Greetings from the Long Island chapter of TRIO
Here is an update on some of the activities of our chapter.
Long Island Chapter Report- August 3, 2007
By Mike Sosna
Organ and tissue donors are living proof that
death can bring life, that sorrow can turn
to hope, and that a terrible loss can
somehow become the greatest gift of
all. Every day they lead us on a journey of
hope, grace and appreciation of the
most wonderful gift; the gift of life.
The Long Island TRIO Donor Rose Garden
and the Annual Re-dedication Ceremony
were established to honor all Organ and
Tissue Donors and their families.
Please join us in honoring and thanking Donors and Donor
Families as we Re-dedicate our LI TRIO Donor Rose Garden in a ceremony
being held on September 8, 2007 at 1 PM in Eisenhower Park, East Meadow,
Women’s Sports Pavilion, Parking Field 6/6A. Lunch will be served.
Please make an effort to mark your calendars and attend this event. This
ceremony is our chapter’s most important and most cherished event of
the year
and our chance to thank our Donors and Donor families.
July 29th 2007
Long Island TRIO raised awareness for the importance of
kidney health and
organ donation at Shea Stadium on July 29th 2007.
The Long Island TRIO Singers performed the National Anthem on the field
at
Shea Stadium at this very special event promoting kidney disease
awareness
and organ donor awareness. The LI TRIO Singers performed at "Shea
Stadium"
performing the United States of America's National Anthem at New York
Mets
games on July 29, 2007, May 24, 2006, August 2, 2005 and July 21, 2004.
The
New York Mets won every game where TRIO performed.
The LI TRIO Singers are appearing at a variety of sports and
entertainment
venues including "Madison Square Garden" and "Shea Stadium".
We are demonstrating that transplant recipients are active, productive
people
and we are raising awareness of the need for organ donation.
July 2, 2007:
The LI TRIO Singers also performed the National Anthem at
Citibank Park at the
Long Island Ducks baseball game on July 2, 2007. LI TRIO was
represented by
over fifty recipients, donors, caregivers, family and friends who
attended the
game as part of our group and in support of the LI TRIO singers and
Organ and
Tissue Donor Awareness. When it was time to sing on the field, there
was an
announcement made that proclaimed the urgency and importance of Organ
and
Tissue Donation as well as the current statistics with respect to the
transplant
waiting list. Long Island TRIO arranged for
New York State Assemblyman Jim Conte (who is a two time kidney
recipient) to throw out the ceremonial first pitch while an additional
announcement over the public address system explained the importance of
organ and tissue donation and encouraged fans to let their families
know about
their wishes to become donors.
Long Island TRIO is pleased to announce the following additional events
for this quarter:
July 24th: Gift of Sight Night at Shea Stadium-Tuesday,
July 24th at 7:10 PM.
July 29th: Kidney Disease Awareness Day at Shea Stadium-Sunday, July 29,
2007 at 1:10 PM with The LI TRIO Singers performing the
United States of
America's National Anthem at New York Mets game.
August 5th: LI TRIO members are volunteering at the New York City Half-
Marathon- assisting at the second annual NYC Half-
Marathon taking place on Sunday August 5
September 6th - Kidney Walk Kick-off Luncheon on Thursday, September
6th,
from 12:00 noon to 1:30 pm, at the Hilton New York (6th Avenue and 53rd
Street.
This will prepare us for the Sunday, October 21, 2007 Kidney Walk at
South
Street Seaport, NYC.
September 8th: LI TRIO Donor Rose Garden Ceremony-Please join LI TRIO
in honoring and thanking Donors and Donor Families as we Rededicate our
LI
TRIO Donor Rose Garden in a ceremony being held on September 8, 2007 at
1
PM in Eisenhower Park, East Meadow, Women’s Sports Pavilion, Parking
Field
6/6A. Lunch will be served.
September 16th: Long Island TRIO Re-birthday
and Gift of Life Event at Winthrop University Hospital at 10:45 AM.
Live band
playing great music, a special guest physician speaker, recipients
lighting
candles in honor of each recipient’s transplant anniversary, and lunch
will be
served. Event is being held from 10:45 AM—3:00 PM.
Admission is Free
September 19th: Our Monthly Meeting- On September 19, 2007 we will have
our
General Membership and Annual Business Meeting at the same location in
Room 3 at 145 Community Dr., Manhasset, NY.
****
I provided the following information to our members this summer and I
hope this information can be useful to you and/or your members as well.
