Angelina Jolie's surprising announcement that she'd had both breasts removed to reduce her risk of getting cancer has brought renewed attention to the controversial procedure.

Rates of women who are opting for preventive mastectomies have increased by an estimated 50 percent in recent years, experts say. And surveys show they are happy with the decision.

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Undated photo of Angelina Jolie, her mother, Marcheline Bertrand, and her brother, James. Bertrand died of cancer in 2007. She was 56.

But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring. Women can take tamoxifen or one of several newer drugs called aromatase inhibitors and reduce their risk by as much as 50 percent.

For Jolie, the chance to prevent cancer was worth losing her breasts, she wrote in the New York Times. 

Like many other women having the procedure, Jolie, who is 37 and a mother of six, says she did not want to live in dread of the cancer that killed her mother at age 56. “I decided to be proactive and to minimize the risk as much I could,” she wrote.

Since genetic tests for breast cancer risks have become available, the numbers of women choosing to be tested and then to have their breasts removed has shot up, says Dr. Todd Tuttle, chief of surgical oncology at the University of Minnesota.

Jolie said she had a mutation of the BRCA1 gene, which raises the risk of both breast and ovarian cancer. “My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman,” she wrote. She says she also plans to have her ovaries removed at some point.

In Jolie's case, her decision was "absolutely indicated," said Tuttle. At 37, Jolie is young to worry about breast cancer. But studies also show that the younger a woman is when she develops breast cancer, the more aggressive the disease is.

Other genes can raise or lower the risk that BRCA1 and BRCA2 mutations confer. And these mutations are rare. The U.S. Preventive Services Task Force recommends that only women with a strong family history even think about getting a BRCA genetic test –which is only 2 percent of U.S. women.

But why are so many women opting for surgery when survival rates for breast cancer are 93 percent if it’s caught at the earliest stages and 88 percent at stage 1?

“I have postulated that one of the downsides of breast cancer awareness is that there is a situation of hyperawareness. Women in the United States are just assuming they are going to get breast cancer,” Tuttle says. The actual rate is about 12 percent. About 1 in 8 U.S. women will develop breast cancer, and while 230,000 women were diagnosed with breast cancer last year, just under 40,000 died of it.

Dr. Sandra Swain, president of the American Society of Clinical Oncology, agrees that women shouldn't just assume they are at high risk. But she doesn't think there's any such thing as too much awareness.

"To me, you never can be too aware," says Swain, medical director of the Washington Cancer Institute at MedStar Washington Hospital Center. "I think people speaking out like Angelina Jolie are very good. She is very thoughtful about it." Jolie got genetic counseling and got an assessment of her own personal risk. "That's a good model," Swain said.

It’s hard to determine the precise number of women who are opting to have surgery for a medical condition they don't yet have. Private insurance companies have the best information, and there’s not an easy way to get it and compile a database.

Tuttle’s done a lot of research looking at how many women chose to have both breasts removed when cancer was found in one breast. Although the risk of developing cancer in the healthy breast is fairly low, many women choose to have both breasts removed when a tumor develops in one.

One study showed that women aged 55 and younger with a family history of breast cancer in both breasts – a high-risk group – had about a 16 percent risk of developing cancer in the second breast over the next 10 years. Older women would have an even lower risk. Yet the rates of prophylactic mastectomies among these women doubled between 1998 and 2005.

“It is pretty clear that the use of double mastectomy for women with cancer in one breast has exploded,” Tuttle told NBC News.

Another way to look at rates is to study women with a form of pre-cancer called lobular carcinoma in situ, or LCIS for short. LCIS does not always progress to cancer, but some women choose to have their breasts removed after a diagnosis, Tuttle says.

“Rates of prophylactic mastectomy for women with LCIS increased by 50 percent since the year 2000,” Tuttle said. He presented a study to the American Society of Breast Surgeons last week showing rates of women have preventive mastectomies after LCIS went from 12 percent in 2000 to 18 percent in 2009.

Jolie’s decision resonated with women like Lizzie Stark, 31, of Edison, N.J., who had a preventive double mastectomy two years ago after learning she had the BRCA1 gene. Her immediate response was empathy for the movie star – “This is a terrible decision to have to make” – and gratitude that Jolie chose to go public.

“I think it’ll make it easier, the more women who come out and talk about it,” said Stark.

Private insurers usually pay for both the removal and the reconstruction, including implants, if a doctor indicates the need. And the results are good if done by a good surgeon, studies show. Women usually feel good about their choice, also – surveys of women who have had double mastectomies show little regret.

But women may not realize just how serious the surgical procedure is, Tuttle says.

“I wonder if one of the reasons driving this trend is women underestimate the extent of this operation,” he said. “Prophylactic mastectomy with immediate reconstruction is a big operation. It can be five to six hours,” Tuttle says. “There can be complications and re-operations.”

And recovery can take a “good month”,  he added.  

“Prophylactic mastectomy is permanent and irreversible,” the National Cancer Institute cautions. “This surgery causes significant loss of sensation in the breast, which can have an impact on sexuality.”

Stark, who also had nipple-sparing reconstructive surgery, said she appreciated that Jolie made a point of saying that the surgery didn’t diminish her sexuality.

“I did feel like I lost my femininity,” Stark said. “Because it is a part of your body associated with femininity. I started wearing girlier clothes than I had before. I started wearing more makeup and plucking my eyebrows. But you don’t have to lose your femininity.”

Jolie explains the motivation behind her decision: control. "Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of," she writes.

Related:

• "I'm about to have a double mastectomy"
• New genetic clues found for breast cancer
• New study finds big batch of cancer genes

By Colleen Jenkins
Reuters

A South Carolina couple sued doctors and state social workers on Tuesday for subjecting a 16-month-old child born with both male and female genitalia to what they say was medically unnecessary and irreversible sex-assignment surgery while the toddler was in foster care. 

