The fund was his baby: An activist diabetes patient advocate

In addition to a career as a successful California real estate developer, Robert Klein got another job: overseeing the $3 billion stem-cell-research fund that he initiated and California voters approved in November 2004.

Here’s Ms. Dana Reeve’s story about him:

The fund was Bob's baby, and it grew out of a crisis in his life. When juvenile diabetes was diagnosed in his young son, Bob Klein immediately began researching cutting-edge science in pursuit of a cure. Stem cells emerged as the clear-front runner, but the moratorium in federal funding was hindering research. So Bob began to design, draft and push through the enormous piece of legislation known as Proposition 71.

In the last few months of his life, my husband, Christopher Reeve, joined forces with Bob to raise awareness about Prop 71. They held fundraisers together, and before he died Chris taped a commercial for TV. Bob wanted to run the ads but wouldn't do it without my permission. He didn't want to exploit the situation. I gave the go-ahead. It's what Christopher would have wanted.

Prop 71 passed, and led to the creation of the California Institute for Regenerative Medicine. Now Robert Klein leads its governing board. Time magazine honored him in 2005 as one of the most 100 influential people. He’s using his wealth, passion and influence to find a cure for his son’s disease.

Read another of our hero stories, or read the source stories of Dana Reeve and Wikipedia.

Lost paperwork, lost life: A Medicaid coverage error

Fourteen-year-old Devante Johnson was an honor student and athlete living with kidney cancer in Texas. Medicaid paid for his chemotherapy, radiation, and other treatment.

Aware of the need to continue his Medicaid coverage, his mother submitted the paperwork to renew his coverage two months before the deadline. But in Texas and in many other states, according to Bob Herbert of the New York Times, there is a concerted effort to undermine programs that bring government-sponsored healthcare to poor and working-class children. “They kept losing the paperwork,” his mother later told Mr. Herbert, so she submitted new applications, made dozens of phone calls, and sent many faxes. But Medicaid staff dropped Devante’s coverage.

When the coverage lapsed, Devante’s treatment ceased. He got sicker. His mother, Tamika Scott, said, “After awhile it was like his body was so frail and he was so weak he could barely walk on his own.”

Four months after coverage had lapsed, staff corrected their mistakes and reinstalled his coverage. It was too late. He passed away in March from kidney cancer. “He would be with me today if they hadn’t let his insurance lapse,” his mother says.

Advice if the worst happens: Tell your story to rouse and warn others, like his mother has. Tell your Texan friends to relay their opinion to Texas Governor Rick Perry.

Read more encouraging Medicaid access stories, or Bob Herbert’s source story: “Young, Ill and Uninsured,” in today’s New York Times.

She sent the insurer her War Documents: The insurance warrior patient advocate

A 57-year-old massage therapist from Seattle with a master’s degree in French literature seems an unlikely consumer militant, but Laurie Todd was forced to become one when she was diagnosed with appendix cancer in 2005. After learning that the only available treatment was a lengthy surgery performed by just a handful of surgeons, she was further stunned to learn that her health insurer deemed it "out of network" and wouldn’t pay.

"They said, in essence, 'Go home and die.'" she recalled. "For me, it was like waving a red flag in front of a bull. The idea that there was this lifesaving treatment for me, but I’m going to die because my insurer wouldn’t pay for it, was totally ridiculous."

She spent weeks preparing her appeal. She pored over HMO Web sites, read dozens of lawsuits against health insurers and called every patient advocate agency she could find. Within days of receiving what she called her "War Documents," the insurer agreed to cover the surgery that saved her life.

After that, Laurie said, she began helping other people who were stymied by their insurance carriers. Then she wrote Fight Your Insurance Company and Win: Secrets of the Insurance Warrior (available at her web site). "I wish to God there was no need for such a book," she said. "But what I’m doing is empowering people to save their own lives."

Laurie’s Advice: "You have to amass evidence and proof. You have to do research. You have to be your own medical case manager. You have to do whatever it takes to get them to pay."

What if someone is too sick to launch the sort of battle she describes? "Find family or friends to do it. Either you give up, or you take charge."

Read a story about the difference insurance coverage can make, or read Dianne Williamson’s source story.

[I don’t get any money for recommending Laurie’s book, which I haven’t read yet.]

At least my dog feels better about it: Michael J. Fox as patient advocate

Swaying from the unrelenting progression of Parkinson's disease, actor and patient advocate Michael J. Fox challenged the biotechnology industry Monday at its massive annual convention: "Who's funding innovation today?” Michael, who began a foundation to fund research into therapies for Parkinson's, criticized the industry for not placing enough emphasis on risk taking that he said could lead to therapies for 20,000 of the world's 30,000 identified diseases.

Not enough emphasis is being placed on the importance of translating basic scientific discoveries into new therapies, he said. For instance, the drug he takes is 40 years old. But the industry recently turned out a new antidepressant for dogs. My symptoms may not be getting better, but at least my dog feels better about it," he joked.

While patient advocates have always lobbied the biotechnology and pharmaceutical industries, Fox is emblematic of the greater voice and role they now hold. In the face of stagnant federal funding for basic scientific research, patient advocacy groups such as the Michael J. Fox Foundation are pouring millions of dollars into research through grants. "It's about spending the money more effectively," he said. He suggested the industry rethink its definition of success and focus less on capital return and getting on the cover of Science or Nature magazines - and instead judge success by the effect on patients' lives.

His words carried extra clout because his foundation gave $7.5 million through seven grant programs to 16 companies. His foundation aims to spend the money in the best possible way: helping take away some of the barriers or risks that prevent promising discoveries from moving down the long and expensive pipeline to commercial products.

Michael is putting his money where his heart is. He is leveraging his celebrity and his money to find a cure. His energy, commitment and imaginative steps toward this goal make him a patient advocate hero.

Advice: Look for ways you can use your assets and skills as an effective patient advocate. Be Like Mike.

Read another of our patient advocate hero stories, or Terri Somers’ source story.

They didn’t warn her, the jury said: A menopause drug lawsuit

Merle Simon had taken Provera for ten years. The New Jersey woman was one of as many as six million women who took the pills to treat menopause symptoms such as hot flashes and mood swings before a 2002 study by the National Institutes of Health that highlighted the drug’s link to cancer.

She has just won a lawsuit against Pfizer, which now owns Upjohn, the company that made Provera. In awarding her $1.5 million, the jury said the drug maker had failed to adequately warn her of the risk of invasive breast cancer. Merle took Provera starting in 1992, her lawyer, Jim Morris, told jurors. She stopped taking the drugs after being diagnosed with breast cancer in 2002, he said.

Advice to women nearing menopause: Carefully consider the risks and benefits before starting hormone replacement therapy. Useful background information appears here.

Read another of our stories, about the beneficial use of hormones, or the source story in today’s Boston Globe.

He’s engineering his own cure: A Multiple Sclerosis Patient Advocate

He learned engineering at MIT, and then launched three high-tech start-ups. That was before he was diagnosed with Multiple Sclerosis. This is Art Mellor’s story:

Like for most people, it was good news when I got diagnosed with MS, because the other thing it could’ve been was a brain tumor.

Being an engineer, I thought, I have this problem; how do I stop it? I got a bunch of books at the library, which said, basically, You’re gonna be a cripple, here’s how to deal with it. Then I went on the Internet, and it seemed to be the same paragraphs from the National MS Society pasted onto every web page. I complained to my neurologist; he gave me textbooks and articles, and I read them. I started to get scared, because none of them had analysis or synthesis of findings; instead, it was all description. So much of medical research is description! - not about coming to a conclusion. When I realized that we’ve really not learned any answers to key, critical questions in MS, I didn’t believe that I was reading it correctly. I met with my neurologist and MS researchers, and they all confirmed, No, you’re reading that right. So at first I thought I’d get a Biology degree and work on the tough questions. Then I realized the problem wasn’t that more smart people were needed in the lab; there are a lot of smart people in the field; it was a management problem—it’s about orchestrating the components of the system properly. I realized that that’s what my background is about—getting a bunch of people together, deciding on the right things to do, and raising money to make it happen. So I quit my job, and I met with my neurologist a bunch of times about what to work on. Our conclusion was that the CAUSE of the disease was the most important underserved area.

Since start-ups have been my whole career, the thought of starting one wasn’t a detriment to me; that was the easy part. It was hard to do it the first time, but this would be my fourth.

So I set up the Accelerated Cure Project for Multiple Sclerosis. We’re a nonprofit, based in Waltham, Massachusetts.

I’m proudest at getting a six-center IRB [hospital Institutional Review Board] approved study running. Researchers are collecting samples of blood and data from people with MS for the repository. Now I’m starting to talk with researchers about the studies that will be done on it.

Basically, the repository we’re building is a platform. Researchers now think that for someone to get MS involves a genetic susceptibility and an environmental trigger. So we have to be able to study all of them, on the same people. That’s hard to do because MS is so rare, so it’s expensive to collect data, and because scientists are so specialized. By having a repository, we can get a geneticist to do genetic screens on some samples, and get a virologist to study their viruses, and a toxicologist to study environmental exposure in the same people, and then we can join their findings. We can look at the genes that are associated with those people’s viruses, and relate this to those same people’s environmental exposure.

