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THE FRIENDS FOR LIFE NEWSLETTER VOLUME 24
FRIENDS FOR LIFE AT THE CHURCH OF THE GOOD SHEPHERD
1576 Palisades Ave., Fort Lee, N.J._201 461 7260
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THE WAITING ROOM
Just recently I accompanied my partner to a major New York hospital for an outpatient procedure to have a kidney stone laser
blasted. A fairly easy ordeal and I can say that because I’ve had it done twice, but none-the-less an ordeal because any time one goes into a
hospital it’s always an ordeal, even if you are a visitor.
The procedure would take about 2 hours from prep to recovery so it was off to the waiting room where family and friends sit and
wait. I was prepared for the long haul fully equipped with a book, some magazines, my journal, lunch and my I-pod. I had enough to keep
me busy for the birth of quintuplets. Thankfully that was not the case.
Entering the waiting room I was taken back by the number of people in the room. It was a fairly large room and it was ninety
percent full. I found myself a comfortable chair and inserted my I-pod ear buds and got busy, keeping busy. I wrote in my journal, ate my
lunch, browsed through my magazines and after a half hour I started getting bored. I took out my book but somehow could not concentrate
on the words. My eyes keep catching the flurry of activity of the waiting room.
Putting the book down I left the I-pod ear buds intact so I would not have to make any small talk with the other visitors but I
found myself mesmerized by the scenarios all around me. I lowered the volume on the I-pod so I could hear what was going on around me
but pretended to be listening to music. Doctors and nurses came in and out with updates on the various visitors’ patients. I noticed the
expressions of tenseness on their faces as the doctors approached the family members and watch those expressions melt away with relief as
they were given good news. I was relieved not to have to witness an uncomfortable situation of bad news.
More and more I got involved with the different cases around me. There was a family in an alcove behind me that was there
since the night before and their family member was at the tail end of a 12-hour surgery. The family in front of me was waiting on the
outcome of brain surgery on their mother. As I pretended not to be listening to them, I was careful not to express any emotion on my face. I
noticed that many of the people used this time to keep busy. Some read. One lady was knitting and another was doing crossword puzzles.
Some folks were taking on their cell phones and others just paced back and forth.
Then it dawned on me that the whole room was filled with anxiety and anticipation of various degrees. I tried not to let my own
anxiety take over my thinking but it was hard not to get swept up in this emotionally charged room. This was not like being in the waiting
room at a bus terminal; this was General Hospital in real life.
As I was observing everything around me and watching the various plots unfold, it occurred to me that this room I was sitting in
is much like life itself. I know that sounds very philosophical, even for me, but life is very much a waiting game. We are always waiting
for one thing or another to happen. During the course of a day we are constantly waiting -- waiting for lunchtime to come, waiting on a
phone call, waiting on line to check out at the food store, waiting at a traffic stop, waiting to wait.
What we do with that time we are waiting is what makes the difference in how we deal with life. Are we impatient? Are we
antsy or calm and collected? Are we finger tapping, gum chewing, foot swinging or doing any number of other time-killing antics? Or are
we in the moment?
Now there is a concept that many of us never achieve. We are normally too wrapped up in our egos and our mind’s endless
thinking spiral to stop and just observe what is going on around us while we wait for life to happen. What we are missing is what is
happening at the moment. We can never bring back the past moments and the future moments never happen but we are missing the present
moments because we are too consumed with past and future thinking. The thing that makes us different from the animal kingdom, the
cognitive process, sometimes is our biggest drawback.
For the past year I have been working on being in the present moment, on being in the “Now”. At first this was rather hard for
me to wrap my mind around. I thought that “thinking” was being in the moment until I stopped to think about what it was I was thinking
about. Are you still with me? I just confused myself.
Given information about “thinking” and with the help of practicing mindfulness through meditation, I have been able to harness
some of my whirlwind thinking and funnel it down to what is going on right here and right now. It has also relieved much of the anxiety
my mind conjured up with thinking about unsolvable scenarios.
