TRIO E-News
February, 2021
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Greetings!

COVID-19 and 2021, your update?
As we settle in on this second month of 2021, we all need to live to see the day when those vaccines become available and we can enjoy our freedoms again. With each state rolling out the vaccines differently, both in distribution priority and process, more and more of us are being invited to get their vaccination shots.

BIG QUESTION, has the vaccine been made available to YOU, and if it has, did you accept that invitation or not. Please complete this simple poll and see the results in our March issue . . .

COVID-19 Vaccine POLL:
Has the COVID-19 vaccine been made available to you?
Yes
No, not yet
If answer above is YES, did you (or will you) accept that shot?
Yes
No
In any event, keep up following those CDC guidelines of masking, isolation, and social distancing. Also, please keep in prayer those who are infected and fighting the virus, those families who have lost loved ones to COVID19, as well as for those on the front line supporting us!

Meanwhile, stay informed by reading advisories/recommendations from your transplant team and registering for any of the many webinars that are being offered (see two below, the first with TRIO members on its patient panel) updating transplant patients on developing news specific to our high-risk community.

Vaccine Intention polling responses
And the results are in from our earlier E-News issue asking readers to share their intentions about taking the vaccine when it becomes available (which is also the subject of some of those webinars listed below).
As of late December, patients responded as:
("Drum roll, please!")
> Yes (will take the vaccine): 62.3%
> No: 11.5%
> Maybe, but have concerns: 26.2%

Thank you for sharing your intentions if you responded to that survey! We hope that by registering for webinars as listed below, you will get the information you need to confirm your personal decision when the vaccine is offered to you.

Read the article below to see what TRIO is doing to raise awareness of increased risk for cancer post-transplant.
Note: Launch your own celebration event with a Facebook funding campaign for TRIO using this link:

Sincerely,
Jim Gleason
TRIO President
(609) 877-4493
In-home blood draw service offered by CareDx

    In response to the COVID-19 crisis, CareDx launched RemoTraC: Home-based blood draws for transplant patients. RemoTraC is available to all patients who want their transplant monitoring lab tests to be drawn from the comfort of their home by trained mobile phlebotomists. RemoTraC includes AlloSure and/or AlloMap, CareDx's surveillance tests, along with a panel of routine tests.

    Patients can sign up for RemoTraC through an easy to use webpage: www.caredx.com/remotrac.

    Once enrolled in RemoTraC, a CareDx Patient Care Manager will coordinate with your transplant center and contact you by phone to schedule an appointment. Prior to the appointment, we will mail you a test kit. A licensed mobile technician will then come to your home, take a blood sample, and deliver the sample to the lab for processing. CareDx will fully cover the cost of the mobile phlebotomist, and will ensure you pay no additional out-of-pocket expenses beyond what you typically pay for these tests.

TRIO thanks CareDx for the many ways they support our mission.
Click on the banner below to view
"Our Transplant Journey"
A Newsletter for the Transplant Community by CareDx

This Feb 3rd issue features:
  • The Most Important Topics to Talk to Your Kidney Doctor About After a Transplant
  • Getting Important Blood Draws from Home—All Your Questions Answered About RemoTraC™
  • Patient Profile: How Kevin Schnurr Honors His Gift of a New Kidney
  • Recipe: Avocado Dip + Stuffed Peppers with Rice and Beans
  • Webinar: COVID-19 & Vaccines for Transplant Recipients: What We’ve Learned So Far and What to Expect in the Coming Months
Lyfebulb and TRIO Announce Partnership on Digital Engagement Platform for Transplant Community

NEW YORK, Feb. 3, 2021 /PRNewswire/ -- Patient empowerment platform, Lyfebulb, and TRIO (Transplant Recipients International Organization) announced today their partnership to provide the transplant community with the support they need during their journey. 

Lyfebulb recently launched TransplantLyfe, which enables community members to make connections to each other, share stories, participate in Q&A forums, access information through vetted resources and create journals to track biometrics and other health measurements over time.

Through this partnership, TRIO members will be able to directly link to the TransplantLyfe site from the TRIO website and engage with an international group of transplant patients, care partners, donors and other interested parties. Similarly, TransplantLyfe members will have access to TRIO's expert resources on the TransplantLyfe platform. Together, Lyfebulb and TRIO will create new content for the community in the form of webinars and other online events, engaging both the TRIO and Lyfebulb communities.

"TRIO is proud to partner with Lyfebulb in supporting the growth of TransplantLyfe," said Jim Gleason, President, TRIO National. "We hear time and again from our community that people are searching to find someone who has gone through this journey before. But there are only around 39,000 transplants done in the US in one year – it is hard to find these patients."
Note: When you register your USERNAME in signing up for TransplantLyfe, append the characters '-TRIO' so that this community sees you are from TRIO in your postings. (as in MyUserName-TRIO)
"Did you miss this year's Rose Parade?"
Check this unique 2021 Donate Life float display . . .
The 2021 Donate Life Tribute to the Rose Parade:
"Community of Life"

Since 2004, the Donate Life Rose Parade® float has inspired people across the country and around the world to save and heal lives through the powerful message of organ, eye, and tissue donation. As a tribute to 17 years of float participation in the Rose Parade, the Donate Life community will feature a beautiful and symbolic floral sculpture, which will be displayed in Pasadena on New Year’s Day. This sculpture was featured in a two-hour TV entertainment special on January 1, 2021
On behalf of Dr. Amy Waterman, TREC and the Terasaki Institute for Biomedical Innovation we invite you to view the recorded event now available in the TRIO Transplant Presentation Library:
(Note: two TRIO members represented your questions on the patient panel)
And now with COVID-19 vaccines being distributed and administered, there are many questions arising from you and the transplant community. The COVID-19 Transplant Community Coalition was excited to present this webinar to inform and provide valuable information about the vaccines.
Team USA Update
Learn More About the 5K AnyWay!