The state and federal lawsuits - believed by the couple's lawyers to be the first of their kind in the United States - argue that doctors should not have performed surgery to make the child's body appear to be female when they knew they could not predict how gender would develop.

The child, now 8, has shown strong signs of identifying as male and recently began living as a boy, according to Pam and Mark Crawford, who adopted him after the surgery.

The couple, a psychiatrist and stay-at-home dad, said they are taking legal action in the hopes of helping other children who face similar medical conditions.

"We feel very strongly that these decisions to permanently alter somebody's genitalia and their reproductive ability for no medical reason whatsoever is an abhorrent practice and can't be continued," Pam Crawford said in a phone interview.

"It is too late for our son," she added. "The damage has been done to him."

The lawsuit filed in state court in Columbia names the South Carolina Department of Social Services, Greenville Hospital System and Medical University of South Carolina as defendants.

Spokeswomen for the state department and the hospital system said they could not comment on the pending litigation, which alleges gross negligence and medical malpractice based on a lack of informed consent.

A spokeswoman for the Medical University of South Carolina - where the surgery took place - said the suit would be reviewed by the hospital's leadership and general counsel.

The child, identified only as M.C., was born in South Carolina in November 2004 and entered the state's foster care system in February 2005 after being removed from the custody of his biological parents.

Shortly after he was born, doctors noted that he had "ambiguous genitals" and both male and female reproductive organs, the lawsuits said.

Though doctors determined that he could be raised as either a boy or a girl, they opted for genital surgery that made the child's body look female - a decision the Crawfords say was premature because his dominant gender identity had not yet emerged.

"The surgery eliminated M.C.'s potential to procreate as a male and caused a significant and permanent impairment of sexual function," according to the filings in state court.

"The doctors knew that sex assignment surgeries on infants with conditions like M.C.'s poses a significant risk of imposing a gender that is ultimately rejected by the patient," the lawsuit says.

The federal lawsuit, filed in U.S. District Court in Charleston, South Carolina, says the surgery violated the child's constitutional rights.

Risks not fully explained
Sex-assignment surgeries on infants with intersex conditions, previously called hermaphroditism, have been performed since the 1950s, according to the Southern Poverty Law Center and Advocates for Informed Choice, which are helping represent the Crawfords and their child. 

The medical procedures often are performed without the risks being fully explained, the groups said.

"Doctors often assume they have to do surgery to make their bodies fit the stereotypes," said Anne Tamar-Mattis, executive director of Advocates for Informed Choice, a legal advocacy group for children born with variations of reproductive or sexual anatomy. In the case of the Crawfords' child, "the doctors knew from the beginning that there was a strong probability that this child would be a boy."

The Crawfords, who live in Columbia, said they initially raised M.C. as a girl after gaining custody when the toddler was about 20 months old.

But they said they soon noticed M.C. tended toward interests typically associated with males and preferred boys' clothing. As he grew older, he asked for his hair to be cut short like his father's and wanted to join a gymnastics class as a boy, they said.

"He's always been able to amuse himself with a toolkit," Mark Crawford said. "He's more likely than any of our other children to be climbing trees, wanting to ride bikes, flying model airplanes."

A couple of months ago, in consultation with their pediatrician, the Crawfords said their son made the transition to live as a boy and has been accepted as one by his friends.

But they added that the long-term consequences of the surgery are heartbreaking to try to explain to him.

"It's really tough because he's now asking the questions about how he can be like everybody else," Pam Crawford said.

By Trevor Stokes
Reuters

Bottling up emotions is thought to harm both mind and body, but a new study suggests that the opposite extreme may be no better.

In a study of thousands of heart attack patients, those who recalled having flown into a rage during the previous year were more than twice as likely to have had their heart attack within two hours of that episode, compared to other times during the year.

"There is transiently higher risk of having a heart attack following an outburst of anger," said study author Elizabeth Mostofsky, postdoctoral fellow with the Cardiovascular Epidemiology Research Unit at Harvard Medical School in Boston.

The greater the fury - including throwing objects and threatening others - the higher the risk, Mostofsky's team reports in The American Journal of Cardiology. The most intense outbursts were linked to a more than four-fold higher risk while milder bouts of anger were tied to less than twice the risk.

"The association is consistently stronger with increasing anger intensity; it's not just that any anger is going to increase your risk," Mostofsky told Reuters Health

The data came from a group of 3,886 patients who were part of a study between 1989 and 1996 to determine what brought on their heart attacks.

Within four days of having a myocardial infarction - the classic "heart attack" - participants were asked about a range of events in the preceding year, as well as about their diets, lifestyles, exercise habits and medication use.

A total of 1,484 participants reported having outbursts of anger in the previous year, 110 of whom had those episodes within two hours of the onset of their heart attacks.

Participants recalled their anger on a seven-point scale that ranged from irritation to a rage that caused people to lose control.

The researchers found that with each increment of anger intensity, the risk of heart attack in the next two hours rose. That risk was 1.7 times greater after feeling "moderately angry, so hassled it shows in your voice;" and 2.3 times greater after feeling "very tense, body tense, clenching fists or teeth" and 4.5 times greater after feeling "enraged! lost control, throwing objects, hurting yourself or others."

The most frequent causes of anger outbursts that participants recalled were family issues, conflicts at work and commuting.

Although the research cannot prove that the angry outbursts led to the heart attacks, the results "make sense," according to Dr. James O'Keefe Jr, a cardiologist at St. Luke's Hospital in Kansas City who wasn't involved in the research.

Anger is an emotion that releases the fight-or-flight-response chemicals epinephrine and norepinephrine, he said.

