Sunday, January 24, 2010

A British death panel at work again

Fertility regulators are allowing doctors to screen out embryos that could lead full lives despite having a genetic condition

FERTILITY regulators have triggered a new row over designer babies by allowing doctors to destroy embryos affected by more than 100 genetic conditions, including many illnesses that are not life-threatening. The genetic “defects” that can now be routinely screened out include conditions carried by a number of leading figures, such as Pete Sampras, the tennis champion, and Sergei Rachmaninoff, the Russian concert pianist and composer. In some cases it will mean the elimination of an embryo that has been identified as carrying genetic material inherited from a stricken grandparent, but which may not necessarily develop the same illness.

The Human Fertilisation and Embryology Authority (HFEA), has published a list of 116 inherited conditions that fertility clinics can screen out without requiring special permission. Although many of the conditions can cause gross deformity, protracted pain and premature death, the list also includes illnesses, including cancer and blindness, which can strike late in life after a victim has enjoyed decades of good health.

A number of the conditions are not life-threatening or can be readily treated because of advances in medicine. The disorders include Marfan syndrome, a congenital weakness of connective tissue that can lead to abnormal growth. Among the people thought to have suffered from the illness are Rachmaninoff, who was noted for his large hands, Charles de Gaulle, the French leader, and Abraham Lincoln, the American president.

Another condition that the HFEA allows to be screened out is the blood disorder thalassemia. Sampras, who won 14 Grand Slam singles titles during his career, has a version of the trait that can cause mild anaemia.

Sion Simon, the minister for creative industries, suffers from choroideremia, an inherited form of progressive blindness that is also on the HFEA list. Simon, 41, rarely speaks about the condition, but writing in The Spectator eight years ago, he said: “Being approximately half-blind now, I know perfectly well that the diurnal exigencies of deteriorating vision are no fun. They are tedious. And yet going blind carries a certain prestige that other losses of faculty do not. There are many much worse things.”

The HFEA said it takes into account the age of onset and the variability of physical and intellectual impairment when deciding which genetic conditions can be screened. The unpleasantness of medical treatment available for a given condition is also considered when deciding whether an affected individual will have a worthwhile life.

However, David King, director of Human Genetics Alert, a pressure group, said he was concerned about the use of selection for non-fatal conditions. “It contributes to a social climate in which even minor deviations from ‘normality’ are seen as unacceptable,” he said.

The established procedure for identifying inherited genetic abnormality is to remove one or two cells from an eight-cell embryo three days after fertilisation. The cells are then put through pre-implantation genetic diagnosis (PGD), a search for one or more defective characteristics. Abnormal embryos are discarded, while healthy ones are kept for implantation into the mother’s womb.

The HFEA is now considering adding a further 24 inherited disorders to its list of genetic conditions. Decisions on eight of them are expected this week. They include porphyria, a potentially painful condition caused by overproduction of red blood cell pigment that was linked to the “madness” of George III. Karen Harris, of the British Porphyria Association, said: “I have porphyria, so does one of my three children and so does his child.” Although Harris said she would not have used PGD to select her own children, she would not condemn its use by other families. “If you have lived with someone unable to function and on constant morphine because of the pain, you would take a different view.”

Joyce Harper, co-founder of the PGD centre at University College London, said the selection procedure is expensive and seldom available on the NHS. However, she has agreed to use the technique for a couple who want to ensure their child is not affected by a family gene causing deafness. She admitted: “It’s controversial and it’s going to get more controversial.”


No NHS doctors available -- so British baby dies

No diagnostic tests when the baby was first seen of course. Tests are expensive -- and babies are expendable, apparently!

One of England’s biggest counties has only two GPs on call on some nights to cover a population of more than 600,000. Doctors admit the out-of-hours service in Suffolk is so stretched that it is threatening patient safety. On some occasions, residents have resorted to summoning an ambulance after failing to get hold of a GP.

In one case, a couple whose baby was seriously ill were told to wait up to four hours for a telephone call from a doctor. The nine-month-old boy, who was in fact suffering from meningitis, died later that night.

The GP skeleton service from 11.30pm to 8am is provided by Take Care Now (TCN), a private company that uses foreign doctors to cover some shifts. Three doctors are supposed to provide cover, but one is sometimes replaced by a nurse.

