**** LI TRIO Website www.litrio.org
**** Special programs for people who do not have insurance coverage for medications
Long Island TRIO once again sends our heartfelt greetings to TRIO National, Jim, Sylvia, all national board members, and to all TRIO members and volunteers.
Long Island TRIO is pleased to announce that we have a new president. Our chapter's new president is Joy Oppedisano and we're pleased to have joy's expertise and dedication.
•Under the leadership of Jeff Fenn, our TRIO members are speaking in public and private high schools as well as colleges, universities, medical schools and hospitals. Our chapter's volunteers reached over 75,000 students to date with about 10,000 students reached annually and have a full itinerary ahead for next semester. The LI TRIO Speaker's Bureau is earning high marks indeed. Newsday media's "This Week Extra" published an article about Long Island TRIO and our chapter's Speaker's Bureau- High School and University Education Program.
Our chapter also announces the launch of our new school speakers program in Suffolk County under the leadership of Dave Rodgers. Here
, you will find some student comments providing feedback from the second of two visits to Islip High School. Over 500 students were reached so far. More at www.litrio.org
•Under the leadership of Dave Rodgers, and with his skills and devotion to our garden, The LI TRIO Donor Rose Garden looks wonderful as we prepare to present our chapter's most cherished annual event.
Our annual re-dedication of our “LI TRIO Donor Rose Garden” in Eisenhower Park on Long Island will be held on September 26, 2015. At this event we honor and thank Donors and Donor Families as we re-dedicate our “Long Island TRIO Donor Rose Garden” to Donors and Donor Families in a ceremony at our deeded Donor Rose Garden located in Eisenhower Park, East Meadow, NY in Nassau County- adjacent to Parking Field 6/6A. Donors and Donor families are indeed our heroes.
Our volunteers created this beautiful garden from scratch. We have adopted a portion of this; the largest park in all of nassau county and our chapter members under the leadership of Dave Rodgers personally and exclusively maintain the Donor Rose Garden that we designed and built in order to honor Donors and Donor Families. We are so pleased to welcome and honor hundreds of donor families at this annual event.
We will be presenting a special individual rose to each donor family in attendance as just one additional small way of honoring our heroes.
•Our chapter’s specific Legislative Initiatives at the New York State level:
We sat in on sessions in the New York Senate and the Asembly in Albany for Senator John Flanagan’s first day as Senate Leader on May 12, 2015. Senator Flanagan became one of three elected officials who control the NewYork State budget and the flow of legislation in Albany.
We created and sent 128 letters to members of the Assembly and Senators as well as the leaders of the Assembly and NY Senate.
•New York State Senate Bill S5313 was officially introduced to the Health committee on 13 May, 2015, the day after we had multiple meetings with the Senate Health Chair Senator Kemp Hannon and his professional legislative team in Albany. This bill allows New Yorkers age 16 or older who wish to consent to donate the ability to enroll in the New York State Donate Life Registry, while preserving the parent’s ability to give final authorization should the individual who is under 18 be considered for organ, eye or tissue donation.
•New York State Assembly Bill 7282 This bill is about instruction regarding organ donation and authorizes the commissioner of education to make materials providing information on organ donation available to all secondary school pupils in New York State. The bill authorizes instruction on organ donation to be taught to secondary school pupils.
•Senate- S5101-2015 and Assembly A7431-2015-Fixing Lauen’s Law- This law was passed. The purpose of these two bills is to ensure that when people are applying for a New York State drivers license they complete the section of the application relating to making an anatomical gift which requires them to check either “yes” or “skip this question”. There was a huge problem with implementation. Now, Section 1 amends section 4310 of the Public Health Law to remove language which allows an application for a driver’s license to be processed even if neither the “yes” or “skip this question” box is checked in the section relating to signing up as a organ donor.
Special thanks LI TRIO member Lauren Shields, a courageous young lady, friend, heart transplant recipient and donor advocate for whom the law is named. Lauren's Law, will require anyone applying for a driver's license to answer thew questions regarding organ donor registry enrollment.
Much improvement is needed in our region and New York needs many more enrollments in the Donate Life Registry.
•Our chapter’s specific Legislative Initiatives at the federal level:
•The Organ Donation Awareness and Promotion Act will authorize $5 million per year for the following programs detailed below, totaling $20 million per year. U.S. Senator Bob Casey announced that he has introduced new legislation, the Organ Donation Awareness and Promotion Act of 2015, to boost research into organ donation science and to increase awareness.
