Abertawe Bro Morgannwg University(CARDIFF, Wales) -- A man whose face was crushed in a motorcycle accident now has titanium cheekbones made on a 3D printer.
Stephen Power, a 29-year-old dad from Cardiff, Wales, broke his cheek bones, eye sockets, upper jaw and skull in the 2012 crash, according to a statement from the National Health Service of Wales. He had emergency surgery to save his life, but doctors were unable to reconstruct the left side of his face at the time.
“He had damaged his left eye and the ophthalmologists did not want us to do anything that might damage his sight further,” Adrian Sugar, a maxillofacial surgeon with the Center for Applied Reconstructive Technologies in Surgery, said in a statement. “So the result was that his cheekbone was too far out and his eye was sunk in and dropped.”
Once Power’s left eye had healed, doctors scanned 3D images of his face to design replica bones.
“It made sense to plan it in three dimensions and that is why 3D printing came in,” Sugar said. “The technology allows us to be far more precise and get a better result for the patient.”
The 3D replica bones were made from layers of medical-grade titanium, carefully crafted in the precise shape of Power’s own bones.
“This is really the first time we’ve taken it to this stage, where everything to the very last screws being inserted has been planned and modeled in advance -- and worked sweetly,” said Sugar.
Power’s left eye is still slightly raised, but Power said he expects it to, “settle over the next few months.”
“He has given us nine out of 10 -- a good assessment and one I agree with,” he said. “I’m glad he’s not given us 10 because if he did, we would not have any way of getting better.”
Power said he used to hide his injury with glasses that he didn’t need.
“I won’t have to hide my face away and my confidence will be back,” said Power, who also broke both arms in the crash and needed a bone graft on his mangled right leg. “I’ll be able to do everyday things – go and see people, walk in the streets, just go to any public areas.”
“To be honest I thought they did a good job in the beginning anyway because of how bad my accident was,” he added. “But from this operation I can’t really explain how well it has gone. It has just made me look a lot better. I take my hat off to them.”
iStock/Thinkstock(WASHINGTON) -- The NFL joined representatives from the NHL and medical doctors to let Congress know how head injuries are affecting American athletes from junior programs to the pros, saying they are devising safer helmets to guard against the chances of players suffering concussions.
Jeffery Miller, senior vice president for player health and safety policy at the National Football League, testified in Washington that while “football has earned a vital place in the rhythm of American life,” helmets for players have not caught up to what is necessary to protect players.
“Football helmets were designed to protect against skull fractures and they do a fabulous job of that. They were not designed to prevent against concussions, and so that sort of technology or design I know the helmet manufactures are working on it. We are not there yet and the league is doing what it can to inspire that, especially with our partnership with GE and Under Armour to get new ideas around that,” Miller said.
“The other thing we do is we do regular helmet testing in concert with our friends at the Players Association so we can inform the players of which helmets are working best.”
According to Miller, nearly 6 million kids play tackle or flag football in the U.S. Approximately 1.1 million play in high school, 75,000 in college.
And they take the hits, just like the pros.
“We take that popularity seriously, with it comes a great deal of responsibility and that’s one we embrace,” Miller said.
ABC News (STANFORD, Calif.) -- The neonatal intensive care unit is full of buzzers, bells and the steady hum of technology. The machines that line the rooms are safeguarding the most fragile human lives. Lives like baby Oliver and his twin sister, Skye, who were born three months premature.
How reassuring, then, is the sound of a friendly voice? The look of a friendly face? Babies in the neonatal intensive care unit cling to moments like that, but sometimes parents and nurses can’t be there to offer the constant reassurance.
That’s where Pat Rice comes in. He is a volunteer “cuddler” at the Lucile Packard Children’s Hospital at Stanford.
He and his wife, Claire Fitzgerald, have been cuddling babies there for 16 years, including Oliver and Skye. His deep voice helps soothe the babies. He joked someone once told him it sounded like a tuba.
“Apparently the voice helps make a difference. I don’t know why,” said Rice. “But I find that it works pretty well.”
The nurses said that the cuddles have an immediate impact for these infants. It can even be measured. Their blood oxygenation starts to climb, meaning the baby is relaxed and is breathing deeper.
The doctors say cuddling leads to better tolerance of pain, more stable body temperature and even stronger vital signs.
Asked whether he believes that a hug sometimes can be the best medicine, Dr. Ronald Cohen, the medical director of the intermediate care nursery at Lucile Packard Children’s Hospital, said: “Absolutely.”
“I’m sure if you remember back to your own childhood there were plenty of dents, dings, scrapes, and bruises for which you found out mom’s hug was the best medicine,” Cohen said.
Oliver and Skye’s parents, David and Seyi McLelland, agree.
