IN THIS ISSUE:

• HIV/AIDS Is a Disease of Poverty
• Administration Says It Can't Solve the ADAP Crisis Alone - Tim Hillard Interviews the White House's Jeff Crowley
• Implementation of AIDS Strategy Goals Will be Challenging - More from Tim's Interview with Jeff
• ADAP Numbers Keep Growing
• HIV and Housing for the Poor
• Poverty, Education, and Access to Health Care
• APA Style - Arkansas, Poverty and AIDS
• Women, social Determinants, and HIV/AIDS
• Ask Dr. Rashbaum!
• This Is My Story
• Telling Our Stories in Verse

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Reports from the International AIDS Conference in Vienna have been coming hard and fast for the last couple of weeks, so stories have had to compete for press space. One story you may have missed was the results of a CDC study, published just before the Conference and presented there by its authors, that in heterosexual, not-drug-using populations in the U.S., the chance that someone is or will become infected with HIV is a factor of income: less income, higher rates of infection.

HIV appears to be a disease of color; infection rates among African-Americans and other minorities are undeniably higher than among non-Hispanic whites. When we adjust for income, though, we find that infections rates among the very poor are about the same for whites and minorities. HIV affects minorities more than whites because more minorities are poor.

Many of us will ask, How is this news? If we get our HIV care in an urban community health center, we see that poverty and color march together every time we sit in the clinic's waiting room. Studies in 1997 (Harvard Medical School) and 2006 (Journal of Acquired Immunodeficiency Syndromes) suggested a strong correlation between poverty and high HIV infection rates. We've known for years that there's a connection of some sort between poverty and HIV.

The new CDC study is news because it does the math to demonstrate that poverty is the driver for high HIV infection rates; at least among non-drug-using heterosexuals, the apparent correlation between HIV and color is a secondary effect of this country's historical connection between poverty and color. At comparable income levels, whites and non-whites have about the same chance of having to live with HIV.

Why is the link between HIV and poverty so tight? There are many reasons. This issue's contributors talk about housing instability, ineffective education systems, unequal access to health care, and much more. Our own Vanessa Johnson joins us in this issue to discuss the special challenges women living with HIV face and tell us how NAPWA's community trainings help them prepare to deal with them. A coming issue will deal with HIV in the South, where history, urban poverty, and rural poverty and lack of services make the epidemic uniquely hard to contain.

HIV's transformation from a gay men's disease to a disease of poverty makes one thing clear: the epidemic is now a social problem as much as it is a medical one. We are looking forward to great advances in HIV science - the mood in Vienna was cautious excitement - but we still need to pay attention to income inequality and all the problems that go with it. We can't control the epidemic without addressing the conditions in which it is free to spread.

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As the number of people on waiting lists for life-saving drugs remains at record levels, the Obama administration says it has done all it can and the burden is now on Congress and the states to come up with additional resources. In an exclusive interview with Positive Voice, Jeffrey Crowley, Director of the Office of National AIDS Policy, called the administration's reprogramming this month of $42 million for emergency ADAP assistance "unprecedented" and a demonstration of President Obama's concern. (Watch Crowley on NAPWATV.)

The administration's emergency funding for ADAP falls well short of the $126 million needed to plug current funding gaps in the ADAP program. Over 2,700 lower-income Americans are now on waiting lists in 13 states, a 65% increase over last month. Another 16 states are now imposing other restrictions like reduced formularies and lowering income thresholds, which has a devastating impact on those living with both HIV and poverty. Several pharmaceutical companies have responded with price freezes and discounts on HIV medications and the non-profit Welvista is offering access to a limited number of free drugs. Crowley says all these efforts are needed to solve the problem, but the main burden still rests with the cash-strapped states. (Watch Crowley onNAPWATV.)

Crowley says the administration will work with Congress on future ADAP funding, but he ruled out suggestions by Republican lawmakers and some HIV activists to divert stimulus dollars to relieve the current crisis, saying that money is committed to other "needy" programs.

The ADAP crisis has overshadowed the administration's release of its National AIDS Strategy (see accompanying story below) and seems to contradict a central goal of the plan to provide "unfettered access to high quality, life-extending care." Crowley admits frustration and warns of more "challenging" days ahead for HIV community. (Watch Crowley on NAPWA TV.) 

(Watch the entire Crowley interview on the ADAP crisis here.)