It’s like we’re laying railroad tracks. Scientists are like a train that can go 300 mph, but there are no tracks for them to run on at that speed. They can’t really build the tracks themselves —it’s expensive, administratively difficult, and not publishable. The government can’t make MS a big priority because MS is not prevalent, not fatal, and not contagious, so it’s pushed to the bottom of the barrel, otherwise.

Art is an engineer, not a poet, so when I applauded his vision, he corrected me: "The vision is only in the doing of it."

Advice to MS patients: Forward this to your friends. Read more at his web site, and consider giving blood samples to the Accelerated Cure Project for Multiple Sclerosis.

Read a story about an MS simulator.

I have a love affair with life: A heart transplant patient advocate

He’s feeling pretty good these days, all things considered, he says. Stanley Epstein, now 80, lives in New Jersey, six years after receiving a new heart from a 24-year old donor. Earlier, he had had two major heart attacks and two three-artery bypasses; then his doctors told him they weren’t working. But most hospitals at the time wouldn’t consider transplants for people over 65.

“I went into the computer and searched for transplant centers that would take people over 65,” he says. Three accepted him; he chose one—the University of California at San Diego. There, he had the surgery, and overcame a serious complication with post-transplantation medication that almost destroyed his kidneys. Then he traveled the long road to recovery.

He had benefited from a support group of people awaiting transplants. They would meet regularly to encourage each other. The group also gave members a duty that kept them from dwelling on their own poor health. Stanley was especially moved by one group member who died awaiting a heart and lung transplant. “After she passed away, I was determined to find a way that I could direct my energy in promoting transplants,” he explains. Now he is coordinating a support group in New Jersey, and volunteering with the New Jersey Organ and Tissue Sharing Network, a nonprofit organization that helps acquire and place donated organs.

“I have a love affair with life, and that’s the one major thing in forming these groups - to convey that love affair [to other transplant patients].”

Advice: Study what Stanley has done: he searched for transplant centers. He selected the best of several. He participated in a support group. He has a powerful positive attitude. He is helping other patients through existing organizations. And he is creating new resources for other patients.

Read another story of our patient advocate heroes, or read TRISTAN J. SCHWEIGER’s source story.

A point guard has done more to publicize this than my last 400 publications: Eye cancer

Derek Fisher showed up with his baby girl Tatum at the New York office of Dr. David Abramson at Sloan-Kettering Cancer Center on Monday. The doctor was able to inject a strong anti-cancer drug into her eye’s blood vessels, probably killing the retinoblastoma (eye cancer) and saving her eye.

The following day, Derek, a point guard now in the playoffs with his Utah Jazz teammates, spoke at length about the family’s ordeal, generating publicity. Then he flew back to Salt Lake City, and helped his team win Game 2. “A very good point guard has done more to publicize this than my last 400 publications combined. It’s quite extraordinary,” Dr. Abramson said.

Advice for parent advocates: Use your contacts to spread the word about successful new treatments.

Read another of our celebrity patient advocate stories, or Peter May’s source story in today’s Boston Globe, “In the Bonus Situation: Fisher scored points for cancer treatment”.

He decided to spend his remaining time in style: Cancer misdiagnosis

John Brandrick, 62, was told two years ago that he had terminal pancreatic cancer. He decided to spend his remaining time in style, quitting his job and spending his savings on hotels, restaurants and holidays.

A year later, doctors in southwest England revised their diagnosis: John was suffering from pancreatitis, a non-fatal ailment.

"My life has been turned upside down by this," he said. "I was told I had limited time to live. I got rid of everything — my car, my clothes, everything."

He said he did not want to take the hospital to court, "but if they have made the wrong decision they should pay me something back."

The hospital said there was "no clear evidence of negligence" on its part, adding, "Whilst we do sympathize with Mr. Brandrick's position, clinical review of his case has not revealed that any different diagnosis would have been made at the time based on the same evidence," the hospital said in a statement.

Advice to people receiving a dread diagnosis: Get a fully independent second opinion. Live your life to the fullest extent you can.

Read another of our cancer misdiagnosis stories, or the Houston Chronicle’s source story on May 7.

A larger-than-life victim: OxyContin adverse drug reaction lawsuits

Sean Barry, who at 35 had become the youngest college president in New England, was known as a larger-than-life character who rose from modest beginnings to head the college. He was beset by health problems throughout his life, winning a five-year battle with leg cancer after 18 surgeries, only to have his leg amputated in 1992.

The cause of his death remained a mystery late last year. Results of a toxicology test confirmed that an excess of oxycodone, which is the active ingredient in painkillers such as Percocet and OxyContin, killed the 42-year-old Barry. He died Nov. 16 in his childhood home on Marlboro Street in Quincy.



Sean is one of hundreds of Americans each year who have died after taking OxyContin. Why so many? Today’s newspapers reveal that the drug’s maker had long deceived doctors, leading them to believe OxyContin was not addictive. Three executives of Purdue Pharma, the drug maker, pled guilty yesterday to criminal charges in Federal court. The judge levied fines totaling $630 million. This includes $130 million in civil lawsuits by pain patients who claimed they became addicted as a result of having OxyContin prescribed to them. Barry Meier writes in today’s New York Times, “Purdue Pharma…heavily promoted OxyContin to general practitioners, who often had little training in treating serious pain or in recognizing signs of drug abuse.”

Advice: If you have pain severe enough to bring you to the doctor, ask your doctor about alternatives to pain-killing drugs.


Read another story of a lawsuit on a pain-killing drug’s side effects, or read John Kelly’s source story in today’s Patriot Ledger.

One doctor got $689,000: Adverse drug reactions of atypical anti-psychotic drugs

Anya Bailey developed an eating disorder after she turned 12, so her mother brought her to a psychiatrist. The doctor prescribed Risperdal, a powerful antipsychotic drug that had been created for schizophrenia. The FDA has not approved Risperdal for the treatment of eating disorders, but doctors can prescribe drugs as they see fit, and increased appetite is a common side effect.

Anya gained weight, but developed a crippling knot in her back (dystonia), and often awakes, crying in pain. She now receives regular injections of Botox to unclench her back muscles.

A doctor at the nearby Mayo Clinic, which prevents doctors from receiving lecture money from drug makers, insisted that Anya stop taking Risperdal. Anya got counseling, which ended in March. Now she is back to a normal weight, without the help of drugs. Anya’s mother wishes she had waited to see whether counseling would help, before trying drugs.

Anya’s mother was surprised to learn that the evidence backing the use of such drugs was minimal: the relevant medical trials studied as few as eight children. She was also surprised to learn that the psychiatrist had received $7,000 from Johnson and Johnson, the maker of Risperdal, for lectures about one of J&J’s drugs.

Doctors claim that payments from drug makers do not influence their prescribing patterns. But an analysis by the New York Times disputes that, finding that psychiatrists who received at least $5,000 from the makers of these “atypical anti-psychotic” drugs prescribed them three times as often as doctors who received little or no money from drug makers.

One doctor received “more than $689,000” for her drug talks. The last eight presidents of the Minnesota Psychiatric Society all received money from drug makers.

Advice: Ask the doctor what studies say on the long-run effects of the drug being prescribed. Ask about alternatives to drugs, too.

Read another of our adverse drug reaction stories, or the source story in today’s NY Times, “Psychiatrists, Troubled Children and Drug Industry’s Role,” by Gardiner Harris, Benedict Carey, and Janet Roberts.

Ten years later—God is good: Brain tumor

Ten years, 14 albums, & 43 states later, David M. Bailey and his music are alive and well, challenging all of us to live passionately and treasure the beauty of each new day. Here’s David’s story:

I was diagnosed with a GBM IV (glioblastoma brain tumor) in July of 1996. After a month of excruciating headaches, I fell over one morning; my family called an ambulance, and then I was life-flighted to a larger hospital where I had emergency surgery to remove a baseball-sized tumor. The surgery was extremely successful.
After a crash-course on malignant brain tumors, we realized we had no time to wait. We saw a regular medical oncologist, as referred by the surgeon. He gave us little hope and only offered a clinical trial using chemotherapies that had not really shown much success in treating GBM - plus, it was a “randomized trial” which I was not interested in for my care. He then did the very best thing he could have, which was to tell me I needed to see a NEURO-oncologist - someone who specialized in heads.

We contacted one hospital but were not satisfied with their responsiveness. I searched on the Internet and found an amazing website that listed all clinical trials for brain tumors in the whole country. I printed out a list and began cold-calling contact persons for various clinical (experimental) trials across the nation. I also made an important decision - I figured that if there really were no cure, it was more important to find the right PEOPLE than the right DRUG - first of all because I'm not a neurologist who can understand them all and more importantly because drugs will come and go, work and fail, but the right people will stick by your side through it all. I was lucky - my third call was to the brain tumor center at Duke University. Dr. Henry Friedman returned the call - at 10:30PM! He said "David, you're too young to die [I was 30]; come down, page me, and I'll see you immediately."

