| 
Past Issues
Volume 18, number 3/4
March/April 2004
Working Positive
Learning to really live with HIV
Looking for Support
Growing number of programs assist transition to work
KEEPING it Real
Employment plus support shows success in Philly
Mapping a Future
Examining the issues before making the leap
Work FAQ
So, what's up with work?
Fear of Failing
We can improve medical safety net coverage
New-Fill Near
FDA advisory panel recommends approval for facial wasting
Why Work?
Karen Escovitz makes the case
Working Positive
Returning to Life
By Eric C. Ciasullo
If you think about it, it's nothing short of amazing that some
of us have made it this far. We have endured despite the threat
of death, despite the symptoms and the stigma and all of the sheer
indignities of HIV. We have fought back the fear and the depression,
the sense of vulnerability, the discouragement — and the discouragers.
For those of us who have endured in the face of this debilitating
illness and who have stood up to the relentless physical, emotional,
addictive and political pressures, our very lives are a victory.
Having beaten such incredible odds, the next steps are both achievable
and inevitable. More and more of us are getting to a point where
we're ready to claim our future. No matter where we're starting
or what we've been through, all of us have some capacity to move
toward greater autonomy, toward more personally meaningful social
engagement, and toward something more stable and satisfying than
subsistence level income. More and more of us are thinking about
work.
I'm a gay man with AIDS. That's one of the ways I can be identified,
but it's also true that I've been many other things in my life.
I've been a student and a teacher, a protégé and a mentor,
a son to two parents and a brother to two siblings, a boyfriend
— briefly — to several guys, a partner to two men, and
after years in the wilderness, a husband to just one. I've been
an ROTC cadet, a frat boy, and a Catholic seminarian. I've been
a waiter and a writer and a counselor to homeless and incarcerated
youth.
In the context of this epidemic, I've been a street-based activist,
a social services advocate, a member of planning councils and boards
of directors, a prevention educator, a case manager, a program director,
and now a public health administrator.
Like all of us, there are a lot of things that contribute to who
I've been and who I am. But to many government officials, I am first
and last a person with AIDS. To them and many others, the diagnosis
in my medical chart stands out as the single defining element of
my life and my identity.
When I was diagnosed with HIV in 1990 the evidence was clear that
I was looking at a three to five year prognosis. In 1991, my T-cells
dropped below 200, anticipating what would soon become an official
AIDS diagnosis. In the fall of 1992, a few weeks before I turned
30, when the headaches and the fatigue and the other disabling side
effects became just too much, I went out on "permanent" disability.
When I tested positive we were deep in the Reagan/Bush years, more
than five years away from the emergence of protease inhibitors,
and it never occurred to me that I would see 35, never mind 40.
It never occurred to me that I'd see a Democrat elected president,
not to mention a second Bush. It never occurred to me I'd see the
turn of the century, or fall in love, or buy a house, or think about
having children. Yet these things are all true today.
Back then, I had stopped thinking about the future at all. I took
care of sick friends, and I grieved their deaths. I grieved my own
death prematurely. I used the AIDS Drug Assistance Program (ADAP)
to access preventative medications for every opportunistic infection
imaginable. Between them and the large quantities of medical marijuana
I smoked for the nausea (and the boredom), somehow I endured beyond
every realistic expectation.
Then, along came the protease inhibitors and triple combination
therapy. To be honest, I initially experienced a sense of horror
as I realized that I wasn't going to die any time soon. I used to
refer to that as "the threat of imminent survival." Having experienced
so much grief and having prepared so completely for my own death,
I really didn't know whether I could muster up the psychic energy
necessary to prepare for life.
But I did it — with a lot of luck. I had maintained some limited
involvement in the politics of social services for youth and people
with HIV and I stumbled onto a few consulting gigs. People offered
me the occasional part-time job related to my prior work experiences.
Eventually, as I started to exist more in the "Land of the Living,"
a passion and excitement for life started to creep back in. I started
to contend with some of the financial wreckage, the vocational confusion,
and, let's call it out, the depression, fear and drug abuse that
stood between me and employment.
I made some good decisions and a fair number of bad ones. I started
out slowly, and in 1998, after more than six years on "total and
permanent" disability, I was offered a job as an AIDS services administrator.
It hasn't been easy. I needed external support to deal with some
of the issues that had been swept under the carpet along the way.
Like a lot of people who make that transition, I had an emotional
crash after about six months when I realized that work wasn't going
to fix everything that was broken in my life. Then, after about
two-and-a-half years, my third combination of anti-virals stopped
working. I started a new course of treatment that made me so sick
I had to take two extensive leaves of absence that kept me out of
work for almost a year. Fortunately I work for a large employer
that understands its responsibilities under the ADA (Americans with
Disabilities Act) and the Family Medical Leave Act about medical
privacy and reasonable accommodations.
The reality is I still have AIDS, and my fifth combination of HAART
has five drugs — four classes — which has created another
whole set of challenges along with the need for still more pills
with still more side effects. Honestly, sometimes there are so many
side effects I lose track.
I suppose I could stay home all day and write down my symptoms,
and discuss them endlessly over a bong with some of my friends who
aren't working. But the truth of the matter is that my life is infinitely
better now that I work. Don't get me wrong, it can be really challenging
taking care of myself as well as I need to. I don't eat well enough,
I don't get enough exercise and sometimes I'm late with my meds.
But overall, I think organizing my life around work that I care
about leaves me physically, mentally, and spiritually more healthy
than organizing it around managing symptoms and pursuing healthcare.
And it's great to get a decent paycheck.
* * *
I recently went to a large conference for HIV service providers.
There were workshops on fundraising and management, lipodystrophy
and hepatitis C, microbicides research and vaccine development;
workshops on providing food and housing and healthcare, adherence
and nutritional education and treatment support to people with HIV/AIDS
in all of our incredible diversity. The CDC has recently discovered
that people with HIV have prevention needs and a role to play in
prevention, and so there were even workshops on HIV prevention for
positives.
But there was nothing on vocational counseling. There was nothing
on employment; nothing on supporting our efforts to seek and maintain
economic independence. Nothing to help us to make informed choices
when risking the relative security of our medical, housing and financial
benefits by simply seeking employment; nothing to overcome the barriers
to social integration we face. There was nothing for someone taking
their first step toward getting a first job. For that matter, there
weren't even any workshops dealing with the challenges of providing
health and supportive services to those of us who never left the
workforce, to those of us working again, or to those of us struggling
to find our way back onto benefits after our employment efforts
have faltered.
Other than a giddy moment around the advent of triple combination
therapy when some overly optimistic prognosticators predicted that
people with HIV were all going to surge back into the workforce,
it seems as if too many of our advocates and allies have determined
that employment is something we shouldn't or can't achieve. At the
very least, they seem to view the challenge of employment as a marginal
issue. It still hasn't captured their imaginations, commanded their
attention, called forth their creativity, or in any significant
manner compelled them to marshal their considerable political resources.
