Why We Care
An EAF client told his case manager recently that he wanted to switch his medical provider. When asked why he said that upon returning to the provider's office having forgotten some papers, he found the receptionist wiping down all the door handles he had just touched and that he didn't feel comfortable going back.
AIDS still kills. AIDS still hurts. AIDS still matters. Because a 20 year old shouldn't lose 20 years of his life for being young and foolish. Because no one should get a fatal disease for following his or her heart and trusting too soon, or mistakenly. Because addiction, or low self esteem, or mental illness shouldn't be so irrevocably consequential.
Evergreen AIDS Foundation is one of the oldest AIDS service organizations in the country – quite a remarkable story of accomplishment for the town that Bellingham was in 1985. But EAF has always been an agency with ambition and deeds larger than its size. It all started in 1985 with some friends sitting in a bar talking about what they could do to help a close friend with AIDS die (and that was the inexorable, numbing result in those early years). And help they did – with food, with chores, with money (AIDS was an impoverishing disease) and, most importantly, with care and support. The friend's name was Barney Wood, and today EAF's Barney Wood Memorial Fund provides emergency financial assistance to scores of people with HIV disease every year. The work depended on their humanity and commitment. It was compelled by the ravages of AIDS in Bellingham (like everywhere else, not spared) and inspired by the courage of, and their love for, those who had the disease.
In the beginning, there was no agency. There was only: "We must" and "I will." One, became five, became dozens, and with them organization and a name: Evergreen AIDS Support Services. The work was basic, but essential: information and referrals, emergency financial assistance and volunteer support. An office, and volunteer staff, mostly, to answer phones (someone was available 24 hours a day, and many calls came in the early hours of the morning, when courage surpassed fear, or the house was asleep), collect food and coordinate services. The effort was extraordinary in this rural northwest Washington city of fewer than 50,000 people.
Four people attended the first AIDS support group on July 28, 1987 (attendance quickly grew to 25). Evergreen AIDS Support Services incorporated in 1988 and answered 195 calls and provided 700 hours of service in that first fully measured year. The first Northwest Artists United Against AIDS auction was in 1989 (running continuously for 18 years). Community support was strong (the local gay bar, the Toyon, and the Imperial Sovereign Court of the Evergreen Empire held frequent fundraisers, raising both money and awareness). The Whatcom County Health Department provided financial and administrative support (as well as case management services to persons with HIV disease). In 1994, EASS received its first Ryan White CARE Act grant ($17,942), which grew to $113,260 in 1995, supporting three full-time staff, including an executive director, a volunteer coordinator and the Friend-To-Friend Coordinator (paid for by a regional AIDS Service Network grant). When EASS began providing case management services in 1996 (a collaborative hand-off from the Whatcom County Health Department), its client load had grown from 30 (in 1993) to 129!
In the first 10 years of EAF's existence, the principal focus was on helping clients die with dignity and ease (in a home, with food and heat, employed until they could no longer work, and surrounded by loved ones). In the early years, these were no small achievements, as AIDS, and the rampant discrimination that followed, struck quickly and savagely. "Get out of our house." "You're fired." "I lost my insurance." "I have no money for food." "I am too weak to clean myself." "We never want to see you again." These were dark, difficult days. But as we understood the disease better, we feared less. EASS, and the clients it served, both the prod and the object of change.
In the next ten years, Evergreen AIDS Foundation evolved to become the largest community-based AIDS service organization in the region, combining with Skagit AIDS Volunteers and providing direct services in Skagit County, including case management services (another collaborative hand-off from the Skagit County Health Department). And as the disease changed, so did the agency, which grew to eight full-time and part-time staff and scores of volunteers, serving 215 clients annually in over 8,000 service encounters by 2005. New drugs, thankfully, improved, and prolonged, the lives of many (but not all, and not without physical toll). While the majority of our clients were (and remain) gay men, that proportion changed as women, persons of color and youth were disproportionately affected: AIDS no longer the gay disease it never was. Many clients also confront significant issues of poverty, mental health, substance abuse, stigma and isolation. EAF strove to meet this kaleidoscope of need across a range of geography that traverses thousands of square miles, both urban and rural. Building on its essential core of case management and client advocacy, the agency also provided community outreach, education, prevention, counseling and testing, mental health counseling, clinical support groups, emergency financial assistance, volunteer services and critical psychosocial support (shame and fear, guilt and uncertainty, all leading to corrosive self-isolation or, worse, self-negation) for persons living with HIV/AIDS and their families.
