HIV/AIDS Links & Stories
This page contains links along with stories of individuals and how they live with HIV/AIDS in their lives.
The stories/news articles will have acknowledgements of the source(s).
*There are so, so many good sites available on the Web, these are just a small fraction.
It is our wish to give a starting point in your search/research into this malady.
We will keep our eyes open for more informative sites and welcome input from anyone
with sites to share.
~Spiritwalker and Spirit Hawk
Native Americans lose out on AIDS funds
The Arizona Republic
Jul. 4, 2005 12:00 AM
Indians are losers in the battle for federal funds for AIDS.
Their numbers are too small.
Through 2003, the latest figures available, there have been 3,026
documented Native American cases, compared with more than 350,000
cases each for Anglos and Blacks, about 173,000 Hispanic and just over
But Native American leaders say their numbers are artificially low.
Many cases are not counted because of racial misidentification, lack
of testing in rural areas with few clinics, concerns about privacy in
the Indian Health Service and denial in communities where religious
stigma has replaced traditional acceptance.
Federal policies that focus on treatment rather than prevention
infuriate Native Americans, who fear an onslaught of AIDS could wipe
out whole communities.
With most money directed toward big cities with lots of documented
cases, such as New York, Los Angeles or Oakland, little is left for
"In some ways, the Navajo AIDS Network needs the money more than
Oakland," said Marsha Martin, executive director of AIDS Action in
Washington, D.C., which lobbies for HIV/AIDS programs and policy.
"We might be able to prevent some things from happening on the
reservation. We can only intervene in Oakland."
The federal government spends about $16 billion on HIV/AIDS in the
United States, including about $11 billion through Medicaid, Medicare
and Social Security.
About $2 billion is allocated to the Ryan White CARE Act, designed to
help care for people with AIDS who do not have adequate health
insurance or other resources.
Of that, about $22 million comes to Arizona.
No one can say how much is spent directly on Native Americans, but the
money is focused on urban areas, not reservations.
In 2004, the Indian Health Service received about $3 million for HIV
assessment, prevention and treatment.
"There hasn't been enough money since the beginning," Martin said.
"Minorities are always on the short end of the budgeting."
And Indians are the smallest of minorities in the United States.
They are also the sickest from other diseases, such as diabetes. And
their health care, promised through treaties, is funded at less than
half as much per person as that for federal prisoners.
Although there are signs that AIDS could explode in their ranks, the
documented cases are low.
But they believe there are undetected cases spreading in isolated pockets.
"I suspect that sooner or later we will start to see much higher
rates," said Dr. Jim Cheek, director of the Division of Epidemiology
for the Indian Health Service. "The task at hand is, How are we going
to detect when that happens?" Cheek said. "Are we going to be able to
bring resources to bear?
"The plan, if I could say there's any plan, is that we will be able to
demonstrate a need and secure resources.
"There's always a possibility we won't get the money we need. On the
other hand, it's an infectious disease."
And, historically, health care for Indians came only after the
smallpox epidemics ravaging their populations in the 1800s threatened
to boomerang back into the Anglo populations.
John Carr, who is Cherokee, Sac-Fox and Chickasaw, said the Indian
Health Service in Tulsa was not aggressive in treating his case.
Carr is 44 and has had AIDS for 20 years.
The virus attacked his spinal cord, numbing his legs, leaving him in a
One day, he threatened to commit suicide in his doctor's office.
"If tests show I have reflexes, how come I can't walk?" he asked his
doctor. "If you can't get me some help, I'll take care of the
situation my ownself."
He made a motion like slashing his wrists.
The doctor put him on antidepressants and started physical therapy.
Today, Carr is free of his wheelchair, but he now gets his care at a
clinic outside the Indian Health Service.
Everyone agrees the only way to slow the spread of the disease is to
get those infected into treatment.
But it's expensive, about $15,000 a year, some estimate.
Of the million people in the United States who are HIV-positive, half
do not receive treatment.
That means that they move more quickly to an AIDS diagnosis and that
they are more likely to continue risky behaviors that infect others.
"We are at a critical time," Martin said. "Now it's 1 million,
eventually it may be 2 million or maybe 10 million."
Treatment saved Phillip Smith's life.
Smith, a 25-year-old Mississippi Choctaw from Oklahoma City, keeps his
pills in a tin box decorated with pictures of angels: Kaletra, Viread,
Emtriva and Bactrim, three anti-retroviral medications and an antibiotic.
