News (Updated July
24, 2011)
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By Lindsay Tice, Sun
Journal
Posted July 05, 2011
It was 1986 and there
weren’t yet good guidelines for breaking the news. Brandon Garette’s doctor
told him he was HIV positive over the phone.
Garette was 21 years old.
“I went through six
months of nightmares of my funeral, who was there and who wasn’t there. Seeing
the casket lowered into the ground all the time,” said Garette, who believes
he got the disease from his first boyfriend. “It was just horrifying.”
Back then, Garette was one
of 82 people known to be living with HIV/AIDS in
Then, there were no good
treatments. Today, several drugs effectively combat the disease.
Then, people with HIV or
AIDS were ostracized, denied medical attention, housing, the right to go to
school. Today, although there’s still a stigma attached to HIV and AIDS, the
terror is largely gone.
Garette, who lives in
“I say, ‘I woke up
this morning, my eyes opened, I’m breathing. It’s a good day,’” said
Garette, who just turned 46.
But while HIV/AIDS is no
longer the death sentence it once was, those who deal with it say there are
still problems, including an increase of nearly 100 cases a year in Maine and a
drop in funding and public attention as HIV and AIDS become something less scary
and more livable.
In the world of HIV, life
is better. But some worry lagging education and slacking prevention could soon
make those dark days return.
“I think the virus needs
to be put on the front burner again,” Garette said.
First cases
On June 5, 1981, in its
Morbidity and Mortality Weekly Report, the federal CDC ran a short notice about
the unusual illness of five men in three hospitals in
It was the first national
hint that something was wrong.
The Associated Press and
Los Angeles Times immediately wrote about the CDC’s report, according to the
U.S. Department of Health and Human Services. A day later, the San Francisco
Chronicle got in on the story. Soon the CDC was flooded with reports from
doctors who’d seen that lung infection and other opportunistic infections in
gay patients, some from as far back as the 1970s. Within six months the CDC had
learned of 270 cases, including 121 deaths.
“I can remember
admitting young men and we knew they were dying. They totally had dementia. They
were totally wasted. What we spent our time doing was hanging morphine drips,”
said Lemire, who now specializes in HIV/AIDS patients. “My first four years
with the disease, all we offered them really was a management of their
deaths.”
By 1982, GRID had a new
name: Acquired Immune Deficiency Syndrome, or AIDS. Within a few years, AIDS
would spread to thousands in the
In 1984, the first three
AIDS cases were diagnosed in
In 1987, Garette learned
his boyfriend of six months had been “hustling” in a park in
Crushed by the bad
relationship, Garette took an overdose of sleeping pills in an attempt to kill
himself. The aftermath is hazy for him, but Garette was told he called an
ambulance at the last minute, that emergency workers found him passed out on his
living room floor, that his heart stopped three times at the hospital. Once he
was stable, he was sent to the Augusta Mental Health Institute. Although Garette
doesn’t remember making the request, he was told he asked for an AIDS test
when he got there.
A week after he was
discharged from AMHI, Garette’s doctor gave him the news over the phone: He
had HIV, a precursor to AIDS. The doctor told him he had six to 12 months to
live.
“After just coming out
of an attempted suicide and getting that news, you can only imagine what I was
going through,” Garette said.
He spent the next six
months battling depression and dealing with nightmares of his impending death.
Across the country, many AIDS patients were dying within months of diagnosis.
Some lasted a few years.
Panic ruled as the nation
struggled with the epidemic that was growing so fast it would become the leading
cause of death among Americans 25 to 44. In the mid-1980s, many people didn’t
understand how the disease spread and they feared contracting it from even
common contact. In Indiana, Ryan White, a hemophiliac teenager who contracted
AIDS though tainted blood products, was denied entry to his middle school. In
“It was a very different
atmosphere in which people were very, very afraid. The fear within our
communities around HIV and those issues was just rampant,” said Andrew Bossie,
executive director of the Maine AIDS Alliance in
In
But despite that growing
advocacy and the “coming out” of some high-profile AIDS patients —
including actor Rock Hudson — it wasn’t uncommon for people to hide their
diagnoses. They feared being abandoned by friends and family. They believed they
would be shunned by neighbors, kicked out of school, fired from work.