Those hormones raise our blood pressure, our pulse, constrict blood vessels, make blood platelets stickier (increasing the risk of blood clots), which O'Keefe says could be one way anger may be associated with increased heart risk.

"Contrary to the urban myth that it's best to express anger and get it out there, expressing anger takes a toll on your system and there's nothing really cathartic about it," O'Keefe told Reuters Health.

"(Anger) serves no purpose other than to corrode the short and long-term health of your heart and blood vessels," he said.

In the study, patients on blood pressure medications known as beta blockers had a reduced chance of having a heart attack following an angry outburst, Mostofsky's team notes in their report.

The authors say that finding suggests doctors might consider using those drugs preventively in people at risk of heart attack and prone to anger.

In discussing other possibilities for protecting people at risk, the researchers also write that during the 1990s when the data were collected, not enough study participants were on the newer statin drugs to determine their potential effects on heart attack risk.

Similarly, the number of participants who were on antidepressants was too low to tell whether they would have made a difference.

Regular exercise, Mostofsky and her colleagues write, has been shown to lower overall heart attack risk. Though they found no differences in the link between angry outbursts and short-term heart attack risk among regular exercisers in the study, they conclude that maintaining an active lifestyle couldn't hurt.

The study is part of a broader field of research looking at managing the effects of emotional states on cardiovascular systems, said Donald Edmondson, assistant professor of behavioral medicine at Columbia University Medical Center in New York, who studies heart attack survivors but was not involved in the new work.

"People prone to angry outbursts or more broadly, who are prone to anxiety, depression or other intense emotions should be aware that this is something that impacts their cardiovascular system," Edmondson told Reuters Health.

An unusual medical brawl erupted on Tuesday when the influential Institute of Medicine issued a report questioning the basis of years of advice for Americans to cut their salt intake in half.

The Institute, which advises the federal government on medical issues, concluded that the studies have answered the question poorly.  A panel of experts looked at studies showing the medical effects of eating too much salt, as well as at studies that have been used to suggest that some people may suffer form eating too little salt.

Its finding: There’s enough evidence to support advising Americans to keep sodium to 2,300 milligrams a day or less, but there’s not enough to support the current, lower target of 1,500 milligrams a day.

“There is evidence to lower excessive salt intake,” Dr. Brian Strom, a professor of medicine, epidemiology and biostatistics at the University of Pennsylvania, who chaired the panel, told reporters.

There is also good evidence that lowering intake to around 2,300 milligrams a day decreased the risk of heart disease,” Strom said. But he said that the evidence was absent to support recommendations of taking it as low as 1,500 milligrams a day. And, he said, there were some studies suggesting this could harm some people -- although those studies are also flawed.

This infuriated the American Heart Association.

“While the American Heart Association commends the IOM for taking on the challenging topic of sodium consumption, we disagree with key conclusions,” Heart Association CEO Nancy Brown said in a statement.

“The report is missing a critical component -- a comprehensive review of well-established evidence which links too much sodium to high blood pressure and heart disease.”

The Institute agrees that Americans eat far too much salt -- more than 3,400 milligrams a day on average. Most is “hidden” salt, in processed foods such as bread and cereal, restaurant meals and especially fast food.

And studies clearly show that salt raises blood pressure and that cutting salt can lower blood pressure. High blood pressure damages blood vessels and can lead to stroke, kidney failure and heart failure.

“We knew about all this data and it didn’t change our thinking,” said Dr. Elliott Antman of Brigham and Women’s Hospital and Harvard  Medical School . “We have to take the evidence that we have -- which is strong,” added Antman, a spokesman for the American Heart Association.

Several studies have suggested that about a quarter of Americans are salt-sensitive -- that their blood pressure is directly and immediately affected by how much salt they eat. But this doesn’t mean that the other 75 percent can pile on the salt with impunity, Antman said.

“About 90 percent of the population will ultimately develop hypertension as they age,” he said. “Part of this is almost certainly from years of eating too much salt, he added. Eating too much salt can also affect kidney function, he said.

“An aggressive reduction in sodium is the way to go,” he said.

Strom would not be drawn into an argument. “What we are saying is the available data is not consistent on outcomes,” he said. “We are not saying that one shouldn’t be lowering excessive salt intake in the general population,” he added.  “There is simply a lack of data showing it is beneficial.”

And, he said, it is not up to the panel to set a target. “It’s not that we are against (a target intake of) 1,500 milligrams,” he said. “The data are not consistent.”

The trouble with trying to measure salt intake is that it’s very hard to separate out salt from the rest of the  ingredients in food, said Antman.

A truly scientifically rigorous study would randomly assign people to eat diffferent amounts of salt daily and watch to see what kind of diseases they develop -- something that would be difficult to set up, police and also difficult to defend, ethically.

Antman says most Americans get their salt from prepared foods and from restaurants, not from at-home, scratch cooking. What’s needed, he said, is more encouragement for restaurants and food companies to lower sodium content of food.

The food industry argues that Americans have a taste for salt and they won’t buy products that are salt-free.  Antman agrees that it’s hard.  “We are used to a high sodium content in our food,” he said.

“But the data say that in just two to three weeks you can train person’s taste buds to become accustomed to a lower sodium content in food.”

The Center for Science in the Public Interest piled on, too.

"What the committee failed to emphasize is that most Americans are deep in the red zone, consuming 3,500 to 4,000 milligrams of sodium a day,' the group, which publicizes calorie counts and other food risks, said in a statement.

"It's clear that those excessive levels increase the risk of high blood pressure, heart attacks, and strokes. Whether we aim for 2,300 or 1,500 milligrams a day is irrelevant until we move down out of the red zone. At restaurants, you can get roughly 2,000 milligrams of sodium from just one burrito, a single-serve pizza, or an order of kung pao chicken, and at least 1,000 milligrams from a typical sandwich or burger."

