thedrifter
07-01-07, 08:10 AM
For woman HIV, Navy meds, care dwindle
By Jessica Gresko - The Associated Press
Posted : Saturday Jun 30, 2007 8:22:03 EDT
WINTER SPRINGS, Fla. — Richelle Starnes’ cell phone alarm beeps to interrupt her three times a day. It’s her reminder: Take the medication.
Richelle is 26, a red-headed forward on the semi-pro Orlando Falcons soccer team, and the ring is an interruption she’s used to, a reminder she has HIV.
Now, however, her supply of pills dwindles at each alarm. She has enough to last into mid-August. After that? That’s a question she’s wrestling over with the Navy.
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 has questioned its responsibility to her. As for the pills she needs, the Navy says it won’t pay for them any more.
“That’s one thing I’m thinking about every day as I take the medication,” she says. “This is one less day that I have.”
———
One of the first things people always want to know, Richelle says, is how she became infected.
“They want to know why because they want to know how to feel about you,” she says. So she tells the story.
Her parents and older sister were living near San Francisco in 1979 when her mother Kathy became pregnant. Her father was a radioman on a Navy 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 one of her fallopian tubes.
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. How much blood Kathy received, Richelle’s father Everett doesn’t know. But when she recovered, the couple was told the Navy doctor would by reprimanded.
A year later, in 1980, 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.
———
6 a.m. Richelle is sleeping when her phone rings for the first time of the day. It’s set to vibrate at this hour. She gets up and takes three pills she’s left on her nightstand — two Crixivan and one Combivir, to slow the virus’s replication. She takes a drink from a bottle of water and tries to go back to sleep.
———
Richelle remembers the rash — brown spots on her mother’s thighs that appeared in 1990, a decade after her blood transfusion. By then, the family had moved to Maryland, and her mother was sent to the National Naval Medical Center in Bethesda. What the spots were, Richelle doesn’t know, but 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.
She was a soccer star even then, with red curls and freckles. Dr. Richard Moriarty, a former 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. Her sister was not.
A year later, Richelle told her story during the First National Children with HIV/AIDS Awareness Day in Washington.
“Some people — they sort of don’t understand. Like, they’ll go, ‘Oooh, you’ve got the AIDS,’ stuff like that, and it’s not like that at all. It lets you know who’s your real friends and who aren’t,” she said in a clip that aired on “Larry King Live.”
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 nearby lake. When she went to college, her school and soccer coach knew, but she didn’t initially tell friends.
“It was her request of us to let her do that, to live a normal life or try to live a normal life,” her father said.
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.
———
2 p.m. Richelle hasn’t eaten since noon. Her pills at this hour have to be taken on an empty stomach. She could be anywhere, but when her phone rings, she pulls out a bottle of water from her purse and a black film canister containing the day’s pills. She takes out two white, oval Crixivan tablets and swallows them.
———
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. She should really get to know him better, she thought.
Later, they started dating, but Jeff was hesitant to kiss her. Looking back, he says he knew very little about HIV. He went with Richelle to her doctors in Bethesda and asked a lot of questions. Kissing was OKed, as well as sexual intimacy, if they took precautions.
They went other places, too: parasailing and hot air ballooning and to New York City, 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. The Navy’s care was exceptional. With regular medication, her viral load — the amount of HIV in her blood — is undetectable. But Richelle was told she had become too old to see Navy physicians. Since she was no longer her father’s dependent, she would have to justify why the Navy should continue her care.
———
6 p.m. She can have dinner with the Combivir tablet she takes at this hour. If she has soccer practice, she takes it before going.
———
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 in a letter. She was shocked.
Working through two congressmen she’s managed to get her care extended — one year at a time. She knows what’s at stake. Without medication, her viral load could spike, and her health could begin to deteriorate, she says.
She has tried to live a normal life despite continued uncertainty from the Navy. She and Jeff moved to Florida, where he works in law enforcement. Through artificial insemination and months of planning, they had a baby named Braden last July. As a precaution, doctors had them feed the newborn tiny syringes of antiviral medication for weeks, even though his risk of getting HIV was low. 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 if she has to be hospitalized or for her medication, which costs thousands of dollars a year.
Richelle could use her husband’s insurance to get treatment, but the thought upsets her. What if he were to lose his job? And paying for the pills would still be a financial burden. Besides, her family was promised care, she says. The Navy owes it to her.
“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 don’t have a lawyer now.
The Navy reviewed the decision again at the request of Richelle’s congressman, Rep. Tom Feeney. Assistant Navy Secretary William A. Navas Jr. said that he was sympathetic to the situation, but the program under which she got treatment was “not intended to provide lifelong care.”
In a June 27 letter to Feeney, Navas quoted a regulation that “specifies that the ‘mere need of medical care by a former beneficiary will not support approval of such a request.’ ”
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.
———
10:00 p.m. Every night, before she goes to bed, Richelle takes her last two Crixivan of the day from a bottle she keeps in her bedroom. She sets her three morning pills on the nightstand. In a few hours, those pills will be gone, too.
