[Viva] FW: CTAC Daily Info - October 7

[Tami S.]

In this e-mail:
1.    BMS: ONE LIFE-Official Launch
2.    Bill S-10 hurts people, families and public coffers
3.    Race Against Time: Activists Call for More Research on Aging and HIV




1.BMS: ONE LIFE-Official Launch

On behalf of Chantal Hurtubise and all the Sales Team at Bristol-Myers
Squibb we would like to let you know that we are very proud to officially
launch the Phase III of the ONE LIFE campaign today.

This year, Bristol-Myers Squibb Canada has evolved the ONE LIFE program to
better reflect the insights and advice shared with us by key stakeholders.
The important feedback we received from members of the HIV/AIDS community,
AIDS Service Organizations (ASOs) and clinicians across the country, coupled
with the latest HIV/AIDS data and our website evaluation study, will help us
to ensure that ONE LIFE remains up to date, impactful and effective.

We would like to thank the individuals featured in the ONE LIFE videos for
their participation and support for this initiative. Most importantly, we’d
like to express our sincere gratitude to people living with HIV for their
involvement in the development and review of content, particularly those who
have so eloquently shared their personal thoughts and stories in the
enclosed materials.

A number of activities are planned as part of this year’s ONE LIFE efforts.
Our Get Tested message has been advertised during the Pride Festivals in
Montreal, Toronto and Vancouver. Additionally, http://www.onelifetolive.ca
supports the messages “Get Tested” and “Get Care”, and offers links to ASOs
and clinics throughout Canada, via ASO411.ca.

Recently posted on http://www.onelifetolive.ca for healthcare professionals
is the HIV treatment readiness program “A Good STAART to HAART”. Developed
by Dr. Louise Balfour of Ottawa Hospital, this web-based tool is designed to
help healthcare providers assess and increase their HIV patients’ HIV
treatment readiness and optimize their HIV treatment adherence.

We invite you to go online to see the new educational videos that we have
developed along with our new website http://www.onelifetolive.ca. Please
note that we will be giving you or sending you a complete ONE LIFE toolbox
with all the elements of the campaign. You will have the option of ordering
additional copies of the material at your convenience.

Thank you for your ongoing interest in our efforts in HIV prevention,
treatment, support and care. We look forward to continuing to work with you.

Your partners at Bristol-Myers Squibb

Chantal Hurtubise
Bristol-Myers Squibb

And

Line Desjardins
Bleublancrouge


2.

Bill S-10 hurts people, families and public coffers Over 200 experts call on
Senators to be sensible on crime
http://www.aidslaw.ca/publications/interfaces/downloadFile.php?ref=1722

News Release / Communiqué

For immediate release / Également disponible en français

Toronto, 6 October 2010 — Over 200 frontline organizations, public health
professionals, researchers and experts — working with people who use drugs
and those vulnerable to HIV infection — have endorsed a letter calling on
the federal government to get sensible, rather than tough on crime.

This action comes as the Senate Standing Committee on Legal and
Constitutional Affairs deliberates this week on whether to hold hearings on
Bill S-10 (an Act to amend the Controlled Drugs and Substances Act and to
make related and consequential amendments to other Acts). The letter —
endorsed by the Committee’s own former cochair, Senator Pierre Claude Nolin
— urges Committee members to respond to the public health problem of drug
addiction by focusing on scientifically proven approaches instead of
demonstrably ineffective ones, such as mandatory minimum sentences. If the
Committee chooses not to hold hearings, crucial expert testimony may never
be heard.

“As currently drafted, Bill S-10 would target the most marginalized people
living with addictions, whose only engagement with trafficking is often
related to their drug dependence,” said Patricia Allard, Deputy Director of
the Canadian HIV/AIDS Legal Network. “Additionally, a Canadian study found
that over 80 percent of federally incarcerated women are mothers of minor
children. Are child-service agencies prepared for the number of legal
orphans likely to land on their doorsteps should S-10 see the light of day?”