Let's be clear, the federal government now spends billions of dollars
a year for HIV healthcare and supportive services — and we
need these resources. It's true that many of us have a vital need
for publicly-funded medical services, access to drug therapies,
and assistance with food and housing and other basic needs. But
it's also true that with our allies we have created what many of
us now refer to as an AIDS Industrial Complex, one which is predicated
on our postures of passivity and dependence. Services and programs
designed to assist us in our efforts to become or remain self-sufficient
are left bankrupt beggars at the gate. Indeed, transition-to-work
services are not a permissible use of Ryan White funds.
Certainly the dialogue at this AIDS conference presumed that we
continue to inhabit what some call a disability identity —
and that this identity is in fact total and permanent. The implication
is that we must maintain this posture if we are to continue to be
beneficiaries of the system's good efforts and good intentions,
and of the increasingly insufficient resources of an increasingly
out-of-touch and disinterested federal government.
To be honest, I believe that a perverse and simplistic contradiction
currently exists around issues of employment and people with HIV,
one which careens back and forth between paternalism and a pernicious
form of judgment. Informally, I hear many service providers say
with concern and conviction that most of their clients aren't thinking
seriously about employment, and that even if they are, it just isn't
a very realistic possibility. Painfully, I hear others speak with
scorn of those of us who (in their opinions) aren't working and
could, or aren't working and should — resentful that we left
or haven't yet found our way into or back into the workforce. We
are described by them in ways that sound suspiciously similar to
Reagan-era descriptions of so-called welfare queens, as if the meager
incomes and scraps of services we receive are so freaking fabulous,
or as if we we're gleefully self-satisfied at scoring some disability
jackpot that allows us to live carefree lives.
Seemingly, many of these good people have somehow failed to grasp
the nature of the complexity in our lives; the reality that, despite
persistent disabling symptoms of HIV disease and HIV treatments,
a great majority of us experience external pressure and/or a real
desire to work. Most of those not working don't feel fortunate but
rather feel stuck in relative poverty or financial chaos. Many of
us feel bored and isolated and stigmatized by the marginalization
of not working. We feel simultaneously sustained and trapped by
disability benefits. Because we continue to be vulnerable to the
uncertainties of HIV, we may be deeply uncertain of our ability
to compete in the job market. Sometimes we are paralyzed by the
fear of losing our housing and healthcare if we try to work but
then end up unable to sustain employment. And we are worried about
whether we can work well enough and consistently enough to really
improve upon whatever stability we might have obtained from the
increasingly fragile benefits system.
* * *
So, our symptoms and uncertainties are real and based on very concrete
challenges and dangers. Nevertheless, for the majority of us who
have benefited and will hopefully continue to benefit from the new
therapies, the question of work is going to assume greater importance,
not less.
Let's look at a few facts. What limited data we have suggests that
as many as three quarters of people with an AIDS diagnosis are not
employed, and that some smaller number, perhaps one quarter, of
people who are simply HIV-positive are disabled by the virus. In
places like San Francisco, that would mean that as many as half
of all people with HIV/AIDS are not working. Nevertheless, a San
Francisco needs-assessment a few years back suggested that as many
as one in three non-employed/disabled people with HIV/AIDS had an
urgent desire and intention to return to the workforce. (In Los
Angeles at around the same time, it seemed that two out of three
were seriously thinking about employment.) And the San Francisco
assessment showed that the need and desire to work was expressed
equally across obvious distinctions like race, sex and gender, sexual
orientation, and income level.
If these numbers hold true nationally, then one- to two-thirds
of people with HIV/AIDS in this country may fit the following profile:
we aren't working; we're totally dependent on family, friends and
social supports for food, shelter and healthcare; but we're thinking
about or actively trying to find a way to become employed, trying
to find our way into the mainstream of American life. Why aren't
these efforts capturing the attention of our allies and advocates?
One reason is that we just don't know if these numbers hold true.
More than seven years after the emergence of triple combination
therapy, we still have never had any kind of comprehensive national
survey of people with HIV designed to determine our attitudes and
needs regarding employment. Almost everything we think we know continues
to be anecdotal, and this is simply unacceptable. It's long past
time that the federal government invested the resources necessary
to help us better identify and diminish the barriers to our full
social inclusion and economic empowerment.
When we talk about a "changing epidemic," it seems to me that this
dynamic concerning work should be capturing a great deal of our
attention. And let me say this quite frankly, the people and the
organizations that say they are concerned about our welfare had
better take notice of this, or they're going to become increasingly
less relevant in our lives.
Karen Escovitz from the Matrix Center in Philadelphia has written
an eloquent and concise articulation of the need to pay greater
attention to this issue of HIV and employment. She says simply,
"Work is the single most normative experience for adults in our
society. And if we believe that individuals have futures, most of
those futures have to include work."
What I most appreciate about Karen's insight is that it's not rocket
science. Any casual reflection on the nature of work in our society
will reveal that work has not just economic, but similarly significant
social and even spiritual dimensions. For many who are employed
in the HIV/AIDS service field, work plays a vital role in their
own sense of worth and self-esteem. Why would anyone assume that
recipients of such services would place any less value on the social
and financial remuneration that work brings?
As I tried to demonstrate earlier, each of us is so much more than
a virus and a diagnosis. But if we're not supported in our efforts
to develop viable futures as actors in our own lives, if we're not
given opportunities to confront the obstacles to work (that might
include but isn't limited to paid employment), how are we ever to
have lives that are really worth living?
The sad and frightening truth is that the most experienced and
innovative programs attempting to assist HIV-positive people with
work entry/re-entry issues have been hobbled by uncertain, patchwork,
and diminishing funds. Programs that showed early excitement after
initially being funded as demonstration projects have not subsequently
been invited to apply for anything that approaches stable government
funding streams.
We know from experience that people with HIV/AIDS have discrete
and particular needs for targeted services. The time has come for
our friends in the larger HIV/AIDS community to join with us in
pressing decision makers at CDC, HRSA, and Departments of Labor
and Education to recognize the essential role of employment and
employment services in the health and wholeness of people with HIV/AIDS
in the only manner that has any meaning — through strategic,
coordinated, and sustained funding.
* * *
Last year, a group of people working on these issues organized
ourselves as the National Working Positive Coalition, or NWPC. Our
mission is to advocate for work opportunities and improved services,
to coordinate the sharing of relevant information, and to promote
experience- and evidence-based best practices in employment services
for people living with HIV/AIDS. Working on behalf of the larger
group, some of us have developed a core set of principles that we
believe must guide our work together and must set the stage for
national efforts and discussions about HIV and employment.
Twenty years ago a small group of people with AIDS caucused as
part of the Second National AIDS Forum in Denver. They formed the
country's first national AIDS organization, NAPWA, the National
Association of People With AIDS. They also crafted a set of revolutionary
guidelines for the empowerment and treatment of people with AIDS
that came to be called the Denver Principles. These Principles
were revolutionary because they rejected the words and roles of
"victim" and "patients," insisting that we be recognized as "people
living with AIDS," and that as people we have the full range of
human rights and needs as everyone else, and that we must be involved
in the decisions that affect our lives.
