Category Archives: HIV

GA Republican Congressman Reminds Me That Conditions Of Life Are Awesome & Unappreciated!

Georgia Congressman Rob Woodall’s Statement That He Accepts His Government Insurance Because “IT’S FREE!” Reminds Me Of A Central Truth…

Conditions of Life Are Awesome!

See May 26th urGe, “Georgia Congressman Rob Woodall Accepts His Government Insurance Because ‘IT’S FREE!’:” Woodall supports elimination of all group and employer-based health care insurance and seeks that every individual should have to purchase their own individual policy on their own… and if you’ve got a pre-existing condition and cannot obtain your own insurance, he does not care. If you’re not fit enough, I guess he thinks you should just die and get out of the way.

So…what is a life of diseases anyway?

Well, let me tell you something…

  • It’s terror never imagined and freedom never before possible.
  • It is the frantic pursuit of new medicines, continual visits to clinics, and seemingly endless waiting for test results.
  • It is the fierce obsession to find meaning, to have a constructive impact upon the flow of life.
  • It is chilling isolation, while appreciating the comfort of one’s very few true friends as never before.
  • It is living at one’s core yet being so distant from it that sometimes you don’t know if you’ll ever stumble your way home.
  • The condition of disease is waking up wet, bathed in sweat.
  • It is brutal intensity that challenges one’s own perceptions.
  • It is disorientation by the magnitude of emotional surges within.
  • It’s striking back, with courage and integrity.
  • It is diverse people coming together in urgent need, to share burdens.
  • It is finding love, living and struggling for a future with this love.
  • It is the sometimes-anguished look in your loved one’s face and wishing to calm their troubled mind, as they unshakably mask their fears.

Let me tell you something, further… Cancer, Lupus, Leukemia, Alzheimers, Fibromyalgia, Autism, Bleeding Disorders, AIDS, Liver Disease, Heart Disease, Chronic Severe Pain, Anxiety, Depression,… name it, whatever — Conditions of Life — are awesome!

Someday, cures will exist through new medicines — controversial gene therapy and stem cells — and these will be brought about because eventually too many communities, families, spouses, friends, and individuals will have experienced “feel of” and “feel for” through the overwhelming tidal wave of unrelenting life conditions, through the sense of crisis that lays bare the great potential of compassion within our society.

Perhaps Paracelsus uncovered a central truth ages ago:

The cure comes from medicine

and the art of medicine

originates in charity. 

Hence,

to be cured is not a work of Faith,

but one of sympathy. 

The true ground of medicine

is Love.

For me, the central being of Life is Love or its neglect, for the effort to live Life is worthwhile only if there is Love.

Pick up a text book studying the science of human biology; one rarely, if ever, encounters just the mere word, “Love,” much less indeed the idea that it affects human biology—that is to say, “Life.”

Were I to write a biology book, I doubt that I would devote every chapter or relate every nuance to the concept of “Love.” It’s not appropriate.

But, relationships, feelings, human contact, and Love do clearly impact biology, and humanity might be better served by reflecting the fact somewhere, at least, in our studies of physical biology.

Feelings (“feel of” and “feel for,” emotions, Love—the essences of Life) are facts, as much so as the fact that, “…we all begin life in the same basic way—as a cell in the womb of one’s mother, one cell from the uniting of two cells: one from Mom’s ovum and one from Dad’s sperm.”

What is done, absent of real feeling, to people—TO LIVES!—staggers me.

No doubt, some people feel similarly, but too many others will declare the concept ridiculous, immoral, bitter, cynical, disgusting, confused, and I should think, other less-tenable words. But to me this cannot be so, for everything I have and will state on this blog concludes in celebration of Life and its value… in a public citizenship! Even when exploring design, housing, cities, etc… all effect the condition of life for all.

To those who understand what’s said and to those who don’t, think of other lives and yourselves in terms of this quote from William Shakespeare’s The Tempest,

And my ending is despair

Unless I be reliev’d by prayer,

Which pierces so that it assaults

Mercy itself and frees all faults. 

As you from crimes would pardon’d be,

Let your indulgence set me free. 

