The State of HIV/AIDS Science and Treatment Literacy in the HIV/AIDS Workforce

190 Pages·2015·4.08 MB·English

When We Know Better,
We Do Better
The State of HIV/AIDS Science
and Treatment Literacy
in the HIV/AIDS Workforce
Black AIDS Institute
February 6, 2015
When We Know Better, We Do Better: Views and opinions expressed in this publication are
The State of HIV/AIDS Science and Treatment Literacy not necessarily those of the Black AIDS Institute, its
in the HIV/AIDS Workforce partners, or the funders of this publication. Views,
in the United States opinions, and comments expressed by the participants
is a publication of the are those of the particular individual speaking and
Black AIDS Institute do not necessarily represent the views and opinions
1833 West Eighth Street of other participants or the Black AIDS Institute.
Los Angeles, California 90057-4257 Publication of the name or photograph of a person
213-353-3610, 213-989-0181 fax does not indicate the sexual orientation or HIV status
[email protected] of the person or necessarily constitute an en dorse-
www.BlackAIDS.org ment of the Institute or its policies. Some photographs
in this publication use professional models for
© 2015 Black AIDS Institute. All rights reserved. illustrative purposes only.
The slogan “Our People, Our Problem, Our Solution” When We Know Better, We Do Better:
is a trademark of the Black AIDS Institute. The State of HIV/AIDS Science and Treatment Literacy
in the HIV/AIDS Workforce
Ver. 2.0 in the United States is designed for educational
purposes only and is not en gaged in rendering
medical advice or professional services. The
information provided through this publication
should not be used for diagnos ing or treating a health
problem or a disease. It is not a substitute for profes-
sional care.
The Spanish language augmentation was not
included in the original study. The Spanish language
augmentation data is included in the city, state, and
national fact sheets.
This report was made possible, in part, by the
generous support of Janssen Therapeutics, Division of
Janssen Products, LP.
Contents
4 Introduction: Biomedical Tools Alone Can’t End the AIDS Epidemic
7 Executive Summary
9 The Findings
23 HIV Science and Treatment Literacy: Why It Matters
27 Essential: An Educated, Informed HIV/AIDS Workforce
30 Urgent Action Agenda: Build Strong HIV Science and Treatment Literacy
33 Black AIDS Institute
33 Appendix
34 National Fact Sheet
38 State Fact Sheets
102 State Comparisons
132 DMA Fact Sheets
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Introduction: Biomedical Tools
Alone Can’t End the AIDS Epidemic
The late Dr. Maya Angelou said, “Do the breakthroughs—may not be enough to
bring AIDS to its knees. All the tools
best you can until you know better. in the world will not end the AIDS
epidemic unless those responsible for
Then, when you know better, do better!” using those tools understand them,
believe in them, and know how to use
them.
I can’t of them Black, almost two-thirds of This report highlights perhaps
think of them gay and bisexual men, and an the most important missing element
a more increasing number of them women. in our quest to end the epidemic in
appropriate The scientific evidence is now clear. America. As has been true for every
quote or a We have the tools we need to end the advance recorded in our long national
more fitting epidemic in America. Never before struggle with this epidemic, the HIV/
messenger have our prevention and treatment AIDS workforce has a vital role to
when I tools been this effective. As a result of play if these powerful treatment and
think of this steady advances in diagnostic science, prevention tools are to be effectively
moment in it has never been easier or cheaper to mobilized. To ensure rapid and
time in the trajectory of the HIV/AIDS learn your HIV status. The treatment effective use of these biomedical tools,
epidemic in America. regimens available today are highly the HIV/AIDS workforce needs to
Nearly 35 years have passed since effective, simple to take, and easy to possess a strong understanding of HIV
the HIV/AIDS epidemic was first tolerate, and they not only improve science and treatment and a passionate
recognized, and nearly two decades health and prevent death but can also belief in the effectiveness of the HIV/
have gone by since Highly Active stop HIV transmission in its tracks. AIDS toolkit.