My fantasy is that in the not too distant future, people living
with HIV/AIDS will really be seen as full members of the community,
agents of our own destinies, folks with futures and aspirations
and a right to meaningful inclusion in the lives of our larger communities.
When that happens, our friends and allies and advocates may still
be needed to assist us with the work of moving forward. My hope
is that in the same way that the Denver Principles shaped the last
generation's work on AIDS a new generation's efforts will be informed
by the revolutionary shift in thinking represented by the values
of this nascent National Working Positive Coalition.
I believe that we are at the beginning of a new era in the history
of this epidemic. Here's what I mean by that. The first 15 years
of the epidemic were about dying — first quickly, then a little
more slowly, but it was all about dying. The next five years were
about not dying — and I know that people are still dying, but
if we're honest with ourselves, the impact of treatment in the developed
world is that mortality due to HIV has been greatly diminished.
It's my hope and belief that this next era of the HIV/AIDS epidemic
is about living, really learning to live, fully, with HIV.
Eric C. Ciasullo is a founding member of the National Working
Positive Coalition (NWPC).
National Working
Positive Coalition (NWPC)
Guiding Principles
People with HIV/AIDS have the right to explore and engage
in work opportunities as a central function of their efforts
to live full, independent and satisfying lives.
Individual choices of people living with HIV/AIDS related
to work must be respected. The diversity of positive work
outcomes including, but not limited to, paid employment must
be recognized.
Vocational services must be responsive to the diversity
of work experiences and cultural backgrounds of people living
with HIV.
Consumer choice and control of decision-making related
to work must be the foundation of services, research, program
design and policy-making.
People with HIV/AIDS must have access to necessary supports
to explore, consider, pursue and engage in work. Systemic
barriers to vocational development of people with HIV/AIDS
must be removed.
Individual experiences of living with HIV and transitioning
to work are non-linear and change over time. Any service,
research, program design or policy related to HIV and work
must take this dynamic into account.
Communication, cooperation and collaboration are essential
between people with HIV/AIDS and those who are crucial to
positive outcomes for people with HIV/AIDS. The NWPC respects
the unique contributions of all.
www.workingpositive.net |
Resources:
Gay Men's Health Crisis (GMHC), New York, NY "Transition
to Work" (212) 367-1007
Positive Resource Center, San Francisco, CA (415) 777-0333
Cascade AIDS Project, Portland, OR "Working Choices" (503)
223-5907
Housing Works, New York, NY "Second Life Job Training" (212)
966-0466 x1172
AIDS Project Los Angeles (APLA), Los Angeles, CA "Work Services
Project" (213) 201-1471 |
The National Working Positive Coalition (NWPC) will be
presenting a day-long, pre-conference institute at this year's
U.S. Conference on AIDS (USCA), October 21–24 in Philadelphia,
PA.
Scheduled for Wednesday, October 20, the program, titled
"Working for a Future" will review current knowledge about
the value of productive activity, effective rehabilitation
service practices, research findings, and advocacy priorities
related to work activity and employment for people living
with HIV/AIDS.
Details will be forthcoming on the NWPC website: www.workingpositive.net. |
Choosing an Employment Program
By Bob Huff
More and more AIDS service organizations (ASOs) are hearing an
increasing demand from clients for help in preparing to enter the
job market. Counselors at GMHC report a growing number of calls
from people interested in "testing the waters" for a return to work.
But there's more to helping people get ready for work than simply
referring them to a resume writing class or to the State's vocational
rehab office. Few ASOs are set up to offer the kind of sustained,
multi-dimensional vocational rehabilitation support that people
with a complex illness like HIV require. "Typically ASOs don't understand
employment, while State Departments of Rehabilitation don't understand
HIV," says San Francisco vocational counselor Betty Kohlenberg,
"There are only a few programs that successfully offer vocational
services in an HIV-aware setting." The fact that Ryan White CARE
Act funds may not be spent on vocational services does not help
matters.
Vocational support can be important for people with HIV in all
kinds of life situations. Some clients may have extensive work histories
in highly responsible positions but need help to decide what they
would like to do in this new phase of their lives. Others may have
no conventional employment history or may be leaving prison and
will need additional kinds of support. Lynn Wiles, of the Cascade
AIDS Project in Portland, Oregon, runs support groups for her clients
as part of their "Working Choices" program: "We have people just
out of prison sitting next to people wearing suits and ties. It
makes for interesting groups."
Most service providers contacted prefer to avoid describing their
initiatives as "return to work." Jeffrey Rindler, director of the
volunteer and work center at Gay Men's Health Crisis in New York
says, "At GMHC we call our program "Transition to Work" because
many people we serve have never worked before."
Generally, motivations reported for investigating work seem to
be similar. "The clients I talk to will usually have strong reasons
for wanting to return to work, like having more cash in their pocket
and the opportunity to do something more rewarding and fulfilling
with their time," said Michael Buitrón, a counselor at the
Work Positive Assistance Project at the Harbor-UCLA Medical Center
in Los Angeles. Often, a fulfilling occupation is identified as
taking on a "helping" role. Brian Varner, an AIDS advocate in Knoxville,
is pursuing a graduate degree in medical ethics: "I want to return
to work to help others in similar situations, to advance my career,
and to change my self image from 'incurable AIDS victim' into 'contributing
member of society'."
Approaches to Vocational Counseling
The overriding objective of most well-considered programs is not
seeing that every client obtains paid employment, because work may
not be best for everyone. It's about making sure that each individual
understands her or his own needs, motivations and opportunities
and is able to make an informed decision about what will best support
her or his overall health and well-being. Betty Kohlenberg, who
runs her "Making a Plan" or MAP program at San Francisco's Positive
Resource Center, calls this a client-focused model. "The best outcome
is one that is best for the client — not for the agency or
the funder."
Reshard Riggins, a vocational counselor at GMHC agrees, "I want
people to understand at the outset that they have nothing to lose
by exploring their options. Our goal is to allow them to define
what they want to do."
The MAP program is a structured, eight-week program where, Kohlenberg
says, "the outcomes are not determined, but the program is. We know
what people need to do to get to the point where they can make an
informed decision." The Cascade AIDS Project will soon begin offering
Kohlenberg's MAP program.
But others say that, once a person has expressed a desire to work,
there is no substitute for learning on the job. Karen Escovitz,
of the Matrix Center in Philadelphia, ran a demonstration program
called "Project KEEP" that got people out into the real-world job
market and gave them plenty of support as problems came up. "We
helped people get started then let them learn in process. You learn
your job by doing your job. There's no substitute for that," said
Escovitz.
Project KEEP participants found their jobs in the competitive employment
market. An innovative program for homeless people with HIV pioneered
by Housing Works in New York City provides training and employment
opportunities through a wide range of agency-owned enterprises,
including cafes, retail stores and a catering service. The result
for many participants is education, work experience and a paycheck,
all delivered within a supportive environment.