There is a lesson that can be learned from observing the children. Notice how they wait. Infants and toddlers have not a care in
the world. They don’t even know that they are waiting for anything other than being fed. Their waiting time is unobstructed with any
thoughts at all. Children a little bit older have a fidgety waiting period. While not in deep thought of “past or future” thinking they are
somewhat aware that they are waiting for something and get a bit antsy and more animated. You can see it on their faces that something is
running through their minds. It’s not until you observe the adults that you can really see the angst on the face that gives away the thoughts
in their heads. If we can learn to be like the children in our moments of waiting and utilize that time for something other than “stinking
thinking” this time can be a better and more rewarding time in our life.
Which brings me back to the waiting room. My partner’s procedure went well and most of the families in the waiting room were
greeted with good news also. The waiting room will always remind me that in life, we are all waiting. Waiting for a variety of events to
unfold but it will be the way we wait that will make the difference, in how we accept what we are waiting for.
A Doctor, a Mutation and a Potential Cure for AIDS
A Bone Marrow Transplant to Treat a Leukemia Patient Also Gives Him Virus-Resistant Cell By MARK SCHOOFS
The startling case of an AIDS patient who underwent a bone marrow transplant to treat leukemia is stirring new hope that gene-
therapy strategies on the far edges of AIDS research might someday cure the disease.
The patient, a 42-year-old American living in Berlin, is still recovering from his leukemia therapy, but he appears to have
won his battle with AIDS. Doctors have not been able to detect the virus in his blood for more than 600 days, despite his having ceased all
conventional AIDS medication. Normally when a patient stops taking AIDS drugs, the virus stampedes through the body within weeks, or
days.
The breakthrough appears to be that Dr. Hütter, a soft-spoken hematologist who isn't an AIDS specialist, deliberately replaced the patient's
bone marrow cells with those from a donor who has a naturally occurring genetic mutation that renders his cells immune to almost all strains
of HIV, the virus that causes AIDS.
The development suggests a potential new therapeutic avenue and comes as the search for a cure has adopted new urgency.
Many fear that current AIDS drugs aren't sustainable. Known as antiretrovirals, the medications prevent the virus from replicating but must be
taken every day for life and are expensive for poor countries where the disease runs rampant. Last year, AIDS killed two million people; 2.7
million more contracted the virus, so treatment costs will keep ballooning.
While cautioning that the Berlin case could be a fluke, David Baltimore, who won a Nobel prize for his research on tumor
viruses, deemed it "a very good sign" and a virtual "proof of principle" for gene-therapy approaches. Dr. Baltimore and his colleague,
University of California at Los Angeles researcher Irvin Chen, have developed a gene therapy strategy against HIV that works in a similar
way to the Berlin case. Drs. Baltimore and Chen have formed a private company to develop the therapy.
Back in 1996, when "cocktails" of antiretroviral drugs were proved effective, some researchers proposed that all cells
harboring HIV might eventually die off, leading to eradication of HIV from the body -- in short, a cure. Those hopes foundered on the
discovery that HIV, which integrates itself into a patient's own DNA, hides in so-called "sanctuary cells," where it lies dormant yet remains
capable of reigniting an infection.
But that same year, researchers discovered that some gay men astonishingly remained uninfected despite engaging in very
risky sex with as many as hundreds of partners. These men had inherited a mutation from both their parents that made them virtually immune
to HIV.
The mutation prevents a molecule called CCR5 from appearing on the surface of cells. CCR5 acts as a kind of door for the
virus. Since most HIV strains must bind to CCR5 to enter cells, the mutation bars the virus from entering. A new AIDS drug, Selzentry, made
by Pfizer Inc., doesn't attack HIV itself but works by blocking CCR5.
About 1% of Europeans, and even more in northern Europe, inherit the CCR5 mutation from both parents. People of
African, Asian and South American descent almost never carry it.
Dr. Hütter, 39, remembered this research when his American leukemia patient failed first-line chemotherapy in 2006. He
was treating the patient at Berlin's Charité Medical University, the same institution where German physician Robert Koch performed some of
his groundbreaking research on infectious diseases in the 19th century. Dr. Hütter scoured research on CCR5 and consulted with his
superiors.
