Volume 20, Number 2
August 2011
Announcing the 5th Annual CARES Conference
Another Year of Progress Through Research Please Register Now!!
The Glaucoma Service Foundation to Prevent Blindness is hosting
the 5th Annual Glaucoma Service Foundation CARES Conference on
Saturday, October 15th, 2011, at Wills Eye Institute from 8:30
AM to 2:30 PM. Since January 2007, the Glaucoma Service Foundation
to Prevent Blindness at the Wills Eye Institute has held a day
long conference called the “CARES Conference.” CARES
stands for “Committed to Awareness through Research, Education,
and Support.” This is a patient directed educational conference
about glaucoma. Last year, over 170 patients and their families
from around the United States (primarily Pennsylvania, New Jersey,
Delaware, and New York) attended this conference at Wills Eye
Institute.
The event includes lectures by Wills Eye glaucoma physicians.
Free screenings for glaucoma are offered and encouraged. In addition,
educational resources and information are available at the CARES
Conference to patients living with glaucoma.
Representatives from pharmaceutical companies with patient assistance
programs, Low Vision Services, Associated Services for the Blind,
and the Glaucoma Research Center will be on hand. Guest speakers
include Vivian Werner, Dr. Scott Edmonds, and Jule Ann Lieberman.
The conference begins with a continental breakfast. We look forward
to seeing you there!
Some of the exciting lectures that will be presented:
- Patients As Knights, Knaves Or Pawns – Dr. George Spaeth
- Refraction, Magnification And Vision Rehabilitation In Advanced
Glaucoma – Dr. Scott Edmonds
- Conquering Life Challenges Posed By Vision Loss – Jule
Ann Lieberman, EZ2C Foundation
- Understanding Risk:Weighing Risk Factors And Treatment Risks
In Your Healthcare Decisions – Dr. Jonathan Myers
- What Can I Do To Help (Or Hurt) My Glaucoma? - Dr. Jay Katz
Other speakers include:
- Dr. Scott Fudemberg
- Dr. Michael Pro
- Dr. Geoffrey Schwartz
- Dr. Anand Mantravadi
A special thanks to the Robison D. Harley Fund for Glaucoma
Education and Research for sponsoring this event.
Thank you to Allergan for their continued support.
Register by e-mailing:
Rita Stern (rstern@willseye.org
or Rob Kump (rkump@willseye.org)
Please call Rob Kump at (215) 928- 3190.
You will need to provide your name, address, phone number, and
number of guests.
Register
online by clicking here.
Website:
Click here for
CARES information on registration, parking, accommodations, etc.
There will be no charge to attend but space is limited,
so please register NOW!
Denial: Bane or Boon? George L.
Spaeth, M.D.
What are the characteristics that distinguish
humans from other plants and animals? Intelligence? Learning skills?
Language? Ability to create beautiful works of art? The capacity
to solve problems? Courage? Emotional sensitivity? If we are realistic
and honest, we can find without too much difficulty examples where
other species excel us in every one of these categories. Humans
are certainly not more courageous than are the mothers of many
species; those mothers are well aware of what constitutes life-threatening
situations, and would immediately avoid those to save their own
lives under ordinary circumstances, but are both creative and
courageous when they choose to protect their young. Whales are
much more articulate than many teenagers. No human could spin
a spider web, and numerous studies have demonstrated that dogs
are often far more sensitive to emotions than are people. There
is one area in which humans are the unquestioned champions. No
species, no individual in any species, can match the astounding
ability to do what may be uniquely human, specifically, deny.
This remarkable capacity to deny is appropriate for those interested
in health to think about deeply, because denial, in different
forms, is probably the major reason why people with many illnesses
become worse. That comment may be greeted with doubt or even derision
(especially by those most adept at denial). So, let’s be
specific. Glaucoma, that is optic nerve damage caused by pressure
in the eye higher than the eye can tolerate, has its initiation
in many sources, commonly the genetic makeup of the individual.