The situation in Suffolk is reflected across rural England, with the number of doctors on call plummeting in the past five years. The pressures on the service are revealed in a new report by the Primary Care Foundation, an independent body, which found that only 16 of the 80 primary care trusts it examined met the target of clinically assessing 90% of urgent calls within 20 minutes.

TCN has been under scrutiny since the death of David Gray, 70, from Manea, Cambridgeshire, in February 2008. Gray died after being given a huge overdose of diamorphine by Daniel Ubani, a German-based doctor who was on his first shift for the company.

TCN won the contract to provide out-of-hours services for NHS Suffolk, the primary care trust, in 2004 after GPs were permitted to opt out of providing round-the-clock care. The NHS trust covers the entire county, apart from one surgery that did not opt out and the Waveney district, which is covered by a separate trust.

Other out-of-hours providers in England also provide a skeleton night staff compared with the 1990s. However, GPs have written to the trust, complaining that patient safety could be at risk. Dr Claire Giles, chairwoman of Suffolk’s Local Medical Committee, which represents GPs, said: “The patches covered by these doctors have got bigger and bigger as the funding has been cut.”

TCN says most people are satisfied with its services and it hits all the NHS’s out-of-hours targets. But residents say the targets fail to reflect the delays in the system.

One couple, Mark and Jennifer Smith, from Kesgrave, Ipswich, lost their nine-month-old son to meningitis after being told they faced a wait of up to four hours to speak to an out-of-hours doctor. The couple visited an out-of-hours clinic at the Riverside centre in Ipswich at about 6pm on Saturday, March 14, last year with their sick baby, Taylor. The doctor there told them he was suffering from a bug.

When Taylor awoke at 2am that night with a bright rash, the couple telephoned NHS Direct and were told they would have to wait up to four hours for the doctor to call back. At 5am, the out-of-hours doctor rang and the Smiths explained the symptoms. Clearly concerned, the doctor advised the couple to check the baby. It was too late, however — their son had died of the blood poisoning that accompanies meningitis. “Our beautiful little boy had gone,” said Mark Smith.

He said the family had been failed by the NHS during the night. “It should not take four hours to get a call back from a doctor when you have a sick baby.”

Other residents say they have been forced to call ambulances rather than wait for an out-of-hours GP.

TCN, which is being investigated by the Care Quality Commission, had its contract with NHS Cambridgeshire terminated last November. It is also being replaced by a new out-of-hours service in Suffolk in April. The company is, however, defended by some GPs who say it is underfunded and that its problems are shared by similar providers.

NHS Suffolk said: “We are continually monitoring patient safety and experience and will continue to do so.” [Blah! blah!]


Dems mull options for health care bill

President Barack Obama and Democratic leaders insist they will push ahead with efforts to overhaul the U.S. health care system despite losing undisputed control of the Senate. They just haven't decided what it will look like or how they will pass it. In fact, they aren't explaining much.

A senior Democratic aide said Saturday that House and Senate leaders are considering changes to the health care bill passed by the Senate that could make it acceptable to the House. Under one scenario, Democratic senators would make the agreed-upon fixes using a special budget procedure that requires only 51 votes to overcome Republican delaying tactics. The House would then pass the Senate bill, sending it to Obama for his signature and allowing the health care remake to become law.

But the aide, who described the discussions on condition of anonymity because of the sensitivity of the issue, said no decisions have been made. The strategy would be politically risky because it would enrage Republicans, and the legislation itself lacks strong public support.

Obama acknowledges running into a "bit of a buzz saw" of opposition. A top Democrat suggested that Congress slow down on health care, a sign of eroding political will in the wake of a Republican's upset victory in the Massachusetts Senate race Tuesday.

Democratic Sen. Chris Dodd of Connecticut, who got health legislation through the Senate's health committee last year after the death of his friend, Sen. Edward M. Kennedy, said Obama and lawmakers could "maybe take a breather for a month, six weeks."

Just a week ago the health legislation had appeared on the cusp of passage after Obama threw himself into marathon negotiations with congressional leaders to work out differences between the separate health care reform bills passed by the House and Senate. "There are things that have to get done. This is our best chance to do it. We can't keep on putting this off," Obama said Friday at a town hall meeting in Elyria, Ohio. "I am not going to walk away just because it's hard," the president said.