Finally, he recommended standard second-line treatment: a bone marrow transplant -- but from a donor who had inherited
the CCR5 mutation from both parents. Bone marrow is where immune-system cells are generated, so transplanting mutant bone-marrow cells
would render the patient immune to HIV into perpetuity, at least in theory.
There were a total of 80 compatible blood donors living in Germany. Luckily, on the 61st sample he tested, Dr. Hütter's
colleague Daniel Nowak found one with the mutation from both parents.
To prepare for the transplant, Dr. Hütter first administered a standard regimen of powerful drugs and radiation to kill the
patient's own bone marrow cells and many immune-system cells. This procedure, lethal to many cells that harbor HIV, may have helped the
treatment succeed.
The transplant specialists ordered the patient to stop taking his AIDS drugs when they transfused the donor cells, because
they feared the powerful drugs might undermine the cells' ability to survive in their new host. They planned to resume the drugs once HIV re-
emerged in the blood.
But it never did. Nearly two years later, standard tests haven't detected virus in his blood, or in the brain and rectal tissues
where it often hides.
The case was presented to scientists earlier this year at the Conference on Retroviruses and Opportunistic Infections. In
September, the nonprofit Foundation for AIDS Research, or amFAR, convened a small scientific meeting on the case. Most researchers there
believed some HIV still lurks in the patient but that it can't ignite a raging infection, most likely because its target cells are invulnerable
mutants. The scientists agreed that the patient is "functionally cured."
Caveats are legion. If enough time passes, the extraordinarily protean HIV might evolve to overcome the mutant cells'
invulnerability. Blocking CCR5 might have side effects: A study suggests that people with the mutation are more likely to die from West Nile
virus. Most worrisome: The transplant treatment itself, given only to late-stage cancer patients, kills up to 30% of patients. While scientists
are drawing up research protocols to try this approach on other leukemia and lymphoma patients, they know it will never be widely used to
treat AIDS because of the mortality risk.
There is a potentially safer alternative: Re-engineering a patient's own cells through gene therapy. Due to some disastrous
failures, gene therapy now "has a bad name," says Dr. Baltimore. In 1999, an 18-year-old patient died in a gene therapy trial. Even one of
gene therapy's greatest successes -- curing children of the inherited "bubble boy" disease -- came at the high price of causing some patients to
develop leukemia.
Gene therapy also faces daunting technical challenges. For example, the therapeutic genes are carried to cells by re-
engineered viruses, and they must be made perfectly safe. Also, most gene therapy currently works by removing cells, genetically modifying
them out of the body, then transfusing them back in -- a complicated procedure that would prove too expensive for the developing world. Dr.
Baltimore and others are working on therapeutic viruses they could inject into a patient as easily as a flu vaccine. But, he says, "we're a long
way from that."
Expecting that gene therapy will eventually play a major role in medicine, several research groups are testing different
approaches for AIDS. At City of Hope cancer center in Duarte, Calif., John Rossi and colleagues actually use HIV itself, genetically
engineered to be harmless, to deliver to patients' white blood cells three genes: one that inactivates CCR5 and two others that disable HIV. He
has already completed the procedure on four patients and may perform it on another.
One big hurdle: doctors can't yet genetically modify all target cells. In theory, HIV would kill off the susceptible ones and, a
victim of its own grim success, be left only with the genetically engineered cells that it can't infect. But so far that's just theory. All Dr. Rossi's
patients remain on standard AIDS drugs, so it isn't yet known what would happen if they stopped taking them.
In 1989, Dr. Rossi had a case eerily similar to the one in Berlin. A 41-year-old patient with AIDS and lymphoma underwent
radiation and drug therapy to ablate his bone marrow and received new cells from a donor. It is not known if those cells had the protective
CCR5 mutation, because its relation to HIV hadn't been discovered yet. But after the transplant, HIV disappeared from the patient's blood.
The patient died of his cancer 47 days after the procedure. Autopsy tests from eight organs and the tumor revealed no HIV. . NOVEMBER 7,
2008
Write to Mark Schoofs at mark.schoofs@wsj.com
Corrections & Amplifications
The Foundation for AIDS Research, which uses the acronym amFAR, is the name of the nonprofit group cited in this article.
