TRIO Chapter Activity Report
Long Island Chapter - January 2008
I’m
currently coordinating a Joint Press Conference with
State
Senator Kemp Hannon and
conference
will be held on Valentine’s Day- February 14th at 10:45
AM. We
will be discussing the importance of organ donation and the
opportunity
for New Yorkers to sign up at and be included in the
Donate
Life Registry. We will also be publicizing the
implementation
of the
new laws. One law involves the prominent display of organ
donor
designation on the front of the driver’s license (as opposed
to
the
nearly impossible writing on wax which was the case until
today).
All New
Yorkers will be receiving new driver’s licenses so we feel
this
is a
prudent time to publicize and promote the Donor Registry.
Our
Annual Holiday party was a lot of fun and we have already
signed a
contract for an upgraded venue where we will be holding
our
2008
Celebration Of Life
Birthday
Events received a great deal of positive feedback and we
will
continue to plan our 2008 Re-birthday Event this week.
We are
also planning an even larger event this year with respect
to
our
annual “LI TRIO Donor Rose Garden Ceremony” where hundreds
of people
get together at our garden and honor organ donors and
their
families while recipients thank them for The Gift Of Life.
This
outdoor
event is growing exponentially and we are expanding our
tent
and chair
rentals, catering, and Donor Family Invitees.
We will
be singing The National anthem at Shea Stadium this year
for
the last
year of the Stadium and we are working to upgrade the
event
to an
“Organ Donor Awareness Day At Shea Stadium this year. We
will be
participating in additional field activities and hosting
information
tables at Shea this year as well.
The Long
Island TRIO Singers will also be performing on the field
at
National
Anthem on August 11, 2008.
Many of
our members sent us positive feedback with regard to our
Medicare
Special December Issue of our newsletter publication.
There are
several LI TRIO members and interested parties who are
educating
professionals, caregivers and people with Medicare about
Medicare
Health Options. We are pleased to announce another free
web
seminar brought to you by
the
details by pointing your browser to our chapter’s web sitewww.
litrio.org.
Topic:
"Understanding Your Medicare Health Options"
Whether
you are in Original Medicare or a Medicare private health
plan
(like an HMO or PPO), it is important to understand your
Medicare
health plan choices. To educate health care
professionals,
family
members and people with Medicare about Medicare Health
Options,
the
educational
web seminars that will explain:
*Why you
should understand your Medicare health plan options.
*What
your Medicare health plan options are.
*How to
choose a Medicare health plan.
*How to
better understand the Medicare health plan you have.
How: All
you need is a computer with an Internet connection at 56K
or better
and a phone (preferably with a high quality speaker).
You
will be
viewing the graphic portion of the presentation over the
Internet
and listening to the audio portion on your telephone. You
will
be
telephoning a toll free number.
If you
are unable to participate in this seminar, Long Island TRIO
will
be
provide you with a recording of this seminar on our website-
LI
TRIO welcomed the new year
and
our speakers with a unique
meeting
and a full house. We
were
fortunate to have two informative
guest
speakers at our January 2008 meeting.
Our
audience knew they had a special
program
to view when
University
Transplant Social Worker-
Freda
Martin, LISW and Transplant
Coordinator
–Rosanna Luongo, RN presented
the
topic: “Life After Transplant;
Partnering
With Your Transplant Team”.
LI
TRIO very much appreciated the
discourse
that took place at our monthly
general
membership meeting.
It
is important to consider that although a transplant is not a
cure, (in
the
case of a kidney transplant for example) transplantation
provides
the
ability to resume a lifestyle without the constraints of
dialysis. The
transplant
process can be overwhelming, but it is a process that
a
transplant
recipient can manage once he or she understands his
or
her
role on the team and his or her responsibilities. It is
imperative
that
the recipient is educated and informed as he or she
proceeds. It
takes
a team effort to make sure the recipient is physically and
emotionally
prepared for this life altering experience. It is
important to
feel
comfortable with the team so the recipient can address all
his or
her
concerns as they arise. It is emphasized that we, the
recipients
are
the number one member of the team and we can work together
for
the best possible outcome. While all members of the
transplant
team
participate in the process, each member has a specialized
role.