“The 30-year war on drugs waged by the U.S. government, and its disastrous
experiments with mandatory sentencing, offer all the evidence we need that
incarcerating people for minor drug offences is counterproductive to
addressing the issue of addiction and is detrimental to public health,”
stated Walter Cavalieri, Chair of the Canadian Harm Reduction Network.

According to Ms. Allard, “evidence shows that imprisoning people who inject
drugs fans the flames of Canada’s HIV epidemic. The HIV prevalence rate in
Canadian prisons is at least 10 times that found in the population as a
whole.”

3.

Race Against Time: Activists Call for More Research on Aging and HIV by
David Evans
http://www.aidsmeds.com/articles/hiv_charpa_aging_2042_19208.shtml

With the ranks of HIV-positive people older than 50 growing rapidly, AIDS
activists with the Coalition for HIV and Aging Research and Policy Advocacy
(CHARPA) are demanding that the National Institutes of Health (NIH) devote
more attention and resources to the issue of aging and HIV. Will the NIH
respond, and will it respond in time?

[cid:image001.jpg at 01CB662B.6F705210]Think of old age. Chances are that
various forms of disease and disability come to mind. Brittle bones, the
relentless exchange of muscle for fat, weak hearts, and forgetfulness—while
all of these conditions are unpleasant and unwelcome when they strike, they
are almost expected by the time people reach their 70s or 80s. What if,
however, these health issues begin to happen during a person’s 40s and 50s?
That’s exactly what researchers fear is occurring in people with HIV—and we
don’t fully understand why.

Is It Aging or Something Else?

The data emerging from recent scientific conferences paint a troubling
picture—they increasingly suggest that diseases common among the elderly are
now occurring at a much earlier age in people with HIV. Rates of heart
disease, bone loss, cancer and cognitive decline are many times higher in
HIV-positive people in their 40s and early 50s, compared with HIV-negative
people of the same age. In addition, several immunological alterations
characteristic of HIV infection, notably declines in the immune system's
ability to mount effective responses to disease-causing pathogens, are
similar to immunosenscence: gradual deterioration of the immune function
brought on by aging.

Is this accelerated aging or something else? There are believers that it is,
and there are skeptics.

While no one disputes there’s a lot more disease and disability occurring in
people with HIV than their HIV-negative peers, the skeptics are cautious
about calling this accelerated aging. Rather, they argue that what looks
like aging is a combination of other factors, including: immune system
dysfunction, a higher prevalence of cancer-causing viruses, increased rates
of smoking and drug use, toxic effects of some older antiretroviral (ARV)
drugs, and constant inflammation due to the presence of the virus. Take away
these factors, the skeptics suggest, and a person could probably live a
next-to-normal lifespan.

While the believers agree whole heartedly that these factors greatly
contribute to the conditions plaguing an aging population of people with
HIV, they also insist that many of the diseases are occurring in people who
never smoked, or never took the more toxic HIV drugs, or didn’t wait too
long to start ARV therapy.

Jeff Taylor, a longtime HIV activist from Palm Springs, California, is a
believer. He thinks that some type of accelerated aging is occurring, and
he’s not pleased at the way that some scientists are approaching the
problem. “My response to those arguments is, ‘If it looks like a duck and it
quacks like a duck, chances are it is a duck,’” he says. “That’s got to be
your best assumption, and you start there, and then disprove it if you can.”

Proving the Point

That’s exactly how Taylor and a group of activists he belongs to—called the
Coalition for HIV and Aging Research and Policy Advocacy (CHARPA)—are hoping
that the National Institutes of Health (NIH) will begin to approach the
problem: Assume that aging itself plays a role, and then set out to better
understand, and then disprove the theory.

The consequences of not following this approach could be serious indeed. The
Centers for Disease Control and Prevention (CDC) estimates that more than
half of all people with HIV will be older than 50 by 2015. This, activists
say, makes them feel like they’re in a race against time.