We collected my scans, microscopic slides, and embedded paraffin slabs from the biopsy and drove to Duke the next day. Though Henry is in research and conducts so many trials, if a patient is not responding positively to an experimental treatment, he pulls them off of that trial and tries something else. There was a lot of comfort in knowing he had a whole arsenal and was willing to use it. The patient's treatment is much more important to him than the research results. With trust came a huge sense of relief. Because of that trust, we didn't feel a need to spend hours seeking other opinions or therapies from around the country. Because of that trust, we found an ability to face the facts, leave the medical calls to the team and move on tackle my intellectual, emotional, and spiritual needs.

We never looked back!: The Treatments My scans showed a lentil-sized piece of tumor that remained. By Thursday of that week we were coming home with the first round of pills for a new promising chemotherapy trial called Temozolomide (Temodar). I took the pills every night for five nights, then had three weeks off. I had some initial difficulty with nausea and fatigue, but nothing that medications and naps couldn't handle. Though it's not a 100% effective-magic drug, it worked for me. After just one month, the tumor was gone! I took three more rounds of the Temozolomide to complete the trial and continue fighting any invisible cancer cells. I was about to start the important 3-D planning for conformed field external beam radiation when they discovered a second, old, low-grade tumor which was surgically removed.

The Annoying & Important Stuff
In late 1998, we noticed a loss of peripheral vision on my left side. I tried 'prism' glasses to help correct it, but didn't find them effective, so I just learned to be more careful looking around. In January 2000 I did a 3-hour neuro-psych test to get a baseline reading on various cognitive tasks. The final report said I still think fine, but was perhaps a bit slow when changing topics - but some will say I've always been that way.... So I've lost all my left peripheral vision, have some balance issues, tire quickly, and still have the occasional seizure, but these are really, in the end, just annoying things. Life goes on and I'm still here to be a part of it.

I'm on a 6-month checkup cycle and on July 4, 2006 celebrated 10 years of surviving the beast. Treating a brain tumor is a complex thing- unlike a broken bone, you can't just treat the physical ailment - the tumor attacks who you are, and thus your intellect, feelings, and spirit area are all threatened and must be cared for - and it's too much for one person to do it all, especially when you're fighting hard physically.

I found three things that put my life back into balance. Faith - For me, faith in a God who loves me and would stick it out with me no matter what, a faith I had started to lose over the years - the foundation of the house of my life. Family & Friends - the walls of my life behind which I could find shelter from the winds, and could lean upon when weary. Future - the new windows and doors of my life that showed me the possible, and gave me the chance to start believing in dreaming. I think we all have a dream for a reason and I think we all have the time we need to make it happen. In some ways, we are the lucky ones because we are given a chance to really understand how precious is the gift of life and how fulfilling the moments can be. I returned to music and gradually began a new life as a full time performing songwriter, and there are a million other smaller dreams I'm still working on.

Reminders & Resources Doctors are incredible people, but only human. Remember that whatever they tell you is ultimately just their educated guess. They are proven wrong every day. If “there's one chance in 500, someone's gotta be the one." Never stop thinking that you're the one. If there is a brain tumor support group in your area, join it. One of the greatest comforts and strengths you will find is in the sharing with others - particularly as you discover that you are in a position to help others - and as you do so, will help yourself. It's a magic that never fails.

The Duke Brain Tumor Center, including the family support team, can be contacted during business hours at 919) 684-5301. Their policy is to return your call within 24 hours. If you need to speak to Henry right away, you can page him at 919-970-5656. Feel free to use my name as a reference- He will probably call late at night and has been known to speak quickly. - Be sure to have your questions ready so you don't forget. He always does better than his best.


The Brain Tumor Mailing List: This is an astounding resource where over 900 patients, caregivers, and medical professionals from around the world to ask questions, make comments, and provide answers to just about anything you can think of. I've made countless friends on the list who are a big part of my life today. To subscribe: check out thebraintrust.org


Websites There are a LOT of great websites with brain tumor information. I suggest starting with the following: Al Musella's List of Clinical Trials and Treatments - http://www.virtualtrials.com The National Brain tumor Foundation - http://www.braintumor.org The American Brain Tumor Association- http://www.abta.org



David took a crash course on his condition. He found a hospital that was responsive, and found a doctor he trusted, who cared more about him than about research. His faith, friends and family, and belief in his future sustain him.

Read an inspirational story of a stroke survivor, or David’s full source story.

A surgeon quarterback turned Samaritan: Heart disease prevention

Dr. Arthur Roberts’ story:

At age 58, he had long since hung up his NFL Dolphins jersey and heart surgeon’s scrubs. “I still had the athlete’s mentality, where you think you’re indestructible.” But the record-setting Columbia University quarterback wasn’t following his own advice about exercising and eating well, and he suffered a stroke six years ago.

Feeling lucky and grateful, he set up the Living Heart Foundation, with funding from the NFL players union. He’s trying to prevent deaths like those of Reggie White—the Hall of Fame defensive lineman who died at 43 from cardiac arrhythmia—and of lesser-known athletes like Kevin Mitchell, at age 36,from a massive heart attack, and Johnny Perkins, at age 54, of complications after heart surgery.

Kevin Guskiewicz, the Director of the Center for the Study of Retired Athletes at the University of North Carolina, explains, “the retired athlete can’t exercise because of the injuries he’s sustained and the pain he is in, and that leads to higher weight depression, bad eating habits, high blood pressure, and so on.” Guskiewicz calls this the Snowball Effect, which he discovered through studying 27,000 retired football players.

Advice to spouses of retired athletes: Get your coach’s whistle and have your spouse lift hand weights during every TV commercial during the game.

Read another of our football stories, or Harvey Araton’s source story, “Brush with Death Puts a Doctor on a Mission,” in today’s New York Times, page C-16.

Scrub those scrubs!: A professional appearance with little fuss

Scrubs, of course, are those distinctive, simple, usually blue, shirts and pants that doctors and nurses wear while in the operating room.

Wearing scrubs became a badge of the profession, like wearing a white coat or carrying a stethoscope. Since then, it has become a fashion statement to wear scrubs outside, e.g., while shopping in the supermarket. Now it connotes high tech, medical science, good health, saving lives, and looking like "Dr. Meredith Grey" or "Dr. Preston Burke."

Scrubs are characteristically of cotton. Now there are also scrubs made of blends of polyester and cotton to maintain "a wrinkle-free professional looking appearance with little fuss."

They’ve become their opposite. I hung out on Longwood Avenue in Boston, near several Harvard teaching hospitals, with two Australian friends, as they laughed uncontrollably every time they’d see a doctor or nurse on the street in their scrubs. Then I got it: An urban street is far from sterile. If scrubs mean, "We’re taking special care to be sterile," then why are clinicians wearing them on the street? Just because it’s easy, to look cool, and announce their status (and announce they’re not keeping them sterile)? Will they wear the same scrubs in the O.R.?

Do you get the joke? -And did you realize the joke’s on us?

Advice: If you see your doctor or nurse on the street in scrubs, smile, but don’t laugh. And buy some for yourself—they really are comfortable, and look cool.

Read a patient safety joke.

Not a single fall: A geriatrician’s help

She was 85, with oval glasses, a lavender shirt, and a smile. Small but sturdy, Jean Gavrilles had come in walking steadily, no support required beyond her orthopedic shoes. She said her internist had recommended she come in to see Dr. Jeurgen Bludau, a geriatrician.

She mentioned lower back pain over the last few months, arthritis in her fingers, high blood pressure, glaucoma, some recent “bathroom problems” that required her to wear a pad, and a lung nodule.

A widow with a home near Boston, she had long lived alone except for her Yorkshire terrier. She did her own cooking and cleaning, and managed her own medicine and her bills. She told Dr. Bludau about her day, and her diet, in response to his questions.

Then the doctor asked her to sit on the examining table. She struggled to climb up, her balance teetering on the step. The doctor spent much of the exam time in looking at her feet.

She was doing well, he said—mentally sharp and physically strong. The danger was losing what she had. The single most serious threat she faced was not the lung nodule or the back pain; it was falling.

The three biggest risk factors for falling are poor balance, taking more than four prescription medicines, and muscle weakness. She had two, or even three, of the risk factors, putting her at grave risk of a debilitating fall. Her balance was poor; she walked with splayed feet, and her feet were swollen, with her toenails unclipped. There were sores between the toes, and the balls of her feet had thick, rounded calluses. And she did not seem to be eating enough to keep up her strength. She admitted having lost about seven pounds in the previous six months. She was on five prescription medicines, one of which risked dehydration, which may cause dizziness.

His job was to support her quality of life—here, to help her retain as much function as possible, he said. So he had Jean see a foot doctor (a podiatrist) every four weeks, for better care of her feet. He switched one medicine so it wouldn’t cause dehydration, which could make her dizzy and maybe fall. He recommended a snack, and getting rid of the low-calorie and low-cholesterol food, and having friends or family join her at meals, so she would eat more, and build her strength.

Nine months later, Jean turned 86. She’s eating better, and has gained a pound or two. She still lives comfortably and independently in her own home. And she has not fallen, even once.

Advice for elderly people and their patient advocates: Get a geriatrician!