The Centers for Disease Control and Prevention has a widget on salt intake here.

Related:

• Too much salt may trigger autoimmune disease
• US advises Americans to eat less salt
• Most teens well down the road to heart disease

The Obama administration filed its expected appeal on Monday of a judge's order to make the so-called "morning-after pill" available to anyone, without a prescription.

The federal government asked the 2nd U.S. Circuit Court of Appeals in New York to postpone federal judge Edward Korman’s ruling against the Health and Human Services Department’s requirement that anyone under 17 get a prescription for the emergency contraception.

Korman refused on Friday to stay his ruling while the appeals court considered the appeal, calling the government’s legal attempts “frivolous” and saying they were done in bad faith.

Women’s health groups had sued against the HHS decision, which had overruled the Food and Drug Administration’s original approval of Plan B birth control pills for women and girls of all ages. HHS Secretary Kathleen Sebelius had said she wasn’t comfortable seeing the pills freely available to girls as young as 11.

The FDA, which had protected against Sebelius’s decision, last month approved another drug application to make one brand available over the counter to girls as young as 15, but still requiring proof of age.

Korman railed against both decisions and has accused the government of simply trying to delay the inevitable.

For now, things are a bit confusing. The appeal, technically filed by the Food and Drug Administration, asks the appeals court to stop Korman's ruling from taking effect until the case is settled.

Teva Pharmaceutical’s single-pill option, called Plan B One-Step, is available with ID to anyone 15 and older. Anyone younger needs a prescription to get it.

Other versions of the medication are available to anyone 17 and older with proof of age, and to anyone younger with a prescription.

"You have to show an ID either way," said Judy Waxman of the National Women's Law Center. Waxman  predicts the appeals court will stay Korman's decision until a hearing can be scheduled on the appeal. "This could take months again until we get the Second Circuit decision," Waxman said in a telephone interview.

Related:

Judge refuses to delay Plan B ruling, has choice words for HHS

Judge: Make 'morning-after pill' available to all girls without prescription

West Nile virus killed 286 people in the United States last year, making it the deadliest year yet for the virus, the federal government reported on Monday.

Texas was especially hard hit by the virus, which is carried by mosquitoes and which only arrived in the United States in 1999, the Centers for Disease Control and Prevention reports.

“A total of 5,674 cases of West Nile virus disease in people, including 286 deaths, were reported to CDC from 48 states (excluding Alaska and Hawaii),” the CDC said in a statement.

West Nile virus is widespread in Africa, Asia and parts of Europe. It causes fever and aches and usually isn’t serious.  But in some people it can spread to the brain or spinal cord, killing them or causing paralysis.

No one’s sure precisely how West Nile arrived in North America, but it was first reported in New York in 1999. It’s now been reported in all 48 contiguous states, as well as parts of Canada and Mexico and all the way to Argentina.

The CDC's Dr. Lyle Petersen says it's impossible to know what West Nile will do this summer. "It is very hard to predict," he said in a telephone interview. "I can't tell you what the weather is going to be like this summer, for example." The virus is driven by weather; it's worse during hot, wet summers in temperate climates.

"What last summer's outbreak tells us is that West Nile is not going to go away," Petersen said. "Most places in the United States are at risk of having outbreaks."

The virus has a life cycle that takes it from mosquitoes to birds and back into mosquitoes that bite people. Its severity varies from year to year. In some years, only a few cases are reported, and in others, like 2012, it infects many people.

In 2011, CDC reported 712 cases of West Nile virus, and 43 deaths. The worst previous year was 2003, when 9,862 cases were reported with 264 deaths. Only severe cases are reported to CDC -- health experts say most people who are infected don’t even know it. People over 50 and people with underlying illnesses are the most vulnerable.

“Last summer’s outbreak likely resulted from many factors, including higher-than-normal temperatures that influenced mosquito and bird abundance, the replication of the virus in its host mosquitoes, and interactions of birds and mosquitoes in hard-hit areas,” the CDC said in a statement.

“Because the factors that lead to West Nile virus disease outbreaks are complex, CDC cannot predict where and when they will occur."

There’s no vaccine against West Nile virus for people, but there is one for horses. There’s also no specific antiviral drug that can help infected people -- those who are seriously ill get what’s called supportive treatment in the hospital.

The CDC recommends that people avoid being bitten by mosquitoes, which can carry other diseases, also, from Eastern equine encephalitis to, in very rare cases, dengue fever. Standing water, even in extremely small containers, can breed mosquitoes. People should wear long sleeves and use insect repellent that contains DEET, picaridin, IR3535, and para-menthane-diol (PMD), CDC advises.

Petersen says scientists don't quite understand why, but West Nile tends to cause more human outbreaks in temperate climates than in tropical zones. Female mosquitoes carry the infection over from one summer to another, he said. "Infected female mosquitoes find a warm place to live and they just hang out all winter," he said. They often overwinter in sewers or basements, he said.

"These infected mosquitoes come out in the spring and then they look for a blood meal and they bite birds and infect birds. During spring and summer you get more and more infected mosquitoes and birds," Petersen added.

"By the middle of summer there are so many infected mosquitoes that it starts to present a human infection risk."

And because the virus can live in both mosquitoes and birds, it would be much more difficult to eradicate than malaria, which mostly infects people, Petersen said. The CDC helped eradicate malaria in the United States in 1951.

Related:

• Is spraying for West Nile safe?
• Don't expect hurricane effect from West Nile

Cancer patients could face high costs for medications under President Barack Obama's health care law, industry analysts and advocates warn.

Where you live could make a huge difference in what you'll pay.

To try to keep premiums low, some states are allowing insurers to charge patients a hefty share of the cost for expensive medications used to treat cancer, multiple sclerosis, rheumatoid arthritis and other life-altering chronic diseases.