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Editor's Note: This is a video-enhanced story, click on the links provided. 

The Obama Administration's point man for implementing the new National AIDS Strategy says it will be challenging to reach the goals laid out in the plan. But Jeffrey Crowley, Director of the Office of National AIDS Policy told Positive Voice the plan's central goal of reducing HIV infections in the U.S. by 25% within five years is both aggressive and realistic. Setting a loftier goal, as some in the HIV community had hoped, would, according to Crowley, "not get us anywhere." (Watch Crowley's quote on NAPWATV.)

The national strategy calls on government to better coordinate all its HIV efforts. To reduce new infections, the plan says prevention should be targeted to those most affected by HIV: gay and bisexual men, Black Americans, Latinos and substance abusers. The strategy also seeks to increase access to care and improve the health of persons living with HIV, particularly low-income Americans. The plan promises to reduce disparities in prevention and care among racial and ethnic minorities. It says success for that goal will be measured by reducing mortality rates and increasing the number of people within those communities who have undetectable viral loads.

The strategy makes no explicit call for additional funding and specifically mentions "constraints" on the Federal budget. That funding gap has been criticized by some in the HIV community, including NAPWA. Crowley says President Obama will continue to propose modest increases in targeted areas, but, he tells Positive Voice, the nation must better use the $19 billion it currently spends on HIV and AIDS. (Watch Crowley's quote on NAPWATV.)

Progress on the national strategy will be measured in annual reports to the president. Crowley says success will depend not on the federal government alone, but states, municipalities and community-based organizations that he says must begin asking themselves tough questions. (Watch Crowley's quote on NAPWATV.)

Watch the entire interview on the National AIDS Strategy (Part 1) here.

Watch Part 2 here.

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No good news on the ADAP front. At the end of July, there were just under 2,500 lower-income Americans in thirteen states on ADAP waiting lists. Only two weeks later, we're about to break 3,000. Many people on waiting lists are turning to the makers of their medications for assistance, but there's no way one hundred percent of them are getting it. The paperwork is daunting, many will need their care managers' help to deal with it, and some may find they don't quite meet the drug companies' eligibility rules. Others, especially in rural areas, may not have access to care managers who know about the assistance programs.

AIDS Alabama's Kathie Hiers has been pointing out something worth noting in this Positive Voice poverty issue. Eighty-five percent of the people on waiting lists live in the South. If North Carolina had not moved in early July to get its numbers down from 800 to 200, it would look even worse. Southern states are balancing their health care budgets on the backs of the rural poor. In the short run, it's unjust; health care is a human right. In the long run, it's disastrous public policy. The people who get sick next year because they didn't have drugs this year are going to be very, very expensive.

Call your Representative, call your Senators. Congress can't move in this political climate unless the members know they have your support. You can get contact information at www.house.gov and www.senate.gov.

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Health care providers tell us that HIV+ people in stable housing do better than those living in shelters and on the street. They have a better chance of not having their drugs stolen. Going to the same bathroom every morning, they have a better chance of taking them on time. They can stay in better touch with their providers if their providers know where to reach them. And often they feel better about themselves; higher self-esteem can help people avoid high-risk sexual and drug behaviors. Rooftop Canada's Priya Gopalen says it best: "If we are doing a good job on housing, we are addressing HIV/AIDS."

To say the same thing from the other side of the coin, not having stable housing is devastating for people living with HIV. It destroys health and lives. PLWHAs without stable housing get sick and die sooner and are likelier to pass the virus on to others.

That makes the connection between HIV and poverty devastating, because poor people in general do not have adequate access to stable housing. There are estimates that half of people living with HIV will need housing assistance at some time in the years of their infection - because so many people living with HIV are poor, and the disease so often makes them poorer.

So we sat up and listened, last week, when National AIDS Housing Coalition's Nancy Bernstine talked about what the housing situation is today, for poor people in general and especially for poor people with HIV. There simply is not enough affordable housing for the poor. Market rents are unimaginably out of their reach. There is not a single county in the country, Nancy told us, where a single earner working full-time at minimum wage can afford to rent even a one-bedroom apartment at going market rates. That single earner may have multiple dependents, so a one-bedroom rental may not meet her family's needs. People who are not working - living on state income assistance, pensions, or SS disability - may be even worse off.

