Item B2
BOARD OF COUNTY COMMISSIONERS
AGENDA ITEM SUMMARY
Meeting Date: March 17, 2004
Division:
BOCC
Bulk Item: Yes _ No X
Department: DISTRICT 5
AGENDA ITEM WORDING:
Proclamation to declare the month of March, 2004 as
Joey Bergsma Retinoblastoma Awareness Month in Monroe
County
ITEM BACKGROUND:
Pam Bergsma is traveling through all counties in Florida in order
to bring awareness to a cancer affecting children's eyes. Pam's
grandson, Joey Bergsma, died needlessly from metastatic
retinoblastoma on December 22,2000. Today's proclamation
may bring awareness to save a child's vision or life.
PREVIOUS RELEVANT BOCC ACTION:
CONTRACT/AGREEMENT CHANGES:
STAFF RECOMMENDATIONS:
TOTAL COST:
N/A
BUDGETED: Yes
No
COST TO COUNTY:
o
SOURCE OF FUNDS:
REVENUE PRODUCING: Yes
No
AMOUNTPERMONTH_ Year
APPROVED BY: County Atty _ OMB/Purchasing _ Risk Management _
DIVISION DIRECTOR APPROVAL:
m4--L>ZA'~ E:-~
MAYOR MU Y E. NELSON
DOCUMENTATION:
Included X
To Follow_
Not Required_
AGENDAITEM#~
DISPOSITION:
JMapor's
llroclamation
WHEREAS, Retinoblastoma is a very rare disease that affects children and is the
most common eye tumor in children and the third most common cancer overall
affecting children; and
WHEREAS, Retinoblastoma is a disease that causes the growth of malignant
tumors in the retinal cell layer of the eye ; and
WHEREAS, The frequency that Retinoblastoma occurs has increased over the
past 60 years and now occurS in one out of every 12,000 children in the United
States. Seven thousand children die worldwide from the disease each year due
to the delay in diagnosis; and .
WHEREAS, Left untreated, Retinoblastoma is almost always fatal; therefore,
early diagnosis and treatment are critical in saving lives and preserving visual
function; and
WHEREAS, Monroe County supports eye pathology screeriing at birth and all
well-baby exams to ensure that everything is being done to detect ocular diseases
in newborns, infants and toddlers;
NOW THEREFORE, by the virtue of the power vested in me as Mayor of
Monroe County, Florida, I, Murray E. Nelson, do hereby proclaim March 2004 as
Joey Bergsma Retinoblastoma Awareness Month
In Monroe County.
WITNESS my hand and seal of the County of Monroe, Florida, this 17th
day of March, 2004.
~.~ t:..~
Mayo ay E. Nelson .
Mo e County
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FLORIDA DEPARTMENT OF
John O. Agwunobi, M.D., M.B.A.
Secretary
Jeb Bush
Governor
HEALT
FOR IMMEDIATE RELEASE
January 27, 2003
Contact: Bill Parizek
850-245-4111
DEPARTMENT OF HEALTH REMINDS PARENTS TO GET REGULAR EYE SCREENING
FOR NEWBORNS AND INFANTS
--January is Joey Bergsma Retinoblastoma Awareness Month--
TALLAHASSEE-Florida Department of Health (DOH) Secretary John O. Agwunobi, M.D.,
M.B.A., joins with the Florida chapter of the American Academy of Pediatrics and Pam Bergsma
to recognize January as Joey Bergsma Retinoblastoma Awareness Month and remind parents
and doctors of the importance of newborn and infant eye examinations.
Eye examinations can quickly alert parents to the need for corrective lenses as well as
potentially devastating diseases like retinoblastoma. Retinoblastoma is a cancer that strikes
newborns and young children. If caught early, it is completely curable.
Since three-and-a-half-year-old Joey Bergsma died from retinoblastoma, his grandmother, Pam
Bergsma, has worked tirelessly to raise parents' awareness of this cancer.
"It is important that we raise awareness of this cancer," said Agwunobi, "because, in many
cases, there can be a warning sign: a white dot in a child's eyes when photographed. If this
sign is present and brought to the attention of a physician, it can often lead to the early
diagnosis essential for a cure."
If parents notice a white dot in the center of their children's eyes or in photographs of their
children's eyes, they should immediately call their primary physician for an examination.
The American Academy of Pediatrics and its Florida Chapter advise that babies' eyes should be
examined at birth and as a part of routine well-child exams. For more information about the
academy's recommendations, visit their web site at www.aap.orQ.
###
Note: For further information related to Joey Bergsma, please contact Pam Bergsma at 561-
586-2094, loveioev@bellsouth.net or www.lovejoey.com.
4052 Bald Cypress Way. Tallahassee, FL 32399-1701
1(
JOEY BERGSMA RETIN.OB~ASTOMA
AWARENESS
Retinoblastoma is the most common eye tumor in children and the third most common cancer
affecting children overall. It develops in the retinal cell layer of the child's eye. One in every 12,000
children in the United States is affected with retinoblastoma. Ninety percent of the cases occur in the
first five years of life. When detected early the eye and vision can be saved and life is not threatened.
When left untreated, the child's eye is enucleated (removed) in order to save their life. If retinoblastoma
is allowed to escape the eye there is no cure. Early detection is vital to saving vision and life.
