www.ontheten.

org
The Newsletter of Treatment Educat10n Network—TEN
SIN Colorado is a Gay Poz Men’s
Social Network supported by
Treatment Educat10n Network
The Women’s Lighthouse Project
Upcoming & Recurring Events
Says Goodbye
Sunday Coffee Talk/Brunch By Shannon Behning

D
Panera, 13th & Grant Street ear friends, colleagues, community members, and most especially,
First Sunday of each month 11am to 1pm
women living with HIV that have been served through The Women’s
Free Yoga Lighthouse Project: In early 1997, four women from Denver created an
Tuesday 4:30pm (2670 Gilpin) amazing team and submitted a grant to WORLD (Women Organized Responding
Wednesday 5:15pm (770 Broadway) to Life Threatening Diseases), hoping to be chosen to implement their HIVU (HIV
Saturday noon (770 Broadway)
Yoga Questions? Call Phil 303.358.3563 University) program.

This team was the first chosen from many

WINTER 2010 applicants across the United States to
VOLUME III, ISSUE XI travel to WORLD’s offices and spend eight
days receiving training on developing this
INSIDE THIS ISSUE exciting program for Colorado. Mary Ross,
LIGHTHOUSE PROJECT SAYS GOODBYE 1 a former LCSW from University Hospitals
WE OWE THIS TO OURSELVES _______ 2 ID Clinic, and I jumped on that plane and
THE C-WORD ____________________ 2 headed west.
COMPAS ______________________ 3
VIP FOR HIV ____________________ 3 I remember when I entered the room for the first day of training, as women began
EMBRACING CHANGE ______________ 4 introducing themselves and stating that they had been living with HIV for eight,
THANK YOU CYCLE SLUTS __________ 4 nine, or even 10 years or more. I had just “celebrated” my 5 year diagnosis; this
IF I CAN SAVE ONE LIFE ___________ 5 was one of my own moments of hope that I could survive this.
THE HOPE PROGRAM AT CHIP _____ 6
ROCKY MOUNTAIN CARES __________ 6 When Mary and I returned, we met with the other two members of our team,
RISK OF ACQUIRING SYPHILIS _______ 8 another HIV positive woman and MeriLou Johnson from the AIDS Education and
STRENGTH _____________________ 10 Training Center. Mary and I shared what we had learned and what we wanted
GOT NEG FRIENDS ____________ 11 and needed to do for the community of HIV positive women in Colorado.
MEET CHIDINMA _________________ 11 (continued on page 9)
MEET NKECHI __________________ 11
CAP WOMEN & FAMILIES _________ 12
DISABILITY QUALIFICATION PWHAS _ 14 ! IMPORTANT ALERT !
CALENDAR ___________________BACK
ADAP PROGRAM CHANGES IN 2011
We strongly urge you to attend a Special Information Session
MISSION STATEMENT (a special Community Educat10nal Forum)
The Mission of OnTheTen Newsletter
Tuesday January 11th 2011 6pm
is to provide educat10n and information (complimentary dinner followed by presentation)
for HIV-positive individuals in Colorado Our Saviors Community Room * 9th & Emerson (enter on the side from Emerson)
The publication is a peer-based
collaborative effort, and we encourage All the information about the changes & programs will be presented by Bob Bongiovanni,
material written and contributed by poz Manager of HIV Care and Treatment; and Todd Grove, Insurance Assistance
individuals to achieve our goal of being Coordinator; both from the Colorado Department of Public Health & Environment.
“by the community, for the community.”
Up until now, no one has paid for medications from the Colorado AIDS Drug
We believe that “knowledge is power”
Assistance Program (ADAP), and very few persons with HIV could get individual
and that HIV positive individuals
health insurance. 2011 will bring a new era for ADAP.
have a lot to learn and gain from each
x Some current enrollees could get health insurance, with ADAP assistance.
other by sharing their experiences
x Some may begin making monthly payments to stay on ADAP.
and information. In addition, we strive to
x Lower income ADAP enrollees will stay "as-is".
empower individuals to be proactive in
x These changes are being implemented very soon.
their mental and physical health
and well-being. x How will this affect you or people you know? Come find out.
 We Owe This To Ourselves
By Rod Rushing

A
s the 1st decade of the 21st century recedes into the to be healthy, to contribute, to overcome -even to surpass.
background, I am humbled by the myriad of events And it can be done on your own terms.
that have transpired. The toppling of the twin towers.
Americans elected an African American president. A I dare say (following the lead of sage Pat Gourley) that a
national discussion on gay marriage as well as a thoughtful cure could readily be in sight this coming decade. Until that
and long-overdue mentoring campaign for struggling lgbt time, TEN hopes to continue to bring to light these individual
youth was started by Dan Savage. Sobriety and recovery stories of strength and triumph. Courage is rampant among
entered my life after it had become a grass roots national our poz community, but not often recognized. I believe not
movement. And the conversation around HIV shifted only that we were once heroes, as Mark S. King so lovingly
from what’s not working to what does work including the states, but that there are still many, many more heroes
challenges of aging with the virus. among us. Certainly this includes you, doesn’t it?

Hopefully, this issue will

illustrate several local examples Since when did bullets stop to sing?
of these home-grown best-case
(It didn’t have to end like this)
scenarios (out of the thousands
here in Colorado). Pozlings who Is this the end of everything?
were once newly-diagnosed (It didn’t have to end like this)
and devastated souls have I feel, I feel, we can’t stop here,
confronted their fears, taken
I feel, I feel, we won’t stop here,
some punches, taken their
meds, and found a way to let It didn’t have to end like this,
their inner lights shine. This We owe this to ourselves,
remains the story of the decade We owe this to ourselves,
in my eyes. There is recovery from alcohol and drugs and
We can’t just let this go,
then there is this recovery from the depths of diagnosis.
Anberlin
Story after story, issue after issue, TEN highlights local
examples of a how-to guide to personal success. If you find
yourself reading this, take note- it is completely possible

The C-Word
By Pat Gourley

T
he most effective ways to address HIV infections in late 2010 remain staying uninfected and if you are already
infected getting on medications as soon as possible. The evidence for early intervention is now convincing but
decades of being on the available potent chemotherapeutic agents certainly has its downsides.

What has proven to be very illusive over the past thirty years is of course the C-word, a cure. In the
1980’s it was felt by many activists involved in the epidemic that it was simply a matter of will, the
willingness to devote adequate resources and a cure could be found. Many felt that all that kept this
from happening was that it was infecting disenfranchised populations who lacked the political clout
to mobilize enough resources make it happen. If only straight white men had been a significant
at-risk-group. Though the analysis that it was infecting the powerless still has some cache and
credibility it also turned out that this little virus was very crafty in how it infected human beings.
Western medical hubris aside this was a daunting infection that the science of the early years was
simply not up to solving.

The reality of how our very sophisticated immune systems handled this particular virus was different
and in ways less “effective” than how other viral infections were handled. The virus has the ability
to hide away in a dormant fashion in reservoirs that the current medicines can’t crack. The current
therapies do a great job of keeping the amount of circulating virus in the blood very low but if they
are stopped the virus comes quickly out of hiding.