For many clients paid employment is not the first step or even
the ultimate goal. GMHC's Rindler says, "For some, a volunteer experience
is what they are looking for. This allows people to get some experience
with structure while they work on their skills."
One of the biggest fears people have when considering work is that
they may not be able to stick with it. Kohlenberg stresses that
continuity of employment support services is essential, especially
due to the episodic nature of HIV disease and treatment side effects
than can lay down unexpected speed bumps in a person's plans. "Employment
counseling needs to be continuously available. Things change for
people with HIV. People drop in and out of work. They need to know
some one will 'be with me and won't be mad at me if I blow it'."
In spite of these challenges, people with HIV are increasingly
saying they want to work. As one client told Reshard Riggins, "I'd
rather die working than live without dignity."
"Of course, this is not everyone's attitude and there is no reason
it should be," said Riggins, "We want people to get the information
they need and understand what is best for them. After going through
this process, if someone decides not to go to work, that is a success."
Benefits
After fear of failure, the biggest worry for most persons living
with HIV/AIDS, whether working or on Social Security disability,
is fear of losing their medical coverage. But the rules about eligibility
are complicated and can be different in different states and different
cities.
All the experts agree: if you are receiving disability benefits,
you would do well to carefully understand your situation before
you plunge back into the world of work. And if you're currently
working but worry about how long you can keep up the pace, time
spent with a benefits counselor now may smooth the road considerably
in the future if you find you need to change jobs or stop working.
Jane Gelfand, a benefits attorney at Positive Resource Center in
San Francisco, describes benefits counseling as "harm reduction"
because so much can go wrong with a person's life and health if
they lose the stability that benefits provide.
Some people report frightening difficulties when trying to restart
benefits after a period of work. Dan Dunable, an AIDS advocate in
Atlanta, isn't sure it's worth taking the risk: "I went off SSDI
and returned to full-time employment. Since then I have had to leave
full-time employment twice. And each time I applied for reinstatement
of my SSDI or made any changes, it created a nightmare."
Others live in fear that they will inadvertently go over the maximum
monthly earnings allowed by Social Security and get in trouble.
Melvin is an AIDS treatment advocate in Westchester, New York with
a per-diem hospital job: "I had to get my director to fill out a
lot of papers and make sure that I didn't earn over $800.00 per
month. I don't get medical coverage, holidays, sick days or personal
days from my job. Worrying about getting sick and losing my Medicaid
is very stressful."
The Social Security system is complex and sometimes capricious.
A knowledgeable advocate can help assure that you are treated fairly.
Jane Gelfand warns that Social Security personnel sometimes don't
understand or follow all of their own regulations. But, she says,
if every denial is challenged, persistence usually pays off. Yet
outside of a handful of cities, few have access to the support of
a dedicated benefits attorney to help them battle the system.
If Social Security can seem daunting, people on Long Term Disability
(LTD) insurance obtained from a job have even fewer protections.
As for-profit entities with few government controls, LTD insurers
have been known to terminate benefits without warning, which creates
a source of continuing anxiety for people with these policies who
are legitimately disabled.
Making it Work
People with HIV/AIDS considering work face many other uncertainties,
ranging from outdated computer skills to age discrimination to whether
to disclose their HIV status. Brian Varner wonders if the gaps in
his resume out him: "I'm not married with kids, so it doesn't take
much effort on the part of an interviewer to conclude that I'm a
gay man with AIDS."
Those who have been on both sides of the fence can be a good source
of support and guidance. Ed Lortz, a retired, part time financial
consultant in San Francisco, has this advice for those contemplating
employment: "It is important to learn to distinguish between stress
and challenge. Stress will kill you, challenging yourself will keep
you alive." Also important, he says, is to tailor your living expenses
to your level of income,"Financial stress will kill you just as
fast."
Sam Soriano, a volunteer AIDS activist in Seattle thinks the challenges
are worth it: "I thrive on being able to be useful and to learn,
and to help others know that they are important and that HIV/AIDS
is not the end of the life cycle but can be used to be productive
and purposeful."
Project KEEP
By Karen Escovitz
Project KEEP was a three-year demonstration project to identify
and develop service strategies for overcoming barriers to obtaining
and maintaining employment for persons living with HIV/AIDS. After
an initial community consultation and design phase to identify real
and perceived barriers, comprehensive employment support services
were provided to unemployed adults living with HIV/AIDS during a
two-and-a-half year period. In order to reflect the demographics
of HIV/AIDS in urban settings, participants were recruited from
Empowerment Zone areas of Philadelphia.
Description
Project KEEP implemented services based on vocational rehabilitation
practices proven effective in helping people with psychiatric disabilities
to achieve and maintain employment. The components of such supported
employment programs typically include:
- Commitment to competitive employment as an attainable goal
for clients
- Rapid job search and placement, rather than lengthy pre-employment
assessment, training and counseling
- Assistance finding jobs according to client preferences, strengths
and work experience
- Ongoing availability of follow-along, post-employment supports
- Employment services that are integrated with other rehabilitative
services
In keeping with these principles of a supported employment program,
Project Keep did not emphasize job readiness training, but rather
assisted "all who say they want to work" to find employment in the
competitive job market. The rapid attachment approach, along with
comprehensive individualized supports, allowed participants to use
real-world work experience as an opportunity to develop job maintenance
and coping skills.
Participant
Demographics |
Number of participants
Age, mean (range) |
N=148
38 years (20–65) |
| Gender |
|
Male
Female
Transgender |
60%
38.5%
1.5% |
| Race/Ethnicity |
|
African American
Latino
White
Other |
72.8%
19.7%
6.8%
0.7% |
| Education |
|
No high school diploma
High school grad
Post high school |
29.3%
53%
17.7% |
Methods
Baseline interviews were conducted by research staff and follow-up
interviews were collected at six-month intervals. Employment tracking
data was collected at job start, at any significant change in job
characteristics, and at job end. Time spent in each service category
was tracked. Services and support were available to participants
throughout the project duration with at least monthly follow-up
by support counselors. Counselors were available to be reached by
pager when problems occurred on the job. Services provided included:
- Assessment and evaluation
- Job search assistance
- Benefits and legal counseling
- Disability management education
- On-site job support (negotiations with employers, etc.)
- Job-related problem solving
- Specific skills training
- Referral to auxiliary service
s
- Coordination and collaboration with other service providers
The target of 100 participants was rapidly enrolled and dropouts
replaced from a waiting list. During the course of the project,
148 individuals obtained services.
Baseline
Characteristics |
Years since HIV diagnosis, mean (range)
HIV+/AIDS
HIV+/No AIDS |
5 (2.0–16.4)
26%
74% |
| Comorbidities |
|
Concurrent psychiatric disability
Substance abuse treatment in prior month |
34.5%
31.0% |
Any employment experience
Months unemployed, mean (range) |
92%
33.7 (1–300) |
| Social Security status |
|
SSDI
SSI
Both |
18.2%
20.2%
9.5% |
| Other benefits |
|
Public assistance
No cash benefits |
34.5%
17.5% |
General Findings
Best practices for helping people with psychiatric disabilities
find employment were effective in this population.
