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Saturday, February 23, 2008

The insurer pulled the rug out from under her: Lawsuit on insurer’s refusal to pay for breast cancer treatment

A Southern California woman who had her medical coverage canceled as she was undergoing treatment for breast cancer was awarded more than $9 million Friday in a case against one of California's largest health insurers.

Patsy Bates, a 52-year-old mother of two, had previously been insured with another company but was persuaded to switch to a Health Net policy after an agent suggested she could save money.

She said she had undergone surgery to remove a tumor and had received her first two chemotherapy treatments when doctors stopped treating her because her bills were going unpaid.

Patsy, a hairdresser from Lakewood (Los Angeles County), had been left with more than $129,000 in unpaid medical bills when Health Net Inc. canceled her policy in 2004. The insurer contended that she had failed to disclose a heart condition and lied about her weight when she applied for the policy in July 2003.

But arbitration judge Sam Cianchetti ordered Health Net to pay her medical bills, plus $8.4 million in punitive damages and $750,000 for emotional distress.

"It's hard to imagine a situation more trying than the one Bates has had to endure," the judge wrote in his findings. "The rug was pulled out from underneath, and that occurred at a time when she is diagnosed with breast cancer, one of the leading causes of death for women."

Health insurers have come under fire from state regulators, attorneys and advocates for using mistakes or omissions in a member's application to justify canceling coverage after a policyholder becomes ill.

Friday's award marked the first punitive damages ordered by a judge in a case against an insurer for rescinding policies. Hundreds of cases in California have been settled quietly in confidential agreements.

"This punitive award will do more than anything to stop the shameful practice of post-claiming underwriting," said Bates' attorney, William Shernoff. "Other health insurers will obviously have to hear the message that the practice of canceling people's health insurance after they become sick will not be tolerated by the public."

Health Net officials released a statement Friday saying the insurer will rescind no policies in the future without a binding, third-party review process.

Health Net also said it would conduct a review of its practices and the way its brokers and agents are trained. The company said it is working with state regulators and will make additional announcements in the coming weeks.

Friday's award capped a difficult week for the insurer, which included being sued by the Los Angeles city attorney on claims of unlawful and deceptive business practices in connection with its rescission practices. City Attorney Rocky Delgadillo also said the company illegally ran an incentive program in which it paid bonuses to an administrator for meeting policy-cancellation targets.

"I don't have anger toward the company," said Patsy, whose cancer is in remission but who has some health problems. "I hope what they're saying is true, and that they're going to change their policies and take care of the people they insure."

Advice: Avoid insurers whom consumers frequently identify as refusing to pay for care when their beneficiaries get sick. Call your local Better Business Bureau and state Attorney General's office to find out their track record.

Browse for similar stories in our index at the very bottom of this page, or read a an Insurance Warrior story.

Thanks to the San Francisco Chronicle staff for today's source story.

Friday, February 22, 2008

Susan Sontag's choice for aggressive care

David Rieff's story on his mother, Susan Sontag
What my mother wanted – which was to undergo any treatment, no matter how terrible, that promised a cure for her disease – would probably have been viewed skeptically by a physician schooled in what Dr. Jerome Groopman calls the "bean counting" of evidence-based medicine. But doctors like Nimer and Groopman hold that their mission is to try to treat their patients as their patients want to be treated until doing so can be called with assurance (rather than in terms of probability alone) medically futile.

Obviously, there is a cost to this. In opting for treatment – in her case, a bone-marrow transplant – my mother suffered far more physically than she would have had she opted for palliative care alone. But in honoring her wishes, without for a moment understating the risks, her doctors opted for treating her in the full, human sense of the word.

Advice: Find a doctor who takes to heart your preferences about risks and benefits, and the degree of aggressiveness you want in your care.

Browse for related stories in the index at the very bottom of this page, or read another story from David’s book.

Thanks to David Rieff for the source story in Sunday's New York Times Magazine, drawn from his book, Swimming in a Sea of Death: A Son's Memoir.

Thursday, February 21, 2008

This nonsensical situation: Prohibition on personal injury lawsuits about medical devices

In 1994, the U.S. Food and Drug Administration issued its pre-market approval for the use of a balloon catheter made by Medtronic for widening coronary arteries. Two years later, Charles Riegel underwent angioplasty – a form of heart surgery that uses a special balloon device to mash plaque against the walls of the artery to allow blood to flow more freely. The balloon catheter burst while being inserted, injuring him. He filed a lawsuit against Medtronic, the device maker, but the case was dismissed. He died after the lawsuit was filed, and his widow, Donna, carried on the case, appealing the dismissal of the case to the U.S. Supreme Court.

The Supreme Court decided on Wednesday that makers of medical devices like implantable defibrillators or breast implants are immune from liability for personal injuries as long as the FDA approved the device before it was marketed and the device meets the FDA's specifications.
The case turned on what Congress had meant by a clause in the 1976 Medical Device Amendments statute that bars states from imposing different requirements from federal requirements. The justices apparently decided on the Congress' intent without asking either of two current congressmen who had key roles in moving the bill forward back in 1976. Both the Senate’s sole sponsor of that legislation – Sen. Teddy Kennedy – and Rep. Henry Waxman, a member of the House panel that approved the bill, were sharply critical of the decision.

Sen. Kennedy commented, "In enacting legislation on medical devices, Congress never intended that FDA approval would give blanket immunity to manufacturers from liability for injuries caused by faulty devices." Rep. Waxman said, "The Supreme Court's decision strips consumers of the rights they've had for decades. This isn't what Congress intended, and we'll fix this nonsensical situation."

Advice to people who may need surgery to implant a medical device: Do your homework carefully to understand the safety of various devices.

Browse for related stories in the index at the very bottom of this page, or read a medical device malfunction story.

Thanks to Linda Greenhouse for the source article in today's NY Times.

Wednesday, February 20, 2008

This sounds insane, and it is: Refusing payment for hospital drug errors

On Feb. 14, the Boston Globe described a study by my esteemed colleague Dr. David Bates that revealed that one in ten patients had serious preventable drug errors during their treatment at six selected community hospitals in Massachusetts.

Today the Globe published my letter in response, under the heading "Put hospitals on path to improvement:"

To the Editor:
The article is shocking. Adding insult to all these injuries is the fact that patients pay for these errors. Health insurers pay the hospitals as billed, and insurers build in all the costs when they set our insurance premiums.

The most powerful thing we can do as patients is to urge our insurers not to pay for hospital errors that we suffer. Insurers could withhold payment to the hospital, which would send the hospital the right message. Otherwise, given the reimbursement system, hospitals could benefit financially for additional days of hospital care that were incurred because of an error. (This sounds insane, and it is, as I know all too well from my work in patient safety.)

Consumers must demand safer hospital care. Strangely, this could be the best way to get it.

Browse for similar stories in our index at the very bottom of this page, or read a story on pending legislation to report and reduce hospital errors.

Sunday, February 17, 2008

She wanted the science as well as the magic: Susan Sontag's patient-doctor relationship

David Rieff's story:
When my mother [Susan Sontag] found out she had myelodysplastic syndrome, the terrible blood cancer that eventually took her life, she oscillated between numb despair and acute panic. When she was panicked, nothing those who loved her did or said could calm her down, let alone console her. And yet we soon learned that if we could reach Stephen Nimer, her principal physician at the Memorial Sloan-Kettering Cancer Center, by telephone, or if, better still, Dr. Nimer could make the time to see my mother, however briefly, her awful distress would abate – at least for a while.

Observing my mother's exchanges with Dr. Nimer, I could not help wondering why what he said consoled her. For he never played down the lethality of the disease, nor did he hold out false hope. Doubtless, Dr. Nimer's long experience with gravely ill people, the hard-won human skills he acquired over decades of practice, played a central role. The comfort my mother derived from speaking with him was also due to her own very traditional conception of their relationship. She had no time for alternative medicine, nor did she believe that her will would somehow be strong enough to counter the scientific realities.

But my mother's relationship with her principal doctors was only fully effective because in some ways it was shamanistic. Of course, she wanted the science as well as the magic….

Advice: Find a doctor who knows both medical science and the magic of consolation.

Browse for related stories in the index at the very bottom of this page, or read a compassionate care story.

Thanks to David Rieff for the source article in today's NY Times Magazine, drawn from his book, "Swimming in a Sea of Death: A Son's Memoir."

Saturday, February 16, 2008

The scar adds to my collection: medical malpractice in heart surgery

Blogger Espe’s story:

Dec. 7, 2007:
so, my heart surgery is just around the corner...damn...i've been waiting since june for my heart problem to have some closure and that day is almost here. i thought i'd be shitting it by now, but i'm not. i'm looking forward to the morphine and other prescription pain killers...and the scar....well, it adds to the collection. hopefully, i'll be out of the hospital before christmas. it would really suck having to spend the holiday in the hospital. i don't want to put my family through that again.

