My Mom Would Be Going Blind in England

Several new drugs have reversed my mom's macular degeneration, and are such a wonder that she is even willing to tolerate frequent injections into her eyeball, a concept that gives the rest of our family the willies.  Forget about it in England, though, where National Institute for Health and Clinical Excellence (NICE), which Obama wants to emulate in the US, does not allow these drugs:

3. In 2007, NICE restricted access to two drugs for macular degeneration, a cause of blindness. The drug Macugen was blocked outright. The other, Lucentis, was limited to a particular category of individuals with the disease, restricting it to about one in five sufferers. Even then, the drug was only approved for use in one eye, meaning those lucky enough to get it would still go blind in the other.

And by the way, is NICE an Orwellian name or what?

Postscript: Fortunately, we are unlikely to have a system that bans Americans from spending their own money on things the plan will not buy  (a bit of socialist egalitarianism that is practiced in a number of European countries).  Not for lack of trying by many Democrats, however.

  • Micah

    Not just Europe.

    I read an article about the same thing happening in Canada a year or so ago.

  • http://threestooges.net Rob

    >> And by the way, is NICE an Orwellian name or what?<<

    Every time I see a reference to it I think of C.S. Lewis's "That Hideous Strength" (the third book in his "Space" trilogy,) where it stood for the "National Institute for Coordinated Experiments." Just as evil, though. ;-D

  • Mallard

    Not to mention they dropped the 'H' in Health to force this acronym out.

  • http://nomayo.mu.nu Stephen Macklin

    I think your postscript may be overly optimistic. Between the taxes to pay for it all, and the higher costs providers would have to charge private payers to recover losses from government price limits, there will be very few who will be able to afford paying for private health care.

  • http://www.ilovebenefits.wordpress.com ilovebenefits

    Check out the health care debate at http://www.ilovebenefits.wordpress.com
    There a few articles there comparing US health care to Canada and to the UK.

  • Doug

    Allow me to wander a bit off topic before I wander back on. My mother had her 3rd Lucentis (from Genentech) injection this week (a shot to the eye, which sounds horrible but Mom assures me it's painless). In the course of two months, her wet macular degeneration has actually been reversed. Her 20/400 vision has been rolled back to 20/100. The bleeding in the eyeball has stopped, and is even healing. And she's not even done yet. What used to be an untreatable disease is now treatable, albeit at $2k/shot. Not all Lucentis patients have the same exceptional results as my mother, but almost all are able to stop the MD in its tracks. Ten years ago, this was unthinkable.

    Now back to the topic: to think that she, or even I, might be denied miracle drugs like Lucentis is enough to make me want to take up arms to fight anyone who would tell me otherwise. Not to mention the chilling effect that this stupid government "overhaul" will have on any and all new drug development. Lucentis is unquestionably an expensive drug, but what price would any of us pay to prevent his own blindness? For me, the sky's the limit.

    Let's project forward and try to imagine a world where the democrats get their way, and smother the healthcare system with their caring concern. Pick a favorite disease, such as AIDS, and ask yourself if you're Genentech, would you continue pouring billions into AIDS research only to find out that the government is going to prevent you from recovering your development costs, limit its sale in the name of "cost control," and fix the price you need to charge? How can any powerful high-tech drug be developed with such prohibitive restrictions?

    In the name of "fairness" for what, 3% of the U.S. population?, EVERYONE'S well-being will be sacrificed. Like the Canadians, you will be "covered" but you will receive little treatment and there will be no miracle drugs at your disposal. This is as insane as the old Soviet Union where everyone made a decent living but there were no goods on the shelves to buy. Rich AND hungry ... sign me up!

    This isn't just stupid. It's criminal!

  • rxc

    Doug,

    The new helthcare program will not limit access to AIDS medications, because that would arose political forces that are friends of the left and the New Healthcare. Instead, they will limit access to drugs like Lucentis that don't have a wide, politically active base. The analysis will consider how old these people are and how much they "contribute to society", and will decide that the only need one eye, at most to avoid becoming a drain on society.

