TRIO National 
Member E-News  
January 2020
Inspiring transplant news for :  
"TRIO wishes you and your family the  
healthiest and happiest new year 2020!"
And yes, this is what its all about!
click on her photo for the full story
It's a true Christmas miracle: A new heart for 5-month old Ruby.
Enjoy January's articles to learn more about:
  • (above) Ruby''s new heart story 
  • PAF financial support
  • CareDx support for patients
  • Honor the Gift campaign exciting update
  • UNOS National Donor Memorial virtual reality tour
  • Invitation to a PTLD (ie., blood cancer) AtaraBio clinical trial
  • Living organ donation on the rise
  • US Transplant Games & a . . .
  • TRIO first hand report on the 2020 Games 'American Dream' venue
Important reminder:  
TRIO's national office has moved with new contact information
(as repeated at the bottom of this E-News and our TRIO web site pages), staffed by Executive Director, Gary Green: 
TRIO president
(609) 877-4493
With the new year come new deductibles
- shared by TRIO board member, Lorrinda Gray-Davis

     January deductibles are approaching fast and many transplant recipients go through obstacles obtaining medication at an affordable cost. I want to share my recent experience in changing medical insurance from commercial insurance to Medicare Part D Prescription insurance.
TRIO's Lorrinda Gray-Davis

     Most pharmaceutical companies have a coupon co-pay card for use with commercial insurance which does not apply to Medicare. The pharmaceutical company and I were working to see if I could get the Part D prescription drug coverage insurance company to re-classify the drug below Tier 5 to reduce the amount of the prescription.

     The pharmaceutical company representative had me go to the Patient Advocate Foundation (PAF).  During this hour-plus call I filled out the information requested and was approved within twenty (20) minutes and received a $4000.00 grant to cover the cost of medication, doctors, and other services related to the disease. The Patient Advocate Foundation will send the information to your doctor for verification and you can start using the grant immediately.

"TRIO thanks CareDx for their years of supporting TRIO
both locally and at the national level
for their pioneering work for the transplant patient"

Click above to learn more . . .
CareDx press release: Dec 23rd
"The Comprehensive Immunosuppressive Drug Coverage for Kidney Patients Act was introduced in the House of Representatives today!"

Finally in 2020: It's time to ensure Medicare coverage of immunosuppressive drugs for kidney transplant patients.

Honor the Gift campaign update:
     The House Energy & Commerce committee is planning to hold a legislative hearing their first week back (Jan. 8) and they would like to include our legislation for consideration.
     We are waiting until after the holidays to do an aggressive communications and advocacy push, but we wanted to share the good news with everyone here. We will be posting this update to Honor the Gift's social channels tomorrow - we encourage you all to share these posts to help bring attention to this important milestone.
     Thank you all again for your continued support of this coalition. We'll follow up in the next week or so with more guidance on our call to action starting in January.

YOU can join the fight by clicking on the image above to join CareDx and 8,000 others who have signed the pledge to support their Honor the Gift campaign.
If you haven't had the chance to visit in person:
UNOS National Donor Memorial virtual tour offers online visitors a 3D experience

You can now enjoy an interactive tour with virtual reality capability
from your home

click above image to learn how to take the virtual 3D tour

       Since its dedication in 2003, the National Donor Memorial located at the United Network for Organ Sharing headquarters has honored America's organ and tissue donors. Over the years it has attracted thousands of visitors to Richmond, Va.-from local schoolchildren to travelers from around the world-who come to visit the garden, tour the UNOS campus, and be inspired to follow in the footsteps of so many by choosing to give the Gift of Life.

     Now you can remotely visit the National Donor Memorial through a new online virtual tour. The 3D National Donor Memorial experience allows virtual visitors to explore and enjoy the memorial site from anywhere in the world.  The tour can also be downloaded and viewed in virtual reality on your cell phone with Google Cardboard or a Samsung VR headset.
Know someone dealing with PTLD?
(that's Post-transplant Lymphoproliferative Disease)
. . . an invitation to participate in a clinical trial

Post-transplant lymphoproliferative disease (PTLD) . . .  
     is a type of cancer or lymphoma that may occur after bone marrow or organ transplant. A patient who receives a transplant must take medications to suppress their immune system (immunosuppression) so that their body will not reject the new bone marrow or organ.

When the immune system is suppressed, it is easier to become sick. Sometimes when a transplant patient is infected with Epstein-Barr virus (EBV), the virus may cause a serious cancer or lymphoma known as PTLD.

EBV is a common virus that infects over 90% of people in the world. For most healthy people, it causes common cold like symptoms and then stays in your body but is completely controlled by your immune system, so you don't have any further symptoms after the initial infection. If a person has a suppressed immune system, the EBV can activate and cause an uncontrolled growth of cells in the patient's lymph nodes and other organs. When abnormal cells multiply out of control, it may result in cancer.

PTLD is a common cancer after transplant but is still considered a rare disease that only occurs in a small percentage of transplant patients. Rates of PTLD cancer are higher for people who have types of bone marrow and organ transplants that require higher levels of immunosuppression.

If you or someone you know is facing the challenge of PTLD, please accept an invitation from AtaraBio to look into a promising clinical trial that might be helpful.  Click on AtaraBio clinical trial to learn more.
Living Donation: Learn more about this
life saving option

The number of living donor transplants in 2018 represented the highest total since 2005, increasing nearly 11 percent over 2017. Here, one of the individuals contributing to the rising trend discusses making the decision to donate. 
Patrick Kacani discusses making the decision to donate a portion of his liver to a friend from college.
US Transplant Games to be held at the new 'American Dream' complex: July 17-22, 2020

"TRIO will be there.  Will you ?"

Jim and Bill at the just opened indoor ski slope

TRIO Philadelphia's Bill Soloway and Jim Gleason did a scouting trip to the games' "American Dream" new huge venue, both residents of New Jersey excited to see how the site was progressing. 

While much is yet to open, most due in the next few months in time for the July Games, you could ski and go on the rides that have just opened.  Here we are at the base of their 1,000 foot ski slope with fresh snow that is kept pristine at 28 degrees - imagine going skiing in that come a hot July here in New Jersey!

at the Nickelodean Universe ride park

click image for Games details
More than 15,000 people are expected at next year's Transplant Games of America July 17-22 at the Meadowlands in northern  New Jersey.  
The Transplant Games are open to transplant recipients and living donors, and for the first time in 2020 donor families can participate in four events! We're told hotel room blocks will open soon, and the search is on to fill 4,000 four-hour volunteer shifts. TGA is signing up volunteers now.  
TRIO will be in New Jersey and hosting educational opportunities and "meet and greets" for TRIO members and new member sign-ups. Stop by for your special gift!

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