In the last few years however there has been resurgence in the effort to find a cure and certain of
these efforts look quite promising though severely under funded. This is where a resurgence in AIDS
activism is sorely needed at this time. The link below is to an organization based in Philadelphia
(continued on page 7)

2 Treatment Educat10n Network—TEN

 COMPAS
A
t the beginning of 2010, Denver Public Health initiated COMPAS, a support group for Spanish-speaking
men living with HIV. Though language appropriate HIV services and case management were available
in Denver for those who speak Spanish, there were limited options for support services.
Starting with a core group of a few clients receiving care at Denver Public Health, COMPAS began. (The word
“compass” means “buddy”.) With their own ideas, suggestions, and needs, the project began to take form
as these men met every other week. They talked about their own experiences. Some had never told anyone
that they were living with the virus. Others had distanced themselves from friends, experiencing isolation and
shame.
There were those who had grown accustomed with their life’s routine of work and sleep, never missing an
appointment with their health care provider nor a dose of meds, and resigning themselves to a life of limited
compas
friendships and abandoning the thought of a loving relationship. And there were those who because of
romantic heartache, depression, or substance abuse had been absent from care and meds for months.
The original plan for COMPAS was for the biweekly meetings to transition into monthly meetings for on-going support and education.
However, the group soon decided that they wished to meet weekly. They had discovered new friends who were experiencing things
similar to their own experiences. There were others who were living not only with the same virus, but also with the same feelings of
solitude and unvoiced sorrow. Some spoke of failed relationships and the difficulty of finding new ones. They discovered that they
were not alone and their journey was not unique. At the same time, however, there were those who spoke about how HIV had not
put an end to loving relationships with discordant partners. Others talked about long-term relationships that had endured despite
the stress of HIV. As the year progressed, similar journeys shared began to lead to new traveling companions and new reservoirs
of strength and courage.
The serious aura surrounding the HIV diagnosis began to be replaced by serious sharing, serious friendships, and serious laughter.
Though there was initial concern expressed that weekly meetings would soon lead to “burn-out” by participants, COMPAS grew
in cohesiveness and in numbers. As one of the “compass” wrote during the summer, “Though all of us have the virus, we are not
alone. Loneliness is the worst enemy that we have.”
In response to a question about what he considered to be the most important thing he had learned through participating in
COMPAS, another “compa” wrote, “I have learned to be more understanding toward my other friends. I have learned to be more
faithful to my meds. I have learned to be more relaxed with my own situation of being positive. I have learned to enjoy the company
of my ‘compas’. I have learned more about HIV.”
“For me, the most surprising thing has been the relationships that have formed among the group... because even though it is a
informational program, it is social. We learn but at the same time, we enjoy our time together; though we share the same infection,
we also share our lives and laughter.”
COMPAS is a support group for Spanish-speaking men who are living with HIV; weekly meetings are complimented by social
activities, educational forums, and mentoring. For more information call 303.602.3619.

VIP for HIV

By Scott McGlothlen

T
his last summer, I received a bit of a shocking surprise in the mail. I opened an unmarked envelope not sure whether
it was going to be an advertisement or anthrax. Even worse, it was an incredibly unflattering photo of me in my car.
Clearly I had been photographed by a speed trap and I must have hit their limit at a very awkward time. I had always
hoped that if this happened, I would look incredibly sexy while driving. But alas, my eyes were
nearly shut and my jaw wide open. It did not take a brain scientist to understand that I was clearly
singing in the photo. And there is only one band who can make me belt out tunes with a face like
that: The Dresden Dolls.
Many folks in Denver were lucky enough to get exposure to this band at Red Rocks in the summer
of 2007 during the first True Colors tour with Cindy Lauper. The Dresden Dolls describe their
music as “punk cabaret.” It has all the qualities of great show tunes with the essence of punk
rock. Imagine Liza Manilli meets the Ramones. The listener can rock out while they wail out to
lyrics in an exciting and vibrant sing-along kind of way.
The Dresden Dolls are made up of two parts. Amanda Palmer writes the music, plays the piano,
and does the vocals. Her lyrics are wittingly filled with modern references and double entendres
all while tied up in some unique emotional bows. The other half is Brian Viglione, the drummer.
While it seems like anyone could drum for a piano player, somehow it is his own persona that
really seals the two of them as a one of a kind musical creation.
(continued on page 6)

Treatment Educat10n Network—TEN 3

 Embracing Change
By Rev. Jim Chandler

A
s we move through this winter there is no better time to recognize the powerful and dramatic changes taking place.
This change is touching those living with HIV/AIDS more profoundly and we are in the midst of that change. There
has been a change in the face of disease and the way it is managed.
I remember, over 20 years ago, a medical doctor I knew returned from a world conference on AIDS. Upon returning we
talked about what transpired there and he showed genuine excitement as he exclaimed that as of that week a major
breakthrough had been made. He went on to state that for the first time the medical establishment wasn’t referring to the
disease as a “terminal disease.” For the first time the pandemic was now being referred to as a “manageable condition.”
His excitement was based upon this change in thinking that for the first time death was not being discussed as a certainty,
but rather that the condition was something to be dealt with.

At the time I don’t think I fully realized the shift which had taken place, but he was right. We have all heard the statement
“change your thinking, change your life.”
This perspective was being applied to persons with HIV/AIDS who were surviving longer. Even their caregivers were
looking at the disease differently, the research started changing, and lives of all types which were touched by HIV/AIDS
took a new path and a new enthusiasm of the possibilities which lay ahead. The possibilities of what could be done
started to flow.
Right now we are going through another one of those shifts involving the entire world. The
creative power of thought, faith, and possibility thinking has found a new place in our world.
We are no longer held back by what had taken place in the past. Whether the conversation is
about politics and government, business and trade, health and illness, relationships and its
many individualized forms, science and the environment, religious traditions and spirituality,
or just life itself in it’s many forms, change is happening.
For the first time change is truly something to be embraced. As long as we are willing to
embrace change we will find a future far surpassing what we have created in the past. Those
of us stuck in old thinking, refusing to step out onto unformed potentiality, will be left behind.
The rest of us will live in a new world. We should no longer state that “I will believe it when I
see it,” but change that old way of thinking to “I will see it, when I believe it.” This is the power
in embracing change.

Thank You
Cycle Sluts!

T
EN would like to thank the Denver Cycle Sluts for their
incredible support of the HIV Retreat at Shadowcliff.
In the last year, they raised $3500 at Bingo Nights and
Shows that were designated for The Retreat.

We applaud their targeted

support of smaller organizations
with limited financial resources
and smaller revenue streams.
2011 HIV Retreats at Shadowcliff CS Bingo benefits a different
charity on the second Friday
July 28-31 & August 18-21 of every month at Hamburger
Mary’s
Shadowcliff Lodge
for more info visit:
Grand Lake, Colorado www.denvercyclesluts.net
A 3-day weekend retreat in the mountains. Check it out: OOOH SIXTY
More information and registration at: NINE !!!