LI TRIO Medicare Information-Medicare Part D
What do you do if you’re among the up to 7 million Part D
beneficiaries estimated
to have exceeded the initial $2,250 benefit and have fallen into the
coverage
gap?
How do you pay for the next $2,850 in prescription drugs to get
out of the hole? So far, very few insurance carriers offer insurance
coverage for
the doughnut hole.
More insurers may offer similar coverage during the next open
enrollment period
for Part D, in November. But until Congress or more insurers provide
relief from
the gap, you’re on your own, paying full price for your drugs (along
with your
premiums once the initial limit is reached) until you’ve been credited
for $5,100.
You may find some help from the New York-based Medicare Rights Center,
800-333-4114 or www.medicarerights.org
On the Web site, scroll down to “Discount Rx Resources.”
Outside New York, call your State Health Insurance Assistance Program
(SHIP).
Discount prescription resources are fine and dandy but please remember
that if
you purchase prescription medications from sources other than Part
D-approved
pharmacists (such as from Canada or drug company patient-assistance
programs) you may save money but your purchases will NOT count toward
the
$5,100 to get out of the hole. The Medicare Rights Web site also lists
prescription
drug assistance programs available in 34 states and their eligibility
rules.
New York’s EPIC program, is generous, but backward in that it does not
cover
disabled people under the age of 65 who are otherwise eligible for
Medicare and
Part D. Part D participants with annual incomes below 150% of the
Federal
Poverty Level (FLP) who meet certain asset limits will be eligible for
the Low
Income Subsidy that covers most of the out-of-pocket expenses.
The assets limit makes this assistance unavailable to some Medicare
recipients
with modest savings. Some patient assistance programs will help
individuals
enrolled in Part D if they are not eligible for the Low Income Subsidy.
In 2006, the
Office of the Inspector General the Department of Health and Human
Services
gave the opinion that it might be illegal for drug companies to offer
patient
assistance programs to people on Medicare since they were now eligible
for the
Medicare Part D drug plans.
Many drug companies announced they would not consider Medicare patients
to
be eligible for their PAPs. Some companies discontinued PAPs. Some drug
companies have now made the decision to make Medicare patients eligible
for
their programs, others will accept even those enrolled on Part D, and
still other
companies are continuing to exclude all Medicare patients. One month
ago the
Office of the Inspector General the Department of Health and Human
Services
(the same office that said the opposite in 2006) said that there were
no legal
barriers to Medicare participants, even those enrolled in a Part D drug
plan,
being offered assistance through PAPs. People who need assistance and
have limited income and assets should take the time to look into
discounted or
free medications at sites sponsored by the drug industry and individual
drug
companies.
Long Island TRIO suggests the following four resources:
www.helpingpatients.org,
888-477-2669
www.rxassist .org
www.needymeds.com
uneedpsi.org
Additionally, every state has a program that provides free
counseling (to those
enrolled in Medicare) regarding health insurance including the Medicare
Part D
drug programs. These agencies known as SHIIPs (State Health Insurance
Assistance Programs) or Senior Health Insurance Information Programs
provide
free, unbiased information and assistance.
You can check out http://www.shipusa.org/Find_a_State_SHIP.html to find
your
SHIIP. They will provide you one-on-one or over-the-phone assistance
with
Medicare problems including MedicarePart D.
You may also call 1-800-MEDICARE to get the contact information with
respect
to your local SHIP.
Here is the New York State SHIP information:
Health Insurance Information Counseling and Assistance
Program (HICAP) New York State Office for the Aging 2 Empire State
Plaza Agency Building 2 Albany, NY 12223-1251
http://hiicap.state.ny.us/home/welcome.htm and call 800-333-4114
Lastly, you may also check out
http://www.medicare.gov/pdp-basicinformation.asp for useful Medicare
Part D information.
By: Mike Sosna
LI TRIO- June 2007 Meeting
LI TRIO was pleased to host Dr. Butt as our special guest
speaker at our June meeting.
Dr. Butt is a special friend of our chapter and serves as Chief of
Renal Transplant
Surgery at Westchester Medical Center. WMC is home to one of the
largest Kidney
Transplant Programs in the Northeast and has performed more than 1800
kidney
transplants. Dr. Butt also serves on numerous boards including the
National Kidney
Foundation. He has also published findings and technical papers
reflecting his
conclusions from multi-center, open-label studies.
Dr. Butt was pleased to see a broad spectrum of transplant recipients,
donors, donor families and caregivers present at our meeting. He also
commented about the positive development; that is where husbands are
donating to wives in the same manner as wives are donating to husbands.
