Rationing of Health Care Resources leaves those with Rare Diseases without Treatment in NHS

Posted by PITHOCRATES - October 21st, 2012

Week in Review

So you think Obamacare care will provide everyone the same level of high quality health care?  Think again.  Or take a look at the UK.  For even though the UK has national health care under the NHS everyone still does not receive equal health care treatment.  Especially those with rare diseases that will be costly to treat (see Patients with rare conditions face postcode lottery by Denis Campbell posted 10/20/2012 on the guardian).

Seriously ill patients with life-threatening rare diseases are being denied vital drugs because of a postcode lottery across the NHS that campaigners say is frustrating and unfair.

New research reveals that patients with a rare condition have much less chance of accessing “orphan” medication if they live in England rather than Scotland or Wales. “Orphan” drugs treat patients with a condition affecting fewer than five in 10,000 people.

While the European Medicines Agency (EMA) has approved 68 drugs for use with patients with rare conditions such as unusual forms of cancer and epilepsy since 2000, the National Institute for Health and Clinical Excellence (Nice) has assessed only 18 of them, recommending that seven become available on the NHS in England and Wales, and another five under certain restrictions…

Nice insisted the low number of such drugs it had examined was due to a lack of referrals from the Department of Health, as it can only assess the cost effectiveness of medications which ministers there ask them to look at.

But the DoH denied patients with rare conditions were missing out and insisted that the absence of a Nice appraisal should not stop them getting what they need. “There is no evidence of a ‘postcode lottery’ in access to these drugs”, said a spokesman.

First of all why do they have a government agency (Nice) even doing this?  One reason.  Costs.  So they must ration their limited health care resources.  For if they just give anyone life-saving medications regardless of costs it will limit what other treatments the NHS can provide.  Costs are real.  Just because you have a national health care system doesn’t make them go away.  Of course, in a national health care system costs take on a whole new meaning.  For they fund health care with tax dollars.  Tax dollars controlled by bureaucrats, not health care professionals.  So instead of a doctor deciding what’s best for the patient (as it is in America until Obamacare fully kicks in) a doctor must balance doing what’s best for the patient with what’s best for the state.  For spending too much money on someone who is just going to die in a short period of time is just not an efficient use of tax dollars.

Yeah, no doubt you’re thinking about that ominous phrase some say they included in Obamacare but they did not call out by name.  Death panels.  Where some government bureaucrat (or a panel of bureaucrats) makes life or death decisions in determining a patient’s care.  Not by consulting with the patient’s doctor but by consulting a table of acceptable health care treatments for someone based on the expected return of that health care investment.  They may not call these death panels but if the expected return on the health care investment does not meet the minimum acceptable return for that investment then the patient doesn’t get that life-sustaining treatment.  And will die.

So what can we expect in the future of Obamacare?  Well, it will probably have something like Nice.  A panel that makes decisions with assumptions and math like this (see Measuring effectiveness and cost effectiveness: the QALY from the Nice website).

Having used the QALY measurement to compare how much someone’s life can be extended and improved, we then consider cost effectiveness – that is, how much the drug or treatment costs per QALY. This is the cost of using the drugs to provide a year of the best quality of life available – it could be one person receiving one QALY, but is more likely to be a number of people receiving a proportion of a QALY – for example 20 people receiving 0.05 of a QALY.

Cost effectiveness is expressed as ‘£ per QALY’.

Each drug is considered on a case-by-case basis. Generally, however, if a treatment costs more than £20,000-30,000 per QALY, then it would not be considered cost effective.

How a QALY is calculated

Patient x has a serious, life-threatening condition.

•If he continues receiving standard treatment he will live for 1 year and his quality of life will be 0.4 (0 or below = worst possible health, 1= best possible health)

•If he receives the new drug he will live for 1 year 3 months (1.25 years), with a quality of life of 0.6.

The new treatment is compared with standard care in terms of the QALYs gained:

•Standard treatment: 1 (year’s extra life) x 0.4 = 0.4 QALY

•New treatment: 1.25 (1 year, 3 months extra life) x 0.6 = 0.75 QALY

Therefore, the new treatment leads to 0.35 additional QALYs (that is: 0.75 -0.4 QALY = 0.35 QALYs).

•The cost of the new drug is assumed to be £10,000, standard treatment costs £3000.

The difference in treatment costs (£7000) is divided by the QALYs gained (0.35) to calculate the cost per QALY. So the new treatment would cost £20,000 per QALY.

During an ABC News’ June 24 special, Questions for the President: Prescription for America, there was the following exchange (see Lungren says Obama would have government require a centenarian to get a pill, not a pacemaker posted 7/28/2009 on PolitiFact):

The exchange began when Sawyer introduced Jane Sturm, who takes care of her mother, Hazel, now 105. When Hazel was 100, Sturm said, the doctor told her she needed a pacemaker. Both mother and daughter said they were game, but an arrhythmia specialist initially said no, before seeing Hazel’s “joy of life” in person.

Sturm asked the president, “Outside the medical criteria for prolonging life for somebody elderly, is there any consideration that can be given for a certain spirit, a certain joy of living, quality of life? Or is it just a medical cutoff at a certain age?”

After joking that he’d like to meet Sturm’s mother and “find out what she’s eating,” the president said, “I don’t think that we can make judgments based on peoples’ spirit. That would be a pretty subjective decision to be making. I think we have to have rules that say that we are going to provide good, quality care for all people…”

Obama continued, “And all we’re suggesting — and we’re not going to solve every difficult problem in terms of end-of-life care. A lot of that is going to have to be, we as a culture and as a society starting to make better decisions within our own families and for ourselves. But what we can do is make sure that at least some of the waste that exists in the system that’s not making anybody’s mom better, that is loading up on additional tests or additional drugs that the evidence shows is not necessarily going to improve care, that at least we can let doctors know and your mom know that, you know what? Maybe this isn’t going to help. Maybe you’re better off not having the surgery, but taking the painkiller. And those kinds of decisions between doctors and patients, and making sure that our incentives are not preventing those good decisions, and that — that doctors and hospitals all are aligned for patient care, that’s something we can achieve.”

This is the kind of information Nice provides.  Cool, calm, bureaucratic number crunching to determine what the proper medical treatment should be.  Balancing those two factors.  What’s best for the patient.  And what’s best for the state.  For spending too much money on someone who is just going to die in a short period of time is just not an efficient use of tax dollars.

So what can you expect from Obamacare when it’s your mother or grandmother in the hospital desperately needing treatment?  Well, the doctor may come out to the waiting room where you’re sitting scared and distraught and say, “I’m sorry.  But the National Health Efficiency Board has calculated your loved one’s quality-adjusted life years.  Or what we in the health biz call QALYs.  Sadly, her treatment would only result in a net gain of 0.18 additional QALYs.  While our guidelines clearly state that this number shall not be less than 0.22 for such an investment of health care resources.  I am truly sorry for your soon to be loss.  So here’s a prescription you can fill on your way out for a pill to manage her pain until she dies.  Thank you and good day.  Next!”

This is the problem when someone else pays your bills.  That someone else has a say in your treatment.  Whether they are called death panels or not.

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