Jules Levin of the National AIDS Treatment Advocacy Project is another
CHARPA member who took an early interest in the topic. He experienced an
HIV-related bone fracture three years ago and began haranguing researchers
about the subject at that time. Levin thinks we are woefully unprepared for
an aging population.

Levin and Taylor began pushing researchers more than a decade ago to quickly
respond to the body fat distribution problems that were starting to show up
in people with HIV. Taylor feels that researchers turned their attention too
slowly toward the condition, ultimately dubbed lipodystrophy. By the time we
figured out what did and didn’t cause it—we’re still not entirely clear why
people are accumulating such large amounts of fat in their guts—tens of
thousands of people had developed the condition.

Taylor laments that there’s still no approved drug to treat fat accumulation
and the only one near approval, Egrifta (tesamorelin), is “lackluster.”

“But at least with lipodystrophy there’s now a kind of a checklist of what
these things are,” he reflects. Not so with aging.

These concerns led Lei Chou of the Treatment Action Group (TAG) and two
other members of CHARPA to hand-deliver a letter to Anthony Fauci, MD, the
director of the National Institute of Allergy and Infectious Diseases
(NIAID)—the institute at the NIH responsible for the bulk of HIV research
dollars—at a NIAID council meeting September 20. The letter begs NIAID and
other NIH institutes to boost both the priority and funding of aging-related
HIV research.

“Right now [NIAID is] just paying lip service to HIV and aging by given it
an ‘awareness day,’” claims Chou, referring to a September 9 press release
from the institute dedicating September 18, 2010, National HIV/AIDS and
Aging Awareness Day.

In essence, the letter from CHARPA calls on the NIH to take several actions.
First, CHARPA would like the NIH to create a new funding mechanism in the
2012 budget that sets aside discrete money to study aging and HIV.

Second, CHARPA asked the NIH to issue a Request for Information and Ideas
(RFI) on aging and HIV to the research community and to set up a special
review panel that has expertise across all relevant disciplines in order to
streamline the grant making process.

Third, CHARPA wants the community to have a prominent role in the research
prioritization and review process.

Finally, CHARPA would like the NIH to establish a new cohort study that
includes enough older people with HIV and enough HIV-negative people—who are
similar in demographics and other key factors to the HIV-positive
participants—to answer the most fundamental questions about HIV and aging.

This last point is particularly vital. It is perhaps one of the only ways to
determine whether accelerated aging is part of the problems that researchers
are beginning to document—and that many people with HIV are suffering
through.

If research fails to illuminate how much various factors are contributing to
the increased rates of diseases and disorders in people with HIV, the
prospects aren’t good for the people Taylor knows.

“I live in Palm Springs,” he says, “which is kind of the epicenter of aging
gay men who have survived long enough to tell the tale.” When asked to
explain the ailments some people are already suffering from, he says, “It’s
everything, the whole gamut: cancer, heart disease
the whole lipodystrophy
spectrum
and neurocognitive decline.” This last item, he asserts, “that’s
what terrifies the average aging person with HIV more than anything. Nobody
wants to lose their mind.”

A Step in the Right Direction?

“NIAID’s research priorities are tightly focused on prevention, a vaccine
and the cure,” Chou says. “Of course we want all of these things, but the
medical complications and comorbidites of people living and aging with HIV
seem to have been put on a back burner.”

Levin agrees: “They did not notice it. It got past them. They were
preoccupied with everything else.”

Levin hears regularly from researchers who are interested in doing work on
aging and HIV but who say the NIH turns down their requests for funds. When
he asked “a top government official” about the accusations, he recalls, the
response he got was, “Oh these researchers, they complain about everything.
They just want their studies funded.”

A spokesperson for the Office of AIDS Research (OAR), which coordinates the
HIV research programs across the different NIH institutes, insists that the
OAR has actually been focused on the issue for quite some time and that NIH
funding has already begun to bear fruit, including a large cohort study out
of the Veterans Administration.

What’s more, the spokesperson said NIAID is currently working on a letter
responding to CHARPA’s concerns, and that OAR would be glad to meet with the
community at any time.

