A CommUNITY-Based HIV/AIDS, Social Services & Survivors Support Network
315 W. 7th Street - Suite #2*Covington, Kentucky 41011-1391
859-261-HIVe1 (4481)* SoBankHIVe@zoomtown.com
World AIDS Day has a special place in the history of the AIDS pandemic. Since 1988 1st December has been a day bringing messages of compassion, hope, solidarity and understanding about AIDS to every country in the world, North and South, East and West.
The theme for world AIDS day is
“Educate, Commemorate, Understand,”
Commemorate, Educate and Remember
2003 World AIDS Day Observance
As of June 30 of this year, 2,113 Kentuckians are living with AIDS. An estimated 42 million people worldwide are living with AIDS. These people still need access to medical care, counseling, educational services and legal advice.
As of June 30 of this year, 1,835 Kentuckians had died of AIDS. It is the fifth leading cause of death for Americans ages 25-44. These people need to be remembered.
In 2002, five million people worldwide acquired HIV. Half of those new infections occurred in people between the ages of 15 and 24. These people need to be educated.
“Commemorate, Educate and Remember,” is the theme for the 2003 World AIDS Day Observance. A special service, featuring the Northern Kentucky Children’s Choir, will be held at 3 p.m. on Sunday, November 30, at Trinity Episcopal Church, 16 E. Fourth St. in Covington. A reception
will follow. The service is open to the community, and will involve a number of local organizations, including: AIDS Volunteers of Cincinnati, AIDS Volunteers of Northern Kentucky, Faith Communities HIV/AIDS Outreach, GLBTS Interfaith Clergy Network, and the Northern Kentucky Health Department.
“The issues facing those of us who work with HIV/AIDS patients are changing,” said Clint Ibele, Health Educator with the Northern Kentucky Health Department. “People with the diseases are living longer, making HIV/AIDS more of a chronic disease. A 38-year-old male diagnosed
today with HIV can expect to live within a few years of his normal life expectancy, as long as he follows a strict drug regimen and has no complications in his care. It may be 30 to 60 years before this man develops full-blown AIDS. In fact, it’s more likely that he will die of something other than AIDS.”
In a report issued in October, the Kentucky HIV/AIDS Advisory Council presented four issues to the Kentucky legislature for the upcoming session. Paul Trickel, Senior HIV/AIDS Case Manager, represents the Health Department on this committee.
“Our number one agenda item is to convince the state to begin confidential reporting of HIV cases,” Trickel said.
Currently, Kentucky law allows for anonymous reporting of HIV cases. Under this system, cases are identified only by a unique identifying number, consisting of the patient’s initials, date of birth and social security number. A confidential reporting system would use the person’s full name. Kentucky is one of only 12 states that does not use a confidential
reporting system, and the state may lose federal funding if it does not move to a confidential reporting system.
“There are two reasons for moving to a confidential reporting system,” Trickel said. “First, it would allow us to provide more current and accurate data to determine the true extent of HIV/AIDS in Kentucky. Currently, the funding that Kentucky receives for medical, social and
legal services is based on the number of AIDS cases (which are reported confidentially). The 2002 reauthorization of the Ryan White Care Act recommends that funding for HIV/AIDS prevention, education and services be based on the number of HIV and AIDS cases reported by a state. If Kentucky does not change to reporting HIV cases confidentially, we may lose considerable amounts of federal funding.”
As a second issue, the HIV/AIDS Advisory Council recommended an increase in state funding for the Kentucky AIDS drug assistance program, in which individuals can receive HIV/AIDS medication at no cost, based on income. The program serves 700 people, but has a waiting list of about
160 patients. The state currently contributes $90,000 a year to the program, a rate that has not increased since 1996. The average cost for a patient’s medicine is $8,670 per year.
“We realize that state budgets are tight right now,” said Gary E. Crum, District Director of Health, “But, for each $90,000 that the state contributes to the drug assistance program, 10 more Kentuckians could have access to medicines.”
The commission also made recommendations on the issues of needle exchange programs
and HIV/AIDS continuing education requirements for providers.
Local students are also doing their part to raise awareness of HIV/AIDS. In January, students at Simon Kenton High School in Independence will host a display of the National AIDS quilt at their school. The display will be open to the public from January 12-16.
The Northern Kentucky Health Department’s HIV/AIDS program provides case management and outreach services to residents of eight counties—Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen and Pendelton. Case management services include: assessment, crisis counseling,
service coordination and referrals and financial assistance with rent, medication and insurance. The outreach program targets at-risk groups, provides HIV testing, participates in advocacy groups, and provides professional education. For more information, please call 859.578.7660.
Prejudices, it is well known, are most difficult to eradicate from the heart whose soil has never been loosened or fertilized by education; they grow there, firm as weeds along rocks. - Charlotte Bronte
"When dealing with people, let us remember we are not dealing with creatures of logic. We are dealing with creatures of emotion, creatures bristling with prejudices and
motivated by pride and vanity." – Dale Carnegie
Saluting World AIDS Day; Secretary-General deplores burden of HIV-related stigma. Following is the
message of Secretary-General Kofi Annan on World AIDS Day, 1 December.
