Would universal testing of the general population give us more
accurate data about the rate of new infections?... and even
data about people exposed but don't get infected?... , data
that would help people who do get infected.
http://preventionjustice.org/materials
CHAMP
Community HIV/AIDS Mobilization Project HHS Watch
AIDS Foundation of Chicago
May 2008
SPECIAL ISSUE
PREPARING FOR THE NEW U.S. HIV INCIDENCE ESTIMATE
Talking Points for Community Organizations
AIDS Foundation of Chicago (AFC)
Community HIV/AIDS Mobilization Project (CHAMP)
With thanks to National Association of State and
Territorial AIDS Directors (NASTAD)
Since 1994, Centers for Disease Control and Prevention (CDC)
has estimated that 40,000 new HIV infections occur each year
in the United States. This figure is known as incidence,
while the overall number of people living with HIV is known
as prevalence. The AIDS community has been waiting for an
updated incidence estimate, knowing that it is unlikely that
incidence has remained the same for 14 years.
In November and December 2007, national media outlets
confirmed that CDC has developed a new incidence estimate
that might be as high as 60,000 infections per year, but was
delaying publication of this number in order to have it
appear first in a peer-reviewed medical or scientific
journal. CDC has now removed the 40,000 estimate from its
website.
Some sources are now speculating that the numbers will be
released in early summer, while others believe they will not
be announced until after the November election. Clearly, the
release of new incidence numbers will be news. The
announcement serves as an op****tunity to highlight key
issues in the epidemic in the United States and in our local
areas. It also means that there may be backlash from
conservative politicians and others opposed to
evidence-based HIV prevention who will claim that prevention
has "failed." Therefore, it is imperative that we offer
clear explanations to our constituents, clients and
sup****ters.
CDC has said they will alert members of the AIDS sector at
least two days before a new incidence figure is made public,
which will not allow much time for preparation. For this
reason, AFC and CHAMP recommend that organizations prepare
clear, concise talking points well in advance of this
announcement. Below, you will find general information and
talking points that may be helpful. For more information,
contact Coco Jervis, CHAMP Director of Policy
and Leader****p Development, at
212 937-7955 x50 or
coco at champnetwork.org
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I. Introduction: Reframing the debate
The release of the new incidence estimate is an op****tunity
and challenge for our organizations.
For example, we may be contacted by press or
politicians who see an increase in
incidence as proof that "prevention doesn't work."
We know that prevention efforts work, and also that our
efforts have been hampered by a lack of funding for
education and interventions, research into new prevention
options, and community infrastructure challenges.
The amount of funding has not gone up to match the number of
people in need of services -- those infected and at risk for
infection. In fact, adjusted for inflation, prevention
funding has declined each year since 2001.
Thus, we can and must reframe the debate that may be sparked
by the new incidence estimate.
The talking points below will help with that reframing. For
example, they show that the CDC has stated that the main
obstacle in meeting its strategic goal of reducing HIV
incidence by 50% was a lack of funding.
Overall, we believe that an effective way to communicate
about the new figures is to frame the announcement in the
larger context. We believe that the massive challenge of the
AIDS epidemic in our nation requires a strong, sustained and
coordinated national strategy. We can reframe the discussion
on incidence to aim the gaze of the public and policymakers
upward to state and federal responsibilities to fund and
coordinate HIV/AIDS prevention efforts.
An example of framing the larger context:
"We don't know whether infection rates are rising or
they've just been higher than we thought... But either
way, this shows that prevention efforts are
insufficient."
Julie Davids, CHAMP Executive Director,
New York Times, December 2, 2007
In framing the larger context, we must resist the impulse to
assign blame to individuals or inadvertently play into
stereotypes that further stigmatize at-risk individuals and
communities. For example, if a re****ter asks, "How come
young people are still taking chances when we've known for
decades how HIV is transmitted?," we may think of our daily
prevention outreach efforts and reply, "Young people think
they are invincible, they think they are
superman. Peer-based education led by young people is the
best way to help educate youth about the realities of HIV
and ways to prevent transmission." Although this response
may reflect what we've noticed in our work, and makes a
great point about peer- led education, it feeds into the
stigmatization of young people by
4
labeling them as careless. It also means we may have missed
an op****tunity to aim upward in our language and critique. A
way to reframe the question to speak out for more resources
for our work could be to say:
"Funding cuts to our programs prevent us from offering
enough of the peer-led education and sup****t that helps
young people make healthy decisions. Meanwhile, the
federal government continues to sup****t misleading
abstinence-only education programs that forbid offering
accurate information about the role of condoms for
young people who may be ***ually active."
Others may use the release of the new estimate as an excuse
to call out for the end of prevention efforts, saying we
should re-direct all funds to testing, treatment and care.