“Obviously holding them is a really big deal. And I don’t get the chance to be here as often as I’d like, so it kind of cuts the guilt factor for me quite a bit,” said David McLelland.
“You can’t be here 24 hours a day,” Seyi McLelland said. “And it’s very comforting knowing that while you’re not here there’s someone holding your child. And genuinely loving your child.”
“Yes, I’m taking all the cuddlers home I keep telling them,” Seyi McLelland said. “They’re coming home with me.”
Claire Fitzgerald can empathize. She had a sick baby herself, who is now all grown up with kids of his own.
“You know these people are scared to death,” Fitzgerald told ABC News.
Fitzgerald and Rice said they often comfort parents whose babies are admitted to the NICU because they can share stories about all the babies they have cuddled who are now home and thriving.
Rice said that at his granddaughter’s soccer game recently, a little girl came up to him and gave him a big hug — it was a child he had once cuddled in the hospital.
But being a NICU cuddler is not always easy. A few weeks ago, Fitzgerald turned up for her cuddling shift to find an empty cot.
“I’ve done this a long time, but the tears just rolled from my eyes. It’s just hard to see one go,” said Fitzgerald.
Most of the babies at the Lucile Packard Children’s Hospital make it thanks to intensive medical intervention and the miracle of the human touch.
iStock/Thinkstock(HARTFORD, Conn.) -- Five arrests in Connecticut have been linked to a tainted form of heroin responsible for an alarming death toll throughout the Northeast.
Police and federal agents moved in on a residence in Hartford where they seized more than 2,000 glassine bags of heroin laced with the powerful narcotic fentanyl. They also seized marijuana, cash and two cars. The heroin bags were stamped with the names New World, Bingo 9 and Shine.
“The Hartford Police Department will continue to work with local, state and federal partners to investigate this matter as well as inform the general public and media in the Hartford Region of the dangers of fentanyl/heroin over doses,” said Deputy Chief Brian Foley.
Juan Baez, Carlos Cardona and Christopher Cardona were charged with federal narcotics trafficking violations. Romanita Gomez and Angel Gonzalez were charged with possession.
The arrests were part of an ongoing investigation that police linked directly to “the increase in regional overdose incidents.”
Earlier this week Attorney General Eric Holder said overdose deaths from heroin constitute “an urgent and growing public health crisis.”
The chief medical examiner in Connecticut said heroin deaths are up 48 percent since 2012. Neighboring states have also seen a spike due to a heroin-fentanyl mix. And for the first time Hartford Police are seizing glassines that contain fentanyl only, a development one source called “scary.”
Fentanyl is often used by cancer patients and generally administered as a lollipop, spray or patch which gives a slow dose through the skin. What police have now learned from this is that fentanyl is being produced in powder form specifically for heroin distribution.
Police also say some users are becoming aware of the fentanyl taint and have told officers they’re cutting back their doses. Even some dealers are advising users to cut back.
iStock/Thinkstock(NEW YORK) -- Dads in delivery rooms are a pretty common fixture these days. But now a New Jersey Superior Court Judge has ruled that expectant moms have the legal right to keep dads out.
The ruling was a victory for Rebecca DeLuccia, who became pregnant by Steven Plotnick, the plaintiff in the court case, last year. The couple split before their daughter was born last November.
Plotnick didn’t want to miss the first moments of his baby’s life, so he went to court.
“His main concern was seeing his daughter when she was born and being able to bond with her,” Laura Nunnick, Plotnick’s attorney, told ABC News. “What he asked was to be in an area near where the delivery room was.”
The judge, Sohail Mohammed, ruled in favor of a mom’s right to privacy in the delivery room: “the court…finds that requiring the mother to notify the father that she has gone into labor and or require his physical presence would be an undue burden on her. ...The court finds that they overwhelmingly favor the mother’s interests over the father’s application for his notice and appearance at the child’s birth.”
The court hearing and ruling happened last November -- around the same time DeLuccia went into labor and delivered a girl.
Mohammed indicated in his opinion on the ruling that he was afraid Plotnick’s presence could put undue stress on DeLuccia during the birth.
Nunnick says her client will not appeal the judge’s decision in the case, believed to be the first of its kind to be litigated in the United States.
“This case clearly applies to unmarried couples,” said Nunnick. “How it extends to married couples, I don’t know yet.”
Nunnick adds her client did work out an agreement with the mother to see his daughter.
U.S. Consumer Product Safety Commission(WASHINGTON) -- The Consumer Products Safety Commission (CPSC) has officially announced a recall of the Fitbit Force because of thousands of complaints of itchy rashes and burns on users’ wrists while wearing the wireless wristband activity tracker.
The recall announced Wednesday is for one million units sold in the United States and about 28,000 units sold in Canada.