NOTE: At a recent seminar, an ophthalmologist told us that he diagnosed a bilateral case (both eyes)
in a young girl almost 13 years of age. I heard from a young woman that lost her eye at the age of 16.
What you need to know:
1. You can take a picture of a tumor or cataract as well as other eye diseases.
Always be alerted to your PHOTOS. If you take a red eye picture and do not get a red
reflection there could be a problem. Your retina is supposed to reflect light red. In a red eye
picture a tumor will reflect white. In most cases of retinoblastoma, there is a history of white
dot pictures that would have saved the child's vision or life. www.loveioev.com
2. The ophthalmoscope needs to be used at every exam in a darkened room. It is
the stethoscope for the eyes. The pediatrician will simply shine it into the child's eyes looking
for a red reflex reaction. If they do not see a strong red reflex, the child should be referred
immediately to an eye doctor. If you are not sure an ophthalmoscope is being used, do not
assume it is, ASK. A tumor or cataract can start to develop at anytime in childhood.
3. An infant needs an eye dilation exam. The pupil of an infant is small in diameter and
needs to be dilated in order for the ophthalmoscope to see tumors and other ocular diseases
such as cataracts effectively. It is recommended to have the eye dilation exam before leaving
the hospital, the 6 to 8 week well-baby exam and the 6 to 9 month well-baby exam. The
pediatricians that are using eye dilation drops want to see all doctors doing the same. It adds
only ten seconds of time to the regular exam and costs pennies.
NOTE: One in every 677 live births in the United States has a treatable eye disease that will blind if
not detected and treated. Cataracts are ten times more prevalent in infants than retinoblastoma
and can blind as early as two months of age if not treated. Pre mature babies are the only infants in
the US that have an automatic eye dilation exam. ..we need to ask. Early detection and referral is
the key to saving our children's vision and, in the case of retinoblastoma, lives.
My beloved grandson, Joseph Hollander Bergsma, died needlessly from metastatic retinoblastoma on
December 22, 2000. Joey was three years old. Awareness would have saved his life. I was taking
pictures of the tumor reflecting the light and did not know it... these pictures would have saved his vision
and his life. More importantly, if an ophthalmoscope would have been used to screen his eyes at his 15
month or 18 month well-baby exam.. .Joey would be alive. Joey's journey was short, but his message
is powerful. The last year of his life was a miracle. We were at Sloan Kettering in Manhattan for 8
months and the Burzynski Clinic in Houston for over 2 months. The last ten days of his life we were at
home in Florida. Joey died in his house at Lake Osborne where he wanted to be. Everyday was a gift
and I thought he was to be the first child to survive this disease. Through his death I realized the
miracle was, Joey is to be the last child to die needlessly from it.
We are saving vision and lives through awareness.
Cheryl Bull, a grandmother saw coverage on Joey's story last February. Her granddaughter, Elexis,
came to visit in April and they went to Disney World. She developed the pictures from the. trip and
found several white dot pictures like Joey's. Lexis was taken immediately to an eye doctor. Lexis was
the perfect case scenario. The tumor had just started to develop...they froze it off with cryotherapy.
Lexis not only has her eye and her vision; she has perfect vision in her eye. The doctors will watch her
carefully for the next few years, but foresee no problems.
Jennifer was not so lucky. Last July, Sandra Padilla complained to her social worker that there was
something wrong with Jennifer's eye. She was eight months old at the time. Susan Slocum had been
looking at Joey's poster in her Healthy Start Office since last November and had recently seen
coverage on "Joey Bergsma Retinoblastoma Awareness Month at the Palm Beach Zoo" on TV. Susan
told Sandra to take a picture of Jennifer in a dark room...Jennifer's pupil was white. Her eye was
removed...it was already blinded by retinoblastoma tumors. Dr. Timothy Murray performed the eye
enucleation at Bascom Palmer in Miami. It is sad that she needlessly lost her eye, but Thank God she
has her life. Jennifer had this developing at birth. The "ten second, two cent" eye dilation exam would
have saved her eye and her vision.
NOTE: Jennifer also had strabismus; the eye was rolling inward. In some cases tumors or cataracts
will cause irregular eye movement. (examples: cross eyes, lazy eye, etc.) Be alerted to your child's eye
movement; like your photos, this could be an important clue to something wrong.
Joey is smiling.. .his message is being heard.
LEGISLATIVE UPDATE:
The Infant Eye Care Bill, nicknamed "Joey's Bill", was written last year (2002) and heard in four
committees. In the last two hearings the vote was unanimously in our favor. Representative Susan
Bucher sponsored the bill in the House and Senator Ron Klein sponsored in the Senate. The bill
numbers were HB 1117 SB 2062.
This year (2003) the bill passed through the committees in which it was heard; but like last year, was
not allowed to continue through the process to the floor. We will make it to the floor next session
(2004) and "Joey's Bill" will pass...there is no reason not to do this for the children of our state. The bill
sponsors were Rep. Susan Bucher and Senator Alex Villalobos. The bill numbers were HB 0115 SB
2174.
The Bill is asking for the eye dilation exam before they leave the hospital, the 6 to 8 week well-baby
exam and the 6 to 9 month well-baby exam.
These three exams in the first six months of life will help ensure healthy vision for all of the children in
our state. No child will loose an eye, go blind or die to a treatable eye disease again.