There were few significant correlations between medical indicators
(CD4 count, AIDS status, recent hospitalization) and employment
outcomes.
Individuals with longer periods of unemployment and those with
concurrent psychiatric diagnosis tended to take longer to find a
first job, although these factors were not correlated with overall
employment rate, which suggests that effective employment support
enables people to overcome these barriers. Medical indicators, low
education level and self esteem were not associated with time to
the first job.
Findings Related to Benefits:
Employment rates were similar for those receiving SSI and SSDI,
although those receiving disability benefits worked fewer hours
than those not receiving benefits.
Participants who stated they were not afraid of losing benefits
(53%) were more likely to become employed and work more hours than
those who said they were afraid of benefit loss.
Correlations
with Total Hours Worked |
| |
Corr |
Sig |
Overall functioning score at baseline
Received offsite vocational counseling*
Received onsite job support** |
.18
.571
.26 |
.03
.001
.01 |
| *primarily post-employment job-related problem
solving, disability management and coping skills development. |
**primarily mediating misunderstandings between
employer
and employee |
Discussion
The majority of participants in this demonstration project were
people of color and people from impoverished backgrounds and neighborhoods;
they were representative of the populations in which HIV is spreading
most rapidly in U.S. urban areas. Most participants experienced
barriers to employment in addition to HIV/AIDS, including psychiatric
disability, substance abuse, domestic violence, low education levels,
history of incarceration, and unstable housing. Despite multiple
disadvantages, Project KEEP participants provided with access to
comprehensive and proactive individualized supports were able to
achieve a high rate of employment and retention in competitive jobs.
It is important to note that Project KEEP participants were self-selected
individuals actively seeking to explore employment possibilities
and were therefore likely to represent community members who are
most motivated to work or those who have less medical impairment.
Furthermore, over 90 percent of participants had some work history.
This supports recent findings that even limited prior work experience
is a good indicator of capacity for vocational success.
Results |
| Outcomes |
|
Some employment
No employment
Hourly wages, mean (range)
Participants remaining in job >= 90 days
Total jobs held (per employed participant)
Jobs held >= 90 days |
114/148 (77%)
24/148 (23%)
$8.49 ($2.50 – $44.23)
63%
278 (2.4)
52% |
| Job characteristics |
|
Full time
Part time
Reported income
Under-the-table income
Jobs with benefits
Jobs without benefits |
54.3%
45.7%
79.5%
20.5%
12.6%
87.4% |
It should also be noted that the services demonstrated to be most
effective were not necessarily those traditionally associated with
"back-to-work" programs or vocational services for persons with
disabilities. These programs typically stress pre-employment activities
such as job readiness and job-seeking skills (resume writing and
interview techniques, etc.), rather than the job-keeping skills
that will help individuals manage work in their lives once they
become employed. Follow-along services are generally limited or
unavailable once a person becomes employed. Project KEEP findings
strongly support the value of a service approach that emphasizes
post-employment support, including disability management and job-related
problem solving. It is also critical that the ongoing services be
available as needed to support individuals when changes occur in
medical condition, job situation or life circumstances.
The type of back-to-work efforts most common in the HIV community
often emphasize benefits counseling and decision-making about financial
and legal issues and typically lead participants through a cost/benefit
analysis of their options. These programs, while addressing important
components of transitioning to work, may not adequately consider
the intangible benefits, such as alleviating boredom and gaining
a sense of purpose and social integration.
Karen Escovitz, MSS, is a Project Director at the Matrix Center
@ Horizon House, Inc., in Philadelphia. For more detailed information
about Project KEEP or for training/technical assistance regarding
employment for people with HIV/AIDS, she can be reached at: karen.escovitz@hhinc.org
Group Employment Counseling
"Making a Plan"
By Betty Kohlenberg
"Making a Plan" (MAP) is a career counseling program for closed
groups of eight to twelve clients who attend a two-hour session
weekly for eight weeks. The MAP group counseling program began as
a project of the Positive Resource Center (PRC), a San Francisco
agency offering employment services exclusively for people living
with HIV/AIDS. The groups were a response to an increased client
need within an environment of limited staff availability, stemming
from a recognition that among the barriers that keep people with
HIV/AIDS from returning to the workplace is the problem of insufficient
career counseling resources to adequately serve those clients who
wish to expand their personal options and develop new work goals.
MAP programs at PRC are repeated approximately four to five times
annually.
The group counseling program offers people with HIV career counseling
support while they identify and plan training and employment goals
in a series of eight weekly group sessions. The development of a
personal plan for pursuing training and employment is an explicit
goal of program participation, though there are also a range of
somewhat more implicit goals of psychosocial support and amelioration
of cognitive and affective barriers to considering work. All participants
are expected to focus on employment, as is indicated by the group
name — "Making a Plan" — which was proposed and adopted
by the first group's participants. The weeks' activities are structured,
focusing on exploration of the individual's characteristics leading
to the choice of a job goal, and further exploration of the needs
of the world of work. The most common result is a plan of the steps
needed to prepare the individual for entry into the chosen field.
While the activities are structured, the outcomes of the program
are not. A wide range of outcomes — as long as they are made
on an informed basis — is acceptable at the end of MAP, including:
starting a new work situation; removing the pressure to return to
work; deciding not to change the work situation; deciding to defer
a decision to change the work situation; or resolving the pressure
to change through non-work means.
During the period September 1999 through February 2004, 20 MAP
groups were conducted at Positive Resource Center with a total of
210 participants. The MAP groups were advertised and made available
to all clients of PRC who could commit themselves to attending eight
weekly two-hour sessions. Service Coordinators at PRC specifically
recommended participation to clients whom they identified as in
need of and ready for the structured support of the program. Clients
who were not interested in working, who were not physically or psychologically
able to work or who would not be consistently available during the
eight scheduled weeks were encouraged to enroll in later groups.
No one who self-identified as interested and willing to participate
was excluded from participation.
The MAP groups are based on the "Client-Focused Model for Considering
Work for People with HIV," an approach that takes into account a
full range of life concerns, categorized as 1) medical, 2) legal/financial,
3) psychosocial and 4) vocational domains.
Consideration of all four domains of influence allows a person
thinking about work to understand the effects of employment decisions
on all aspects of his or her life and allows him or her to make
an informed decision. Not weighing the consequences of entering
the work force on each of these domains could potentially cause
serious harm to a person living with HIV/AIDS, since work-related
activity and income can trigger the loss of important benefits,
including income, health insurance, housing and medical care. Loss
of benefits can be particularly serious in the event of subsequent
deterioration in health status. People who begin to think about
work are often overwhelmed by the complexity of considering all
of these aspects of their lives simultaneously and often find themselves
swirling in indecision and lack of information, unable to move ahead.