www.OnTheTEN.org/retreat
or 303.377.3127
4 Treatment Educat10n Network—TEN
 “If I Can Save One Life”
By Penny DeNoble
“If I can’t have you, then no one else will!,” is what she said to it’s not you they’re rejecting, but Me in you, and they’re the
me when I told her I no longer wanted to be in a relationship ones who have the leprosy.” Wow! Well, after hearing that
with her. And she made good on her threat. She “outed” me/ exhortation of reassurance from The Creator of the Universe,
disclosed my status to many people in the Black Lesbian I was greatly encouraged and it gave me the strength to
Community at the time. Whenever I’d go out to social events, get up in front of a room full of women and begin to tell my
I would see the whispering and the finger pointing at me. No story publicly, for the very first time! As I was nearing the
one took the time to come up to me and ask questions or end of my talk, I again heard The Voice say, “Now invite the
offer help or comfort, or anything else; they just ostracized, women to come up and lay hands on you and pray for you.”
judged and treated me as if I had the plague. That was a tremendous risk for me because it triggered the
memory of how I was treated by the women of my former
As a result, I began to isolate myself. My life consisted of social community and I was AFRAID! I was about four years
going to work and going home and hiding away. into my diagnosis and I had never asked anyone to pray
for me because rejection is not pleasant… nevertheless, I
This proved to be a detriment more than an asset because trusted and did what I was told to do, not expecting anyone
I realized that I was dying….dying from a broken heart and to come forward. When I did, I was engulfed by a room full
the self-inflicted shame I had taken ownership of. I began of women who were weeping with me and so filled with love
to lose weight; I stopped eating; I stopped smiling and I and compassion for me that I was so totally overwhelmed
stopped reaching out for support. I believed in my mind that with wonder, awe and gratitude!!! That day I knew it would
I didn’t really need anyone anyway, and I could navigate this be OK; I would be OK and my journey of inner and physical
unknown world of HIV all by myself. I was wrong. I realized healing had begun!
I did need community. I did need love. I did need support,
but I was just unsure about how to go about getting it, so I As we returned to our normal lives after the retreat, a woman
suffered in silence. My life began to ebb away and I didn’t in my spiritual community would seek me out and say to me,
know what to do about it. “I love you!,” and I would respond in kind. But she would
emphatically say, “No, I REALLY love you and one day I’m
One fateful day, I was out walking (alone and in despair) and going to take you to lunch and I’m going to tell you why!” That
I heard The Voice say to me, “Penny, you’ve tried everything day arrived and as we sat and talked, she told me, “When you
else and now it’s time for you to come home.” I knew The shared your story that day, you saved my life.” She went on to
Voice; I didn’t have to question it, and I knew where home say that after the women’s retreat was over she was going to
was. The Voice was the Voice of God inviting me to come back go out and kill herself. She said she had a plan, had already
under the protective, healing wing of His Mercy, and Home written the note and had even pinpointed the day she would
was getting me plugged back in to a spiritual community. do it. She said that after hearing me courageously tell my
story that day, she realized there were people in the world
I knew that was the lifeline I needed to find me again and who were suffering with issues far greater than her minor
begin the healing process even though I was unclear about physical pain and if I could courageously stand up and tell
what that was supposed to look like, but I was hopeful! my story, not knowing the outcome of people’s responses,
then she most certainly could live.
I found a spiritual community that embraced me, loved
on me and I felt the life force begin to re-enter my body. I Needless to say, goose bumps traveled down my body and I
established close relationships with a few women in the wept! I wept because of the impact my story had on someone’s
community, one being the Senior Pastor’s wife, and I knew life, but I wept also because I thought of the potential impact of
she was someone safe with whom I could share my status, how being paralyzed by fear of rejection and self-preservation
my pain and my journey. could have had. I thought that if I would have allowed those
thoughts and emotions to dictate my behavior that woman
Years later, I began feeling a stirring within the very core of could have taken her life and I shudder to think of the blood
me, preparing me to share my story and I began to quiver in that could have potentially been on my hands!!
fear, thinking, “There’s no way!” Shortly thereafter the Senior
Pastor’s wife approached me about being the guest speaker That day I resolved that I would forever
at a women’s retreat that we were going to be attending, and commit to telling my story, no matter
I told her, “Thanks, but no thanks!”, and she would not allow how uncomfortable it may be for me!!
that to be my final decision. Every time she would approach I committed to dedicate my life to help
me, my answer would be the same and her response would save lives. If I can save one life by the
be the same (thank God for her!) telling of my story, then that’s what I’ll
do. That was over 20 years ago that I
The time of the retreat and the appointed day I was scheduled was given the incredible privilege of
to speak came, and I was again quivering in fear and had saving one life and shall continue to
worked myself up mentally that I became physically ill. Once commit to help save lives, simply by
again, The Voice spoke to me loud and clear and said, the telling of my story!
“Penny, you HAVE GOT to do this! And if they reject you,
Be Well! Go Well! Live Well! Love Well!
Treatment Educat10n Network—TEN 5
 The HOPE Program at CHIP VIP for HIV
(continued from page 3)
The HOPE Program was started in April 2005 as a collaborative After the True Colors show, I got a chance to briefly get
effort between the University of Colorado ID Group Practice autographs and a snap shot with Amanda and Brian amongst
and CHIP Program to serve persons living with HIV who a mob of other fans. Although the quick meet was not intimate,
wanted to explore options for parenting. HOPE’s mission is it was still one of the most exciting moments of the summer.
to provide comprehensive reproductive health counseling Unfortunately, I did not know that HIV was secretly surging
to individuals and couples who are hoping to conceive, and through my body at the time. I felt on top of the world while
prevent transmission of HIV to both uninfected partners and hell was breaking loose in my veins. A couple months later, I
newborns.
received my diagnosis.
Since it’s inception, the HOPE Program has counseled 51
individuals/couples (as of December 2010). Among these Similarly to others initially diagnosed with HIV, I faced major
couples, 30 couples/individuals sought counseling where depression. However unlike most people in my shoes, the music
only the male partner was living with HIV, 17 couples/ geek in me turned to song for the emotional treatment. And
individuals were seen where the female partner was positive, much of The Dresdon Dolls’ music took on new meaning for me.
and 4 couples were counseled where both parties were HIV I connected in new ways with songs about life not happening in
positive. The HOPE Program has assisted in 12 pregnancies perfect, chronological order. I now understand other songs that
with 10 live births. There have been no reported cases of HIV tore into the notion of living with a complicated body that just
transmission among partners and/or infants of families who won’t seem to fix itself. Even if they were not meant to, so much
have received consultation with the HOPE Program.
of their music seem to speak to me about my experience with
Moving forward, the HOPE Program continues to review the HIV. I would often curl up in bed and put my headphones on,
most current treatment options and strategies for persons listen to their music, clutch onto my pillow, and cry.
living with HIV, to continue the goal of offering persons the
opportunity to grow their families. Amanda and Brian went on to split as a team in order to work
on their own projects. Ms. Palmer released a solo album with
For more information, please contact: Ben Folds titled “Who Killed Amanda Palmer?” It was dark,
The Children’s Hospital poetic, ironic and best of all still relatable. And I continued to
Attention: Jennifer Pappas connect with the music in a way that I wouldn’t have if it were
13123 E. 16th Ave B055, Aurora, CO 80045 not for the HIV.
720.777.2841 Fax 720.777.7294
[email protected] In the fall of 2010, Amanda and
Brian got back together for a
10th anniversary tour. However
the tour would not be stopping
in Denver. While I liked them
both individually, I knew this
could be one of my last chances
to see them as a team. Luckily,
a long distance friend, who was
Women’s care at Rocky also a fan, agreed to meet me in
Mountain CARES Atlanta to see their show.
By Benjamin Young, MD and Myra Young, DNP But I knew that with all that I had been through, I needed to be