It is well known that glaucoma is more likely to occur in individuals
with certain genetic backgrounds and that it is hereditary. Yet,
doctors do not insist that the family members of those patients
for whom they are caring be tested for glaucoma. Were they truly
interested in this, they would look at the optic discs of the
patient’s brother, sister, daughter or son when they are
in the office. But physicians deny the importance of finding glaucoma
in the relatives, and therefore fail to act. It is not just physicians
who deny. Children bring their blind parents into the office to
get checked for their glaucoma, but the children do not get themselves
checked, even when the doctor points out that they should be.
Denial.
Glaucoma can be caused by various types of treatments, such as
cortisone products taken orally, nasally or in the form of eye
drops. Doctors surely know this, or if they do not, they are denying
their responsibility to understand the side effects of medications
they are ordering or using. Yet doctors, including ophthalmologists,
not only order corticosteroids without having their patients checked
to see whether the medications are causing pressure rises, they
also use those drugs themselves; physicians are among the most
common individuals to develop corticosteroid-induced glaucoma!
Denial.
Another reason why glaucoma develops is because of trauma to the
eye. This may cause glaucoma immediately or 20 years later. The
immediate form is usually recognized and often properly handled.
But physicians either frequently forget, or patients unfortunately
ignore the glaucoma that occurs in the traumatized eye or even
in the untraumatized eye years later. As a result, the intraocular
pressure elevation that proceeds the late damage is not detected
until irreversible visual loss has occurred. Denial.
More specifically, in the United States more than half of those
who have glaucoma never get diagnosed.
Why?
1) Doctors deny their responsibility to check
for diseases which cause preventable damage, such as high blood
pressure, diabetes, depression, and glaucoma.
2) The government denies its responsibility to develop a healthcare
system that educates and that creates an environment that helps
individuals care for themselves by educating and by providing
necessary assistance, especially for those unable to afford care
themselves.
3) Finally, and most importantly, people fail to get diagnosed
because they deny their responsibility to care for themselves.
Unfortunately, truly tragically, there is almost no constituency
fighting to improve self-care. Why is there no constituency fighting
to improve self-care? Because the only group who stands to benefit
from improved self-care is the government, and the government
is comprised of representatives who are either too uninterested
or too conflicted to see that and act on it. Doctors and the medical
profession have never been interested in selfcare. In fact, when
graduating physicians recite the Hippocratic Oath, they swear
they will not share their knowledge with individuals who are not
physicians. Why should physicians be interested in self-care?
After all, if everybody was well, how could physicians support
themselves? But that is just another form of denial. Because,
in fact, doctors would be utilized to do what they should be doing,
which is care for patients who have conditions that do not respond
to selfcare, and work to improve the health or perform corrective
measures for those inevitable situations in which doctor services
are necessary, such as broken bones, carpal tunnel syndrome, cataracts,
and the illnesses which cannot be avoided no matter how well one
cares for one’s self. Hospitals are uninterested in selfcare.
Pharmaceutical companies have a logical interest in educating
patients how to care for themselves, and many are starting to
do that. But those who have the most to gain are the ones who
are most resistant, specifically, the patients themselves. Patients
often do not take responsibility for their own health. Somewhere
between one-third and one-half of those who have chronic diseases
which can be benefited by treatments do not do what is necessary
for them to do in order to preserve their health, such as using
drops for glaucoma, controlling one’s weight with diabetes,
decreasing salt intake with hypertension, etc.
That “30-50” percent figure is a very conservative
estimate. With certain conditions, such as being overweight, those
who do not care for themselves is closer to 99 percent. There
may be a handful of people in the United States who are overweight
because of a reason other than eating too much, but it is not
more than a handful. So the epidemic of obesity in the United
States is self-created. I feel a responsibility to say something
to patients who are seriously overweight, because I hope that
some encouragement to lose weight may help them accomplish that.
Yet, virtually always the individuals respond that they are not
overweight because of how they eat. This is a painful form of
denial regarding health, because it is so self-destructive and
so unnecessary. Here the individual has total control over the
situation and yet fails to act appropriately. Not only do many
such individuals challenge the thought that they are overweight
because they eat more than they need, but they are offended and
even get angry when that idea is raised.