Again, we suggest aiming upward and frame the broader
context by responding that, "the worst epidemic the world
has ever known requires coordination and resources for our
response. We need a national AIDS strategy that understands
that testing, prevention, treatment and care are all
connected, and that doesn't pit us against each other to
fight over scarce resources when all parts are necessary to
control the epidemic and allow people to have healthier
lives."
And of course, it is very im****tant to use these
op****tunities to speak out in very specific ways about the
challenges your organizations are experiencing because of
funding cuts. Please contact us if you'd like to practice
these points to help them be as compelling as possible to
outside ears.
II. Talking Points on What We Know and Don't Know Right Now
about the Incidence Estimate
How the New Estimates Were Derived:
. CDC funded 34 states and cities to conduct incidence
surveillance and began collecting data in 2005.
. CDC used data from 19 states in its mathematical models to
update the annual estimate of new infections. (It should
be noted that CDC has cut incidence surveillance funding
by almost $3 million and dropped the number of funded
sites to 25).
. The estimates are based on both actual HIV testing and on
statistical techniques called "modeling."
What We Think the Data Will Show:
. There are more people becoming infected with HIV on an
annual basis than was believed previously.
. The number of new infections over the past decade has
likely gone up and down from year to year.
. These estimates are based on the best available
information and on modeling but
5
the incidence numbers remain far from exact.
. HIV incidence or the number of persons recently infected
with HIV is very helpful in predicting where the epidemic
is headed which in turn may allow for better targeting of
scarce HIV prevention resources.
What the Data Will Not Show:
. This does not necessarily mean that more people are living
with HIV/AIDS in the United States. CDC has not revised
its estimate of HIV prevalence since 2003 when it
calculated that 1 million to 1.2 million Americans are
believed to be living with HIV/AIDS.
. This does not mean that there is suddenly a large influx
of new cases in 2008. The estimate of the number of people
newly infected on an annual basis likely went up and down
from year to year.
What This Means Relative to Current HIV Prevention Efforts:
. CDC prevention has not been adequately funded to
sufficiently reduce the number of new infections.
o Prevention funding makes up only 3% of domestic
federal HIV/AIDS spending.
o The amount of funding has not gone up to match the
number of people in need of services -- those infected
and at risk for infection. In fact, adjusted for
inflation, prevention funding has declined each year
since 2001.
o State and local HIV prevention cooperative agreements
have been cut by $26 million from FY2003 - FY2007 and
may be cut by an additional 1.747% or $5 million in
FY2008.
o The only new resources ($45 million) have been for HIV
testing expansion rather than for interventions to
reduce the risk of infection for high-risk
individuals.
. When given sufficient resources and not hindered by
political or legal impediments, successes are achieved.
o Perinatally acquired (mother-to-child transmission)
HIV cases decreased by 95% from a peak of 954 cases in
1992 to an all-time low of 48 cases in 2004.
o In communities where access to sterile syringes is
sup****ted, transmission of HIV in injecting drug users
has declined as a pro****tion of all cases by mode of
transmission. Decreases have also been do***ented
among the *** partners and children of injection drug
users.
o There has been a drastic decrease in HIV/AIDS
mortality due to testing and treatment.
o Research has shown that prevention programs have
averted between 204,000 and 1,585,500 HIV infections
between 1978 and 2000.
What Will Be Included in the New Incidence Estimate?
. According to press re****ts, CDC may likely estimate that
55,000 to 60,000 HIV infections occurred in the U.S. in
2005.
. This would be a 35% to 50% increase over the
longstanding estimate of 40,000
6
annual HIV transmissions.
. In its briefing in December, CDC said the primary data
source for the new national estimates was new laboratory
analysis conducted on HIV-positive blood samples in 19
jurisdictions using the STARHS method, which can identify
recent infections from longstanding ones.
. CDC researchers may include regional breakdowns in
their analysis.
. It is unlikely that there will be further breakdown by
gender, race or ethnicity in this first analysis.
. There will be a later release of a second data set
and analysis, including 2006 data,
at the end of 2008 or later.
. Data from 2007 and trends analysis are slated for
release in 2009.
. The CDC will not be able to draw any conclusions about
whether incidence is going up or down, and in which
populations, until after at least three years' worth of
the new incidence data are available in 2009.
o Until then, we cannot say whether the new, higher
incidence estimate is merely a result of more
sophisticated estimating methods or a sign of climbing
rates of transmission (or possibly both).
III. Talking Points on the Context of HIV Incidence in the
United States
The HIV epidemic in the U.S. is even worse than
previously thought.
. The estimates clearly sup****t one sobering and alarming
conclusion: more aggressive efforts based in evidence must
be undertaken immediately to slow HIV transmissions in the
U.S.
Health disparities persist in populations
dispro****tionately affected by HIV/AIDS.