R
ocky Mountain CARES is Colorado’s newest non- able to meet them for actual moment rather than a few second
profit comprehensive HIV prevention, education, photo opportunity.
treatment and research center. RMC was established
in 2009 with the mission to provide the highest quality A week before Atlanta, I emailed the address given on their
individualized comprehensive care, treatment, supportive website for fan contact. I wrote a brief story of how their music
services and education for those affected by and infected helped me struggle with my HIV, that I was traveling to Atlanta
with HIV in the Denver metropolitan area. to see their show, and that I would like to meet them in person.
It was a long shot but I had to try it. To boost our chances,
As HIV specialists with over 20 years of experience, we my friend and I got the people in our lives to sign a petition to
provide ongoing care for approximately 800 individuals, support our meeting with The Dresden Dolls. I attached it to the
including a steadily growing number of women clients. Our email and hit send. Later that evening, I checked my in-box and
care management and clinical services are provided within had a crushing delight. There was a response from Amanda
a single facility by a dedicated team of physicians, a nurse Palmer. I excitedly opened it only to find out that it was an auto-
practitioner, and care managers. We provide timely linkage response. She wrote that she checks all fan mail but due to the
to client services, peer-education and medical care in an overwhelming amount she gets, it could be up to a year before
individualized, non-judgmental environment that is safe she responds. I could not wait a year. The show was happening
and compassionate, ensuring human dignity and freedom in one week.
from stigma and discrimination. (continued on page 7)
(continued on page 8)
6 Treatment Educat10n Network—TEN
 VIP for HIV The C-Word
(continued from page 6) (continued from page 2)
I continued to check my email constantly, even peering into and San Francisco called the AIDS Policy Project. All of us
the junk box to see if I had missed anything. Nothing had currently infected with HIV owe it to ourselves to become
come in. On the afternoon of the show, I checked it one familiar with and hopefully participate in their efforts.
more time with a small glimmer of hope. Again, there was
nothing. But this was okay. Because on this night, even A recent case of a German man with HIV and leukemia who
with a filled concert venue, I knew that The Dresden Dolls was treated with a bone marrow transplant for his leukemia
would be playing just for me. resulted in a resolution of not only the leukemia but also
seemed to clear his body of HIV. Now three years out this
While waiting for the actual concert to start, I began feeling man remains free of HIV and is considered to have been
impatient and decided to play with my phone as a means cured. In research parlance this is referred to as “proof of
to kill time. I hit the email button on the phone not really concept”, in other words a cure is possible.
expecting to see anything. But I noticed a name popped up. I
had never seen this name before but I recognized the subject There are currently two cure approaches being looked at.
line. It was what I had titled my email to Amanda Palmer. I The first is referred to as a functional cure and this involves
opened it quickly. It was from her assistant. She started off the immune system being able to control HIV without
by apologizing for the last minute notice but wrote that there drugs. The second approach is called a sterilizing cure
were two VIP passes for my friend and I at the box office. that would be no HIV in the body any more at all. This is
“Oh my God,” I gasped out loud. My friend leaned over my applicable to the Berlin man and I would again refer you
shoulder. “What is it?” He asked. to the website below for some easy to understand detail
around this case.
I turned the phone to show him. His response mimicked http://www.aidspolicyproject.org/
mine. We both began squealing out of excitement. Neither
of us had been VIPs before and did not really know what Certainly bone marrow transplants are expensive and no
this meant. I told him to stay there and save our spots. I ran walk in the park from a patient perspective but the cost
back to the box office and awkwardly told them that I had I saw quoted was $100,000. That is not chump change
just been notified that I had two VIP passes waiting for me. but the non-generic cost of HIV medicines in this country
They asked my name and when I said it, the woman behind is often $15,000-20,000 per year. You do the math but it
the glass began to smile. She didn’t say anything, but her doesn’t take too many years to hit that amount.
smile clearly said I’m so excited for you. The man asked to
see my ID and upon inspection, he handed over the passes. Initially effective cures may be expensive but then so were
They were not extraordinary. But for me, they were one of (are) protease inhibitors. Outside the U.S. many AIDS
the most exciting things I ever held in my hand. medications are now available in generic form though and
not prohibitively expensive. The very sad reality of course
I ran back to my friend hoping no one had worked their
is that millions still do not have easy access to even these
way into my spot. The show was about to start at any
generic medications. Though daunting the initial monetary
minute. I handed him his pass and we discretely admired
investment in finding a cure should not be prohibitive and
them, not wanting any other nearby fans to know of our
may prove a more realistic avenue to all infected than the
new opportunity. We joked that neither of us could lose
current lifelong treatments.
them because we would absolutely have to go without the
other if that happened. I slid mine in my pocket. I kept my In a piece you can link to off the web site above the AIDS
hand tightly against my jeans; not for protection but as a Policy Project hypothesizes a couple reasons why the
reminder of what was to come. The lights dimmed and the pursuit of a cure has been so under funded and not getting
show began to start. the attention it deserves. The first is that hopes around a
lked on stage in their classic noir fashion. They held armfuls possible cure were raised repeatedly in the 1990’s but did
of flowers and launched them into the audience before not materialize, optimists got burned. The second is that
beginning their first song. The show played out amazingly. the drug companies that might be in the forefront of cure
They sang a mixture of classics combined with many research have found it more economically advantageous
unknown tracks and covers. The pair pitted their instruments to concentrate on the proven money-makers, current HIV
against one another to not only play their music, but to dare medications.
each other to make it amazing. And indeed it was. AIDS activism has a long and very successful history. The
activist agenda though has tended to be truncated in the
By the last song, both of us were exhausted and had to past decade or so due to the effective, though in many
honor the fact that we just were not as young as we used ways problematic, medications available. It is time now to
to be. As the crowd emptied the venue, we found a security reactivate front line efforts around the fight for a cure. There
guard and asked him how to use our VIP passes. He told us are numerous ways to get involved that involve little more
to simply wait outside of the door by the stage. We noticed than access to a pen and paper. Please again visit the web
there were a few other people with the same passes. I site below for ideas on how to get involved. There is also
wondered if they had diseases too. information at this site to flesh out many of the issues and
(continued on page 8)
prospects surrounding a cure for HIV infection.
Treatment Educat10n Network—TEN 7
 Women’s care at Rocky VIP for HIV
Mountain CARES (continued from page 7)
“So how do you know Amanda and Brian?” One girl asked us.
(continued from page 6)
Rocky Mountain CARES is associated with Denver Infectious “We don’t,” I said. “We are just fans.” She seemed a bit
Disease Consultants, housed on the Rose Medical Center surprised and probably further so when we pegged her
campus, one of the most experienced HIV practices in for details of how she knew them. Our conversation was
the region. We have partnerships with many community interrupted by Brian Viglione himself walking off stage and
organizations, including Planned Parenthood of the Rocky joining the few of us remaining. They all hugged and began
Mountains, Howard Dental, It Takes A Village, and many conversation as if they were all old friends. We stood there
others. We accept all insurance plans, including Medicare awkwardly and politely waited to introduce ourselves. It did
and Medicaid, and in some circumstances persons are not take a genius to tell that we were the only fans without
eligible without health insurance. any sort of connections.
RMC offers the following services: Brian greeted us in manner so friendly, it did not seem
• Care management designed to help clients navigate the like we were meeting a rock star. He shook our hands and
many issues of access to treatment and coordination of took our overly eager compliments. Before I could forget,
care. We can help in accessing Ryan White Assistance I lunged my arm forward at him to show off my tattoo that
programs such as financial assistance for medical I had gotten of their symbol. The symbol was an outlined
coverage, emergency assistance for rent, mortgage and combination of a heart, an airplane, an arrow, and a fountain
utilities, enrollment in ADAP, and pharmaceutical drug pen. It was always a beautiful image to me and their music
assistance programs. We can link you to legal services, had impacted me so much in my time of need that I only saw
and help you understand disability benefit programs, it fitting to get it scared into my skin for the rest of my life.
COBRA and CICP. We can assist you in accessing mental “Wow, that is awesome, man!” he said.
health and substance abuse treatment, transportation and
food assistance. We provide peer support through The I am sure I was not the first wacky fan to show up with their
NET and one-on-one mentoring, coordinate your care and image tattooed on them. But he was very gracious about it.
help you communicate with your healthcare providers. After a few more minutes of waiting around, Brian invited us
These services are partially funded by the Ryan White HIV/ back into the green room.
AIDS Treatment Extension Act of 2009, through the Denver
Office of HIV Resources. We walked in not knowing what to see on the other side.
It ended up being nothing much. The room was actually
• Education programs include peer-led support/education green and there were some unknown individuals sitting
with The NET to learn about HIV, and deal with stigma, and conversing on the couch.
isolation and other issues about living with HIV. The (continued on page 10)
NET offers both a “closed” 12-week structured program
as well as a weekly drop-in group. New in 2011 will be a
social networking group for positive women, and special Did you know the risk
August SIN/Forum Potluck BBQ
Michael, Eric, Monty, Rod, & Scott (seated).
programs for people struggling with issues of substance
dependency.
of acquiring syphilis is
increasing in Colorado?
• High-quality, individualized medical care utilizing the best
evidence-based treatments. Our aim is to prevent HIV- From January 1-September 30, 2010, there were 202 cases
related or treatment-related complications and obtain of syphilis reported. That is an increase of 39% from all of
the highest quality of life for all of our patients. We have 2009, and the year is not even over.
expertise in sexual and reproductive health for both
women and men, and offer a program in anal health care. Of those 202 cases, 9 out of 10 are gay men and over half
Through a grant partially funded by the Ryan White HIV/
are HIV positive.
AIDS Treatment Extension Act of 2009, granted through the
Denver Office of HIV Resources, we offer Early Intervention
Services for persons without medical insurance who are
recently diagnosed or who have not been in recent care to
provide no-cost counseling, support, laboratory evaluation
and medical care. The Northern Colorado Collaborative
Care Clinic is a partnership with Northern Colorado AIDS
Project and Salud Family Health Clinics that provides no-
cost care for uninsured, HIV+ patients in Fort Collins on
the second Monday of the month.