Too many children have lost their vision needlessly and had their lives jeopardized this year alone
because we are not doing the eye dilation exam. Healthy vision should be our children's birthright.
Working tOQether we will fix this for the children of our state and our country.
HURRAY FOR CALIFORNIA...THE FIRST STATE TO PASS LEGISLATION FOR INFANT
EYE DILATION EXAMS. As of January 1st 2003, infants will have their eyes dilated for early
detection of ocular diseases at the six week well-baby check up. Do not assume this is being
done...ASK...make sure this is happening for your infantl
For information, posters, presentations, and to HELP with this
important cause; please contact me at the following:
Pam Bergsma (Joey's grandma) loveioevliUbellsouth.net
619 South K St.
Lake Worth, Fl. 33460
561.586.2094
www .Iovejoev .com www .aeocities.com/loveuloev3
JOEY BERGSMA RETINOBLASTOMA
AWARENESS
Retinoblastoma is the most common eye tumor in children and the third most common cancer
affecting children overall. It develops in the retinal cell layer of the child's eye. One in every 12,000
children in the United States is affected with retinoblastoma. Ninety percent of the cases occur in the
first five years of life. When detected early the eye and vision can be saved and life is not threatened.
When left untreated, the child's eye is enucleated (removed) in order to save their life. If retinoblastoma
is allowed to escape the eye there is no cure. Early detection is vital to saving vision and life.
NOTE: At a recent seminar, an ophthalmologist told us that he diagnosed a bilateral case (both eyes)
in a young girl almost 13 years of age.
What you need to know:
1. You can take a picture of a tumor or cataract Always be alerted to your
PHOTOS. If you take a red eye picture and do not get a red reflection there could be a
problem. Your retina is supposed to reflect light red. In a red eye picture a tumor will reflect
white. In most cases of retinoblastoma, there is a history of white dot pictures that would
have saved the child's vision or life. www.loveioev.com
2. The ophthalmoscope needs to be used at every exam in a darkened room. It is
the stethoscope for the eyes. The pediatrician will simply shine it into the child's eyes looking
for a red reflex reaction. If they do not see a strong red reflex, the child should be referred
immediately to an eye doclor. If you are not sure an ophthalmoscope is being used, do not
assume it is, ASK. A tumor or cataract can start to develop at anytime in childhood.
3. An infant needs an eye dilation exam. The pupil of an infant is small in diameter and
needs to be dilated in order for the ophthalmoscope to see tumors and other ocular diseases
such as cataracts effectively. It is recommended to have the eye dilation exam before leaving
the hospital, the 6 to 8 week well-baby exam and the 6 to 9 month well-baby exam. The
pediatricians that are using eye dilation drops want to see all doctors doing the same. It adds
only ten seconds of time to the regular exam and costs pennies.
NOTE: One in every 677 live births in the United States has a treatable eye disease that will blind if
not detected and treated. Cataracts are ten times more prevalent in infants than retinoblastoma
and can blind as early as two months of age if not treated. Pre mature babies are the only infants in
the US that have an automatic eye dilation exam...we need to ask. Early detection and referral is
the key to saving our children's vision and, in the case of retinoblastoma, lives.
My beloved grandson, Joseph Hollander Bergsma, died needlessly from metastatic retinoblastoma on
December 22, 2000. Joey was three years old. Awareness would have saved his life. I was taking
pictures of the tumor reflecting the light and did not know it... these pictures would have saved his vision
and his life. More importantly, if an ophthalmoscope would have been used to screen his eyes at his 15
month or 18 month well-baby exam...Joey would be alive. Joey's journey was short, but his message
is powerful. The last year of his life was a miracle. We were at Sloan Kettering in Manhattan for 8
months and the Burzynski Clinic in Houston for over 2 months. The last ten days of his life we were at
home in Florida. Joey died in his house at lake Osborne where he wanted to be. Everyday was a gift
and I thought he was to be the first child to survive this disease. Through his death I realized the
miracle was, Joey is to be the last child to die needlessly from it.
We are saving vision and lives through awareness.
XJ . {
.,
BaseOID
Palmer
EYE INSTITUTE
University of Miami.
SCHOOL OF ~EDICINE
P.O. BoxO)6~0
Miami, FL 33101
(305) 326.6000
Toll Free in Florida
(800) 329.7000
Florida State Legislature
October 16, 2001
REF: Newborn Eye Screening Program Proposal
To Whom It MayConcern:
I appreciate the opportunity to discuss with you proposed new legislation to evaluate a
Newborn Eye Screening Program for the State of Florida. I am currently the director of the
Ocular Oncology Service at the Bascom Palmer Eye Institute I University of Miami-School of
Medicine. This Ocular Oncology program is one of the largest existing in the United States
and screens. treats and follows a large contingent of children with debilitating pediatric
diseases, particularly. pediatric oncology problems focusing on Retinoblastoma.
Retinoblastoma is the most common primary eye canger in children and affects
approximately one in twelve thousand children born within the United States. This
devastating childhood cancer and many other pediatric eye diseases can be more
effectively screened utilizing a Newborn Eye Screening Program as discussed in this
proposal. The focus of this proposal is a mandatory pupilary dilation of all newborns. and
the establishment of an appropriate task force to advise the State Department of Health
Services in the detection .of pediatriC congenital and ocular abnormalities. and pediatric
developmental ocular abnormalities that may lead to blindness, vision impairment or
premature death for children in the State of Florida.