After being diagnosed with two AIDS strains, Smith's weight dropped to
125 pounds from 200 , and he was in a wheelchair.
"I thought I was going to die."
Today, Smith has gained weight and visits schools to tell young people
to protect themselves.
His mother credits the medications.
"My niece started the treatment too late," she said. "She never got to
take the medication. She went into a coma and never came out."
The fight for money pits minorities against each other.
"Even among other ethnic minority communities, we're a very small
percentage," said Michael Bird, executive director of the National
Native American AIDS Prevention Center.
"People have said, 'You don't have the problems we do. Those resources
should be going to our people.' "
Bird said people think Indians are rich.
"They've bought the whole notion that Indians are all taken care of
cradle to grave and that we have more money than we know what to do
with because of casinos."
When New Mexico wanted to close the clinic where Kory Montoya got his
AIDS medications, he got mad.
He confronted the director for public health service.
"I have a voice," said Montoya, 39, a Jicarilla Apache from
Albuquerque. "I'm not scared. I'll do it."
Montoya was diagnosed with HIV in 1991 and with AIDS in 2001.
When he told his mother, she closed the door in his face.
Montoya went in and took his military photo off the wall.
"If you can't love and support me, why did you give birth to me?" he
told her. "I can't change myself. Be happy now, your son is gone."
He became active in organizations for Native Americans with HIV and
began talking about the disease. When Montoya spoke at a rehab clinic
in his hometown of Dulce, N.M., word got around.
"It hurt my family," he said. "People glared at them, talked about
them. But a few people came up and told me, 'Maybe this is what you
were put here to do.' "
Montoya said he won't stop telling his story.
"I have AIDS. This is my name. I'm Native American. I'm Apache. This
affects everybody, not just a certain person, sex or race."
Indians have been ignored since the beginning of the epidemic, said
Ron Rowell, a Choctaw with a master's degree in public health from the
University of California-Berkeley.
Rowell was living in San Francisco in the early days of the AIDS epidemic.
In mid-1987, he and a small group of Native American doctors and
nurses proposed an HIV/AIDS program in a letter they hand-delivered to
the Indian Health Service in Rockville, Md.
Six months later, he got a letter back. "Essentially, it said, 'We
have received your unsolicited proposal. Thank you. IHS does not yet
have an AIDS policy. When we do, we'll evaluate your unsolicited
proposal in light of that policy.' "
The next year, Rowell founded the National Native American AIDS
Prevention Center in San Francisco. But after years of fighting for
money, he burned out and left.
"There's no relationship between need and resources," Rowell said.
"It's just whatever they happen to throw our way, table scraps,
because we're not politically important."
He sees the lack of care for Native Americans with HIV as governmental
"There is no commitment by the federal government, whose
responsibility it is," Rowell said. "I think it's neglect."
"There may be times in Indian cases you could argue it's purposeful.
We just don't matter. We're an inconvenience.
"We remind them over and over about the treaties, the Constitution,
U.S. history. It does no good. We don't have the numbers. We don't
have the power."
New drug blocks HIV from entering human cells
Indo-Asian News Service
Tokyo, July 7, 2005
A new drug that blocks HIV virus from entering
human cells and causes almost no side
effects has been developed by Japanese researchers.
The drug, code named AK602, was tried on
40 AIDS patients in the US and almost no side effect was found.
When patients took 0.02 ounces of AK602 twice a day
for 10 days the HIV dropped to an average of
one per cent, according to a research team led by Hiroaki Mitsuya of Kumamoto University.
Current AIDS medications often lose their effectiveness
after a few days due to the virus' resistance,
but the AK602 reacts to human cells instead of attacking the virus, said Mitsuya.
The new drug becomes attached to the
protein that acts as an entrance into human cells for the AIDS virus,
thereby preventing HIV from entering.
The drug's main feature is that it shuts out the
AIDS virus at the point when it tries to intrude into a human cell.
According to statistics, during 2004 around
five million adults and children in the world became infected with HIV,
the virus that causes AIDS. By the end of the year,
an estimated 39.4 million people worldwide were living with HIV/AIDS.
The year also saw more than three million deaths from AIDS,
despite the availability of HIV antiretroviral therapy,
which reduced the number of deaths in high-income countries.
South Africa: Ritual Circumcision Likely Contributing to HIV Spread
UN Integrated Regional Information Networks
July 7, 2005
Posted to the web July 7, 2005
South African medical experts are concerned
that the repeated use of unsterilised blades in the ritual circumcision
of adolescent boys might be spreading HIV.