As a closed career counseling group of limited duration, the MAP
program focuses on increasing participants' awareness of the specific
inter-related factors involved in making a decision about employment
and positively impacting those factors. This format can be an efficient
way of conducting counseling, particularly where staff resources
are limited.
For more information: www.bkohlenberg.com
Betty Kohlenberg, M.S., CRC, ABVE, counsels people in career
transitions in the San Francisco Bay area.
Frequently Asked Questions:
Rehabilitation and Employment Services for PLWHA
By Eric Ciasullo and Karen Escovitz National Working Positive
Coalition (NWPC)
Isn't it just a few people living with HIV/AIDS that
are able or want to transition to work?
No. First, it is important to recognize that the vast majority of
PLWHA are in their prime work-potential years. Second, increasing
numbers of PLWHA are living longer lives and experiencing longer
periods of time with minimal or manageable symptoms. All of these
individuals could benefit from rehabilitation-oriented services
that are designed to support the restoration of adult functioning.
Furthermore, hundreds of thousands of PLWHA in the United States
are already in the workforce. Dramatic new efforts to reinforce
the importance of HIV testing are intended to inform hundreds of
thousands more that they are infected. As HIV is understood more
as an episodic — perhaps lifelong — disability, many HIV-positive
workers are likely to need work-related services that support them
in their efforts to remain self-sufficient whenever possible.
Studies in Los Angeles and San Francisco suggest that many PLWHA
have a very strong interest in employment. A 1999 needs assessment
conducted by the San Francisco Dept. of Public Health suggested
that as many as one out of three unemployed/disabled PLWHA had an
intention or desire to enter/re-enter employment within the following
6 to 18 months.
There is an urgent need for current national data on these issues.
However, all trends point towards the increased need for employment-related
services.
Why would a person with HIV/AIDS receiving disability
and medical benefits under Social Security, Medicare or Medicaid
want to work?
Permanent reliance on state disability benefits creates a status
quo in which poverty is normative, stigma is inevitable, and PLWHA
are marginalized as disabled dependents.
Work confers meaning, purpose, and identity. Work is the single
most normative experience for adults in our society, containing
profound economic, social, and even spiritual dimensions. Even unpaid
work can play a vital role in creating a sense of worth and self-esteem
and diminishing stigma. Many long-term benefits recipients seek
to become engaged in productive activity to combat boredom and isolation.
Benefits recipients may be interested in supplementing their income
by working part-time, and can be helped to do so without disrupting
the necessary medical benefits upon which they rely. For those who
transition to work full-time, it's possible that their activities
will improve the benefits they'll be eligible for, should they need
them in the future.
Aren't there already agencies that provide rehabilitation
services for individuals with disabilities? Why should they be HIV-specific?
PLWHA and their advocates have only recently begun to engage vocational
rehabilitation (VR) service systems. These systems are in the earliest
stages of identifying and addressing our specific needs. Among other
things, there are fundamental issues of cultural competence that
still need to be addressed, and decades of stigma yet to be unlearned.
VR service providers frequently have a limited understanding of
the ways HIV disease impacts vocational development and the trajectory
of rehabilitation. Moreover, VR systems are not designed to well
serve individuals with any sort of episodic disabilities, having
been designed originally to support the needs of injured combat
veterans.
Vocational services that are HIV-specific can provide a substantial
bridge to these other service systems, and empower PLWHA to use
them effectively. They can play a powerful role in assisting rehabilitation
efforts, which by their nature are often marked by great uncertainty,
anxiety and self-consciousness, and complicated by medical needs
and side effects. It is common to hear PLWHA state that they're
much more comfortable taking the initial steps toward rehabilitation
in an environment where they're confidant that their needs are understood,
where they can be less conscious about visible and hidden manifestations
of HIV disease, among people who have many of the same issues.
Doesn't the Social Security Administration provide
guidance for persons on disability and wanting to transition to
work?
The complexity of SSA rules and regulations can not be overstated.
While recent legislation created meaningful incentives that make
it safer for recipients to explore working, this legislation also
made SSA rules and procedures yet more complicated and difficult
to understand. The incentives impact differently on two wholly separate
(though occasionally overlapping) income programs (SSI and SSDI),
and two wholly unique health insurance programs (one of which, Medicaid,
is administered differently in each of the 50 states). Even SSA
leadership acknowledges that local representatives are often poorly
informed about existing work incentives. Recipients of disability
income frequently need specialized intermediaries that can interpret
SSA guidance, and advocate for individuals with atypical needs.
As it stands, current HRSA guidance doesn't really limit the ability
of client advocates to assist their clients in understanding the
impact of work on benefits, though some EMAs may fail to realize
their need and capacity to do so.
Isn't it a simple process for people to transition
to work after being disabled?
No. The process of entering or re-entering the work world is a complex
process of rehabilitation influenced by many factors including:
the episodic nature of the disease process; periodic changes to
medical regimens; unresolved mental health issues and/or problems
associated with substance abuse; education and training prior to
onset of disability; work history, or lack thereof; awareness of
and access to vocational counseling and training opportunities;
and the willingness of employers to comply with the ADA in the provision
of workplace accommodations.
For many people, HIV-related illness causes an interruption in
work history or training, or delayed entry into the workforce. Furthermore,
the nature of HIV disease itself and its physical changes may require
a person to pursue entirely new career directions. Many PLWHA seeking
rehabilitation services have limited and/or outdated job skills,
especially in fields where there is rapid technological change.
Regardless of work history, learning how to integrate self-care,
disability management, and adherence with the demands of work life
can be challenging. These activities are further complicated by
real and perceived issues of stigma and discrimination, along with
difficult decisions related to workplace disclosure. All of these
challenges can be met more successfully with quality HIV-specific
support services.
What are the potential pitfalls for people living with
HIV in attempting to transition to work?
Issues related to a non-static health status, psychosocial pressures
to work and not work, unresolved challenges related to mental health
and substance use need to be considered alongside the questions
of vocational exploration and training. Fear, anxiety, and depression
are common obstacles in this process. Issues of bad credit, debt
and back taxes may be resolved in a less burdensome manner prior
to employment than afterwards. Careful consideration needs to be
made to the impact of work on health, as well as on various health
and financial benefits. It can be quite challenging to maintain
efforts at medical monitoring, adherence, exercise, and nutrition
while working or training for work, and individuals may need assistance
in assessing their capacities for such activities, and the best
pace at which to do so.
Some PLWHA will need assistance in identifying and requesting reasonable
accommodations from their employers, so that they can succeed in
jobs for which they're qualified. Others will need assistance transitioning
into the job, along with ongoing support for some period of time
(and/or periodically) in adjusting to the balance of maintaining
work and health, and responding to problems as they arise.
Is there enough information available for people with
HIV/AIDS wanting to transition to work to be able to effectively
negotiate the process without specialized assistance?
No. Current systems of governmental and non-governmental workforce
development and rehabilitation are rarely client-centered, frequently
complicated, often perceived as inaccessible to people with disabilities
in general, and communities impacted by HIV/AIDS in particular.