Using Retinoblastoma as an example, this disease.. with early diagnosis is imminently
treatable in such a way as to both save life and, with early treatment intervention. save the
affected eye with usable sight. We suggest that dilation of pupils at birth, the 6-8 week well-
baby exam and future well baby exams would significantly decrease the delay in recognition
of a variety of ocular disorders that are both sight and life threatening.
My colleagues and I feel that this legislation would be a first step towards enhancing the
care of all children born in the State of Florida. We hope that this proposed legislation would
be closely evaluated by you so that its benefit can be realized within a short future.
On behalf of myself, .the Bascom Palmer Eye Institute and all children who will benefit from
legislation such as this, pie accept our gratitude for your time and attention to this matter..
Sincerely.
Timothy G.
Associate ofessor I Ophthalmology
. Director Ocular Oncology
Bascom Palmer Eye Institute
University of Miami-School of Medicine
William L McKnight \"j!;ion Rt'"sl.'"arch Ct'"nlt'"r : 16.;8 N.W 10 ."\.enu~
Anne Bates Leach Eye Hospital 1900 N.W Ii' StreC't
THE
RETINOBLASTOMA
CENTER
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use
REtInoblastoma
International
A Program of the Center for Cancer and Blood Disease
Childrens Hospital Los Angeles
UNIV'ERSm
Of SOlmlElU'l
CALlFORl'IJA
February 6, 2003
TO: To Whom It May Concern
RE: Pending Legislation before the Florida Legislature related to Dilation of the
Pupils of the Eyes During Well Child Examination for the Early Detection of
Treatable Intraocular Pathology including Retinoblastoma and Cataracts
To Whom It May Concern:
This letter provides a strong endorsement of the efforts of parents, friends, the
public and the legislature in Florida to consider and hopefully pass legislation
which would have the effect of insuring that all primary care physicians and
others who take care of well babies do what ever. is necessary during well baby
care to detect and refer for treatment disorders inside the eye which can cause
blindness unless treated. Specifically these are congenital cataracts and
retinoblastoma.
We were successful in 2000 of having a law passed in the State of California,
which required the American Academy of Pediatrics to assure the members
would receive guidelines, that would allow the detection of treatable causes of
childhood blindness by age 2 months. The only practical way to do this is to
dilate the pupil as part of the well child examination. This procedure is safe, it
takes perhaps 30 seconds of the nurses time during the weigh in of the child, and
requires the pediatrician or primary care physician to do nothing more then they
are currently doing, use the direct ophthalmoscope to observe a "red eye"
reflection after shining light on the eye. Detection of this, which is the same "red
eye" seen in flash photographs, requires coaxial illumination such as a direct
hand held ophthalmoscope present in every pediatrician's office. As part of the
examination now, primary care doctor's do, in fact, do the "red reflex" test looking
for retinoblastoma. However, because the pupil in an infant, baby or young child
is always very small, the detection of any intraocular pathology is rare without
pupil dilation.
The pupil dilation of very small, premature infants has been routine because of
the need to examine the retinas for retinopathy prematurity. Large national and
international studies have detected no evidence of significant side effects with
the use of dilating drops, even in the use of these very small, very sick, babies,
most under 1000 grams at birth.
The Retinoblastoma Center at Childrens Hospital Los Angeles · 4650 Sunset Boulevard, MS #88 · Los Angeles, California 90027 USA
"1?"1 1..1..1:1 "'21:19
www.retinoblastoma.net
facsimile 323 660.8541
The children at risk for congenital cataracts and retinoblastoma are well children
who, for the most part, are normal size. The time that it takes to put the dilating
drop in is perhaps 30 seconds of a nurse's time. The cost is less then ten cents
but the adequate detection of intraocular pathology can in fact prevent blindness
in these children.
Retinoblastoma is rare, probably less then 1 in 10,000, but congenital cataracts,
the other main cause of treatable intraocular pathology, are 10 times more
common being seen as often as once in every 1000 children. At that level, this
incidence compares with congenital heart disease and congenital dislocated hip,
both of which are routinely screened for as part of the well child care.
I want to commend the individuals in Florida, pushing for this legislation and
strongly support on behalf of Retinoblastoma International, which I am medical
dir~ctor and of the Retinoblastoma Center at Childrens Hospital Los Angeles.
.~.
I
A. Linn Murphree, M.D., Director
The Retinoblastoma Center
Childr-ens Hospital Los Angeles
Professor, OphthalmQlogy in Pediatrics
Keck School of Medicine, USC
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Texas Children's Hospital
WV/W. tcxaschi Idrcnshospital.org.
{Ill ~~il~~E OF
7~~~..DuC'T\O"''': MEDICINE
I>avid K. Cuats. \1.1>.
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February 13,2003
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Florida Legislature
Fax: (561) 966-7623
Dear Florida Legislators:
I am writing in support ofthe Joey Bill, the infant eye screening bill in the State of
Florida. This bill would legislate the need for a dilatyd eye examination with a direct
ophthalmoscope for infants before leaving the hospital, at the six-week well child
I
examination and at the six-month well child examination. This would greatly increase
the chances of detecting significant pathology, most importantly retinoblastoma but also
cataract and any other media opacities. The addition of the dilating eye drop would not
cause an increase in time or effort for the physician. It would merely entail instilling eye
drops in the waiting room 30 minutes before the doctor's examination. Currently, the
direct ophthalmoscope examination is done without dilation. This greatly hinders the
ability to detect pathology, especially in the periphery of the eye where retinoblastoma
often is. This eye screening bill could result in earlier detection of retinoblastoma and
other blinding/life threatening. disease hopefully at a time when it is still treatable.
