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Thursday, May 31, 2007

She received a bouquet of flowers: Veterans Administration Transitional Patient Advocate

Eric Kundert joined the Army in 2003 while still in his senior year of high school. His second tour of duty in Iraq was from January 2005 to August 2005 as a scout, during which time he was severely injured. The sniper shot entered the right side of Eric’s jaw just below the ear drum and exited out the left side. Both mandibles were fractured and his jaw was wired shut for about three weeks. He suffered significant hearing loss in both ears from nerve damage as well as traumatic brain injury, where he still has three contusions on the brain. It will take up to three years for them to heal.

He was initially treated in Baghdad, then was transferred to Landstuhl, Germany, and in September 2005 was sent to Walter Reed for over a year and a half of hospitalization. There he conducted intensive physical therapy to regain balance due to the hearing loss and residual effects of the brain trauma. He continues to have ear problems with fluid buildup and wears a hearing aid, which provides some hearing in his right ear. He has anxiety problems and difficulty sleeping.

Jeanne Button became Eric’s Transitional Patient Advocate as he finished the clearing process from the hospital on May 4, 2007. Jeanne was the first VA Transitional Patient Advocate to enter Walter Reed Medical Center. Now upon return, every combat vet is supposed to receive a point-of-contact person and case manager. Serious mentally or physically ill patients should also receive a Transitional Patient Advocate like Jeanne, to help them with the transition to civilian life. All soldiers apply for VA status and receive a physical and mental health assessment. They are discharged between 90-120 days after their return. Eric was officially medically retired from the Army on May 24.

"We treat first and sort out the other things later. If they’re calling us, we’re going to get them in," said Jeanne. "We assess the severity of the individual and try to help them as quickly as possible."

Because of Eric’s hearing loss and anxiety, she was especially helpful in the process, she said. "I was glad that I could be there with him, not only to learn the process, but to assist him through it. And I could tell that having a patient advocate with him made a difference on how he was treated."

Upon Eric’s homecoming to Broadhead, Wisconsin, Jeanne received a bouquet of flowers for her efforts.

Advice to returning veterans:
Get an experienced patient advocate, even if it’s late in your recovery. Any veteran in need of assistance can call Jeanne Button, who works for the Veterans Health Administration, at 1-800-872-8662 ext. 61287 for guidance, support or services.

Read another of our returning veteran’s stories, or read Keith Zukas’ source story.

Wednesday, May 30, 2007

He’s turning his disease into a business plan: ALS patient advocacy

He was a platoon leader in the Israeli army, and later was accepted to Harvard Business School. Then came an odd tremor in his right forearm. It persisted, and once in Boston, he was diagnosed with ALS. Now, almost three years after his diagnosis of ALS (Lou Gehrig’s Disease, amytotrophic lateral sclerosis), his wheelchair has a Borat sticker.

"Avi moved very quickly from the anger stage after diagnosis to a very applied, entrepreneurial stage when he said, 'Let’s get on with it. Let’s find the solution. Let’s put the resources on the table to empower research,'" said his neurologist, Dr. Robert Brown of Mass General Hospital. He raised money with a guarantee to donors: If there’s no solution to the problem, they would get their money back. With the help of friends from the business school and neurologists, Avi started a scientific competition called Prize4Life. Scientists will win prize money only after solving crucial questions about ALS that could speed the discovery of drugs to slow the disease. The first question, with a $1 million prize and deadline in November 2008, asks researchers to identify markers of the disease’s progression. So far, Prize4Life’s scientific advisors have selected the five winners of small cash awards in the first round.

Learn more at Prize4Life.

Read another of our hero stories, or read Stephen Smith’s source story in Monday’s Boston Globe.

Tuesday, May 29, 2007

She told the EMTs to take her an hour away: Stroke and tPA

Dr. Diana Fite, a 52-year-old emergency medicine doctor in Houston, knew her blood pressure had been dangerously high for five years. But she convinced herself her actual blood pressure was lower and healthier. And she thought she was too young to take medicine; she would worry about high blood pressure when she got older.

Then, one morning while driving, her whole right side felt weak. She "had no strength whatever in the hand that was holding the wheel. And my right foot was dead. I could not get it off the gas pedal," she recalled. She grabbed the steering wheel with her left hand, and steered into a parking lot. Then she used her left foot to pry her right foot off the gas pedal. She called 911, and spoke with great difficulty. She told the ambulance crew to take her to a hospital an hour away, to a stroke center whose doctors had experience with diagnosing stroke and giving the medicine tPA within the essential three-hour window for it to be effective.