Historically, this was not the case. With respect to spouse donations,
for decades many wives donated to husbands but not many husbands were
donating to their spouses. This is ironic because when a woman gave
birth to more than three children, she was at a disadvantage as a renal
donor because there were certain antibodies present. Today, this is no
longer an issue due to technological accomplishments and medical
breakthroughs.
I had mentioned Dr. Thomas Starzl with respect to a news item discussed
with
the membership. Dr. Butt graciously told our group about Dr. Starzl’s
book- “The
Puzzle People: Memoirs Of A Transplant Surgeon” (University of
Pittsburgh
Press, ISBN-10: 082293714X ISBN-13: 978-0822937142) and it’s a very
interesting book.
Preemptive transplant
When a qualified and suitable living renal donor is available, the
person who reaches ESRD (End Stage Renal Disease) may want to consider
having the kidney transplant rather than having to go on dialysis. This
is called a preemptive transplant. Today, preemptive transplants have
the best success rates with respect to patient and graft survival.
This is another important development with regard to kidney disease and
transplantation. Years ago it was rare for a person with kidney disease
to have a kidney transplant before beginning dialysis. It makes sense,
however, for the person to be as healthy as possible before transplant
surgery so this is something for which transplant centers should and do
consider. I did not have dialysis before my renal transplant on July
18, 1995 and I was surprised that my case was the exception to the rule
at the time and medical staff actually insisted on preparing me for
dialysis the night before my transplant surgery. Luckily, transplant
patients/recipients are very much involved with our medical care and
after communicating to several physicians that I was not to be
dialyzed, they listened to my comments and all was well. Today, it is
known that a preemptive transplant; that is, a kidney transplant where
the recipient has not been on dialysis is desirable.
In fact, it is even possible to obtain a deceased donor kidney
transplant before having actually started dialysis. In the United
States, one can usually be evaluated as a potential kidney transplant
recipient within the 2-3 year period before one would be expected to
start dialysis or reach ESRD. If one is evaluated within that
timeframe, credit for waiting time on the waiting list begins when the
person has reached 20% kidney function (more precisely, a GFR of less
than 20, as per a rule change implemented by UNOS in 1998). Since
dialysis is typically started when GFR is about 10%, it is therefore
possible to obtain a deceased donor kidney transplant before having
actually started dialysis.
Prevention of Kidney Disease
A huge goal of course, is to prevent kidney disease where it is
possible to do so. Kidney disease is caused by several factors
including diabetes (blood glucose levels must be checked), genetic
disease (such as PKD), obesity and elevated blood pressure
(hypertension). As an example, if one has high blood pressure and it is
detected and diagnosed early, the hypertension can and should be
treated and controlling the blood pressure level will protect the
kidneys. Today, over fifty million people (and that includes only those
we know of) suffer from hypertension. Blood pressure levels should be
checked often.
Other topics included, the controversial change with regard to the
allocation of kidneys-LYFT, Arterio-veinous fistula as the best option
for hemodialysis patients (even though many patients like a catheter,
the earler the fistula is put in, the better quality of life and less
infection in the long term), and the preference of preemptive kidney
transplantation as indicated above. With regard to a fistula, a fistula
is really just a vein (near the surface of one’s lower or upper arm,)
that has been connected to an artery by a vascular surgeon. It requires
surgery in the patient’s arm (usually in the non-dominant arm, in a day
surgery setting). Because a fistula needs time to develop and to be
exercised before it can be used, fistula surgery should usually be
scheduled approximately six months before the date dialysis is expected
to be required. It's not too early to have it all set a year before one
expects to begin dialysis.
Contrary to popular misconception, there is no advantage of trying to
delay dialysis
even if no symptoms of renal failure are felt once kidney function
(glomerular flitration rate) reaches about 10%, and there may in fact
be significant disadvantages for the patient in terms of mortality and
morbidity. Just as it is best to begin dialysis before the person feels
very ill, it also well settled that it is best to schedule a transplant
(when a qualified and suitable living renal donor is available) as soon
as possible while the person is feeling as healthy and strong as
possible.
Dr. Butt had much to say and offered kind words about our Long Island
TRIO chapter as well as compliments with respect to our monthly LI TRIO
Update Newsletter. We very much appreciate his time, his expertise, and
the wonderful presentation and discourse he brought to our meeting.
Respectfully sumitted by Mike
Sosna mike@sosproductions.com
August 3, 2007
With warm regards,
Mike Sosna,
President
Email:
mike@sosproductions.com