I urge you to support this bill and if you have any further questions, I would be happy to
answer them. Please don't hesitate to call.
Evelyn A. Paysse, M.D.
Assistant Professor of Ophthalmology and Pediatrics
EAP:mlt
I
f
CORNELL
UNIVERSITY
~~~YORI<
.1- .l~BYTERlAN
HOS'ITAI.
Joan and Sanford I. Weill
Medical College
Thorn,1S c. Lee, MD.
Al$i.danll'rofessor
Atsocicrle Diffletar,
Ro~l M. fl/sUIOrth Ophlllldmic Onallogy CtrIltr
Dtpilrlmenl oj OphthAlmology
Dinllltl IIni SII'ftry of the Rttirl/l IInd VilTrold
Ocw/ar OnCD/OfY
To: Susan Booker
From: Thomas C. Lee, MD
Department of Ophthalmology
New York - Presbyterian Hospital
Re: Infant Eye Screening
House Bill Ill? Senate Bill 2062
February 25, 2002
Dear Florida Legislature,
C.Y. StilT PaviWon, PIJ7
520 East 10th Street
Telephone: 212746-4334
Fu: 212 746-2480
~-m.II:lc12OO2Ozned.conWI.edu
The above bill is directed at early detection of a pediatric eye tumor called
retinoblastoma. Unlike most other pediatric cancer, retinoblastoma has a very high cure
rate as long as it is detected early in the eye. There are a number of states which are
currently considering legislation to require that the standard eye exam done in a
pediatrician's office include the use of dilating eye drops to better facilitate detection
with a standard ophthalmoscope. In addition, this test would be done at two
examination$ with the first being at 6.8 weeks and the second at 6.9 months. Early
detection will not only improve chance for survival but it will also increase the chance for
retaining vision. I fully support the bill above and hope that you will give it serious
consideration.
SrZ: e--'--
Thomas C. Lee, MD
San
Halllon
Valley
Prilnary Care
l\1edicaI
Group
Pediatrics
Thomas F. Long. M.D.
Tracy L. Trotter, M.D.
Colleen M. Hogan, M.D.
Allen D. Obrinsky, M.D.
Tracy 1: Trujillo, M.D.
Internal Medicine
Sue J. Knight, M.D.
Jon C. Rasak, M.D.
200 Porter Drive
Suite 300
San Ramon, CA 94583
hdiatrics
925.838.6511
Internal Medicine
925.838.6533
Administration
925.838.6500
Fax
925.838.6544
April 24, 2002
Mrs. Pam Bergsma
619 South K Street
Lake Worth, FL 33460
RE: Pediatric eve exams
. Dear Mrs. Bergsma:
I am primary ~are pediatrician practicing in a suburban community in
Northern California. We have a group comprised of 6 pediatricians
and 3 pediatric nurse practitioners. We have been performing a
dilated eye examine on every infant prior to 2 months of age since
1984. During the last 18 years and over 6300 infants we have had no
side effects or adverse reactions and have diagnosed 3 infants with
congenital cataracts prior to 8 weeks of age.
The drops are instilled by the nurses when the infants are first
brought into the exam rooms and by the time we complete our visit
the eyes are well dilated and easy to examine. The ophthalmoscopic
portion of the exam adds about 20-30 seconds to the visit. The babies
are perfectly comfortable with this procedure and the parents are
delighted with our careful approach to their child's health and
welfare. .
Although we have not had a child with retinoblastoma in our
practice, we realize it is only a matter of time and remain vigilant. I
only wish we had other ~imple, inexpensive and safe methods of
S~rt:c:i1iClg [or oth~r Jiseases that have as mUJ:;h of a pOlential
. devastating impact as loss of sight or loss of life.
I wish you well in your campaign to educate all physicians providing
care to infants about this sight-saving and life-saving procedure.
Very truly yours,
~~~~1J)
Tracy L. Trotter, MD, FAAP
Pediatric & Adolescent Medicine
HmmNGTON MEDICAL FOUNDATION
All ~ffiUfJtt of Southml C4lifomi~ HtaltlsC4rt SystCJIU
:tH6 Foothill ~oulevard
Suite SOO%
La CanadA, CA .9 not.
(SI8) 790-5583
Fax (818) 7,90-,9517
DESCANSO PEDIATRICS
Kathleen A. Smith, M.D.
Laura E. Mabie, M.D.
Mary L.. Doyle, M.D.
. Gregory S.. Uzer, M.D.
John G. Rodlrte, M.D.