Date:
Monday 18 November 2002
The worldwide HIV epidemic has created a terrible burden for millions of individuals, families and communities around the world. Relieving it requires improved health care, better access to treatments, more vigorous prevention efforts, more effective social outreach, and support for those most vulnerable - particularly orphans. But there is
another terrible burden imposed by AIDS, which each and every one of us has the capacity to relieve: the burden of HIV-related stigma. The impact of stigma can be as detrimental as the virus itself. The solitude and lack of support it imposes are deeply wounding to those who suffer it. It should also hurt every one of us, for it is an affront to our common humanity. Some people
with AIDS are being denied basic rights such as food or shelter, and dismissed from jobs they are perfectly fit to perform. They may be shunned by their community, or most tragic of all, by their own family. The fear of stigma leads to silence, and when it comes to fighting AIDS, silence is death. It suppresses public discussion about AIDS, and deters people from finding out
whether they are infected. It can cause people - whether a mother breastfeeding her child or a sexual partner reluctant to disclose their HIV status - to risk transmitting HIV rather than attract suspicion that they might be infected. But the walls of stigma and silence are weakening. There is evidence of progress on every continent. Leaders are speaking out at the highest level.
The rights of people living with HIV/AIDS are being defending through the courts. Standards are being set in the workplace. Schools, the media and youth education programmes are helping to created a generation better equipped to live in the world of AIDS. And last year, at a special session of the General Assembly, all the Member States of the United Nations unanimously adopted a
Assemble, all the Member States of the United Nations unanimously adopted a Declaration of Commitment on HIV/AIDS which sent a clear message around the world. They pledged to enact or enforce legislation outlawing discrimination against people living with HIV and members of vunerable groups. But whatever laws and regulations are adopted, the most powerful weapons against stigma and
silence are the voices of the world's people speaking up about AIDS. By adopting the slogan "Live and Let Live", this year's World AIDS Campaign challenges us to ensure that all people, with or without HIV, can realise their human rights and live in dignity. On this World AIDS Day, let us resolve to replace stigma with support, fear with hope, silence with solidarity. Let
us act on the understanding that this work begins with each and every one of us.
While HIV is not transmitted in the majority of workplace settings, the supposed risk of transmission has been used by numerous employers to terminate or refuse employment. There is also evidence that if people living with HIV/AIDS are open about their infection status at work, they may well experience stigmatisation and discrimination by others.
"Nobody will come near me, eat with me in the canteen, nobody will want to work with me, I am an outcast here".
(HIV positive man, aged 27,)
Pre-employment screening takes place in many industries, particularly in countries where the means for testing are available and affordable.
In poorer countries screening has also been reported as taking place, especially in industries where health benefits are available to employees. Employer-sponsored insurance schemes providing medical care and pensions for their workers have come under increasing pressure in countries that have been seriously affected by HIV and AIDS. Some employers have used this
pressure to deny employment to people with HIV or AIDS.
"Though we do not have a policy so far, I can say that if at the time of recruitment there is a person with HIV, I will not take him. I' ll certainly not buy a problem for the company. I see recruitment as a buying-selling relationship. If I don't find the product attractive, I'll not buy it."
As I look back and review the coverage given by our local media (in particular the Sunday newspaper- The Enquirer) and the views they chose as representative of the community, it would seem to me that metro CincinNasty still thinks that "yes,
well, it's all terribly sad, but..."...
"Self-control the real cure for AIDS"
"AIDS, Holocaust are not synonymous"
"Abstinence education is the only way to go"
December 1, 2002
AIDS Is Not a Death Sentence
By WILLIAM JEFFERSON CLINTON
istorians will look back on our time and see that our civilization spends many millions of dollars educating people about the scourge of H.I.V. and AIDS, which has already taken 25 million lives and could infect 100 million people over the next eight years. But what they
will find not so civilized is our failure to treat 95 percent of people with the disease.
Given that medicine can turn AIDS from a death sentence into a chronic illness and reduce mother-to-child transmission, our withholding of treatment will appear to future historians as medieval, like bloodletting.
Consider that there are close to six million people in the developing world with AIDS who should be getting treatment but are not. That does not account for the 36 million people around the world whose infections will need treatment in the next few years. Worldwide, 14,000 people are becoming infected with H.I.V. each day, and the number of people with H.I.V. or AIDS will more than
double by 2010. To compound the horror, millions of children are born into the world carrying H.I.V. Without treatment, they, too, will sicken and die — but not before watching their parents die, leaving them orphaned.
Confronted with these awful facts, we can offer the historians of the future our excuses: too many countries are still in denial about the scope of the problem and what has to be done about it; many countries lack the nationwide health infrastructure to treat such a disease; most countries don't have enough health-care personnel to run a complicated treatment program; the necessary
drugs are expensive and unavailable to people in the poorest, hardest-hit countries.
But those facts only serve to outline the extent of the problem. They do not justify our failure to recognize the moral and practical imperatives to mount a full-throttle treatment program in conjunction with ongoing education and prevention efforts.
Some people argue that treatment is less important than prevention; a dollar spent on prevention, they say, goes further in slowing the spread of the disease than a dollar spent on treating someone who already has it. But this is a false choice. Prevention doesn't work unless large numbers of people agree to be tested. They won't agree to be tested if all they will learn is that they
are going to die.
They should be tested, of course, to save others. But they want to save their own lives, too. If we focus on treatment in addition to prevention, several good things would result.
More people will stop suffering in silence and be willing to get tested for H.I.V. if we offer treatment that will prolong their lives and spare the lives of others. People who have the disease will live longer, healthier lives. This will make a big difference not only to them, but to businesses that will keep productive workers, governments that will spend less on caring for those with
illnesses brought on by AIDS and children who won't become orphans.
Perhaps the greatest beneficiaries of testing would be pregnant or new mothers, who can transmit H.I.V. to their babies in utero or through breast-feeding. If they test positive, they can receive new drugs that can reduce the chances of such transmissions by 50 percent and give life to a generation of children now in jeopardy. I know women will willingly undergo testing if it is
accompanied by treatment. When I visited an AIDS clinic in Kigali, Rwanda in September, young women, many carrying infants, were literally lined up around the building waiting to be tested and, if necessary, treated with antiretroviral drugs.