Perhaps the most tragic misconception about denial is that it
has survival value. It does not. Seeing things realistically allows
one to take appropriate steps. Some reading this may have seen
the movie, “It’s a Beautiful Life,” about a
man and his son who are in a concentration camp in Germany in
the 2nd World War. The father recognizes the horror of the situation
and creates a world which makes it possible for his son to survive.
That is not denial. The father bases his creation on a profound
understanding of reality and takes brilliant adaptive steps to
deal with that reality, not with a fantasy. The result is a happy
one for both the father and the son. No, the idea that denial
is necessary for survival may be the most vicious form of denial.
Denial is no boon. It is an unmitigated bane. Not recognizing
this is but another manifestation of this terribly tragic practice,
which appears to be uniquely human.
 Letter
from our President
“To be or not to be.” We are all
familiar with the quote. I have another saying that is "To
see or not to see." We are concerned with your visual health.
Our vision is to make an attempt to help as many people as possible
through our education and research to cure glaucoma.
We need your financial support to continue our efforts in researching
glaucoma. With all of the cutbacks in healthcare, we must depend
on each other's generosity. Please help us by sending us a donation
or consider the Glaucoma Service Foundation as part of your estate
planning.
As you can clearly see, we have cut down on the frequency of the
Searchlight from quarterly to biannually because we don't have
the funds to support this important endeavor. Please help us publish
the Searchlight quarterly by sending in your tax deductible donation
today.
Respectfully Yours
Dr. Zeff Lazinger
President
Farewell to our 2010/2011 Clinical
Fellows
Congratulations to the graduating clinical fellows of 2011, Dr.
Kathryn B. Freidl, Dr. Robert J. Goulet, III, and Dr. Shelly R.
Gupta. A ceremony was held on Friday, June 24, for all of the
graduating fellows and residents of Wills Eye Institute. We wish
all of them the best, but for those of us here at the Glaucoma
Service Foundation, Kathryn, Robert, and Shelly are the “Class
of 2011.” We have gotten to know them very well since their
office is right across the hall from the Foundation. They are
wonderful and caring people who we are sure will continue to have
successful careers as have so many Wills glaucoma fellows before
them. Dr. Freidl will be working with Florida Eye Associates in
Jacksonville, Florida, while Dr. Goulet will be joining the Boling
Vision Group in Elkhart, Indiana. Dr. Gupta will be moving back
to her home state of Ohio to work with The Ohio State University
in Columbus. Dr. Freidl says of her time spent at Wills ”When
I started here Dr. Spaeth told the three of us that his goal was
to make our year at Wills the best year of our lives. I thought
he was joking, but it really has been the best year of my life.
Between the training, the people, and the friends I’ve made
this has been a wonderful experience.”
The ophthalmic technicians who have worked closely with the clinical
fellows over the past year have nothing but positive things to
say about them. Effie Birbilis described them as “dependable
team players, very nice to work with.” Ro Verlengia said
“It was a good year, they were great with follow up and
we will miss them.”
The Glaucoma Service Foundation wishes Kathryn, Robert, and Shelly
all the best in their future careers.
From left - Dr. L. Jay Katz, Dr. Robert Goulet, Dr. Shelly Gupta,
Dr. Kathryn Freidl, and
Dr. George Spaeth.
Photo by Roger Barone.
In the Research Corner
By Sheryl S. Wizov
When visiting your glaucoma doctor, you could
be approached to participate in a research study. The Research
Center and your doctor have determined that you may be a good
candidate for a specific study. A staff member will explain the
study to you in detail. If you are in agreement, your written
permission will be obtained. This consent form must first be signed
by you, witnessed by the staff and signed by a physician before
the study can begin. A copy of the signed consent form will be
provided for your records.