As prescribed by T. H. White’s “Merlyn,” the best therapy for sadness is to learn something. Under circumstances often hostile or intimidating, and well experienced in the “trembling of the anatomies,” we must learn to rely on the strength of our minds and capacity to grasp the future as an open opportunity, a new chapter to our continuing story. We all participate in the telling of stories—some tragic, others more alluring, and many rambling. For, we all engage in the same endeavor, pursuing what we may recognize as distinctly, acceptably human.

Many citizens try to maintain just such a lofty pursuit but often feel dashed by the brash parochialism of a vocal few. Commentary from one reader many years ago regarding the AIDS-centered play, “Angles In America,” serves a fine example:

The theater world is clogged with such topical trash as “Angles In America,” [which] has nothing to do with art…[that is] imaginative, innovative, original, fun, or dramatic…We want theater that…intensifies our present experience and promotes joy in our everyday, sensory lives. 

[“Angles In America”] inflates a common newspaper issue to grotesque, pseudo-heroic proportions. It’s a dastardly attempt to make a classic play out of an over hyped, mass media concern like AIDS. 

And once more the Internet serves as a vector to sense the pulse of the nation’s brewing antagonism. In a past newsgroup, misc.health.aids, June 1996, a “highly paid survey research executive” wrote:

[Y]ou discussed the heritability of [bleeding disorders]—that some cases represent spontaneous mutations, in families with no history of hemophilia. I had not known this, [but my discussion of the] ethical focus had been on whether or not people known to carry the genes for hemophilia (that is, hemophiliacs and their daughters) ought to have children. I believe they should not have children.

A number of you argued that some hemophiliacs could be productive members of society. I would agree with that. However, it is also true that severe hemophiliacs are very expensive to society as a whole, in terms of both money and demands on the societal blood supply, and are not productive members of society.

My outlook is that humanity has room for improvement, not only culturally, but also in the physical characteristics of its members. We should wish for the people of the future to be stronger, healthier, and more intelligent than people of the present.

I suspect that this is the attitude of Georgia Congressman Rob Woodall, who supports elimination of all group and employer-based health care insurance and seeks that every individual should have to purchase their own individual policy on their own… and if you’ve got a pre-existing condition and cannot obtain your own insurance, he does not care. If you’re not fit enough, I guess he thinks you should just die and get out of the way.

Baser minds as this must encourage all citizens to share their stories, to tell our tales, and grow past callous disregard for that which is indeed acceptably human.

One should romance few illusions about the harm of which people are capable. Yet, also know that when resisting the world’s easy embrace of superstition, indifference, and ceaseless greed, the best course is an imaginative attempt to illuminate truth—not that the intents, thoughts, or declarations will restore discarded or devalued lives, but for the chance that they may arouse a moral perception to testimony.

Life’s wealth resides in the boundless variety of personal efforts to adapt and revitalize our selves, especially when challenged by the asperities of life.

Defects, damage, diseases, as such, may often stimulate inert capability, skill, potential, and evolution which might otherwise never be achieved or even conceived in their absence. Perhaps this is the true root of what we call “creative potential.”

The ravages of defect or disease may at times block one’s particular avenues, specific means for accomplishment. Yet, in so doing, they may force us to redirect paths, force upon us unexpected and magnificent discoveries and talents. This is the magic of diversity. Such uniqueness transforms the negative of handicap into a positive—an agility to compensate, adjust, and achieve. This is true success! 

Mutability, the human capacity for adaptation, should dominate our perceptions and life—our individual story.

Perhaps it is time to redefine our conceptions of the healthy and the diseased. It is time to demolish the rigid constructs of the “norm.” Most “defective” persons—whatever their particular problems, diseases, or life conditions—reach out to grasp life, not despite their complications but often because of them—or even driven by them.

In this regard, however, neither a singularly biological nor psychological nor moral-ethical-social vantage point is sufficient. We must grow to view life’s conditions and events from these varied perspectives at once. The effort is to to seek out truth.

I have often heard it said that the truth shall set men free, but truth is not about memorizing doctrine or poring over statistics, nor about political and celebrity “scandalgates” in our infotainment culture.

Truth is about the courage to deeply reconsider thoughts and observations, to take ownership of one’s history and impact within community and society, and to honestly express in one’s own voice.

Such an endeavor offers one a meaningful citizenship within a larger society. We have little else with which to build a better future.