Feb. 16:
since today it has been two months since i've been in the hospital. i came in for a heart surgery that was supposed to last four hours, but i've been stuck here for a medical malpractice that occurred during the surgery. i basically ended up with my right leg cut on both sides by a vascular doctor by emergency during the surgery because my leg was swollen. the team who did my heart surgery did not notice my leg until the surgery was over. i've been through near amputations, various procedures including three leg debridements, and i've had to learn how to walk two times already using a walker (actually it's hopping on my left leg because i still can't use my right leg), but hopefully i will be having my skin grafts next week and if it all goes well i may be home two weeks from now.
there's a bunch of other stuff i want to get into about my stay here, but i'm way tired and it's hard to type. my ring and pinky finger have been numb since after my first surgery. i don’t know how long they will stay that way, but they make it a mission to type on the laptop.
i miss so many things, but i will hopefully get to do them all after i get out. i won't be the one driving, though, for God knows how long.

Advice: Have a patient advocate with you in the hospital.

Browse for related stories in the index at the very bottom of this page, or read another heart surgery story.

Thanks to espe for the source blog post.

Friday, February 15, 2008

Life rolls on: Living after a spinal injury

At 17, Jesse Billauer aspired to be a professional surfer. Then one day in 1996, while surfing off a Southern Californian beach, a wave knocked him into a sandbar and broke his neck, leaving him quadriplegic. Friends and neighbors raised money for Jesse's medical expenses. After a few years, when his medical bills were paid, he and his brother Josh decided to use the money to start an organization that would raise awareness about spinal cord injury as well as money for research.

"After my injury everyone kept saying, 'Well, life goes on,' and I thought, No, life rolls on," Jesse says.

So far, Life Rolls On has raised more than $1 million, says Josh, who serves as chairman of the board.

"When you've put all the effort in and see the smiling faces of people surfing who never thought they could even get into the ocean, you tend not to dwell on how much time and energy went into everything," Josh says.

Advice to people who have suffered great misfortune: Look for some way you can get your life to roll on through doing something you love.

Browse for similar stories in our index at the very bottom of this page, or read another story on a gritty athlete who became a fund-raiser.

Thanks to Stephanie Cajigal for the source story in the January/February issue of Neurology Now.

Thursday, February 14, 2008

The same genetic lightning bolt: Rare DNA defects among some autistic and developmentally delayed children

The girls had never met, but they looked like sisters. There was no missing the similarities: the flat bridge of their noses, the thin lips, the fold near the corner of their eyes. And to the families of 14-year-old Samantha Napier and 4-year-old Taygen Lane, there was something else, too. In the likeness was lurking an explanation for the learning difficulties, the digestion problems, the head-banging that had troubled each of them for so long.

Several of the adults wiped tears from their eyes. "It's like meeting family," said Samantha's older sister, who accompanied her and their mother to a Kentucky amusement park last July to meet Taygen.

But the two families are not related, and would never have met except for their unusual bond: a few months earlier, a newly available DNA test revealed that Samantha and Taygen share an identical nick in the short arm of their 16th chromosomes.

Doctors are now learning that the symptoms of many children who are diagnosed as "autistic”"or "developmentally delayed" can be traced to the deletion or duplication of particular parts of the children's DNA. Some mutations are so rare that they are known only by their chromosomal address. For example, Samantha and Taygen are two of only six children in the world who are known to have defects in the 16p11.2 section of their DNA. (The most common mutation, on the other hand, is Down syndrome, which occurs in people with an extra 21st chromosome in addition to the usual pair.)

The affected children are typically the only ones in their families to have the disorder. So, many parents are searching out strangers who've been struck by the same genetic lightning bolt. They want solace, advice and answers to what the future might bring. From other families of children with the same chromosomal anomaly, they are seeking insight into their own. Sometimes what they find is unsettling; more often, in the emerging communities of the genetically rare, what they find is sustaining.

The genetic counselor at the University of Louisville Hospital put the girls' mothers in touch. The first time the mothers spoke, they talked on the phone for hours. When they met face to face, the questions continued.

Was Samantha sensitive to small noises? Even a cough or a sneeze can make Taygen shudder.

Samantha makes her mother unplug the clock every night because she can't stand its ticking.

Taygen is often sweet and then nasty in bewildering succession.

Samantha slaps you and then hugs you. You never know what is coming next.

It got easier, Samantha's mother told Taygen's mother. She has fewer tantrums now, and has learned her letters.

Advice to parents of autistic and developmentally delayed children: Consider getting help from an organization in Britain called Unique. They seek to link families with rare chromosomal disorders.

Browse for related stories in the index at the very bottom of this page, or read another story on the misdiagnosis of a rare genetic condition.

Thanks to Amy Harmon for the source story in the December 28 issue of the NY Times.

Wednesday, February 13, 2008

He's suing the device maker: Prodisc artificial spinal disk lawsuits

Calvin Timberlake, a 50-year-old former forklift operator who lives in Texas, had a Prodisc implanted in his spine four months after the US Food and Drug Administration approved it. Prodisc is an artificial metal and plastic spinal disk that is meant to relieve lower back pain by replacing a damaged disk between vertebrae of the spine. Calvin's surgeon was not involved in the clinical trial, though he apparently had invested in Prodisc. The Prodisc soon came apart, requiring an emergency operation to remove it. Calvin remains in extreme pain, and has to take medication to control the pain.

Calvin is suing Synthes, the Prodisc's maker, but not his surgeon, whom he does not blame for the problems.

Many of the surgeons who co-authored articles in peer-reviewed medical journals had major investments in the Prodisc, and at least some of them did not disclose their investments to the journal editors when they submitted their manuscripts for publication. They stood to profit financially if the Prodisc succeeded in the market, according to confidential information from a patient's lawsuit that was settled last year.

Advice to people who may have surgery to implant a medical device: Ask your surgeon's office manager if the surgeon has a financial stake in the device.

Browse for related stories in the index at the very bottom of this page, or read another Texas spinal surgery lawsuit story.

Thanks to Reed Abelson for the source article in the Jan. 30 issue of the NY Times.

Monday, February 11, 2008

The hospital's lab had mixed up her test: An unnecessary mastectomy and death

Last spring, doctors at a Long Island hospital gave a patient the news she had feared: cancer had been detected in her left breast.

She was only in her 30s, but she decided to act swiftly because breast cancer ran in her family. On May 25, she had a double mastectomy. The next day, she died from complications in the surgery.

As it turned out, she did not have cancer. According to the state Department of Health, the pathology report from the woman's surgery had found no tumors in her breasts. The hospital's lab had mixed up her test with another woman's.

Since that time, the hospital has taken corrective action, which has been deemed proper by the Department of Health.

Advice to surgery patients: Read the test results yourself and ensure the test results show your name and date of birth.

Browse for similar stories in our index at the very bottom of this page, or read another cancer misdiagnosis story.

Thanks to Cara Buckley for the source story in today's New York Times.

Saturday, February 9, 2008

I'm being Medevac'ed out a second time: US Army's medical care

I am a regular army captain - a social worker - currently stationed in Baghdad, Iraq. I have been here almost 13 months and getting ready to go to Landstuhl for possible surgery - I'm writing this from the CSH in Baghdad Internet Cafe.

Well, the horror story was when I first signed up for the Army as a private in 1983 I went to basic training at Fort McClellan, Alabama. Around the 4th week we went on bivouac and I developed a fever and heavy bleeding. They sent me to sick call (even though we were told NOT to unless we were on our death beds) and they took some tests. The fever wouldn't go down so they admitted me. Well, I was watching CNN from my hospital bed and apparently the hospital I was in had an incident... someone switched Argon Gas tanks with Oxygen Tanks and killed people in the operating room. Well, the hospital completely shut down and they stated (in the records I still own) that they felt I needed more tests to determine the cause of these problems but due to circumstances beyond their control, they were discharging me to the Troop Outpatient Clinic. Then I went back out to the Field, and things got even worse, more bleeding and continued high fever. Under the fear of saying anything I just continued my training.

When we were returning, that night in the shower, I fell down delirious, and the ambulance was called. They did a camera probe of my cervix area and found infection that had burst. They then wheeled a telephone over to me and told me to make my final phone call as it was not expected for me to live through this surgery. I called my mother. Next thing I remember was waking up and them telling me I had a total and complete hysterectomy, to include my ovaries.

I then recuperated and went through basic training a full second time and have not left the service completely for 25 years. That was March 1983 and it's almost March 2008 now. So I was unable to have children at age 19 and have been on HRT for 25 years. I have a 20-year Reserve retirement since I spent all that time in the Reserves and National Guard but have a total of 10 years active duty service. I became a social worker, direct appointment into the medical service corps 04/06 and have three more years to go.

Well, 16 years ago my ex-husband and I decided I should get implants. I loved them and they have been great all these years. Well, last July a series of rockets came into our FOB Falcon and I ran with a large box in my arms to the bunker, but, tripped and fell... causing the box to smash my left breast. They sent me to Landstuhl to have an MRI and the physician/radiologist stated that it was ruptured. Then a few hours later another doctor said that it was not ruptured. They differed in opinion and I was sent back to FOB Falcon where I didn't notice anything but the usual stinging pain in my left breast they told me was just "nerve damage" from falling on it.

Then a few days ago I noticed actual jell like blob underneath my bra strap heading south to my stomach area. They sent me here to the CSH and the doctor blatantly stated, "Since these are such a problem for us we are going to recommend they be removed." She made it sound like I was causing problems with the army medical system so they will simply remove these things. What she didn't realize was that the Army misdiagnosed the rupture 6 months ago...and it was not my fault but theirs that I'm being Medevac'ed out a second time. It was like she was disgusted that I was causing such a "non-military, non-weapon caused injury" to take up her resources.