HUD provides some help. They offer many low-income housing assistance programs, including HOPWA (Housing Opportunities for People With AIDS) for people living with HIV. These programs are good, but not good enough. The number of rent-assisted units being provided is not even close to what is needed. The very number of programs makes the HUD system hard to navigate - bad enough for real estate developers and lawyers, impossible for poor people with limited education. And HOPWA has its own problems. First, there isn't enough of it, and, second, the outdated formula for distributing HOPWA funds among the states produces strange and bad results. The formula ensures lower distributions to Southern states, where HIV is now spreading rapidly and where - yes, you guessed it - poverty rates are among the highest in the country.

HOPWA can and should be expanded and restructured. Nancy Bernstine says, "As advocates push their elected representatives to direct more resources to HIV/AIDS, housing's role in preventing the spread of the virus and in better health outcomes cannot be overstated. Funding HOPWA at $410 million for FY 2011 would give an additional 14,000 households access to housing and related supportive services to help them access and remain in care. AIDS advocates should press for funding the National Housing Trust Fund, which has the potential to significantly expand housing available and affordable to extremely low income renters. As the National HIV/AIDS Strategy moves into the implementation stage, the AIDS community must demand that important omissions be addressed - including strategies that recognize housing as a proven, cost-saving prevention intervention."

NAPWA supports these "Asks." HOPWA will be needed as long as the HIV epidemic continues. But wouldn't be nice if we could address the structural causes of poverty in America and reduce the number of people with HIV who need HOPWA assistance?

For more information on housing for people with HIV, visit the National AIDS Housing Coalition. Our thanks to Nancy Bernstine!

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By Peter Kronenberg, Editor, Positive Voice

It isn't often that I step out from behind an editor's anonymity, but sometimes we all want to share personal war stories. For fifteen years, I worked for a good Medicaid HMO in Boston (yes, Virginia, there are some good HMO's). I came away with a good practical understanding of the mechanics and economics of health care. I also came away knowing what I had seen with my own eyes: poor people's access to health care is inherently unequal. I can call my old HMO good because it recognized that and tried to do something about it.

Why unequal? There are two main reasons. First, there are fewer services for poor people - in health care as in every other area of human needs. We all know how many doctor's offices say, "All commercial insurance plans welcome, we don't take Medicaid." Second, it is often unreasonably difficult for poor people to access even the services available to them.

Why is access such a problem? Our friend Neil, the author of this issue's This Is My Story, describes what happens so often: Every time I walked into a new agency, it was like: "Have a seat. Do you have Medicaid? Do you have an M11Q?" I had no idea what an M11Q was, but I didn't bother asking. Then I would be given an appointment to go back, but I never did. I never understood what just happened.

"I never understood what just happened" - and neither did they. Mutual incomprehension. Inadequate education on both sides. Poor people are poor, in part, because the schools available to them don't work. They certainly don't prepare them to navigate medical and insurance systems of Byzantine complexity. Service providers are often just as inadequately educated - not speaking their clients' languages, not competent in their cultures, not prepared to make the extra effort to make the paperwork comprehensible.

My Boston HMO worked hard to open the system up to poor people. We hired our member service representatives from the communities we served - same language, same educational level, same life experience. Our care managers waded into the paperwork with the members. And we contracted with our providers to make sure our Medicaid members got the same care as commercial group members - not similar, not "just as good," by contract exactly the same.

So I know, white boy from the suburbs that I am, that equal and culturally competent health care for poor people is possible. Successful HIV organizations serving poor people in cities also know it's possible; Neil finally found services he could access at New York City's Citiwide Harm Reduction.

But I also know it doesn't happen as often as it should. I've seen too many big city hospitals ask, "Do you have an M11Q," without ever asking themselves whether the question was one that anyone with less than a Ph.D. education could understand. And I've seen them ask it in English, to people who very obviously didn't understand English. It's important that poor people have exactly the same health care services available to them as to everyone else. It is also important that they have access to equal education. But it isn't just poor people whose education is lacking. Service providers need to be culturally competent and client-centered, so poor people can access the services available to them. Health care is a human right.

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By Diedra J. Levi, Executive Director of the Living Affected Corporation

Diedra (r) receiving a Positive Leadership
Award at AIDSWatch 2010

Diedra is a distinguished HIV educator and community activist working with poor people in Little Rock. If there is meaningful educational and service outreach in Little Rock today, it's because she has fought for it. NAPWA recognized her work with a Positive Leadership Award at AIDSWatch 2010, and we are delighted to have her share her reflections on the practical obstacles poor people face in accessing HIV care, once they know they are HIV-positive.