Florida State L egisla.tUN
Tallah assee, Flclrida
Re:House Bill 1117
S,nate Bill 2062
Dear Sirs and Madams:
I
. My name is Laura Mabie and I am a general pe~iatrician locatedjust
outside Los Angeles, California. My officehasbeen doing n dilated eye
exam on all of our 6-t08 week old.infants for the lut eight yenrs. My
meclienl a~sistants pla.c~ tbe dilating drops into th~ inIunl's ej'es whi1~ the
baby is b-eing w.~i$bed. The physiciml then proceeds with the regular
e.xam, and does the ophthalmoscopic exam at the end. ThE'! ClextraU exam
takes Itsr- than ten seconds. The babies suffer no sicle effects. rhey are
not held down in any way. Often the exam is done with the baby in its
motb~r'~l\.rmE:.. . .-
This exam is simple, easy, cheap, and very cost-effective. \Vbile I have
never diasno$~dn cue ofretinobh1.stoma, r bl\v~ picked up thrH eEl.$U of
eC\ns~nitl1\ catnrncts tha.t need~cl to be trented imtned.iateJy,
I \v'ould urge your support of the abov~ mentioned bills. This could easily
uye thesigbt, ifnot the lives, ofbundreds ofFlorida!s children. .
Sincerely,
';?~~<_/10
La.un E. Mabj~, M.D. FAAP
Jeb Bush
Governor
John O. Agwunobi, M.D., M.B.A.
Secretary
FLORIDA DEPARTMBNT OP
December 2,2002
Ms. Pam Bergsma
619 South K Street
Lake Worth, FI. 33460
561.586.2094
Dear Ms. Bergsma:
lam writing this letter in support of the Infant Eye Screening Bill and urge the
Florida Legislators to do whatever possible to see that this 'bill gets passed in the
2003 session.
The eye dilation examinations in the beginning of life are vital to the health and
welfare of our children. The ophthalmoscope is to be used for the eyes in a
darkened room at every examination; the same way the pediatrician uses the
stethoscope at every examination. In infancy, the pupil of the eye is small in
diameter, therefore an eye dilation drop needs to be added in order for the
ophthalmoscope to detect tumors and cataracts developing in the eyes.
The drops cost pennies and will add only seconds of time to the well baby
examination. One in every 677 live births has a treatable eye disease. Early
detection and referral is the key to saving the vision and, in the case of
retinoblastoma, lives of these children.
The Infant Eye Care Bill will help to ensure healthy vision and life for the children
of the state of Florida.
~~
"",-. :72"
J n ~Iecki, MD, MP , ACPM
Director
Palm Beach County Health Department
Palm Beach County Health Department
P.O. Box 29,826 Evernla 51.,
VVestPalmBeach, FL 33402
~
!:P:"'H.
T-H '.1..' L
M ,;O~L..O;:G;Y
BRAD D. SIMONS, MD, PHD, PA
November 27th, 2002
Re: Infant Eye Screening
To whom it may concern:
Retinoblastoma is the most common ocular malignant tumor of childhood and although it is not a
common disease, it is disproportionately important because its misdiagnosis is one of the few errors
in the practice of ophthalmology that can lead to the death of a child. With early detection and modern
treatment long-term survival rates are over 90%. Thus early detection and intervention is the key.
Even well trained pediatricians can have difficulty detecting an abnormal choroidal light reflex in an
eye harboring a larger retinoblastoma. Nevertheless, it is important for pediatricians to continue to
screen for any pupilary abnormalities throughout early childhood. Any reflex that appears abnormal.
should be referred to a pediatric ophthalmologist for a complete retinal examination.
I hope that the proposed legislation is closely evaluated and given serious consideration. I thank you
in advance for your assistance with this matter.
Sincerely,
;:d~~hD
Three Palms Center, Suite 210
2141 Alternate AlA South
Jupiter. Florida 33477
P 561/747 4100
F 561/747 8822
www.braddsimons.com
. FlU
~ ~"WlCWJ. t7N1vz:lt:In'r
Offia ",. r;w,
November 5, 2001
Florida State Legislature
RE: Newborn Eye Screening program Proposa,l
To Whom It May Concern:
The proposed Newbom Eye Screening Program for the State of Florlda
addresses a serious heatth concern - prev~tlng blindness in future generations
of Floridians. As Dean of the College of Health and Urban Affairs at Florida
Intemational University I recommend the PrOpo~ed legislation. .
. .
Implementation of this leglslatlon wUl save the vision of hundreds of infants bom
in Florida every year. Moreover, It will do so in a co$t-effective manner.
On,' chUd In every 677 live births is affected with a treata~e eyt OlsNse or
anomaly that wiJl causa blindness unless detected early. Tne cost to the State in
direct and Indirect costs for a blind child over the COUF'$e of a lifetime is
approximately $2 million. The cos1 of the proposed scr&enlng Is that for two
drops of dUating solution and 10 seconds of a nurSe's time. Even when the costs
for education and oversight are ealC\.llated, the economic benerft$ to the State are
overNhelming. Tne ~nefits to children and their families Is.lncalculable.
. .
For these reasons J urge you to consider the proposed legislation for the benefit
of al/ Floridians. '
~. . ~ Sincerely, '
~..~r~
Ronald M. Bmman, Ph.D.
Dean ,.
. Ca!1ep cl HaI:l aM t.lriral AI!m
~ool of'HalQ · s=l ciN~' Sc!IocI or~ Ie ~t. Sc:.I.l SoC.l1I1.llt
\Jft.~~ pm ~ !CS ~~.11200 S. 'W, am ~ M"1&:Il, 1133199 . 'Tel: )C.H4HHO' he ~)-f~"'O, 'ft'W~.du
. ~--"":~iI."r.. ',r ~.,..__."..__~
Medical Associates, p.e.