Please don’t hesitate to call let us know how we can help

you. Someone is always available. We look forward to
working with you to meet your health-care needs! You
can reach us at 303.393.8050, or visit us on the web at
rockymountaincares.org.

8 Treatment Educat10n Network—TEN

 The Women’s Lighthouse Project Says Goodbye
(continued from page 1)
We held several community forums with women living full of fear transform into a woman who can walk into any
with HIV. We shared what we had learned and wanted room, make her presence known and advocate for herself,
to provide for women here in Colorado. We were given a and seeing her realize that there is life after diagnosis, that
$5,000 grant to provide two educational series. We found she can survive this, that she is not alone That is why I do
a home in the PWA (People With AIDS) Coalition Colorado the work that I do. Now, in the fall of 2010, WLP has reached
and our work began. The first group of women to gather a point of having to make tough decisions. The economic
and go through the workshop series were12 strong, crisis that we find ourselves in has trickled down to WLP
incredible women. At the first meeting in the fall of 1997, and it is time to start a new journey.
these women chose the name they wanted for this group
and The Women’s Lighthouse Project was born. In March The Women’s Lighthouse Project will be closing
2010, WLP graduated the 27th group of strong, fabulous, our doors officially on November 30, 2010.
and incredible women! 270 women were served through During the month of November we will be making sure
this educational program. that every client has a plan on how to continue on her path
without WLP walking beside her. I am incredibly sad and
am reminded of sitting around that table in 1997, meeting
other women who are positive and living well and realizing
that I can survive this. That’s what inspired me to create
this program for the community of positive women here in
Colorado.
This is also why I’m not going away completely. The
Women’s Lighthouse Project’s web site will remain as well
as my phone number. I will continue to be an advocate for
During the summer of 1999, WLP held the first Statewide women, providing resources and referrals and information.
Summer Summit, an annual event reaching out to women I will always be just an email or phone call away.
living outside of the Denver Metro Area. 150 women were
served through this program. There are just too many people to thank for the continuous
love and support of WLP. But three groups of people I
In 2000, The PWA Coalition Colorado started the Peer cannot send this out without saying thank you.
Advocacy Project and WLP served the women clients,
which later resulted in the program known as the Client First, the Board of Directors, everyone who ever sat on the
Treatment Advocacy Project. WLP served over 200 women board gave completely and unselfishly to WLP and helped
in this program. with the moving forward of the organization.

In 2001, WLP began serving women at the Denver Women’s Second, the staff of WLP, Jackie Cole, Leslie Rogers,
Correctional Facility. Approximately 60 women were served Crystal Walker Fulton, Kara Schmitt and Fran Cordell. They
through this program. all gave 100% when working with WLP and added so much
to the programs and the agency.
WLP has provided countless educational programs and
opportunities over the past 13 years. WLP has worked with The last group of people to thank is the clients; you are
numerous other organizations around the state and the who we did this for. I know we have seen women take
country to provide services to women living with HIV. themselves from living with shame and fright to being bold
WLP has done well! We have helped women learn to sail and learning how to continue after a HIV diagnosis. I am so
their ships! We have tested partners, family and friends, proud of each and every one of you!
and the community free of charge. We have talked and THANK YOU from every piece of my heart, my soul
provided education at schools, businesses and even the and my spirit. Continue to be a beacon of light in
Art Museum when they held the HIV Awareness display. your own life and in others!!!
I could go on for many more pages and describe and recount Shannon R. Behning
the work that WLP has done over these past 13 years. I Founder and Executive Director
am so very proud of the work that WLP has done, but am [email protected]
mostly proud of seeing that woman who initially walks in for 720.331.0408
services, unable to lift her head up high, living in shame and

visit www.ontheten.org

visit www.beonecity.com
Treatment Educat10n Network—TEN 9
 Strength
By Deborah Johnson

M
y name is Deborah Johnson and I was diagnosed the rape I tried to push him away and he wouldn’t allow
with HIV in 1992, but I could have had it before it. He hung in there; he was a trooper. And for that I am
that. eternally grateful. We have been married for 28 years.