From the abuses of a callous conservatism (which is not all conservatism) and the trends within families, we should defend what we find revealing and true while on our way toward life’s transition. We should embrace that which we have discovered for the hope of our eternal growth. Simply, this effort is about the zest of thought and the desire to understand.

This expedition for truth is, finally, a pursuit of “vibes” and feelings conveyed with a voice only one’s soul may hear.

____________________________________________________________________


Hemophiliacs Hope For Positive Changes With Health Care Insurance Reform

With stories like this, how can people possibly be against health care reform? Have they no compassion for fellow humans who were dealt a worse hand than themselves? 

Adapted From Article By Emily Tramte

tramte.2@osu.edu

Published: Thursday, June 3, 2010


From “The Lantern,” Ohio State’s Student Newspaper:

Stephen Kaes is athletic. His broad shoulders and strong legs could have made him a valuable player in football.

“Anything that has a ball in it, he always liked to do it,” said Leonard Kaes, Stephen’s father.

As a boy, soccer was his sport. But that ended with an incidental kick. Broken blood vessels, unable to clot, filled his calf with blood.

Even mild hemophiliacs experience painful hemorrhaging from everyday life experiences.

“They were contemplating if they would have to actually cut it open and bleed it out,” Stephen said.

Stephen has hemophilia A, a disorder in which the body doesn’t make enough of a protein needed to stop blood loss after injury.

“Some of the sports that my body type and mentality fit, I couldn’t do,” Stephen said.

Leonard said his son typically has about 6 to 8 percent of the protein, Factor VIII, that a normal person has.

“The way clotting works, it’s like a domino effect. Factor VIII is one of the dominoes,” Stephen said. Injuries resulting in minor bruises or cuts for most could have serious consequences for Stephen.

“It’s really serious if I get in a car crash, head injuries,” he said. “I had to play pretty low contact sports.”

Accidents can be expensive, too, and finding individual insurance coverage is difficult.

He and his father both paid attention to the debate about health care legislation. The results could greatly affect Stephen when he graduates from Ohio State in a year.

When Stephen decided to come to OSU, more than an hour from his Cincinnati home, his family considered his health and insurance portability.

During his second year at OSU, Stephen bumped his head on a building, and his father had to consider the price of his son’s health.

“One injury with Stephen could end up costing me my house,” Leonard said.

Leonard, a pharmacist, was concerned the injury was a concussion, the result of the brain moving inside the skull, and might cause brain damage.

“The problem with a head injury is it’s very difficult to see those and a bleed that doesn’t stop in the brain, you could be dead in 15 minutes,” Leonard said.

Stephen went to OSU’s Emergency Department to get treatment and a CT scan.

Hospital staff wanted to keep him for observation, but because his insurance is through the hospital his father works for, only emergency rooms are covered outside their network.

“A typical hospitalization is $2,500 a day,” Leonard said. “That will all be coming out of my pocket.”

Leonard said if the scan showed no bleed, he wanted to take Stephen to a hospital where his stay would be paid for. The staff agreed, but only if the test was negative.

If Stephen had a bleed in his brain, a normal car ride could cause serious damage, Leonard said.

“I’m sitting there looking at two or three days at an Ohio State hospital is somewhere between $5,000 and $10,000,” Leonard Kaes said. “How do I make that decision?”

Joint damage from hemophilia without adequate treatment. Don't want to fund "Obamacare" to provide health insurance to hemophiliacs? Then prepare to pay for them completely as they become disabled: add it up - $500,000 a year for medicine plus disability payments plus housing supplements for the rest of the hemophiliacs' life. That's what mean, short-term thinking costs, plus damage to a human life -- fellow citizens!

The Patient Protection and Affordable Care Act, signed by President Barack Obama on March 23, is supposed to make that decision easier. The three main goals of the legislation are to expand coverage to people without it, begin payment reform and change the way care is delivered, said Jerry Friedman, an adviser of health policy and director of government relations for the OSU Medical Center.

The act includes sections that could benefit those with chronic conditions and allows children to stay on their parent’s plan until age 26, which could affect 2.4 million young adults, according to the Department of Health and Human Services.

“The nice thing about young people is they’re usually healthy,” Dr. Michael Yutzy said.

Young people such as Stephen, with pre-existing conditions, have more trouble finding care. A pre-existing condition is any medical condition that someone knew about or had been treated for before acquiring a health insurance plan.