"Are you really missing being outdoors? Do you feel like you would like to get this part of your life started again?"

Then consider participating in the 5K AnyWay! The 5K AnyWay is a virtual participation event in which participants from all over the world complete a 5K distance any way they like at their own pace and at their own chosen time between May 28 and June 5, 2021. Participants will walk, run, skip, swim, bowl, bike or whatever activity they want to do for 5 kilometers (about 3 miles). It's your choice!
This virtual global event is being staged with the hope of virtually uniting transplant survivors, donors, their families, and supporters from around the world. Collectively, we will virtually travel around the entire globe together. 
A Zoom session is being presented by the Harris County (Texas) Sports Authority, the event’s organizer, on February 10 at 8 PM Eastern/7 PM Central/5 PM Pacific to explain the event and all of the associated activities. To register for the Zoom session, click: here.
After registering, you will receive a confirmation email containing information about joining the meeting.
See you on February 10!

If you have any questions regarding Team USA or the 5K AnyWay, please contact us at teamusa.worldgames@gmail.com!
TRIO Advocacy

Last-Minute Trump Regulation Would Gut Medicare Patient Protections
On their final day in office, the outgoing Trump Administration announced a new proposal that would undermine key patient protections in Medicare’s prescription drug program. In a proposal for an updated Medicare demonstration project, the administration is proposing to allow Part D plans that participate in the Innovation Center’s “Part D Payment Modernization (PDM) Model” to limit the drugs they cover, including denying patients access medications in the “protected classes” that are used to manage complex medical conditions including immunosuppressed transplant recipients.
Read more and how you can help in the latest TRIO Public Policy committee report at:
Transplant Games of America letter announces
'Reformatted Games' for 2021
Greetings,
 
We hope you are having a safe and healthy start to the new year. COVID-19 continues to affect every community including our immunosuppressed population. Despite these challenges, the transplant community has remained resilient and hopeful, and planning for the Transplant Games has continued with the safety of our community as our number one priority. In December 2020 when the Pfizer and Moderna vaccines were approved there was optimism that we would reach herd immunity in early 2021. However, the rollout of the two vaccines has not gone according to plan, and in light of the current vaccination status we have decided to restructure the Games. We feel the new format will protect participants while at the same time help meet our goal to highlight the critical need for more organs in the vast New Jersey/New York metropolitan area.
 
With a 30-year history of successfully promoting organ, eye and tissue donation, and a restructured program ensuring the safe participation of our attendees, we are confident that the 2020 Donate Life Transplant Games will still shatter all records for participation, media exposure, education, and awareness. 

The Transplant Life Foundation will not waiver from its mission – this July the Transplant Games will “Honor the Journey… Coast to Coast”. The reformatted Games will take place in hometowns all across the country, providing the Transplant Games of America with a unique opportunity to reinforce our mission.  
continued . . .
After five years in development:
TRIO has launched its PTC Website to save lives
(PTC: Post-transplant Cancer)

Most transplant patients don't die from organ rejection, rather it's a sad story of cancer causing so many premature lost lives post-transplant, many of which can be prevented if diagnosed early and treated before spreading. But too often transplant recipients aren't aware of their higher risk for cancers and thus miss the life-saving early treatment opportunity.

As I asked Steve, "So what do you expect we can do about CANCER!" . . .

As a result of that sad phone call sharing the loss of a TRIO member to cancer, TRIO identified and took on the challenge of raising awareness for this higher risk with board approval to develop resources addressing that issue. The result, after five years of design, research, collecting the facts, engaging a medical faculty, was the creation of this patient educational website resource. With 46 fact and action-filled content pages, learning reinforcement quizzes and videos, organized around the '4 L's' of
> LEARN (the risk factors),
> LOOK (for symptoms),
> LIVE (a proactive life facing cancer) and finally,
> LINKS (to more PTC resources),
. . . we are supporting your local transplant teams (always your primary source of advice) with this unique resource hopefully extending your longevity post-transplant, leading a healthy and active life.

Come and join the over 245,000 visits already by clicking on the 4-L's image below (or enter HTTPS://TRIOwebPTC.org in your browser) to start your journey into a world of life-saving post-transplant cancer text, videos and quizzes, along with patient videos of successful dealing with cancer.
A special thanks to our Patient Advisory team who performed careful reviews four times over recent months, catching typos, grammar errors, and overall, in many ways to improve the patient experience with this website. "You really made a difference!" - JimG

PS: Please share this PTC link and resource with your personal network and transplant team as we launch a major promotional to make this available worldwide.

ALSO: See next month's E-News for the announcements of not one, but two, Post-transplant Cancer webinars in April generously sponsored by CareDx.
TRIO Transplant Presentation Library
NEW programs added . . .