In 1989, I was 21 years of age and I was staying with Before the rape, I had a son. At the time of the rape he was
my mother. I had just come home after celebrating my 4 years old. After the rape and my marriage, my husband
21st birthday, on a Saturday night. I was so full of joy as and I had two girls. I conceived before I learned of my
I settled down to go to sleep! It was a great celebration diagnosis. Both of my daughters are negative and so is my
because my family was there and I was full of hope about husband, praise God!
what the future would bring. I went to sleep and woke up
with a knife against my neck and a pillow over my face. In 1992, I became ill with flu-like symptoms. I thought I had
Someone had broken into my mother’s house robbing her the flu and went to my doctor. She ran a variety of tests and
and robbing me. He violated me. It seemed like hours, but they all came back negative. The last 2 tests she ran were
it was just minutes. I passed out, woke up, and discovered for Hepatitis C and HIV. Two weeks later I was at home and
he was gone. I ran into my mother’s room and told her received a phone call from the doctor. She told me over the
what happened. We called the police and it seemed like phone that I had HIV. I knew nothing about HIV and didn’t
hours before they responded, but it was just 10 minutes. want to believe her because what I did know was that it
was a deadly disease, but I was wrong! I had an emotional
I went through a very traumatic period where I constantly breakdown and asked the doctor to tell my brother the
news. I was taking the news very hard and he was at my
asked God, “Why me?” My family was very supportive of
home and was able to receive the news far more coherently
me during this time. I had to see a psychiatrist and my
than I could. My brother called my family and friends that
mind would go blank. When I tried to talk to him about the
were in Colorado and had them come over to the house.
incident, all I could do was weep.
Once again, my mind went totally blank as he was sharing
the news. I sunk into another deep depression.
Even to this day, I still feel violated because the police still have
not captured the man who did this atrocity to me. 21 years later, I still struggle with
bouts of depression, but I’m staying
The only thing that helped me to move beyond that situation strong. I’m walking with faith, I keep
somewhat was to move out of my mother’s house and leave myself surrounded by people with
town for a few weeks. During my time away I felt safe because positive energy, I take my medication,
I wasn’t in that home where the violation occurred. and I attend various support groups
for women that empower me to be a
The other miracle that happened was that my relationship better woman who is living with HIV.
with God was strengthened and that helped me I am grateful for the support groups,
tremendously; it game me strength. Life for me continued my support system, my family, and
after the rape. I got married to a wonderful man who has God, who have all given me the
been great and very supportive of me since the rape. After strength to live with strength.

VIP for HIV

(continued from page 8)
Brian continued to have conversations with us and we wondered whether or not we actually would meet Amanda. Seeing as how
she was the one who wrote the lyrics I so heavily I identified with, she had become our main goal of the meeting.

Suddenly, the door open and Amanda Palmer walked out. Her hair was a mess. She still had not removed her swanky stage make
up. And she only wore a small red robe. She looked exhausted as she saw the few people waiting to meet her. But before she said
a word to anyone, her gaze fixated on my arm. Amanda seemingly floated her way over to me and without permission, grabbed
my arm. The tattoo of her symbol obviously caught her attention. She began twisting my arm and stroking it. “These are the most
beautiful tattoos I have ever seen,” she said softly. In her line of work, I imagine she sees lots of tattoos. “What does this one mean?”
She asked grabbing my forearm with the Aramaic Hebrew lettering. I was so nervous that I actually told her the wrong meaning. I
stumbled over my own words to correct myself. “No, I am sorry,” I laughed. “That is the wrong phrase. It says ‘bleed like I do.”

Before I could tell her it was about my HIV, she looked up deeply into my eyes. “I must have a photo with these tattoos!” she said.
I quickly tossed my phone to my friend being that it was the best option for a camera. He took a photo of her practically wrapping
herself around my arm. “That photo is bad ass,” she said grabbing the phone. “I am going to email it to myself, okay?” As if she had
to ask for permission. She clearly knew how to use an iPhone as she did not have to ask for directions. “Here,” she said handing
the phone back to me. “Type in your name in the subject line so I know who you are.”

I tried typing but my fingers were too jittery for the little touch screen key board. While I stumbled, my friend began praising her
for an amazing show. I could hear them connecting and laughing together as I tried to re-spell my own name multiple times. I felt
happy for him. By the time I finished and hit the send button, Amanda had started talking to some other VIP people. I quickly
(continued on page 15)
10 Treatment Educat10n Network—TEN
 Meet Chidinma

H
i, my name is Chidinma. I have been going to Camp Heartland
for two years. I love it! Camp is a safe place to talk about HIV/
AIDS. I am in the 4th grade. I am 10 years old. I have been living
with HIV since I was a little tiny baby. I got HIV from my mom breast-
feeding me. My mom didn’t know she had HIV/AIDS so she had to stop
breast-feeding. My dad had HIV. He lived in Lagos, Nigeria, West Africa.
Since they didn’t have the right medicine, he died. He died when I was
just a baby. I don’t remember him that well. When he died my mom was
heartbroken. Now I’m living a new happy life. One way to get HIV is by
sharing needles or breast-feeding at birth. It is important to take your
medicine so you will not get sick. When I was little I took liquid medicine.
Now I take pills; I take six pills in the a.m. and six and a half pills at night.
You don’t have to be afraid of people with AIDS. Thank you for listening.

“I Am” — By Chidinma, Age 9

I am nice and smart

I wonder how many animals there are
I hear beautiful Blue Jays tweeting
I feel sad when the dark winds blow
I see wolves hunting in the woods
I want to explore the world

I am a person who loves nature

I sometimes pretend I am an owl
I dream that I’m an Eskimo
I understand what I have
I hope good things come

Meet Nkechi

H
i, my name is Nkechi and I’m in the 4th grade. In the future I hope
to go to college and be a vet. My favorite activities are ice skating
and dancing. I love to draw. I have been living with HIV since I
was born. I got if from my mother breast-feeding me. Having HIV is not
fun because if I don’t take my medicine, I could die. Everyday I take my
meds in the morning and at night. When I was a baby my dad died from
HIV. It’s sad for me because I never really knew my dad. When he died
my mom was very sad because she loved him very much. Don’t ever be
afraid of people with HIV because they are normal people like everyone
else. If you’re friends with someone that has HIV, you do not have to be
afraid of them.

“I Am” — By Nkechi, Age 9

I am nice and smart

I wonder how many animals there are
I hear red robins singing songs
I see deer cross streets
I want my brother to visit some day

I pretend sometimes that I’m a fairy

I feel excited when I go on trips
I touch frozen snow on the ground
I worry about my dogs sometimes
I cry when I’m sad

I understand math in school

I say it’s a nice day
I dream about living in Japan
I try to do my best in school
I hope someday I’ll get another dog

Treatment Educat10n Network—TEN 11

 Women & Families
“UB2” SIN Happy Hour
C
olorado AIDS Project (CAP) offers a variety of
services to support women and their families.
CAP welcomes any questions regarding
Second Friday our services, and we look forward to hearing from
of every month you. If you would like to become a CAP client, or
just have questions, please contact our Admissions
6-7 pm Coordinator Angela Keady at 303-837-0166, ext.
482.

Meet upstairs at CAP offers case management services for women

and men, as well as their families. The most important
The Skylark Lounge goals of case management are to support you in your
healthcare and address barriers to healthcare in a
140 S Broadway safe and welcoming environment. Case managers
can also help connect you to services for housing,
SE corner of S Broadway & Maple Ave mental health, substance abuse, public benefits,
employment, and more.

Would you like to contribute

to this newsletter?
The TEN Newsletter is a quarterly publication and
welcomes submissions from anyone on anything
HIV-related. Deadlines are usually a few weeks prior to A fully stocked Food Bank supplements your
publication. We appreciate articles that have a maximum resources and provides nutritious options that meet
length of 500-600 words. All submission are subject to the unique needs of people living with HIV. You may
editing for length and clarity. Send articles or ideas to: qualify if your income is at or below 125% of the
[email protected] federal poverty level. CAP also provides bus tokens,
Put “Newsletter” in subject line. as well as discounted bus passes to eligible clients.
These transportation services further help you to
attend medical appointments, as well as potential
job interviews.