“I pretty much assumed I was going to have to go work for a big company that has that plan there for me already,” Stephen said. “I felt kind of limited, honestly, with what I could do because of that.”

The age 26 provision applies to plans that already offer coverage for dependents, according to the Department of Health and Human Services.

Stephen can take advantage of the option even if he doesn’t live with his parents, is not a dependent on their taxes or gets married.

About 1.8 million young adults are without insurance, according to the department. Some think they don’t need it, many are not able to afford it and starting jobs don’t always offer it.

“They will now be able to go in and see a physician to get their medications, to get whatever they need opposed to waiting until a simple cold becomes pneumonia and they end up at the hospital,” Friedman said.

Starting this year, people with pre-existing conditions who have been uninsured for six months will be eligible for high-risk pools.

They will receive insurance and subsidized premiums not available on the open market.

Andrew Matthews, 44, who has severe hemophilia A, said these provisions could help adults with chronic conditions.

Matthews blogs about hemophilia and speaks at conferences nationwide.

“I spend probably half a million dollars a year just to keep me ticking,” Matthews said.

High-risk pools have been available previously and these are only available until other provisions are effective in 2014.

“If you’re a hemophiliac and go through $600,000 worth of medication (per year) and most caps are only $2 million, you’ll run through those in two, three years,” Matthews said of high-risk plans.

Now, hemophiliacs should only need a few months.

Beginning in September, some insurance carriers will begin eliminating lifetime caps. This would allow people to continue using their current plans.

“We hope that they (lifetime caps) will be eliminated in all policies,” Matthews said. “I’ll believe it when I see it.”

Annual and lifetime caps will be eliminated by January 2014, according to legislation.

Exclusions based on pre-existing conditions will also be eliminated in 2014 for adults and have already been eliminated for children.

“Nothing will help me until 2014,” Matthews said. “What will help me is if I, Andy Matthews, can go out on my own as an individual and buy individual health insurance on the open market at the same price that you can buy it for.”

Compared to people like Matthews, Stephen Kaes is lucky to have a mild version of hemophilia.

Kaes uses a nasal spray, Stimate, to help his body release the little Factor VIII he does produce. By activating the protein, his body can stop minor bleeds. The medication costs about $600 to $650 per bottle.

This is one of the lower expenses the Kaes family incurs for Stephen’s condition.

For serious issues, he needs a Factor VIII replacement. One day for Stephen costs about $2,500. Depending on the seriousness of the injury, treatments could last three days to two weeks.

People with severe hemophilia A need synthetic Factor VIII on a regular basis.

Kaes is now in his third year at OSU.

“The older I get, the more I realize I have to make smarter decisions and try not cost a fortune,” he said.

When he is eventually forced off his parent’s insurance, most provisions of health care legislation will be active.

A hemophilic elbow bleed.

People such as Kaes and Matthews might no longer be limited to big companies and high premiums.

“The main thing is getting where anybody with a chronic condition can go out and buy insurance on the open market at a reasonable rate,” Matthews said. “That’s what will really help people.

“We want to be treated just like you do because you didn’t choose to be normal, and we didn’t choose to have hemophilia. That’s just the way it happened.”


Health Care Access Reform’s One-Year Anniversary

Today is the one-year anniversary of President Obama signing the Affordable Care Act into law.

THERE ARE NO OTHER RIGHTS OF CITIZENSHIP POSSIBLE  IF ONE DOES NOT HAVE GOOD HEALTH AND ACCESS TO CARE

When fully implemented, THE AFFORDABLE CARE ACT will cover 32 million Americans and begin to lower the rate of growth in health care spending.

To counter the conservative disinformation machine, health care advocacy groups nation-wide are sponsoring educational events to raise awareness about the law’s benefits and features, as well as efforts in implementing the measure to-date.

IMPLEMENTATION SUCCESS as a result of the law:

  • States received  $250 million in federal funding to strengthen their ability to review, revise, or reject unreasonable premium rate hikes.
  • Nearly four million seniors who fell into the Medicare Part D doughnut hole received federal assistance that helped them purchase medications
  • 150,000 seniors have undergone a free wellness exam this year
  • The government recovered $4 billion in fraud last year
  • The law provides resources to seek out waste, fraud and abuse in Medicare
  • New regulations seek to keep health insurers more accountable and increase access to coverage.