Antiretroviral Therapy (HAART) With new bio-medical prevention In this report, we describe the
emerged. Only two years ago, at the tools we can even interrupt acquisition results of the largest-ever survey of the
International AIDS Conference in of the virus as well. When properly HIV/AIDS workforce in the United
Washington, D.C., scientists and used, Pre-Exposure Prophylaxis States (over 3,600 respondents from
activists, including myself, hailed the (PrEP) can reduce acquisition of HIV 44 states, the District of Columbia and
potential for ending the epidemic once by 96%. Even our surveillance tools U.S. territories), and the first survey
and for all. have improved. With geo-mapping ever of the knowledge and attitudes
Yet despite the passage of time and increasingly used to identify HIV/ of that workforce. The Black AIDS
the emergence of powerfully effective AIDS hotspots, we can identify where Institute undertook this study in
tools to fight HIV, prevention efforts the epidemic is down to the census collaboration with the CDC, the Latino
in the United States remain stalled. tract or zip code. Commission on AIDS, the National
Every year, about 50,000 people are Yet all these advances—all Alliance of State and Territorial Health
newly infected with HIV—nearly half these extraordinary biomedical Directors, Johns Hopkins Bloomberg
4 WHEN WE KNOW BETTER, WE DO BETTER
to action, and the report closes with in the HIV/AIDS field, and those most
a series of priority recommendations at risk of infection. The Black AIDS
to build strong HIV science and Institute has already developed a
treatment knowledge in the HIV/AIDS demonstrated model that shows that
workforce. But it’s also important that the HIV/AIDS workforce can learn
we don’t misinterpret the results of this stuff, retain this stuff, teach others,
this survey. For nearly 35 years, we and develop programs that link People
in the HIV/AIDS field have built an Living With HIV/AIDS (PLWHA) to
infrastructure and that investment care, help them stay in care, and help
has been a wise one. Those working high risk negatives access PrEP and
and volunteering in the HIV/AIDS other high-impact prevention tools.
field and people living with HIV/ We have a lot of work to do to close
AIDS are the ones who have gotten us the HIV/AIDS knowledge gap in the
to this point. Let’s not get it twisted. workforce. But the dividends that this
Every advancement in HIV/AIDS knowledge will pay should inspire us.
over the last 34 years, including the We really can be the generation that
scientific ones, have been driven ends the HIV/AIDS epidemic.
by the HIV/AIDS community. We Maya Angelou also said, “Whoever
are the reasons we can contemplate you are, where ever you are. Start
ending this epidemic. The HIV/AIDS there!” We can know better, and
workforce developed the first HIV we will do better. Let’s now get
School of Public Health, and Janssen prevention programs, successfully busy ensuring that our HIV/AIDS
Therapeutics. fought for research investments workforce is prepared to lead that fight.
This survey yields some disturbing that have yielded these historic
findings. Overall, the HIV science and biomedical breakthroughs, and used Yours in the Struggle
treatment knowledge of the HIV/AIDS the knowledge of the communities we
workforce is far too low. In many cases, serve to develop effective methods of
people working in HIV/AIDS appear to reaching people neglected by medical
doubt the science behind breakthrough institutions and policy makers. Phill Wilson
biomedical tools for HIV prevention, Having worked in the HIV/AIDS President and CEO
and far too many members of the field since the epidemic’s early years, Black AIDS Institute
workforce are not familiar with many I know that the HIV/AIDS workforce
of the bio-medical interventions that can help take us to the finish line. But
will play a critical role in ending the we won’t get there unless we raise HIV
epidemic. science and treatment literacy among
It’s vital that these findings spur us people living with HIV, those working
WHEN WE KNOW BETTER, WE DO BETTER 5
6 WHEN WE KNOW BETTER, WE DO BETTER
Executive Summary
The scientific evidence is clear. Low HIV Science
As a result of extraordinary advances and Treatment Literacy
in biomedical research, we now have the in the HIV/AIDS
tools we need to end the HIV epidemic in Workforce
the United States.
