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.

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.

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.

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.

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.

Advice: 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.

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.

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.

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.”

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.

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.

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.