In 2009, EAF began providing case management services in Island County. In 2010, EAF began providing care and prevention services in Snohomish County. This expansion more than doubled the number of clients served, staff and budget. Also in 2010, EAF began providing case management services in San Juan County. In 2012, the Washington State Department of Health asked EAF to provide case management services in Cowlitz County (which was losing its long time provider). In response, EAF opened a third office in Longview and developed an innovative virtual case management model of service delivery to provide regular and robust case management services to persons with HIV disease in remote areas or parts of the state with low disease burden. Also in 2012 EAF became the Project Sponsor for the federal Housing Opportunities for Persons With AIDS (HOPWA) program in seven (7) western Washington counties – Jefferson, Clallam, Mason, Grays Harbor, Pacific, Wahkiakum and Cowlitz. Yet again EAF expanded its services (both qualitatively and geographically) to assure the continuation of services to counties facing the loss of such services.
Today, EAF has eighteen (18) staff serving approximately 650 clients annually in over 22,000 service encounters! Together with our many volunteers, we serve clients in Cowlitz, Island, Pacific, San Juan, Skagit, Snohomish, Wahkiakum and Whatcom Counties out of three offices (Bellingham, Everett and Longview).
With today's medication, it should now be possible for nearly everyone to have a suppressed viral load. That's critical both to care and prevention. And so, EAF's mission in this next 10 years is shifting again, to help clients build a future, to expect more, to be ambitious. Living forward. For us here, that means attending to the basics still – helping clients re-form their lives (access care and support services, return to work, improve financial stability, fall in love (and have sex) again). It means significantly enhanced peer support services – clients empowering clients. It means social enterprise and supportive employment (HIV/AIDS still an impoverishing disease). It means advocacy and leadership as we move forward with health care reform and increased public awareness. It means richer and fuller case management for the most debilitated clients, no matter where they live. Our work is not done. But it is not without hope.
It is also not without CELEBRATION. We could not have imagined 25 years ago that some of our clients then would still be alive today, often barely past friends who didn't make it to the next, life-saving advance. Of course we will never forget our friends and family who did not, but we feel like dancing every time we see our old friends who did make it. We also celebrate the great, sometimes courageous, work of this agency (volunteers and staff). When it wasn't easy, or popular, and the toll was great, Evergreen AIDS Foundation was a healing and informing presence. It is the history of AIDS in this unique community and honors the persons who have died of AIDS and the persons who live with HIV/AIDS. They are the essential part of what we all do, what this agency is, and whose courage, grace, fortitude, humor, dignity humbles and enables us.
Mission & Values
The mission of Evergreen AIDS Foundation is to foster a healthy, hopeful and empowering community response to HIV/AIDS.
Central to this mission are the guiding principles of:
- Integrity, taking responsibility for competent judgments and appropriate decisions in the ethical pursuit of mission
- Leadership, sustaining the courage to challenge the status quo, to question 'why' or 'why not,' and to innovate in response to shifting community needs and priorities
- Dignity, respecting the worth of all participants, drawing upon individual and community strengths
- Partnership, building upon mutual empowerment, advocacy and the nurturing of constructive communities
- Humility, recognizing our essential equality both in service and receipt of service
- Hope, inspiring positive transformation of self and others
Some fifteen years into the era of protease inhibitors and drug cocktails, treatment has prolonged, and improved, the lives of most (but not all) persons with HIV disease: a suppressed viral load not only improves morbidity and mortality, it significantly reduces the likelihood of HIV transmission. But we are reminded daily still of the toll of disease and treatment – the complexity (and irony) of HIV disease continues to confound science, wreak havoc in our clients' lives and require new responses of EAF. This "chronic, manageable disease" is bringing with it accelerated aging, cognitive impairment, bone loss, organ failure, arthritis, insulin resistance, cholesterol imbalances and significantly elevated rates of non-HIV-related cancers that, themselves, are crippling or lethal. And also a new marker of AIDS: lypodystrophy – the abnormal fat distribution that hollows out the face, distends the stomach and humps the back – has replaced the lesions we all remember so vividly.
AIDS still kills. One way or another. Whether this is a result of the drugs or the disease itself, or some combination, is still an open question and certainly varies from patient to patient and condition to condition. Either way, current life-expectancy charts show that people on HIV medications could live twenty fewer years on average than the general population. And there is no cure or vaccine.
Stigma & Discrimination
According to the Food and Drug Administration, many of us have bad blood. We and millions of others just like us, or not very different. We are tainted. Essentially so. And not eligible to donate blood. Who are we? Why is this so? Why do we bear this mark? Maybe it is this: you are a male who has had sex with another male since 1977, even once. Or this: you have ever used a needle, even once, to take drugs or steroids that were not prescribed by a physician. Or this, too: you have taken drugs or money in exchange for sex since 1977.
This policy offends deeply, morally. It is so full of (blunt, ignorant) judgment and censorship. About you. About us. Without redemption.
For too many, AIDS remains a secret disease – voiceless, shameful, exclusionary. What does that mean? It can deprive someone of care and comfort at times of great need. It also deprives us of the opportunity to enlarge our capacity as family members, friends, human beings (to care, to understand, to help). It stunts us. And marks us as different.