A major reason why patients do not participate
in research studies is because they have concerns about the risks
of those studies. There are other reasons, of course, such as
the time that is involved, as well as the inconvenience to the
patient. One of the major reasons I wanted to write this article
is to put the issue of risks into better perspective. I have been
involved in clinical research trials for 22 years, and I feel
comfortable on commenting on this important matter. Some studies
that were performed many years ago were done without obtaining
approval from a group dedicated to protecting patients. Some were
done without adequate regard for the human research subjects,
and some without adequate continuing oversight. Some studies were
even done without the participant’s knowledge. In other
words, there was no opportunity for those participants to understand
the study and to weigh what might be risks and benefits. This
is not the case today. Stringent rules from different sources
protect the health and safety of human subjects by regulating
the way scientists and physicians may conduct research. These
regulations assure that we are all concerned about the health
and safety of every participant.
Before a study begins, a detailed protocol is submitted to a local
or institutional review board. Our studies are approved and monitored
by the Wills Eye Institute Institutional Review Board (IRB). This
Board is comprised of a lawyer, a member of the clergy, medical
experts and members of the community. The Board’s responsibility
is to evaluate research protocols and determine if the benefits
to patients and society outweigh the risks according to Federal
Regulations. The IRB can approve, reject or recommend changes
to the protocols submitted. The IRB requires annual monitoring
of each study from start to finish and must approve any changes
to the protocol that take place along the way.
Another level of oversight exists with the Food and Drug Administration
(FDA) of the Federal Government. When new drugs or new devices
are being tested, approval first goes through the FDA and then
local or institutional IRB approval must also be obtained. The
FDA can also approve, reject or recommend changes to the design
of the study.
Here are a few helpful hints when measuring a
study’s level of risk. Surveys and questionnaires pose no
risk to participants but still require IRB approval. The responses
to studies like these can make a huge impact on such issues as
the way patients receive treatment, and how to better educate
patients, just to name a few. Validating or comparing different
testing strategies also poses little to no risk to participants,
but provides vital information about the value of the tests that
the patients take in clinical care.
Low risk studies may include having your eye pressure checked
or using an already FDA approved eye drop, or providing blood
samples. The risks may include minor irritation from having your
eye pressure checked or from the new drop or a bruise and soreness
at the site where blood was drawn.
Moderate risk studies may include trying a new
eye drop that has only early stage approval from the FDA. These
studies typically require close observation and blood work to
ensure that if any side effects do occur, they are reported to
the FDA in a timely manner.
Studies involving surgery may seem to come with higher risks.
However, studies of surgical procedures are done to compare a
new procedure with an older one. A person only has the newer procedure
if they were already going to need the older procedure. Thus,
the risks of these studies may seem to be higher, but that is
because surgery usually has higher risks than non-surgical treatments.
If you are being considered for such a study, your surgeon will
tell you why he or she is considering the new surgery, and its
potential advantages and disadvantages. If you do decide to participate
in a research study, you may be assigned to a standard-of-care
group otherwise known as a control group. In this case, you may
not directly benefit by your participation. Control Groups are
just as vital to the research as treatment groups for they are
the comparison of the new drop or surgery being investigated.
All of this information and more is contained
in the pages of a consent form, which can seem intimidating and
overwhelming. However, the information, including the risks, pertains
to each specific study to help you decide whether or not to participate
in the study. We do not want people to participate in any research
study unless they genuinely want to, after they fully understand
the study. It is also important for all our patients to know that
if you choose not to join a particular study, that choice will
not in any way affect the care you usually receive from your doctor.
The Glaucoma Research Center team, the glaucoma doctors at the
Wills Eye Institute, the Wills Eye Institutional Review Board,
and the FDA all have considered the legal and ethical aspects
of the study that is presented to you, to ensure your protection
as a human subject in a clinical research trial. Only you can
decide if participation is the right choice for you. If you or
someone you know is interested in learning more about one of our
glaucoma studies, please feel free to contact us. You will need
an eye exam to determine eligibility. This may or may not be covered
by your medical insurance. This will be discussed with you before
you agree to participate.
If you wish to learn about the many studies presently underway,
please contact the Glaucoma Research Center: Mary Jo Schwartz,
Administrator (215) 928-3123 (mschwartz@willseye.org); Jeanne
Molineaux, Coordinator (215) 825- 4713 (jmolineaux@willseye.org);
Sheryl S. Wizov, Coordinator (215) 928-3221 (swizov@willseye.org).