Garette quietly dealt with
his HIV for months. Close friends and family members knew he’d been diagnosed,
but some had a hard time believing it.
“Whenever I was around,
they would harp on it. ‘You’re just doing it for attention. You don’t
really have this’ and ‘You look so healthy and people who have it look so
sick,’” he said. “AIDS is like cancer; it eats from the inside out. They
just couldn’t understand that.”
After six months of
nightmares, Garette had an epiphany: He didn’t have to silently fade away.
“Call it divine
intervention, call it whatever you want … I was always one of those kids in
school that was always picked on and was always the outcast, so I never cared
about what people said about me when I got older. I figured maybe this
[diagnosis] wasn’t a bad thing at all, maybe there’s a reason for this. And
the only reason I could come up with was the fact that I’m not afraid of what
people say about me,” he said. “So that’s when I decided maybe I’ll get
into public speaking.”
Garette began speaking
about HIV/AIDS at schools and adult education programs. He went public, doing
radio, TV and newspaper interviews about living with HIV.
But even as self-assured
as Garette was, he worried about the impact of publicizing his diagnosis. As
insurance, he spoke only to media outlets in northern
“I didn’t have to
worry about people seeing it and going after my family or anything. That was a
real fear for me,” he said. “I didn’t want retaliation against my
family.”
Growing treatment
In 1987, federal
government approved AZT to treat AIDS. It would remain the preferred AIDS drug
treatment for a decade, and some patients credited the powerful medication with
extending their lives. In 1994, prenatal use of AZT was also found to
drastically reduce the risk that an HIV-positive mother would pass the disease
onto her child. That finding would nearly eliminate the number of babies born
HIV-positive in the
But AZT had debilitating
side effects that sickened some patients so badly they refused to take it. And
the drug didn’t help stave off the disease forever. Garette watched friend
after friend die. At one point, he bought his own cemetery plot and made his own
final arrangements so his family wouldn’t have to do it when his time came.
By the mid-1990s, a
cocktail of drugs became the favored treatment for AIDS, but that wasn’t
perfect, either. The cocktail contained AZT and other drugs that had to be taken
on a gruelingly precise schedule — some with food, some on an empty stomach,
some within certain hours — and delaying or missing a dose could cause the
virus to mutate and attack again full force. The cocktail also caused
debilitating side effects, including lumps of fat some call a “buffalo
hump,” depression, diarrhea, nausea and weakness.
“I couldn’t take any
of them,” Garette said. “I was so sick in bed after three days that I could
barely move. It was just horrible.”
In 1998, a
Nikolas died at age 11.
His family would not publicly say whether his death was related to AIDS.
By the late 1990s, the
drug cocktail was a staple of AIDS treatment. Like AZT, it was credited with
extending lives. Patients were living years, and in some cases, decades. And
thanks to education, public service campaigns and the diagnoses of more
celebrities — including basketball great Magic Johnson — more people knew
about HIV/AIDS and how it was contracted (through blood, breast milk and sexual
contact). The stigma was less. But it was still there. And among some, there
still seemed to be a distinct lack of knowledge.
Judy Emch, then-director
of health and safety for the United Valley Chapter of the American Red Cross,
conducted HIV/AIDS education and prevention workshops throughout the
Lewiston-Auburn area.
“I remember local
political leaders in Lewiston-Auburn saying, ‘What? We don’t have HIV
here!’ ‘Yes, unfortunately you do,’” Emch said. “There was just a ton
of misinformation.”
Like Emch, Garette battled
that misinformation by teaching about HIV/AIDS and by public speaking. In the
early 2000s he officially abandoned his birth name — Eric James Clifford —
in favor of the pseudonym Brandon Garette. Although he’d been careful about
where he spoke, his family still felt the sting of his public acknowledgement of
his disease.
“There are still a lot
of people out there that discriminate against this disease, still think you can
get it from being in the same room, drinking from the same glass, eating off the
same plate,” he said. “I mean, there are still some people out there who
don’t know anything about this disease.”
Hope and fear
Today, more treatment
options exist for AIDS, including medication taken just once or twice a day.
Side effects can still be a problem, but doctors say the new medications are
more easily managed.
