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Bob Hanson died on December 19, 2003 at the age of 48. He leaves behind his wife Mary McGurran and three children – Isaac (17), Gabrielle (13) and Noah (8). His death was a result of bad medical judgement, a bureaucratic morass and an overwhelming profit motive. How does one recover from that?


History

After their marriage in 1983 – They had just celebrated their 20th anniversary when Bob died – Mary began attending St Joan’s. As a life-long Catholic, but married outside the Church (Bob had been married before), Mary was welcomed by the St. Joan’s commun-ity. When Isaac, the first born, came along, Bob, feeling the tug of parental obligation, no doubt, began attending Mass, though intermittently. But things become more complex for Bob when Isaac himself started going to Mass. “I said,” Mary said, ‘Honey, how does it look for the child, if only the mother goes to church?’” So Bob started going regularly. These things have a way of growing.

“Gee, Bob,” Mary said, “you should talk to Anna (Vagle). You have this great talent for the bass (guitar), which you don’t use enough.” That may be an understatement. Before Gabrielle, Bob had been a professional musician and actor. In any case, Bob quickly became involved with the music ministry and the choir. Mary’s involvement, in fact, was largely restricted to caring for the kids during Bob’s evenings at St Joan’s. So it goes.

Tragedy

In 2003 Bob needed heart surgery to replace a congenitally defective heart valve. He came through the surgery fine. After recovery in the hospital, he was sent home with a prescription to mend. But, becoming very ill after a week and a half at home, Bob was sent back to the hospital, where he died the next day. What happened? Nobody had any idea why Bob died at the time of the funeral at St Joan’s. Following surgery, he had had an atypical heart beat, but this is a common occurrence after heart surgery and not life threatening.

Months after the funeral, an autopsy determined that Bob had died of acute liver toxicity to the medication amiodarone (ah me oh dah rone). He was given this medication because of the minor heart irregularity (called an atrial fibrillation) that followed the surgery.

Mary: “I work with senior citizens (as a geriatric social worker), and so I understand medications and their side effects. The more one takes the greater the likelihood of side effects. I tried to winnow down every med that Bob was taking. Suspecting trouble, they finally took him off amiodarone two days before he died. But it was too late.” His liver had already been too badly damaged by the drug.

Controversy

Amiodarone has been approved for problems with the ventricles (large pumping chambers) of the heart, but not for fibrillation (quivering) of the atria (small chambers of the heart), which was Bob’s symptom. Doctor’s can, however, use a drug approved for one purpose, for a different purpose, at their discretion. This is called off-label prescription. In fact, 82% of the prescriptions for amiodarone are off-label. The problem is that amiodarone has a higher toxicity than other drugs which would work as well for atrial fibrillation. (The problem with the ventricles for which amiodarone is approved is much more serious.) So why wasn’t one of the drugs approved for atrial fibrillation used in Bob’s case? Or, why was any drug used at all, since the fibrillation, post-surgery, often resolves itself in hours or days?

Mary: “When Bob started having problems (at home), they told me amiodarone can be ‘difficult to tolerate.’ He was having vivid dreams, weakness and nausea. We called the hospital for days reporting these terrible symptoms. Finally, they stopped the amiodarone, saying it would take two months for the drug to clear his system. He only lived two days after he stopped taking it.”

So why was amiodarone prescribed for Bob? The story involves the FDA, the drug companies and the medical profession. The FDA had planned to issue an advisory on amiodarone, concerning its toxicity and off-label use, in October 2003. They asked Wyeth to write the advisory on December 19, 2003 (the day Bob died: Someone familiar with bureaucracies could explain, perhaps, why asking took two months). Wyeth took eight months to write the first draft of the advisory (ditto). An article on this issue, says that this all was happening fast by drug regulatory standards.

Apparently, the FDA has no sense of urgency to get advisories published, while the drug companies, for their part, are apparently only motivated not to get them published.

Mary: “According to an article in the New York Times, the FDA and the drug companies have a culture of cooperation, of being nice to each other. The FDA is not fulfilling its watchdog role, while the drug companies have no monetary incentive (quite the contrary, I should think) to inform the people of the dangers of their drugs. How things work in the drug world, is not ethical. Profit is number one. In fact, the FDA gets money from the drug companies to secure approval of a drug (quite legal: drug companies pay for the trials), but no money for monitoring once a drug is approved.”

To quote an article by Alison Young in the Knight Ridder Newspapers:

“…a class action lawsuit was filed in New Jersey that accuses the drug makers of promoting amiodarone for common heart ailments in an effort to boost profit. …patients and their families accuse the drug makers of a nearly 20-year scheme to push doctors to prescribe the drug for unapproved uses while concealing and downplaying the risks.”
In dealing with the hospital and providers on behalf of Bob, Mary notes, she got far less respect and consideration as a wife than she gets as a professional advocate (geriatric social work) for the elderly. It’s also more than interesting to note that a pharmacist wrote, in response to this tragedy, that pharmacists, in general, are very reluctant to question physicians’ prescriptions, knowing that they dislike having that done.

Recovery

Since the tragic death of Bob, Mary has become an advocate for consumer protection from amiodarone and other off-label prescription drugs. To summarize the kind of things she has been doing: “With the Vioxx scandal, the amiodarone tragedies and the controversy involving the use of antidepressants for children,” Mary said, “there is a convergence of different issues with regards to the appropriate marketing and use of pharmaceuticals that will bring change. Too many American consumers have had their lives placed at risk so pharma-ceutical companies can make money.”

“I really don’t have any anger,” Mary said. “I am just very sad and disappointed at the care that Bob received. And, looking at the bigger picture, I find it sad that profits and money are far more important than peoples’ lives.”

St Joan’s has been a help: Let Mary cover some of the highlights: “From the beginning, when Bob was sick, he had so much support from Anna, and from George and Jim (Frs. Wertin and Cassidy). When he died, George came that night. – The musicians and the choir, and everyone involved gave Bob the best send-off ever. It was spectacular. – Kathy Meyer donated bars to the funeral. – Mike Stackhaus took Isaac to a Viking game on Christmas eve. – Jim has been so good to mention Bob at Family Mass so the kids could hear that he is remembered. – The Cabaret Committee did a beautiful memorial. – Fred Vagle, who pays special attention to Noah, made a DVD of Bob’s cabaret performances. It is a precious thing.” And so on.

“The only way to get through something like this in one piece is by having the support of a community. We have been so blessed to be part of St Joan’s. It is such a tribute to Bob to have such an outpouring of love and affection after his death for his family and children…

“There is a core of Bob that continues in us. I have had such wonderful experiences since he died, that I know God gave him to me for a purpose. I can’t explain what I’ve learned about life-after-death from having someone so close to me die. There is a connection there that never ends…”

Pat O'Regan is a technical and business writer. He has been attending Mass at St Joan's for the past year and a half, finding a renewed and burgeoning commitment to his faith in the loving company of the St Joan's congregation. Pat hails from a small Minnesota farming community -- Montgomery -- and is a graduate of St Thomas University and the University of Minnesota. Pat can be reached at Patxtra@aol.com.
Indeed – She still talks to him.

To all of the many, many people at St. Joan of Arc who have helped the kids and I since Bob's death. We are so grateful for your thoughts, prayers and the many ways you have shown us God's love and kindness this past year. From Bob and from us, "Thank you".
Sincerely, Mary McGurran

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