CAP has two permanent housing programs in the

COMMUNITY community, both of which are options for women. The
CAP housing programs accept referrals for women
EDUCAT10NAL who are currently experiencing homelessness. If
FORUMS you are a mother with children, we may also be
able to help you locate housing opportunities in the
"By the Community For the Community"
community.

Second Tuesday of the Month (usually) Our Employment Center offers various workshops
* free dinner 6pm * presentation 6:30pm * to help prepare job seekers for the challenges of
employment including: resume writing; interviewing
Community Room at Our Saviors skills, internet based employment searches,
budgeting/financial literacy and basic computer
9th & Emerson (enter on the side from Emerson) skills.
More info: www.OnTheTen.org or 303.377.3127
CAP’s counseling services provide mental health
Upcoming Forums: and substance abuse counseling to all individuals
Tuesday January 11: infected and affected by HIV. Services are available
Special Informational Session on Changes to ADAP to individuals and in group settings. CAP has an
Tuesday February 15: ongoing weekly therapy group that is open to both
"Bone Health & HIV" (Dr. Ben Young) men and women. If you want to know more about
Tuesday March 8: the counseling services we offer, please contact
Annual Tim Gill forum at Hamburger Mary;s Mary Ann at 303.837.0166, ext. 490.
(topic & speaker tbd)

12 Treatment Educat10n Network—TEN

 TEN from TEN
1 Pope Benedict has said that for some people, such as
male prostitutes and others at risk, using condoms
could be okay if used to prevent the spread of HIV
the assays have been conducted in test tubes, and now
they need to be done with whole infected cells.

7
infection (even if it prevents pregnancy). The position was an Astronomers recently discovered there are 3 times
acknowledgement that the church's anti-birth-control stance more galaxies in the universe. New technological
against condoms doesn't justify putting lives at risk. analysis of light signatures pushes the total number

2
of stars to 300 sextillion, which is 100 billion squared,
Prince William calls Cate Middleton "Babykins". multiplied by 30.
Cate Middleton calls Prince William "Big Willie". ...hmmmm... sextillion ... that's really hot!
...hmmmm... What are you saying Cate? ...

3 Faced with performance problems, menopause, &

mismatch of expectations, baby boomers are the
unhappiest of all when it comes to making love.
The generation that promoted free love has grown old and
8 "Whoonga" is a concoction made by drug dealers
in South Africa mixing HIV medicine with
marijuana. There is no evidence that this does
anything to enhance the marijuana high. Authorities are
extremely concerned that this will deprive some
cranky about sex with only 7% of people 45-65 extremely individuals of receiving their lifesaving medications in the
satisfied with their sex lives in a recent poll. Even seniors worst-affected nation.
are more satisfied. SA is embarking on a massive distribution of HIV drugs.

4 New recommendations say that much of the Speaking of marijuana ... a USC study has shown that
Vitamin D craze is unwarranted and most people marijuana can suppress the body's immune system, which
should get 600 IUs daily. However, many explains why pot-smokers are more susceptible than
specialists believe persons with HIV should get at least non-smokers to certain cancers and infections This is due
1000 IUs and up to 4000 IUs daily. to chemicals in the drug that fire up the production of
immune cells called myeloid-derived suppressor cells.

5 When asked her opinion on the recent crisis with

North & South Korea, Sarah Palin said that
"the US should stand with our North Korean allies".
...hmmmm... no comment ...
9 The FDA has approved a new HIV test that
generates results in about 60 seconds, rather than
the 20-30 minutes it takes with the current "rapid"
tests. The new test is currently approved for use in 57
Speaking of Sarah, Barbara Bush recently remarked "I sat
countries. It will be particularly beneficial in complex
next to her once, thought she was beautiful ... and I think
environments with challenges such as emergency rooms,
she's very happy in Alaska ... and I hope she'll stay there".
correctional facilities, and dental & physicians' offices.

6
...hmmmm... let's get everyone tested ...
Results from a "PrEP"(pre-exposure prophylaxis)

10
clinical trial suggest that a once-daily dose of Hours before the service, huddling &
Truvada in HIV-negative individuals reduces the shivering in the cold and dark, about 3000
chance of getting infected by 40 percent (statistically people showed up to line the streets within a
significant). The protective benefit could be as high as half-mile of a small-town church in Missouri. This
95% if doses aren't missed, according to the study prevented Fred Phelps and his Westboro Baptist Church
conducted with 2,500 men on four continents. group from shouting and disturbing the funeral of a soldier
The results bring up a number of issues including the who was killed in Afghanistan. Learning by word of mouth
expense & how this would be paid and/or who would pay; and Facebook, people drove from 3 or 4 counties away,
what to tell doctors & patients who want to start this now; buses brought school kids and senior citizens, people took
the ethics of providing drugs for prevention vs treatment; off work, and farmers parked trucks nearby. At a distance,
"use-swapping"; and a number of other concerns. the protesters got out waving their signs and ranting their
Speaking of HIV drugs, researchers have discovered that slogans that soldiers' deaths were God's punishment for
raltegravir (Isentress) could be effective against the herpes America's tolerance of homosexuals. The massive crowd
virus (human cytomegalovirus) by cancelling the function drowned them out singing "God Bless America" and chants
of an essential protein for the replication of herpes. So far of "USA! USA!" and "Go home! Go home!"
Treatment Educat10n Network—TEN 13
 Recommended Changes to Disability Qualification for PWHAs
Edited from a blog article by Tim Horn, Editor-in-Chief of AIDSmeds (www.AIDSmeds.com)

N
ot too long ago, HIV was considered to be a distressingly predictable disease. In almost all people infected with the
virus, it was only a matter of time before the CD4 cell count dropped to a dangerously low level and opportunistic
infections and cancers reared their life-threatening and life-ending head. While the use of drugs like AZT in the
80s & early 90s could slow this process, rarely was antiretroviral treatment (ARV) able to restore health for any significant
length of time. Today’s powerful ARV has virtually rewritten HIV’s insidious script. Even those who don’t find out they’re
positive for a long time can experience a return to immunologic health. In turn, AIDS as we’ve long known it is no longer
an inevitable and progressive stage of HIV disease, but a seemingly avoidable and reversible condition.

PWHAs and their health care providers have known this, but so have administrators who oversee public programs intended to
provide safety nets to those who become disabled and can no longer support themselves due to disease. The Social Security
Administration (SSA) has been providing disability benefits (SSDI & SSI) to people living with HIV for decades, using early-
year knowledge of the disease to determine qualification. But as times have changed, SSA is eager to overhaul its disability
benefits criteria to reflect today’s reality. In 2009, SSA asked the National Academy of Science’s Institute of Medicine (IOM)
to establish the Committee on Social Security HIV Disability Criteria—made up of experts in the field of HIV care, including
community advocates—to recommend updates to the disability criteria for PWHAs. IOM’s report was released in draft form
on September 13 and is on its way to SSA for review. Not everyone is thrilled with its recommendations. It is now clear that
the recommendations are only intended for new disability applicants. The agency made it clear that it was not interested
in revoking disability status of those living with HIV; a move which could have potentially thrown thousands of lives
into an economic tailspin. Yet there are concerns about how this will affect new applicants who might come to depend on
disability status, not only for income, but also health care and other supportive services.

