TRIO E-News
March, 2021
Distance
Greetings!

COVID-19 and 2021, your update?
As we settle in on this third month of 2021, we all need to live to see the day as more 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.

If you missed TRIO's recent message about the safety of the new J&J vaccine for transplant patients, you can view it here: https://conta.cc/2ZYPn5Z

Last issue we asked two simple questions. Here's what those who completed that poll told us in our early February COVID-19 Vaccine POLL:
But with these past 4 weeks of vaccination progress, now the BIG QUESTION is, what progress has been made? So we ask you again: by now has the vaccine been made available to YOU, and if it has, did you accept that invitation or not. Please complete this simple poll again and come see the results in our April issue . . .
Has the COVID vaccine been made available to you?
Yes, and we've been vaccinated (even if only only one shot)
Yes, but we've decided to not get it
Yes, but still undecided on getting it
No, but plan to get the shot(s) when it is offered
No, but don't plan to get vaccinated
No, but still undecided on getting it
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 to update transplant patients on developing news specific to our high-risk community.
Click on the banner above to check out the NEW TRIO Post-transplant Cancer awareness website at https://TRIOwebPTC.org raising life-saving awareness of the higher risk for cancers in transplant recipients, offering ways to safely live with that risk.
Note: Launch your own birthday, transplant anniversary, or other life event celebration event - or in memory of your donor or other loved one - 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
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.
people talking over pages
TRIO Advocacy

Part D Access, Revised Kidney allocation policy and UNOS Public Comment and Regional Meetings

The TRIO Public Policy report for March provides insights and details on these topics and ways that you can support the TRIO ADVOCACY mission with your actions supporting major issues. See a link to their March report below.

The Trump administration’s last-minute Medicare proposal would gut protections for patients with organ transplants. That’s why TRIO joined over 130 other organizations in urging the Biden administration to reverse the proposal and #ProtectPartD: https://bit.ly/3dMKNA1 See the committee's ACTION ALERT that follows for your call to action on this important issue.

UNOS Public Comment
The current UNOS Public Comment period on several proposals will remain open until March 23rd - add your comments at https://optn.transplant.hrsa.gov/governance/public-comment/

Read more and how you can help in the latest TRIO Public Policy committee report at:
A recent proposal from the Center for Medicare and Medicaid Innovation (CMMI) would allow health plans to scale back their coverage of drugs in Medicare’s six “protected classes” — a policy change that could jeopardize Medicare beneficiaries' access to medications that manage complex conditions such as cancer, mental illness, HIV-AIDS, epilepsy, Parkinson’s, and organ transplantation. Taking patients off
highly effective treatment regimens in favor of other medications can undermine adherence, resulting in hospital visits and other interventions that could have been avoided, as well as higher costs to Medicare.

TRIO continues working with the "Partnership for Part D access” and other organizations to prevent this proposal from taking effect. Please join us in preventing this change.

Social Media Information:
#Medicare’s six protected classes policy is an essential patient safeguard for beneficiaries of Organ Transplants. #TRIO Join us today in urging @JoeBiden to block a damaging proposal that would
undermine these key patient protections: https://bit.ly/3tVM9xN

>> Take two minutes today to urge
the Biden administration to drop this proposal <<

Clinical study opportunity for living donor kidney transplant recipients
 
If you plan to receive a kidney transplant from a living donor, (or you know of someone who is), you and your living donor may be eligible to participate in a research study called the FREEDOM-1 Study. The FREEDOM-1 Study is evaluating an investigational treatment that could potentially eliminate the need for anti-rejection drugs among living donor kidney transplant recipients.

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, TRIO Post-transplant Cancer webinars generously sponsored by CareDx in the months ahead.