Patrick is living on $600 per month from a disability check which is a far cry from the thousands he made ten years ago as Little Rock's premier female impersonator. A simple trip to the doctor for his quarterly lab work has to be plotted. He has to borrow money to get to the agency that will give him a $10 gas card to get to the doctor's appointment. The gas card is only for a chain that has two locations (one on each end of town and we are in midtown). Patrick is no longer the voluptuous impersonator but a meager 115 pounds so I must go by and see if he has food. I do this and find about 10 incongruent items between the refrigerator and the cabinets.

Poverty is the underlying pretense for why Arkansas has the highest rate of unmet need. Those that are poor (and I must include myself and the staff of The Living Affected Corporation) are the main components of why cultural competency is not only about race and culture but about class. The hardest thing to educate those that make policy and funding decisions is that you can't make arbitrary decisions of what positive people should do when you have a check coming within two weeks, a home to go to, a car to drive, choices of meals and what to wear. The idea of basic physiological needs not being in place escapes the psyche of those that have become acclimated to such. Questions of why a client didn't make an appointment, why the client didn't answer a letter or an email can all be anchored in poverty: no transportation, transient addresses and definitely lack of a computer without internet access.

Our advocacy work is based on the paradox that HIV testing is counterproductive when adequate funding is not available for treatment. In reality HIV testing is counterproductive when food, clothing and shelter for the individual are not adequate. In order to get to the level where sexual expression (which is a normal body function) is safe, the remaining physiological needs must be in place to elevate to safety per Maslow Hierarchy of Needs. As we delve further into the care paradox as it relates to treatment we are finding that true treatment must be holistic or we perpetuate the stigma associated with this disease. How can we just address the disease of a hungry, homeless, person estranged from their family? Here's your Atripla, have a nice day.

The Living Affected Corporation emerged after years of no prevention work in Little Rock. Little did we know that establishing an office that targeted marginalized community members, we would become the only place outside of a gay bar to seek assistance, advice or directions without being stereotyped. So what do we do when someone says they need to come to the office for a test because they are sure they have been exposed but have no way of getting there? What do we do when in the pre or post-test counseling they tell us that they are living with someone for the time being in exchange for unprotected sex? Or when they just ask if we have anything to eat? The answer is we have to step outside of our scope of work and our limited resources and attempt to arrive at a creative solution.

The limited resources that are strained become even further diluted as we try to offer holistic services for an abyss of unmet needs beyond HIV treatment. With budgets that are minimal, while scrutinized under microscopes, we have to set a practical foundation that produces once inaccessible clients for care and services.

"Everyone has the right to a standard of living adequate for the health and well being of the person and their family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, loss of partner, old age or other lack of livelihood and circumstances beyond their control."

This is a quotation from the Universal Declaration of Human Rights. What has happened to this wonderful idea that we all have the right to this without the mention of a particular disease called HIV? Is this not saying that holistic healthcare is not a privilege but a right? Therefore as a right we cannot allow the gravity of this disparity to discourage or preclude us in discovering creative ways to address this inhumane reality...period! The margin between the HAVES and the HAVE NOTS has increased. Unfortunately policies are rarely made by the HAVE NOTS. The HAVE NOTS a/k/a the Subcitizens have not been even heard by the Supercitizen (HAVES) because closing the gaps in disparities requires too much of a sacrifice, namely giving up supercitizenship and becoming equal citizens.

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By Vanessa Johnson, Executive Vice President, NAPWA

Poverty is an inescapable reality for women with chronic diseases and disabling conditions 

Since the beginning of this epidemic, researchers sought answers for why the disease took hold and continues to spread. At the beginning of the epidemic, the answer seemed to settle on an individual's behavior. But after years of trying to address individual behavior, one of the most cogent conclusions reached is based on, to paraphrase an old metaphor, "No man is an island" - meaning that individual behavior is not the whole story, but may be one factor that explains vulnerability or risk for HIV infection.  A body of work has developed over the last decade that focuses on another set of factors under the rubric of social determinants. The World Health Organization defines social determinants as follows:

The social determinants of health are the conditions in which people are born, grow, live, work and age, including the health system. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels, which are themselves influenced by policy choices. [i]

 

The issue is not whether it is individual behavior, social determinants or a combination of both which increases or decreases one's susceptibility to HIV infection - almost reminds me of a previous discourse on whether it was genetics or environment that predisposed an individual to make certain choices or achieve certain benchmarks in life. Society is growing at a tremendous rate and we are becoming more sophisticated; thus the growing realizations that the questions posed to society by the AIDS epidemic are complex in nature and require thoughtful exploration at both the national and international levels. These questions with proposed answers and responses were highlighted in the National HIV/AIDS Strategy document released in July 2010 and the July 2010 International AIDS Conference.