The CPSC received about 9,900 complaints of the wristband causing skin irritations and about 250 reports of blistering.
But Fitbit Force user Kim Reichelt, who started her own database of complaints after she claimed her wrist suffered burn-like rashes, said she has counted many more users with blistering.
“The magnitude of the impact was not even properly described,” said Reichelt in an email to ABC News. ”There are close to 1,000 people who have reported blistering on [Fitbit's] own forum, and that’s based on posts from fewer than 10% of those who have had reactions.”
Another user agreed.
“The numbers look off,” said Nisha Paige of Alexandria, Va., who loved the device until she noticed an itchy rash emerge on her arm, which she initially thought was a spider bite. “[Fitbit says] only 250 people reported blisters but we have seen more reports of that on the forum. I still don’t feel this recall does this issue any justice, but at least it is a legitimate recall.”
The CPSC recall notice attributed the reaction to “the stainless steel casing, materials used in the strap, or adhesives used to assemble the product, resulting in redness, rashes or blistering where the skin has been in contact with the tracker.”
In a statement, Fitbit said that “a thorough analysis by independent labs and medical experts revealed that the reactions reported by a small percentage of Force users were likely the result of allergic contact dermatitis.”
The company added it has been working with medical experts to figure out the cause of the skin issues, just as it pointed out that the surgical grade stainless steel in the device met the most stringent regulatory standards.
The maker of what’s been called the most popular fitness tracker on the market had previously issued a voluntary recall of the $129 Fitbit Force device on Feb. 21, offering refunds to customers who wanted one. The company also stopped selling the device. But many users did not hear about that recall because it did not go through official government channels, like Wednesday’s recall, which now makes it illegal to sell or resell the Force device.
A spokesperson from the CPSC said the agency “expects Fitbit to use their social media platforms, including Twitter and Facebook, to inform consumers about the recall of the Fitbit Force. In addition, Fitbit should use their customer contact information to directly notify affected consumers about this important recall.”
A visit to Fitbit’s homepage revealed no information about the recall, but after clicking on the “Products” tab and selecting “Force Wireless Activity and Wristband,” a pop-up revealed details of the recall along with a request to sign up for more information on “our next generation tracker.”
The company said it will be emailing all Force users over the next few weeks so that they are aware of the recall and offer a refund for full retail price. In the meantime, Fitbit Force users should call 1-888-656-6381 or visit fitbit.com/forcesupport for information on how to receive a refund for their recalled device.
KOMO(NEW YORK) -- At only 13 months old, baby CJ DeVore has no idea what it took to bring her into the world: a buried bucket of money, a donated embryo, a surrogate and two people who weren’t ready to give up on their dream of being parents.
After eight years of trying and failing to become parents, Charlie and Matt DeVore thought they were out of options. They’d tried infertility procedures, and when those didn’t work, they tried adoption. But that fell through, too.
“I was trying to decide if I could just walk away,” Charlie DeVore told ABC News. “To put that much money into something and have it fall apart is devastating. You don’t have that money to go through the next adoption.”
Then Matt DeVore’s uncle died in a car accident, so the couple drove to be with the rest of his family. The uncle was a farmer who buried money in buckets, and the rest of the family thought Charlie and Matt DeVore should have the first bucket to try again and have a baby.
Matt DeVore’s sister volunteered to be a surrogate, but Charlie DeVore’s eggs had been problematic and didn’t get large enough to fertilize. And after a hysterectomy, she only had one ovary left, which was scarred.
“I was like, ‘Thank you so much, but I don’t have a baby to give you,’” Charlie DeVore said.
That’s when the sister came back to suggest embryo adoption through a program called Snowflakes. Charlie and Matt DeVore had never heard of it.
Here’s how it works: When a couple undergoes in-vitro fertilization, doctors fertilize several of their eggs in a lab. Once they become embryos (not all of them do), doctors usually only implant the healthiest two or three embryos into the mother in the hopes that she will become pregnant. The remaining embryos can be frozen to be implanted when the couple is ready for another baby. A couple can also donate their frozen embryos.
According to the Nightlight Christian Adoptions, it founded the Snowflake Embryo Adoption program in 1997. Since then, 366 “snowflake babies” have been born. Snowflake is one of a handful of organizations to get federal funding for embryo donation, which include RESOLVE, Inc. and Bethany Christian Services.
The DeVores' embryo adoption worked for them. They were matched with a donor, and CJ was born two years later after being carried by her aunt, who served as a surrogate. She’s now 13 months old and has even met her biological father, Charlie DeVore said.
But embryo donation is a controversial topic often tied to the abortion debate, bioethicists say.
New York University bioethicist Art Caplan wrote an article in the New England Journal of Medicine in 1996 that may have accidentally sparked the embryo adoption movement. He suggested using the thousands of abandoned frozen embryos in fertility clinics nationwide to study stem cells. Why go through the “morally problematic” task of creating embryos for this research when they already existed but had been abandoned?