. As early as 15 years ago, the numbers showed an epidemic
growing steadily among African- Americans and Latinos
through unprotected ***ual contact and syringe sharing.
. Lacking urgency, national efforts have failed tragically
to make any measurable difference halting the force of
these inequitable trends.
o Today, 70% of all people known to be living with
HIV/AIDS in the U.S. are people of color.
o Infections among young African American men increased
by 80% from 2001-2005.
o The pro****tion of HIV/AIDS that is among women
(predominately black and Latina) grew from 11% to 25%
between 1990 and 2005.
o Gay, bi***ual, and other men who have *** with men --
of all races and ethnicities -- continue to comprise
the single largest group affected by HIV/AIDS, with no
abatement in sight.
. Immediate action and resolve is needed to
dramatically expand the availability of
7
science-based interventions in order to come up with
innovate, more effective ways to lower new
infections. Without a truly "heightened national response"
that addresses the socio-economic conditions that fuel HIV
transmission, the disparities will only continue to widen.
Failed federal public health policies are complicit in
allowing high rates of HIV transmission to rise and persist
in the U.S. Quite simply, failure to invest in proven
interventions has allowed HIV rates to increase.
. Not only has the federal government failed to make HIV
prevention a priority but ideological agendas have
prevented scarce federal funds from sup****ting proven
strategies such as needle exchange, comprehensive ***
education, condom promotion, and ***ually explicit and
age- appropriate messages especially for youth and gay men
of all race/ethnic backgrounds and age groups.
. A scale-up in HIV prevention investment must be
accompanied by a commitment to the strategies best
positioned to achieve specific, measurable goals.
Pitting prevention against other areas of the AIDS response,
such as treatment and care, will further harm our efforts.
. Effective efforts to stem the epidemic require a
coordination and integration of efforts, rather than
creating "silos" of services forced to compete with each
other for scarce funding.
. HIV prevention, treatment and care services overlap and
complement each other. For example, ensuring that
HIV-positive people receive safe, affordable housing helps
them adhere to their treatment regimes, receive nutritious
foods and adequate rest, and lower their viral load, which
decrease the chance of HIV transmission, and can help them
connect to prevention services.
Urgency is needed at the highest level to invest in
HIV prevention strategies.
. CDC's own 2001 HIV Prevention Strategic Plan, which set
the im****tant goal of reducing new HIV infections to a
level of 20,000 per year by 2005 (a 50 % reduction),
quietly expired two years ago with scarcely any
progress. The CDC recently extended the 2001 plan but
lowered the goal, seeking now to reduce new infections by
10 % by 2010 -- a goal ostensibly resigned to infection
rates 35% higher than 2001, at best.
. Even this un-ambitious goal will be difficult to achieve
under the weight of another $1 million funding cut slated
for HIV prevention in President Bush's FY09 budget and a
decade of divestment in behavioral interventions and
surveillance.
The U.S. must develop a comprehensive and measurable
national AIDS strategy.
. The U.S. requires other countries to develop national AIDS
plans as a condition to receive AIDS relief funding -- a
standard our own nation ignores. It's time the U.S. took
an outcomes-based approach to HIV/AIDS and developed a
single and
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comprehensive plan to address the domestic epidemic.
. Developed with community stakeholder involvement, the plan
should include measurable goals, objectives, and
accountability mechanisms. In fact, Congress and the
American people should demand annual progress re****ts on
efforts to implement the plan, which must include
provisions to decrease annual HIV infections.
. More information on the call for a National AIDS
Strategy is available at
http://www.nationalaidsstrategy.org.
The new HIV incidence data will likely have ripple effects.
. New incidence data call into question other data
assumptions such as HIV prevalence figures (the estimated
number of people living with HIV/AIDS in the U.S.) The
most recent figures for the end of 2003, estimate between
1 million and 1.2 million people are living with HIV/AIDS
in the U.S.
. Researchers may need to re-evaluate these estimates as
well as the number of HIVpositive people not in HIV
medical care and those who do not know their HIV status.
HHSWatch, a watchdog newsletter from CHAMP, monitors and
re****ts on activities related to HIV prevention at Health
and Human Services agencies, including CDC, NIH, HRSA and
SAMHSA.
HHSWatch is a resource for community members, policy
advocates, researchers and anyone interested in more fully
understanding and tracking the committees, panels and
administrators whose recommendations and decisions affect
our work.
HHSWatch is committed to providing an outlet for those
concerned about infringements upon science-based HIV
prevention and treatment, and will respect your wishes for
confidentiality. If you are interested in contributing
information or suggesting a story, please contact
champ at champnetwork.org
HHS Watch
COMMUNITY HIV/AIDS MOBILIZATION PROJECT (CHAMP)
32 Broadway Suite 1801
New York NY 10004
tel 212 937-7955 x10
http://www.champnetwork.org
http://preventionjustice.org/materials
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