“I tell my new patients,
‘You will not die of HIV.’ We can make that promise clearly and without
misleading anyone,” said Lemire, medical director of the India Street Clinic
in
No longer a death
sentence, AIDS is most often treated like a chronic disease. Some consider it
something akin to diabetes — life-threatening and complex, but controllable.
“Ten years ago, we
wanted to keep them alive. Now we know we’re going to keep them alive from
HIV,” Lemire said.
But lowering the status of
AIDS from a fatal disease to a chronic one comes with issues of its own. In
The local chapter of the
Red Cross stopped doing AIDS education years ago because it couldn’t find the
funding.
Most independent nonprofit
AIDS groups in
The Maine AIDS Alliance,
which was founded to advocate for those battling the disease and to support
nonprofits doing AIDS work, had planned earlier this year to close its doors and
start a successor organization with a slightly different mission. Instead,
because of a loss of grant funding, the alliance will completely shut down and
will not restart.
“We were responding to
what we see as a huge sea change on a national level,” said Bossie, whose last
day as executive director was Friday. “We saw a couple of things coming down
the pike and we said, ‘OK, we need to move to a new model.’ Then everything
came a little faster.”
And even more changes are
expected soon. The federal government has put together a national strategy for
dealing with AIDS. As part of that strategy, funding is expected to be focused
on states and cities with high AIDS rates.
“We are all but
anticipating federal cuts for prevention are on their way,” Bossie said.
Without advocacy groups
like the Maine AIDS Alliance, without education from independent organizations
like the Red Cross, and without greater funding for prevention, many in the AIDS
community fear fewer people in the future will understand the virus and how to
prevent it. They worry AIDS will surge.
Lori Jacques, case manager
for the HIV/AIDS case management program at St. Mary’s
The number of people
living with HIV/AIDS in
“There’s more work to
be done,” Jacques said.
Those left in the AIDS
community are trying to do that work. Western Maine Community Action has applied
for — and was recently granted — the ability to set up a needle exchange in
Lewiston-Auburn in an effort to reduce the chances of people getting HIV from
sharing dirty needles. In its last act as an organization, the Maine AIDS
Alliance will grant about $20,000 to study what
And individuals like
Garette will keep working to get the word out about HIV/AIDS.
After 25 years with the
virus. Garette is sometimes healthy, sometimes not. He has a team of doctors
supporting him and two mini-Dachshunds to go home to at night. He knows people
who think they’re invincible to AIDS, and he tells them different.
Soon he’ll tell them as
Eric James Clifford, not Brandon Garette. That time is over.
“I’m taking that name
back,” he said.
ltice@sunjournal.com
Gregory Pappas, MD, PhD;
Yujiang Jia, MD, DrPH; Omar A. Khan, MD, MHS
Posted: 07/15/2011
Historical Overview
HIV/AIDS, unfortunately
now a household term, was first described 30 years ago. This year represents an
"anniversary" of sorts for the disease, providing an opportunity not
simply to look back (which has been done effectively elsewhere), but also to
analyze our current approaches in the United States and refocus our efforts on
high-risk and emerging groups at risk. Behavior change, the backbone of
prevention of new infections, is at risk of being displaced by biomedical
interventions. The 30-year mark directs our attention to opportunities arising
next year that may help revitalize the national conversation and the agenda for
prevention of this disease.
The first report of what
we now know as "AIDS" was published in June of 1981 in the Centers for
Disease Control and Prevention's (CDC's) Morbidity & Mortality Weekly
Report. This report described a type of pneumonia -- then known as Pneumocystis
carinii and since renamed P jiroveci -- that affected mainly immunocompromised
individuals. Similar reports quickly followed.Two years later, the virus (HIV)
responsible for AIDS was isolated by Montagner and Gallo who share a Nobel prize
for that accomplishment.
The initial risk groups
that were identified consisted of gay men and injection drug users. Sexually
linked cases in gay men, persons with hemophilia, and transfusion recipients
demonstrated that, in the
AIDS, Homosexuality, and
Human Rights
Throughout the epidemic,
it was clear that homosexual males were at particularly high risk for HIV/AIDS.
They were the first group affected, and after 30 years, the one constant in
HIV/AIDS work is that gay men remain an important risk group for the disease.
