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Thomas Eck
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Landmark
Global Survey Shows HIV-Positive Patients
Still Fear Stigma
More
than 25 Years After the Start of the
Pandemic
Side
Effects Remain Major Barrier to Treatment
IAPAC
Issues Urgent Global Call-To-Action to
Increase HIV Literacy
MEXICO
CITY, 4 AUGUST 2008 – Results from the groundbreaking
AIDS Treatment for Life International Survey
(ATLIS), which polled nearly 3,000 HIV-positive
patients from 18 countries, show an urgent
global need for improved HIV and AIDS understanding
and increased dialogue about quality of life. Although
great strides have been made in HIV education,
the survey indicates people living with HIV
and AIDS around the globe still live in fear
of the societal stigma that surrounds the
disease, and some are so concerned about
side effects that they have chosen to stop
their treatment regimens. These and
other ATLIS findings were released today
by the International Association of Physicians
in AIDS Care (IAPAC) at AIDS 2008 (the 17th International
AIDS Conference) in Mexico City, Mexico,
and were simultaneously published in the
July/August 2008 issue of the Journal
of the International Association of Physicians
in AIDS Care (JIAPAC).
In
light of the ATLIS findings, IAPAC encourages
a global call-to-action urging the HIV community
to: 1) increase education and discussion
to ensure patients are better informed about
their treatments and can assist in making
decisions about their HIV therapy regimen;
2) promote dialogue around patients' quality
of life as it relates to treatment potency,
dosing strategies, side effects and tolerability;
3) address non-clinical barriers to HIV treatment
initiation and adherence, including stigma,
discrimination and cost; and 4) advance culturally
sensitive HIV prevention programs.
People
Still Hiding HIV Status Because Of Discrimination
and Stigma
The
ATLIS findings suggest that stigma remains
an issue for HIV-positive patients, particularly
with regard to disclosure of their HIV status. More
than half of survey respondents (54 percent)
are “very” or “somewhat” concerned about
others knowing their HIV status, with 83
percent claiming this is predominantly due
to concern of social discrimination and stigma. They
are also concerned about specific repercussions
including the loss of family and friends
(41 percent), the impact on their ability
to establish future relationships (37 percent),
the risk of losing their job (36 percent)
and the impact on their reputation (36 percent). African
respondents had fewer concerns about revealing
their condition as opposed to respondents
in other regions. Asian/Pacific respondents
were more concerned about the risk of losing
family and friends, as well as the potential
impact on their current relationships. Respondents
in North America were most concerned that
their HIV-positive status could be damaging
to their reputation.
Treatment
Advances Applauded But Side Effects Remain
a Significant Challenge
Study
results show that concerns about side effects
may prevent patients from seeking treatment. Overall,
26 percent of the respondents reported that
they had elected not to seek treatment, because
they believe that antiretroviral therapy
(ART) causes too many side effects, with
responses from Europe (42 percent) and South
Africa (29 percent) being most prevalent.
“When
the HIV and AIDS pandemic began in the early
1980s, the overarching goal of education
was to give people hope and the goal of treatment
was to prolong life,” said José M. Zuniga,
Ph.D., President/CEO of IAPAC. “Despite
the incredible strides we have made, what
this study shows is that some people are
rejecting life-saving treatments, because
they fear the side effects of the medications
that could potentially save their lives,
while others on treatment have unnecessarily
resigned themselves to live with side effects
and poor tolerability in an age where less
toxic treatment options are available. Patients
can and should now expect more from their
HIV treatment.”
While
the ATLIS results show that people living
with HIV and AIDS believe the potency and
overall efficacy of ART has been proven to
help patients live longer lives, their concern
centers around a number of short- and long-term
side effects. Thirty-four percent of
treatment-experienced respondents discontinued
their treatment primarily because they believed
it caused too many side effects. ATLIS
found that more than half of all respondents
worried that their medications will cause
one or more of the following: face or body
shape changes (58 percent), gastrointestinal
problems (54 percent), fatigue or anemia
(54 percent) and liver disease (54 percent). Respondents
in Latin America and North America voiced
significantly more concern about many potential
side effects than respondents from other
regions (P < 0.05), while African respondents
voiced significantly less concern (P < 0.05). Female
respondents in most regions, especially those
in Europe, worried more than male respondents
in their respective regions about bone loss
and face or body shape changes.
