We Survived the Plague, but the Face of AIDS has Changed

January 31, 2013

yvetteToday’s guest post was written by Yvette Bello, Executive Director of Latino Community Services (LCS), and Connecticut Health Foundation Leadership Fellow, Class of 2009.

Background: Last night, a small group of Health Leadership Fellows attended a screening of How to Survive a Plague at the Bijou Theater in Bridgeport, CT. The film, which has been nominated for an Academy Award for Best Documentary, is “the story of two coalitions—ACT UP (AIDS Coalition to Unleash Power) and TAG (Treatment Action Group)—whose activism and innovation turned AIDS from a death sentence into a manageable condition.” In this post, Yvette reflects on the film.

I work in this field and I am always surprised that beyond the science and the policy aspect of HIV, what both hurts and recharges me at the same time is the blatant loss of life.  It hurt me to see the progression of HIV in the advocates and it horrified me that the sight of HIV beaten bodies was and is familiar to me. I noticed myself getting a little angry that I have been too many funerals since my time at LCS despite having an HIV system of care.

I couldn’t help but think about the advocate pioneers and think to myself, I am thankful that the founders of our HIV system of care and treatment were educated white, gay, men of means that knew, believed and  used their white privilege to fight back.  The face of HIV has changed and my average client is not  educated, not white, not gay, not a man, not of means, and as a person of color, this reality is horrifying.

This shift in average client runs hand in hand with the gradual retraction of services available to consumers today.  The government funded system I inherited 7 years ago allowed providers like me to do services like respite care, home care, buddy/companionship, and food assistance. Since 2005 our same funding system has retracted to only provide assistance to people below 300% of the Federal poverty level assistance to stabilize their health.  This means that we no longer do any of the services I mentioned but now only help clients stay connected to medical care and on medication.  While many may applaud this “right sizing” of government assistance, many clients over the years have  fought us and to this day are confused as to why they can’t get what they “need.”

As an HIV/AIDS organization, we have experienced retraction from the system that the film described.  Don’t get me wrong the government still makes it a point to have mandated consumer involvement in the prioritizing of our funding from a list of categories they have already prioritized. Consumers are recruited to be on these councils and are not prepared enough to understand the impact of their decisions. More often then not consumers advocate for basic needs that while are real and needed, they are often not the point of the meetings.  Consumers often use the councils floor to voice their dissatisfaction with their own personal situations and rarely do we get to decisions that could improve the system.

It hit me last night that there is a disconnect between what my average client with HIV needs and what our government now sees is an HIV need.  My epiphany is that current HIV system considers medical care and HIV medications as its priority and the other needs that my average client  living with HIV have are issues of poverty.  Needs that could have never and cannot ever be met with just the HIV system of care.  Our clients are literally fighting a completely different fight than the one we watched unfold on film last night.

My question is, how do we re-align our consumers with this reality in a way that they can advocate as people of color in a system still built for a white America?

One answer: apply to our Health Leadership Fellows Program so that we can answer this question together.

 

 

7 Responses to We Survived the Plague, but the Face of AIDS has Changed

  1. Christi Holmes says:

    Thank you for your thoughtful comments and reflective questions, Yvette. The same questions were running through my mind as the documentary unfolded. Additionally, using the film’s strategies for collective leadership and mobilization in our current healthcare system may hold some value, but need to be adapted to reflect the changing social and behavioral determinants. The CT Health’s Fellows network may provide the space and leadership to begin the conversation about adaptive strategies. I challenge us all to come together to ACT UP. Let’s pick a date and begin.

  2. Jenn Whinnem says:

    Hi Yvette, thanks so much for coming to the screening last night. Your perspective here, as someone who works in the HIV/AIDS field, reminds me that the story in this film is history, and now we have a completely different war to fight. As you’re thinking about this, what remedies come to mind? What solutions are you thinking about? Do we broaden the system of care? I know we’ve figured this out for other chronic (fatal) diseases, surely we can do this for HIV/AIDS.

  3. I wish I’d been able to join you all for this screening. Thank you for sharing with us, Yvette. I worked for a local AIDS Service Organization a few years back and keep in touch with some of the staff and members; I understand your frustration with the way the system of care continues to shift.

    One of my greatest fears is that the depleting of HIV prevention funding/programs will continue, resulting in dramatic increases in new infections (particularly among young people). Your comment, “It hit me last night that there is a disconnect between what my average client with HIV needs and what our government now sees is an HIV need” reminded me of something I asked a colleague a while back. I wondered who, at the top of the government food chain, has been out of the field so long that they’ve become disconnected with HIV up-close & personal.

    My prayer is that it won’t take another dramatic increase in new infections to get people involved. What will it take?