And as more people are inspired to be tested, more will receive potentially life-saving education about AIDS transmission, regardless of their current health. With a new generation coming of age every few years, the need for AIDS education remains high, and no amount of mass marketing can match the power of one-on-one advice — the kind that can be provided by the trained professionals
at clinics where AIDS testing and treatment occur. These professionals can tell patients how not to spread the disease, if they have it, and how not to get the disease, if they don't.
Through testing, we can also help end discrimination against people who acquire AIDS. This is in keeping with the theme of the 15th annual World AIDS Day, which is today: "Live and Let Live: Ending Stigma and Discrimination." The more that people understand that AIDS is not only a preventable disease but a treatable one, the less they will shun those who have it. And as more
and more people are able to live with AIDS, their presence in families, workplaces and neighborhoods will help to reduce fears and misconceptions about the disease.
Can treatment work? It has in Brazil, where virtually all AIDS patients are given access to life-saving, generic drugs manufactured in that country. According to a Ford Foundation report, by integrating its treatment and prevention programs, Brazil has saved $422 million a year, in part because the number of people hospitalized with H.I.V. or AIDS has fallen 75 percent over the past
five years. Brazil's death rate from AIDS and related illnesses is down 50 percent, and the infection rate is low and getting lower.
This success can be replicated across the globe. To promote the development of AIDS treatment programs in places where they are most needed, my foundation has begun signing agreements with developing nations, including Rwanda, Mozambique and the 15 states in the Caribbean Community. We are putting teams of expert volunteers in these countries to help governments and health-care
institutions develop strategies to establish large-scale testing and treatment programs for their citizens.
These are small, grass-roots efforts. But if they succeed, they will save many lives and provide a model to the rest of the world. And the International AIDS Trust, which I lead with Nelson Mandela, is helping to mobilize the resources and leadership needed to focus on treatment and wage a real war on AIDS.
More must be done by governments, too, especially in answering the call of Kofi Annan, secretary general of the United Nations, for $10 billion to fight AIDS worldwide. Governments must also push pharmaceutical companies to make good on their commitments to provide drugs at discount prices or to stop trying to block the purchase of generic drugs by poor countries. Finally, they should
also help developing countries to increase the supply of qualified health workers, because without them a treatment program is impossible.
A lot is at stake. AIDS kills people in their most productive years. As a result, businesses in places where workers are sick and dying are losing a lot of money. And countries with large populations of people suffering with AIDS risk becoming unstable and susceptible to the forces of lawlessness, famine, terror and the demagogic appeals of dictators. Once the disease reaches epidemic
proportions, it is much more difficult for a poor country to stabilize its democracy, grow its economy or emerge as a responsible partner in the global community.
For all these reasons, we can and must do more to stop the spread of AIDS by doing more to treat people who already have it. Now that we have the medical capacity to save and improve the lives of millions of people, there is no other moral or practical choice.
As you know; this year World AIDS Day is the Sunday following Thanksgiving on December 1st, and we are now into the third decade of this global catastrophe. The focus on this years observance is the Stigma
and Discrimination of HIV/AIDS. I recently taped an interview for a World AIDS Day program being produced to air on local cable outlets. Sitting here in the living room/office space of My South Bank HIVe, I looked into the camera after being asked my thoughts and replied: "I Never expected to Live This Long". I've been thinking about
that ever since. I have been a Witness since the beginning and a survivor for the last eleven years. After I was tested and diagnosed in 1991, I began writing about my experiences and compiling them under the title: "Coming OUT of Hiding: A Retrospective Journey through AIDS...".
The purpose and goal of this endeavor: To use the rest of my life the best I can so that the people and places through which my journey leads me will remain a little bit better for me having passed their way.The importance of telling such stories was recently addressed by a keynote address given by Mary Fisher during National AIDS Awareness Month (http://www.hivcouncil.org/mary_fisher.htm).
To continue; I've been thinking a lot about that statement in my interview, looking back over my last eleven years and having a hard time coping with My Life with HIV. I finally seem to have emerged from this current Blue Spell and wanted to share these additional thoughts as well as begin compiling them on my web site.
Although we now know that the Virus doesn't discriminate against who it infects anymore, I think that the overriding point that SOCIETY still does is what the theme of Stigma and Discrimination was developed to address. It is that Stigma and Discrimination that continues
to present obstacles to an infected persons "Quality of Life" and I fear that the current medical advances and increased longevity have come to sugar coat the reality of Life, and Living, with HIV/AIDS:
"U.S. Supreme Court decision: "Subsequent decisions have held that AIDS is protected as a handicap under law not only because of the physical limitations it imposes, but because the prejudice surrounding AIDS exacts a social death which precedes
the actual physical one.
This is the essence of discrimination - formulating opinions about others not based on their individual merits but rather on their membership in a group with assumed characteristics." from the movie "Philadelphia"
My friend Tex wrote: Hi! Michael, I know it's really none of my business, but what kind of problems are you having coping. Anything I can do to help?"
That is what this part of the story is about. I am very fond of Quotations; as Marlene Dietrich is now quoted as saying: "I love quotations because it is a joy to find thoughts one might have, beautifully expressed with much authority by someone recognized wiser than oneself". This one describes my recent fog:
"A time comes in your life when you finally get it....when, in the midst of all your fears and insanity, you stop dead in your tracks and somewhere the voice inside your head cries out ENOUGH! Enough fighting and crying or struggling to
hold on. And, like a child quieting down after a blind tantrum, your sobs begin to subside, you shudder once or twice, you blink back your tears and begin to look at the world through new eyes. This is your awakening..."
from AWAKENING - author unknown
I cried out ENOUGH! after I obsessed over my last eleven years and took an emotional roller coaster ride. I missed meds by putting off ordering refills while I wrestled over whether or not I could, would or should. However; they arrived today and I've had a re-awakening.
