Monday, December 6, 2010

is this acceptable? Arizona refuses to pay for medicaid patients' transplants

Arizona Medicaid Cuts Seen as a Sign of the Times
Published: December 4, 2010

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With enrollments exploding, revenues shrinking and the low-hanging fruit plucked long ago, virtually every state has had to make painful cuts to its Medicaid program during the economic downturn.

Mounting State Debts Stoke Fears of a Looming Crisis (December 5, 2010)

What distinguishes the reductions recently imposed in Arizona, where coverage was eliminated on Oct. 1 for certain transplants of the heart, liver, lung, pancreas and bone marrow, is the decision to stop paying for treatments urgently needed to ward off death.

The cuts in transplant coverage, which could deny organs to 100 adults currently on the transplant list, are testament to both the severity of fiscal pressures on the states and the particular bloodlessness of budget-cutting in Arizona.

“It’s a real sign of the times,” said Alan Weil, executive director of the National Academy for State Health Policy. “And I think this is a precursor to a much larger number of states having this discussion.”

Policy choices with such life-threatening implications are all the more striking given the partisan framing of the health debate.

Republicans have argued that the new health law will lead to rationing, warning even of “death panels.” Democrats have responded that care is already rationed, with 50 million people going largely without insurance, and that the law will bring greater equity.

The Arizona case, said Diane Rowland, director of the Kaiser Commission on Medicaid and the Uninsured, “is a classic example of making decisions based not on medical need but based on a budget.” And, she added, “it results, potentially, in denial of care to individuals in a life-or-death situation.”

The federal Centers for Medicare and Medicaid Services do not monitor which states use Medicaid money for transplants. But health experts said no other state had withdrawn coverage for patients pursuing transplants.

Arizona’s decision, by Gov. Jan Brewer, a Republican, and the Republican-controlled Legislature, was made after state officials assessed success and survival rates for a number of transplant procedures. National transplant groups call the figures misleading.

“It seems inappropriate that life-saving care has the potential to be withheld based solely on budgetary issues and the bureaucratic determination of relative benefits,” said Dr. Robert S. Gaston, president-elect of the American Society of Transplantation.

There is usually a long-term consequence to short-term cuts in safety-net programs like Medicaid, which insures low-income Americans and is financed by state and federal governments.

When payments to doctors are cut, fewer providers are willing to treat Medicaid patients. When eligibility levels are lowered, more people are left to seek charity care in emergency rooms. When optional benefits like dental services and prescription drugs are eliminated, conditions worsen until they require more expensive care.

But no other state in recent memory has made such a numbers-driven calculation pitting the potential loss of life against modest savings.

Jennifer Carusetta, the legislative liaison for Arizona’s Medicaid agency, said the transplant cuts would save a mere $800,000 in the current fiscal year, and only $1.4 million for a full year.

The cuts were imposed in an effort to close a $2.6 billion shortfall in the state’s $8.9 billion budget for this year.

The options available to states for cutting Medicaid have been limited because the federal stimulus package and the health care law have required them to maintain eligibility levels. That has left states to cut payments to providers and trim benefits not required by federal regulations.

Many states, including Arizona, have done both. A September report by the Kaiser Family Foundation found that 39 states cut provider payments and 20 cut optional benefits in their 2010 fiscal years, with similar numbers planning to do so in 2011.

Arizona reduced Medicaid payments to doctors by 5 percent last year and has frozen payments to hospitals and nursing homes for two years. All providers will undergo another 5 percent cut on April 1, Ms. Carusetta said.

This year, Arizona became the only state to eliminate its Children’s Health Insurance Program, which would have affected 47,000 children of working-class parents. Lawmakers reversed course before the effective date only after concluding that the state might run afoul of federal requirements and lose billions of dollars in matching money.

The state has also enacted a wide range of Medicaid cuts, eliminating coverage for emergency dental procedures, insulin pumps and orthotics. “We realize this has serious impacts on people,” Ms. Carusetta said. “Unfortunately, given the fiscal constraints facing our state, the Legislature has limited options at this point.”

Disabled children: Is it Ethical to Restrict???


Should parents be able to restrict the growth of profoundly
disabled children to make them easier to care for at home? A
working group convened to discuss "growth attenuation" has given
the idea a cautious Yes in the Hastings Center Report.