    How, in an age where HIV/AIDS is no longer the “in” disease, do we remind people of the importance of (1) prevention/education, (2) compassion for PLWHA, (3) the need for a movement that is strong and committed to advocating for funding is distributed in a way that fully and equitably addresses social determinants of HIV care?

    We’ve many tools at our disposal—who’s willing to get their hands dirty? I know I am.

  4. Yvette Bello says:

    Thank you all for your comments. They are supportive to my personal observations.

    In response to all of your comments, I think that the we are all pointing to a clear gap in communication and educating the general public and really challenge misperceptions about our HIV community. I know when I have a chance to talk to people who are not in my world, they are often unaware that there are social determinants that make an infectious disease like HIV an inevitable outcome in urban communities. I teach that there is research out there that has proven that people who live in urban settings are not sicker because they are more promiscuous than those in the suburbs, in fact they are not. What does happen more in the urban communities is the lack of access or opportunity to do anything outside of the densely populated communities. IN other words, unlike suburban communities that tend to have wealth and access to cars to be mobile, our urban communities often do not. Urbanites tend to be born in, raised, go to school in, worship, work, have relationships, have children in the very same community without ever having to leave that community. If ANY infectious disease is introduced in a dense population like that, it is mere probability and not promiscuity that drives infectious rates. People are people and do the very same things they have been doing since the beginning of our human race, regardless of race in all communities. The difference is that communities of color are rather looked at as spawns of illicit behavior and somehow we should be punished for being sick. One of the worst questions I get when I speak about the people i serve is to hear “how did he get HIV?” My response is does it matter? Does an Injection drug user need any less than the hereto-sexual wife who was played by her husband? Is there really any place for blame in healthcare?

    For me the next step with everyone I meet and whom I truly talk to about my work and the lives I am willing to fight for. I created a social media campaign a few years ago that simply asks, “How do you fight?” I take pictures of people with boxing gloves and promote it via Facebook (http://www.facebook.com/media/set/?set=a.10150152568481511.282568.40458436510&type=3) I ask them to get invovled and at minimum, take a picture. I ask them to just think about that question. I believe we as a people could do so much more than merely judge those that have HIV. We can talk to our kids, our neighbors, our faith leaders about the risk factors for HIV. We could donate or help a nonprofit out. Hell you can even quit your job, and join our front line, but don’t stop fighting. I think we need to mobilize to humanize ourselves again. I aim to keep sharing why i say I love my community. I share the facts behind who are the lives that are impacted by HIV. They are people. People I respect for waking up everyday despite having nothing to wake up for except faith that something has got to give. I love having to live up to my own expectation that my organization, our staff,will be that something for them.

    I love connecting with them as people. No one deserves to be sick.

  5. Francisco A. Lopez says:

    Thanks for the post Yvette.
    As I said before, the conversation about how to address the new “face” of the HIV patient is extremely important. However, as I re-read your blog, I am struck by how important it was for the AIDS community at that time to be as you said “educated white, gay, men of means that knew, believed and used their white privilege to fight back.” As a person of color, I am happy to say that white privilege, or any other kind of privilege, can and should be used for the building up of people!
    Talk with you soon!

  6. Yvette Bello says:

    Francisco, I completely agree. I think all of us can look back at our life’s experiences and see that each of our own personal accomplishments and heck even our own failures have led us to this very moment of our lives. If we are honest with ourselves we can pin point behaviors or moments that we too put our selves at risk for a dozen different conditions and diseases. Privileges like education, safety, and income should be used to enable others to have the same. I remember once that exact thought entered my mind. I was washing my car once and I was thinking about how to define success for someone living with HIV. I remember thinking to myself who am I to determine their interpretation of success. Sure, medically if we suppress a viral load and increase their CD4, then that is success but would my client think so. Is that what will motivate them to stay on meds? Are they fighting to stay alive or is staying alive the start point for them.

    I remember thinking to myself, success should be determined by them and my role as a provider was to create/sustain the environment in which that success can happen. It became clear that I would need to use all of my personal and professional accomplishments and life experiences to create that environment. I would have to use my civility instilled by immigrant parents, I would have to use my bi-lingual ability to connect, I would have to use my knowledge of State bureaucratic system,I would have to be as resourceful as I was in the Army Guard at a nonprofit, I would have to educated myself to speak on behalf of those that haven’t been able to get educated, and I would have to remain human ad mist the in-humanity of HIV. So, you are right, if privilege is what is at one’s disposal,lets use it.

  7. Heang Tan says:

    Yvette, thanks for your insightful blog post. I wish I was able to attend this film screening. Do we have other opportunities to watch this film?

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