I will be sharing my story In honor of and on World AIDS Day.
Somedays, Life in The HIVe's a Bitch!!!
For now though, just about everything I've written is contained in my web site or one of the many files that litter The HIVe and continues to be a "work in progress". My dream has always been that when I cease writing and have left this earth, it would be published and passed along to others making the same
Journey. That's the goal that helps me get out of bed each morning. However, as I was looking back over it all and considering where I am now, I felt that it had all been in vain. Even though I seemed to be beating the deadline, I had failed to live up to my mission statement.
A friend from the UK said:Years ago I thought that World Aids Day was a pretty good idea. Something to make Joe Public think about aids a little bit more than normal. Since WAD was instituted I've seen it go from a consciousness raising event to an occasion where everyone says "yes, well, it's all terribly sad, but..."
A couple of years ago I was reading about people doing special stuff on their websites for WAD and I decided I'd had enough. As far as I'm concerned, every day is World Aids Day. I created the gallery at http://www.craftman.co.uk/aids/
, which is available 365 days a year. I've suckered a few people who, when they've viewed the main index page of the site, expect the link "aids" to take them to a list of "helper" programs that I might use :)
"Don't wait till World Aids Day to do something about aids: do it now." Steve
He's right, of course, and that's what I've been trying to do, everyday with every breath I take. But as I said, "Somedays, Life in the HIVe's a Bitch!". That's why I still have to believe that World AIDS Day is important.
Perhaps for no other reason than it doesmake Joe Public think about AIDS a little bit more than normal. And
it comes at a perfect time of the year and this year on a perfect Day on a perfect weekend...
From what I've seen and heard so far, locally we seem to have let the opportunity turn into an occasion where everyone says "yes, well, it's all terribly sad, but..."rather
than a well publicized and planned consciousness raising event. The planned cablecast that I participated in taping is the only thing I'm aware of here.
"He who conceals his disease cannot expect to be cured." ... an Ethiopian Proverb
As Mary Fisher talked about recently, it is the telling of our stories that is key to making sure that every day is World Aids Day.To honor World AIDS Day, I
wanted to use the strength and creative energy from my recent re-awakening to continue the telling of my story.
Although you may not have read anything I've written yet, you have lived through the same times and seen many of the same headlines, stories and events that I have. In her recent remarks, Mary Fisher said:"When first I was diagnosed with HIV in 1991, and when first many of you joined the fight, the AIDS community had its own story. It was a story of mysterious reports and sudden wasting, of an unnoticed community of hemophiliacs whose lives were suddenly being cut short and a previously hidden gay community whose fabric and texture was suddenly, brutally, being exposed by AIDS.
Headlines told stories of families making three discoveries simultaneously: their brothers were gay, their brothers were sick, their brothers were dying."This spoke strongly to me as I was also diagnosed in 1991 and am a gay
man. However, I came out to my family with the first discovery in 1978. The response wasn't pretty and I was told I'd have to leave my childhood home.
At the end of the movie"Hope Floats"someone says:"Childhood is what you spend the rest of your life getting over.". Looking back and considering my life in a "western" civilization, I'd have to go further and
say that it's really Childhood and Adolescence that's what you spend the rest of your Adult life getting over.
In her magazine, Oprah says in part:"Think back for a moment on your history - not just where you were born but the circumstances that contributed to your being here. Consider what you believed about yourself based on what others told you directly and indirectly, since 93 percent of communication is
through nuance and action, not words. How were you treated? That is what defined how you experienced the world - both the moments when you felt valued and wanted and the moments when you felt wounded and sure you'd never be fulfilled. Though you've probably had times when you didn't want to press on, you have survived your path. You are still here, still standing -
and what an amazing journey your life has been...
What I know for sure is that your life is a multipart series of all your experiences - and each experience is created by your thoughts, intentions, and actions, to teach you what you most need to know. Your life is a journey of learning to love yourself first and then extending that love to others in every encounter. How can you travel
on that road without fear? Whenever I'm faced with a difficult decision, I ask myself: What would I do if I weren't afraid of making a mistake, feeling rejected, looking foolish, or being alone? Remove the fear, and the answer comes into focus.
If you're holding anyone else accountable for your happiness, you're wasting time. You must be fearless enough to give yourself the love you didn't receive. Begin noticing how every day brings a new opportunity for your growth. How buried disagreements with your mother show up in arguments with your spouse. How unconscious feelings of unworthiness
appear in everything you do and don't do. All these experiences are your life's way of making itself whole - sometimes whispering, often screaming. Pay attention. Every choice gives you a chance to pave your own road. Keep moving. Full speed ahead."http://www.mwcltonline.org/Inspirations.htm
And the headlines, stories and events that are part of my experience:
Bare-backing, piglet parties and the return to unsafe sex.
Increased infections, especially among the young.
U.S. Warned Against AIDS Complacency
About 1 million Americans are infected with HIV, which causes AIDS.
The lack of additional progress against the virus likely stems from several factors, including the large number of infected people who either do not know they have the virus or are not getting treatment.
"Today's epidemic is very different from the one we faced a decade ago. The populations at risk, the attitudes about infection and the science of HIV have all changed."
Strategies known to prevent its spread still are grossly underused.
Scientific discoveries in HIV and AIDS also seem to be merely incremental, experts said. New drugs that do the same thing — but slightly better — are emerging, but there's no vaccine or blockbuster treatment around the corner.
Making more progress against HIV will require getting more people tested and treated early in their infection, and developing drugs that work better and are simpler to take.
There have been slow but steady increases among heterosexuals, with diagnoses increasing 10 percent between 1998 and 2000.
