TRIO E-News
January, 2021
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Greetings!
COVID-19 and 2021
As we settle in on this new year of 2021, we all need to live to see the day when those vaccines become available and we can enjoy our freedoms again, so keep up following those CDC guidelines of masking and social distancing. Meanwhile, please keep in prayer those who are fighting the virus and those families who have lost loved ones to COVID19!
Meanwhile, stay informed by reading advisories/recommendations from your transplant team and registering for any of the many webinars that are being offered (see one below 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 registering for those webinars below, you will get the information you need to confirm your final decision.
2020 Donation/Transplant Successes
On the other side of those statistics, we can celebrate the fact that organ donations and successful transplants were set to track the same as 2019 (based on data available from UNOS through Nov 30) despite the many challenges brought on by the pandemic! And that's despite a slowdown in elective living donor surgeries.
Honor the Gift success and cautions
We can also celebrate the success of the Honor the Gift campaign in supporting passage, after 20 frustrating years of advocacy, that extends drug coverage for kidney recipient beyond that 36 month limit in past years. A special shout out to CareDx for their active and passionate support of the HTG campaign!
Two words of caution though, despite that final successful passage, benefits may not be seen by individual patients until fully implemented, forecasted to be 2023. Also, the benefit is driven by patient need, not just a free gift for all. You will have to prove that all other avenues of support are exhausted before this benefit kicks in. It's all in the fine print, as they say, but a major step in the right direction of helping those in need.
But "What about us?"
And to answer the question non-kidney transplant recipients are asking, NO, there is no coverage in that legislation nor plans for organ recipients other than kidney. Without the cost savings of avoiding expensive dialysis, there is no cost benefit to justify that coverage for hearts, lungs, livers, etc. that was the driving force behind this legislative victory for kidney patients. Of course, for those who qualify by virtue of age or otherwise, Medicare coverage remains unchanged as an important support source.
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Note: Launch your own celebration event with a Facebook funding campaign for TRIO using this link:
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Sincerely,
Jim Gleason
TRIO President
(609) 877-4493
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Texas TRIO Chapter's Amy's House
receives its first guests
You saw their official opening in an earlier newsletter and website a few months ago. Well, here’s their first guests to stay at TRIO’s family house, Amy’s house. Amy, was this chapter’s president’s daughter who upon her young death, donated her organs in 2012. Click on the image above to watch this short TV coverage of that milestone event.
Our congratulations goes out to this Texas chapter for the culmination of years of passionate hard work. See their ribbon cutting here:
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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.
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.
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On behalf of Dr. Amy Waterman, TREC and the Terasaki Institute for Biomedical Innovation we invite you to this upcoming event:
(Note: two TRIO members will be representing you on the patient panel)
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Feelings of depression and anxiety are often experienced by transplant patients and caregivers due to the toll that the transplant process can have on their lives. Seasonal changes, shortened daylight, and the pandemic can also have a major impact on emotional wellness.
Dr. Sarah Gulick, Psy.D. will discuss the impact of depression and anxiety on individuals going through transplant/chronic illness and practical techniques and coping skills through ACT (Acceptance and Commitment Therapy) to support and strengthen overall emotional and mental health.
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2021 is here and with COVID-19 vaccines being distributed and administered, there are many questions arising from the transplant community. The COVID-19 Transplant Community Coalition is excited to present its second webinar to inform and provide valuable information about the vaccines. The webinar content will be shaped entirely by your input. So share with us your most pressing questions about the vaccines as a member of the transplant community.
Your questions will be answered by leaders in their respective fields including:
· Dr. John Mascola, Director, Vaccine Research Center, National Institute of Allergy & Infectious Diseases, NIH
· CAPT Janell Routh, MD, MHS, Co-Deputy, Implementation Unit, CDC COVID-19 Vaccine Task Force
· Leilani Graham, heart transplant recipient, patient advocate, healthcare consultant
Steve Adubato, PhD (Moderator), Emmy award-winning Anchor, Author, "Lessons in Leadership"
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2023 World Transplant Games Awarded to Perth, Australia
The World Transplant Games Federation (WTGF) yesterday announced that Perth, Australia, would host the 23rd World Transplant Games on April 15 to 21, 2023.
The World Transplant Games will bring up to 3,000 transplant athletes, their families and supporters together for a week celebrating the ultimate gift – the gift of life.
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TRIO Advocacy
See the latest TRIO Public Policy committee report at:
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After five years in development:
TRIO launches 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.
Click 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.
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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 world wide.
ALSO: See next month's E-News for announcement of an upcoming Post-transplant Cancer webinar generously sponsored by CareDx.
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TRIO Transplant Presentation Library
NEW programs added . . .
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