Welcome our New Glaucoma Fellows
 Dr.Valerie
Trubnik received her medical degree from the State University
of New York Downstate College of Medicine where she was a member
of the Alpha Omega Honor Society and graduated with honors in
Medicine, Surgery, Pediatrics, OB-GYN, and Neuro- Ophthalmology.
After graduating she completed a one year Internship at Lenox
Hill Hospital in New York City, during which time she was awarded
Resident of the Month. Between 2008 and June of this year, Dr.
Trubnik completed her ophthalmology residency at New York Eye
and Ear Infirmary in Manhattan. Outside of medicine Dr.Trubnik
is an award winning dancer, having been a semifinalist, and a
finalist in the United States Ballroom Dance Sport Championship,
and winner of the Northeastern U.S. Ballroom Dancing Competition
in 2001. When asked what sparked her interest in ophthalmology,
Valerie replied: "I first became interested in glaucoma while
in college when I was told that my grandfather, who had never
received an eye exam in the former USSR, was diagnosed with it
during an evaluation for cataract extraction in the United States.
He was found to have advanced pseudoexfoliation glaucoma at the
time of diagnosis resulting in significant visual field loss.
I was both surprised and saddened by the unexpected and silent
nature of the disease and vowed I would pursue it further."
 Dr.Thandeka
Myeni completed her medical degree at the Medical College
of Georgia. During her time at Georgia Thandeka was awarded the
Roman Barnes Society of Ophthalmology Award and the USAA National
Collegiate Minority Leadership Award. After graduation, Thandeka
went on to complete a Medical Internship at the Boston Medical
Center from 2006 through 2007. Dr.Myeni then furthered her education
by pursuing a Masters in Health Management degree at Harvard University.
While at Harvard, Thandeka was awarded the American Medical Association
Foundation Leadership Award. Dr.Myeni completed a residency in
ophthalmology at Howard University in Washington, D.C. Outside
of the exam room, Thandeka is also a dancer. She is mainly interested
in Salsa, West African dance, and Middle Eastern dance. When asked
about her continued training in glaucoma, Dr.Myeni stated: "As
a physician not only do I have a duty to contribute to the body
of knowledge in my field, I also feel a strong sense of obligation
to help provide eye care to underserved populations, both domestically
and internationally. My unique background has contributed to my
global perspective on glaucoma. As a public health practitioner,
I am deeply disturbed by the burden of this disease worldwide.
Having grown up in Swaziland, a small country in Southern Africa
with only one ophthalmologist, I would like to have the skills
needed to treat and address glaucoma."
 Dr.
Jesse Richman is a graduate of Thomas Jefferson Medical
College in Philadelphia where he was born and raised. While at
Jefferson, Dr. Richman was a member of the Hobart Amory Hare Honor
Society and volunteered to provide eye care to the homeless at
local shelters. If Dr. Richman looks familiar, it’s because
he spent time working with Dr. Spaeth in both the clinics and
in the surgical center while a student at Jefferson. Once he received
his medical degree, Jesse spent a year as an Intern at Frankford-Torresdale
Hospital. For the last three years, he has been an ophthalmology
resident at Brown University in Providence, Rhode Island. Jesse
is an accomplished athlete, having been Jefferson's racquetball
champion and has competed in triathlons. He is also an avid rock
climber. When asked about his choice to enter into a career in
glaucoma, Jesse replied: "The decision to pursue a career
in ophthalmology was an easy choice. I always knew that I wanted
to live my life with meaning and I was attracted to the intellectual
challenges that ophthalmology provides. Choosing to focus on a
particular field in ophthalmology was difficult, as I enjoy many
aspects of ophthalmology, but one specialty stood out above the
rest. Caring for glaucoma patients encompasses everything I desire
in a career; difficult medical decisions, intricate surgeries,
and the opportunity to create long-term patients relationships
based on compassion, confidence, and trust."
All photos taken by Bill Romano
 Meet
New Research Fellow Dr. Nont Rutnin
Dr. Nont Rutnin will be completing a Research
Fellowship at Wills Eye Institute between July 2011 and July 2012.