Obama seemed to pull back from a suggestion he made Wednesday that lawmakers unite behind the elements of the legislation everyone can agree on. Obama said scaling back health care presented problems because some of the popular ideas, such as banning denial of coverage to people with medical problems, can't be done unless most Americans are insured. "A lot of these insurance reforms are connected to some other things we have to do to make sure that everybody has some access to coverage," he said. For example, insurers wouldn't be able to end the practice of denying coverage to people with health conditions unless more people were covered. Otherwise people could wait until they got sick to buy insurance and premiums could skyrocket.

Obama has used immense political capital to advance the health care overhaul and remake a system that has frustrated past administrations, most recently Democrat Bill Clinton's in 1994. Whether he can succeed where others have failed is now unclear. "Here's the good news. We've gotten pretty far down the road, but I have to admit, we had a little bit of a buzz saw this week," the president said.

Despite Dodd's suggestion that Democrats take a breather, both House Speaker Nancy Pelosi and Senate Majority Leader Harry Reid insist the health care legislation will go forward. They just haven't said how.

The changes under discussion to the Senate bill would reflect agreements leaders of both chambers made during negotiations at the White House two weeks ago. That includes weakening the Senate bill's tax on high-cost insurance plans, opposed by labor unions and considered a nonstarter in the House. Closing gaps in prescription drug coverage for the elderly is also under consideration.

One potential approach could allow the Senate to act with a simple majority instead of the 60-vote total Democrats now lack with the election of Republican Scott Brown in Massachusetts. A supermajority of 60 votes is needed to overcome Republican filibusters -- a legislative procedure that blocks measures from coming up for a final vote.

But House Republican leader John Boehner said the election of Scott Brown in Massachusetts has sent a loud warning to Democrats -- cease and desist on health care overhaul. "For the better part of those nine months, Democrats in Washington have been focused on this government takeover of health care that working families just can't afford and want nothing to do with," Boehner said in his party's radio and Internet address Saturday.

Obama has made fixing a broken health care system the top domestic policy priority of his first term, but has faced solid opposition from the Republican minority. Despite assurances from Obama and his administration, opposition to his plans have grown among people who bought into allegations of higher taxes, unbearable government deficits and serious government meddling in health care.

The United States is the only industrialized country without a version of universal health care. Americans get their health insurance mainly through their employers, with government programs to cover mainly retirees, military veterans and members of Native American tribes. Forty million to 50 million Americans are uninsured and get medical care largely through hospital emergency rooms.


Obamacare Will Decrease the Deficit? Yeah, Right!

The vote looming in the Senate to raise the debt limit should serve as a wake-up call that federal spending is out of control. Instead, Democratic leadership has tried to convince Americans that passing costly health care legislation is not only sensible, but requisite, and must be done now.

Neither is true. The bills use weak spending limits, weak tax provisions, and even weaker cuts to current spending to pay for reform. Democrats claim these provisions mean that the massive health bill will not only be paid for, but will decrease the federal deficit. In a recent testimony to the House Budget Committee, health care expert James Capretta outlines why this is contrary to Obamacare’s more likely fiscal future.

Weak Cost Control on New Entitlements. Both bills increase coverage by expanding Medicaid or offering subsidies to purchase insurance on the exchange. Lavish subsidies will be available to those who do not qualify for Medicaid but make under 400 percent the Federal Poverty Level. While 127 million Americans fall in this category, only 18 million are projected to receive the subsidy, due to a “firewall” to prevent those who are offered employer-sponsored coverage from receiving it. This creates gross inequity within income brackets. As is the way with Congress, lawmakers will likely give in to taxpayer pressure down the road to extend the subsidies and eliminate the inequity. Expanding this entitlement will cost billions, adding to the deficit.

The bills create another new entitlement via the CLASS Act, which provides community living assistance. Beneficiaries would pay premiums but would not receive benefits until years later, thus creating one-time savings at the programs onset. Obviously, years down the road this spending cushion would deteriorate, and the program would become insolvent. This is not accounted for in ten year cost projections.

Weak and Unpopular New Taxes. The Senate bill is paid for with a 40 percent excise tax on high-cost insurance plans. This provision is to deter Americans from purchasing unnecessarily extravagant health plans, but it is also responsible for about half of the revenue used to pay for the bill. This tax is widely unpopular, and Washington has already begun and will likely continue to carve out favored constituencies who balk at this tax. Union members have already been exempt through 2017, which eliminates 40 percent of expected revenue from this tax.