Moreover, starting this year, health care access is protected as insurance companies may no longer:

  • discriminate against children with pre-existing conditions,
  • drop coverage because of a simple mistake on an application,
  • institute lifetime caps,
  • limit choice of doctors,
  • charge more for emergency services obtained out of network, or
  • levy deductibles, co-payments or co-insurance for certain preventive benefits.

Also starting now:

  • more than a million young adults can stay on their parents’ plans until their 26th birthday
  • all citizens have the right to appeal insurer decisions to an independent third party.
  • four million small businesses have  access to $40 billion in tax credits
  • 12,400 Americans with pre-existing conditions are receiving coverage through temporary high-risk insurance pools that will provide coverage for sicker individuals until 2014.
  • citizens may compare available plan benefits, prices, and application denial rates at  HealthCare.gov.
  • and then in 2011, the website will include pricing and comparison information  for small businesses.

WHAT’S AHEAD TO PROTECT AMERICANS’ HEALTH ACCESS RIGHTS :

  • Starting in 2014, citizens and their families will have more options through state-based health care exchanges
  • Americans will be able to select new regulated plans that will offer a comprehensive set of benefits.
  • Under the law, if states fail to establish their own exchange, the federal government will build one for them — States like Louisiana, Florida, Georgia and Alaska have refused to build their own unique marketplaces and have instead suggested that they would allow the federal government to step in.
  • States that establish their own exchanges will determine the rules of their own markets (or partner with other states), determine which insurance companies may offer coverage, and define benefits rules.
  • Americans below 133 percent of the federal poverty line (FPL) will be able to enroll in an expanded Medicaid program.
  • Next year, the federal government  will issue defined regulations determining the flexibility of states to structure their health insurance exchanges.

MY BODY IS A CAGE

That Keeps Me From Dancing With The One I Love

My body is a cage

That keeps me from dancing

With the one I love

But my mind holds the key

 

My body is a cage

That keeps me from dancing

With the one I love

But my mind holds the key

 

I’m standing on a stage

Of fear and self-doubt

It’s a hollow play

But they’ll clap anyway

 

My body is a cage

That keeps me from dancing

With the one I love

But my mind holds the key

 

You’re standing next to me

My mind holds the key

 

I’m living in an age

That calls darkness light

Though my language is dead

Still the shapes fill my head

 

I’m living in an age

Whose name I don’t know

Though the fear keeps me moving

Still my heart beats so slow

 

My body is a cage

That keeps me from dancing

With the one I love

But my mind holds the key

 

You’re standing next to me

My mind holds the key

My body is a_

 

My body is a cage

We take what we’re given

Just because you’ve forgotten

Doesn’t mean you’re forgiven

 

I’m living in an age

That screams my name at night

But when I get to the doorway

There’s no one in sight

 

My body is a cage

That keeps me from dancing

With the one I love

But my mind holds the key

 

You’re standing next to me

My mind holds the key

 

Set my spirit free

Set my spirit free

Set my body free

Set my body free

 

Set my spirit free

Set my body free


RALLY TO RESTORE SANITY AND/OR FEAR Application

Get The Free Rally App on Your iPhone, iTouch and iPad

Before you head to D.C. for the Rally of a lifetime — or at least a weekend — download the official Jon Stewart and Stephen Colbert-approved Rally to Restore Sanity and/or Fear application today for free in the iPhone App Store.

View maps, upload photos, share comments, and check in on Foursquare to earn one-of-a-kind badges! WooHoo!

 

Android phone lovers, your app is on its way, as well!


Obama Orders Hospitals To Grant Same-Sex Couples Visitation Rights

FINALLY, A LIBERAL PRESIDENT WITH BALLS TO MOVE THIS NATION FORWARD!

THANK YOU, PRESIDENT OBAMA!

President Obama signed an order Thursday night requiring hospitals to ♦ allow gays and lesbians to have non-family visitors and to ♦ grant their partners medical power of attorney.

The president ordered the Department of Health and Human Services to prohibit discrimination in hospital visitation and respect patients’ choices about who may make critical health-care decisions for them. The presidential order is scheduled to be made public Friday morning.

The new rule will affect any hospital that receives Medicare or Medicaid funding — the vast majority of hospitals across the nation.

