The story behind the book

“Dying in Vein” is a documentary account of the effects of the blood crisis in the United States and of the crucial decisions made by pharmaceutical company executives, federal officials and others that had a devastating impact on innocent men, women and children.

Much of the factual data in this book was culled from research from the Centers for Disease Control and Prevention and documentation from a 1995 report by the Institute of Medicine, an independent investigation approved by Congress and overseen by the National Academy of Sciences.

A brief summary of the blood tragedy that occurred in the United States starts in the early 1970s, when four pharmaceutical companies began to market new plasma products, known as clotting factor, to treat and prevent bleeding injuries in people with hemophilia.

In the 1970s and 1980s, clotting factor was made from plasma from paid and volunteer donors. Paid donors included members of high-risk groups such as prison inmates, intravenous drug users and residents of impoverished nations.

From the beginning it was known that hepatitis was contained in the products. Techniques were available as early as the 1970s to inactivate the deadly virus, yet the pharmaceutical companies chose not to invest in the technology. Even after HIV showed up in the blood supply in the early 1980s, the manufacturers and the federal Food and Drug Administration were slow to act. The Institute of Medicine report states “the development of heat treatment processes to prevent the transmission of hepatitis could have been developed before 1980, an advance that would have prevented many of the cases of AIDS in individuals with hemophilia.”

The result was disastrous. Wives injected their husbands with the tainted factor. Hemophiliacs gave themselves shots. And, probably the most heartbreaking, mothers and fathers infused their children with the product that was touted as a miracle drug leading to a longer, healthier life. It turned out to be the kiss of death. (It needs to be said that the makers of these products have denied liability in this matter in response to numerous lawsuits filed against them – most of which have been settled out of court.)

A haunting question is why were tainted blood products still on the market after 1985, when there was a test available to detect HIV in blood and blood products and strict donor guidelines were in place? The answer lies in the fact that Food and Drug Administration policy never required the manufacturers to recall the products, even after it was known they contained deadly viruses.

We knew we couldn’t include everyone’s story – the numbers were just too staggering. Instead, we chose about 75 individuals to represent the thousands of blood-crisis victims.

After much scrutiny, we found the photos and stories fell neatly into four categories, that became the book’s chapter titles: The Afflicted, The Mourners, The Warriors and The Torch Bearers.

The Afflicted portrays those infected with HIV and hepatitis.

The Mourners depicts those whose loved ones were killed by deadly blood products.

The Warriors highlights the men and women, such as Terry McNeill of Dracut, Mass., who have committed their physical and material resources to the causes affecting the infected community.

Finally, The Torch Bearers celebrates those afflicted hemophiliacs who are embracing life – and those survivors who are keeping alive the memories of their loved ones felled by AIDS and hepatitis.

We are amazed by the people we met during the years we’ve worked on this project. Many of those people are in this book, some are not. Some have perished since we started. Some are dying right now. Some continue to live on, despite the odds. All of them are inspirations.

This is a testament to their spirit.

-Kathy Seward MacKay and Stacy Milbouer