Tuesday, May 5, 2009

What Happens When Bureaucrats Make Health Care Decisions

In light of comments by many Democrats—including President Obama—that a government-run health plan may end up controlling the ability to limit access to life-saving treatments, we have compiled anecdotes from other countries showing the effects of government bureaucrats making personalized health decisions on patients’ behalf.

“The chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here….There is going to have to be a very difficult democratic conversation that takes place.”

 — President Obama, interview with The New York Times

Patients Cannot Obtain Life-Saving Treatments

  • Bruce Hardy, a patient living outside London, suffers from kidney and lung cancer, for which his physician prescribed the new drug Sutent.  But as a profile in the New York Times pointed out, “If the Hardys lived in the United States or just about any European country other than Britain, Mr. Hardy would most likely get the drug.”  However, in Britain, Sutent’s $54,000 price means “Mr. Hardy’s life is not worth prolonging.”  As his wife stated, “It’s hard to know that there is something out there that could help but they’re saying you can’t have it because of cost.  What price is life?”
  • Sarah Anderson, an ophthalmologist who works for Britain’s National Health Service (NHS), published an article last spring titled “How the NHS Is Letting My Father Die.”  Her father’s kidney tumor could be treated by a new drug—but while the pharmaceutical has been approved for use in Europe for two years, Britain’s National Institute for Clinical Effectiveness (NICE) delayed its assessment of the drug’s usefulness.  Until NICE renders its judgment, local NHS branches can refuse to provide the drug, leaving Anderson’s family to pay for their father’s treatment on their own, or face the inevitable consequences that will follow if he cannot obtain it.  Anderson’s ultimate verdict on her family’s dilemma is a sobering one: “If Dad should lose his life to cancer, it would be devastating—but to lose his life to bureaucracy would be far, far worse.”
  • Ian Dobbin, a patient in Yorkshire, faced a difficult dilemma—because the NHS wouldn’t pay for his life-saving cancer treatment, he needed to pay £25,000 to obtain the treatment and survive.  He said the NHS’ decision “is a death sentence for me. I feel absolutely gutted because there is no way I can find that sort of money.  My life is dependent on getting this drug and without it I will die. I am totally devastated.  I’ve been paying my national insurance all my life and when it comes to the point that I need it to keep me alive, they are not prepared to help. I don’t really know what to do. My consultant is appealing the decision and I’m just praying that they change their minds.”
  • In 2006, Ann Marie Rogers filed a ground-breaking lawsuit in Britain, seeking to force her local NHS bureaucracy to pay for the breast cancer drug Herceptin—“which has been shown to halt the spread of the cancer.”  In a public interview, she expressed her outrage at the bureaucracy that forced her to file a lawsuit in order to access a life-saving treatment: “It makes me so angry that these trusts are playing God, saying ‘you can’t have this, you can’t have that.’ They’ve got no right to decide who can have this life-saving drug. This is not a poor country, after all. I have worked all my life and paid my taxes. It makes me sick to think a lot of women are in my position.”
  • Pamela Smith, a patient with advanced bowel cancer, had her appeal for treatment denied by her local NHS trust in 2007—the drug (Erbitux) is widely available in the United States, but in Britain, the government refused to pay for the treatment.  As a result, Ms. Smith had to spend her life savings to obtain the drug privately.  Her son expressed anger at the NHS’ decision to deny care: “My mum now has no money left so she will have to rely on the family.  What makes the appeal result a disgrace is that she is responding to the treatment.”
  • In Alberta, Bill Murray was denied hip resurfacing surgery that generates better results than a traditional hip replacement—because the Canadian government said the 57-year-old was “too old” to benefit from the state-of-the-art procedure.

Physicians Cannot Treat their Patients

  • A study released last August found that one quarter of cancer specialists are deliberately keeping their patients “in the dark” about available treatment options—in order to avoid upsetting those patients when they find out the NHS will not pay for their treatments.
  • Warpreet Husan, a colon cancer specialist, stated that bureaucracy compels his colleagues’ silence: “A lot of my colleagues also face pressure from managers not to tell patients about new drugs. There is nothing in writing, but telling patients opens up a Pandora’s box for a health service trying to contain costs.”
  • One cancer patient undergoing treatment confirmed that doctors are keeping their patients uninformed about potentially life-saving—but overly costly—treatments: “My consultant never told me about the latest treatments. I don’t know why he hasn’t said anything. I’m a little concerned.”
  • Another physician, Dr. Sarah Jarvis, wrote an anguished op-ed condemning government-run health bureaucracy entitled “Sentenced to Death by NICE.”  “Recently I was left feeling furious and frustrated after a visit from a patient called Peter. He’d just had a serious heart attack and my job as a GP [general practitioner] was to reduce his very high risk of having another.  I knew what the latest research told me was the best way, but I had just basically been forbidden to use it by an official email from the Department of Health.”

Patients Cannot Use their Own Money to Pay for Care

  • Until last November, patients in Britain who paid for unapproved drugs out-of-pocket had to renounce all future NHS care—an effective prohibition on patients using their own money to pay for care.  The Government reversed its position on “top-up payments” within the NHS, but not before stakeholders called the policy “despicable,” “appalling,” “uncivilised,” “spiteful,” “cruel,” “abhorrent,” “perverse,” “inhuman,” and “unjust”—even though most stakeholders agreed that some form of rationing within the NHS was inevitable.
  • In Canada, Lindsay McCreith filed suit against Ontario’s government-run health care system, claiming that the Canadian government’s ban on patients paying for private care violates his fundamental freedoms.  Mr. McCreith was forced to travel to the United States for an MRI to diagnose a malignant growth in his brain—and then, when the Canadian government offered him a months-long wait to treat his brain tumor, to travel back to Buffalo for life-saving surgery, as patients cannot pay for treatments with their own money in much of Canada.