For those without the disease, the growing pool of HIV infections means a greater chance of becoming infected and an even greater need to protect themselves.
"Americans ... don't have the same sense of urgency or crisis which characterized the early years of the epidemic. Some are becoming bored with HIV after 20 years, some are simply tired of the messages and behavior change. And many didn't realize they were signing on for a lifetime of condom use."
However, the ultimate goal is to prevent infections from occurring in the first place.
Many people speak of complacency now that HIV is treatable, and some even are skeptical that further progress can be made in the United States.
HIV/AIDS is a disease at once amazingly virulent and shockingly new. Only a generation ago, it lay undetected. Yet in the past two decades, by the reckoning of the Joint UN Programme on HIV/AIDS (UNAIDS), about 65 million people have contracted the illness, and perhaps 25 million of them have already died. The affliction is almost
invariably lethal: scientists do not consider a cure to be even on the horizon. For now, it looks as if AIDS could end up as the coming century's top infectious killer.
We can't sit back and wait for a vaccine. Instead, we must renew HIV prevention in the United States.
"We must revive the passion with which the U.S. once faced the HIV epidemic, with a strong and pre-eminent focus on preventing the spread of the virus."
I'm doing the best I can, but it's not easy. That's my story and I'm sticking to it. I recently sent a note to Oprah suggesting that she do a story on: "Life, and Living, with HIV/AIDS in America" as a result of this article. As a witness from the beginning and a survivor for the
last eleven years, I expressed my deep concern that the current medical advancements and increased longevity had only served to sugar-coat the reality doing a disservice to the public and actually impeding prevention efforts. This was brought home to me in the headlines, stories and events that are part of my experience.
I am very well aware that mine is a rather dark story that people do not want to hear, but I tell it to counter the sugar coating for the sake of prevention. I'm hoping that a heaping dose of my honest reality about "Life, and Living, with HIV/AIDS in America" - "that most of the time, it sucks... Big Time!" might succeed where the other side of the story hasn't.
Thanks for allowing me to share my Journey with y'all.
Best Regards,
Michael 11/22/2002
"I used to be afraid of dying, but I'm not anymore. I'm more afraid of what happens to the people who live..." from "And The Band Played On"
"If liberty means anything at all, it means the right to tell people what they do not want to hear." George Orwell
For the POZ CommUNITY At Large on The South Bank; a HIVe of support, education, information, abundant in shared experiences aglow with the warmth of acceptance for all who shall seek us out... WELCOME!!!
My Stories - 1991 thru 2002
All the Colors,
in all the Flags and the Faces of All the
Nations, Causes, Countries, Cities, Counties, Corporations, Denominations, Monarchies, Municipalities, Papacys, Religions, Republics, States, Territories can only be found in one place on the Globe...
Greetings!
I logged these thoughts shortly before departing Wallace Woods and "The Holiday House"!
In the article "2002 for beginners - Start the New Year with 8 Resolutions You Can Make and Keep", Timothy Murphy advises:
"#8 - FREE YOUR HEART, FEED YOUR SOUL: Not to get all Oprah on you, but if you're going into 2002 with old resentments - against an ex, family or fallen-out friend - either patch things up or let the anger go. According to Everett
Worthington, a psychologist who studies the health effects of forgiveness, "by giving an unwarranted gift to someone who doesn't deserve it, we find paradoxically that it is we ourselves who are freed from that bondage." That can mean lower levels of stress, depression, blood pressure - all coups for HIVers.
So that leaves just you and the universe. How do you talk to each other? Whether it's through an organized house of worship, some form of meditation or prayer, volunteering your time to others or even just a conscious gratitude that every day is a gift, reaching out to something bigger than yourself may greatly enhance all those
pills, powders, and protein shakes. (Studies correlate more prayer with more CD4 cells - honest!) And keep in mind these words from HIVer Mark V.: Any experience - be it sex, nature, art or hilarity - can be spiritual if you are present for it."." From the January issue of POZ
This struck me because I consider Oprah one of my mentors and try to practice forgiveness as she once defined it: "Forgiveness is giving up the Hope that the past could be different". It also struck me because over the last ten years, I have come to learn that
by giving an unwarranted gift to those who don't deserve it, it is I who is freed from that bondage of anger.
I had read this article weeks ago and set it aside in my commentary file. I was reminded of it as I watched Tom Hanks' stunning performance in "Philadelphia" again last night. I was watching for two reasons - to remind myself of how it still really is out there, and to write down this
passage:
The Precedent: "The Federal Vocational Rehabilitation Act of 1973 as a reference for this Supreme Court decision: "Subsequent decisions have held that AIDS is protected as a handicap under law not only because of the physical limitations it imposes, but because the prejudice surrounding AIDS exacts a
social death which precedes the actual physical one.
This is the essence of discrimination - formulating opinions about others not based on their individual merits but rather on their membership in a group with assumed characteristics."
In many ways, I consider that I died and have been a dead man walking since October 3, 1991. Most assuredly since October 10th, when Perkins learned my status and "constructively discharged" me.
My mission is to continue reaching out to something bigger than myself so that I may enhance all those pills, powders, and protein shakes; to live to tell as long as I am able and to share my experiences with any one who may benefit from what I've learned.
"He who conceals his disease cannot expect to be cured." ... an Ethiopian Proverb
"Community in Search of an Identity"
By Mary Fisher
Flying back to New England yesterday was interesting. I've always loved this part of the country and have enjoyed splendid times here. My husband, Brian, and I met and lived in New York. Brian died in 1993 and is buried in New England. It was in New England that I first met Larry Kramer, the founder of ACT-UP, who has since become a great friend.