So... now I'm waiting to fly to Landstuhl today or tomorrow to have them crassly remove my implants and NOT replace them with new saline implants. What a nightmare. I am a social worker and I don't even know how to negotiate the Army medical system to advocate for my own medical care. It's like this giant, huge blob of permanently compartmentalized disinterested individuals... much worse than a HMO like Kaiser Permanente. I feel like a number and not a human being where my thoughts on my breasts make a difference.

I have had the breast implants for 16 years and they were fine until the friggin' rocket made me fall on them... Are they going to make a law about women having breast implants in the army? I don't think so...

Anyway, thanks for letting me vent about this... The other thing was they gave me a copy of this medical record from the ultrasound I had here at the CSH and there is incorrect information all the way through the record...dates, time frames, etc. Nothing I said was placed into the medical record. It makes me frustrated and scared to face what is next for me at Landstuhl. I feel they already once removed all my female parts and now they will take these breast implants...

-Diana M. Colon LCSW, PIP
CPT, MS
Licensed Clinical Social Worker
FOB Falcon, Iraq

Browse for related stories in the index at the very bottom of this page, or read another Iraq veteran's story.

Friday, February 8, 2008

Not until 2006: Lawsuit on interpretation of Paxil's suicide risk in drug trials

An inappropriate analysis of clinical trial data by researchers at GlaxoSmithKline obscured suicide risks associated with paroxetine, a profitable antidepressant, for 15 years, according to court documents released last month. Not until 2006 did GSK alert people to raised suicide risks associated with the drug, marketed as Paxil and Seroxat.

An analysis of internal GSK memos and reports, which were released to US lawyers seeking damages, suggests that the company had trial data demonstrating an eight-fold increase in suicide risk as early as 1989. Harvard University psychiatrist Joseph Glenmullen, who studied the papers for the lawyers, says it's "virtually impossible" that GSK simply misunderstood the data - a claim the company describes as "absolutely false."

Glenmullen's report rests on documents obtained by lawyers in Los Angeles, who are bringing around 30 cases against GSK linking suicides and suicide attempts to the use of Paxil. The report was under seal at a district court in Sacramento, California, until 18 January, when the judge agreed to make parts of it public.

The analysis focuses on the "washout" phase preceding a trial, when subjects stop taking most or all medications to avoid confusion with results from the trial itself. Because the washout occurs before patients randomly receive either the drug or the placebo control, adverse events during this time can't be attributable to the trial and so are seldom if ever included in final results.

However, GSK researchers submitting data on Paxil to the US Food and Drug Administration in the late 1980s and early 1990s included suicides and suicide attempts from the washout period in the results for the placebo arms of trials, but not from the Paxil arms. Glenmullen alleges that these extra "placebo" suicides negated suicides attributed to Paxil in the trials, making the drug appear safer than it really was. He says that if the washout results had been excluded, the data would have showed that Paxil increased eight-fold the risk of suicidal behaviour in adults.

GSK spokeswoman Mary Anne Rhyne says inclusion of the washout data "was intended to present the full picture of events that occurred in all phases of the clinical trials - starting from the time patients were enrolled, before they were randomised." She says that even without the washout data, Paxil still came out as safe as the placebo in this trial. She accused Glenmullen of incorrectly analysing the data to reach the opposite conclusion, but didn't respond to a request for numerical proof that Glenmullen's verdict was wrong.

Glenmullen suggests that the FDA would have acted differently had the use of the washout data been made more explicit. Rhyne says that material still under seal shows the FDA to be fully aware of how the washout data was being used. But Glenmullen quotes Martin Brecher, the FDA official who reviewed Paxil's safety, as agreeing during a pre-trial hearing that the use of the washout data was "scientifically illegitimate."

Independent researchers say it was wrong to use washout data as GSK did. "I can't imagine circumstances in which it would be appropriate," says Bruce Psaty of the University of Washington in Seattle.

Advice: Weigh the tradeoffs carefully in deciding whether to take antidepressants.

Browse for similar stories in our index at the very bottom of this page, or read an antidepressant adverse drug reaction story.

Thanks to Helen Haskell for sharing Jim Giles' source story in the Feb. 6 issue of the New Scientist.

Thursday, February 7, 2008

Even at low dosage: Fatal overdose of prescription drugs for Heath Ledger

The actor Heath Ledger died accidentally from "the abuse of prescription medications" – six kinds of painkillers, sleeping pills and anti-anxiety drugs – according to the New York City’s Medical Examiner's office. Heath, a star of "Brokeback Mountain," had been found dead in his SoHo apartment on Jan. 22.

The narcotics oxycodone (the main ingredient in OxyContin) and hydrocodone (the main ingredient in Vicodin), and the drugs diazepam (Valium), alprazolam (Xanax), temazepam (Restoril), and doxylamine (in certain sleeping pills and cold medicines) were found in his system.

"It's the combination of the drugs that caused the problem, not necessarily too much of any particular drug," said a spokeswoman for the Medical Examiner’s office.

Heath's father, Kim Ledger, said "we learned today the combination of doctor-prescribed drugs proved lethal for our boy. Heath's accidental death serves as a caution to the hidden dangers of combining prescription medication, even at low dosage."

Dr. Vatsal Thakkar, a psychiatrist at New York University Medical Center voiced a concern that some of the drugs Heath had taken could have built up in his body.

Advice to those taking several prescription drugs: Check here (for free) to ensure they do not have dangerous drug-drug interactions.

Browse for similar stories in our index at the very bottom of this page, or read a similar celebrity’s story.

Thanks to James Barron for the source story in today's NY Times.

Wednesday, February 6, 2008

An armed guard told him his kidney had been removed: Theft ring for kidney transplants

As the anesthetic wore off, 25-year-old Naseem Mohammed said, he felt an acute pain in the lower left side of his abdomen. Fighting drowsiness, Naseem, a day laborer, fumbled beneath the unfamiliar green medical gown and traced his fingers over a bandage attached with surgical tape. An armed guard by the door told him that his kidney had been removed.

He was the last of about 500 Indians whose kidneys were removed by a team of doctors running an illegal transplant operation, supplying kidneys to rich Indians and foreigners, police officials said. A few hours after his operation last Thursday, the police raided the clinic and moved him to a government hospital. He has been recuperating in a Gurgaon hospital.

He had had no idea that it was possible to sell a kidney. He had been picking up odd jobs in Delhi for the past two years and had been sending money to his family in Gujarat.

Two weeks ago, he was approached by a bearded man as he waited at the early-morning labor market by the train station. The man offered him a generous deal: six weeks of painting work, with free food and lodging. He was driven four or five hours, to a remote bungalow, where he was placed in a room with four other young men, under the watch of two armed guards.

"When I asked why I had been locked inside, the guards slapped me and said they would shot me if I asked any more questions," he said. The men were given food to cook and periodically nurses would take blood samples. One by one, they were taken away for operations.

"They told us not to speak to each other or we would pay with our lives," he said. "I was the last one to be taken."

Advice to people needing a kidney:
Explore kidney sharing, as described here recently.

Browse for related stories in the index at the very bottom of this page, or read a kidney swap story.

Thanks to Amelia Gentleman for the source article in the Jan. 30 issue of the New York Times.

Monday, February 4, 2008

Pimp C's death from an overdose of cough syrup

Influential Southern rapper Pimp C died of an accidental overdose of a combination of drugs he had named in his lyrics - codeine and promethazine, the county coroner's office ruled Monday.

The drugs are key ingredients in "syrup," a narcotic of choice in Southern rap circles that was most famously celebrated by Three 6 Mafia and Pimp C's group Underground Kingz in the 2000 single "Sippin' on some Syrup."

The coroner's office said Pimp C had sleep apnea, which causes people to stop breathing for up to 30 seconds at a time while sleeping. That illness combined with large amounts of prescription-strength cough syrup is what killed the rapper, the coroner's Capt. Ed Winter said.

DJ Screw, another influential figure in the Texas hip-hop scene, died of a heart attack in 2000 after a reported overdose of codeine-laced cough syrup.
Pimp C, born Chad Butler, was 33 when he was found in his bed Dec. 4 at the upscale Mondrian hotel in West Hollywood. The coroner's office said his body was decomposing when it was found.

With partner-in-rhyme Bun B, Pimp C was half of the pioneering Port Arthur, Texas-based rap duo UGK. The group's self-titled CD topped the Billboard charts last year. Pimp C had been working on a solo effort before he died.


Advice for those who need to use recreational drugs:
Use safe, legal ones in moderation.

Browse for related stories in the index at the very bottom of this page, or read a self-administered prescription drug overdose story.

Thanks to the Associated Press for the source story today.

Sunday, February 3, 2008

Fast cash: Adverse effects of drug trials on human guinea pigs

Journalist Carl Elliott interviewed several human guinea pigs for a story in the New Yorker. One Iraqi man, living in Canada, began doing trials when he emigrated to Canada. He was living in a hostel and needed money to buy a car. A friend told him, "This is fast cash." When he enrolled in an immuno-suppressant trial at a Montreal-based subsidiary of SFBC, he found himself in bed next to a subject who was coughing up blood. Despite his complaints, he was not moved to a different bed for nine days. He and eight other subjects later tested positive for tuberculosis.