Read more here and you may visit www.litrio.org.
•Long Island TRIO supports The Living Donor Protection Act (HR 5263), sponsored by Representative Jerrold Nadler (D- NY) and Representative Michael Burgess (R-TX).
At this time, while living donors are considered heroes and have saved and extended lives, insurance companies have all too often flatly denied insurance coverage to living donors (in some cases immediately denying applications after the surgery question is answered), limited coverage to living donors, raised premiums (which has drastically affected living donors) and declined life insurance, disability insurance, or long-term care insurance applications submitted by living donors.
This bill will protect living donors from insurance discrimination. The bill also has provisions for the promotion of education with respect to living donation.
H.R. 5263 makes it unlawful for insurance companies to discriminate against living donors by declining insurance, terminating insurance, limiting coverage and charging higher premiums for life insurance, disability insurance, or long-term care insurance policies just because someone identified as a living donor and stated that they gave the Gift Of Life as a living organ donor.
Additionally, the bill clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from the transplant surgery.
While the bill is in committee discussions, LI TRIO will once again call on our friends and members to participate in our advocacy efforts by joining us in writing to our Members of Congress.
We have been working on letter writing campaigns in order to send letters to Members of Congress as we try to garner support and additional co-sponsors for this bill. We’ll publish more information on our chapter’s website at www.litrio.org inclusive of sample letters so if you so desire, you will be able to express your support for this bill.
•Each one of our LI TRIO General membership Meetings have a special program regarding Transplantation and related topics of interested to our membership. Thanks to Ed Burki, each meeting has a guest speaker and at times, Ed will book a panel of experts for some meetings. All of our meetings also have coffee and homemade cookies personally baked by our friend and LI TRIO volunteer Beth Chapman. I think many members especially look forward to the homemade cookies.
Our meetings are held at 145 Community Drive, Great Neck, NY. on the second Wednesday of each month with no meetings in December, July and August.
While we are looking for new members as an ongoing mission in order to constantly maintain and improve our chapter's roster of activities, our membership has remained stable for the past few years. We are hoping for and working toward more growth and want to add to our 140+ families that are members in good standing with paid dues to both the chapter and TRIO National.
•Our most recent Holiday Party was held at the beautiful and elegant Leonard’s La Dolce Vita of Great Neck on November 21, 2014. We had a choice of salmon, filet mignon and eggplant in addition to appetizers such as penne al vodka and a full course sit-down dinner with several other menu choices. The feedback has been wonderful and we were grateful to have been able to accomplish such an ambitious program while keeping the price of admission as low as possible with our chapter subsidizing a portion of the catering charges. We had new friends and old friends socializing together, dinner, dancing and music. Successful events come from effective and successful planning and we enjoy learning how to be even more effective every year. It takes many hard working dedicated volunteers to accomplish something like this and we are forever grateful to our volunteers and how they continue to strive for excellence.
•Long Island TRIO hit a home run for Organ Donation Awareness at Ducks baseball games and other athletic events for the past ten years where our singers performed our nation's National Anthem. This event helped bring more attention to the cause we all work toward; the need for organ donation in order to save lives. At the most recent game, there was a public service announcement at the beginning of each game and it described the need to save lives with Organ Donation and The Ducks made additional announcements about TRIO and our Organ Donation Outreach and Awareness efforts during the fourth inning of the baseball game.
•At this time, I would like to continue to offer information with respect to special needs Prescription Drug Resources. Some drug companies have special programs for people who do not have insurance coverage for medications and cannot afford their own. To get a list of these companies and what they require, please visit www.helpingpatients.org
or call (202) 835-3400.
You can also write to Pharmaceutical Manufacturers Association 1100 15th Street, NW, Washington, D.C. 20005.
The Together RX Access Card may help as well. The card can help uninsured patients get a 25-40% discount on over 275 prescription drugs. Visit www.togetherrxaccess.com or call (800) 444-4106. Our chapter’s volunteers will also offer specific discount cards again in the coming weeks just as we have done in the past. I hope these can be of help to as many people as possible.
Here's wishing you the very best in good health and happiness.
Mike Sosna, Director of Communications and Public Policy
June 14, 2015
TRIO-Long Island chapter