One of the social determinants highlighted was poverty. This article will look at the impact of poverty on women, particularly women of African descent, living with HIV/AIDS.

HIV/AIDS represents a severely disruptive event. Once a woman is diagnosed with HIV, health and social implications come to bear, from troublesome symptoms to severe illness, from precipitous drops in employment and socioeconomic status to stigmatizing social encounters.  For women, particularly women of African descent, diagnosed with HIV/AIDS,[ii] the disruption is fierce. The physical, social and economic conditions that women experience often pre-determine: 1) their vulnerability for HIV infection, 2) the success of HIV prevention and care programs in addressing their vulnerabilities and needs, and 3) their ability to care for themselves and live successfully with this disease. HIV was the third leading cause of death for all women ages 35-44, and the first leading cause of death for African American women ages 25-34.[iii] Although HIV may be the primary reason for death in these women, the social determinants these women face also allow HIV to flourish and rob them of their health and lives. One of the most impactful social determinants for women living with HIV/AIDS is poverty.

Despite equal ability, women suffer from economic disparities. Women still are not receiving equal pay for equal work, let alone equal pay for work of equal value. For full-time, year-round workers, women are paid on average only 78 cents for every $1.00 earned by men.[iv] The economic disparities among women grow significantly when race and physical ability are factored into the equation. For women of color, the gap in equal pay is significantly wider. In comparison to men's dollar, African American women earn only 69 cents and Latinas just 59 cents.[v] The gap widens for women living with chronic diseases and disabling conditions.  Nearly two-thirds (64%) of women living with HIV/AIDS had annual incomes of $10,000.[vi] As a result, women with chronic diseases and disabling conditions are one of the poorest population groups, next to children, in our society.

NAPWA has developed, in partnership with Just Cause, three programs that are designed to build individual and collective economic opportunities via information sharing, education, skills building, and advocacy for women of African descent living with HIV/AIDS. The three programs are:

"       Common Threads

"       The ME Circle

"       Sudden Impact

Each program is a building block grounded in the methodologies of adult learning, self-help, and community building, enhanced by the cultural vitality and experiences of women of African descent.

"     Common Threads (Training)

Common Threads is a small-group, three-day storytelling training. The training provides participants with opportunities to learn new storytelling techniques that help explain possible vulnerabilities to HIV infection and begin to explore and integrate the various aspects of their life experiences into a cohesive, impactful story.  The take-home message is that participants, by sharing their stories, can reduce HIV-related stigma and encourage others to get tested and/or link to care.

"       The ME Circle (Application)

The ME Circle is a personal and group sustainability vehicle designed to ensure that women living with HIV/AIDS are not solely dependent on outside funding and resources to live. We are the ones that we have been waiting for and we will support our ongoing efforts with monies collected from our microenterprise circles or the ME Circles.

"       Sudden Impact (Advocacy)

The purpose of Sudden Impact is to help women of African descent living with HIV/AIDS make a strategic and timely transition to economic stability. Sudden Impact seeks to harness the collective energy of the Common Threads graduates to ensure that policies and programs are in place which support women who want to enter or go back to work, maintain their jobs and/or advance in their professional development.  There is a need for advocacy for economic protective policies such as:  Access to vocational rehabilitation services including education, job trainings, and start-your-own-business programs; return-to-work programs that protect Medicaid, Medicare and disability benefits; and, worker protection, including fair wages, and fair hiring and promotion practices.  Such protective economic policies will lead to greater self-sufficiency for women of African descent living with HIV/AIDS.

The programs presented here serve to liberate women of African descent from the bondage of fear and stigma and provide them with a place where they not only find their voice but become reacquainted with their dreams. If you are interested in getting more information about these programs, please feel free to contact me at vjohnson@napwa.org.