But people who viewed embryos as people didn’t like this idea, he said.
“The right-to-life movement said ‘We don’t need to use abandoned embryos in research. We can put them up in adoption and have couples adopt them,’” Caplan said. “But it’s not like every embryo is a person. Many embryos are mis-wired or genetically malformed so they can’t become anything. ...It’s also true, by the way, in the natural making of embryos -- in bedrooms or the backseats of cars -- that many of them don’t work right. There’s probably 50 percent embryo loss just naturally.”
He said the longer an embryo is frozen, the more likely it is to have problems. In addition, he said the demand for embryo adoption is likely very low considering that couples often chose to undergo in-vitro fertilization instead of adoption because they want to have a baby with their DNA.
Federal funding for programs like Snowflake started during the George W. Bush administration, said Dr. Jeffrey Kahn, a professor at the Johns Hopkins Berman Institute of Bioethics. But at the same time, there was a ban on doing anything that would harm or destroy an embryo. It was officially called the Dickey-Wicker Amendment but became known informally as the “embryo research ban.”
In addition, federal dollars could not be used for anything the public deemed morally objectionable, which is why they were neither used to directly fund abortions or go toward stem cell research, Kahn said.
"This was a way of actually doing exactly that, using federal dollars to fund a quite controversial program around the use of human embryos -- but the flip side," Kahn said
The funding for embryo adoption peaked in 2009 and 2010, with $4.2 million each year, but these programs have been defunded over the last several years. In 2013, they received only $980,000, according to the U.S. Department of Health and Human Services.
Courtesy Penn Vet New Bolton Center(PHILADELPHIA) -- My Special Girl, an 11-year-old red thoroughbred, will soon deliver her first foal, and anyone with an Internet connection can witness the live birth via the live Foal Cam in her stall at the neonatal intensive care unit at Penn Vet’s New Bolton Center outside Philadelphia.
So far, tens of thousands around the world have visited the site, and once the little one arrives, the public is invited to participate in a naming contest.
The mare, a former race horse and surrogate mother, was due in mid-March after a typical 340 days, but because gestation length is unpredictable in the world of horses, the foal could be born in 10-and-a-half months or 13 months.
In horses, birth takes place quickly and usually at night, so the foal can escape quickly from potential predators. The foal will stand up and nurse within the first hour and can trot and canter by the next day. The newborn’s legs are almost as long -- up to 90 percent as long -- as the adult parent.
Equine fertility is also different from human reproduction, so experts from the University of Pennsylvania's Medical School are working alongside veterinarians to perfect in vitro fertilization in the lucrative field of horse breeding.
Penn Vet is one of only a handful of veterinary hospitals in the United States that is pioneering a procedure that is successfully used to treat infertility in humans -- intracytoplasmic sperm injection, where a single sperm is injected into a mature egg. Within eight days, the developed embryo is implanted into a surrogate mare.
“It’s a very technical procedure and it’s different in horses than in humans,” said Regina Turner, associate professor of large animal reproduction at the New Bolton Center. “It takes a big financial investment and technical expertise.”
“In horses, IVF -- mixing sperm and egg in a dish -- just doesn’t work very well,” she said. “There has been a lot of research with abysmal results.”
Human and rat fertilization occurs easily in IVF, but horse sperm has to mature in a process known as capacitation.
“There is a whole different signaling mechanism in a stallion’s sperm,” Turner said.
My Special Girl’s foal was conceived with a donor egg and the frozen sperm of a dead stallion, both from New Bolton Center. Her foal will be the first at Penn Vet.
Turner worked closely with Matthew “Tex” VerMilyea, director of the Assisted Reproductive Technology and Andrology Laboratory at Penn Fertility Care at the University of Pennsylvania.
“ICSI is very commonly used in the human field when we treat infertility cases when there are low sperm numbers of poor morphology or poor motility,” said VerMilyea. “We use the procedure to bypass the natural binding of the sperm to the egg.”
In conventional IVF, an egg and sperm is placed in a Petri dish and fertilization takes place. But in ICSI, a needle pierces the egg, or zona pellusida, to deliver the sperm. But in some animal eggs, the needle can damage the shell.
“But a horse egg is much more elastic than a human egg and you can’t just shove in the needle, so I use a laser,” he said. “It makes a couple of holes to give a head start for implantation to occur.”
Typically, animal research, especially in the area of IVF, has helped advance human medicine, but here the tail is wagging the horse, according to VerMilyea.
“A lot of things were done in rabbits and mice as well as monkeys and that has transitioned over to what we do on the human side of things,” he said. “But the horse is a different beast. Assisted reproduction is a bit more delicate and the massive size of the animal makes things all the more challenging.”