    The whole goal of this leftist/green shared vision is to get rid of a LOT of people who do not/cannot contribute the way they want them to. They started with banning DDT, "to deal with all those little brown people" (I think that is a direct quote). Eventually they will come after you and me, as well.

  • Current

    If the patient goes private though then they can get this drug, as any sensible person who lives in the UK does. Which is what I did when I lived there.

  • ParatrooperJJ

    Actually the current system blocks some private pay patients. If a provider accepts a private payment from a medicare eligible patient, they are banned from billing medicare for two years.

  • Anon

    Partrooper:

    I've been searching for references that show the restrictions on patients and providers re: Medicare (e.g., what happens if you try to pay your doctor for proceedures that aren't covered by Medicare).

    Do you have those handy?

    Thanks.

  • Anon

    Current,

    True -- but I thought the infamous breast cancer patient would have been forced to pay for *all* her medical care re: her breast cancer, not just the additional treatment.

    in other words, sure, pay the $$$ for your drug, and also get a bill for all the other services rendered.

  • Jim Collins

    Funny that you should mention Orwell when discussing this. Does anybody remember the cancer patient in Oregon recieving the assisted suicide brochure from his State's medical assistance office a few years ago? This is where we are heading.

  • CT_Yankee

    Doug said "This is as insane as the old Soviet Union where everyone made a decent living but there were no goods on the shelves to buy."

    My wife grew up in the Worker's Paradise, where her standard of living as the second level director of a large grade school was well below my leanest period as I worked my way through college.

    A couple years ago when her uncle experianced some form of breathing difficulties, he was denied an ambulance because they said he was too old. This was in Russia, where you might know someone who has a car, however you don't have one available to you to just drive to the hospital yourself. A relative who was a retired nurse went to help him out.

    After her first examination, my wife's American dentist claimed he would lose his licence if he did work like he found. She wanted to know if she must bring gloves and a towel to her first American gynocolagist visit, because in Russia if you don't you get bare hands and sit your bare but directly on the same examining table as half the town (very sanitary).

    Why limit our goal to socialized healthcare when we could set our sights all the way to witch doctor?

  • Methinks

    CT_Yankee,

    Your wife and I are both from the workers paradise. Lucky for me, I spent years in and out of Soviet hospitals. Even though I was just a child and an ambulance was called and arrived because my asthma caused me to stop breathing entirely, the technicians refused to give me an adrenaline shot or take me to the hospital until a bribe was paid. Doctors refused to perform procedures until a bribe was paid. Thank God Russia removed the profit motive from medicine, eh? And the only reason I had access to good doctors and hospitals where the toilets didn't regularly overflow (covering the floor with an inch of water and feces) is because my family was connected. Still, that wasn't enough to scare up enough LOCAL anesthesia to numb me for the entirety of my adenoidectomy when I was 4 years old.

    My great aunt was a GYN. She mostly performed surgery under conditions that make 19th century military field hospitals seem downright cushy and sanitary. Is it any wonder, then, that Russians mainly relied on folk medicine like peeing on everything? Stye in your eye? Urine compress. Burned your finger? Pee on it. Western doctors were horrified when they were able to visit after the collapse.

    Fortunately, we are unlikely to have a system that bans Americans from spending their own money on things the plan will not buy...

    It's getting more likely every day.

  • tomw

    At $2k per shot, it is cheap. Think of the 'assisted living' costs that would be avoided, at $300-500/day. Sometimes, the stubborn, self-willed, blind stupidity of bureaucrats really is offensive.[being polite]
    If the Monarch had the disease, would she only get treated after the first eye had been blinded?
    Can't wait to see the results of the bill intro'd to force all Government employees, repeat ALL, to sign a pledge that they would have exactly the same health care and educational opportunities available to their constituents. "eat your own dogfood" is the phrase that comes to mind.

    tom

  • CTD

    Coyote,

    I'm much more cynical than you with regard to your postscript. Sure, initially you'll still be able to buy whatever care you want. But how long before the usual suspects start carping about the "unfairness" of a "two-tiered" system? It's all part of the plan. They'll get a foot in the door with whatever is politically doable, then use that as a base for expanding on the margins.