A human guinea pig in another drug trial had an even grimmer outcome. Traci Johnson, a previously healthy 19-year old student, committed suicide in a safety study of Eli Lilly's antidepressant Cymbalta in January, 2004. (Lilly denies its product was to blame.)

Alan Milstein, a lawyer in Philadelphia who has represented several human subjects, says about human guinea pigging: "This is not something you or I do. This is something the poor do so that the rich can get better drugs."

Advice to human guinea pigs: Read the fine print carefully to learn your rights.


Browse for related stories in the index at the very bottom of this page, or read another human guinea pig story.

Thanks to Carl Elliott for the source story in the Jan. 7 issue of the New Yorker.

Saturday, February 2, 2008

If he'd give me a few good years, I'd work on hospital-acquired infections

Bill Percival of Greenville, South Carolina picked up five staph infections while in a hospital for cancer treatment. As he clung to life, he made himself a promise.

"I told my doctor that if he would give me a few good years, I'd spend them working on hospital-acquired infections," said the 64-year-old retiree.

He kept his word. Since his recovery, he has spent the past few months attending meetings of a group overseeing the reporting of such infections.

On Friday, the S.C. Department of Health and Environmental Control released its first report showing rates at hospitals around the state for two types of infections — those associated with the placing of a catheter deep into major blood vessels, and those associated with surgical sites. In this first report, the latter category includes only heart-bypass surgeries and hysterectomies.

DHEC will collect more data and will issue another report later this year. Other procedures will be added to the reports over time so the public can have an idea of how a hospital is doing overall.

"In the long run, we hope that we get the reports to the point that they are a useful guide to healthcare consumers so that you can look and see where you're more likely to be safe if you have to go in a hospital," said S.C. consumer advocate John Ruoff, who lobbied for the infection-reporting legislation.

"People need to be knowledgeable about this, and if these reports can increase public awareness of the danger of health care-associated infections, antibiotic-resistant infections in hospitals and in the community, that is a big help," said Helen Haskell, who helped form Mothers Against Medical Error after her son died in a hospital.

Sen. Ralph Anderson, D-Greenville, lead sponsor of the infection-reporting bill, said the requirement will get hospitals to work harder to lower infections.

Dr. Shawn Stinson, who is in charge of clinical quality and patient safety at Palmetto Health, said, "I have kids, and if they get sick and end up in somebody else's hospital, I want zero."

Advice: Join the efforts of citizens in many other states to file and pass state legislation to require the reporting of hospital-acquired infections.


Browse for related stories in the index at the very bottom of this page, or see a short video of one person’s hospital infection story.

Thanks to Czerne Reid for the source story in today's South Carolina state.com.

Friday, February 1, 2008

Two compatible pairs: Paired kidney exchange

Thanks to a new program, a Georgia man and a Bessemer, Alabama, woman who both expected to wait many years for kidney transplants received new organs. More than a year ago, they were the first patients to receive a paired kidney exchange that matches a patient who has a willing, healthy living donor — sister and fiancĂ©, respectively, in this case — with another donor and recipient, forming two compatible pairs.

The donors and recipients: Recipient James Thorn Jr., 38, of Bainbridge, Georgia, and his sister, Cynthia Rayburn, 42, of Jefferson County; and recipient Dwana Lewis, 29, and her fiancé, Alex Caldwell, 40, both of Bessemer. In the exchange, Cynthia donated to Dwana and Alex donated to James.

This was the first such procedure performed at the University of Alabama. All patients were recovering well and are listed in Good condition, transplant surgeon Alex Hawxby said. The recipient patients James and Dwana were to be discharged from the hospital within a few days while their immune-suppressing medications were being adjusted.

In such a procedure, both pairs of patients initially are kept anonymous from each other. When admitted to the hospital, they are assigned to different nursing units, go to different pre- and post-operative areas and return to separate nursing units afterwards. Their families wait in different areas, also.

To prevent any possibility that one of the donors might back out of the operation at the last moment, all the patients are simultaneously put under anesthesia.
Matching the appropriate incompatible pairs is a complex undertaking that requires additional staff and operating rooms, and a carefully choreographed operating room process, according to Dr. Eckhoff, who is director of the UAB Division of Transplantation. "The UAB Transplant Program has committed considerable resources for this program because of its great potential to provide relief to many of our patients," he said.

National Kidney Foundation President David G. Warnock, who is director of the UAB Division of Nephrology, noted: "This development marks an important milestone in the ongoing growth of the UAB transplant program. It will broaden the choices of patients with chronic kidney disease who are needing living donors for transplantation."
Nationally, the number of donated kidneys coming from living donors has increased dramatically in the last decade, as kidney-failure patients realize that the number donors available through organ banks is not rising by much. Family members and other loved ones may want to volunteer to donate one of their kidneys, but frequently are turned down for medical reasons. Others are told they cannot donate to their relative or friend because they have tissue characteristics that are incompatible or because the patient's blood contains proteins that would cause the kidney to be rejected.

UAB transplant doctors hope the Living Incompatible Kidney (LINK) transplant program will reduce long waiting times and help ease the organ shortage. Dr. Hawxby said, "As many as a third of patients are incompatible with their potential living donors. With the new paired kidney exchanges through LINK, a donor freely offers a kidney to a stranger in order to get their own loved one transplanted by another donor with a reciprocal situation. Many dialysis patients are on our transplant waiting list, which is why that list now numbers more than 2,400, with waiting times for transplants of typically four to five years and sometimes more."

Several more paired kidney exchanges are being evaluated.

Drs. Hawxby and Mark H. Deierhoi led James' operation, and Drs. Devin Eckhoff and Harry Sun led Dwana's surgery.

Advice to those needing a kidney: Look into innovative programs of kidney exchange like this one.

Browse for similar stories in our index at the very bottom of this page, or read a kidney transplant story.

Thanks to Hank Black of the University of Alabama for the source story.

Thursday, January 31, 2008

As if it never occurred: Pain medication errors affecting a nurse patient

Laura's Story
I herniated a disc in my back when I was very young and, although I was diligent with my physical therapy exercises and had tried many healing modalities, nothing helped my chronic and debilitating back pain. Still in my twenties, I was told to have breast reduction surgery to help my back. Although I didn't particularly care about the cosmetic effects, overall I was hopeful that the surgery would help and thus increase my enjoyment of my life. The health insurance I had at the time of the initial recommendation would not cover the surgery, but I was finally able to have it a few years later when I changed companies and the new one was willing to cover it.

Because of restrictions imposed by my health insurance, I was required to go to a hospital that, even then, I could not strongly recommend even though it is a major Boston teaching hospital (I worked in healthcare so have some knowledge). I did not have anyone to stay with me because my father had recently died, my mother was dying, and my friends were busy during the day with work or children. Still, I was reassured that I would be ok because I trusted and liked my surgeon, I would only be in the hospital one night, and my surgeon had come up with a strict pain management plan for after the surgery. I would have strong pain medication available to me every two hours, as well as Tylenol in case I needed it in between.

Unfortunately my trust was misplaced. Still sedated, disoriented, and numb immediately after four hours under general anesthesia, I was allowed by the orderlies and nurses to lift my entire body weight from the gurney to the hospital bed, despite orders that I not use my arms or lift heavy weights for a month. As a result, by the next morning, I was in agony. I had had my chest spliced open, very tender body parts were stitched back together. Yet my nurse refused me any pain medication at a time I should have been able to get it, and said I was not allowed Tylenol. She left and did not return, despite repeated calls from me, through the floor secretary, to her (which I overheard through the intercom). I was left crying, sweating from pain, my heart pounding, frightened. I felt trapped and vulnerable because I could not get out of the bed due to the pain. I was helpless.

At least two hours elapsed with me in this difficult state. Towards the end, growing desperate, I attempted to page my surgeon from my bedside phone but was told by the operator it was not allowed, and I should ask my nurse to page him (!). Later I called back and, explaining my plight to the operator, was connected with a helpful hospital employee who then reached various nursing supervisors, resulting in a parade of nurses of various levels coming to my bedside. My nurse told me she had not come because I wasn't due for my medication; I said she should have come to see me anyway, because I had a right to know why no one was responding to me. She and her supervisors seemed angry and hostile to varying degrees, which I found upsetting at that vulnerable time. No one took responsibility; in fact my nurse blamed the innocent secretary for not relaying my pleas for help. She did not tell the truth, which I found alarming in itself.

I was discharged home without my pain under control and thus suffered from severe side effects from taking the maximum dose of oral pain medication; I almost landed in the emergency room. I was in too much pain to change my bandages as required so I had to have a visiting nurse come to my home to help me, which I am told is very unusual after this procedure. A year later, I had to have my scars re-excised because they were so severe; my surgeon thought that could be due to having lifted myself after surgery. At that time, along with a kind outpatient surgical nurse, I reread the medical chart from that hospitalization. It was clear to that nurse that the medication orders in the chart, readily available to my nurse on the day after my first surgery called for strong pain medication every two hours if I needed it. The Tylenol order was also spelled out in black and white; all just as my surgeon had stated to me beforehand. My nurse the day of surgery seemingly had lied to protect herself and had not bothered to even re-check the orders as they were clear even to me. There was no notation at all in the medical record of me lifting myself or my multiple calls for help, or my severe pain that morning. It was as if it never occurred.