Such "specialty drugs" can cost thousands of dollars a month, and in California, patients would pay up to 30 percent of the cost. For one widely used cancer drug, Gleevec, the patient could pay more than $2,000 for a month's supply, says the Leukemia & Lymphoma Society.

New York is taking a different approach, setting flat dollar copayments for medications. The highest is $70, and it would apply to specialty drugs as well.

Critics fear most states will follow California's lead, and that could defeat the purpose of Obama's overhaul, because some of the sickest patients may be unable to afford their prescriptions.

"It's important that the benefit design not discriminate against people with chronic illness, and high copays do that," said Dan Mendelson, president of Avalere Health, a data analysis firm catering to the health care industry and government.

Avalere's research shows that 1 in 4 cancer patients walks away from the pharmacy counter empty-handed when facing a copay of $500 or more for a newly prescribed drug.

"You have to worry about a world where if you happen to contract cancer or multiple sclerosis, you are stuck with a really big bill," Mendelson said. "It's going to be very important for states to take a long, hard look at their benefit design."

Although the money for covering uninsured Americans is coming from Washington, the heath care law gives states broad leeway to tailor benefits, and the local approach can also allow disparities to emerge.

A spokesman for Covered California said state officials are trying to balance between two conflicting priorities: comprehensive coverage and affordable premiums.

"We are trying to keep the insurance affordable across the board," said Dana Howard, the group's spokesman. "This is just part of trying to manage the overall risk of the pool." Covered California is one of the new state marketplaces where people who don't get coverage on the job will be able to shop for private insurance starting this fall. Coverage takes effect Jan. 1.

Insurers are forecasting double-digit premium increases for individual policies, as people with health problems flock to buy coverage previously denied them. The Obama administration says the industry warnings are overblown, and that for many consumers, premium increases will be offset by tax credits to help buy insurance. And officials say it's important to realize that the law sets overall limits on patients' liability, even if those seem high to some people. Still, a full picture of costs and benefits isn't likely to come into focus until the fall.

Howard said California officials are aware of the concerns about drug costs and are trying to make medications more affordable.

Meanwhile, he said consumers will be protected because the law limits total out-of-pocket costs — the deductibles and copayments that policy holders are responsible for, apart from monthly premiums. In California, the annual out-of-pocket limit for an individual is $6,400, although it can be as low as $2,250 for low-income people. Once that limit is reached, insurance pays 100 percent.

That's still a lot of money, and such reassurances haven't dispelled the concerns.

"The intent of the Affordable Care Act is to make sure that all Americans have access to quality, affordable health care," said Brian Rosen, a senior vice president of the Leukemia & Lymphoma Society. He adds that there is a danger that the insurance marketplaces "will discriminate against the patients with the highest medical need. That would completely undermine the spirit of the ACA."

The group has been joined by Rep. Doris Matsui, D-Calif., in urging state officials to reconsider the policy. The high copays "could prevent many patients from receiving the lifesaving treatments they need because of prohibitively high cost," Matsui wrote to the state.

The problem with costly drugs is similar to another money issue with the health care law — a provision that could price millions of smokers out of coverage. Insurers are allowed to charge tobacco users buying an individual policy up to 50 percent higher premiums. For a 55-year-old smoker, the penalty could reach nearly $4,250 a year, on top of the standard premium. California is trying to override that problem by passing its own law. There's also pending state legislation to address some issues with prescription costs, but its prospects are unclear.

Meanwhile, leukemia patient Lisa Lusk worries about what will happen to her. A nursing assistant who lives near Fresno, Lusk is hoping to return to work in the next few months. When that happens, she expects to lose emergency coverage she's now getting through the state. And the medication Lusk takes to manage her chronic form of the disease costs more than $5,000 a month.

"I'm scared that when I get a job my copay may be more than $1,500 a month," said Lusk. "I'll just be working to pay for my medications."

To pediatricians, gun control is a public health issue, not a political one. But they're treading a fine line, and they know it.

The American Academy of Pediatrics has begun a renewed push to try to get Congress to pass gun control measures, sending more than 100 pediatricians to Capitol Hill earlier this month. But others who have taken on the issue over the past decade have a warning for them: they can run afoul of the National Rifle Association and other pro-gun groups that are quick to paint anyone who advocates for gun control as a political extremist.

What the doctors want is an assault weapon ban, mandatory background checks and waiting periods before all firearm purchases, a ban on high-capacity magazines, handgun regulations and requirements for safe firearm storage under federal law.

“I think we can be honest brokers,” says Dr. Lolita McDavid, medical director for child advocacy and protection at University Hospitals, part of Case Western Reserve University’s school of medicine in Cleveland.

Johnny Hanson / AP file

With a little help, a child shoots an Airsoft gun at a target during NRA Youth Day events at the National Rifle Association's 142 Annual Meetings and Exhibits in Houston on Sunday, May 5, 2013..

“We have to have a collectively louder voice,” Dr. Danielle Laraque, who chairs the pediatrics department at Maimonides Infants and Children’s Hospital in Brooklyn, told a meeting of the Pediatric Academic Societies in Washington, D.C., earlier this month. “What we need is a call to action, to really look at how we can change public policy that is not often affected by data.”

They don't always get a friendly reception. Just two weeks before the doctors arrived, Congress had scuttled what gun-control advocates had considered a modest bill to expand background checks for gun sales.

Congress had already dropped a wider measure pushed by President Barack Obama and Vice President Joe Biden after the December shootings of 20 schoolchildren and six adults in Newtown, Conn.

Obama has been trying to roll back some of the restrictions placed on gun research by Congress. He’s issued an executive order specifically directing the Centers for Disease Control and Prevention to conduct research into gun injuries. While the CDC was never banned from doing so, Congress had specifically cut precisely the amount CDC spent on firearms violence research, sending a clear message.