Currently, individuals must meet SSA’s definition of disability defined as “an inability to engage in any ‘substantial gainful
activity” by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death
or which has lasted or can be expected to last for a continuous period of not less than 12 months.”

As part of the process, SSA adopted a list (The Listing) of serious HIV medical conditions which are applied at the third step
of a five-step review process. It currently requires a diagnosis of an AIDS-related opportunistic infection or cancer. The list
of allowable medical conditions for HIV-positive adults is, indeed, long and includes a variety of once-common bacterial,
fungal, protozoan and viral infections; sepsis; meningitis; pneumonia; septic arthritis; endocarditis; and sinusitis. A frequent
misperception is that a CD4 below 200 automatically qualifies for disability. This was true in earlier years, but is no longer the
case.

What’s more, SSDI and SSI determinations are a matter of administrative law -as much as they are about medical opinion.
Even if an impairment doesn’t clearly meet a disability criterion, they may still come to agree that it restricts employment. A
complex process, to be sure. Still, things have changed considerably since the 1993 Listing was enacted.

According to the IOM report:

New drugs and the concept of drug combinations evolved dramatically after 1996. HIV infection is now considered a
chronic condition which, in optimal settings, allows high levels of functioning and prolonged survival. Combinations of
antiretroviral drugs suppress HIV replication, enabling a recovery of immune function as reflected in circulating CD4+
[cells] normal or near-normal levels in most persons. Success in treatment, however, is far from universal. Many HIV-
infected persons harbor virus already resistant to one or more antiretroviral drugs, limiting CD4 recovery. Others are
diagnosed at very advanced disease stages or at an older age, both predictors of poor response to treatment. Many
others find the lifelong requirement for consistently excellent medication adherence to be impossible or are suffering
from the side effects of current or previous antiretroviral therapy. Today, although many of the opportunistic diseases
once common are now uncommon, they are still seen. Many patients respond well to treatment, but others, even in the
era of potent HIV medications, fail to achieve control of HIV replication or are diagnosed in extremely late disease stages
and have rapid progression or disabling complications. For all these reasons, the HIV Infection Listings are in urgent need
of reconsideration and revision.

IOM’s recommendations involve doing away with the current HIV Listing and replacing it with groupings of health
complications associated with disability in people living with HIV. A diagnosis of one disabling condition in one group
will be needed to qualify, according to the IOM committee report. The report brings CD4 count back into the picture,
specifically at or below 50. However, the report recommends this allowance be reviewed about every three years,
to assess the magnitude and stability of the individual’s response to antiretroviral treatment. By contrast, the committee
found several HIV-induced diseases that warrant permanent disability. These diseases are severely disabling, have a high
short-term mortality risk, and respond minimally to conventional treatment.
(continued on page 15)

14 Treatment Educat10n Network—TEN

 Recommended Changes to VIP for HIV
Disability Qualification for (continued from page 10)
realized that while this was way more intimate than my previous
PWHAs meeting with them, I still did not have much time. I watched as
(continued from page 14) Amanda laid her head on my Brian’s chest.
Diseases to be considered imminently fatal include: “You are so tired,” he consoled her. I knew we needed to get
· HIV-associated dementia out of their way and not abuse what they had just given us. As
· Multicentric Castleman’s disease soon as I locked eyes with Amanda for a second time, I chimed
· Pulmonary Kaposi’s sarcoma in with my final words.
· Primary central nervous system lymphomas
· Primary effusion lymphoma “There are a thousand things I want to say to you right now,” I
started off. “But if I could only pick one thing, it would be to tell
· Progressive multifocal leukoencephalopathy (PML) you that I recently co-started an organization to connect young
people living with HIV together back in Denver. We called the
Disability allowance is also recommended for other group ‘Gravity’ after your song.”
conditions with HIV infection or side effects of treatment.
To qualify, however, applicants will need to prove that these Her jaw dropped as she did a double take to what I just told her.
conditions limit their ability to function in the workplace. “Wow. That is amazing,” Amanda said. “And that song… it is
filled with so many emotions on your body just not working the
Because recovery from these is possible with ARV, they right way or working against itself and people not understanding
should also be reviewed every 3 years. This list would what it feels like.”
include, but would not be limited to:
I jumped at her words. “That is exactly what it feels like to have
· Diarrhea HIV.” Tears began to fill my eyes. “And so much of your music
· Distal sensory polyneuropathy has helped get through this experience. I know your songs are
· HIV-associated neurocognitive disorders not about HIV but your lyrics are so relatable to the struggles in
· HIV-associated wasting syndrome; which one endures with it.”
· Kaposi’s sarcoma Brian Viglione overheard our conversation and made his way
· Lipoatrophy or lipohypertrophy back over to us. “This is you?” he asked. “You are the guy from
· Osteoporosis Denver?” “Yes,” is the only thing I could say. Apparently their
assistant had told them my story.
Many people living with HIV experience a higher rate or
“It is such an honor to meet you” he said, grabbing my hand
earlier onset of diseases that are grounds for disability and shaking it. By this time, Amanda herself began to shed
claims using various non-HIV listings. In turn, the report tears. As soon as Brian finished shaking my hand, Amanda
stresses the importance of cross-referencing other medical wrapped herself around me and gave me a hug. It was not a
not specific to PWHAs when reviewing applications. It simple hug. It was intimate moment I craved. She held me and
suggests a review of procedures to reduce the risk of HIV+ I held her back. I had just told her my darkest story. I officially
people dealing with non-HIV-related complications from admitted that I was living with one of the scariest communicable
falling through the cracks. Examples include: diseases of all time. And she did not recoil from me. Amanda
Palmer did not reject me. Instead, she embraced me; physically
· Cardiovascular disease and emotionally.
· Chronic kidney disease, including HIV-associated “Let’s take another picture,” she suggested. I was more than
nephropathy willing. We both wiped our eyes trying to look like we hadn’t
· Diabetes shed any tears at all. She draped her hands around me and held
· Hepatitis me tight as we smiled together for the camera. We separated to
· Malignancies, not otherwise specified in the report bid farewell to one another. “Thank you so much,” she said,
again looking straight into my eyes.
Because qualifying for SSDI or SSI is required for PWHAs I thanked her back as I beamed with smiles walking out of the
to access Medicare or Medicaid, some community room. We were the first of the VIPs to leave. But I also knew we
advocates are concerned that a huge swath of future HIV+ were the best she would meet all night and perhaps for much of
people will face tremendous hurdles getting the care they the tour. As I had hoped, The Dresden Dolls probably wouldn’t
need, if SSA overhauls its HIV Infection Listing based on ever forget me.
the IOM recommendations. Presently, Medicaid covers
Afterwards I was a mix of emotions. I had just told my saddest
approximately one-third of PWAs, while Medicare covers story in one of my most amazing moments. HIV was the lowest
another third of those infected with the virus. low of my life. And it now led to one of the highest highs of my
life.
The SSA review process is just beginning and it is unlikely
that the agency will take action until 2012. There will be a Without HIV, I would not have been a VIP.
public comment period and plenty of discussion between I would not have been able to make such an
activists and agency officials in the meantime. The future impression with one of my favorite bands.
story of SSDI and SSI for people living with HIV has yet to How was I supposed to feel? I was not sure.
However one thing was for certain: I would
be written. soon be crawling back into bed with my
headphones on. But this time, I would be
smiling instead of crying.
Treatment Educat10n Network—TEN 15
visit www.gravitydenver.com