More than any other disease, HIV/AIDS became inextricably linked with human
rights. It attracted powerful advocates as well as powerful detractors, but
became arguably the world's most visible disease. From the outset, HIV/AIDS
discussions have been about far more than the science. Any attempt to examine
the disease now must take into account the issues of advocacy, male-to-male
sexual behavior, interventions targeted at behavior change for heterosexuals and
homosexuals, and the unique cultural milieu in which AIDS exists. Unlike
malaria, cholera, or influenza, with HIV/AIDS, the politics of science,
identity, culture, and even religion become wrapped up in a discussion of policy
to combat the disease.
Recent Advances in
Treatment
In the last decade, one of
the most important scientific advances has undoubtedly been the advent of
antiretroviral therapy (ART), also known as highly active antiretroviral therapy
(HAART). HAART was used initially as a supplement to prevention, which is the
most critical aspect of disease control. However, the discussion on treatment is
now in danger of assuming disproportionate importance.
Along with driving down
HIV-related death rates, advances in ART clearly suggest that HIV infections can
be averted by driving down viral loads. Recent findings, including the
Pre-Exposure Prophylaxis (PrEP) study, the Center for AIDS Program Research in
South Africa's 004 Microbicide Study, and the HTPN052 clinical trial,have given
us new pharmacologic tools with which to control the epidemic. This success
comes at a price, overshadowing behavior-change efforts that historically have
dramatically reduced HIV infections. Treatment has become a new tool for
prevention, and although new tools are essential, excitement about these
therapies and "test and treat" methodologies must not undercut efforts
in prevention that have always been, and remain, essential to ending the
epidemic.
By Associated Press,
Published: July 17, 2011
ROME — The head of the
United Nations AIDS program called Sunday for an increase in access to drugs
that help treat or prevent the spread of the disease, saying it is “morally
wrong” to keep millions of people off lifesaving medication.
Michael Sidibe, executive
director of UNAIDS, said the gap in access to HIV treatment should be closed
both within and between countries.
Sidibe called for better
delivery on the ground, a reduction in the number of years it now takes to turn
scientific discoveries into actual progress for the poor, and increased
cooperation among states, pharmaceutical companies and international
organizations.
“We must use innovation
to overcome social division and inequity,” he said at the opening of an
international AIDS conference in
In
“Most of those people
don’t know what’ll happen to them. Do we tell them that they should die?”
Sidibe said. “Having 9 million people wait day and night with their families
is morally wrong. It is socially unacceptable.”
The conference opened a
few days after the announcement of a significant scientific breakthrough in
stopping the spread of the virus: Two studies conducted in Africa showed that an
antiretroviral drug made by
In both studies,
participants were also offered counseling and free condoms, which may help
explain the relatively low overall infection rate.
According to figures
provided at the conference, more than 25 million people have died of
AIDS-related illnesses since the beginning of the pandemic 30 years ago, and an
estimated 33.3 million people are currently living with HIV. Every day, 7,000
people across the world are infected, and more than 4,900 die from AIDS-related
illness.
Even as conference
speakers hailed the encouraging scientific advances, questions remained
unanswered: How to make sure people remain on treatment, how to achieve
universal coverage and how to reduce the risk of people abandoning condoms?
Sidibe said these questions needed urgent answers.
And, he added, any
discovery must be translated more quickly into policies accessible to those who
need treatments, particularly in poor nations. Sidibe also said any trade
agreement that would limit access to medication, especially generic ones, should
be opposed.
That concern was shared by
Elly Katabira, the president of the International AIDS Society and conference
chair, who said: “I hope our voice will be heard in asking that access to all
drugs, including generic drugs, will not be diminished by new laws or
regulations anywhere in the world.”
Gilead Sciences Inc.,
based in
The conference organized
by IAS gathers some 5,000 researchers, scientists, clinicians and public health
experts. It runs through Wednesday.
Copyright 2011 The
Associated Press.
By DONNA GORDON
BLANKINSHIP Associated Press © 2011 The Associated Press
July 12, 2011
A dozen scientists or
teams of researchers will each get an additional $1 million over five years to
take their ideas to the next level and see if they have the potential to save
lives, the foundation announced Wednesday.