Debate has raged since 2006, when the first case of the procedure
came to light. This involved Ashley, a 6-year-old girl with
profound developmental disabilities who underwent growth
attenuation in Seattle Children's Hospital at the request of her
parents. Doctors and ethicists argued that Ashley's parents could
more easily move her, dress her, and involve her in family

But the intervention drew strong criticisms, particularly from
disability rights and family support groups, who compared it to
involuntary sterilization and other horrific treatments inflicted
on disabled people throughout history, ostensibly for both
individual and social benefit.

The working group argued that growth attenuation could be "an
ethically acceptable decision" for profoundly disabled children who
have an IQ of less than 20 to 25. About 4,000 are born each year
every year in the US. They admitted that safeguards would be needed
so that the pool does not grow.

One concern was that "a request for growth attenuation might
actually reflect the parents' desire to ease their own burden
rather than support the child's interests." However, most of the
time parents have the best interests of their child in mind, the
working group argued. Growth attenuation is even intended to make
participating in family life easier. However, the committee also
observed that "the presumption that parents must always sacrifice
their own interests for the sake of the child is, practically
speaking, untenable and disrespectful of the parents".

Not everyone agreed.

One of these was Sue Swenson, who has a legally blind,
quadriplegic, nonverbal, autistic, profoundly intellectually
disabled, 6-foot-tall, 190-pound son. "Just to be clear: he has a
good life, friends, and interests. He is loved," said Ms Swenson.
"At 28, he is no longer a child." She commented that there is
continuous pressure to "fix" people with disabilities, instead of
accepting them. In her opinion, growth attenuation should never be
used unless it treats an underlying disorder. "The human rights of
the child as a person with disability should limit parental
rights," she said. ~ Eurekalert, Nov 30;, Nov 30;

Tuesday, November 30, 2010

Buying eggs and sperm: should contries buy egg and sperm from one another to ensure access?

UK clinic granted permission to buy 'Russian eggs'

29 November 2010

By Nishat Hyder

Appeared in BioNews 586

A UK fertility clinic, the Centre for Reproductive and Genetic Health (CRGH), has received permission to import eggs from Russia, in order to meet the demand for donated eggs. Using the Russian eggs, the CRGH, which already imports sperm from Denmark, will create an egg bank for women looking to undergo fertility treatment.

To transport the eggs, Altra Vita, the Moscow based clinic from which the eggs are imported, makes use of a freezing method called vitrification, where all water is removed from the egg before it is frozen in liquid nitrogen. The clinic's website contains a catalogue of egg donors, including information such as height, weight, hair and eye colour, education, age and ethnic background.

The process is overseen by the Human Fertilisation and Embryology Authority (HFEA), which required assurance that the Russian donors were not paid excessively. The payment of egg donors is unlawful in the UK but donors may receive some compensation for expenses. The donors also had to agree to the possibility of their details being disclosed to their genetic children in the future, the Sunday Times reports. Children in the UK born from donated gametes have the right to trace their biological parents.

There has been a shortage of donor eggs available for fertility treatment in recent years in the UK, resulting in long waiting lists and may account for why many couples decide to go abroad to receive treatment. The situation is complex, however the lack of publicity about egg donation and comparatively poor compensation paid to donors are regularly cited as possible reasons behind the shortage of donated eggs in the UK. At present, compensation is limited to a maximum of £250 per cycle of egg donation, compared to sums in excess of £6,000 paid to donors in the United States.

The Sunday Times reports the CRGH had originally decided to import eggs from America, but withdrew these plans as donor compensation was deemed excessive. So far around ten British women have undergone fertility treatment at the CRGH using eggs donated by Russian women, the newspaper said.

Saturday, November 27, 2010

US 'artificial life' to take middle ground

US "artificial life" report to take middle ground
by Michael Cook | Nov 25, 2010 |

tags: artificial life, synthetic life

The Presidential Commission for the Study of Bioethical Issues will soon finish a report on "synthetic life" commissioned by President Obama earlier this year. The report was prompted by scientific entrepreneur Craig J. Venter's announcement that his team had created an artificial genome. The commission was asked to study the ethical and safety aspects of this development. The report is due on December 15.