Worse than the physical scars are the emotional ones for me. Something happened in my soul when that nurse left me so vulnerable and helpless. To this day I have trouble with trusting healthcare providers and hospitals, which is unfortunate for me because I have some minor but chronic health problems that require regular visits to such places. Additionally, I used to work in healthcare and find that I am less interested in working in such settings due to the unpleasant feelings that come up. It is remarkable how one person's unprofessional behavior can impact your life when you are a patient and thus intrinsically more helpless, vulnerable, and reliant on others.

Advice: Even nurses need a patient advocate when they are hospital patients themselves.

Browse for similar stories in our index at the very bottom of this page, or read a pain management story.

Wednesday, January 30, 2008

A higher power: Pres. Bush and alcoholism

"Addiction is hard to overcome. I drank too much at one time in my life," said President Bush on Tuesday to an audience at the Jericho program of the Episcopal Community Services of Maryland. Pres. Bush gave up alcohol at age 40, nine years after a conviction for driving while intoxicated.

"I understand faith-based programs. Sometimes you can find the inspiration from a higher power to solve an addiction problem," Pres. Bush added.

In his State of the Union address on Monday, Pres. Bush had asked Congress to guarantee permanent financing for religion-based groups. In Maryland, he used his personal story to make the case.

Advice to people who drink a lot: Religious faith, and a counselor in your faith, can help you overcome problems.

Browse for related stories in the index at the very bottom of this page, or read a kick-butt chaplain’s faith-based recovery story.

Thanks to Reuters for the source story in today's New York Times.

Tuesday, January 29, 2008

Those patients are going to do much better: Cancer patient navigators

Grace Stachlinski said she was diagnosed with breast cancer in October. She had surgery and is currently having radiation treatments.

"She told me if there was ever anything I needed to let her know and she'd be on top of it," Grace said of her patient navigator, Stacey Huber, at Mercy Medical Center in Baltimore.


Huber said that patients don't know what their issues and needs are until they're faced with cancer.

"Transportation and financial support are two of our biggest concerns, but there are organizations out there who offer grants," Huber said.

Huber said she helps patients obtain and fill out the proper paperwork. Mercy radiologist Dr. Maria Jacobs said it can make a difference in a patient's outcome.

"Because that helps with compliance of daily treatments. Patients who get radiation daily five days a week for six weeks can complete their course of treatment. Those patients are going to do much better," Dr. Jacobs said.

Patients will have to qualify for those programs, but the patient navigator can help figure that out as well, Huber said.


Advice to cancer patients:
Get the help of a patient advocate or navigator.

Browse for similar stories in our index at the very bottom of this page, or read a cancer survivor story.

Thanks to WBAL-TV Baltimore for the source story.

Monday, January 28, 2008

I’ve never received a thank-you note: A lupus patient's advice

Christine Miserandino has learned a thing or two from her frequent doctor's appointments for lupus. She writes about her illness on her web site, and says that before each appointment, she fills out three index cards: one with any new problems she needs to tell her doctor about, one describing her current symptoms, and a third with specific questions for the doctor.

She says this gets her better care. "My doctor is busy, and I have to respect that he has 40 patients in one day," she says. "If I don't go in with all my questions written down, I'd be rambling all over the place."

Doctors often schedule appointments in 15-minute increments. Sometimes you'll need much more than that. Christine says she always warns the appointment secretary when she'll need extra time, and asks whether a certain time of day (such as the last appointment) would be better.

Christine says she doesn't shy away from asking tough questions -- on the contrary, she asks lots of them and sometimes questions her doctor's recommendations -- but she always does it politely. Plus, she fosters a relationship with her doctor because she knows that to a great extent, her health depends on him.

"I do care, because I want him to care about me. I do bring cookies at Christmastime. It's a relationship you have to foster like any other."

Once, when her doctor went above and beyond what he had to do by visiting her in the hospital twice in one day, she wrote him a thank-you note. "He said to me, 'In the 20-odd years I've been doing this, I've never received a thank-you note. I always hear the negative, never the positive.'"

Browse for similar stories in our index at the very bottom of this page, or read a patient-physician miscommunication story.

Thanks to Elizabeth Cohen and Jennifer Pifer for the source story via CNN.

Saturday, January 26, 2008

The team doctor cleared him to play: Laveranues Coles' concussion treatment

New York Jets football player Laveranues Coles had sustained a concussion on Oct. 28 in a loss to the Buffalo Bills. The Jets coaches held him out for one game, and he presumably passed the neuropsychological tests that the league made mandatory this year. Apparently the team doctors cleared him to play, and he returned to the football field for several games.

While discussing his reputation for playing hurt, he said, "Sometimes I may need somebody to step in there at certain times and say, 'Laveranues, I think you need to do what's best for you.' But it is what it is."

Pete Kendall, a former Jets lineman now with the Washington Redskins, said he was "concerned for Laveranues. He seemed more subdued [when playing later that season] than normal." Lethargy is a common sign of an unhealed concussion.

Pete questioned whether critical decisions should be made by team-employed doctors, saying "I see guys playing in games that I don't think a personal advocate would allow them to do. The doctor who is supposed to be looking out for you is also the same guy who may put you into a game that the team has to win. You're mixing business with medicine."

Advice to the parents of injured athletes: Get a second opinion to verify the team doctor's opinion of your athlete's readiness to play.

Browse for similar stories in our index at the very bottom of this page, or read a athlete’s story.

Thanks to Alan Schwarz for the source story in the Dec. 22 issue of the New York Times.

Thursday, January 24, 2008

I was supposed to live, at best, 3 years: a myeloma foundation

She had graduated from Harvard Business School, and was on the fast track for a leadership position at Searle, the pharmaceutical giant. For four years, Kathy Giusti oversaw the marketing of Searle’s arthritis drugs. In 1995, at age 37, she was married, and had an 18-month old baby girl. In December that year, seeing her doctor for help in getting pregnant again, she learned she had myeloma, a cancer of plasma cells found in bone marrow.

She met with seven myeloma specialists and received contradictory advice. She ultimately chose the most conservative approach, partly because she greatly wanted another baby, and didn't want toxic drugs to interfere with her conception and pregnancy. "I put a plan together, and I went through the whole I.V.F. program to get pregnant."

By 1997, she had quit her job at Searle, and had given birth to a healthy boy.

The previous summer, she had attended a patient seminar sponsored by the International Myeloma Foundation. The foundation's directors asked her to be on their board. She agreed, and wrote a business plan for them. "But I was challenging them about where they were heading and what they are doing with research and funding research. [They were] getting annoyed with me. So they booted me off the board."

In October 1997, she and her sister held a dinner for wealthy friends near her new home in Connecticut, to raise money for myeloma research. It must have been quite delicious; they raised $450,000. She distributed most of it to research, and used the rest to set up the Multiple Myeloma Research Foundation.

She realized that in order to accelerate the development of new myeloma drugs, she needed to foster greater collaboration between researchers and different academic institutions. In 2002, she decided to assemble a consortium of scientists who would be required to submit their research proposals to a steering committee for approval, and to publish their results jointly. In exchange, the scientists would receive access to a tissue bank of myeloma blood cells and bone marrow, as well as administrative and organizational support for lab tests and clinical trials.

Since 1998, the foundation has raised $92 million. Since 2001, 21 drugs derived in part from research funded by the foundation have entered clinical trials, and eight are now in Phase 2 – a track record that pharmaceutical companies would envy.

Dr. Ken Anderson, Kathy's doctor, says, "Myeloma is now a paradigm for new drug development, because of partnerships that occur between academics, large pharmaceutical companies, small biotech, the FDA, the National Cancer Institute, and foundations. And, frankly, Giusti's foundation has been a catalyst that created the urgency and awareness to make this progress possible."

Kathy had a bone marrow transplant in 2006, and her cancer is in remission.

Advice to people struggling with grave diseases: Take heart from Kathy's example, and help as much as you can.

Browse for related stories in the index at the very bottom of this page, or read a story about a similar visionary nonprofit health entrepreneur hero.

Thanks to Dr. Jerome Groopman for the source article in the Jan. 28 issue of the New Yorker.

Wednesday, January 23, 2008

I was pushed aside: Waiting in the Emergency Department

Dear Mr. Porter:

This letter is to make you aware about my experience at your Emergency Department on March 13.

I am a college-educated, married, mother of two, and have been suffering from post-partum depression since the birth of my second daughter five months ago. On the evening of March 13, I became extremely overwhelmed with anxiety and stress and voluntarily called 911 to be taken to your Emergency Department. Had I even been able to imagine the experience I would have in the next 24 hours, I would have literally been more afraid to go to your E.D. than I would be had I stayed at home and "waited it out."

On the morning of March 14, I met with a member of the crisis team, who informed me that I would need to be hospitalized on an inpatient basis so that I could be evaluated. That being said, one can imagine that my emotional state was not so great. At 9 am, I was moved to the "family room" of the E.D. because of a lack of beds, which is understandable. I was shaking and crying, and dressed in only a "johnny." I was put in a room with a Certified Nursing Assistant (CNA) and a woman who was delusional, psychotic and combative. She was urine soaked and spitting and coughing uncontrollably. The CNA was pushy, miserable, and cold. I felt so unsafe being in the same room as that patient that I sat out in the hallway.