This echoes the experience of Sharon Maxwell, an activist from Kansas City
who attended the NIAID council meeting along with Chou. “After we gave the
letter to [Anthony] Fauci and Carl Dieffenbach [the director of the Division
of AIDS at NIAID], Carl came back and said, ‘You all have some very good
points in this. I do want to have a meeting with you,’” Maxwell recounted.

“From the time that we handed him the letter it was only 15 or 20 minutes
before he was back saying, ‘Yes, let’s have a meeting,’” she continues. “I
was very pleased with that.”

When asked what he would consider to be a sign of progress, Chou says, "I
think one early indication that they are taking this seriously would be
demonstrated by the research network recompetition process that'll end by
Feb. 2011. The new network leadership must include experts outside of
virology, and be composed of researchers from other
disciplines as well as
more emphasis on immunology. That would be a good indication.”

The OAR representative pointed out that the office has sponsored two
meetings dedicated to the topic in the past year, and further stated that,
“We are in the midst of the development of the fiscal year 2012 budget, and
OAR plans to set aside funds to stimulate additional research in this area.”

What Comes Next?

CHARPA was born at the HIV Research Catalyst Forum, a conference held in
April 2010 to rebuild and reinspire an activist community focused on HIV
research advocacy. The conference was supported by funding from OAR and the
pharmaceutical industry and cosponsored by TAG and other advocacy groups.

Though CHARPA has no official leaders and belongs to no specific agency, TAG
has continued to sponsor the group’s activities and has dedicated the time
and energy of its staff, including Chou. He hopes that the letter to NIAID,
and the research it could inspire, will be just a first step in addressing
the needs of an aging population of people with HIV.

In addition to the letter to NIAID, and plans for how to get the most out of
a meeting with the staff of NIAID and OAR, CHARPA also intends to work on
other areas, such as disease prevention and care guidelines. It will also
explore how Ryan White programs and health care reform will affect the aging
HIV population and whether or not safety nets will be there as people’s
needs for ancillary care grow.

The group currently has more than 50 members across the United States. “I’ve
been very encouraged by the community response to CHARPA so far, and I think
there is a lot of interest and motivation out there,” Chou says.

Maxwell’s motivation for joining CHARPA was two-fold. While she’s been
involved in HIV research advocacy for years, it’s also personal.

She was diagnosed with HIV in 1994 and had just 40 CD4 cells at the time of
her diagnosis. She says she’s been remarkably stable ever since. At 63 years
old, however, she is beginning to experience the effects of age and HIV.
“The frailty, the weakness in the legs, the lipid disorders
all of that is
starting to show up now.”

Bob Munk, an HIV-positive activist from Santa Fe, says he’s not a “sky is
falling” type of activist, but the issue has particular urgency for him.
While he’s deeply grateful for the extended years that ARVs have given him,
he insists that quality of life is equally important—and something that
research has not yet conquered. “I have osteoporosis. I have CNS symptoms.
And routinely those get kind of shrugged off as, ‘Well you’re aging,’” he
complains.

“Yeah right!” he responds. “I’m almost 60, and I deserve better.”

*David Evans is a member of CHARPA. CHARPA is a coalition of activists and
people living with HIV that has formed to: 1.) expedite research about the
intersection of aging, inflammation and HIV; 2.) ensure that the community
has a voice in developing an aging and HIV research agenda; and 3.) advocate
for policies that improve clinical care and social safety nets for older
people with HIV. Members meet via monthly conference calls to share
information and develop advocacy strategies. CHARPA is not affiliated with
any other group. If you have health research advocacy experience and would
like to learn more about the group, click
here<http://groups.google.com/group/aginghiv?lnk=>.




Béatrice Cardin
Organizational Development and Communications Manager Canadian Treatment
Action Council (CTAC)
Phone/Fax:  (416) 410-6538
ctac at ctac.ca<mailto:ctac at bellnet.ca>
www.ctac.ca<http://www.ctac.ca/>

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