Read a story about a frail elderly woman, or Dr. Atul Gawande’s source story in the April 30 issue of the New Yorker.

Suck it up: A simulator of Multiple Sclerosis

The woman in the booth puts on headphones, and hears a woman’s voice and the sounds of everyday life. At the store, she opens her wallet and the screen suddenly goes blurry, from a Multiple Sclerosis attack that prevents her from distinguishing between her $20 bills and $1 bills. She tries to pick up a cup, but it falls out of her hand, with the drop simulating the sudden loss of coordination that MS can cause. Her fingertips vibrate and tingle insistently.

With a video, headphones, and two wobbly treadmill tracks, the machine mimics an MS attack. The RJO Group designed the simulator, which was funded by Biogen and Elan Pharmaceuticals.

Art Mellor, an MS patient who runs the Accelerated Cure Project for Multiple Sclerosis, went through the simulator on Monday, at a conference of the American Academy of Neurology. “That’s what it’s like,” he said. MS patients often don’t have outwardly detectable symptoms and must depend on doctors believing their descriptions. Some patients, he said, get “the equivalent of ‘Suck it up,’ or ‘Oh come on, it’s not that bad.’”

The marketing theory behind the simulator: Doctors will be more empathic—and will treat the disease more aggressively – and that’s spelled m-o-r-e d-r-u-g-$.

Advice to MS patients and their advocates: Ask your neurologist if he or she has experienced the simulator, which is now touring conferences.

Read another MS story, or read Stephen Heuser’s source story in the May 2 issue of the Boston Globe.

He’s fulfilling a promise: Breast cancer misdiagnosis

Bill realized on their first date that he was looking at his future wife. After their second date he and Maureen moved in together and never parted. Eventually they had two sons, Erik and Ryan. Happily living together, active in their church and well-loved in their community, they were your average working-class American couple, Bill says.

In late 1994, Maureen found a small lump in her left breast while performing self-examination. Over the next two and a half years, three different doctors told Maureen she had absolutely nothing to worry about, that the lumps in her breast were harmless fibroid cysts. Once her cancer was finally diagnosed, she lived only one year, undergoing radical mastectomies, multiple surgeries, chemotherapies and stem-cell replacement therapy.

Maureen Thiel passed away at 43 due to a delayed diagnosis of breast cancer. She left behind a husband and two young sons. Maureen's story is a tragically shocking case of a deadly misdiagnosis that clearly demonstrates the need for a Universal Standard of Care for the diagnosis, treatment and follow-up of breast lumps.

According to he Universal Standard, a biopsy would have been performed on Maureen within a month after she first found a lump. If she had received an earlier biopsy, there is a good chance she would still be alive today, a good chance her devoted husband, Bill, would still have a wife, a good chance their two sons, Erik and Ryan, would still have a mom.

Maureen's Mission is the fulfillment of a promise a husband made to his dying wife.

Advice: Become an advocate, as Bill Thiel has.

Read another of our breast cancer stories, or the source and web site of the nonprofit organization, Maureen’s Mission.

A doctor’s visit that changed history: An empowered patient

Boris Yeltsin was running for re-election as the first President of Russia. But he had had a heart attack, and was having chest pain. A Russian surgeon said the 65-year old leader wouldn’t survive the coronary bypass surgery he needed.

Yeltsin, the second most powerful man in the world, was clearly an empowered patientt. He asked for a second opinion—from Dr. Michael DeBakey. DeBakey was confident that an excellent Russian surgeon, Dr. Renat Akchurin, could safely perform the operation. Yeltsin’s medical team followed DeBakey’s advice to correct thyroid and other problems to prepare him for the bypass, then performed the surgery competently.

"All the doctors agreed Yeltsin would have died if he did not have the bypass. He was deteriorating and going into early heart failure," DeBakey said in an interview. "We gave him 10 ½ years of comfortable life."

"I’ll do what you say if you can put me back in my office," Yeltsin had told Dr. DeBakey. As a patient, Yeltsin "was not as bossy as he was with some of his Russian doctors," DeBakey said, adding, "He didn’t get along with some of the doctors there. But he took a liking to me, listened, and that made things much better."

Advice: Be like Boris: Listen to your doctor, and do what he or she says, even if you usually give orders rather than take them. Use your connections, or those of your advocate, to get a sound second opinion.

Then use your extra years of life to change the world – in a better direction than he did, picking a dictatorial former spy chief, Vladimir Putin, as his successor.

Read another of our world-changing medical stories, or Dr. Lawrence Altman’s source story in the May 1 issue of The New York Times.

They never sued: Missed cancer diagnosis

When she and Isadore met 50 years ago in the Toronto area, she was only 16. Before the teenaged sweethearts married, she was only 16. But Rosalie Wise Sharp and her husband have been married ever since, proving a long marriage can be a good thing.

Their marriage helped them overcome a tragedy – the loss of one of their four sons, Christopher, at age 17, from misdiagnosed melanoma.

“You don’t really ever get over it. But you put it over there,” she says, motioning to one side. “When you have a husband and other kids, you do what you can to make it easier for them.”

They never sued the doctor, now deceased, who misdiagnosed their son’s cancer. “What good would it have done to sue him? It wasn’t going to help my son or us, so if it wasn’t going to be helpful there wasn’t any point. You just have to accept it. Look, you’re dealt blows. Life does that. People always say cancer patients have so much courage. But what choice do you have? We are here to enjoy our lives.”

Advice: Grieve, and then enjoy your life, zestfully.

Read another of our stories about living zestfully, or Sarah Hampson’s source story in Toronto’s Globe and Mail.

She didn’t fall that far: A nursing home lawsuit

Joy’s story:

My Mom was in a nursing home & fell. They called me, & said it was OK during the night, to come in the morning. When I got there I couldn't believe it! - she looked like she was in a fight with Mike Tyson & lost. She's 93, had a big hematoma on head - eyes all black, nose broken, really bad. I asked why 911 was not called to take X-rays. They said the doctor didn't feel it was necessary. I fought with them for 2 days. Then they called & said she was sent to hospital "unresponsive." EM couldn't believe what bad shape she was in & never brought in. She was never the same.

I got a lawyer; he took pictures & we have waited. He calls today & says the nursing home has problems with their Insurance & want us to settle for $25,000; she gets $15,000. He said to take it because of the Insurance problem. A friend of my husband’s father had the same thing happen, only he died; same lawyer, same pitch - $25,000 and they get $15,000. Is that the going rate after what they suffered?!

This lawyer wants to go after the nursing home she's in now since after she was sent to the ER from the other nursing home & kept in the hospital, they asked if I wanted her in the nursing home next to the hospital, actually their name too. I checked it out and it seemed very clean, so I said yes. At this point she was all banged up but could walk.

She was admitted & a very short time later I got a call: “your mother fell!” I couldn't believe it. Back to the hospital, this time with a broken hip. She's 93 so I didn't agree to surgery, & the doctor said she probably won't last till the end of the year (he was wrong). But she never walked again & is in pain; she takes painkillers, & is usually in bed.

I couldn't go after them because where do I put my Mom then? The lawyer said, when she passes he can go after them but I don't think I will pick him.

What advice would I tell other daughters? I'm not a great one to ask. I had my Mom since she was in her 50's. It wasn't easy - she liked to run the show & be in charge, but was very good-natured. She didn't have much money since my Dad died young from a cerebral hemorrhage & botched-up brain operation. She took care of him for 5 years. It was terrible - we were only teens.

She was not in great health when we moved to Florida & declined, but I kept her at home & took care of her. At the same time, I raised my grandson, who had chronic Lyme disease, & took care of him. My daughter, his mom, is bi-polar & winds up living with us a lot. My husband is a big help (2nd one) but otherwise I got no help. My brother & his wife felt it was up to the daughter to do it.

I got through it, thank God, though I’m very tired, & my husband & I never got to go anywhere very much. It wasn't easy but I always felt it would be what God wanted me to do.

As far as the 2 nursing homes, the first didn't really care. I fought with them for 2 days as she laid suffering all bashed up with a broken nose, etc., to send her to the hospital. The other one seems to make her comfortable but is responsible for the broken hip. When I mentioned it the woman said she didn't fall that far!

Probably too long but that's only a bit of it.

Advice to adult children of frail elderly parents: Get a formal consult with an expert with professional training in pain relief (a nurse or doctor) to discuss options for pain relief.

Read another of our nursing home stories.

I need to be the sole focus of my exam: Patient privilege

D.J. Listort’s retort:

I resent the guilt trip laced behind the Ethicist’s advice to "find another way to do your fair share for the health-care community of which you are a member and from which you benefit" (in The NY Times Magazine of April 15). Because I do not wish to have residents or interns present during my examination does not mean I haven’t done my fair share by paying my (staggering) medical-insurance premiums or by waiting for what often is an interminable amount of time for my appointment.

I need the precious one-on-one with my doctors so that they and I may have a confidential and attentive session to discuss, diagnose and treat my ills. Why didn’t the doctor provide a form (what’s one more?) at the first appointment to cover a request to have residents present so that the rules, and my preferences, are clear before the examination starts? I’m sorry, but I need to be the sole focus of my exam, and I don’t need to be chided for insisting that I am.