After about an hour of sitting in the hallway, I asked the charge nurse if there was somewhere I could sit that was a little more private (not to mention safer) than the hallway. The charge nurse said she would "find me a home," but never came back to even let me know that she couldn't accommodate me. What is worse, four hours went by and no one let me know what was going on. What could be worse than being alone without your family, with no one around in the most horrible time in your life, and then having no idea what's going to happen next?

Your nurses were all abrasive, and apathetic. I felt as though I was pushed aside, and then my problems didn't count. I felt like I was being treated like a criminal basically.

If your hospital and staff do not have the capacity, much less the compassion, to look at psychiatric illness the same as a medical illness, then I suggest you divert your "Section 12's”"and mentally ill to another hospital that can treat them with respect and compassion.

My experience in your E.D. was nightmarish. There is no other word to describe it.

Thank you for your time.

Sincerely,

Mrs. Elizabeth DeCoste


Advice: If care in the hospital is disrespectful, and you get no response from the nurse or charge nurse, contact the hospital's patient advocate, ombudsman, or president.

Browse for related stories in the index at the very bottom of this page, or read a waiting time story.

Tuesday, January 22, 2008

Now it’s up to us to use the information: Hospital quality ratings on bedsores et al

Naomi Press' family said her life dramatically changed after she entered the hospital on her 85th birthday for a partial hip replacement. Naomi ended up dying 11 days after her release from the hospital.

Her death certificate blames a hospital-acquired bedsore, malnutrition and sepsis, which is an infection that can cause organ failure. Documents obtained from the Department of Public Health state the timeline. The hip surgery was on Jan. 10, 2006 and two days later doctors discovered she had a stroke. Then on Feb. 3, after several weeks in the hospital, nurses documented a stage three bedsore.

Under state law, it should have been reported to the Department of Public Health, but was not.

Hospitals in Massachusetts now report their rates of bedsores in a publicly available database organized by the Massachusetts Hospital Association. Now it's up to us to start using the information to get our family members into the safest hospitals when they need it. If Naomi's family could have used such a database, they might have gotten her into a safer hospital.

Of course, the decision of where to admit our family member is usually largely the doctor's decision.

Advice for Massachusetts residents: Email your doctor with this story, and suggest your doctor look up the quality ratings of the hospitals he or she admits patients to.

Browse for similar stories in our index at the very bottom of this page, or see the video.

Thanks to NBC30.com for the source story.

Monday, January 21, 2008

Wrong drug, wrong patient, or just wrong?: Roger Clemens' claims of Vitamin B12 and Lidocaine use

The only people who legitimately might need vitamin B12 injections would be those with diagnoses of pernicious anemia, according to Dr. George Blackburn, Director of the Center for the Study of Nutrition Medicine at Beth Israel Deaconess Medical Center in Boston. It’s "virtually impossible" to get pernicious anemia in America nowadays, because of our ready access to fish, eggs, and dairy products

The New York Yankees baseball pitcher Roger Clemens has claimed that the injections that he received in his buttocks contained B12, and Lidocaine. "I don't why you would inject Lidocaine deep into this muscle," said Dr. Gary Wadler, a spokesman for the American College of Sports Medicine and a member of the World Anti-Doping Agency. In general, pain-killers like Lidocaine are used specifically to block nerves, and therefore pain, in a specific part of the body, such as teeth during dental procedures, or around aching joints, and are not properly used as Clemens claims.

It's more likely that Clemens is using these claims as a sneaky way of masking his illicit steroid use. If he used B12 and Lidocaine in these ways, they were the wrong drugs, for the wrong patient.

Advice: Think of yourself as a role model when you choose drugs.


Browse for related stories in the index at the very bottom of this page, or read a story about a former Yankees pitcher.

Thanks to Judy Foreman for the source article in today's Boston Globe.

Saturday, January 19, 2008

They're printing money: HIFU prostate cancer care

Some weekends, more than a dozen American men wait at beachfront hotels, anxious for their turns in the treatment room at a small private hospital in Puerto Vallarta, Mexico. They are medical tourists with prostate cancer, waiting for the latest therapy, high-intensity focused ultrasound (HIFU). It attacks the cancerous tissue by heating the prostate to temperatures near boiling, rather than using surgery or radiation.

But its long-term effects, and effectiveness, are unknown. And US HIFU, the company that promotes it, is attracting attention for its aggressive recruiting of doctors. "The people doing the treatments, they're just printing money," says Dr. Thomas Gardner. Though the urologist at Indiana University School of Medicine is enthusiastic about its potential, he adds, "Anytime anyone's printing money, doing what's right for the patient gets a little blurry."

"The US HIFU web site makes it all sound rosy; they give you none of the side effects and none of the bad results," said Fred Gillick, a Park Ridge, Illinois real estate executive who received the treatment in April 2006.

He says the procedure left him impotent and in need of a catheter at all times. Worse yet, the treatment did not eliminate his cancer. "Guys, there's a reason HIFU isn't approved here [in the U.S.]," he wrote.

Advice to men looking into prostate cancer treatment: Research all your options aggressively.

Browse for similar stories in our index at the very bottom of this page, or read a prostate cancer screening story.

Thanks to Stephanie Saul for the source story in the Jan. 18 issue of the NY Times.

Friday, January 18, 2008

The Animal House of drug research units: Human subjects – guinea pigs

On Sept. 11, 2001, James Rockwell was camped out in a clinical-research unit on the 11th floor of a Philadelphia hospital, where he had enrolled as a subject in a high-paying drug study. As a rule, studies that involved invasive medical procedures are more lucrative – the more uncomfortable, the better the pay – and in this study, subjects had a fiber-optic tube inserted in their mouths and down their esophaguses so that researchers cold examine their gastrointestinal tracts.

James had enrolled in many previous studies at corporate sites at places like Wyeth and GlaxoSmithKline. But the atmosphere there felt professional, bureaucratic, and cold. This unit was in a university hospital, not a corporate lab, and the staff had a casual attitude toward regulations and procedures. "The Animal House of research units" is what James calls it. "I'm standing in the hallway juggling," he says. "I'm up at 5:00 in the morning watching movies." Although study guidelines called for stringent dietary restrictions, the subjects got so hungry that one of them picked the lock on the food closet. "We got giant boxes of cookies and ran into the lounge and put them in the couch," James says. "This one guy was putting them in the ceiling tiles." James has little confidence in the data that the study produced. "The most integral part of the study was the diet restriction," he says, "and we were just gorging ourselves at 2 am on Cheez Doodles."

On the morning of Sept. 11, nearly a month into the five-week study, the subjects gathered around a TV and watched the news of the terrorist attack through a drug-induced haze. "We were all high on Versed after getting endoscopies," James says. He and the other subjects began to wonder if they should go home. But a mass departure would have ruined the study. "The doctors were, like, 'No, no!'" James recalls. "No one's going home, everything’s fine!" James stayed until the end of the study and was paid $7,500. He used the money to make a down payment on a house.

Over the years, James has enrolled in more than 20 studies for money. Today, fees as high as he received aren't unusual. Some people enroll in one drug study after another. For them, "guinea pigging" has become a job.

Browse for similar stories in our index at the very bottom of this page, or read another human guinea pig story.

Thanks to Carl Elliott for the source story In the Jan. 7 issue of the New Yorker.

Thursday, January 17, 2008

Do my breast implants have a warranty?

"My plastic surgeon told me that my saline implants should last forever," said Krista Schell.

Krista, age 29, lives in Thornton, Colorado, and works for the state. She had breast enhancement surgery in 2003 by a California doctor. The same doctor performed a second operation in April to replace a deflated saline implant that had collapsed and made her left breast look "hollow." Her implants were still under warranty. In November, she had a third operation, by a Denver surgeon, who removed both implants and extensive scar tissue. The implants had also caused rippling, a lump around one nipple, and pain. "If you look at the negatives, you would talk yourself out of getting implants," she said.

About a third of patients had a second operation within four years of their initial surgery, according to a study by Allergan, a maker of breast implants.

"With breast implants, informed consent is much more fuzzy because each doctor has his own perspective on how long they last, making it difficult for patients to realistically calculate the risks and benefits," said Dr. Eugene Goldberg, a biomaterials professor at the University of Florida, Gainesville. He teaches a class in which he uses breast implants as a case study of a badly engineered medical device.

Dr. Linda Huang, a plastic surgeon in Denver, tells patients their implants should be removed after ten to 15 years. She has removed implants from more than 1,000 patients.

Advice to women considering breast implants: Consider that you may well need more operations than the initial implant surgery itself.

Browse for related stories in the index at the very bottom of this page.

Thanks to Natasha Singer for the source article in today's New York Times.

Wednesday, January 16, 2008

We gave our own orders: Dignity in the hospital

Kathleen Kalt's story:

Patients have no obligation to the "health-care community." In fact, more patients need to know that they do not have to comply with every doctor’s request.

My daughter had leukemia at age 10 and clear-cell sarcoma at 17. She was treated by outstanding doctors, but we all knew she would not survive the second cancer. When she had to be admitted to a major teaching hospital for surgery, it seemed she was on all the grand rounds; everyone wanted to see this rare case and hear her medical history. We didn't think she needed to relive constantly the worst moments of her life. She needed dignity and control. We gave our own orders: "No one will touch her except her primary doctors. She won't answer any more questions. Read her chart for yourself." After seven years dealing with the medical establishment, we knew that the best patients were their own advocates.