Presumed Cuts to Medicare. Finally, both bills are largely paid for by cuts to Medicare of approximately half a trillion dollars. These cuts will presumably be made to payment rates for certain care providers by decreasing inflation updates. The expectation that this will actually occur is almost laughable. At the same time that lawmakers are proposing to pay for health care form using cuts to Medicare, they are trying to pass the “doc fix” legislation to end cuts to Medicare that were enacted to—you guessed it—contain costs. Every year, Congress is supposed to decrease physician payment rates in order to control Medicare spending. And every year, Congress votes to suspend the doctors’ payment decrease due to pressure from the industry. The House recently passed legislation that would get rid of the payment cuts for good. And yet without blinking an eye, they propose to use the same failed method to pay for health care reform.

These cuts to Medicare are even more unlikely considering their full impact. As Capretta points out, “The Chief Actuary of the Medicare program has warned that these arbitrary reductions could have serious consequences for beneficiaries’ access to care, as [they] would push about one out of every five hospital facilities into insolvency.”

The House and Senate bills received positive cost estimates by the Congressional Budget Office based on these weak spending controls and the fact that the CBO analysis looks at the first ten year window, which for both bills, includes ten years of raising revenue, but only six years of spending. The country is facing a fiscal crisis as the population faces a demographic transformation of 30 million citizens entering old age within the next twenty years, Capretta points out. Lawmakers need to acknowledge the precariousness of America’s fiscal future and be honest about the true cost of Obamacare.


Obama hunkers down as health care falters

The loss of their 60th Senate seat on Tuesday night in Massachusetts struck fear into Democrats. The president, who two weeks ago was driving deals to settle disagreements among House and Senate Democrats, sent mixed signals this past week that betrayed a lack of certainty about his intentions. Old divisions resurfaced, leaving Democrats confused and frustrated.

Obama on Friday sought to recover his equilibrium. "I didn't take this on to score political points," a defiant Obama told workers in recession-weary Ohio. "And I'm not going to walk away just because it's hard. We're going to keep on working to get this done _ with Democrats, I hope with Republicans _ anybody who's willing to step up."

Step up. That's what some Democratic lawmakers are saying Obama needs to do. "I think he has got to get even more deeply involved," said Rep. Elijah Cummings, D-Md. "He's a key factor and we have to see exactly to what degree he wants to play that role." "He has the ability to bring us all together," said Sen. Christopher Dodd, D-Conn., one of the negotiators in recent White House talks. "He did that ... to try to resolve the differences between the House and Senate. Again, it's going to take that kind of leadership." ....

Lawmakers came to work Wednesday morning facing a new reality. Democrats no longer had the votes in the Senate to keep Republicans from blocking the health care bill, and the rest of Obama's agenda. With the loss of Kennedy's seat, Obama seemed to retreat _ and stumble. In an interview with ABC News, the president who only days before had been functioning as nightshift foreman of the health care talks said it wasn't his role to delve into the details of legislative strategy. He suggested lawmakers might want to regroup around a smaller package of popular measures.

With House Speaker Nancy Pelosi, D-Calif., trying to gauge support for passing the Senate's bill, Obama's candor unnerved White House aides, who scrambled to reinterpret their boss' remarks. It was no use. After meeting with Democratic lawmakers Thursday morning, Pelosi delivered the news that she didn't have the votes to pass the Senate bill.

Suddenly every Democrat had his or her own idea about what to do next. Some wanted to move on, noting that jobs and the economy are more important to voters than health care. Many called for scaling back the bills to more manageable and understandable dimensions. Some demanded a heroic attempt to enact comprehensive changes.

Not two weeks ago, Pelosi was close to a final handshake with Senate Majority Leader Harry Reid, D-Nev. By Thursday, she dismissed the Senate bill as a nonstarter tainted by backroom deals. Reid complained that the House doesn't listen to him. Pelosi huffed that the House, unlike the Senate, doesn't have surprise elections.

By Friday, Obama was back to arguing that comprehensive health care legislation remains the best route for the nation.

Democrats are now in a self-imposed cooling off period of uncertain duration. No decisions have been made on how to salvage health care.

More here

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