Advice for patients: To guarantee privacy in your exam, discuss it with the receptionist when you arrive for the appointment.

Read one of our patient/physician partnership stories.

I don’t really want to be a hypochondriac: A heart disease story

At 76, Naomi Atrubin gets tired, but also stays active with duplicate bridge and book clubs. She goes to a gym and walks on a treadmill. She had chest pains last summer, and she is grateful that she lived to tell her story.

In October 1997, driving to a movie, she had mild chest pains, and blamed it on spicy mustard. She walked three blocks to the theater. The pains worsened. She told a friend she thought she was having a heart attack, but rejected an ambulance because of the likely cost. Her friend drove her to the emergency room, and in the hospital, doctors put in two stents (short mesh tubes to prop open a heart artery).

What if she has that weak feeling, or chest pains again? "I would like to think I would run like hell to an emergency room. But how tired to I have to feel? I don’t really want to be a hypochondriac."

Advice to patients with previous heart attacks: Remember that it’s better to be a live hypochondriac than a dead stoic. Get to a hospital emergency room immediately if it’s possible you’re having a heart attack.

Read another of our heart disease stories, or Gina Kolata’s source story in the April 8 issue of The New York Times.

He had a secret plan: A patient compliance story

Keith Orr thought he would surprise his doctor when he came in for a checkup. His doctor had told him to have a weight loss operation to reduce the amount of food his stomach could hold, worried because Keith weighed 278 pounds, had a very high blood sugar level, putting him at high risk of diabetes, and a strong family history of early death from heart attacks. Indeed, he himself had had a heart attack nine years ago, at age 35.

But Keith had a secret plan. He had been dieting and exercising for four months and lost 45 pounds. He imagined proudly telling the doctor what he had done, sure that his tests would show huge drops in his blood sugar and cholesterol levels. He planned to admit that he had also stopped taking all of his prescription drugs for heart disease since, he thought, he no longer needed them. He had never taken them regularly, so stopping completely wouldn’t matter much, he thought, in light of his improved diet and exercise.

But the surprise was not at all what he expected. A week before his scheduled doctor’s appointment, while at the gym in Boston on February 6, he felt a tightness in his chest—the start of a massive heart attack, with the blockage in an artery that doctors call "the Widow-Maker."

He survived, miraculously, with little or no damage to his heart.

Advice to people on aggressive diets and exercise plans: Discuss them with your doctor first.

Read another of our heart disease stories, or Gina Kolata’s source story in the April 8 issue of The New York Times, "Lessons of Heart Disease, Learned and Ignored."

She started small - very small: Undertreatment of mental illness

He had been a star as a student at Columbia University, with a 3.7 grade point average, and a lively wit that shone through his roles as sports editor of the newspaper, president of an a cappella group and actor in the annual student-written musical.

He had begun hearing voices years before, and had hidden from his family his struggles with mental illness since then.

His sister received the awful phone call on a Friday afternoon in March 2000: her 22-year old brother, Brian Malmon, had committed suicide.

So his sister, Alison Malmon, has started Active Minds, Inc., a nonprofit organization. She started small—very small: only three people came to the first meeting. Now they have 65 campus chapters, devoted to increasing awareness of mental illness. Active Minds seeks to ensure that everyone on campus knows what mental health services are available and when to use them.

Alison’s advice to people with troubled friends: “To help a friend that you’re concerned about, you should go and say, ‘I’m worried about you. Is everything OK?’, and walk them over to the counseling center.”

Read another of our mental illness stories, or Tamar Lewin’s source story in the April 25 issue of the New York Times.

Now he wears a different helmet: A veteran’s access to care

A bomb buried in the asphalt road hit Army Sgt. Michael Boothby’s Stryker military vehicle on Sept. 17, leaving three pieces of shrapnel in the back of his brain. Doctors removed nearly half of his skull to prevent permanent damage to his brain from swelling.

By December, he was back home in Kerrville, Texas. But there were problems with the V.A.—a mix-up with his patient number that delayed his therapy. He entered a rehabilitation hospital in San Antonio, where he has received physical, occupational and speech therapy.

Now he wears a padded helmet for protection. It makes his head sweat—but it’s not as hot as Iraq.

Advice for family and friends of brain-injured patients: These patients need an advocate to represent them, until they’re fully mentally competent.

Read another of our veteran’s stories, or John Tedesco’s source story on April 22 in the San Antonio Express-News.

Medication becomes like diamonds: An access & patient compliance story

"Carlos," a slight, soft-spoken man who makes a living ferrying tourists around Boca Chica in the Dominican Republic, arrived at the doctor’s office in 2000, near death. He had tested HIV-positive a few years before, but had been unable to afford the 30,000 pesos, or $1,000 a month, for medicine on the black market. The doctor started him on an older, cheaper drug combination, and then Carlos’ brother-in-law in the Bronx began buying medication from a "non-control" drug dealer (of prescription, non-controlled substances). Now, Carlos supplements his $300 monthly income by reselling pills he doesn’t need for about $80 a bottle.

"Medication becomes like money," says his doctor, "like diamonds for somebody, because they see their life in there. And it is in there."

Advice for patients like Carlos: If your doctor says you need the pills, take them.

Read a related black market access story, or Kai Wright’s source story in the May/June issue of Mother Jones.

Psst, Got antriretrovirals?: A wrong patient & compliance error story

For years, "Jerry" bounced in and of various jails for burglary, theft and armed robbery. He tested HIV-positive 10 years ago, apparently from having shared an HIV user’s needle. Later, while while nodding off on heroin, he stumbled in a subway platform, and lost most of his front teeth. Still, he has a wide, boyish smile.

He would use his New York State Medicaid card to buy prescriptions worth hundreds of dollars, then turn around and sell them on the street for as little as $20. "You’d take it, out of desperation," he says.

These days, he’s clean, and not desperate for cash, so he’s unloading his painkillers and the Marinol his doctor prescribes to help his appetite. When he finally finds the "non-control man”"who buys prescription ("non-controlled" substance) drugs, Jerry nets $80. The non-control man can sell them for huge profits.

Advice to HIV patients: Only ask for the meds you need. For the others, don’t ask, don’t sell.

Advice for Medicaid program managers: Look into possible fraud by tracking the prescription patterns of habitual criminals who are HIV-positive.

Read a story about access to treatment by a poor family, or Kai Wright’s source article in the May/June issue of Mother Jones.

If, if, if: A lab error story

Claire Packer, a 49-year old Englishwoman, had had anorexia for almost half her life. The eating disorder, related to an obsessive fear of gaining weight, may have weakened her bones (osteoporosis). When she fell down the steps in her garden in summer 2005, she fractured her thigh bone (femur). An earlier operation to put metalwork in her leg had failed, so surgery was needed again on July 14. After her surgery, Ms. Packer became ill with diarrhea. But a stool sample taken on July 21 was not tested until five days later, despite requests for test results made by medical staff on July 22. Although it would have been best practice for someone in Ms. Packer's medical condition to have been attended by a member of the physician's team daily, this did not happen from July 23 to 27.

An opportunity was lost to begin treatment for what turned out to be a serious infection with the superbug Clostridium difficile.

She died on July 31, 2005. The causes of death were specified as E-Coli endotoxin (septic) shock, Clostridial toxin antibiotic-related digestive disease (colitis), and malnutrition as a result of her anorexia.

Now, almost two years later, the deputy coroner has returned his verdict, on April 11: neglect contributed to her death. Her mother commented, "If the doctors had made the effort to go and see her, if they had recognized her symptoms, if they had requested and chased her test results, she would probably be alive today."

Advice to hospitalized patients and advocates: Ensure lab results arrive and are interpreted and heeded promptly.

Read another of our lab error stories, or Miriam Craig’s source story.

Fame didn’t get her better treatment: The Nanny’s misdiagnosed cancer

She went to gynecologists, an internist, a hematologist (blood specialist), an oncologist/breast specialist, a vascular (vein and artery) specialist, and a neurologist (brain specialist) before discovering the cause of her bleeding, cramping, and painful sex to be early-stage uterine cancer. She refused radiation, but underwent surgery. She claims that fame didn’t get her better treatment, though it may have gotten more attention for Fran Drescher, star of the TV show “The Nanny,” and author of Enter Whining and now, Cancer Schmancer.

Advice to the rich, beautiful and famous: Find a doctor who sees your internal beauty—and sees it clearly.

Read another of our misdiagnosis stories, or the source.

A friendly guy, but a bit rushed: A wrong patient error

I decided to try out my husband's doctor a few weeks back, as we're trying to consolidate some things. The doctor came in — a friendly guy, though a bit rushed — and ran through my chart. "I see you're not a smoker."

I agreed. Then he said, "I see you're a bit of a drinker, social drinker, huh?"

"No, I don't drink," I told him. I must have gotten sloppy on the patient questionnaire and somehow marked a "yes" when I should have marked a "no" when they asked about drinking is what I thought. It couldn't have been the doctor's mistake. It had to be mine.