Survey results were concerning; on
average respondents answered only
However, biomedical tools, even the treatment issues. To assess the level of 63% of survey questions correctly—
most powerful ones, are only effective HIV science and treatment literacy in essentially getting a “D” grade on
if they are used by those who need the HIV/AIDS workforce, the Black HIV science and treatment issues.
them. The HIV/AIDS workforce— AIDS Institute collaborated with the Participants were more likely to answer
which for more than three decades CDC, the Latino Commission on basic science questions correctly
has provided essential guidance AIDS, the National Alliance of State (76%) than questions pertaining to
and support for people living with and Territorial AIDS Directors, Johns HIV treatment. The average score on
HIV and those most at risk of HIV Hopkins Bloomberg School of Public treatment-related questions was 56%,
infection—has a pivotal role to play Health, and Janssen Therapeutics to or an “F.”
in maximizing the use and impact conduct the largest-ever survey of the Respondents appear especially
of these powerful treatment and HIV science and treatment literacy of ill-prepared to assist PLWHA and
prevention tools now at our disposal. the HIV/AIDS workforce. those at high risk for HIV infection
New data summarized in this More than 3,600 HIV/AIDS (HRN) in using antiretroviral-based
report suggest that the HIV/AIDS respondents from 48 states, the biomedical prevention tools, such as
workforce does not have the science District of Columbia, and U.S. PrEP and Treatment as Prevention
and treatment knowledge it needs territories completed a 62-question (TasP). The average score on clinical/
to respond to the challenges and web-based survey. The survey was biomedical interventions was 46%,
opportunities presented by these new broadly representative of the HIV/ and the survey found considerable
scientific developments. AIDS workforce. Men accounted for questions among respondents
Fully leveraging the potential of 54% of respondents, while people regarding the effectiveness of bio-
new HIV/AIDS biomedical tools de- of color represented 57% of survey medical interventions.
mands that HIV/AIDS workers have participants. Forty-one percent of the
strong knowledge of HIV science and respondents work in the South.
WHEN WE KNOW BETTER, WE DO BETTER 7
Disparities in HIV Science among people who have worked at adhere to prescribed regimens, it will
least 15 years in the HIV/AIDS field. be the HIV/AIDS workforce that will
and Treatment Knowledge Respondents from the deep South provide the critical assistance to make
scored lower, on average, than workers this happen.
among HIV/AIDS Workers from other regions—a distinction An urgent national initiative is
that persists even after controlling needed to build the HIV science
for educational level and other and treatment literacy of the HIV/
Black and Latino respondents variables. However, within regions of AIDS workforce. Specific attention
scored notably lower than their white the country, there were considerable will be needed in the groups of
colleagues. This is true even after differences between and within states HIV/AIDS workers who appear
controlling for education, region of in participants’ scores. to have especially sub-optimal
residence, time working in the AIDS understanding of biomedical issues,
field, or any other variable taken into although the initiative will need to
account in the survey. By contrast, Closing the HIV Science and be comprehensive and nationwide
LGBT and HIV-positive respondents in scope, as scores are unacceptably
scored higher than the workforce as a Treatment Knowledge Gap: low across the HIV/AIDS workforce.
whole. Continuing education opportunities
The smaller the organization, the An Urgent National Priority will be needed, as the evidence
less likely the staff were to exhibit base for HIV science and treatment
strong HIV science and treatment will continue to evolve. HIV/AIDS
knowledge. Participants working Although biomedical tools are organizations will need to prioritize
at community-based organizations largely prescribed in clinic settings, professional development on HIV
(CBOs) had generally lower scores than physicians and nurses typically lack science and treatment issues, and
staff at AIDS service organizations. the time, expertise, and grounding in particular steps will need to be taken
No major differences were observed the community to address all the many to deploy people living with HIV as
between workers in health factors that influence an individual’s unmatched peer educators and patient
departments and those working at ability to use biomedical treatment and navigators.
