TRIO Chapter Activity Report

Long Island Chapter - January 2008

I’m currently coordinating a Joint Press Conference with New York

State Senator Kemp Hannon and Long Island TRIO. The press

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 Holiday Party. Our Gift of Life and Re-

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

Citibank Park on Long Island. We have a confirmed date to sing The

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 Medicare Rights Center and you’ll find

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 Medicare Rights Center will be providing a free

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 Hackensack

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

Hackensack's coordinators are on call, can be paged with any

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 Mount Sinai Medical Center in New York, Dr.

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 Pacific School of Pharmacy in 1979.

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 Plainview High School.

The speakers also lectured at Mephan, Calhoun, Syosset, Garden

City, Oceanside, Port Jefferson Station, Schreiber High School in

Port Washington, Massapequa, Patchogue, Hicksville, E. Hampton,

Miller Place, and other Long Island High Schools.

The LI TRIO Speakers Bureau led by George Tietgen also spoke in

front of students and professors at Adelphi University in Garden City,

Hofstra University in Uniondale and Nassau Community College.

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 United States.

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

TRIO-Long Island chapter

www.litrio.org

mike@sosproductions.com