“If you think that Congress has sort of been asleep…you are wrong,” said Dr. Daniel Webster of Johns Hopkins University, one of the few academic experts who has continued research on gun violence despite efforts to divert funding. “They have been doing a very good job of weakening the laws to make it easier for gun dealers to have the least amount of responsibility. They have made it harder to sue dealers and made it harder to access data on … which dealers are pumping out guns to criminals. They’ve made it almost impossible to prosecute a gun dealer.”

Pediatricians are puzzled that the statistics aren’t speaking for themselves.

“Where there are more guns in the United States, there are more people dying,” Dr. Matthew Miller of the Harvard Injury Control Research Center told the meeting in Washington, D.C. “There are more women dying, there are more men dying, and there are more children dying. We are talking about a lot of people who are dying when they live in places with a lot of guns and homes with guns.”

Miller’s done research on gun deaths using what CDC data he could get -- dating from before Congress cut its funding.

He divided the U.S. population in half, classifying half as living in high-gun-ownership states and half in low-gun-ownership states. In the “high gun states,” 21,148 people were murdered between 1988 and 1997, compared with 7,266 in the “low gun states”.  He found 369 kids up to 14 of age who were murdered using guns in states with high rates of gun ownership; 97 were killed deliberately with guns in low-ownership states.

And there were more murders overall, even using weapons other than guns in the high-gun-ownership states, Miller found. Other research finds kids and adults alike are more likely to commit suicide if they have access to a gun.

Miller hopes that pediatricians can change the tone of the argument, making it about safety.

“Here we are talking about children. We can’t gun-proof a child. We have to childproof our homes,” he said. “It is a leading argument that hopefully will change the way people think about guns generally.”

“Can we reframe the conversation so that it is about data, not about political beliefs?” Dr. Barbara Stoll of Emory University asked the meeting.

That might not be easy.  

“I am widely known as the ‘widely discredited Dr. Arthur Kellermann’,” Dr. Arthur Kellermann of the RAND Corporation, a think-tank, told the pediatrics meeting in D.C. Kellermann, who established the Emory Center for Injury Control, has spoken out about gun-injury and death rates that are almost 20 times higher in the U.S. than those in other high-income nations with populations of more than 1 million.

He’s also done research showing that people are 2.7 times more likely to be murdered if they have firearms in their homes – research challenged by guns-rights advocates. Kellermann says he’s not an advocate for gun control and cautioned the pediatricians to pursue changes that gun owners are comfortable with. 

Gun advocacy groups have moved to discredit the AAP, which represents 60,000 doctors who have voted overwhelmingly to support some gun measures. One was set up specifically to do this – the Doctors for Responsible Gun Ownership (DRGO).  “DRGO is a nationwide network of 1,400 medical doctors, other health care professionals, scientists, and others who support the safe and lawful use of firearms for any legitimate purpose,” the group says on its website.

Founded by the pro-gun-ownership Second Amendment Foundation, DRGO says the the AAP and the American Medical Association are “motivated by deep-seated prejudice against gun owners.” “DRGO’s mission is to expose the poor medical scholarship -- and the anti-gun bias behind it -- held out as truth by organized medicine and medical journalism,” the group says.

The NRA has sponsored legislation to stop pediatricians from asking parents about guns in the home -- something that really puzzles doctors who routinely ask about other safety issues, such as using car seats and wearing helmets while riding bikes.

A federal judge struck down Florida’s 2011 law that forbade doctors to ask about guns in the home, but the NRA has sponsored similar legislation in Alabama, North Carolina, West Virginia, Minnesota, and Oklahoma.

“The chilling effect persists,” Miller said.

Related:

• Slideshow: Faces of the NRA
• 'I am a mom with a gun': Why I'll teach my girls to shoot
• Kids at risk of suicide can get guns, study finds

Centers for Disease Control and Prevention

A CDC scientist harvests H7N9 virus that has been grown for sharing with partner laboratories for research purposes.

More than 50 travelers just back in the United States from China who had flu-like symptoms have been tested for the H7N9 bird flu virus, federal health officials say. So far, none has tested positive.

But the fact that they’re being tested at all shows just how worried the U.S. government is about this new strain of bird flu, which threatens at the same time as a still-mysterious coronavirus from the Middle East. The test kits had to be specially made up and distributed under an emergency provision.

“While no cases of H7N9 have been detected at this time in the U.S., 54 people with flu-like symptoms after travel to China have been tested. All have 54 tested negative for H7N9; while six tested positive for seasonal influenza A, and three tested positive for seasonal influenza B,” the Centers for Disease Control and Prevention says in its latest update on the virus.

Emergency operations centers are running 24/7, keeping an eye on both situations. While it's not unusual for the centers to be operating around the clock, it is rare to have two pandemic threats at once to plan for, says Edward Gabriel, who heads preparedness and response issues at the health and Human Services Department. 

"We want the latest and best information that we can get," Gabriel told NBC News. "We also need to look and see where it is moving to. To try to isolate its motion is a pretty significant thing."

If either virus turns into a form that spreads easily from person to person, a pandemic could follow within weeks. Both seem especially deadly in their current form: H7N9 seems to have about a 20 percent fatality rate, while the new coronavirus appears to have killed more than half its victims.

“In the case of the two latest threats — the H7N9 influenza virus and the new coronavirus — the number of infected people is small, and the infections are occurring thousands of miles away from the United States. Yet we should be seriously concerned about both,” Mike Osterholm, an infectious disease expert at the University of Minnesota, wrote in the New York Times on Friday.

“Our public health tools to fight these viruses are limited. We have no vaccines or effective drugs readily available to stop or treat the new coronavirus in the Middle East,” Osterholm adds. 