Without very effective self-advocacy, PLWHA often have great difficulty
realizing the benefits of these programs. The need for specialized
assistance in leveraging these services is the fundamental motivation
for advocates who seek some limited capacity for CARE-funded rehabilitation
and employment services.
Don't the "Ticket to Work" and "Work Incentives Improvement
Act" programs under the Social Security Administration provide sufficient
assistance?
No. The Ticket to Work and Work Incentives Improvement Act of 1999
(TWWIIA) provides important reforms to work incentives available
to Social Security recipients, including "easy-back-on" provisions,
an elimination of work-related Continuing Disability Reviews (CDR),
extended Medicare coverage, and a provision allowing states to create
"working while disabled" Medicaid buy-ins. These improved work incentives
create the context in which many PLWHA are willing to take the risks
associated with seeking employment.
The "Ticket to Work" program offers the possibility of greater
consumer choice in identifying rehabilitation service providers.
However, there are no guarantees that these providers will know
anything about HIV or the work-related needs of PLWHA. Moreover,
the program assumes that providers, called Employment Networks (EN),
will have the wherewithal to wait the years it might take for reimbursement
under a highly problematic formula. For many AIDS service organizations
interested in providing work-related services, this reimbursement
formula makes the program an irrelevant source of potential revenue.
Furthermore, "Ticket to Work" reimbursement relies on the achievement
of employment that leads to suspension of benefits – leaving
out those who need access to vocational services which might yield
unpaid work and/or limited employment intended to subsidize financial
benefits. As of spring 2003, less than 1 percent of disabled beneficiaries
who had been mailed their Tickets actually assigned their Tickets
to an EN.
Why should we add Transition to Work as a permissible
service under the Ryan White CARE Act?
Services rendered under the CARE Act were originally designed within
a context of crisis– one that held little hope for stabilization
or improvement of health. We had little expectation that a majority
of those PLWHA needing services would have the potential to live
for decades after diagnosis.
Now that we recognize that the HIV disease process is neither stagnant
nor one of inevitable decline, HIV services need to be re-engineered
to reflect the new realities of the illness. Rather than anticipating
(and at times creating) increased services dependency over time,
the system needs to be changed to optimize autonomy and self-sufficiency
whenever possible. Those who are wholly dependent on services may
need support in recognizing their capacity for achieving greater
autonomy, and assistance in developing necessary strategies and
skills.
Services must always be delivered within a context of consumer
control and consumer choice, one which recognizes a full spectrum
of desirable outcomes including paid and unpaid work, full- and
part-time work, work that includes benefits and work that is done
while receiving Social Security benefits. Engagement in productive
activity has been demonstrated time and time again to carry many
and substantial benefits to people living with a wide variety of
disabling conditions, including social integration, diminished isolation,
improved sense of purpose and identity, improved mental health and
quality of life, routine and structure to one's time, etc. In addition,
targeted research efforts may demonstrate that structured engagement
in vocational and employment activities positively impact health
outcomes.
Finally, it needs to be stated that a growing population of PLWHA
relies on the CARE Act for a broad range of health and social services.
"Transition to work" services provide an avenue for compassionately
reducing CARE Act caseloads by supporting improved autonomy for
those individuals who want to and are able to make such changes.
This can redirect diminishing resources towards those whose medical
status makes them least able or least likely to care for themselves.
Just as expenditures for benefits counseling and advocacy services
have ensured that the CARE Act is the payer of last resort, local
communities who choose to leverage CARE Act funds for transitional
services may discover that they are better able to serve those most
in need.
Patching the Medical Safety
Net
By Thomas P. McCormack
It's true that there's now a fairly comprehensive — but terribly
complex and hard-to-grasp — set of federal and state laws and
rules that encourage disabled SSDI and SSI recipients to try returning
to work. (Email the author at tomxix@ix.netcom.com
for a detailed paper summarizing them and offering case management
suggestions and further resources.) But all these bureaucratic
protections still fail to solve the greatest fear of disabled persons
thinking about trying to work again: "What if I try to work again
and someone at Social Security says that I'm no longer disabled
enough to stay in the system? What guarantee do I have that I won't
lose my medical care?"
Actually, Congress did offer states one way to meet this fear in
a little-known provision of Section 202 of the 1999 Ticket to Work
and Work Incentives Improvements Act (TWWIIA). That section is best-known
for giving matching funds to States that offer Medicaid, at small
premiums, to working persons with medically disabling conditions
with earnings up to at least 250 percent of poverty (about $46,000
a year for one person in 2004), or even more. And Section 204 says
that states can, on a demonstration project basis, give Medicaid
to "pre-disabled" workers at risk of full disability, also using
those generous income rules. States can even get extra federal money
by offering one or more of these options. Yet as of early 2004 only
Mississippi and the District of Columbia (for HIV-positive persons);
Rhode Island (for multiple sclerosis patients); and Texas (for schizophrenia
and bipolar patients) had successfully applied for such funding
— and Mississippi alone has fully implemented the coverage.
This leaves about $100 million authorized and available for such
patients but unclaimed and unused by the states.
Furthermore, all states that cover the main, basic option under
TWIIA can also give Medicaid under the same rules to eligible workers
who recover from their disabilities while in the basic Medicaid
working disabled program as long as they still have a potentially
serious condition (like HIV or chronic mental illness). Again, few
states have implemented this important Medicaid coverage option.
And here, too, extra federal money is available to help states do
this.
To fully guarantee that the medical coverage safety net for those
attempting to return to work is stronger and surer, disabled persons
and their advocates need to make at least two things happen: First,
they must lobby their states to offer coverage for the working fully-disabled.
Second, and most important, they must lobby their states to offer
coverage under Section 202 for "ex-disabled" persons — which
would guarantee health coverage to anyone leaving SSDI or SSI to
try working, even if they're found to be no longer disabled!
And to really put the icing on the cake, disabled persons and their
advocates can also press for two more reforms: State Medicaid coverage
of working "pre-disabled" persons under Section 204 of TWWIIA; and
getting Congress to permanently extend Section 204 past its scheduled
"sunset" at the end of Fiscal Year 2006 — because doing so
would accomplish much of what the HIV community hopes to obtain
from the Early Treatment for HIV Act (ETHA).
Thomas McCormack is Public Benefits Policy Consultant to the
Title II Community AIDS National Network (TIICANN; www.tiicann.org)
in Washington, DC.
States
Offering Medicaid to Working, Fully Disabled Person Earning
up to $46,000 per Year |
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Illinois
Iowa
Indiana
Kansas |
Louisiana
Maine
Massachusetts
Minnesota
Mississippi
Missouri
Nebraska
Nevada
New Hampshire
New Jersey |
New Mexico
New York
Oregon
Pennsylvania
Texas
Utah
Vermont
Washington
Wisconsin |
States
Offering Medicaid to a Working "Ex-disabled" Person Earning
up to $46,000 per Year |
Arizona
Colorado
Connecticut
Indiana |
Kansas
Pennsylvania
Washington |
States
Offering Medicaid to a Working "Pre-disabled" Person with
HIV Earning up to $46,000 |
Mississippi |
District of Columbia |
Approval of Sculptra Recommended
By Bob Huff
One of the more disabling side effects of antiretroviral therapy
is loss of fat in the face known as facial wasting, or lipoatrophy.