The tPA started to immediately dissolve the blood clot that had caused her stroke. "I had weird spasms as nerves started to work again. An arm would draw up real quick, a leg would tighten up. It hurt so bad I was crying because of the pain. But it was movement, and I knew something was going on," she said.

Now she has completely recovered. She looks back with dismay on her cavalier attitude toward high blood pressure. Now she takes three blood pressure pills, a drug to prevent blood clots and a cholesterol-lowering drug, and plans do so daily for the rest of her life.

"Boy, when you go through this, you never want to go through it again. I have been given that precious second chance. I was so blessed."

She was also blessed in being among the 3 – 4% of stroke victims who receive tPA when they should. Many victims wait too long to report their symptoms, and many hospital Emergency Room doctors don’t always diagnose stroke accurately.

Advice: Send this to your friends with high blood pressure.

Read another of our healthy heart stories, or read Gina Kolata’s source story in yesterday’s New York Times.

Monday, May 28, 2007

I wish I had been more demanding: Misdiagnosed heart attack

A North Texas woman said she is lucky to be alive after surviving a massive heart attack.

Gretchen Minchew, 56, drew the attention of cardiologists who said her condition might have gone unnoticed because she is a woman. The hospital’s director of cardiology said she could have been misdiagnosed based on a stress test.

Gretchen had taken a typical stress test that puts the patient on a treadmill while doctors monitor the heart. She said she passed the stress test, but doctors said they thought it was a pinched nerve in her arm.

"The stress test is notoriously not accurate in women," Dr. Michael Rothkopf said. "It's maybe 50% accurate. With imaging, it may have been more accurate and would have shown the problem."

"I wish I had been more demanding," Gretchen said. "I wish I had said, 'I think it's more than that.'"

She said she hopes her experience will educate more women with similar symptoms – severe numbness in her arm.

Doctors said heart disease is the No. 1 killer in women. Only 30% of women experience chest pain.

Advice for women: If you suspect your true diagnosis is more severe than what your doctor thinks, ask what else it could be.

Read another of our women’s heart health stories, or read NBC’s source story.

Saturday, May 26, 2007

It took 17 days for the lab results: An adverse drug reaction

A grandmother died from liver failure after an adverse reaction to a drug, an inquest ruled today.

Sheila Gunn, age 69, died less than seven months after being prescribed Aulin, which contains Nimesulide. The medication was recently ordered off the shelves by the Irish Medicines Board.

Three other people are believed to have died from liver failure after taking the drug, with six others needing liver transplants.

Sheila had been diagnosed with osteoarthritis in July 2003 at a Dublin hospital. She was first prescribed the maximum recommended dose of Aulin - 100mgs twice a day - by her general practitioner and had collected six repeat prescriptions. Seven months later, at another hospital, a routine blood test showed significant liver function abnormalities; it took 17 days for the lab to return the results to the clinic.

She was later moved to another hospital where she was diagnosed as suffering from an adverse reaction from Aulin. She was transferred to the intensive care unit, and died there five days later.

Her daughter, Marcia O'Hara, welcomed the ruling by the Dublin City Coroner, saying she hoped her mother's death would prevent another person from losing their life to the drug.

Make sure you get your lab results back promptly.

Read another of our stories about delayed lab results, or read the Irish Times’ source story.

Friday, May 25, 2007

First thing in the morning: A Hero Mom and a leukemia drug overdose

Her four year old son Michael had just been diagnosed with leukemia. After he spent five days in the hospital, his mother brought Michael Koster home and filled two prescriptions for him.

That night, as Pam prepared to give Michael his first doses of the medications, she read the directions from the bottles and thought something was odd, she told ABC News.

"I said, 'This doesn't seem right,'" Pam said she recalled. Checking with the local children's hospital, she says her fear was confirmed: the pharmacy had mixed up the instructions on Michael's medications, advising Pam to give her son a much larger dosage of a powerful drug, Dexamethasone, than the hospital had directed and to give him much less of a second drug, Methotrexate, which was key to curing his leukemia.