So I asked him to change that on the form because I had it wrong. It wasn't until after I left the office and was talking with my husband that I realized I wasn't the one who had it wrong. Apparently after the nurse called me back, another nurse came looking for me. My husband, who waited for me in the lobby, told them they already had me back there. At which time the person next to him joked, "They've lost her!"

Turns out the nurse had pulled the wrong chart. The doctor thought he was seeing someone else. It was an entirely different doctor than I was scheduled to see — a partner, I guess. And since I was a new patient, I had no idea what the doctor I was supposed to see looked like, so I didn't realize the wrong man was seeing me. And he didn't realize I was the wrong patient he was seeing.

Fortunately, my case turned out OK. The doctor told me I had an upper respiratory and ear infection and wrote me a prescription. But I just wonder how often does something like that happen?

I called the doctor's office later to inquire as to what happened and they referred me to the nurse, who apologized and said it was her mistake.

Advice: Ask to look at your chart—it says yours, right on the label--or at least, it should….

Read another of our wrong patient stories, or the Shreveport Times’ source story

A Patient Advocate in the First Family?

We probably have the most unusual field of potential first families ever. A potential candidate, Fred Thompson, just announced he is in remission from lymphoma. Both John McCain and Rudy Giuliani are cancer survivors. Joseph Biden suffered a near-fatal brain aneurysm. Four potential first spouses have or have had serious medical conditions -- Cindy McCain had a stroke (as well as an addiction to drugs), Bill Clinton had bypass surgery, Ann Romney has multiple sclerosis, and Elizabeth Edwards has cancer.

These diseases give family members much painfully learned experience as patient advocates. It is likely that the next President and First Lady or First Man will know, first-hand, of the needs of patient advocates. And the personal health of at least one of them is likely to become an issue during the campaign.

If a candidate has a prepared position on patient safety when that person’s health crisis hits the media, the candidate can express genuine sympathy for their adversary’s situation, along with a thoughtful, cost-effective solution to an issue that both will last through many news cycles and affect millions of voters. Who knows? Long a motherhood and apple pie issue, patient safety legislation might become a reality in the next Administration.

Advice for patient advocates: Tell the issues experts in the presidential campaigns that they should prepare position papers now that show their candidates favor patient safety legislation.

Read another of our legislative stories, or blogger Sherry Greenberg’s source story.

Now his neighbors’ parents are Crusaders too: An undiagnosed cancer cluster

Randy Zook was an all-American offensive lineman, #72 on the Crusaders. Eight seasons of football at Indian Valley High School and Susquehanna University had made pain management a way of life. Ice packs. Tape wraps. Ultrasounds.

He had a bad back. And he did not truly acknowledge how much pain he had experienced until his university football career was over. A month after graduation, he had back surgery. It turned out, though, that Zook's pain probably had another cause -- aggressive colon cancer that had been spreading inside him, undiagnosed.

He died at 23, in March 2002.

Why did such a young man get colon cancer, in such an aggressive form?

And Jennifer Tietgen, 27. Brian Forgione, 24. And Patrick Kadel, 28.

All had died in a single four-month period of rapidly spreading cancers. All less than six years after they left that place by the stream in Selinsgrove, Pennsylvania. It seemed like too much for coincidence. To Patrick’s mother, Linda Kadel, it seemed like a red flag. What was going on in Selinsgrove, near that tiny stream?

She started to ask questions. Linda sent dozens, then hundreds, of e-mails to alumni, asking health questions. She showed her list to others, hiding the identities of sick people by using initials. Word of her research spread. Email, she learned, is powerful. She learned of other young Susquehanna alumni—ultimately 60 of them--who had cancer.

She looked around the tiny stream in Selinsgrove. Near one bank, not far from "the warehouse" where students lived, amid the vacant, run-down remains of the mill, Linda said she saw barrels that appeared to contain industrial waste. And there was a large, dingy storage shed with "Danger! Chemicals" scrawled on its sides. Above the words, a hand-rendered skull and crossbones.

She has written to state, county and local politicians and scientists. To date, no formal investigation has occurred, though the university has posted recent clean environmental test results on its website.

Debbie Magnotta, like Linda Kadel, wants answers: her son Vince Magnotta Jr., died at 20.

"I think," she told her husband, "it is up to us to do something."

Advice: If you suspect a cancer cluster, urge your state public health department and the Centers for Disease Control to investigate.

Read another story with a mother as advocate, or read Ford Turner’s source story.

A Smart Bacteria: A Misdiagnosis Error

In 1992, Dirk Almstedt was bitten by a mouse, while in Germany. Shortly after, a tick bit his wife Sonja. But neither of the Almstedts showed symptoms of illness then.

Seven years ago, when they moved to Wickenburg, Arizona, Dirk built a small business, and they had children. Soon afterward, the couple started noticing symptoms of Lyme disease, but the symptoms went undiagnosed until June, when Sonja became so ill that they sought medical attention.

"Her pain started at June 22, and life went to hell after that. It’s destroyed her completely,”"said Dirk. A neurological institute diagnosed her with Multiple Sclerosis, but the treatments didn’t help. Dirk researched her symptoms on the Internet, and found symptoms of chronic Lyme disease. Both Dirk and Sonja, and their six-year old daughter, now have confirmed cases of Lyme disease. Sonja suffers from severe "cluster headaches" and body pain. Needing to care for his sick wife and child, and two younger children, Dirk has had to take time away from his business, and he makes only one-third of his earlier income.

Lyme disease is hard to diagnose for five reasons. Most doctors have little or no experience in diagnosing Lyme disease. The "smart" bacteria reacts with the victim’s unique DNA, so that no two infected people have the same set of symptoms. Less than half of victims have a distinctive "bulls-eye" rash. It is almost impossible to grow in a laboratory, and is extremely slow-growing. It can change forms.

Advice: Spray insect repellent on your ankles before walking in the woods. If you get sick with a disease that’s difficult to diagnose, research your symptoms.

Read another misdiagnosis story, or read Patti Jares’ source story.

Each of the three placed the blame for her ordeal on another party in the courtroom: Cancer misdiagnosis lawsuit

Michelle Kachurak knew someone was responsible, and went to court to figure it out.

Doctors had detected high levels of hCG in the Pennsylvania woman’s blood, in fall 2000. Pregnancy and certain types of cancer are the only sources of HCG. In hindsight, it is clear that a rare protein in her body interfered with the test, yielding a false positive result. Though she likely never had any hCG in her system, doctors diagnosed her with choriocarcinoma, a life-threatening reproductive cancer associated with the uterine wall.

She began chemotherapy that September. The hCG never seemed to fully leave her system, even with increasingly aggressive chemotherapy.

She researched her symptoms on the Internet, and insisted on a urine test, which occurred in February 2001. The urine test showed no hCG. Unfortunately, her doctors failed to properly review the test results, and she only obtained the results months later. In the meantime, her chemotherapy continued—through a total of 12 rounds, over seven months.

Each of the three placed the blame for her ordeal on another party in the courtroom. The lawyer for the doctor who overlooked the urine test blames the doctor who made the misdiagnosis. The lawyer for the doctor who made the misdiagnosis blames Abbott Laboratories, which makes the blood test. Lawyers for Abbott Laboratories blamed both doctors, saying the product’s instructions clearly warned against using it to diagnose cancer. The doctors filed suit against Abbott, but have since dropped the lawsuit.

Advice: Read about your lab tests in TauMed’s free directory, and make sure you get a copy of the test results. After doing Internet research like Michelle, you may need to insist on additional tests.

Read another cancer story, or read Wade Malcolm’s source story.

Among previously healthy children and adults: MRSA

A story by the Centers for Disease Control:

Louisiana case 1. A previously healthy boy aged 10 years became ill with fever, cough, sore throat, and earache in both ears on December 6, 2006, and was treated with acetaminophen at home. The next day, his symptoms worsened and he was taken to a local Emergency Department in respiratory distress with a fever of 104°F (40°C). A chest X-ray was performed and revealed pneumonia in more than one lobe of his lungs. The patient was transferred to another hospital and admitted to the pediatric intensive care unit (PICU), where he required endotracheal intubation and mechanical ventilation. He was treated initially on December 7 with intravenous (IV) ceftriaxone; vancomycin was started the next day. On December 8, a rapid immunochromatographic assay for the qualitative detection of influenza A or B was performed on nasopharyngeal secretions and was positive for influenza A. A sputum culture obtained the same day grew MRSA; blood cultures were negative. The patient had leukopenia [a decreased number of white blood cells] and worsening hypotension (abnormally low blood pressure) and hypoxia [a shortage of oxygen in the body]. He died on December 9, approximately 42 hours after admission to the PICU. The cause of death was reported as bilateral pneumonia [in both lungs]. The patient had no documented history of MRSA; no documentation of influenza vaccination was present in either his medical record or the statewide immunization database, Louisiana Immunization Network for Kids Statewide (LINKS).

The CDC reported nine other similar cases in Lousiana and Georgia in December 2006 and January 2007. In six of them, the patient died. None had received a flu vaccine.

Advice: Write yourself a note on your calendar for the first Monday in November: Get yourselves vaccinated against the flu.

Read another flu story, or read CDC’s source story.