Larry is one of the nation's finest playwrights, and he never fails to make me laugh. I was standing on a stage in New England, substituting for Arthur Ashe who wasn't feeling well, when the announcement came that Arthur had died. I let my mind review all those moments yesterday, flying from Florida where my sons and I moved recently to be nearer family. New England is important territory to me,
and you're important people.
I want to talk this morning about what it takes to create a community, because I believe the idea of an "AIDS community" is mostly a myth. There is no such beast. Some of us have AIDS; some of us enjoy community. But we'd be hard-pressed to give any kind of definition or meaning to the idea of an "AIDS community." And it's too
bad this is true. If ever there was a group in need of community, it's the group represented here this morning: people with AIDS and those who care about us. We would be a community full of suffering and stigma, but also a community full of humor and power. We could be an international community, because the virus has made us so; we could be a supportive community... if we would make us so. The
virus has done a marvelous job of finding those who are Black and White, gay and straight, young and old, male and female, African and American. But we've not yet learned to imitate the virus's ability to enroll everyone in a single community...
Hello... I live in Maryland and am a foster/adoptive mother. I have one son now whom my husband and I are in the process of adopting. We are taking a baby next week who is 2 months old. His mother is HIV positive and the last HIV test they did on the baby was also positive. The hospital says it could be a false positive and that the neg or pos status isnt for sure
until the baby is at least a year old. I am fairly new to the world of HIV and I need to educate myself. I had a friend die earlier this year of AIDS and it was the most heart wrenching thing I have ever gone through. I guess what I need is resources and advice or the risks of having my 8 month old son and this new baby together. I know how you can and cannot get HIV but I have a very close
minded family and my mom is freaking out telling me how I am putting my 8 month old son at risk and how can I do this..so on and so forth. I also need to know health wise what I need to look for with the new baby. He was a preemie born at 27 weeks and is coming home on oxygen and only weighing 4.8 pounds. I want this baby to have a family and to know love. No other family contacted about his
baby wanted him except us. And this baby deserves a chance I think. I am sorry this is so long. I just need some support and help. Everyone except my husband thinks I am nuts for taking an HIV baby.
Once you find out you are positive you have one of two choices, either get busy dying or get busy living, which would you chose? [hiv-aids-support] @ Yahoo Groups
U.S. Warned Against AIDS Complacency Sun Jul 7, 2002
By EMMA ROSS, AP Medical Writer
BARCELONA, Spain (AP) - The United States must revive the passion it once had for tackling the AIDS epidemic, otherwise infection rates
could start climbing again, the U.S. AIDS prevention chief said Sunday.
From
AIDS Is NOT Over
Dear Media Member:
As representatives of the foremost U.S. AIDS service organizations, we urge you to consider carefully the following key points regarding the AIDS epidemic in 1997.
The past year has brought the most exciting advances in the treatment of HIV and AIDS since the epidemic began in 1981. As you know, dramatic improvements in drug therapies have translated directly into prolonged life spans for many people with HIV and AIDS. For the first time, deaths from AIDS in the United States dropped 13% across the
country over the first half of last year. Indeed, new drug therapies such as the protease inhibitors have enabled many people with AIDS who once were wasting and bedridden to reclaim their lives, regain their health, and re-enter the workforce.
However, the hope felt by those of us battling AIDS is countered by new challenges. While effective combinations of protease inhibitors have thrown a lifeboat to many people with AIDS, we are still navigating through rough waters. The drugs' effectiveness and tolerability vary widely among people, and their extreme expense puts them out
of reach for the vast majority of people with HIV. In fact, it is estimated that a mere 5% of all people with HIV have access to them. Even more importantly, protease inhibitors do not prevent a single HIV infection, and media messages hailing the imminent end of AIDS may actually be undermining some HIV prevention efforts. The end of AIDS will come only when an effective AIDS vaccine is
developed, and the slow rate of progress in this difficult area of research will not bear fruit until well into the next century.
As representatives of the foremost U.S. AIDS service organizations, we urge you to consider carefully the following key points regarding the AIDS epidemic in 1997.
Access to the new drug therapies is the basic problem for many people with HIV. To be truly effective, protease inhibitors must be used in combination with at least two other anti-HIV drugs. Annual costs for this treatment average about $15,000 per person. Without private health insurance, Americans must rely on
public programs such as the AIDS Drug Assistance Program (ADAP), a federally funded initiative to provide AIDS-related drugs to people with HIV. Most ADAPs (which are administered by states) currently are so strapped for cash that they're being forced to ration the drugs among their applicants. Inadequate federal funding of these programs is financially illogical, as the new drug therapies have
been scientifically proven to reduce healthcare costs and hospitalizations among people with HIV.
When HIV-positive people actually get their hands on these therapies, a new set of concerns arises. First, will they be effective? Experts estimate that up to 30% of patients will not respond to treatment. After years of treatment with older anti-HIV drugs, their viruses may have resistant mutations that render the newer drugs useless.
Second, if they do actually reduce the amount of virus in the patient's bloodstream, will he or she be able to weather the drug's sometimes crippling side effects? Protease inhibitors, for many people, are intolerable because of nausea, diarrhea, vomiting, headache, kidney stones and serious drug interactions with other medications. In fact, anywhere from 1 in 100 to 1 in 1000 patients
taking protease inhibitors may be at risk for developing diabetes or hyperglycemia from treatment with these drugs, according to an advisory released by the Food and Drug Administration on June 11, 1997.
A final problem with these new treatments is understanding the best way to use them. Four protease inhibitors join seven other antiviral drugs to stock our arsenal against HIV. These therapies must be used in combination to be truly effective and to avoid drug resistance. With so many permutations at our fingertips, we don't yet
understand which combination is the best, or when that combination should be initiated in the course of someone's disease. These uncertainties will only be ironed out by further clinical trials. Enlisting a physician who's informed of the latest research in this area is a life-and-death matter for people with HIV.