430 W. Lawrence Harris Hwy.
Slocomb, AL 36375
Phone: 334-886-9400
FAX: 334-886-3713
November 15,2002
Dear Legislators,
I am a physician who has relocated my family to Celebration, Florida. I write this letter
to stress to you the importance of eye exams for infants and children. Currently it is not
required, nor is it routine for physicians to dilate infants eyes at birth or to perform eye
exams with an ophthalmoscope. While most doctors check eyes at well child exams,
without dilation of the eye it is impossible to see the retina clearly. A simple exam, which
requires 10-15 seconds ofa physician's time, can make the difference between sight and
blindness for a child suffering from a visual aftliction. While hearing screenings are
gaining mandatory acceptance, vision screenings are ignored. I am asking you to support
our cause and make a difference to a child.
My two-year-old was diagnosed in November of2001 with retinoblastoma. Doctors had
to remove his right eye and he underwent chemotherapy. Had my wife and I not had any
medical training, his tumor would have gone undiagnosed, and he would have died. A
simple dilated eye exam by the pediatrician would have perhaps saved his eye or at least
partial vision. As many as 7000 children die every year from retinoblastoma and many
more lose vision to cataracts or other eye related diseases. Vision is our most precious
sense, and I believe all to often we take it for granted.
Please, as a physician, but more emphatically as a father, I ask you to take the time to
consider and act on this cause. You have a chance to make a huge difference in the
quality of life for many children and set precedence for the rest of this great nation- don't
let them down.
Sincerely,
I~f~
Ke~ M. Ho~, MD F.A.A.F.P.
KMH/hh
Y~!f ~ ai>>, gsl'
<f.9(JJ ~~!Jexd g;~ st'~-4
!Boca-~. ,gy JJ4J4
off 0' ~-4 77-Joff24
Pam Bergsma
619 South K St.
Lake Worth, Florida 33460
561-586-2094
lovejoey@bellsouth.net
Dear Pam Bergsma,
Let it be known to the Florida Legislators that I, Tamara L. Maule, O.D., P.A. of 8903 Glades
Road, Bay Al-4, Boca Raton, FL 33434 on this day, November 19, 2002, hearby express my
wholehearted support of the Inf~t Eye Care Bill nicknamed "Joey's Bill" and urge Florida's
Legislators to do whatever possible to see that this bill gets passed in the 2003 session.
Dilated eye health exams in the beginning of life are vital to the health and welfare of the children
of our state. According to FIU, one in every 677 live births has a treatable eye disease that will
blind if not detected and treated. Plus, one in every 12,000 children in the United States is
affected with retinoblastoma, which, as in Joey's case, will kill if not detected and allowed to
escape the eye. Too many of our children are at risk to blindness and in the case of
retinoblastoma, death.
Every child born has the right to healthy vision and life. This legislation will help to ensure that
right.
Sincerely,
Tamara L. Maule, 0.0., P.A.
TLMaule@iuno.com
561-477-3524
c8..Y'<.JS
[<1c1CERS
LUI J. Rosch, M.D.
esidenl
lY H. Rosenman, M.D.
ice President . .
:lsonH. Hendler, M.D.
:cretaryffreasurer.
.chardA. Rader,M.D.
tecutive Director' .
~mnim1UCJtl.ftitutt of StTtSS
Pam Bergsma October 10, 2001
619 South K Street
Lake \V orth, FL, 33460
Dear Pam:
Having been somewhat involved in Joey's care with respect to
recommending various consultants and.. treatment programs I am very
familiar with the trials.. and tribulations he endured, as well as your
supportive and at time heroic efforts throughout this unfortunate ordeal.
The great tragedy is that all of this could have beenpreveilted by a simple
and inexpensive procedure that takes less than two minutes and can be
performed with equipment that is readily available; . You are to be
commended for taking the initiative to insure that legislation be enacted to
.prevent this tragedy from happening to countless others.in..the future, since
this disorder usually does not produce symptoms until it is too late to be
cured.
)ARD OF TRUSTEES
:>bert Ader, Ph.D.. ,
:rbertBcnson, M.D.
uy L. Cooper, Ph.D.
ichael E. DeBakey,M.D.
lward C. Donovan
el Elkes, M.D. I hope the Florida legislators will have the foresight and wisdom to pass the
::orgeS.Everly, k, Ph.D. infant eye-screening bill (SB2063, Hb 1117, commonly referred to as "Joey's
.chard Priedman, Ph.D. ) th
:>bertI. Haggerty, M.D. Bill" during. e 2003 session. Appropriate eye examinations in infancy are
elson H, Hendler, M.D. extremely important not only to detect retinoblastoma, which is; usually
:~:my, M.D. lethal if not diagnosed early, but also other causes of blindness and visual
~jiro lkemi, M.D. ' impairment. It is estimated that one in every 677 children, who are
hn Laragh, M.D. apparently healthy at birth, has a diagnosable eye disorder that can cause
mes 1. Lrnch, Ph.D. blindness or permanent visual damage if it is not detected early when it can
lie H. Mlller, Ph.D. b ed d all d d' . ., .
enneth R. Pelletier, Ph.D. e treat an. usu y cure . In ad ltion to saVIng lives and enhanang the
.chard H. ~ahe, M.D. quality of life, the simple screening procedure mandated by this legislation is
Jssel I, Relter, Ph.D., D. M~bviouslyextremely cost effective and could save millions of dollars in just a
lul I. Rosch, M.D. f f PI 'd 'd h d h fi I'd'
lY H. Rosenman, M.D. ew years or on a resl ents, testate, an ot er sea lnterme lanes.
