Tag Archives: patients

Hemophilia Heroes: Inspirational Patients

David and Peter Witbeck faced life-threatening illness, painful procedures and discrimination, but left a lasting legacy in their community

The shocking discovery of hemophilia in David Witbeck followed circumcision in 1975. His mother, Carmelita, practiced inserting a needle into a ripe orange to acquire the necessary skill to infuse him intravenously with medicine to treat his recurrent bleeding episodes. A brother, Peter, was born three years later in 1978 who also had hemophilia.

Carmelita brought her two  young sons and their infant sister 200 miles to our clinic on a greyhound bus, to learn how to care for them in the small logging town in the mountains where they lived in a little house with a dirt driveway. The painful repeated bleeding episodes were relieved by their mother’s infusions of medicine. The mother sold her piano to help pay for medical expenses.

In 1985, when the brothers were ages ten and seven, tests revealed that they had become infected with HIV from the medicine they had received. To be closer to a hospital where they could receive medical care, the family moved from the mountains into a larger town. However, their admission to the public school was opposed by the parents of other school children because of the fear of AIDS. To avoid stressful confrontation, the brothers and their family returned to their mountain community where they previously lived.

The two brothers died of AIDS, one day apart, the day after Christmas in 1992. David was seventeen; Peter was fourteen.

Their lives had a profound effect on their community.  Despite their many days of pain and illness, they never complained–although they suffered from two life-threatening medical burdens, hemophilia and AIDS. Their lives were a message of the importance of love.  The local newspaper and the little town where they lived in the mountains proclaimed them as heroes.

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When patients die, who’s to blame?

I was a farm boy from Iowa. While I was serving in Korea as a rifleman, I realized that I was eligible for the G.I. Bill, and decided that I would become a doctor.

After completing medical training, I was assigned as a temporary substitute for another doctor in a clinic that provided medical care for boys that had hemophilia.  The position developed into a full time appointment.

Hemophilia was a great medical disorder to treat as a physician.  The doctor could relieve suffering, prevent disability and prolong life with a new medicine that became available. It was like a magic medicine.  A guiding principle was to avoid causing harm to patients.

The magic new medicine unknowingly harbored lethal viruses: hepatitis and HIV. A new disease, AIDS emerged as aresult of infection from polluted medicine.   The patients that I treated developed liver disease, including cancer of the liver and AIDS. Ninety patients that I cared for died.

I felt devastated.  I felt guilty of causing harm. To the families they left behind to mourn, I had to say that I am sorry for causing harm.  The journey through the life of a boy I cared for from nine months of age–until he died at age 17 years–is recounted in Dr. Guilt?.  Some of the other persons he met are also described in this account.

When patients die, who's to blame?

Why I wrote this book:

AIDS could have been prevented in hemophilia. The families that lost a son or husband or brother or father blame the drug companies that made the medicine. They maintain that the drug companies sacrificed safety for profitability.  But the final responsibility of prescribing medicine rests with the doctor, not the drug company that made the medicine.

This book describes hemophilia, and the origin of AIDS. It discusses capitalism and free marketing in a society without cost controls.  Accountability for the deaths from AIDS is discussed.  It stresses the need for critical thinking and consideration for the hazards of medical treatment compared with the benefits. Sometimes when good events occur, bad things happen.

The impact of human activities is not always apparent at the time of their occurrence.   But most of all this book was written to tell the families that as a doctor, I and all the other doctors are sorry for causing harm.  We told the persons in this book to take the medicine and they would be relieved of suffering and live to become old men. Instead, they died from the medicine. If we were not guilty, we were certainly wrong.

After the patients died, I had bad dreams for several years.  I dreamed about those guys who died. Writing this book has helped me to overcome my sense of guilt.  But the persons who died were innocent.  Their story needs to be told so that they are not forgotten and the conditions that allowed this terrible tragedy to occur are never repeated.

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