The practice, which is performed without anaesthesia,
is meant to reinforce the belief that "real men can endure pain",
but hundreds of boys have died or been maimed by the procedure,
leading provincial health officials to criticise the tradition.
The Baltimore Sun newspaper in the US quoted Graeme Meintjes,
a South African AIDS specialist and author of a book on ritual circumcision, as saying,
"We can imagine, in some communities,
about 20 percent of boys going off to the bush [for circumcision]
will be HIV-positive - it's an extremely high risk."
However, researchers have been hoping that
circumcision might become an effective tool in slowing
the spread of HIV in Africa, where an estimated
70 percent of men are circumcised at
birth or during rites of passage ceremonies.
[ This report does not necessarily reflect the views of the United Nations ]
This first story is personal to me. Lisa Tiger is a young woman whom I am proud to call my sister.
We do not share bloodlines that we know of, however our families were close as we grew up.
I am proud of Lisa for her choice to keep on living and how she is doing it.
'Keep on keeping on'
Like her Indian ancestors, Oklahoma mother is a survivor
The Arizona Republic
Jul. 4, 2005 12:00 AM
Lisa Tiger sits on the floor of her mother's home in Muskogee, Okla.,
surrounded by kids, pizza boxes and balloons, and helps her daughter
Cricket open a pile of presents for her first birthday.
Cricket is the continuation of the Tiger blood, a fearless mix of
Muscogee Creek and Seminole, survivors of the Trail of Tears, the
forced removal from their homelands to Oklahoma in the 1800s.
It is a heritage Lisa says has helped her through her darkest times,
when her father died, when her brother was murdered.
When she was diagnosed with AIDS.
Lisa, infected by a boyfriend, is both an indicator of the problem in
Indian country and a sign of hope.
Heterosexual transmission shows the disease is breaking out of the
high-risk groups of men who have sex with men or intravenous drug users.
But the fact that Lisa has remained healthy and given birth to a
healthy baby shows that treatment can prolong and enrich lives.
Lisa grew up in Muskogee, a cheerleader, arm-wrestling champion and
gymnast who kept her goal of graduating from high school without
drinking or having sex.
Her father, a famous Muscogee Creek artist, accidentally shot himself
while target-practicing when Lisa was 2 1/2.
"I thought if I was going to lose him, it was good I was so young, so
I don't remember it," she said. "But I went through that pain. And I
have a great fear of losing somebody.
"It's why I prayed so hard. I figured if God could see how thankful I
was he wouldn't take things away."
She was 25 when her younger brother, Chris, an artist like their
father, was shot to death outside a bar.
She had to identify his body at the hospital.
"It was every bit as painful as I imagined it to be."
In her 20s, Lisa began dating the man who would give her HIV.
"My idea was that it was a big-city disease on the East Coast or West
Coast. I knew it wasn't in our community."
After they broke up, a gay friend told her he had been intimate with
"I said, 'Wow, if he's been with you, he's probably been with other
men. He could have AIDS.' "
She decided to get tested.
"I never thought for a minute that I would be positive."
The doctor, her mother's cousin, left her a message telling her to
come into the office.
"I called my mother and had her listen to the message. She said, 'It's
probably nothing. She just can't leave that message on the machine.'
"I told her, 'You call her and find out.' "
It was the Fourth of July, and Lisa went to a powwow and stopped to
see some friends on the way home.
"I was thinking about my life, thinking what if I was positive," she
said. "I thought about my brother, Chris, and I had this great feeling
of peace. It puts things in perspective.
"No matter how old you get, eventually you die and you go on to be
with the people you lost. My dad, my grandmother, my brother were all
gone. There were almost as many people I loved there as here."
When Lisa got home, her mother, Peggy, was waiting at the front door.
"Oh, baby, they found antibodies," her mother said.
"I don't even think she knew what it meant," Lisa said. "She was
trying not to cry. That was hard for me. All she's done her whole
entire life was to say a parent has the right to go before her
children. She'd had to bury her son, and two years later, I get a
"I told her 'I'll live as long as I possibly can, and when you're
ready to die, we'll go together.' "
The first thing Lisa asked after her diagnosis was whether she could
still have children. The doctors told her she could, that at that time
there was a 15 to 20 percent chance that she could pass the disease on
to her child.
While Lisa was stoic about the diagnosis, her mother, Peggy, and
sister, Dana, were devastated.