ICSC can be used for race horses to continue the legacy of winning stallions or for mares that might have a blockage in the oviducts, a severe infection of the uterus, or a tear in the cervix from a previous foal.
The sperm from a valuable stallion can be frozen and kept in storage tanks and, even years after its death, vets can retrieve a small amount to use for fertilization.
“There is a limited amount, and when you breed a mare the standard way you can use quite a bit each time," VerMilyea said. "With ICSI, you can shave off a tiny bit in a frozen dose, almost like a drop, and use a single sperm to inject into the egg. It extends the sperm.”
My Special Girl was donated when she was 3 or 4 to the New Bolton Center, “probably because she was not very fast,” and is part of its “teaching herd,” said Turner.
She and 14 other mares are used for student vets who are learning to do physical exams.
“The mares are selected for their sweet temperaments and patience,” she said. “You need a calm horse to put on the halter and handle them and walk them.”
As the ICSI technology takes off, breeders could pay $6,000 to $8,000 for the procedure, according to Turner.
“Breeding is a big deal in horses,” she said. “It’s one of the few domestic species where babies are worth enough to justify a technique like this.”
Andrey Armyagov/Thinkstock(NEW YORK) -- Urinating in a public swimming pool doesn’t conjure up the most delightful of images for obvious reasons.
However, the 20 percent of Americans who admit they’ve done it -- and that’s probably a conservative estimate -- are also creating a health risk, according to researchers from the China Agricultural University and Purdue University.
Just how bad is it to pee in a pool loaded with chlorine? Very bad, say the researchers, who point out that when uric acid interacts with chlorine, it creates a gas called cyanogen chloride that when inhaled, can potentially do damage to the central nervous system, heart and lungs.
And that’s just one of the dangerous chemical reactions. The other is nitrogen trichloramine or NC13 that may result in severe lung injury.
Study author Jing Li says more chlorine would help to reduce the formation of these gases but ideally, people should not use pools as their personal urinals.
As for other unhealthy habits, 43 percent of swimmers acknowledge not showering before taking a dip in a public pools, 11 percent have swam with a runny nose and 6 percent say they’ve gone swimming while sick with a cold.
33ft/Thinkstock(NEW YORK) -- Much has been written over the years about artificial playing surfaces and how they pose an injury risk to athletes compared to natural grass.
But are these artificial surfaces made from synthetic turf or grass as bad as they’ve been made out to be?
Research presented at the 2014 Annual Meeting of the American Academy of Orthopaedic Surgeons appears to dispel those concerns, based on a study of Italian soccer players during the 2011-2012 season.
The study’s authors say that after playing an equal amount of time on real and artificial surfaces, there were 23 injuries on the synthetic turf per 1,000 hours of play and 20 injuries on grass over the same time frame.
These findings suggest that the difference in injury rates between the two surfaces was negligible. Most of the injuries were simple muscle strains and the study's authors say that just three injuries could be directly attributed to the artificial playing surface.
iStock/Thinkstock(NEW YORK) -- There's been a spike in the number of children taken to emergency rooms for swallowing dangerous drugs, and, in a surprising number of those cases, those pills belonged to grandparents, a new study finds.
Children under five years old are rushed to the emergency room 64,000 times a year from medications they got at home. And, in 38% of these hospital visits, the medications belong to grandparents.
According to Kate Carr, [resident of Safe Kids Worldwide, this percentage may be so high because today more grandparents are living with their families.
"There's been a 23% increase since 2005, and we know that older adults take more medicine," Carr added.
Aimee Hardy(NEW YORK) -- A dying 7-year-old boy will get the unapproved drug his family has been pleading for.
Josh Hardy has survived cancer four times, his parents said, but he’s been in the intensive care unit since January fighting a virus that causes the common cold. They say their best hope for Josh’s survival is an unapproved anti-viral drug called brincidofovir, but the company that makes it, Chimerix, has said it can’t give it to him.
The Hardys launched a campaign, including several online petitions to change the company’s mind. And it worked.
"The one thing I would want to share with America is thank you so much for the love and support," Josh’s mother, Aimee Hardy, told ABC's Good Morning America.
Chimerix announced that Josh’s story accelerated talks with the Food and Drug Administration, allowing it to launch a 20-patient open-label clinical trial Wednesday. Josh will be the first patient and is expected to receive the drug within 48 hours.
The boy received his first cancer diagnosis when he was just a baby: Aggressive rhabdoid tumors in both kidneys, Hardy said. He went through surgery, chemotherapy and radiation, but the cancer returned in his thalamus gland and then his lung.