[vi] Kaiser Family Foundation (KFF), HIV/AIDS Policy Fact Sheets: Women and HIV/AIDS in the U.S. (July 2007)

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Every issue, the good doctor answers a question submitted by a Positive Voice reader. (Send yours to PositiveVoice@NAPWA.org,Attn: Ask Dr. R!) The reader question we chose for this issue is:

"I've been living with HIV for thirty years, and now I'm getting older. What do HIV+ people over fifty need to know about HIV and aging?"

Dr. Rashbaum answers,

I think this question sums up the amazing progress that has taken place over the past 3 decades of HIV. To have arrived at a place where we now think "50 years of HAART therapy" for an individual who we begin on a regimen to fight HIV!

Despite all the progress, HIV is an aging disease, and even though we are able to control the infection and keep the immune system fairly healthy, the fact that one is positive leads to chemical imbalances of proinflammatory mediators that help accelerate that aging process....some more than others. There was a nice study from the MACS cohort that looked at a concept called "fragility phenotype." This syndrome defined several physical/mental qualities which, if found, identify this health state in an individual. Age and duration of HIV were found to be significantly associated with this frailty definition, which was found to occur 10 years earlier in an HIV+ male than in a male who was not infected with HIV. Other reviews have suggested that a individual with HIV has an organ age that is 10 years older than his or her actual numerical age.

By 2015, more than half of those infected with HIV will be older than 50 years of age.  In the first decade of the epidemic, we never used to worry about pushing smoking cessation in our HIV+ patients because HIV was uniformly a death sentence. Now, we aggressively encourage all those modifiable life style changes that help improve one's health. It has been shown that immunologic function declines with age and T-cell responses are less robust, when one is older and starts HAART therapy, than when one starts at a younger age. A retrospective analysis from the VA, looking at more than 33,000 HIV-infected individuals from 1997-2004, found that the typical aging diseases (cardiovascular, diabetes, liver and kidney) occurred at a greater frequency in those who are HIV-positive than they did in the 66,000 HIV-uninfected controls population, also in the VA system.

HIV is considered by many to be a risk equivalent to coronary artery disease, so, as one ages with HIV, the patient and clinician should be aggressive in managing the cholesterol/triglyceride/blood sugar abnormalities that may occur, and typically will do this at an earlier age than in those uninfected. Malignancies, unfortunately, occur at greater rates in HIV-infected individuals, and the same holds true for age. So one may be more inclined to look for prostate cancer in a younger HIV+ male than typically recommended or colon cancer in both men and women with HIV. Typically, colonoscopies are done in individuals at age 50, or earlier if family history or other circumstances dictate. So, I try to encourage all of my patients with HIV to consider a colonoscopy at an earlier age. Osteoporosis occurs at an earlier age in those with HIV so, again, we might get a bone density earlier than typical. Prevention is a much better management practice than having to deal with something once you have it.

So, to answer your question....the same health screening I do for my patients who are not HIV positive, I do for my patients living with HIV, only at an earlier time. My inclination is to always look for anything in people with HIV, and I am usually comforted by not finding much. Plan for the future! Be aware of your finances...you need money to live as you get older and the magic word here is "get older". Be smart and do all those things that are good for you. Eat well, sleep well, minimize stress if you can, exercise ( that means a minimum of 150 minutes per week of moderate aerobic activity) - and get an annual physical exam, in addition to your routine visits with your health care provider.

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Neil is a PWA who's been through a lot and learned a lot. Our thanks to Neil, and to our friends at New York City's Citiwide Harm Reduction, who put us in touch with him! This is Neil's story. . . .

It's been six years now. Six years that have changed my life.

Back in 1994, I was diagnosed as HIV positive right after Thanksgiving. I had gotten sick and ended up in the hospital for about two weeks, and the doctors didn't know what was wrong. Just a couple of days before being discharged, I was asked to take an HIV test. At that moment, I knew this was it - the moment where I knew, but still doubted.

A week later, I went back for the results. I sat in a really small room, where all I can remember is being told I was positive. I remember having to tell my best friend; at that moment, she supported me the best way she could. Believe me, I went through so many emotions that it's hard to believe I'm still here.