Advice to parents:
To preserve your child's dignity, you can give your own orders to guide the learning of interns and residents in the teaching hospital.

Read another of our stories about a death with dignity.

Tuesday, January 15, 2008

Managers threatened to have them deported: Human guinea pigs

The most notorious recent disaster affecting healthy human "guinea pigs" took place in March 2006, at a testing site run by Parexel at Northwick Park Hospital, outside London. Parexel offered human subjects 2,000 British pounds to enroll in a Phase I trial of a monoclonal antibody, a possible treatment for rheumatoid arthritis and multiple sclerosis. Six human subjects required care in the Intensive Care Unit (ICU) after suffering life-threatening reactions, e.g., severe inflammation and organ failure. They were hospitalized for weeks. One subject's fingers and toes had to be amputated. All of them have long-term disabilities.

It's not clear whether Parexel is paying for the required health care for the injured human subjects. At least some contract research organizations do not do so.

SFBC International offers one such example. It conducted a two-month study of the pain medicine Palladone, offering subjects $2,400. SFBC reserved the right to penalize subjects whom it dropped from the study because of the drug's side effects. SFBC (now known as PharmaNet Development Group) paid their human subjects most of their compensation only after they completed all four of the study's confinement periods. When its undocumented immigrant guinea pigs talked to the press, managers threatened to have them deported, according to Bloomberg Markets. PharmaNet settled a lawsuit for $29 million in August.

Advice to those considering whether to be human subjects in clinical drug trials: Read other guinea pigs' stories first.

Browse for related stories in the index at the very bottom of this page, or read a shocking story about a human guinea pig.

Thanks to Carl Elliott for the source article in the Jan. 7 issue of the New Yorker.

Monday, January 14, 2008

Lisa's Story: A video on Reflex Sympathetic Dystrophy misdiagnosis

This short video was prepared for Health Care for All:



Advice:
For a questionable diagnosis, ensure that the second opinion you get is truly independent of the first doctor's opinion.

Please share this video with your friends.

Sunday, January 13, 2008

Ginny's Video: Staph infection from a broken ankle

She's walking again, 28 surgeries later. See Ginny's short video.



Ginny is a member of the Consumer Health Quality Council of Health Care for All. She told her story of a broken ankle, the staph infection, leg amputation, brain aneurysm and her recovery to the filmmakers Madhavi Bezwada, Meredith Mueller, and Hsiang-Yin Yeh of the Boston University of Public Health.

Advice: Please share her story widely.

Thursday, January 10, 2008

Linda's Mother: A video on fatal medical errors

Three graduate students at Boston University School of Public Health made this short video as part of the Storybank Project of the Consumer Health Quality Council of Health Care for All:

Health Care for All organized a program at the Massachusetts Statehouse today, which publicly aired this video and two others for the first time. Legislation that is now pending in the Massachusetts Legislature would reduce medical errors by requiring hospitals to report certain infection rates, involve patients more formally in hospital councils, encourage doctors and nurses to apologize for errors, and make a number of other positive changes.

Advice:
Share this with your friends and legislators.

Wednesday, January 9, 2008

As if they were old friends: Compassionate physicians' cancer care

Four years ago, my sister found out she had two types of cancer at the same time. It was like being hit by lightning twice.

She needed chemotherapy and radiation, a huge operation, more chemotherapy and then a smaller operation. All on all, the treatment took about a year. Thin to begin with, she lost 30 pounds. The chemo caused cracks in her fingers, dry eyes, anemia and mouth sores so painful they kept her awake at night. A lot of her hair fell out. The radiation burned her skin. Bony, red-eyed, weak and frightfully pale, she tied scarves on her head, plastered her fingers with Band-Aids and somehow toughed it out.

She saw two doctors quite often. The radiation oncologist would sling her arm around my sister's frail shoulders and walk her down the corridor as if they were old friends. The medical oncologist kept a close watch on the side effects, suggested remedies, reminded my sister she had good odds of beating the cancer and reassured her that the hair would grow back. (It did.)

People in my family aren’t huggy-kissy types, but my sister greatly appreciated the warmth and concern of those two women. She trusted them completely, and their advice. Now healthy, she says their compassion played a big part in helping her get through a difficult and frightening time.

Bedside manner can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.

Advice: Find a doctor whose skill set includes compassion.

Browse for related stories in the index at the very bottom of this page, or read a story on the role of compassion in healing.

Thanks to Denise Grady for the source story in the NY Times of Jan. 8.

Tuesday, January 8, 2008

I had failed my first test of leadership: Tracheotomy error

Dr. Gerald Healy's story
When I was a young surgeon, one of my patients nearly died and I was responsible. The incident had nothing to do with my surgical skills and everything to do with my lack of leadership.

The patient's airway was obstructed by a massive tumor and he needed an emergency tracheotomy. Flush with confidence from five years of surgical training and two years in the military, I could foresee no problems that I couldn't handle. Why bother going over my plan of care with the nurses or the anesthesiologist?

Just as the patient was being prepped for surgery, he went into cardiac arrest. The anesthesiologist, inexperienced in the procedure, was helpless to reestablish an airway. The regular nurses were unavailable, and their hastily selected replacements had never worked together in the operation suite on this procedure. I found myself marooned, shouting a flurry of commands at a team too paralyzed to act.

In the end, I was able to open an airway by performing a tricky and dangerous throat operation, and then restore our patient’s heart function. I helped save him but I was no "hero." The untenable situation I had faced was largely of my own making. I had neglected to evaluate the skills of my team, prepare the team members, and plan for contingencies. I had failed my first test of leadership.

Medical errors are often caused by a lack of communication, inattention to details, poorly coordinated resources, and inadequate planning. While we surgeons are trained to be outstanding technicians, little has been done to teach us effective leadership and communication skills.

Commercial airlines excel in safety. Flight crews have learned to make fewer errors, due to a leadership and team training approach called "crew resource management."

Dr. Healy is otolaryngologist in chief at Children's Hospital in Boston, professor of otology and laryngology at Harvard Medical School, and President of the American College of Surgeons.

Browse for related stories in the index at the very bottom of this page, or read a sadder story by a crew resource management expert.

Thanks to Dr. Healy for the source article in today's Boston Globe.

Monday, January 7, 2008

I am even going to be drinking decaf: Om Malik's heart attack

Om Malik, 41, suffered a heart attack on Dec. 28. He's now recovering, and says that he will be OK.

Om, a blogger who writes GigaOm about the technology industry, blamed a variety of vices. Om says, "Friends and family have purged my apartment of smokes, Scotch and all my favorite fatty foods – I am even going to be drinking decaf."

Om's incessant smoking of cigars and cigarettes likely led to the heart attack, according to Giga Omni Media's Chief Operating Officer, Paul Walborsky.

Other friends and colleagues cited the daily stress of blogging as a likely contributor to his heart attack. "If you come back to blogging before I give you permission, I'll be at your door to take away your MacBook," said his friend Paul Kedrosky.

Advice: Get your network of friends to help you take your New Year's Resolutions seriously.

Browse for similar stories in our index at the very bottom of this page, or read a story of a friend's help.

Thanks to Dan Fost for the source story in today's New York Times.

Sunday, January 6, 2008

The blunderer must bear the cost: A drug error

Question:
When my husband developed a leg infection, his physician prescribed the wrong antibiotic. The insurance company, recognizing the mistake, refused to cover the prescription's $573 cost. But I had already filled it, and my husband had taken a dose. I think our doctor should reimburse us. (The correct treatment for this common infection was immediately prescribed by two other doctors.) My husband demurs. You?
-Name withheld, Los Angeles.

Answer by Randy Cohen, the NY Times Magazine Ethicist:

The doctor should take responsibility, including financial responsibility, for his error. This is not to demand omniscient physicians or mistake-proof medicine. Everyone is fallible on the job. But acknowledging human fallibility does not mean abandoning all professional standards. It this was, as it seems, a genuine blunder, then it is the blunderer who must bear its cost.

Update: Acknowledging his error, the doctor agreed to waive all future fees up to the amount of the erroneous prescription.

Advice to victims of a medical error: Insist that the doctor bear the cost of the error.

Browse for related stories in the index at the very bottom of this page, or read an insurance company denial story.

Thanks to Randy Cohen for the source article in today's New York Times Magazine.

Saturday, January 5, 2008

39 times an hour: Late diagnosis of sleep apnea

Eric Diehl got tired of waking up weary and napping at midday, but he never dreamt he had a life-threatening condition.

"I'm a retired judge from the provincial court and I found that I was having to rest a lot between noon and the reconvening of court at 2 o'clock," he said. "My wife was also telling me that I was a very, very heavy snorer, but I didn't take it seriously and let appointments drift by when I shouldn't have."

When he was finally diagnosed with sleep apnea, tests showed Diehl was waking up 39 times an hour overnight.

"I wasn't conscious of that but obviously when you're waking up like this you're suffering all of the impacts of lack of sleep," he said. "Your powers of concentration go down, your ability to read well just drops."

Sleep apnea is a condition where the airway collapses during sleep. Loud snoring can mark the condition followed by lapses, where there's no sound and then a great gasp as breathing resumes.