Then, after nearly four years of being cancer-free, Josh received bad news in November 2013, Hardy said. He had myelodysplastic syndrome -- the same precancerous bone marrow disorder that ABC News anchor Robin Roberts was diagnosed with in 2012. This can be caused by cancer treatments.
Josh underwent a bone marrow transplant to remedy the disorder, but he developed graft versus host disease -- meaning the new cells started to attack his body, Hardy said.
"He was in complete heart failure and kidney failure and went into the ICU on January 14," Hardy said.
To stop it, Josh’s doctors at St. Jude Children’s Hospital in Tennessee suppressed his immune system with drugs, allowing his heart and kidneys to start healing. But with a weakened immune system, Josh came down with adenovirus, a common virus that causes colds but can also be much more serious, Hardy said.
In Josh’s case, reawakening his immune system to fight the virus could bring back his graft versus host disease, so doctors gave him an antiviral medicine to get rid of the adenovirus. But the drug was toxic to his kidneys and wasn’t working, Hardy said.
"He’s at a physical standstill," Hardy said.
That was when Josh’s doctor at St. Jude suggested brincidofovir, a drug that researchers at Chimerix, a small North Carolina drug company, have been developing for the last 14 years.
St. Jude had been involved in a clinical trial of brincidofovir in which children who had undergone bone marrow transplants and had early adenovirus infections took the drug and were able to decrease the amount of virus in their bodies.
But Dr. Hervé Momméja-Marin, Chimerix vice president of clinical research, said the drug has not been proven to do this in more advanced adenovirus cases -- like Josh’s. Josh has now had his infection for two months.
Chimerex President and CEO Kenneth Moch said on Monday -- before the creation of the 20-patient trial -- that giving the drug to Josh would mean they would have to give the drug to the hundreds of other patients hoping to get it under the FDA's compassionate use rules, which allow patients to get drugs even if they aren’t enrolled in clinical trials.
"We all have great compassion for this child," Moch said. "We spent our lives trying to develop new medications for patients just like Josh…We need to make sure to get this drug available as soon as possible to as many people as possible."
He said in a statement Tuesday evening that the 20-patient trial in which Josh is involved underscore's Chimerex's mission.
"Being unable to fulfill requests for compassionate use is excruciating, and not a decision any one of us ever wants to have to make," he said in the statement. "It is essential that each individual in a health crisis be treated with equal gravity and value, a principle we have upheld by pursuing further clinical study of brincidofovir that will inform its use in adenovirus and other serious DNA viral infections."
New York University bioethicist Arthur Caplan said the issue is not merely about a family pleading with a pharmaceutical company. He said the tiny company likely has many things working against it that prevent it from offering its drug to patients outside of clinical trials.
The company likely didn't have the resources to develop to a broad compassionate use program, Caplan said, and if it did and patients died -- even of unrelated causes -- that could hurt the drug’s chances of getting approved by the Food and Drug Administration. Chimerex declined to comment on these issues.
“Month after month, these cases come up of families seeking drugs or medical devices in dire circumstances appealing for compassion,” Caplan said. “We’re treating it as if it’s standoff between a desperate family and a little company. It isn’t.”
MANAN VATSYAYANA/AFP/Getty Images(NEW YORK) -- Tension and frustration is mounting as families wait for any morsel of news about the whereabouts of Malaysia Airlines Flight MH379 and the fate of their loved ones. Mental health experts say it is the not knowing that compounds their unresolved grief.
It’s been four days since the flight between Kuala Lumpur and Beijing went missing with 239 passengers and crew on board. An international search of large swaths of ocean on either side of the Malay Peninsula has turned up no evidence of the lost Boeing 777.
“The hardest thing for human beings to deal with is the unknown,” said Ann Rosen Spector, a clinical psychologist from Philadelphia, who specializes in grief. “If you look at science, religion or logic, it’s about explaining the unknown. We always want to complete the circle. It’s like a scab is ripped off every time another piece of information takes away the hope.”
“First of all, they are dealing with conflicting reports,” she said. “Every time you start to hold on to one piece of information, there is something else that is 180 degrees different. They don’t have any place to put their anger or pain and keep getting the hope that something else will happen, a miracle to undead the person.”
Conspiracy theories -- from terrorism to a potential hijacking or even pilot suicide -- fueled the rumors as families waited for news in Beijing and Kuala Lumpur.
Some relatives held onto hope, telling authorities that they were able to call the cellphones of their relatives, and were not sent to voice mail, possible proof that they were still alive. Others said they found their instant messenger accounts on the Chinese online service QQ were active.
“Death is always something hard to wrap your head around -- the finality of it -- and every variable that takes you away from what would bring closure is that many degrees harder,” said Rosen.
She cited the forced disappearances of an estimated 30,000 people in Argentina in the 1970s and 1980s, as well as the confusion about survivors after the World Trade Center terrorist attacks in 2001.