The chair, Amy Gutmann, president of the University of Pennsylvania, gave The Scientist a preview of the recommendations:

On oversight:

"We're recommending a middle ground between what you might call the proactive view 'let science rip' and the very cautious view, which says don't let science move forward until you have mitigated all the risks. We think that prudent vigilance is the Aristotelian mean between those two extremes and it requires ongoing risk analysis, rather than stop science until you know all the potential risks in the future."

On synthetic biology hype and hysteria:

"We're recommending that an independent organization do for synthetic biology and biotechnology what does for politics, which is to a fact check, be an online resource for the public and journalists that you can check the veracity of certain claims or criticisms of new discoveries. So you might imagine a new online site called"

On safeguards:

"We're likely to recommend that new organisms when they're created should be marked or branded in some manner to be able to monitor development in synthetic biology. And there are many possible ways of doing this. We were given examples of suicide genes or other types of self-destruction triggers that can be engineered into organisms in order to place a limit on their lifespan."

On do-it-yourselfers:

"The 'do-it-yourselfers' are individuals who work not in institutional settings. Do-it-yourself biology is an important and exciting part of this field and it showcases how science can engage people across our society who don't have university or industrial affiliations. At the same time, the global expansion of do-it-yourself bio raises some concerns about safety and security."

The Scientist, Nov 19

Monday, November 22, 2010

Reasonable or Unreasonable? (Reproductive Rights- Who's should win out?)

Don't let market forces govern human procreation

22 November 2010

By Dr Juliet Guichon
Juliet Guichon is Senior Associate in the Office of Medical Bioethics, Faculty of Medicine, University of Calgary

Appeared in BioNews 585

Canada's National Post reported last month that two British Columbians who had hired a 'surrogate' mother, changed their minds and wanted the woman to abort (1). The fetus apparently had Down's syndrome. The pregnant woman resisted abortion but then acquiesced.

Perhaps this case received so much media attention because it starkly pits an idealised vision of the practice of commercial 'surrogacy' against reality. This idealised vision is based on the view that technology, preconception intent and market-based demand for children combine to improve human procreation and thereby quality of life in society. But this British Columbia (BC) case reveals how those three notions fail, in practice, to operate in the best interests of the vulnerable.

Technology means the systematic application of scientific and other organised knowledge to practical tasks by their division into component parts (2). By reducing human procreation to component parts, technology causes sperm, egg and gestational capacity to become 'factors of reproduction' (3). The BC commissioning couple could purchase the missing factor of gestational ability, but contributing a factor to widget production is different from being pregnant, which involves the whole woman including her body and emotions.

When preconception intent is used to determine parenthood, a pregnant woman can become only a 'babysitter' (4). Commissioners also become entitled to interrupt the gestational process based on the presumed quality of the product - even though intentions about child rearing can alter before, during and after a pregnancy.

Preconception intent and genetic relatedness are used to claim that an embryo in another's body belongs to those commissioning. Discounted are the nine months of 24-hour days gestating and then labouring, delivering and lactating. As surrogacy broker Sally Rhoads said: 'The baby that's being carried is [the commissioners'] baby. It's usually their genetic offspring' (5). Market ideology makes technology and preconception intent more powerful. The market permits women to sell their gestational labour to the highest bidder and to permit those wishing to rear a child to pay to obtain one. Scholars argue this system is the best way to satisfy adult desires while maximising social welfare, and promoting autonomy and dignity (6). But where are autonomy and dignity when a pregnant woman is required to submit to highly-invasive gynaecological surgery she apparently doesn't want?

Market norms fail to govern human procreation ethically. As Elizabeth Anderson argued (7), there are four market norms. They include, first, impersonal relations. The goal of preconception arrangements is to create and maintain impersonal relations among all parties to the agreement and the fetus itself. Some agreements state the pregnant woman shall not bond with the fetus. Such terms implausibly require her to have an impersonal relationship with the fetus as it grows and moves inside her and to terminate the relationship almost immediately after birth.

The deal's structure also makes it difficult for the commissioners to have a personal relationship with the fetus. The fetus is unlikely to hear the commissioners' voices because of geographical distance. The commissioners are unlikely to be allowed to touch the woman's abdomen. Moreover the BC agreement also enabled the commissioners to refuse a personal relationship with their genetic offspring if born alive with Down's syndrome. But children have an interest in the love and care of their parents.