The name of the group was incorrectly given as the American Foundation for AIDS Research
After the Storm
Trial Begins for HIV Gene Therapy
By Aaron Rowe February 03, 2009 | 7:00:00 AMCategories: Biotech, Medicine & Medical Procedures
Gene therapy that could immunize people against the most common type of HIV is ready to be tested on humans.
Recruiting for the trial began Tuesday, and the first people to receive the experimental treatment will be HIV patients with
drug-resistance problems. "We do have good treatments for HIV. That has been one of the most successful stories of the last 20 years in
medicine," said Pablo Tebas, an infectious disease expert at the University of Pennsylvania.
"However, over time, if the medications are not taken properly, individuals develop resistance to the HIV treatments, so they
tend to have more limited therapeutic options."
Since the discovery that a small portion of people who are exposed to HIV do not get infected, scientists have been working to
discover the secret to those people's resistance and how to make others resistant as well.
It turns out that most people have a gene called CCR5, which makes them vulnerable to HIV infections. The naturally
resistant people have mutant CCR5 genes that inhibit HIV. Previously, scientists found that by cutting the CCR5 gene out of white blood
cells involved in the immune response known as T-cells, they could protect a tube full of human cells from the virus. The gene editing
technique relies on proteins called zinc finger nucleases that can delete any gene from a living cell. In theory, zinc finger nucleases could
give that immunity to anyone.
The procedure is simple: Take some healthy T-cells out of an HIV patient, clip out their CCR5 genes, grow more of these
clipped T-cells in a dish, and then put them back in the patient.
"In this first study we will re-infuse approximately 10 billion of these cells back into the participants, and we will see if it is
safe and if those cells inhibit HIV replication in vivo," said Tebas. "We know they do in the test tube."
After the Storm
There is something mystical about the clearing sky after a rainstorm. It’s as if the lens of your mind’s eye is wiped
clear of soot and debris. The colors of the sky are paletted like a Maxfield Parrish painting with lush iridescent shades of blue and magenta.
The air is fresh and absent of any aroma filling your sinuses with an absolute clarity of breath. The cool crisp air fills the lungs as
if it were the first breath of life, a rebirth if you will.
The visual beauty of the cloud formations, swirling and transforming with every moment is a confirmation of nature’s glory.
This is an awesome display of majesty leaving the beholder limp with wonderment. No man could ever create such beauty. No man could
ever dare to try.
Parting slightly to allow the sun to shine through, the clouds act as a filter of the light rays that bathe the earth with warmth and
comfort. The brilliance of the sun’s light, almost too blinding to witness, bearing down and transfixing the gaze of your eyes, compelling
you to stare into its powerful energy.
This must be the light we shall see when it is our time to pass through. If that is the beauty before us then there could be nothing
other than serenity to embrace us when that time unfolds. How can heaven be more beautiful than what we have before us now?
Rainstorms washing clear the earth of pollution and our souls of built up webs of confusion, restoring our confidence that life,
precious and omnipotent, can never be taken for granted, humbling the residents of the planet with the knowledge that they too are a part of
something much greater than they could ever comprehend. A mystery as old as the universe, taunting man with the answer to which will
never be revealed, for to reveal the treasure of the question, would be to betray the meaning of life.
Was it just a rainstorm? Was the clearing just a new day? Or am I just in this moment seeing it for the first time?
FRIENDS FOR LIFE Staff
The Rev. Allison Moore- Ph.D-Executive Director
Mr. Nelson Rivera –Program Director
Mr. Howie Clark -Driver
Mr. Bill Murray- Lifeline Editor
Ms. Ellen Risbarg- Contributing Editor
FRIENDS FOR LIFE Funders Include:
Ryan White Care Act
PNC Bank
M.A.C. Aids Fund
GlaxoSmithKline
Roche Pharmaceutical
Broadway Cares/ Equity Fights AIDS
Dr. Mary Rose McInerney
Diocese of Newark
The Imperial Court of New York
Target Stores- Edgewater,N.J.