“It’s always hard when you can’t complete the rituals and don’t have a body,” said Rosen. “The same thing happens when war servicemen go missing -- you don’t know where they died or how they died and you are left with the idea that they will return one day.”
Kenneth Doka, a professor of counseling at the College of New Rochelle in New York, said that families desperate for information, they “want a story that makes sense.”
“Whenever there is a sense of trauma, people want to have a narrative, a sense of what happened and why it happened," he said. “It’s an unfinished story when you have unanswered questions. It complicates the grieving.”
Narratives, particularly heroic ones, can help people deal with trauma.
When United Airlines Flight 93 crashed into a field Shanksville, Pa., after terrorists hijacked the plane on 9/11, passengers reportedly fought to regain controls by breaching the cockpit and overpowering the flight crew. Todd Beamer’s now infamous words, “Let’s roll,” gave families of the 44 passengers who died a way to embrace the loss, according to Doka.
“It turned the story from passive victims to heroic status,” he said. “And while that doesn’t mitigate the death, it still gives people a sense of here is what happened, and how it happened and what the loved one probably experienced. It provides -- and I hate to use that word -- closure.”
“We just don’t know what happened [to Malaysia Airlines Flight MH370],” said Doka. “If the plane plunged into the sea and passengers only knew for a minute they would die, or if there was an ongoing terrorist attack of hijacking and you can see them living with the anxiety, it’s harder to cope.”
Regardless of the outcome of the investigation, passenger families will need support, he said.
“Counselors are there doing first aid, being there with families and allowing them to ventilate. They are validating their feelings. What the airlines should be doing is trying to convey as much information as they can verify to provide a sense of, 'We care about this and we are with you,'" he added.
“What is important is to provide a cocoon of safety and security around these people -- and good communication,” said Doka. “They need good communication and not a conspiracy of silence.”
standwithhope.com(NEW YORK) -- Peter Rosenberger’s garage was piled high with body parts for six years. Stacks of legs littered the floor, arms were draped across desks and boxes of hands sat on a shelf.
“It was a freak show,” Rosenberger recalled. “A freak show with a purpose.”
Rosenberger, along with his wife, Gracie, has run Standing With Hope since 2002. The nonprofit organization gives prosthetic limbs a second life after a first owner has outgrown them or died.
Gracie herself is a double amputee. She had a car accident 30 years ago when she was 17 and after nearly 80 surgeries, the doctors could no longer save her legs. The couple was inspired to start the organization during one of Gracie’s many hospital stays, after watching a documentary on Princess Diana’s work with landmine victims.
Any part of a prosthetic that touches the skin, particularly the socket that fits into the amputated joint and the sock liner that covers the remaining limb, cannot be reused in this country, according to U.S. law. The majority of unwanted artificial limbs are discarded. Many wind up in landfills or being repurposed as lamps or planters, Rosenberg said.
In 2011, the Rosenbergers moved their main operation out of their garage and to the Metro Davidson Detention Facility in Nashville, Tenn. Now half a dozen inmates disassemble and ship about 500 limbs a year to Ghana. There, local technicians trained by the organization reassemble the components to create a custom fit them for waiting patients, for free.
“We chose Ghana because we needed to find a place with little civil unrest and a stable government,” he said. “Once you fit someone with a prosthetic, they are a patient for life.”
Standing with Hope is just one of several charities that focus on recycling whole prosthetic limbs and prosthetic parts for use in developing countries. Limbs for Life director Lucy Fraser said her organization sends 500 to 700 limbs a year overseas, mainly to poor South American and African countries. As she pointed out, an upper-extremity prosthetic can run upwards of $4,000 and a prosthetic leg, more than $8,000. In many parts of the world, that’s unaffordable.
“The only way those in need have a chance of getting one is if one is donated,” she said.
Fraser said the majority of limbs come from family members who want some part of their loved one to have a second life. Others come from prosthetic companies like Next Step Bionics that pack up unused and reclaimed prosthetic limbs and parts once a year for donation.
Most are for the lower extremities because that’s the most common amputation site. Her organization accepts all limbs for donation but focuses on prosthetic legs with simple designs, few moving parts and no sophisticated computerized robotics.
“Many countries don’t have the infrastructure or expertise to maintain anything too complicated, so we often take parts from the computerized models and send them for reuse by American companies,” she said.
Rosenberger said that Standing With Hope’s job doesn’t stop once the prosthetic finds a new owner. They do constant follow up with both the patients and caregivers. Recently, they’ve been able to set up teleconferences for doctors here in the United States to check up on their patients in Africa. And when his son Greyson, now 22 years old, was a middle schooler, he created a realistic prosthetic leg cover out of used bubble wrap and packing tape.