After he was diagnosed, Diehl was fitted with continuous airway pressure equipment (CPAC) in 2004.

"Once I was put on this equipment, I was able to put in a regular night's sleep without any trouble at all," said Eric, who serves on the board of the Lung Association of Saskatchewan.

During the day, his endurance and energy has improved "beyond all expectation," he's more relaxed, his risk of heart attack and stroke is reduced and his driving habits and memory have improved.

The untreated condition can lead to many problems.

"During the time that breathing isn't occurring, the body gets very excited, the heart tries to beat faster and it leads to things like high blood pressure, heart attacks and stroke," Dr. Brian Graham, the President of the Lung Association of Saskatchewan, said.

Falling asleep behind the wheel is another deadly consequence.

"There's a huge increase in traffic collisions for people with sleep apnea," he said. "In various studies, it's anywhere from three to seven times as high."

That's important because sleep apnea is more common than you might think: obstructive sleep apnea (OSA) is the most common category of sleep-disordered breathing. The prevalence of OSA among the adult population in western Europe and North America is estimated to be 3-4% of women and 6-7% of men, according to Wikipedia.

Advice to partners of snorers:
Show them this.

Browse for related stories in the index at the very bottom of this page, or read a late diagnosis story.

Thanks to the Saskatoon Star-Phoenix of Jan. 2 for the source story.

Friday, January 4, 2008

I was obviously wrong: A misdiagnosed heart attack

Dr. Sandeep Jauhar's story:
I got a call from the E.R. at my hospital. A young intern who had been on rounds that morning had been admitted with chest pains. He was 30, a Pakistani man with a long face and a disconnected look, which I attributed to anxiety. I asked him about the pain. It had started after dinner the night before, lasting about 10 minutes. The pain had recurred the next morning for almost an hour. It was a dense pressure in the center of his chest, so he had come to the E.R.

His blood tests were normal, as was his first electrocardiogram (EKG). I suspected he was suffering from acute pericarditis, a usually benjgn inflammation of the membrane around the heart, treated with over the counter drugs.

Before I left the hospital that evening, a physician's assistant asked me whether the intern should get an angiogram to rule out artery blockage. I told him any work-up could wait until morning, and assured him that a 30-year-old with no risk factors did not have coronary artery disease.

My patient had chest pains throughout the night. Further blood tests then showed evidence of continuing heart muscle injury. An EKG the following morning showed signs consistent with a heart attack. Though I still doubted that he had coronary disease, I reluctantly sent him to the cardiac catheterization lab for an angiogram.

The angiogram showed a comlete blockage of the left anterior descending artery, the "widow-maker" lesion. Within minutes, a balloon and stent opened the blockage.

I knew I had to explain myself, but how much should I say? Like all doctors, I had made errors before, but never one this big – and in my own specialty.

I couldn't bring myself to talk to my patient in the cath lab, while everyone was watching, so I decided to wait until he got to the recovery room, where it was more private.

I found him there lying on a stretcher. The pain in his chest was gone, he happily informed me. "I thought you had pericarditis," I said carefully. "I was obviously wrong. I’m sorry."

He seemed embarrassed. "No, no please, the past is finished," he said. "I am more interested in the future."

He asked about his prognosis. I told him that I thought it was good, though he would have to be on medications for the rest of his life. He nodded, looking disappointed.

A few days later, before he was discharged, I stopped by his room. I asked him with whom he was going to follow up He told me that he had been given the name of another cardiologist but that he had decided to go with me. "You have been terrific," he said. "Thank you."

Browse for related stories in the index at the very bottom of this page, or read an apology story.

Thanks to Dr. Sandeep Jauhar for the source story in the NY Times of Jan. 1.

Thursday, January 3, 2008

With great enthusiasm and conviction: The placebo effect

His late mother-in-law, Sarah, had been a concert pianist who developed painful arthritis in her old age and found her doctors to be generally useless when it came to satisfactory pain control. "So, being an independent, take-charge individual, she subscribed to Prevention magazine, in order to learn more about the multiple remedies suggested in each month's issue" for symptoms like hers.

Predictably, every couple of months Sarah would make a triumphant phone call and announce with "great enthusiasm and conviction" that a new food or supplement or capsule had practically cured her arthritis. Unfortunately, each miracle cure was regularly replaced by a different one, in a cycle her son-in-law ruefully breaks down for detailed analysis in his book, Snake Oil Science.

He makes it clear exactly how the natural history of most painful conditions conspires with the placebo effect to make almost any treatment appear to work, so long as the recipient hopes and believes it will.

Placebos sometimes work. Their effects are characteristically mild and temporary. They are more or less indistinguishable from the effects of most alternative treatments, as Dr. Bausell describes.

R. Barker Bausell's advice: If you're bent on trying alternative medicine, find an appealing therapy and an enthusiastic practitioner, then plunge in wholeheartedly to maximize the placebo effect and prolong its duration.

Browse for related stories in the index at the very bottom of this page, or read a contrary story about the value of traditional non-scientific methods.

Thanks to Dr. Abigail Zuger for the source story in the Dec. 25 issue of the New York Times.

Wednesday, January 2, 2008

He was found dead at his computer: A Fentanyl overdose

Adam Hendelson had been in a car accident as a teenager. For years, on his right arm he had worn a Duragesic patch, containing Fentanyl gel, to manage his chronic hip pain. In December 2003, at age 28, he was found dead at his computer. The cause was traced to a leak in the patch that had given him a fatal overdose. In June 2007, a Florida jury awarded his family $5.5 million.

Last week, noticing that hundreds of people had died from similar accidents, the Food and Drug Administration issued a warning about the use of Fentanyl. The FDA warned doctors against prescribing Fentanyl patches to anyone new to opioids, the family of painkillers that includes morphine. The drug is only to be used for chronic pain in people who are used to using narcotics, such as cancer patients. Fentanyl can cause other people to have trouble breathing.

Advice to those with family members using Fentanyl patches: Read the FDA warning.

Browse for related stories in the index at the very bottom of this page, or read a less harmful story about conscious sedation.

Thanks to Lauran Neergaard of the Associated Press and Kenneth Reid for the source stories in the Dec. 22 issue of the Boston Globe and the June 18 issue of Adverse Event Reporting News, respectively.

Tuesday, January 1, 2008

Ripple effects as far as Portugal: An organ donor

Christopher Field was a history buff and a Godzilla fan. The 16-year-old youth suffered since birth from scoliosis and an unidentified condition that left his muscles weak. But he led a largely unimpaired life, using a wheelchair only for long walks.

At an appointment in the summer of 2005, doctors noted that his spinal scoliosis had worsened, and suggested immediate surgery to save his internal organs. Nine days after the 14-hour surgery, Christopher developed pneumonia, and his breathing grew labored. He was brought to the Intensive Care Unit (ICU). He suffered a fatal blood clot in his lungs (a "pulmonary embolism").

His mother decided to donate his organs to needy patients, setting in motion a ripple effect of tissue donations that have reached as far as Portugal. Two people now can see, with his corneas. His bones have been used to prepare 39 bone grafts, with two transplanted already. Doctors have used his heart tissue to repair a defect in a young Massachusetts boy's heart. The New England Organ Bank counts almost 50 people who will ultimately benefit from Christopher's tissue donation.

To honor his legacy, a float in today's Rose Bowl will bear his picture, and that of 39 other organ donors. The floats will also carry 24 people whose lives were saved and aided by organ, eye, tissue, and blood donors. OneLegacy, a nonprofit organ and tissue recovery agency serving Greater Los Angeles, organized the floats along with sister organizations.

Every once in a while, Christopher's mother receives a letter announcing that another piece of his tissue has been used for transplant. "When I get the letters, I cry," she said. "But I know it's good."

Advice: Sign an organ donor card and keep it in your wallet.

Browse for related stories in the index at the very bottom of this page, or read an organ recipient story.

Thanks to Sarah Schweitzer for the source article in today's Boston Globe.

Six pack? I have a keg: Vince Wilfork, diet and diabetes

Vince Wilfork plays nose tackle for the New England Patriots. He's listed at 325 pounds. That girth is needed to hold his ground – a key responsibility for the nose tackle.

"Six pack? I have a keg and I’m proud of it," he says.

But in the off-season he read "The Abs Diet." His wife grabbed it before he could read it, and she began conducting weigh-ins and demanding three workouts a day, starting at 5 am. He lost weight, but kept his strength. Indeed, without his normal girth he has been just as strong, he realizes, if not stronger, and quicker too.

As of mid-December, he had made 64 tackles while anchoring the New England Patriots' fourth-rated defense. He earned his first Pro Bowl (all-star) berth on Dec. 18. He says he owes the honor to his wife's nudging.

He'll keep working at controlling his weight after this season ends. "I know that overnight it's not going to happen. It's going to take time, and every year we're going to attack that."

Vince's father had diabetes and died at 48. His mother died at 46 from complications of a stroke. Now, Vince and his wife host an annual NFL draft party to raise funds for the Diabetes Research Institute.

Advice: Be as unyielding as Vince Wilfork in defending against the strong pushes you feel toward binging. Good luck with the New Year's Resolution!

Browse for related stories in the index at the very bottom of this page, or read an athlete story.

Thanks to Christopher Gasper for the source article in the Dec. 20 issue of the Boston Globe.