Sunday, July 1, 2007

Error gave woman HIV, but Navy turns its back on her

WINTER SPRINGS - Richelle Starnes' cell phone alarm beeps to interrupt her three times a day. It's her reminder: Take the medication.

Richelle is 26, a forward on the semipro Orlando Falcons soccer team, and the ring is a reminder she has HIV.

Now, however, she has enough pills to last into mid August. After that? That's a question she's wrestling with the Navy over.

It's the Navy that has been treating Richelle since she was 10. That's when she learned she was infected with HIV, an infection she and her family blame on the Navy. But as Richelle has become an adult, the Navy says it no longer will pay for her pills.

* * *

Richelle's parents and older sister were living near San Francisco in 1979 when her mother Kathy became pregnant. Her father was a radioman on a submarine. But soon after Kathy became pregnant, a painful lump on her side and bleeding sent her to a Navy doctor. He sent her home, missing signs she had an ectopic pregnancy, that a fertilized egg had implanted not in her uterus but in a fallopian tube.

A few days later, the tube burst. Kathy was rushed to the nearest hospital, not a Navy facility. She needed immediate surgery and a blood transfusion. The couple was told the Navy doctor would be reprimanded.

A year later, Richelle was born. It would be a decade before the family knew anything was wrong, that in an era before blood was tested for HIV, the blood Kathy had received was tainted.

* * *

Brown spots appeared on her mother's thighs in 1990. By then, the family was in Maryland, and her mother was sent to the National Naval Medical Center in Bethesda. Doctors saw the blood transfusion on her mother's medical charts and ordered an HIV test.

Richelle's parents told her and her older sister over ice cream. Richelle remembers crying, that her mother's pill case beeped when it was time to take medication, and being told she and her sister would have to be tested.

Dr. Richard Moriarty, then a Navy doctor, remembers thinking she didn't look like a child with HIV. A day after her 10th birthday, he told her family. Richelle was positive.

* * *

Some people didn't understand. In a home economics class, one classmate refused to cook in her kitchen. Another time, kids said they didn't want her swimming in a lake. When she went to college, her school and soccer coach knew, but she didn't initially tell friends.

She waited a semester, then told her soccer team. There were never any questions. But when she told her roommate, their relationship soured. By the end of the semester, Richelle was sleeping on friends' floors.

* * *

In graduate school, Richelle knew she wanted to study HIV policy and said so in introductions. Someone asked why, just making conversation.

"Because I'm HIV positive, " she said.

Her frankness impressed a classmate, Jeff Starnes.

They didn't know each other well, but in 2003 Richelle's mom died of complications from AIDS. Jeff sent Richelle a card.

They started dating, but Jeff was hesitant to kiss her. He went with Richelle to her doctors in Bethesda and asked a lot of questions.

They also went parasailing and hot air ballooning and to New York, where they saw the musical Rent. Her mom had wanted to do some of the same things, but never got the chance. Later, Jeff had another question. Would she marry him? She said yes.

But trouble started soon after. For years, Richelle had flown to Maryland to see her doctor and get medication. She'd participated in research studies and talked to medical students about her disease. With regular medication, her viral load - the amount of HIV in her blood - is undetectable.

* * *

In 2005, the Navy told Richelle she'd need to get treatment elsewhere. Her case did not satisfy the "compelling criteria" for a special designation that would extend her care, the Navy wrote.

Working through two congressmen, she's managed to get her care extended - one year at a time.

She and Jeff moved to Florida, where he works in law enforcement. Through artificial insemination and months of planning, they had a baby, Braden, last July. As a precaution, doctors had them feed the newborn tiny syringes of antiviral medication for weeks. Tests show he is HIV-free.

On June 22, she got her decision on care for this year. The Navy will let her see their doctors but will no longer pay for hospitalization or for her medication, which costs thousands of dollars a year.

"They can't make what they caused right, " Richelle said. "They can't bring my mother back. They couldn't promise me a future. What they could do was take care of the medical side of it."

The doctor and nurse who treated her as a child agree, and wrote the Navy. That promise was one reason the family never thought of suing and doesn't have a lawyer now.

The Navy reviewed the decision again at the request of Richelle's U.S. representative, Tom Feeney. Assistant Navy Secretary William A. Navas Jr. said he was sympathetic to the situation, but the program under which she got treatment was "not intended to provide lifelong care."

Without help from the Navy, Feeney, a Central Florida Republican, said he will look at writing a personal bill for Richelle, one Congress could pass to grant her care.

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