Improvement
in Global HIV Literacy Needed
Based
on the ATLIS findings, there is a strong
need for continued education on a global
level about critical HIV and AIDS topics. Overall,
69 percent of respondents said they wished
they knew more about HIV and its treatment.
This was most commonly voiced by respondents
from Latin American (78 percent) and Africa
(71 percent).
When
respondents were asked to describe how HIV
drug resistance develops, only 17 percent
accurately answered the question. Fifty-four
percent answered incorrectly or did not know
the answer and 29 percent provided only partially
accurate answers. North American (48
percent) and Asian/Pacific (20 percent) respondents
were most likely to select the correct answer
to the question, whereas African respondents
were more likely to select an inaccurate
answer or did not know (79 percent), followed
by respondents from Latin America (58 percent)
and Europe (54 percent). Previous
studies have shown a strong correlation between
a good understanding of HIV drug resistance
and improved treatment adherence.
“ATLIS
results indicate there is still a strong
need to educate HIV-positive patients and
the world around them. The findings demand
an increase in global HIV and AIDS literacy,”
said Dr. Zuniga. “It is critical that we
empower HIV-positive patients to take an
active part in the management of their disease
by educating them on the importance of adhering
to their treatment and teaching them about
the innovations in treatment that could improve
their overall quality of life.”
The
Face of HIV Has Dramatically Changed
The
ATLIS findings show that nearly half of those
patients surveyed (48 percent) reported being
in a heterosexual relationship, reinforcing
that HIV is reaching broader populations. A
third of total respondents claimed to be
in monogamous relationships. African
respondents were the most likely to be in
a monogamous relationship. Conversely,
respondents in North America (25 percent)
and Europe (21 percent) were most likely
to have sex with casual partners. Respondents
in Latin America were more likely not to
disclose their current sex practices.
About
ATLIS
ATLIS
is the largest, multi-country, comparative,
treatment awareness survey of people living
with HIV and AIDS. Its main objectives
were to:
- Evaluate and understand treatment awareness
and practices worldwide
- Assess the different social and cultural
factors that impact people living with
HIV and AIDS
- Identify how currently available treatments
affect the lives of HIV-positive people
IAPAC
worked with Ipsos Insight Health, an independent
marketing research firm, to survey HIV-positive
adults from five regions in a convenience
sample: North America (United States), Latin
America (Argentina, Brazil, Mexico and the
Caribbean*), Europe (France, Germany, Italy,
Russia, Spain and the United Kingdom), Asia/Pacific
(Japan, Korea, Malaysia, New Zealand and
Singapore), and Africa (South Africa).
ATLIS
was conducted from March through May 2008
via a combination of Internet, phone and
in-person recruitment methods by Ipsos
Insight Health. Interviews were conducted
with a total of 2,968 HIV-positive adults
(2,049 male and 919 female). To mirror
the actual population with HIV, specific
effort was made to recruit both treatment-experienced
and treatment-naïve respondents. All
respondents signed confidentiality/non-disclosure
agreements prior to initiating the survey
to ensure any information they shared would
be kept confidential in accordance with
local laws. The
questionnaire itself was translated in
local languages, and was slightly tailored
for each country to include socially acceptable
language.
The
methodology used in the ATLIS study is quantitative. Results
were based upon a convenience sample of HIV-positive
people within each of the countries of interest. Results
are summarized using percentages. Confidence
intervals are not given, however, 95 percent
confidence intervals for individual proportions
based on the global sample (n = 2,968) will
have margins of error within ±0.02. Confidence
intervals for a proportion from a specific
segment will have larger margins of error
(about ± 0.07 for n = 200 and ± 0.10 for
n = 100).
ATLIS
was made possible through an educational
grant provided by Merck & Co., Inc.,
Whitehouse Station, NJ USA, which operates
in many countries as Merck Sharp & Dohme.
About
IAPAC
With
offices in Chicago, Johannesburg, Washington,
DC and Toronto, IAPAC represents more than
12,000 physicians and other healthcare professionals
in over 100 countries. IAPAC's mission
is to craft and implement global educational
and advocacy strategies, as well as technical
assistance programmes to improve the quality
of care provided to all people living with
HIV and AIDS.
For
further information on IAPAC and ATLIS, please
visit: www.iapac.org.
###
*Caribbean
includes responses from the Dominican Republic,
Jamaica and Puerto Rico.
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