The foundation initially
chose more than 500 scientific ideas out of nearly 20,000 proposals for its
Grand Challenges Explorations grants, worth $100,000 each, saying it would be
taking a calculated risk by giving money for whatever wacky idea the world's
best minds come up with to combat malaria, HIV and other world health problems.
The ideas remain highly
speculative into the $1 million stage.
"They run against
conventional wisdom," said Chris Wilson, director of the foundation's
Global Health Discovery program. "Of course, more often than not,
conventional wisdom is right."
As an example, he points
to the idea of using microwaves to kill malaria parasites, from within their
hosts — mice for the experiment, but humans eventually.
"That's probably not
going to work,"
The scientist, Jose Stoute,
a medical researcher who specializes in infectious diseases at
"Science is a place
where lots of things don't work," he said, adding that the foundation
remains optimistic about these grants. "I think we're cautiously optimistic
that somewhere along this path, some of these might happen," he said.
To graduate to a million
dollar grant, the scientists have to prove their initial idea has merit as a
potential way to save lives and that it is practical and potentially scalable
and affordable,
Stoute said he and his
co-collaborator, Carmenza Spadafora at
Since the malaria parasite
naturally collects iron as a byproduct of its actions within the human body,
they thought malaria might be another good target for microwave treatment.
Stoute is working with microwave engineers to design a machine to deliver the
treatment in the lab.
Collaboration among
different kinds of scientists is an attribute of many of the Grand Challenges
projects.
Mike McCune, professor of
medicine at the
His project, to fight HIV
infection while a fetus is in the uterus, takes a number of known scientific
principals and combines them in a new way.
He is working to utilize
what scientists already know about the unique and effective immune system of the
human fetus, plus the way vaccines work on newborns and the success so far at
decreasing the number of HIV transmissions from mother to child in this country.
Considering how much blood
passes from mother to baby while an HIV-affected mother is pregnant, McCune says
it's nearly miraculous that most of those babies of those mothers are not born
HIV-positive. Most are affected later through breastfeeding or via blood at
birth. His goal is to strengthen and prolong a child's natural immunity.
For now, McCune is testing
his theories on non-human primates, by giving vaccines to mothers who hopefully
will pass immunity along to their fetuses.
"This is not science
fiction. Everything I've told you has a longstanding history to it," McCune
said. "The Gates grant allows me and others to take existing dogmas and
paradigms and throw them out the window."
Not all the projects take
a high tech approach to fighting disease.
Some scientists are
looking at more practical considerations such as the way existing disease
fighting solutions are applied, like Teun Bousema, an epidemiologist at the
London School of Hygiene and Tropical Medicine and Radboud University Nijmegen
Medical Centre in the
Bousema want to work
toward eliminating malaria in African villages by targeting all the
interventions — from spraying insecticides to installing bed nets and killing
mosquito larvae — around the people who get bit the most. He learned with his
earlier Gates grant that those people can be identified through blood tests.
Up to this point, most
malaria prevention and treatment has focused on the most vulnerable populations,
such as children, but Bousema said that approach will never lead to elimination
of the disease.
Humans and mosquitoes are
both required for malaria to spread, so the approach has to be targeted and
thorough.
"Some critics may
question whether this is cost-effective," said Bousema, acknowledging that
his approach may be costly per person but he theorizes they would only need to
target a few households to effectively help a whole village.
His idea could be applied
to any new malaria-fighting tool that is developed. If a new vaccine is
developed to block malaria transmission, it would likely be impossible to give
it to everyone in
By Associated Press |
Tuesday, July 19, 2011
Boston-based Gay &
Lesbian Advocates & Defenders sued Gilsum this month on behalf of AIDS
Services for the Monadnock Region to stop the town from taking Cleve Jones
Wellness House for not paying property taxes. Five people are living in the
home.
GLAD attorney Ben Klein
said Tuesday the group home is tax exempt and shouldn’t have to pay the taxes.
He said the home failed to
file its application for the exemption and that when it finally did, the town
refused to approve a late application, though it routinely granted exemptions to
nonprofits that file late or not at all.
"It’s an egregious
violation of constitutional equal treatment," he said.
The town’s lawyer, Gary
Kinyon, couldn’t be reached Tuesday. He did not immediately respond to a
voicemail message at his law office.