Anderson's second market norm is parties should have the ability to pursue their own advantage without consideration of others. This notion probably explains why the commissioners required the woman to abort a fetus they had hired her to carry. Under market norms, parties to a market transaction are expected to take care of themselves and not to depend on others to look after their own interests. As the broker asked: 'Why should the intended parents be forced to raise a child they didn't want? It's not fair' (8).

Anderson's third market assumption is the benefits of the 'good' should be limited exclusively to the purchaser. Denying the bodily participation of all three parties, the market claims only the commissioners are the child's true parents. In reality, the agreement makes them consumers or, at best, optional parents to their living child; as a Vancouver lawyer commented, agreements 'usually absolve the parents of responsibility when a defect is found and the surrogate refuses an abortion' (9).

The fourth market norm is parties' wants or desires are sufficient to justify their market participation if backed by the ability to pay. The market has no method of discriminating among the reasons people have for wanting things and aims to satisfy adult wants. Commissioners can and do remove themselves from transactions if their desires change. Ms. Rhoads said: 'In three other Canadian cases, surrogates are now raising the babies after the commissioning couples got divorced and backed out' (10).

Human procreation makes adults profoundly vulnerable and brings a needy and dependent human to life. This commercial 'surrogacy' case demonstrates how the ideologies of technology, preconception intent and the market exacerbate the vulnerability of adults and thwart the achievement of children's best interests.

Saturday, November 20, 2010

Oldest Woman Gives Birth: Is It Ever Too Old to Give Birth?

Adriana and Eliza

A Romanian woman who was pipped as the world’s oldest mother by a 70-year-old Indian woman is considering giving birth at 72. Adriana Iliescu, a writer and part-time lecturer in Romanian literature says “I am fine and healthy and I think it would be possible to have another child in the future, but I’m not in a rush at the moment.

“I am so close to [my 5-year-old daughter] Eliza, so bonded with her, I’m not sure I’d be able to consider having another child if it actually came to it.

“Eliza is energetic and fun — a very happy child. She is everything to me and nothing else counts or matters. The child is mine and that’s all I care about, but medically it is not impossible for me to have another child.”

Is she too old to have a child? Not on your nelly. “I try not to look in the mirror, because I don’t enjoy it,” she says. “‘The mirror is unkind to women, but if we are talking about my energy then I feel like a young woman. I feel like I’m 27 and when I feel a bit more tired, I feel like I’m 37. I am healthier than women more than half my age. People think they are being funny when they call me granny, but I didn’t have Eliza to make me look younger. I never feel my years.”

This is Adriana’s second chance at motherhood. She married at 20 and fell pregnant soon afterwards. But the doctors advised her to have an abortion, as she had recently recovered from TB. She agreed, reluctantly. When she was 24, her husband left her. She became caught up in her profession, and her biological clock tolled midnight. But when IVF came to Romania, she found that it was still not too late. ~ Daily Mail, Nov 14

Wednesday, November 17, 2010

you too can be a bioethicist!

fyi: Looking to the Future of Bioethics
The fortieth anniversary essay contest winners in the Hastings Center Report
An undergraduate, a graduate student, an early career professor who is also a practicing physician, and a researcher who is also a lecturer in ethics, philosophy, biochemistry, and microbiology at a school for nurses and midwives are recognized in the November-December issue of the Hastings Center Report.
"Establishing a Duty of Care for Pharmaceutical Companies"
by Remy Miller
"A Role for Moral Vision in Public Health"
by Daniel B. Rubin
"The Art of Dying Well"
by Lydia Dugdale
"The Challenge of Regenerative Medicine"
by Leen Trommelmans
The essays were chosen out of about two hundred received when we issued a call for papers on the future of bioethics. The call commemorated the fortieth year of publication for the Report.

In the editor's note for the current issue, Gregory Kaebnick expresses his gratitude for the extraordinary response to the call. "It is a great responsibility to be entrusted with writing that so obviously reflects great personal investment from the writers. And it's a comfort, going forward into the next forty years, to know that there's a deep pool of talent for the Report to draw upon."

Learn more about the Hastings Center Report
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Bioethics Events: The inside track to the bioethics community
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Hastings Center Report Fortieth Anniversary (1970-2010)

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The Hastings Center also publishes IRB: Ethics & Human Research, the leading journal devoted to protecting the rights and welfare of adults and children who participate in clinical trials and other research studies.