HIV-positive individuals who had a doctor experienced in the nuances of HIV treatments had a 31% lower risk of death than patients whose physicians were the least AIDS-experienced, according to a 1996 University of Washington study.
Protease inhibitors do not prevent new HIV infections.
Despite the exciting advances in treatments, new HIV infections remain relatively steady at 40,000-50,000 Americans per year, according to estimates from the U.S. Centers for Disease Control and Prevention. However, the epidemic is losing its gay, white male face more and more every year. Increasingly, the faces
are those of women, youth and people of color, and unfortunately it is these groups of people that have the least access to quality medical care. These changing demographic trends demand that we tailor new HIV prevention programs to better serve groups at increased risk. Some of the facts on where the epidemic is moving:
*AIDS is now the leading cause of death among African Americans. Black men are almost six times more likely to get infected compared to white men, and black women are 16 times more likely to get infected than white women.
*Fifty-two percent of AIDS cases occurred among African Americans and Latinos, yet these two population groups represent an estimated 13% and 10%, respectfully, of the total U.S. population.
*Half of all HIV infections happen among individuals who are 25 or younger, and one in four happen among individuals 20 or younger.
*HIV is spreading almost six times as quickly among women as among men.
*Elsewhere in the world, the situation is far worse. Last year, almost 3 million people around the world were infected with HIV. Most of them were under age 25, and half of them were women. 400,000 new HIV infections occurred among children.
*Protease inhibitors are doing nothing to curb this rising tide of new HIV infections. In fact, these new therapies may be exacerbating the situation. Media reports of AIDS becoming a chronic manageable illness, and whispers of possible viral eradication, may lead some people to become less vigilant with safer sex and safer injection
practices. Some liken protease inhibitors to the "morning after pill." Indeed, San Francisco has become the first city in the United States to offer a controversial "post-exposure HIV clinic," in which patients who've had unprotected sex or shared needles to inject drugs will receive immediate antiviral therapy in an attempt to prevent HIV from
"taking hold" in the body during these first few critical hours of HIV infection. It is yet to be seen what the consequences of this program will have on the behavior of individuals in the community.
*As an example, through its National High School Quilt Program, in 1997 the NAMES Project Foundation is taking the AIDS Memorial Quilt to three high schools in every U.S. state. The Quilt serves as the centerpiece of a week of HIV prevention activities for high school-aged youth, and serves as a catalyst for discussion of AIDS and its
related issues. Nearly 90% of students surveyed said they would take steps to avoid HIV infection as a result of seeing the Quilt.
*To meet the needs of women with HIV-and help head off the spread of HIV among women-New York City's Gay Men's Health Crisis (GMHC) in late 1996 launched its Department of Women's Education Services. In addition to safer-sex workshops for women previously sponsored by GMHC, the department also will hold a series of community forums,
collaborate with other community-based organizations in the creation of new support groups, and coordinate agency-wide services for women to better serve its female clients.
*With HIV infection rates on the rise among youth ages 14-20 in the Seattle/King County, Washington area, the Northwest AIDS Foundation has launched Project ACTION to address this disturbing trend. The program works with local business to install low-cost condom vending machines in locations frequented by
youth. In addition to condom vending, the project also focuses on community mobilization, media and peer education. The goals of Project ACTION are to make condoms readily accessible to sexually active youth, create a strong health promotion message, and train youth to conduct workshops that teach HIV prevention, abstinence and gotiation and refusal skills to delay the onset of sexual activity.
..."
U.S. AIDS cases and HIV infections have remained fairly stable since 1998 at about 10,000 new infections every three months, but that overall stability may mask reported increases in HIV infections among heterosexuals, said Dr. Ronald Valdiserri, deputy director of the National Center for HIV, STD and TB Prevention at the Centers for Disease
Control and Prevention.
About 1 million Americans are infected with HIV, which causes AIDS.
The lack of additional progress against the virus likely stems from several factors, including the large number of infected people who either do not know they have the virus or are not getting treatment.
"Today's epidemic is very different from the one we faced a decade
ago. The populations at risk, the attitudes about infection and the science of HIV have all changed. And so must our prevention efforts," said Valdiserri, who presented new research at the International AIDS Conference in Barcelona.
More than 15,000 people from around the world have gathered here for the weeklong 14th International AIDS Conference, looking for
solutions to an epidemic infecting 40 million people worldwide, more than half of them in Africa.
Dr. Peter Piot, executive director of the U.N. AIDS program, said Sunday there was no indication the epidemic is leveling off worldwide, and strategies known to prevent its spread still are grossly underused.
Scientific discoveries in HIV and AIDS also seem to be merely
incremental, experts said. New drugs that do the same thing — but slightly better — are emerging, but there's no vaccine or blockbuster treatment around the corner.
Making more progress against HIV will require getting more people tested and treated early in their infection, and developing drugs that work better and are simpler to take, Valdiserri and other experts said.
However,
the ultimate goal is to prevent infections from occurring in the first place.
Valdiserri presented research on new HIV infections in 25 states to provide a snapshot of the situation in the United States. There is no national HIV surveillance program, so complete nationwide figures do not exist.
The 25 states exclude California, New York and Florida and account for
only one quarter of the HIV infections nationwide, he said.
Because 13- to 24-year-olds are more likely to have been recently infected, trends in this age group are a more accurate indicator of recent HIV infection patterns, Valdiserri said. Diagnoses among that group remained somewhat stable throughout 1994 to 2000.
"This seeming stability may not tell the whole
story," Valdiserri said.