Activists celebrate Obama’s directive; many of us have been working for this change for years.

Critics are in a tougher spot: Basically, it’s hard to condemn the decision without sounding heartless. But that won’t stop some conservatives and christian leaders:

Peter S. Sprigg of the Family Research Council said the President’s order, “undermines the definition of marriage” and “clearly constitutes pandering to a radical special interest group.”

You know, by conservatives acting so viciously and monstrously as the “Party of No,” Tea Party radicals, the Republican Party, and Neo-Conservatives have taught Obama that there is no political middle ground, nor working out compromise any longer and no need to even try.

It’s clear now that Barack decided, “If I’m a one-term president because I am preventing a Depression and improving the health and lives of citizens, then so be it… I might as well change everything possible that I can and shove this declining nation forward with great force!”

Thank you, Mr. President for letting me know that at least someone in power wants to recognize me as a legitimate US citizen with all the rights accorded other citizens.

“The General Accounting Office has identified 1,138 instances in federal law where marriage is important,” one gay rights activist told the Washington Post. “We’ve knocked off one of them.”

The most important news and commentary to read right now. – The Slatest – Slate Magazine.

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Steve Walker: Artist Of A Human Dignity

I do not know, and have never met, the artist Steve Walker. Yet, he has elicited a familiarity and sentimentality in his paintings at once startling and eerie — as if I could know his experiences and he, mine.

I’ve chosen a few of his pieces particularly speaking to an “aha” moment — you know, when you see something quickly and turn back to it in awe, silently saying, “Oh my God”… “I’ve been there”… “That was us!”… “That was me”… “That is me”… “I remember that loneliness”… “I still feel that sense of ‘the missing'”… “I remember that dread and sadness”… “Oh, THAT was a wonderful experience”… or even… “I can feel him”…

The point of the matter with his work, for me, seems to be Walker’s ability to tap into himself, and me even, as a gay man, but also an ability to tap into the humanness within us all, whether gay or straight, or anything between. Steve’s paintings are about us all as humans…

From Steve Walker’s website introduction:

I remember feeling a strange sense of elation upon having survived childhood, a rural environment, education, and the knowledge that my sexual orientation (which never felt a mystery or problem to me, personally) would forever cause some people who had never met me and would never know me to hate me and others like me.

Life goes on.

Within months of feeling this newfound sense of peace, a dinner conversation introduced me to a new word that would forever change my life and the lives of so many others: AIDS.

Life would never be the same again.

And… the importance of life to me (my own and others’) would be changed forever. I felt surrounded by a plague that stigmatized gay people to a degree far exceeding that which we had already suffered. An overwhelming and paralyzing sense of fear, anger, sadness, and loss enveloped my life and the lives of so many others.

Being an actor suddenly meant very little to me. I felt powerless. I could not stop the dying or find a cure for the insidious disease. Maybe — just maybe, though — I could help find a cure for the hatred, fear, and ignorance that surrounded so many young men around the world as they lay in hospital beds and drew the last breaths of unfinished lives. I started to paint.

Slowly, sporadically, and privately, I taught myself to paint and began creating paintings about the experiences and emotions that all human beings share. Themes of love, attraction, hope, despair, loneliness, the beauty of sky, the perfection of a horizon, the power of a person touching another were given life on pieces of canvas. I created images that came from a place of truth. I tried to make sense of and give order to a world that seemed to know neither.

It simply never occurred to me to paint about themes in any other context than that of my own life as a person who happens to be gay. I had never had a problem relating to work created by heterosexuals in a heterosexual context. Why should I create paintings whose context was anything other than the truth of my life as a gay man?

I started showing my early paintings in bars and restaurants in the gay neighborhood of Toronto. From there things moved very quickly. Within a short time, I exhibited and sold my work in high-end, mainstream galleries throughout North America, and reproductions of my work throughout the world.

I see my work as a documentation, an interpretation, a crystallization of singular moments rendered in line, color, light, shadow, using a hundred brushes, a thousand colors, and a million brushstrokes. I strive to make people stop — if only for a moment — to think and actually feel something human… and humane. My paintings contain as many questions as answers.

I hope that in its silence the body of my work has given a voice to my life, the lives of others, and in doing so, the dignity of all people.

Click on a picture to view clickable slideshow and again to enlarge the image