AIDS service organizations (ASOs). prevention technologies. By contrast,
Among all variables studied, the HIV/AIDS workforce has, over
the educational attainment of the nearly 35 years, specifically been
participant was most closely correlated designed to understand and address
with higher scores on the survey. The the needs of those most affected by
longer a worker remains in the AIDS HIV. If the individuals who need to use
field, the higher on average is his or these biomedical tools are to be fully
her knowledge level, with especially informed, engaged, and empowered
pronounced knowledge advantages consumers who can successfully
8 WHEN WE KNOW BETTER, WE DO BETTER
The Findings
The jury is in. The AIDS epidemic— worked to squelch safer sex programs
and to withhold funding for life-
which has claimed the lives of more saving AIDS research, the AIDS field
has insisted that the nation’s response
than 650,000 Americans and devastated to the epidemic should be based on
scientific evidence. But in 2015—34
countless communities—can be brought years after the epidemic was first
identified—is the HIV workforce
to an end—in our lifetime! still committed to a science-based
approach? And, if so, are we sure
that workers in the AIDS field are
Advances in biomedical science is largely dependent on rapid scale- sufficiently aware of and confident in
have turned the corner on what up of antiretroviral therapy and these new treatment and prevention
was once thought by most to be an other antiretroviral-based prevention approaches?
automatic death sentence into a methods such as PrEP. “We have talked a lot about getting
problem that can now potentially Here in the U.S., biomedical to zero, and we’ve also repeatedly said
be solved—once and for all. strategies represent the cornerstone that we have the tools to make that
Antiretroviral drugs, it turns out, for the CDC’s High Impact Prevention happen,” said Leisha McKinley-Beach,
not only largely halt the effects of (HIP) approach, which aims to HIV program administrator for the
HIV infection within the body, but maximize the number of new HIV Fulton County Department of Health
also have an extraordinary ability to infections averted with existing tools and Wellness in Atlanta. “But we
prevent transmission and acquisition and resources.2 might not have the workforce to get us
of HIV. However, the availability of high- to zero.”
Globally, recent modeling by impact biomedical prevention tools Moises Agosto, head of the
UNAIDS confirms that bringing is only the first part of the equation Treatment Education, Adherence and
available tools to the right scale in toward ending the epidemic. These Mobilization Team at the National
the next five years would reduce tools need to be understood, effectively Minority AIDS Council, has similar
the number of new HIV infections used, and sustained by those who need concerns. “In all my years doing
by 89% and the number of AIDS- them. treatment literacy and health literacy,
related deaths by 81% by 2030, So, the question is: Is the HIV/ I’ve found that people working in the
effectively ending the epidemic as a AIDS field prepared to translate these AIDS field are least prone to educate
public health threat over the next 15 breakthrough scientific findings themselves about the clinical aspects
years.1 Biomedical tools are now at into concrete results for affected of HIV.”
the center of the HIV toolkit, with communities?
UNAIDS modeling finding that Since the early years of the
achievement of these ambitious aims epidemic, when members of congress
WHEN WE KNOW BETTER, WE DO BETTER 9
The HIV Knowledge Continuum
and the HIV/AIDS Workforce
Although everyone in the HIV/AIDS workforce requires basic scientific and
treatment knowledge, the level of knowledge needed varies depending on the
activity.
Promoting and delivering HIV testing: Comprehensive, detailed knowledge isn’t
needed to encourage someone to learn their HIV status. However, testing workers
need to be prepared to explain why an HIV test is beneficial, including the benefits
of early therapy. Workers need to be prepared to address misconceptions about HIV
treatment, such as lingering, mistaken perceptions that HIV regimens are complex
and highly toxic.
Linking people to care: Encouraging an individual who has tested HIV-positive
to enter care requires somewhat more knowledge. The basic components of the HIV
clinical process may need to be explained, and assistance may be required to help
individuals understand their health care options. HIV workers will also need to
understand the early diagnostic tests that will be performed and be prepared to help
the individual understand how these tests will be interpreted and how they will
inform decisions about treatment.
Promoting treatment retention and adherence: Even greater knowledge is
needed to help individuals successfully navigate the HIV treatment continuum. A
comprehensive understanding of the HIV clinical process is required, as well as an
in-depth understanding of side effects and co-morbidities, including how to detect
them and how they can best be managed.
Promoting antiretroviral-based prevention among HIV-uninfected people:
This line of work may require the greatest degree of knowledge, as PrEP and other
antiretroviral-based tools remain poorly understood in the community. Individuals
considering PrEP may have questions about how the intervention works
biologically, be skeptical that it works, or have concerns that they might become
resistant to antiretroviral drugs if they ultimately seroconvert.
10 WHEN WE KNOW BETTER, WE DO BETTER