Ellie
By Jessica Gresko - The Associated Press
Posted : Saturday Jun 30, 2007 8:22:03 EDT
WINTER SPRINGS, Fla. — Richelle Starnes’ cell phone alarm beeps to interrupt her three times a day. It’s her reminder: Take the medication.
Richelle is 26, a red-headed forward on the semi-pro Orlando Falcons soccer team, and the ring is an interruption she’s used to, a reminder she has HIV.
Now, however, her supply of pills dwindles at each alarm. She has enough to last into mid-August. After that? That’s a question she’s wrestling over with the Navy.
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 has questioned its responsibility to her. As for the pills she needs, the Navy says it won’t pay for them any more.
“That’s one thing I’m thinking about every day as I take the medication,” she says. “This is one less day that I have.”
———
One of the first things people always want to know, Richelle says, is how she became infected.
“They want to know why because they want to know how to feel about you,” she says. So she tells the story.
Her parents and older sister were living near San Francisco in 1979 when her mother Kathy became pregnant. Her father was a radioman on a Navy 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 one of her fallopian tubes.
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. How much blood Kathy received, Richelle’s father Everett doesn’t know. But when she recovered, the couple was told the Navy doctor would by reprimanded.
A year later, in 1980, 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.
———
6 a.m. Richelle is sleeping when her phone rings for the first time of the day. It’s set to vibrate at this hour. She gets up and takes three pills she’s left on her nightstand — two Crixivan and one Combivir, to slow the virus’s replication. She takes a drink from a bottle of water and tries to go back to sleep.
———
Richelle remembers the rash — brown spots on her mother’s thighs that appeared in 1990, a decade after her blood transfusion. By then, the family had moved to Maryland, and her mother was sent to the National Naval Medical Center in Bethesda. What the spots were, Richelle doesn’t know, but 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.
She was a soccer star even then, with red curls and freckles. Dr. Richard Moriarty, a former 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. Her sister was not.
A year later, Richelle told her story during the First National Children with HIV/AIDS Awareness Day in Washington.
“Some people — they sort of don’t understand. Like, they’ll go, ‘Oooh, you’ve got the AIDS,’ stuff like that, and it’s not like that at all. It lets you know who’s your real friends and who aren’t,” she said in a clip that aired on “Larry King Live.”
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 nearby lake. When she went to college, her school and soccer coach knew, but she didn’t initially tell friends.
“It was her request of us to let her do that, to live a normal life or try to live a normal life,” her father said.
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.
———
2 p.m. Richelle hasn’t eaten since noon. Her pills at this hour have to be taken on an empty stomach. She could be anywhere, but when her phone rings, she pulls out a bottle of water from her purse and a black film canister containing the day’s pills. She takes out two white, oval Crixivan tablets and swallows them.
———
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. She should really get to know him better, she thought.
Later, they started dating, but Jeff was hesitant to kiss her. Looking back, he says he knew very little about HIV. He went with Richelle to her doctors in Bethesda and asked a lot of questions. Kissing was OKed, as well as sexual intimacy, if they took precautions.
They went other places, too: parasailing and hot air ballooning and to New York City, 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. The Navy’s care was exceptional. With regular medication, her viral load — the amount of HIV in her blood — is undetectable. But Richelle was told she had become too old to see Navy physicians. Since she was no longer her father’s dependent, she would have to justify why the Navy should continue her care.
———
6 p.m. She can have dinner with the Combivir tablet she takes at this hour. If she has soccer practice, she takes it before going.
———
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 in a letter. She was shocked.
Working through two congressmen she’s managed to get her care extended — one year at a time. She knows what’s at stake. Without medication, her viral load could spike, and her health could begin to deteriorate, she says.
She has tried to live a normal life despite continued uncertainty from the Navy. She and Jeff moved to Florida, where he works in law enforcement. Through artificial insemination and months of planning, they had a baby named Braden last July. As a precaution, doctors had them feed the newborn tiny syringes of antiviral medication for weeks, even though his risk of getting HIV was low. 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 if she has to be hospitalized or for her medication, which costs thousands of dollars a year.
Richelle could use her husband’s insurance to get treatment, but the thought upsets her. What if he were to lose his job? And paying for the pills would still be a financial burden. Besides, her family was promised care, she says. The Navy owes it to her.
“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 don’t have a lawyer now.
The Navy reviewed the decision again at the request of Richelle’s congressman, Rep. Tom Feeney. Assistant Navy Secretary William A. Navas Jr. said that he was sympathetic to the situation, but the program under which she got treatment was “not intended to provide lifelong care.”
In a June 27 letter to Feeney, Navas quoted a regulation that “specifies that the ‘mere need of medical care by a former beneficiary will not support approval of such a request.’ ”
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.
———
10:00 p.m. Every night, before she goes to bed, Richelle takes her last two Crixivan of the day from a bottle she keeps in her bedroom. She sets her three morning pills on the nightstand. In a few hours, those pills will be gone, too.
Ellie