Our
January meeting focused on the team working together after
the
day
of the transplant surgery.
Each
member of the transplant team is highly skilled and wants
the
best
outcome for the recipient. But the most important member of
any
transplant
team is the recipient. Each member of the transplant
team
will
respond to the recipient's actions. We know our body best.
We
must
be our body’s advocate. It is very important to take our
medications
as prescribed and on time (!) and tell our
healthcare
team
about any health changes we experience such as changes in
blood
pressure, fever, or infection.
The
transplant coordinator has an enormous role. This person
usually
is
a registered nurse and a coordinator works closely with the
recipient
before and after the surgery. We were impressed that
questions
and can be contacted in the event of an emergency.
Every
transplant recipient is also assigned to a social worker
who will
complete
an assessment to ensure that the recipient's needs are
met
prior
to and subsequent to the transplant surgery. The social
worker
role
may be slightly different at each center. Social work
services are
not
only available to the recipient, but also to the recipient's
family
and
(in the case of a living related or unrelated donation) to
the
donor.
The social worker provides support, education and
counseling
to
reduce stress during and after the transplant process. Social
workers
usually have extensive knowledge of community services
available
to transplant recipients.
The
transplant social worker is highly skilled at assisting
patients and
their
families with adjusting to life post transplant. The
social worker
also
acts as a sounding board so the recipient and his or her
family
can
feel comfortable having open discussions with the social
worker.
In
some cases, the social worker may also be able to offer
information
with respect to Medicare, Medicaid and other
insurance
related
issues. There is usually a transplant financial coordinator
who
will
also provide information with regard to coordination of
benefits,
prompt
correction of errors in hospital and/or physician bills,
coverage
of
immunosuppressives and other insurance issues.
In
addition to the social worker, many transplant centers have a
psychologist
or psychiatrist to assist the recipient in coping
with the
complex
transplant process and the changes it will make in the
recipient's
life. This person is a part of the interdisciplinary
treatment
team.
January's
meeting provided us with a humanistic
perspective
on the new life patients and
their
support team may encounter. The
questions
and answers ranged from reactions
to
medications to changes in family
dynamics.
As we know, each transplant
center
has individual ways in
which
they interact with their patients.
Our
speakers shared their experiences
and
we found them to be very informative.
Next
Meeting-February 13, 2008
Hot
Topic: “Drug Interaction With Immunosuppressives”
Our
February 13th meeting
welcomes back Dr. Larry Chodoff, Director
of
Medical Affairs Transplantation- LifeCycle Pharma. After 17
years
of
practice at the
Chodoff
joined Novartis Pharmaceuticals Corporation in 1997, as
Associate
Director of Clinical Research, managing global research
and
development programs in organ transplantation and autoimmune
diseases.
Prior to joining LifeCycle Pharma, Dr. Chodoff held the
position
of Medical Liaison in Transplantation and Immunology at
Roche
Laboratories. Dr. Chodoff received his Pharm.D. at the
University
of the
LifeCycle
Pharma’s LCP-Tacro program is entering Phase II clinical
trials.
Dr. Chodoff will fill us in on the LCP-Tacro program as
well as
other
advances in immunosuppressive medications.
Our
February 13th meeting
will include a special discussion lead by
Dr.
Chodoff as he introduces a topic near and dear to so many
transplant
recipients’ hearts; “Drug Interaction With
Immunosuppressives”.
Tacrolimus
is an immunosuppressive medication taken to prevent
rejection
after organ transplantation. LCP-Tacro is being
developed
as a
once-daily tablet version of tacrolimus, with improved
bioavailability
and reduced variability; compared to both Astellas'
twice
daily version of tacrolimus (Prograf), and its
modified-release
version
of tacrolimus for organ transplant recipients. This is
expected
to
represent significant improvements for patients.