"I went to Walgreens the next day, first thing in the morning," Pam told ABC News. "The pharmacist who filled the prescription was there. I asked to talk to him specifically. I showed him the labels and said, 'This isn't right. I want you to pull what the hospital called in and show me what you did.'"

The pharmacist said he did not have the paperwork handy but would look into the matter. At first she resisted, Pam said, but eventually gave in after being promised the store would call her later that day with more information. The pharmacist's supervisor called her that afternoon, Pam told ABC News. Pam says she admitted the error and vowed to bring it up at the store's next staff meeting.

In fact, as Dr. Marlene Miller at Johns Hopkins Children Center in Baltimore reported today, children with cancer often get the wrong dose of chemotherapy or are given the drug at the wrong time, and many require treatment because of the errors. She and her colleagues studied 800,000 errors, of which 310 involved kids on chemotherapy. Of those mistakes, 85% reached the patient, and one sixth of those were serious enough to require additional care.

Advice to parents of children getting prescriptions: Check the label carefully, and if you find an error, show up and tell them so.

Read another of our children’s overdose stories, or read the source story by ABC’s Brian Ross and Justin Rood.

Thanks, Kim Slack and Joe Brownstein.

Thursday, May 24, 2007

Three days later, he was fine: Adverse Drug Reaction - Avandia

[Translation appears below]
A 70-year-old man with hypertension and chronic renal insufficiency presented with dyspnea, orthopnea, and paroxysmal nocturnal dyspnea. Metformin had been replaced with rosiglitazone, 4 mg/d, 1 month previously. The patient had no history of congestive heart failure. Physical examination revealed tachypnea and bilateral lower extremity edema. Chest radiography showed cardiomegaly with bilateral basilar infiltrates. Transthoracic echocardiography revealed left ventricular hypertrophy and diastolic dysfunction but normal LVEF. The serum digoxin level was slightly increased at 2.3 ng/mL. Serum creatinine values did not change. Rosiglitazone was discontinued, and intravenous furosemide was administered. Metoprolol, digoxin, minoxidil, and verapamil were replaced with losartan and felodipine. After 3 days, the patient was asymptomatic.

Translation: A 70-year-old man with high blood pressure and bad kidneys came to the hospital because he had a distinctive kind of rapid and labored breathing. Examination and test results showed he had an enlarged heart, and feet swollen with fluid. He had started taking Avandia a month earlier. Though he had no congestive heart failure before the Avandia, it looked like he was getting it, or another serious heart problem. In the hospital, doctors took him off Avandia. Three days later, he was fine.

He was one of millions of patients taking the highly profitable drug.

Two days ago, researchers published an article in the prestigious New England Journal of Medicine that reviewed 40 earlier studies on the subject, and discovered that users of Avandia (thiazolidinedione) got 40% more heart attacks than other diabetic patients who were not taking it.

In one of these studies, quoted above, Dr. Asra Kermani and his co-authors “conclude that thiazolidinediones can cause pulmonary edema or exacerbate heart failure. Thiazolidinediones should be used with caution or avoided in patients with left ventricular dysfunction or chronic renal insufficiency.”

Advice to people with diabetes: Discuss with your doctor what to do. There may well be alternative drugs, not to mention other alternatives like exercise, diet, etc.

Read another of our adverse drug reaction stories, or read Stephanie Saul’s story in Tuesday’s New York Times.

Wednesday, May 23, 2007

Eventually a national template: A cancer survivor’s philanthropy

Robert Sillerman, a media entrepreneur, was treated at Sloan-Kettering six years ago for tongue cancer. He received chemotherapy and radiation, and later began to suffer pain and muscle spasms in his shoulders and back, as well as increasing weakness in his left arm.

"I was two years out from my cure before I was able to find the right protocol and treatment," he says. "Our hope is to eliminate that and provide access to rehabilitation right away, initially in the New York metropolitan area and eventually to make that a template nationally." He has made a sizeable donation to Sloan-Kettering for an off-campus outpatient center devoted to physical rehabilitation for cancer survivors.

Today, he has reversed the damage from chemotherapy and radiation with a little medication and a lot of physical therapy. He exercises six days a week with weights, bands and manual resistance, partly with a personal physical therapist, whom he puts up in a Manhattan townhouse near his own.

There are now ten million cancer survivors! A medical specialty called survivorship has arisen. At several major hospitals in the U.S., the Lance Armstrong Foundation finances survivor programs to improve life after cancer.