CDC

Influenza A H7N9 as viewed through an electron microscope. Both filaments and spheres are observed in this photo.

The H7N9 flu can spread silently, as people transmit influenza before they’re sick themselves. If the flu did mutate into a pandemic form, it would probably take at least six months to make enough vaccines to protect large numbers of people.

“It may take longer than it takes the virus to spread,” says Dr. John Treanor, a flu vaccine expert at the University of Rochester Medical Center. “The technology that we have today is such that the bulk of the pandemic disease may have already taken place before a vaccine is in place and can be used,” he added.

“The virus can spread very, very quickly. You are in a race against time.”

That happened in 2009, when the new strain of H1N1 swine flu broke out to cause the first pandemic of a new flu in 40 years. Companies raced to make vaccine but it was months before it was ready.

There are drugs to fight flu – a pill called Tamiflu and an inhaled powder called Relenza. Neither is a cure, however, and both need to be given very quickly to do much good at all.

Right now, H7N9 seems mostly confined to China and the spread has slowed. The World Health Organization reports 32 people have died out of 131 lab-confirmed cases.

“The drop-off in newly reported H7N9 cases in China may be the result of containment measures reportedly taken by Chinese authorities, including closing live bird markets, a venue where the risk of exposure to bird flu viruses can be high," the CDC says. “However it may also be a result of changing seasons, or a combination of both.”

Researchers in Hong Kong did a computer analysis of the outbreak and estimate that at least 200-500 more people have likely been infected with H7N9. The virus seems to cause serious illness mostly in people over 65 – doctors are not sure why yet.

“We estimated that risk of serious illness after infection is 5.1 times higher in persons 65 years and older versus younger ages,” Ben Cowling and colleagues at Hong Kong University wrote in the journal Eurosurveillance.

The evidence suggests that most of the patients got infected directly by birds, probably in poultry markets. So Cowling’s team took all the data and estimated how many younger people were likely to have been infected without knowing they had H7N9. "Our results suggest that many unidentified mild influenza A(H7N9) infections may have occurred, with a lower bound of 210–550 infections to date," they wrote. This would mean the virus isn’t that widespread, but which also confirms its high fatality rate. 

The coronavirus, which some are dubbing Middle East Respiratory Syndrome Coronavirus, or MERS, is a little different story. WHO says 33 infections have been reported, with 18 deaths. Experts are watching cases in France, where one patient who traveled from Dubai was confirmed to have the virus. 

A man who shared a hospital room with the 65-year-old man also has the virus, French officials said Sunday -- something that shows the virus and and does spread in hospitals. 

Officials were relieved that three health care workers who cared for the 65-year-old patient and who got sick have tested negative for the virus.

Also Sunday, WHO Assistant Director-General Keiji Fukuda could probably be passed between people in close contact, but there was no evidence of sustained "generalized transmission in communities."

Some reports suggest an outbreak in Saudi Arabia also affected people in the same hospital.

This worries Dr. Eric Toner of the Center for Health Security at the University of Pittsburgh Medical Center. SARS – severe acute respiratory syndrome – also spread mostly in hospitals. SARS spread to 29 countries in 2003, killing 775 people and making 8,000 sick before it was stopped.

“These cases, whether confirmed or not, should be a wake-up call,” Toner writes in his blog.

The good news is that SARS was stopped using good hospital hygiene. Face masks, gloves and careful disinfection prevented its spread. And SARS only spread once people were noticeably ill, unlike flu, which people can spread before they feel sick and after they feel better.

The bad news is that hospitals may have forgotten this lesson. “SARS was stopped by healthcare workers being aware of the disease, having a high index of suspicion of anyone with fever and respiratory symptoms who had recently been in an affected region, and quickly implementing infection control measures with any suspect case,” Toner says.

“Until now, all cases of MERS originated in the Middle East, but as the confirmed French case demonstrates, the virus is only a plane ride away from other parts of the world. In the 10 years since the SARS outbreak, many hospitals have become lax in their attention to respiratory precautions.”

Gabriel says he’s working to make sure this isn’t the case with U.S. hospitals. “Hygiene practices are now better than they ever have been,” Gabriel said. “We send out reminders daily.”

Related:

• WHO: New SARS-like virus can probably spread person to person
• US races to make new vaccines against bird flu
• New virus has officials worried about skimpy resources

This story was originally published on Sun May 12, 2013 9:33 AM EDT

World Health Organization (WHO) officials said on Sunday it seemed likely a new coronavirus that has killed at least 18 people in the Middle East and Europe could be passed between humans, but only after prolonged contact.

A virus from the same family triggered the outbreak of Severe Acute Respiratory Syndrome (SARS) that swept the world after emerging in Asia and killed 775 people in 2003.

On Sunday French authorities announced that a second man had been diagnosed with the disease after sharing a hospital room with France's only other sufferer.

WHO Assistant Director-General Keiji Fukuda told reporters in Saudi Arabia, the site of the largest cluster of infections, there was no evidence so far the virus was able to sustain "generalized transmission in communities" - a scenario that would raise the specter of a pandemic.

But he added: "Of most concern ... is the fact that the different clusters seen in multiple countries ... increasingly support the hypothesis that when there is close contact, this novel coronavirus can transmit from person to person.

"There is a need for countries to ... increase levels of awareness," he said.

A public health expert who declined to be identified, said "close contact" meant being in the same small, enclosed space with an infected person for a prolonged period.

The virus first emerged in the Gulf last year, but deaths have also been recorded in Britain and France of people who had recently been in the Middle East. A total of 34 cases worldwide have been confirmed by blood tests so far.

Saudi Deputy Health Minister for Public Health Ziad Memish told reporters that, of 15 confirmed cases in the most recent outbreak, in al-Ahsa district of Eastern Province, nine had died, two more than previously reported.