As many
of us know first hand, transplant recipients need to
maintain
a minimum
level of immunosuppressives in the blood to prevent
organ
rejection. Levels that are too high increase the risk of
serious
side
effects such as, kidney damage or hypertension. Therefore,
the
immunosuppressive
levels need to be managed carefully. Transplant
recipients
are typically obliged to make frequent visits to the
hospital
for
monitoring and dose adjustments for months after receiving a
new
organ.
Management of the tacrolimus levels in particular (for
those
who take
tacrolimus) is complicated by the low bioavailability of
Prograf,
its variable absorption, and its interaction with food
and other
drugs.
We look
forward to once again welcoming a special friend of Long
Island
TRIO, Dr. Chodoff and we trust this will be a highly
worthwhile
and
informative session.
The LI
TRIO Speakers Bureau
Our
Organization’s High School Speakers Education Program
The goal
of the LI TRIO High School Education Speakers Program is
to help
spread knowledge and awareness of the need for organ
donation.
Our
target audience is comprised of high school students in
health
and science classes in the junior and senior classes. Our
audience
also includes school administrators and teachers in the
high
schools.
On occasion, we also extend our reach to local and
community
based colleges.
The Long
Island TRIO Speakers spoke to students at Chaminade
High
School and currently have January 2008 bookings at JFK High
School
and
The
speakers also lectured at Mephan, Calhoun, Syosset, Garden
City,
Port
Washington, Massapequa, Patchogue, Hicksville,
The LI
TRIO Speakers Bureau led by George Tietgen also spoke in
front of
students and professors at
Over 9000
students have seen and heard the presentations, which
focus on
the need for organ donation and the clarifications and
corrections
of various organ donation myths while transplant
recipients
speak about their true to life stories of
transplantation.
The areas
covered consist of:
• Intro of
speakers and why we are
present
• Short VHS
video presentation that
discusses the need for,
procedures
for and state of organ donation in the
• Printed
materials are handed out and “giveaways”
are used to
create an
interactive atmosphere throughout the period.
• Discussion
of current facts about how
organ donation works,
and the
many benefits as well as complications and issues.
• Transplant
recipients speak about
organ donation in general
and tell
about their personal experiences with transplantation in
particular.
• Open
discussion, question and answer
session.
• Students
complete a questionnaire
about the program inclusive
of what
they liked, disliked, as well as what (if anything) should
be
changed or added to the program.
We close
by requesting that the students take home the printed
materials
and have a discussion with their parents or guardians
about
organ
donation.
Legislative
Initiatives:
2007 in
review and looking forward to 2008:
Congress
passed legislation clarifying that paired kidney
donations
are legal and that finally paved the way for a
national
registry for paired kidney living donations.
There are
now 150 co-sponsors for the Kidney Care Quality
and
Education Act HR
1193
As
reported by litrio.org, there are now 50 co-sponsors for
legislation
that would extend immunosuppressive drug
coverage
for the life of arenal transplant (HR
3282) and that
bill as
well as the Senate’s nearly identical companion bill
are in
committee although Congress is on vacation. The
Senate
was in pro forma session every day during the
holidays.
Long
Island TRIO believes that all transplant recipients’
immunosuppressives
should be covered by insurance
(Medicare).
**
HR
3282- To amend title XVIII of the Social Security Act
to
provide continued entitlement to coverage for
immunosuppressive
drugs furnished to beneficiaries
under
the Medicare Program that have received a kidney
transplant
and whose entitlement to coverage would
otherwise
expire, and for other purposes. This bill is
currently
on the agenda in the Subcommittee on Health,
Employment,
Labor, and Pensions.
**
In 2008
we will continue to provide support for the bills
involving
a congressional medal for all organ donors and
their
families.
We look
forward to also continuing to support funding for
living
donor assistance.
IN 2008
we will find new initiatives with respect to support for
programs
to encourage early identification of kidney disease
and to
educate primary care physicians with regard to early
intervention
and care of kidney disease.
Here’s to
a healthy new year as we advocate in 2008!
Michael
Sosna, President
www.litrio.org
mike@sosproductions.com