Nont is a native of Bangkok, Thailand and an ophthalmologist at
Rutnin Eye Hospital. He is the nephew of Dr. Uthai Rutnin, one
of Thailand’s most famous ophthalmologists. Nont is a graduate
of Siriraj Hospital, and has trained at Ramathibodi Hospital at
Mahidol University where he completed his residency and clinical
fellowship. He is active in the Thai Glaucoma Society and the
Royal College of Ophthalmologists of Thailand. Dr. Rutnin has
presented his work at the Congress of Asia-Pacific Academy of
Ophthalmology. Besides being a physician and researcher, Nont
is an avid swimmer and tennis player, and a photography enthusiast.
Research Fellow Dr. Lan Lu Volunteers
Her Time
Dr. Lan Lu, one of our newest Glaucoma Research
Fellows, started working at the Glaucoma Research Center in April
2011. Dr. Lu is a native of the Peoples Republic of China and
received her Medical Degree from Fujian Medical University. Dr.
Lu is an accomplished researcher, having numerous articles published
in China.
Lan has been volunteering at the Philadelphia Senior Center- Coffee
Cup Branch every Thursday afternoon during her lunch hour since
early May. Lan discovered the senior center while walking in the
city. She explained to the staff her background as an eye surgeon
in China and how she enjoyed working with the elderly as well
as her work as a research fellow. Lan feels like educating the
elderly on eye care is a very important role. Lan gives basic
education on eye care. Her weekly eye topics include glaucoma,
cataracts, eye diseases such conjunctivitis, macular degeneration,
and refractive error and she spends each Thursday discussing one
eye topic in detail.
The Philadelphia Senior Center - Coffee Cup Branch provides a
place for seniors to have a hot meal and take-home snack, as well
as opportunities for recreation and other supportive services.
A majority of Philadelphia Senior Center – Coffee Cup Branch
members are fluent in Mandarin and Cantonese. The branch is located
at 247 South Tenth Street and is near three senior housing complexes.
It is convenient to Chinatown and Thomas Jefferson University
Hospital and is also open Monday through Friday from 9:00 a.m.
- 5:00 p.m. Their website is http://www.philaseniorcenter.org/l
ocation_coffeecup.
Dr. Lan Lu lecturing to the Seniors at the Philadelphia
Senior Center Coffee Cup Branch
FROM THE “CHAT HIGHLIGHTS” OF THE
GLAUCOMA SERVICE WEBSITE
Blood Pressure and Glaucoma Chat Highlights
Steven Beck, Editor
On Wednesday, May 4, 2011, Dr. Anand Mantravadi, a glaucoma specialist
at Wills, and the glaucoma chat group discussed “Blood Pressure
and Glaucoma.” Click
here to read highlights from this chat.
GLAUCOMA CHAT SUPPORT GROUP
Join Moderators Vivian, Steve and Brittany the 1st and 3rd Wednesday
of every month for a chat about glaucoma hosted by a glaucoma
specialist.
The glaucoma chat support group also meets Monday evenings and
Saturday mornings where patients, family and friends can chat.
For a complete schedule visit: http://willsglaucoma.org/chatsched.htm
We wish to announce the receipt of a generous
bequest, which is of great importance to the continuing function
of the Glaucoma Service Foundation, from the Estate of Mrs. Gertrude
Schrot, a former patient of Dr. Rick Wilson and Dr. George Spaeth.
At present the Glaucoma Service survives because of individual
philanthropic contributions, bequests, funds that have already
been contributed to members of the Glaucoma Service (such as Dr.Wilson),
grants from industry, grants from foundations and agencies (such
as the Scholler Foundation), and the Robison D. Harley Fund for
Glaucoma Education Research. Bequests form a major part of our
income and help support our research, fellows and our patient
educational programs such as the CARES conference. We strongly
encourage those who believe in what we are doing to include in
their Will a provision that assures that the funds will be given
to the Glaucoma Service Foundation. As a 501 (c)(3), all contributions
are tax deductible. Please contact us at (215) 928 3190 if you
have any questions on how to proceed. |