Advice to cancer survivors: Consider physical therapy to help you fully recover.

Read another of our cancer survivor stories, or read Leslie Berger’s source story in yesterday’s New York Times, “Cancer Care Seeks to Take Patients beyond Survival.”

Tuesday, May 22, 2007

I can make this devil work for me: A doctor lives with bladder cancer

Dr. Richard Waltman’s story about his own cancer:

Yes, the tumor was there, and yes, I needed a second trip to the O.R., but the procedures went well, the catheter eventually came out, and the BCG treatments [which use something originally developed as a tuberculosis vaccine] have been relatively easy. Most of the time I feel so good that I don't think about my illness. Then it reminds me, sometimes loudly, "This is your bladder cancer speaking; I'm still here."

"No, you're gone," I answer. "The last cystoscopy looked great, and the BCG treatments will keep you away."

"Okay for now," it responds, "but I'll be back." And, you know, it's probably right.

In tournament play, professional soccer features something called "extra time"—an additional 30 minutes in the event of a tie after regulation time. It's the game's way of saying, "We'll give you a little more time. Take advantage of it."

In a way, this is my "extra time," and I have every intention of using it to do what I love most: being with my wife and sons and taking care of my patients. Only I plan to do these things better and enjoy them more.

I've been in practice for 23 years, and my experience as a cancer patient has taught me a few things, and confirmed things I suspected all along.

I can make this devil work for me. I haven't made any formal announcement of my illness at work, but neither have I kept it a secret. I've even told a few patients. One woman, for example, was ready to stop chemotherapy for breast cancer. "What's the use?" she asked me. I told her of my malignancy and treatments. We do it, I told her, because there are people who don't want to lose us, and because we're not ready to lose them. We made a deal: We'd both continue treatment, and we'd both get better.

Advice to cancer patients: Find ways to “make this devil work for you.”

Read another of our cancer survivor stories, or read Dr. Waltman’s source story. Thank you, Helen Haskell.

Monday, May 21, 2007

My funny bone fell out: The Fonz and undiagnosed dyslexia

He says he doesn’t blog, because he can’t spell. But he did send email for the first time, in desperation. It takes him about two and a half months to write a children’s book.

Life has changed a lot for 61-year old Henry Winkler, who played The Fonz in the long-running TV show, "Happy Days."

He’s now on a book tour for his 11th children’s book in a series about the fourth-grade boy "Hank Zipzer," who is based loosely on his own childhood, growing up with undiagnosed dyslexia. He calls Hank "the world’s greatest underachiever," mirroring his own struggles as a student.

At Hank’s age, Henry still could not read. With Hank, "the emotion is real; the frustration and arguments are real. The humor is exaggerated," he says. A young fan in Missouri wrote that he laughed so hard at Hank’s adventures that "my funny bone fell out of my body!"

Henry overcame his learning differences and received a Master of Fine Arts from the Yale School of Drama before his 11-year run on Happy Days. He is also a founding member of the Children’s Action Network, a nonprofit that sponsors briefings for writers, producers and directors on children’s issues.

Henry says becoming an actor was the only way he could express himself "because I wasn’t confident enough to express myself through other methods." He is grateful that "every day, some sort of my dream comes through, in the way of writing, producing or directing. A lesson for my readers is that there is no limit to what they can do. They may believe that they’re stupid, that they’re limited. But really, it’s just that they learn differently. I want them to know their dreams aren’t impossible."

Advice to people with dyslexia: If you will it, it is no dream.

Read another of our celebrity patient advocate stories, or read
Susan Kalan’s source story

Sunday, May 20, 2007

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.

Saturday, May 19, 2007

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.

Friday, May 18, 2007

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.]

Thursday, May 17, 2007

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.

Wednesday, May 16, 2007

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.

Tuesday, May 15, 2007

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.

Monday, May 14, 2007

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.

Sunday, May 13, 2007

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”.

Saturday, May 12, 2007

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.

Friday, May 11, 2007

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.

Thursday, May 10, 2007

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.

Wednesday, May 9, 2007

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.

Tuesday, May 8, 2007

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.

Monday, May 7, 2007

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.

Saturday, May 5, 2007

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.

Friday, May 4, 2007

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.

Thursday, May 3, 2007

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.

Wednesday, May 2, 2007

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.

Tuesday, May 1, 2007

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.