He saw God: A Painkiller Drug Overdose

Bradley Weafer, a 38-year old former social worker, received an overdose of ketamine, which is also used as an anesthetic, after undergoing back surgery in Vancouver, in Canada’s British Columbia.

He was supposed to get three milliliters an hour of the drug. Instead he got the whole 500-milliliter bag in five minutes. When the nurse went back to check on him after setting up an intravenous drip, she found him unresponsive and making jerky motions.

In court, Bradley recalled being sucked into black tunnels. It was hot and scary, he said, adding he saw his life flash before him, felt being born and placed in his mother's arms. He also said he saw God. He also testified he had suffered brain damage, and a psychiatrist and other witnesses supported his claim.

Now, six years later, the judge has ordered the health system to pay $63,000 in damages to Bradley for psychological trauma and damages.

Advice to patients on IV medications: Ask the nurse, or have your advocate ask the nurse, to verify and explain the pump settings for intravenous medications.

Read another overdose lawsuit story, or read CBC News’ source story.

Stories from the Help Line: Universal health insurance

From the files of HealthCare for All’s Help Line:

I have a cataract in my left eye and I'm losing my vision because it needs to be removed. I've been uninsured for four years and I couldn't afford surgery or health insurance. I feel absolutely thrilled that I now have health insurance that will cover this! You have no idea how incredible this is. - New Commonwealth Care Enrollee Joanne

I haven't had health insurance in years. Last time was probably fifteen years ago when the place that I worked closed down. I still owe my doctor for things he has done throughout the years. They just told me I have high blood pressure, and I haven't been taking the pills because they are too expensive. The first set of pills is like $20 every couple of weeks. I can get those now. - New Commonwealth Care Enrollee Irene

I've been going without coverage for probably five to ten years. I was told that I have a cyst on my kidney, but that was over a year ago. They said to check back with them when I have health insurance. I'm definitely going to get that checked out now. - New Commonwealth Care Enrollee Kevin

I have severe medical conditions and I have had no insurance for about a year. I have really bad asthma attacks and I let myself get really, really sick because I didn't have health insurance. I've had to go down to the hospital and it's a lot of bills. I feel wonderful relief [because of her new insurance coverage]! - New Commonwealth Care Enrollee Joan

This is a weight off of my shoulders! I can get this hammer nail on my feet taken care of. It hurts me to walk. I wanted to take care of it before, but I just can't afford it. I went to this clinic and they just cut the toenail, but it grew back weird again. I'm a security guard and I do a lot of walking and my feet hurt very badly. I'm going to get it taken care of now. - New Commonwealth Care Enrollee Arthur


I have let a number of things slide while I've been uninsured the past 3 years. I haven't had any physicals or treatment for my diverticulitis. There just hasn't been the money to get the appropriate stuff done to help with this. My first plan [now that he is covered] is to have a complete physical examination so that I can have the proper treatment for my conditions. - New Commonwealth Care Enrollee Timothy

Having health insurance would make the greatest difference in the world. I have diabetes and really need yearly MRIs and my testing supplies covered. I haven't had any of these things for close to a year. - New Commonwealth Care Enrollee Allison


Universal health insurance in Massachusetts is the creature of many fathers and mothers. At today’s press conference/birthday party in Boston, I was privileged to see many of them. To name and thank a partial list of at least the people I know: Ashley Adams, Cheri Andes, Larry Gordon, Rev. Hurman Hamilton, Nechama Katz, Leslie Kirwan, Ari Lipman, John McDonough, Nahma Nadich, Rabbi Barbara Penzner, Brian Rosman, and Lisa Vinikoor. Bravo!

Advice to people living outside Massachusetts: Organize a coalition like theirs.

Happy First Birthday, Universal Health Insurance: CHICA Bonita!

On April 12 last year, Massachusetts enacted an ambitious law to expand health coverage to most of the state’s 500,000 uninsured residents. Now, a year later, more than 110,000 formerly uninsured residents have coverage. MassHealth, the Medicaid provider, expanded to cover 50,000 of them, and 63,000 get coverage through the Commonwealth Health Insurance Connector Authority (CHICA). Another 100,000 eligible people have not yet enrolled.

Read today’s Boston Globe column by John McDonough--a proud father, who may be sleepless over his baby’s normal growing pains about affordability. And give him a cigar—a chocolate one…

P.S. Its dental coverage for newly insured people under the federal poverty line is quietly saving the lives of homeless kids like Deamonte Driver, may he rest in peace.

Advice to Americans outside of Massachusetts: Read how Massachusetts is handling this - and start watering your grassroots organizations—it’s Spring.

I’m sure they have some record: A laboratory medical error

The last time she saw her father - a soft-spoken man who "always had a joke for everyone" - was when she visited her parents' home in Florida for Christmas. "He was great," Jeanne Zeller said. "He even carried my luggage for me."

Around a week later, though, Thomas Zeller started to have shoulder pain. After enduring it for a week, the 69-year old man checked into the hospital, on Jan. 8, 2006. His initial vital signs were normal and his chief complaints were left shoulder pain and right hand swelling. X-rays of Zeller's left shoulder showed a slight dislocation of bone. On his first day in the hospital, he was given a Foley catheter to help with urine retention.

Thomas' temperature spiked to 102 degrees during the late evening of Jan. 11, and a blood culture was taken the next day. Meanwhile a cardiac catheterization on Jan. 11 had suggested dysfunction of the heart muscle (cardiomyopathy). Though the condition was serious, it didn't warrant his staying in the hospital any longer, and he was discharged to a nursing home on Jan. 14.

Thomas’ fever continued to spike during the next week, while he was having rehabilitative physical therapy in the nursing home. At the end of that week, he was transferred back to the hospital, on Jan. 20. There, the blood and urine cultures revealed Pseudomonas aeruginosa, a "superbug" resistant to most antibiotics. From there, his condition deteriorated, as the infection spread to his heart valves. On Feb. 15, Zeller's wife signed the "do not resuscitate" order, and he died soon afterward.

The superbug had spread, unknown and untreated, for a week, because the Jan. 12 blood culture result was delayed or missing until after he left the hospital. "By not having important lab results in the chart in a timely manner," Jeanne Zeller wrote to the Florida Agency for Health Care Administration, the hospital "sentenced my father to death."

The most likely explanation: "Persistent Pseudomonas aeruginosa bacteremia blood poisoning probably started off as a urinary tract infection," Dr. Murali Puthisigamani wrote after examining Thomas on Jan. 30.

The hospital had made at least three errors. First, unsanitary conditions were surprisingly prevalent. Three of nine patients sampled by AHCA "were not provided catheter care and/or personal hygiene care," according to AHCA’s report. Second, the initial lab result was delayed. Third, when the critical result was determined, staff told no one. Apparently the hospital had no effective system in place to immediately sound an alarm to doctors when laboratory staff learn of such critical lab results (also called "panic values").

The AHCA inspector had asked the infection control nurse why Thomas Zeller's Jan. 12 blood culture never made it to his chart. Her response: "If a patient left before the final results were in, they may be - I don't know how medical records does their filing. I'm sure they have some record."

Advice: Before you let your father into a hospital, ensure that the hospital participates in the Five Million Lives campaign of the Institute for Healthcare Improvement.

Read a story on misplaced lab results, or read Elena Lesley’s source story, dated April 1, 2007.

We demanded another X-ray: A medical misdiagnosis error

Before her fall last May 24, the mother of five was an active woman, who visited the supermarket once a week and regularly walked round Leyland Market in the United Kingdom with her husband.

The fall left her bedridden and in severe pain, and the pain led her to a hospital’s Emergency Room. There, staff gave her an X-ray and then told 84-year old Sarah Jackson there had been no fracture to her leg.

But her daughter in law was firm: "We demanded another X-ray," three weeks later. Doctors then found a break, and transferred her to a hospital that could perform a hip replacement. The operation took place on June 19. She died on July 8 after the wound became infected and she developed a blood infection (septicemia).

Now a court is holding an inquest about why her broken hip was undiagnosed for three weeks.

Advice for patients and advocates: Remember that the interpretation of X-rays is very subjective. Insist on an independent reading if you suspect the radiologist X-ray reader missed seeing a fracture.

Read another hip fracture misdiagnosis story, or read the source story.

He stopped strangers in the mall: Overdose lawsuits from misdiagnosis

Steven Ridley, a 45-year old husband and father of three in Napavine, Ohio, was suffering from back pain, so he saw his doctor. The doctor said his pain was due to a complication of rheumatic fever, and prescribed methadone, in a dose more than five times higher than recommended. Steven took the medicine, and died three days later.

His doctor believed there was an “epidemic” of undiagnosed patients in the county. Other doctors and state officials discounted this controversial theory. But the doctor persisted in believing it, and he even sometimes stopped strangers in the mall who had the red face he included in his diagnosis. His treatment was to prescribe strong narcotics, often methadone.

The state suspended his license to practice medicine. This was his sixteenth and final lawsuit, for up to 16 deaths of patients in his care.

Advice: If diagnosed with a rare disease, learn all you can about it, so you can ask intelligent skeptical questions.

Read another misdiagnosis story, or read Barbara LeBoe’s source story.