)rman Shealy, M.D., Ph.D.
mbeestEH. Sskinner, Ph.D. As a physician, parent and grandparent, it is very difficult for me to see any
) r . pencer h thi b'll h ld
larles Spielberger, Ph.D. reason w y S 1 5 ou not be passed as soon as possible, since it
arvin Stein, M.D. represents a "Win-Win" situation for all involved.
larles P. Stroebel, M.D., Ph.D.
e Thomas, R.N., Ph.D. S' 1
vin Toffler mcere y yours,
:dford B. Williams, Ir., M.D. /J () _ _ I .J.A ^
~wartWo1f,M.D. ra..c..J! ,~ ~"V,
tUNDINGTRUSTEES PaulJ. RQ~, M.D., F.A.C.P.
mnan Cousins President
Lns Selye. M.D., Ph.D., D.Sc
Clinical Professor of Medicine and Psychiatry
New York Medical College
221 N. Country Oub Drive
Atlantis, FL, 33462
PJR: tIn
Cc: Hon. Jeb Bush
124 PARK AVENUE . YONKERS, NEW YORK 10703 . PHONE 914-963-1200 . FAX 914-965-6267
Jeb Bush
Governor
liiEALTf
John O. Agwunobi, M.DA M.B.A.
~ecretary
FOR IMMEDIATE RELEASE
January 27, 2003
Contact: Bill Parizek
850-245-4111
DEPARTMENT OF HEALTH REMINDS PARENTS TO GET REGULAR EYE SCREENING
FOR NEWBORNS AND INFANTS
--January is Joey Bergsma Retinoblastoma Awareness Month-
TALLAHASSEE-Florida Department of Health (DOH) Secretary John O. Agwunobi, M.D.,
M. B.A., jOins with the Florida chapter of the America"n Academy of Pediatrics and Pam Bergsma
to recognize January as Joey Bergsma Retinoblastoma Awareness Month and remind parents
and doctors of the importance of newborn and infant eye examinations.
Eye examinations can quickly alert parents to the need for corrective lenses as well as
potentially devastating diseases like retinoblastoma. Retinoblastoma is a cancer that strikes
newborns and young children. If caught early, it is completely curable.
Since three~and-a-half-year-bld Joey Bergsma died from. retinoblastoma, his grandmother, Pam
Bergsma, has worked tirelessly to raise parents' awareness of this cancer.
"It is important that we raise awareness of this cancer," said Agwunobi, "because, in many
cases, there can be a warning sign: a white dot in a child's eyes when photographed. If this
sign is present and brought to the attention of a physician, it can often lead to the early
diagnosis essential for a cure."
If parents notice a white dot in the center of their children's eyes or in photographs of their
children's eyes, they should immediately call their primary physician for an examination.
The American Academy of Pediatrics and its Florida Chapter advise that babies' eyes should be
examined at birth and as a part of routine well-child exams. For more information about the
academy's recommendations, visit their web site at www.aap.orQ.
###
Note: For further information related to Joey Bergsma, please contact Pam Bergsma at 561-
586-2094, 10veioeY@bellsouth.net or www.lovejoey.com.
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JOEY'S PETITION
NOTE:
I have tens of thousands of letten just like the one following.. ..individual letters of
support for the Infant Eye Care Bill, "Joey's Bill".
This one is from a nune in Boynton Beach that sent a penonal note I thought you
would C"md of interest. (copied below)
__ 02/;3?3
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Letten come in daily from across the state....People from all walks oflife, young
and old are signing letters and sending them to me. The majority are from citizens
working in the health care community, social senrices and education. People that
are caring for and working with the children of the state of Florida!
Pam Bergsma
619 South K St.
Lake Worth, Florida 33460
561-586-2094 loveioev@bellsouth.net
Dear Pam Bergsma,
Let it be known to the Florida Legislators that I,
::f II N 6- -r J'1of( t€ () c Cd
(print name and profession)
rt e 1/$ le~e QI
Alo;e5 C
~, c
~5 30 f}//lISL e'/ G~ g~I/11T{)/-I /3el1-c-~ rL-
(print full address) 3:3 Y 3 7
on this day, . .
(date) I i/ J4.... re ~ ,J/Jo 3
support the infant eye care bill, nicknamed "Joey's Bill", and urge the Florida
Legislators to do whatever possible to see that this bill gets passed in the 2003
session. The eye dilation exams in the beginning of life are vital to the health and
welfare of the children of our state. According to FlU, one in,every 677 live births
has a treatable eye disease that will blind if not detected and treated. Plus, one in
every 12,000 children in the United States is affected with retinoblastoma which; as
in Joey's case, will kill if not detected and allowed to escape the eye. Too many of
our children are at risk to blindness and in the case of retinoblastoma, death.
Every child born has the right to healthy vision and life. This legislation will help to
ensure that right.
Thank You for Your Attention,
(signature) ft~:r- /7;~G/ R.A('
t7
Phone: 5 ~ / - 73..;2... -3 9' 30
Email:
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