Klein said GLAD filed its
suit in Cheshire County Superior Court seeking immediate relief since the town
planned to take the property this week. Last week, the town agreed to take no
action to have the deed transferred to the town until the lawsuit is settled.
The group home and town
have had legal differences in the past, said Klein.
GLAD sued Gilsum in 2008
after the town put up roadblocks to Cleve Jones Wellness House operating on the
site of a former group home for girls removed from their homes by the state due
to abuse, neglect or stresses the family could not handle, according to Klein.
The reaction to people
with HIV, AIDS and Hepatitis C living in town was based on fears and
stereotypes, he said.
"The town imposed
conditions on who could live at the house," Klein said.
They settled the case and
most of the restrictions were removed, he said.
The new lawsuit claims the
town’s selectmen are discriminating against the home by refusing to grant its
applications for tax exemptions if not filed or filed late. Gilsum always
treated as tax exempt property by the other charitable organizations in town,
according to the lawsuit.
"For example, the
American Legion did not file an application in the years 2004-2009 and the
Gilsum Congregational Church did not file an application in the years 2005,
2007, 2008 or 2009. Yet, Gilsum treated their real property as tax exempt. In
addition, all charitable organizations in Gilsum regularly filed the application
late, sometimes as late as November and December of the tax year," the
lawsuit said.
The selectmen have the
option of approving late applications.
The lawsuit said the
minutes of the Nov. 29, 2010, selectmen’s meeting show that after AIDS
Services executive director Susan MacNeil questioned the differential treatment
of her organization and the Congregational Church and American Legion, the board
voted after she left not to tax the church and legion.
The lawsuit claims the
church and American Legion then filed applications at the board’s request.
AIDS Services did not file
an application in 2007 because its executive director mistakenly believed the
tax exemption was automatic, not something that must be filed annually, the
lawsuit said. It was filed one month late in 2008 and three days late in 2009.
The lawsuit wants the
court to find AIDS services is not liable for taxes for those three years and
wants a refund of the $11,559 in taxes and interest AIDS Services paid the town
last year.
The lawsuit said AIDS
Services had to borrow the money to pay the 2007 taxes and has been unable to
repay the loan. The lawsuit said AIDS Services cannot afford to pay the 2008
taxes and got a notice the town was going to take the deed for failure to pay on
July 21.
By Linda Fugate PhD
Created 06/28/2011
Three decades after the
first diagnoses of AIDS, symptoms of premature aging have appeared in patients
who were once afraid they would never live long enough to see signs of old age.
Lisa Leff of Associated Press reported that
Dr. Malcolm John, who
directs the
Dr. Lauren Malaspina and
colleagues in The HIV Neurobehavioral Research Programs (HNRP) Group performed a
study of cognitive function in older HIV-infected individuals. These authors
noted that more than one quarter of individuals living with HIV/AIDS in the
Malaspina and coauthors
defined successful cognitive aging (SCA) as the absence of neurocognitive
deficits, determined by a series of tests. These researchers tested 74
HIV-infected individuals with a mean age of 51 years, and a mean estimated
duration of infection of 17 years. The results indicated that only 32 percent of
this sample had successful cognitive aging. This is comparable to results from
studies of much older individuals without HIV infection. The researchers found
no correlation between SCA and demographic composition, HIV disease severity,
treatment factors, other illnesses, or history of substance abuse.
“The most consistent
finding from this study,” Malaspina reported, “was that SCA was associated
with a variety of beneficial everyday functioning outcomes.” The SCA group had
better medication adherence, lower rates of decline in activities of daily
living (self-reported), lower lifetime rates of depression, and superior
abilities to deal with health care providers. Malaspina recommended further
research to prevent early cognitive decline in HIV/AIDS patients.
References:
1. Lisa Leff, “Long-term
HIV survivors face age-related problems early”, Austin American-Statesman,
June 13, 2011.
http://www.statesman.com/news/nation/long-term-hiv-survivors-face-age-re...
2. Malaspina L et al,
“Successful cognitive aging in persons living with HIV infection”, Journal
of Neurovirology 2011; 17: 110-19. http://www.ncbi.nlm.nih.gov/pubmed/21165783.
Reviewed June 28, 2011
Edited by Alison Stanton
Linda Fugate is a
scientist and writer in