Despite growing the charity and moving his operation, Rosenberger said, he still keeps a basket of feet in his office.
“You never know when you’re going to need a left foot or a right foot,” he said. “I like to stay footloose, so to speak.”
File photo. iStock/Thinkstock(NEW YORK) -- Coldwater Creek in Missouri is not officially the home of a cancer cluster, but Jennifer Smith begs to differ.
At 41, Smith has already been through a host of medical problems. She had endometriosis as a teen, suffered four miscarriages in her 20s and needed to undergo a complete hysterectomy by age 29. Four years later, she was diagnosed with incurable chronic myelogenous leukemia.
Like many others who grew up in North St. Louis County, Mo., Smith suspects her medical bad luck wasn't luck at all; she thinks it's the result of growing up along a creek contaminated by radioactive material -- the result of uranium processing during World War II. The creek frequently flooded, bringing its contents into her family's vegetable garden and flooding her basement bedroom.
"It was nothing to me to go out in the garden and pick tomatoes if I played outside," she said. "I don't want to be fear-mongering to people, but the word's got to get out. People have got to know."
Although the Missouri health department acknowledges that the radioactive waste is real, and the military acknowledges that an environmental clean-up is still under way, officials still say there's not enough proof to say it's caused a rise in cancer cases.
The Missouri Department of Health and Senior Services conducted a study of cancer cases in the region from 1996 through 2004 and determined that leukemia and thyroid cancer cases weren't statistically higher than expected -- and cancers that were more prevalent couldn't be linked to environmental factors. The researchers suggested that "promoting healthy eating, regular physical activity, and tobacco control" would help, according to the study.
"These things are very hard to prove," said Dr. Reginal Santella, who co-leads the Cancer Epidemiology program at the Herbert Irving Comprehensive Cancer Center with Columbia University and did not work on the Missouri study. "One in three of us is going to get cancer."
Santella said cancer clusters are hard to prove because there are so many variables involved. What was the environmental carcinogen? How was the individual exposed? How long did it take to cause cancer?
"So few -- a fraction of a fraction of a fraction -- of these are valid," she said. "It's just wastes enormous amounts of money."
Despite funding from the National Cancer Institute, for instance, the Long Island Breast Cancer Study Project, which was tasked with investigating purportedly elevated cancer cases on Long Island, hasn't concluded whether it is indeed a cancer cluster, even though researchers have been working since 1993.
A successful lawsuit, the movie Erin Brockovich, and the Environmental Protection Agency's conclusion that hexavalent chromium causes cancer wasn't enough to convince the California state epidemiologist that Hinkley, Calif., is the home of a cancer cluster.
For those who lived along Coldwater Creek, the state's study wasn't good enough for a group of residents who connected on Facebook.
At the helm of the group is Janelle Wright, 43, who realized in 2011 that a lot of her childhood friends were dying. The music teacher died of leukemia, she recalled. Her grade school crush had thyroid cancer.
"There were four cases of brain cancer in a six-house radius," Wright said. "That was really weird."
So she started to make a list. Then one day she came across a Facebook group started by another old neighbor called "Coldwater Creek -- Just the Facts." Its handful of members seemed to have the same hunch Wright had -- that something was odd about the cancer cases. She and about 20 other people joined it right away. The group now has more than 9,000 members.
"Those 20 people immediately had a sixth sense that something was not right," Wright said, remembering how everyone seemed to be fine at their 20th high school reunion just a few years earlier. "How could things go wrong so fast?"
Then someone learned the Army Corps of Engineers was already tasked with cleaning up radioactive waste that had been there since the 1940s connected with the Manhattan Project. Not only was the government removing contaminated soil, it was dredging the creek for contaminated sediment, according to an official military fact sheet about the cleanup.
Wright had no idea, but radioactivity seemed to explain why it took so long for the cancer cases to crop up. Radiation exposure tends to have delayed health effects. It also explained why they were seeing second generation problems, she said.
"They're killing 50,000 people in Hiroshima with this stuff," she said. "What do you think it's going to do with us?"
The list snowballed, but the state's investigation didn't provide the results they wanted, in part because it missed many of her peers who moved away but lived in the area for several decades and got cancer, Wright said.
So Wright and her group started their own investigation, finding people who'd moved away using social media and asking them to participate in a survey. Ultimately, they found thousands of cases of cancer.
They found 3,300 instances of cancer in all, including 95 brain cancers and 37 appendix cancers, which are considered rare.
The state health department told ABC News that it isn't commenting on their survey, however.
Smith, whose house backed up to the creek, said she will be on oral chemotherapy for the rest of her life because of her leukemia. She wasn't included in the study because she moved away before 1996, and says she hopes state researchers will reconsider their study findings.
"I'm willing to fight the battle," she said. "It's worth fighting."