Even though I had some support I still thought my world was over. Five months later, after having treatment for an infection, I spent one month in the hospital. I had another friend introduce me to someone he knew that worked at an agency in the Bronx called CitiWide Harm Reduction. After having tried so many other agencies, and not really feeling comfortable, I figured I would try one last time. At this point, I was still in my numb stage, where I had no idea what was going on. My body was going places, but my mind was somewhere else. Every time I walked into a new agency, it was like: "Have a seat. Do you have Medicaid? Do you have an M11Q?" I had no idea what an M11Q was, but I didn't bother asking. Then I would be given an appointment to go back, but I never did. I never understood what just happened.

After all that drama, I decided to try CitiWide, which is located in the South Bronx. The trip took me two hours from Coney Island, Brooklyn, but it was OK, because I was used to traveling to visit friends who lived in the Bronx. Once there, my first reaction was to turn back. But I gave it a chance, and here I am, six years later - part of an agency, and trying to make a difference. I was given information and used it the best way I could. I did trainings on HIV and AIDS, drug addiction, and medication for HIV and Hepatitis C. I learned so much that it wasn't enough - I had to experience it. So I then volunteered at CitiWide that helped me, and that opened up a whole new world that I didn't know existed. Before the volunteering, the agency had helped me get an apartment, which took me about four months, and a few viewings. I've now been volunteering for the past four years, not including two years as a participant. I'm also now co-chair of the Participant Advisory Board, where I listen and try to find solutions for participants whose needs are not being met. I also, serve on the Board of Directors for CitiWide Harm Reduction representing the participants of the agency. It's been an experience that has made me independent. It's also helped me find my self-worth and that of others, and has made me want to keep growing, and giving to a community that needs me. I'm still a work in progress, because I'm a hot mess.

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Poetry is a rare gift and a risky, brave way of telling your story: before you communicate to others, you have to communicate with yourself, and then have the courage to share that self-revelation. This issue's brave story tellers are two friends of NAPWA of many years' standing, board member Goulda Downer and Board Chair emeritus Judi Billings. They have a very special way of telling their stories - enjoy!

HIV and Me

HIV! Three letters that caused so much fear.
That troubled my soul, deep within;
Like dark clouds blotting out the sun.
They clouded my days with thoughts of gloom.
In a crowded world, I felt cold and alone. Dangling at the edge of a precipice.
But, although bent, I was not broken;
Though numbed, I did not die.

I am alive! I am alive!

HIV will not steal my time, my hope, my dreams. Will not steal my dignity.
It will not define me;
It will not transcend my destiny.
I live, not to bury my past, but to embrace my future,
I will write my own history.

Because I am alive! I am alive!

From the ashes of a broken spirit,
I have rebuilt my life. I am at peace.
My soul has been comforted.
Hope has embraced me,
Spoken my name and claimed me.
I will live my life abundantly.
I will dance in the light of peace,
In the warmth of hope.
I will honor and celebrate the best of me.

I am glad to be alive! I am glad to be alive!

     Goulda Downer
     © 2010. Inspired by and dedicated to 23 years
        of my caring for patients and their loved
        ones with HIV/AIDS.

So It Is

I hear a still, small voice
Resounding in my head.
It whispers that it's only
My illusions that are dead.

My body lives, my mind expands;
My heart receives my soul's commands
And I will do what life demands.

I always knew--and now know better--
Life provides a gentle fetter,
Tensile tether to the earth
Where we may find what life is worth.

Ah, life is good;
It's full and sweet.
Embrace its gifts!
Brook no retreat.

So I will journey reaching out,
Choosing trust,
Rejecting doubt.
My spirit will not stand for less
Than this belief in life's largess.

In peace I wake, in peace I slumber,
Ruing not a finite number
Marking days of this existence.
Enough for me each day's persistence.

I've never known--I still don't know--
What lies beyond this life's release.
But reason whispers, soft and sure:
Spirit life will never cease.

   Judi Billings

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The National Association of People with AIDS (NAPWA) believes in self-determination. We are passionate about making life better and more meaningful for all people living with HIV/AIDS. While the epidemic impacts us directly, we also impact the epidemic by identifying ways to reduce its new infections, mitigate its stigma and alleviate its suffering.

Working together, HIV Positive people and our allies turn obstacles into strengths, barriers into opportunities and prejudice into respect.

Join us in the fight. Join NAPWA now!

Frank J. Oldham, Jr.
President and CEO

© National Association of People With AIDS, 2010.