HIV stigma is widespread in the United States and is perhaps the single largest barrier to effective responses to HIV disease at individual, community and societal levels. Research has consistently shown that HIV stigma negatively affects HIV test-seeking behavior, willingness to disclose HIV status, health-seeking behavior and the quality of care and support received, particularly in minority, native and rural communities. Individuals are less likely to adopt preventive behaviors, seek knowledge of their status or enter care. Full stop. Moreover, the negative consequence of HIV stigma is compounded by related stigma, such as sex and sexual identity, race, gender and economic status.
In 2013, Evergreen AIDS Foundation will again present Living Out Loud, an LGBTQ visibility project. The mission of Living Out Loud is to "recognize the other in us all, and the power of outness." This seems especially relevant to the work of EAF to reduce the stigma and negative stereotyping related to HIV disease and sexual orientation and behavior. Unfortunately, in many parts of the world (including our own), stigma and discrimination linger. But we are not without the capacity to respond. We can resist isolation, fight stigma, lift our esteem. That is the power of outness – your outness. It brings knowledge and, usually more slowly, understanding. It makes the strange familiar. It lessens fear. Hate is actually a difficult emotion. It is hard to hate people we know or things we understand. That is why the language of hate is so often the reductive language of "them" – the abstract group, idea, or behavior easy to caricature. "Getting to know you, getting to know all about you," it turns out, makes the black and white renderings of hate (stigma, discrimination) harder to sustain. That easily dismissed or despised "other" we find to be our brother, our daughter, our friend, our neighbor. People like us. That matters A LOT.
Being the other, and being out, is not always easy and seldom without consequence. It can require fortitude, sacrifice, suffering and mindfulness. As we know, the cost of outness (sitting at a lunch counter, holding a boyfriend's hand, striking for better work conditions, burning a bra) can be extreme. Many of our rights and decencies are built on the courage, and graves, of these brave pioneers of "we." Every time we declare ourselves, defiantly, quietly, we enlarge the universe of understanding (and our own authenticity). "I am gay." "I am HIV-positive." "I am entitled to be here." "I am afraid." "I am equal." These small proclamations of self, ultimately, are stronger than oppression (guns) or hate (fear). This display of courage and power encourages us all to live a more declarative life. Silence out of fear is a bubble. Keep a pin in your pocket.
So, first, thanks for all your wonderful otherness and outness and, second, for every little boy or girl, once, now or to be, who was (or will be) different, or ashamed, or afraid, or furtive, or constrained, EAF offers (by your example) the hope and wish of an OUT LOUD LIFE!
And aside from trying to lead such a visibly truthful life, there is something more we can do: be a soft spot for someone to land, about something.
Change & Opportunity
Change is in the air. There are times in the year, or the day, when change is palpable – a new season; an approaching storm; a spreading wildfire; a nearing sea. It is in the air (smell, sound, sight, feel). Sometimes the transition is subtle, sometimes abrupt. And try as we might to have it otherwise, change is going to come. So it is for Evergreen AIDS Foundation.
In 2012, EAF opened a third office in Longview to assure continued access to case management services to persons with HIV disease in Cowlitz County. And in doing so we developed a service model of virtual case management that will enable EAF to provide similar services to other remote areas with lower disease burden.
Other significant, likely altering changes loom. First, the federal Ryan White program must be reauthorized in 2013. Even with full implementation of the Patient Protection and Affordable Care Act (ACA), the Ryan White program will still be necessary to fill gaps left by the ACA (dental care, for example). It will also be important to retain case management services to ensure that persons are connected with the new health care delivery systems without disruptions in care or treatment.
Second, now that the Supreme Court of the United States has determined that the ACA is a constitutional exercise of congressional power, EAF and our clients must prepare for its implementation. The ACA provides some important benefits for persons with HIV disease. Among these is expanded Medicaid eligibility (based on income only, removing the current requirement that one be also medically disabled to qualify). In addition, others will be able to purchase private insurance through a health benefit exchange (regardless of preexisting condition, and with a subsidy for those for whom insurance remains unaffordable). The ACA also provides for community rating, disallows annual and lifetime caps on coverage and forbids rescission.
EAF, like everyone, is working to put the agency in front of the right door so that when it opens we have a path forward, rather than a brick wall.
And there is the opportunity. For our clients, it suggests the possibility of better access to health care and a fuller life, without the worry how they will pay for their care and treatment (if they lose a job, if they want to go back to work). For the agency, we will expand both the reach of our HIV-related care and support services (to new clients, through outreach and new service areas) and its scope (as we help our clients prepare to enlarge the reach of their own lives – through better health and increased financial stability) and the work that we do (to extend the benefit of EAF's expertise for care coordination and family and social support to other chronic conditions and new provider networks). For staff, this will mean additional opportunity for professional development (which, of course, enhances the quality of service we offer to our clients).
EAF will unquestionably face funding challenges as we move forward. So it will be. Mission first.