Saudi Arabia's Health Ministry said in a statement the country had had 24 confirmed cases since last summer, of whom 15 had died. Fukuda said he was not sure if the two newly reported Saudi deaths were included in the numbers confirmed by the WHO.

Memish added that three suspected cases in Saudi Arabia were still under investigation, including previous negative results that were being re-examined.

The first French patient was confirmed as suffering from the disease on Wednesday after travelling in the Gulf. The second patient was transferred to intensive care on Sunday after the two men shared a room in a hospital in Lille.

Professor Benoit Guery, head of the Lille hospital's infectious diseases unit, said the first patient had not been immediately isolated because he presented "quite atypical" symptoms.

He added in comments broadcast by BFMTV channel the case suggested that airborne transmission of the virus was possible, though still unusual, and that the public "should not be concerned" as there had been only 34 cases globally in a year.

Fukuda, part of a WHO team visiting Saudi Arabia to investigate the spread of the disease, said although no specific vaccine or medication was yet available for novel coronavirus, patients were responding to treatment.

"The care that is taken in the hospitals, in terms of using respirators well, in terms of treating pneumonia, in terms of treating complications, in terms of providing support, these steps can get patients through this very severe illness," he said.

Fukuda said that as far as he knew all cases in the latest outbreak in al-Ahsa district were directly or indirectly linked to one hospital.

He added that Saudi Arabian authorities had taken novel coronavirus very seriously and had initiated necessary health measures such as increased surveillance systems.

Related:

US safe from two new viruses -- so far

This story was originally published on Sun May 12, 2013 9:13 AM EDT

Erik S. Lesser / EPA for NBC News

Dr. Hunter Johnson, a pathology resident at the Emory University School of Medicine, has helped at least four patients with C. difficile infections by giving them a dose of his stool. Fecal transplants have been shown to have a 90 percent success rate of curing the potentially deadly infection.

An Emory University medical resident has taken the notion of donation to a whole new level, agreeing to provide stool samples for multiple patients who need life-saving procedures called fecal transplants.

Dr. Hunter Johnson has aided at least four people in the past year by providing doses of his healthy feces -- yes, poop -- to help cure devastating bowel infections caused by a nasty germ known as C. difficile.

“As you can imagine, it’s not the most glamorous thing,” says Johnson, 30, of Atlanta, who was recruited by his boss, Dr. Colleen Kraft. “It’s hard enough to get people to donate blood, but it’s much harder to get people to donate feces.”

Kraft, an infectious disease specialist and clinical microbiologist at Emory, turned to Johnson and other medical residents last summer, when a gravely ill lung transplant patient came down with a C. diff infection as well.

“Basically, we had been doing it using a family member or friend to donate and this patient didn’t have anyone who could help,” she said. That's where Johnson came in. 

The process worked, allowing the woman to recover from the bowel infection with the help of a stranger’s stool.

Fecal transplants are rapidly becoming a treatment of choice for recurrent C. diff infections, which strike more than 336,000 people each year and are linked to 14,000 deaths, according to the Centers for Disease Control and Treatment. 

In the procedures, stool from a healthy patient is transplanted into the colon of a C. diff sufferer to restore the balance of bacteria. C. diff infections typically occur following heavy antibiotic use, when the drugs kill healthy bacteria in the gut, allowing toxic germs to flourish.

Though they sound distasteful, fecal transplants have been racking up success rates as high as 90 percent or more. Sufferers say they recover swiftly after the transplants, returning to full health within a few days.

“I’m telling you, I can’t say enough good things about this thing,” said Tom Wilson, 76, who received one of Johnson’s stool donations in March.

Wilson, who was treated for a serious bowel condition called diverticulitis in 2006, developed a life-threatening case of C. diff last December and was severely ill for months. He tried a fecal transplant using a sample from a family member, but it wasn’t completely successful.

When he fell ill again, doctors sent the real estate developer from Alpharetta, Ga., to Emory for help. He said the notion of accepting stool from a stranger didn’t faze him at all.

“When you’re as sick as I have been, you’ll do anything to feel better,” said Wilson, who figures he’s nearly fully recovered.

Johnson said he gets a sense of satisfaction from helping -- and from knowing he’s advancing knowledge about a new kind of therapy.

He figures he’s a good donor because he’s young, fairly healthy, and is at low risk for infections. People with kids, for instance, wouldn’t be good choices because children bring home so many germs.

“They don’t want you to be eating anything too crazy, not a lot of travel, no history of gastrointestinal illness,” he said. “We can’t have taken any drugs in the recent past.

“Essentially, the best donor is someone who leads a pretty boring life," he added.

In addition, a good donor has to have predictable bowel habits and be able to perform, as it were, on demand. Johnson typically donates on the morning of a patient’s transplant. “They want it to be relatively fresh,” he said.

He provides the sample and then takes it to the lab, where it’s processed to be given to the patient. At Emory, they use a colonoscope to deliver the donation, though others use enemas or tubes that run through the nose and to the stomach.

Kraft has conducted the transplants on a case-by-case basis with hospital approval. She plans to apply for a investigational new drug application that would essentially define Johnson's stool as a useful medication. Meanwhile, she and others who perform fecal transplants are waiting for the federal Food and Drug Administration to weigh in on regulation of the promising new therapy.

Both Kraft and Johnson say they’re excited by the promise of fecal transplants to cure the misery of C. diff infections. “I became a physician to help people,” Johnson said. “To these patients, it’s a big deal.”

Still, he acknowledges that not everyone finds his altruism so intriguing.

“My wife is kind of tentatively grossed out by it,” he said. “It’s a little weird for her. But she realizes it’s a good thing.”

Related stories: 

• Fecal transplant from mom cures ailing toddler
• Sounds gross, works great: Fecal transplants cure nasty C. diff infections