When the researchers examined the statistics by risk group instead of age group, a different picture emerged.
"There have been slow but steady increases among heterosexuals, with diagnoses increasing 10 percent between 1998 and 2000," he said.
The majority of those infections — 75 percent — were in black Americans, with black
women accounting for almost half the cases among heterosexuals between 1994 and 2000.
While Latin Americans account for a low proportion of HIV cases in the 25 states studied, at a national level they are disproportionately affected.
The first step to making progress now is to recognize that the HIV epidemic is different today than it used to be, Valdiserri said.
There
is a growing group of people infected with HIV who face a lifetime of maintaining safe sexual practices. Those people are living longer, healthier lives thanks to new treatments, and they continue having sex.
Valdiserri said research suggests that almost 70 percent of people recently diagnosed with HIV report being sexually active within the last year. Between 57 and 75 percent
said they used a condom the last time they had sex.
For those without the disease, the growing pool of HIV infections means a greater chance of becoming infected and an even greater need to protect themselves, Valdiserri said.
"Americans ... don't have the same sense of urgency or crisis which characterized the early years of the epidemic," Valdiserri said.
"Some are becoming bored with HIV after 20 years, some are simply tired of the messages and behavior change. And many didn't realize they were signing on for a lifetime of condom use."
Many people speak of complacency now that HIV is treatable, and some even are skeptical that further progress can be made in the United States, Valdiserri said.
"We can't
sit back and wait for a vaccine. Instead, we must renew HIV prevention in the United States," he said.
"We must revive the passion with which the U.S. once faced the HIV epidemic, with a strong and pre-eminent focus on preventing the spread of the virus."
Nicholas Eberstadt holds the Henry Wendt Chair in Political Economy at the American Enterprise Institute and is Senior Adviser to the National Bureau of Asian Research. This essay draws on a longer study prepared with the assistance of Lisa Howie; for more detailed results see www.AEI.orgffischolarsffieberstadt.htm.
GRIM TOLL IN RUSSIA, INDIA, AND CHINA
HIV/AIDS is a disease at once amazingly virulent and shockingly new. Only a generation ago, it lay undetected. Yet in the past two decades, by the reckoning of the Joint UN Programme on HIV/AIDS (UNAIDS), about 65 million people have contracted the illness, and perhaps 25 million of them have already died. The affliction is almost invariably lethal: scientists do
not consider a cure to be even on the horizon. For now, it looks as if AIDS could end up as the coming century's top infectious killer.
At present, the HIV/AIDS pandemic, though global, is overwhelmingly concentrated in sub-Saharan Africa. Although this situation has exacted a terrible human cost, the rest of the world has been largely unaffected by Africa's tragedy. Things will be very different, however, in the next major area of HIV infection. Eurasia (which for the purposes of this essay is
considered to be the territory encompassing the continent of Asia, plus Russia) will likely be home to the largest number of HIV victims in the decades ahead. Driven by the spread of the disease in the region's three largest countries -- China, India, and Russia -- the coming Eurasian pandemic threatens to derail the economic prospects of billions and alter the global military balance. And
although the devastating costs of HIV/AIDS are clear, it is unclear that much will be done to head off the looming catastrophe.
WORLDS APART
Today HIV/AIDS is decimating sub-Saharan Africa. According to UNAIDS, as of late 2001 more than 28 million of the world's roughly 40 million HIV carriers lived in that region, and about 9 percent of all sub-Saharan inhabitants between the ages of 15 and 49 were HIV carriers. (In parts of the continent, the rate is far higher: adult infection exceeded 30 percent
in four countries last year, and in Botswana it was near an almost unimaginable 40 percent.) UNAIDS' best guesses put AIDS-related mortality in sub-Saharan states at over two million in 2001 -- suggesting that the disease accounted for every fifth death. So far perhaps 20 million sub-Saharan people have perished in the pandemic.
Africa's AIDS catastrophe is a humanitarian disaster of world historic proportions, yet the economic and political reverberations from this crisis have been remarkably muted outside the continent itself. The explanation for this awful dissonance lies in the region's marginal status in global economics and politics. By many measures, for example, sub-Saharan
Africa's contribution to the world economy is less than Switzerland's. In military affairs, no regional state, save perhaps South Africa, has the capacity to conduct overseas combat operations, and indeed sub-Saharan governments are primarily preoccupied with local troubles. The states of the region are thus not well positioned to influence events much beyond their own borders under any
circumstances, good or ill -- and the cruel consequence is that the world pays them little attention.
Circumstances are rather different in the world's other area of rapidly spreading HIV infection. Eurasia is home to the great majority of the world's population; five out of every eight people on the planet live there. It has substantial economic weight -- its combined GNP in 2000 of $15 trillion exceeded that of either the United States or Europe. Militarily, it
is home to four out of five of the world's million-strong armies, and four of the seven declared nuclear states. Thus, unlike in sub-Saharan Africa, unexpected shocks there -- such as the unfolding HIV/AIDS epidemic -- will have major worldwide repercussions.
In absolute terms, HIV/AIDS is already firmly established in Eurasia. According to conventional estimates, more than 7 million of the region's inhabitants were HIV carriers in 2001. And according to those same official estimates, it took less than a decade for sub-Saharan Africa's HIV population to leap from 7 million to 25 million.
It must be emphasized that there is currently no reliable method for accurately forecasting the long-term trajectory of the HIV/AIDS pandemic. Nevertheless, the prospect of tens of millions of Eurasian HIV cases -- and AIDS deaths -- in the decades ahead is by no means fanciful. To the contrary, absent a cure or a vaccine, it is quite possible that the center of
the global HIV/AIDS crisis, in terms of absolute numbers, will shift from Africa to Eurasia over the coming generation...