Fat loss in the cheeks and temples has been associated with the
use of nucleoside reverse transcriptase inhibitors (NRTI) and most
strongly with the use of Zerit. Many people who have enjoyed a dramatic
recovery of health after starting therapy have found that the onset
of facial wasting can be as identifying and stigmatizing as the
wasting of AIDS. Some people with severe facial wasting have reported
being unable to leave the house and conduct their normal business
due to depression and extreme discomfort about their appearance.
For many people with long-term exposure to HIV drugs, facial wasting
has posed a significant barrier to fully participating in society
or returning to work.
On March 25, 2004, an advisory committee to the Plastic and Reconstructive
Surgical Devices Branch of the federal Food and Drug Administration
(FDA) met to consider the evidence submitted in support of a new,
implantable substance intended to build up fat-depleted tissues
in the face. The substance, poly-L-lactic acid, is called Sculptra
by its sponsor, Dermik Laboratories, although it has been better
known in Europe and in HIV community press reports as New-Fill.
The proposed indication for Sculptra is to "correct shape and contour
deficiencies" resulting from facial fat loss in people with HIV.
The FDA granted an expedited review of the Sculptra application
because they felt the product addressed a debilitating condition,
represented an unmet medical need, and was in the best interest
of patients.
According to observers at the hearing, despite a rather sparse
presentation of data demonstrating the efficacy of Sculptra, it
may have been dramatic testimony by individuals who had suffered
the debilitating effects of facial wasting and who had benefited
from treatment with the product that convinced panel members to
vote for approval in the "best interest of patients."
Did it Work?
In a 50-person French efficacy trial, the main study outcomes were
total cutaneous thickness (TCT) as measured by ultrasound and a
series of photographs taken at baseline and after various stages
of treatment. TCT generally showed the greatest improvement early
in treatment and the selected photographs presented could be described
as convincing demonstrations that the treatments were effective
at restoring a normal appearance in the cheeks. Patients also reported
improved quality of life soon after receiving treatments. A 30-person
study conducted in London produced similar improvements in skin
thickness and patient satisfaction as well as reductions in depression
and anxiety. In several open-label U.S. studies, photographs showed
less striking changes than were seen in the French photos; nonetheless,
patient satisfaction with the treatment was high.
The FDA and the panel was generally convinced of the product's
safety. Only a few adverse events associated with Sculptra have
been reported, primarily bruising, injection site reactions or the
development of nodules or granulomas at the injection site. Poly-L-lactic
acid is a synthetic polymer supplied in the form of microparticles
of irregular shape that are injected below the skin. Eventually,
the substance seems to degrade into harmless chemicals within the
body. Unfortunately, gradual degradation may mean that periodic
touch-ups will be required to keep treated areas from fading away.
Longer-term studies will be needed to address this concern. Additional
questions about cost and recommended training for providers who
will administer Sculptra are still to be determined.
I delivered my story about how I wanted to remain anonymous
with this disease and how lipoatrophy stripped me of that
ability... How, if it wasn't for lipoatrophy, I could essentially
live a fairly normal life with HIV. How people who were unaware
of my diagnosis, such as family members, friends and co-workers,
became concerned about my "failing health" and how I passed
up consulting job opportunities since I would never be comfortable
with face-to-face interaction.
– "Anonymous," on her testimony
to the FDA panel. |
Why Work?
By Karen Escovitz
Work is the single most normative experience for adults in our
society. It is not a marginal or "special" issue. It is a central
issue for most HIV-positive people just as it is for most other
people. It is of critical importance for HIV-positive people who
are not symptomatic, for those who are symptomatic but not disabled
enough to qualify for disability benefits, for those who receive
disability benefits but who want to do more with their lives, for
those who cannot subsist on the pittance they receive from Social
Security, for those whose futures are restored to them (whether
temporarily or permanently) by successful treatment, and for those
who want to make a positive contribution to their communities and
to society. It is of critical importance for all HIV-positive people
who do not want to be perpetually marginalized.
We know from research with people with other disabilities and chronic
medical conditions that work provides structure, opportunity for
social integration and support, distraction from symptoms, a sense
of purpose and identity, worth and fulfillment, opportunities for
growth and learning as well as income that enables a person to be
a consumer of more than just services. We know that work is key
to recovery from depression and other mental illnesses, that working
decreases dependency on service systems and reduces the need for
crisis-level services. The research is starting to verify that people
with HIV benefit similarly from work, whether full-time, part-time,
paid or volunteer.
As the experience of this virus is changing for so many, there
is a strong need for the HIV services and research world to catch
up. I would not suggest that we abandon issues like housing, nutrition,
prevention or primary care. Unfortunately, I believe there will
always be people who need those immediate services to meet immediate
needs. Nevertheless, the time has come for us to equip ourselves
to help HIV-positive people imagine, plan for, and move into their
futures. And if we believe that individuals have futures, most of
those futures will have to include work.
The good news is that there is starting to be good research and
practice information available on how to provide effective employment
supports. There are a few places around the country where people
are really benefiting from good programs. Whenever I meet colleagues
who are involved with efforts to help HIV-positive people with employment,
we lament that we all have the same difficulties. We find that work-related
issues are barely represented on the schedules of the major HIV
conferences, work hasn't made its way into funding priorities, it
is not high up on the service agendas — yet consumers in our
communities are expressing an overwhelming need for help with employment.
In Philadelphia, where we ran Project KEEP (the Kirk Employment
Empowerment Project), the vast majority of our participants were
African-American or Latino, from impoverished and under-resourced
communities; and most experience multiple barriers to employment
including concurrent mental illness and/or substance abuse, history
of incarceration, homelessness, etc. Many were gay and a few were
transgendered. Some lived with other disabilities or medical conditions.
Nearly all of them lacked important information and support to navigate
complicated benefits situations, negotiate for job accommodations,
or help them manage the barriers well enough to pursue their own
employment aspirations. The HIV service system seems to be doing
a pretty good job of providing most of these folks with decent medical
care. They have case management to help them with housing and nutrition
and transportation and other immediate needs. But they see work
as a key to their future, and there are few currently in the HIV
service system designated to help with this.
It seems to me that if treatments continue to be as effective as
they are now, or more so, there will be increased need for services
and supports that are future-oriented, rehabilitative in nature,
and focused on moving consumers into increased self-reliance, autonomy
and self-management. If so, employment is key, and we will all need
to know as much as possible about it.
Karen Escovitz, MSS, is a project director at the Matrix Center
@ Horizon House, Inc. in Philadelphia. karen.escovitz@hhinc.org
© 2004 Gay Men's Health Crisis |
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