"I said, 'Don't tell anyone. It will spread like wildfire,' " her
mother said. "She said, 'Mom we can't keep a secret like this.' "
Lisa, 27, decided to return to the celibacy that had made her happy in
high school and went on the lecture circuit.
After giving a speech in South Dakota, she adopted four children she
had met on the Pine Ridge Reservation.
In 2003, she reunited with an old boyfriend she had dated chastely
during her celibate period. They had broken up over his drinking.
He told her he quit drinking; she told him she was no longer celibate.
Two weeks later, they eloped.
They wanted a baby, and new drugs reduced the possibility of passing
on the virus to less than 1 percent.
Using a syringe her doctor gave her, she and her husband performed a
do-it-yourself artificial insemination to avoid the danger of
unprotected sex to her husband.
Cornelia Margaret TaLuda "Cricket" Dana Tiger was born March 12, 2004.
"I didn't know I'd keep on keeping on," Lisa said. "I just wanted to
make it to 50.
"Of course, now that I have the baby, I have to make it to 80."
Making a choice to live
Apache man sharing his AIDS story with other Natives
The Arizona Republic
Jul. 4, 2005 12:00 AM
Isadore Boni fidgets in a chair outside the office of San Carlos
Apache Chairwoman Kathy Kitcheyan.
He got more nervous each mile that he traveled from Phoenix toward the
homeland he abandoned after being diagnosed with HIV.
He hadn't walked these streets, talked to his sister or visited his
father's grave in three years.
Now, health workers have invited him to help organize HIV education
for his tribe, and he wants to tell Kitcheyan what he is planning to do.
When one of the staff asks why he is here, he buries his face in his
hands and weeps.
Finding Native Americans with AIDS willing to share their story,
people with whom tribal members can identify, is crucial to AIDS
But the stigma in small, tight-knit Native American communities,
usually keeps people silent.
Isadore, now 38, grew up in San Carlos, the son of alcoholic parents.
"He was a top student," said his mother, Marion Boni, who has been
sober for 20 years and works for tribal social services. "He was
always aiming for the best. He played volleyball, was in the band."
But kids in school called him names because he was gay.
He left and went to a boarding school in Santa Fe.
After graduating in 1985, he went to work for the tribe.
In 1996, he earned a bachelor's degree in social work from Arizona
State University and worked for the tribe's Child Protective Services.
It was the first time he had money.
"I could buy anything I wanted," he said. "I started going to Phoenix
to the bars, drinking, doing drugs, socializing."
He was soon arrested for driving under the influence, quit his job and
wandered around Phoenix, lost.
When his father had a heart attack and died in 2002, Isadore went home
for the funeral. He gave his father's eulogy, then stayed on to help
A few months later, he began to feel sick, with swollen glands and a
high fever. He was losing weight. He suspected it was HIV but didn't
want anyone on the reservation to know.
When he got the diagnosis, he told his mother.
"You're lucky," she said. "You'll get to be with your dad soon."
Then he found out he had hepatitis C, which further damages the immune
system. He came back to Phoenix, stayed at the YMCA.
He bounced from program to program, halfway house to the streets. And
he kept getting sicker.
Eventually, he was diagnosed with AIDS. He finally got a room in a
low-income housing unit run by Native American Connections, a
"I see other Indians on the street who are infected," he said. "They
have given up."
He decided to go public and was interviewed on television and in
Native American newspapers. He helped set up a support group for Natives.
"Maybe things would have been easier if I kept my mouth shut," he said.
"By being quiet, we live with it secretly and die secretly. I choose
to live rather than give up."
He spoke to a Native American senior-citizens group, and his mother came.
"People called to say they saw him on TV, that they liked it that he
was open because around here everybody hides it," his mom said.
Still, Isadore put off going back to the reservation.
"I'm scared to go home," he said. "There are relatives who disowned
me. But I miss my family, my nieces, my nephews. I want to see my
And so Isadore is sitting on this seat outside the chairwoman's
After meeting with her, he attends a meeting with tribal health
"I've discovered a lot of people from San Carlos have HIV," Isadore
tells the group. "Some have passed away without getting treated."
They agree to set up a task force, with Isadore as the spokesman.
Afterward, Isadore visits his sister, and they laugh and joke in her
kitchen. He slips his nephews $1 each, mad money from a lost uncle.
And he visits his father's grave on a dusty hillside outside town.
He pulls weeds from the mound, pushes plastic flowers into the hard
earth and rests his hand on the white cross. He points to the
gravesite next to his father.
"This is where I want mine to be."