at the beginning of this thread (who presumably did
    not have breast cancer). Sorry for the thread drift.

  20. Mom of Alexander says:

    Well, I wasnt going to enter the debate but now i feel obliged I have to…
    For the record Phillip, there are cases where treatment under the NHS
    can go wrong…
    That was indeed the case of the first transplant our son received in this
    country. And then what does one do? Start a legal battle against NHS or concentrate on helping the child recover and even worse deal with all complications due to ill treatment?

    Its an excellent thing you’ve got your health back but, please, do respect others
    who either lost the battle or are still fighting one!

    • Beep says:

      I am so sorry for your loss. I hope people give generously to the fund set up in his memory and I will be sure to put the url up on my sites.

  21. You can be sure that I have no lack of respect for
    those who haven’t been as lucky. Several of my close
    relatives have had cancer, several have died from it.
    I survived. Although one often hears bad things about
    the health system in Germany, this doesn’t jibe with
    my experience. (I’m not sure why. I don’t disbelieve
    all the bad reports. Perhaps I’ve been lucky to live
    in a region where it’s better, or was just plain
    lucky, or the bad reports were isolated, atypical
    cases.) Having worked in England and having heard
    conflicting things about the NHS, I was curious as to
    what sort of treatment it covers.

    Most contributors to this thread don’t know the
    details of the case which started it. If one goes
    outside the NHS for private treatment, then there
    are several possibilities: the NHS is too slow, the
    NHS doesn’t provide good treatment, the NHS doesn’t
    cover an effective but expensive treatment, the NHS
    doesn’t cover experimental and unproven treatment,
    etc. I had no idea which, if any, are the case.
    I was just curious as to why “Oxford astronomers
    were selling sky survey plates to help save
    Alexander”, i.e. wondering what was the reason why
    money needed to be raised, as opposed to being
    treated by the NHS.

  22. Brenda says:

    Money needs to be raised to research and trial new therapies and to pay for clinical research nurses to treat patients. The NHS doesn’t do this. I’m not sure that any national health insurance does and certainly no private insurance does.
    These two charities http://www.cureleukaemia.co.uk and http://www.geoffthomasfoundation.org raise money to get new treatments and drugs to patiens faster. I know people who are live today because of this work. Both of these charities work within the NHS system to bring in additional resources.

    I, too, am an American and I’ve lived in Germany and the UK. The care I have received in both of these countries has mostly very good and sometimes superb. There is always need for improvment in these kinds of services.

  23. lymphoma says:

    Having suffered from lymphoma, this was good to read. Thanks for this.

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