Sorry, you didn’t have cancer: A misdiagnosis story

Suffering from chest pain and difficulty breathing, Muriel Lavallee went to the hospital, and was sent to another hospital. There, doctors drew fluid from around her heart, which the pathologist reported was cancerous. Doctors immediately began chemotherapy, in November 2004. Over the next four months, she was hospitalized five times, spending 42 days in the hospital, with various infections, weakness, and outbreaks of the C. difficile bacterium. She became so ill that the doctor decided to stop the chemotherapy.

A week later, she was shocked to hear, "Sorry, you didn’t have cancer. You can go home now."

Then 59, she had lost her hair, and a sense of feeling in her hands and legs. Muriel is still suffering the loss of feeling, which prevents her from returning to her job at WalMart. She is seeking $155,000 from the Quebec Superior Court, which is scheduled to hear her lawsuit in July.

Advice to chemo patients: Ask the doctor the false positive rate of the test that showed you have cancer, and consider asking for an independent retest.

Read a cancer advocacy story, or read Dene Moore’s source story in the Toronto Star.

I didn't actually read it: Wrong site surgical error

Benjamin Houghton had much to be happy about. He was a father of four. He had survived metastatic testicular cancer, having received chemotherapy in 1989. He knew he could function normally with a single healthy testicle.

While there was no sign of the cancer’s recurrence, his left testicle was atrophied and painful, and there was a chance that it could harbor cancer cells, so he had surgery,, though it was not urgent. Surgeons mistakenly removed his healthy right testicle instead of the left, according to his lawsuit.

On the day of his surgery, the consent form stated that his right one should be removed, and a vasectomy performed on the left, when it should have read exactly the opposite. Benjamin didn’t have his glasses on. He explained, "The surgeon said, 'This is what we talked about before. Just sign here and here.' I didn’t actually read it." Benjamin, an Air Force veteran, did as the doctor ordered.

Lacking the testosterone from the healthy testicle, he may have future complications like sexual dysfunction, depression, fatigue, weight gain, and osteoporosis. He is suing for $200,000 for future healthcare costs and damages, hoping to get the healthcare system's attention, according to Attorney Susan Friery, MD.

Advice to surgical patients: Read the consent form carefully.

Read another veteran’s story, or read Mary Engel’s source story in the L.A. Times.

Familiarity breeds conclusions: Misdiagnosis of a rare disease

A Boston couple adopted a Vietnamese baby girl, Shira Stein (a pseudonym). Before leaving Vietnam, Shira was coughing. On landing, she seemed dehydrated, but refused to drink. Her new parents brought her to a Harvard teaching hospital the next day, where she was admitted to the intensive care unit (ICU) with severe pneumonia. Doctors found five potentially lethal different infections, which implied an immune system deficiency. The doctors concluded she had severe combined immunodeficiency disorder (SCID)—an inherited condition that is extremely rare in girls.

Doctors at the hospital were very familiar with SCID and similar genetic abnormalities. But Shira’s mother thought otherwise. Week after week, she remained certain that Shira would live. The doctors suggested a bone marrow transplant. Shira’s mother conducted her own research into SCID, and doubted the doctors’ diagnosis. Instead, she suspected that Shira had a nutritional deficiency. Though immune tests had shown Shira had few T cells, her mother insisted that doctors retest her. Shira’s T cells were normal; she did not have SCID. The bone marrow transplant might well have killed her.

Advice to patient advocates: Respectfully ask the doctor what other diagnosis might account for the symptoms.

Read another misdiagnosis story, or read the source: Dr. Jerome Groopman’s new book, How Doctors Think, as reviewed by Michael Crichton in Sunday’s NY Times Book Review.

My dog has a better medical record than you do: Electronic medical record

My dog Jackson had a well-dog checkup recently with his veterinarian.

A month earlier, we had received a postcard reminding us that he needed certain vaccinations and was due for a yearly checkup. (Does your doctor’s office remind you?) When I phoned the office to make an appointment, they asked me my last name, and looked up his record on the computer so they could verify for me which shots he would need, and what the purpose of the visit would be. (Would your doctor’s office do that?) Knowing he’d need a fecal test, they suggested I bring in a (poop) sample, and gave the necessary instructions. They entered the information into their computer scheduling program.

At the visit, much of the equipment was not much better than that of a doctor’s office: a stethoscope to listen to his heart, a thermometer to measure his body temperature, a digital scale built into the floor, a pair of highly trained hands and eyes for the physical exam.

At the end of the visit, the vet handed me an individualized, four-page, neatly formatted and typed summary of what he had found, for each bodily system, with his advice on diet, exercise, and hygiene, a thumbnail photo of Jackson, lab test results and their interpretation, and target dates and types of future vaccinations. (Does your doctor routinely do that?) At check-out, I also received a receipt and itemized bill, which clearly named on an 8.5 x 11 inch sheet each shot and service Jackson had received, and showed the name of the receptionist, phone number, and future vaccine and exam dates, to keep for our records. (Does your doctor do that?)

They even advised on the preferred flavor of the toothpaste for daily brushing: poultry. The care was Mmm-Mmmmmm good!

Advice for people searching for a doctor: Find a doctor who uses an Electronic Medical Record to educate patients and themselves about the care you need.

Read another story about an electronic medical record.

What chemo dose should my 150-pound Golden Retriever take?: An adverse drug reaction story

Dr. Lawrence Burgh has a sober outlook on life. A 48-year-old physician whose career has centered on treating seriously ill patients, he himself was diagnosed with cancer in December 2006. He has begun dosing himself with DCA, a simple laboratory chemical that has never before been used to treat cancer in people.

Last month, he learned the cancer in his thigh had spread to his lungs. "My prognosis is very poor," he says. "Standard chemotherapy would give me only a slim chance of survival at five years." So he turned to DCA, after reading about the promising lab experiments in New Scientist (20 January, p 13).

But Lawrence (a pseudonym) has yet to see DCA make any impact on his cancer. Medical scans on 19 March showed that the primary tumour in his thigh has shrunk, and is less active, but this may be due to the delayed effects of radiotherapy and chemotherapy Burgh had in January. The number of metastatic tumors in his lungs has not changed since last month, and they are larger and more active. "These results are very preliminary," he stresses, "but I was really hoping for better results." On 21 March, he stopped taking the drug after noticing symptoms which by 24 March included a numbness in his hands, which he believes to be a sign of a disease of the nervous system (neuropathy), and a hypoglycemic attack. He advises other people with cancer not to self-medicate with DCA except under medical supervision. "I am concerned others may try this drug on their own in desperation," he says. "DCA is chemotherapy, a serious drug with potentially serious side effects."

DCA is not patentable as a medication, so there is no incentive for pharmaceutical companies to run the clinical trials necessary to make DCA legal as a cancer treatment. So two Web sites sprang up: one with research papers and chat rooms to discuss DCA, and another site selling DCA supposedly for use in pets with terminal cancer. Both sites are run by a California man who operates a pest-control company. The FDA is investigating both web sites because DCA hasn't gone through clinical trials or been approved for human use. Even marketing DCA for pets is illegal. Even so, researchers have been getting emails from people asking for dosage information for, say, a 150-pound "Golden Retriever."

Advice to patients with advanced cancer: Read Linda Geddes’ article in the New Scientist, the research, and the web site of the Abigail Alliance, which advocates faster drug development for critically ill patients, then discuss it with your oncologist.

Read another chemo story.

Thanks to April Rabkin of Mother Jones for summarizing the New Scientist article.

April First: New Drugs for Men

With Viagra such a great medical success for increasing men's sexual prowess, Pfizer is bringing forth a whole line of drugs oriented towards improving the performance of men in today's society.. Here are a few of the new ones:


DIRECTRA - a dose of this drug given to men before leaving on car trips caused 72% of them to stop and ask directions when they got lost, compared to a control group of 0.2%.

CHILDAGRA - Men taking this drug reported a sudden, overwhelming urge to perform more child-care tasks especially cleaning up spills and "little accidents".

PROJECTRA - Men given this experimental new drug were far more likely to actually finish a household repair project before starting a new one.

COMPLIMENTRA - In clinical trials, 82% of middle-aged men administered this drug noticed that their wives had a new hairstyle. Currently being tested to see if its effects extend to noticing new clothing.

BUYAGRA - Married and otherwise attached men reported a sudden urge to buy their sweeties expensive jewelry and gifts after talking this drug for only two days. Still to be seen: whether the drug can be continued for a period longer than your favorite store's return limit.

NEGA-SPORTAGRA - This drug had the strange effect of making men want to turn off televised sports and actually converse with other family members.

FLYAGRA - This drug has been showing great promise in treating men with O.F.D. (Open Fly Disorder). Especially useful for men on Viagra.

PRYAGRA - About to fail its clinical trial, this drug gave men in the test group an irresistible urge to dig into the personal affairs of other people. Note: Apparent overdose turned three test subjects into "special prosecutors."

LIAGRA - This drug causes men to be less than truthful when being asked about their sexual affairs. Will be available in Regular, Grand Jury and Presidential Strength versions.

Advice: Laughter is the best medicine.

See another joke, or read more at the source.