There was a time in Tiffany Neese’s life when everything was just as it should be. That was when she was 6 months old.
Today she’s 24. Her older sister is an attorney. Her parents are saving for retirement. Tiffany is still learning to brush her teeth.
Medical science had offered Tiffany a life immunized against diphtheria, tetanus and whooping cough, diseases that could bring horrible results. But the promise of a healthy childhood vanished when the vaccine that was to have helped her ended up ripping her brain apart instead.
Now Tiffany is a medical statistic with a mental age of about 4. She can talk. Walk. Read a little. Write her name. She can’t tie her shoes or cut up her food. She needs help getting dressed.
She does a volunteer job at a fabric store with her mother, Debbie, but she’ll never drive a car and needs constant attention. The doors at her home have alarms in case she wanders outside by herself.
Tiffany knows she’s handicapped, but she sees it as a special gift.
“She’s the happiest person I’ve ever met,” says big sister and DU alumna Angela Neese (BA ’02).
What happened was “bad luck,” Angela says. A “hot lot” of a vaccine called DPT, which is no longer administered, made its way to physicians nationwide despite safeguards, she says. The lot was called “hot” because it contained an unacceptably high level of toxins that were a known aspect of the live vaccine.
“She had a reaction within two hours,” Debbie Neese says. “They refer to it as screaming seizures; she would scream until she exhausted herself.
“She got [the shot] on a Friday and by Sunday her eyes were crossed,” a telltale sign of the brain damage that would require her to undergo physical and occupational therapy for life.
The cost of that care is borne by the National Vaccine Injury Compensation Program, which sends Tiffany’s parents a check every month and which has paid out $1.7 billion to 1,900 claimants since 1988.
“It’s never covered everything, but it’s taken the financial burden off my family,” says Angela, 27, who is making plans to care for her sister when her parents are no longer able to do so.
“My parents were urged to institutionalize her, have another child and forget about her,” says Angela.
Instead, they arranged for therapy and special schools for Tiffany and adjusted themselves to a lifetime of care-giving.
“She’s really loving,” Debbie says. “She brings you a joy you wouldn’t otherwise have.”
“She loves life,” Angela adds. “She’s happy, funny, has high self-esteem and talks nonstop.
“She hunts for Easter eggs and still believes in Santa.”
What Angela believes in is to be wary of vaccines. She has not received a required inoculation since she was nearly 4 and continues to opt out of receiving them, which state law permits.
She agonizes over what she will do if she has her own children but says she is clear as to her advice to others: “Do your own research, know the risks and benefits, and make an informed decision. Don’t be intimidated or feel hounded into getting shots.
“Signing the waiver is OK,” she says. “But know what you’re signing.”
Debbie Neese, however, is unwavering.
“After knowing what I know I’d never get them,” she says flatly. “I’d never take the chance.”
Health officials agree that being informed is important and allow that adverse situations occur, but they insist that the benefits of vaccines “are clear.”
“We don’t want people to be frightened into not taking them,” says David Bowman, spokesman for the Vaccine Compensation Program, a $2.5 billion fund supported by an excise tax of 75 cents from every dose of vaccine purchased. “Serious reactions to vaccines are very rare.”
The DPT vaccine Tiffany received was replaced in 1991 with DTaP, an improved version developed because of the number of “adverse events.” DTaP is a “killed virus” that does not replicate when it enters the body, yet still triggers a response to build immunity, says Curtis Allen, spokesman for the Centers for Disease Control and Prevention in Atlanta.
“It’s purer and safer,” he says. “No vaccine or medication is 100 percent safe, but they are many, many times safer than they were in the ’50s and ’60s.”
Still, Angela Neese says: “When you’re the person who’s the statistic, you look at statistics a lot differently.”