TRIO National 
Member E-News  
July 2019


"We wish you a . . ."
4th-july-header2.jpg
 
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Our TRIO Transplant Presentation library  of over
100 videos on YouTube has a new
way to see the topics and link to each program with a 'live linked'
 downloadable index . . . 
Just click below to check it out at: 
 
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Honor the Gift Coalition report below . . . 
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Katherine's 'It takes a village' campaign supporting TRIO
and you can still help
with your donation and by sharing her appeal with your own family and network - she's raised $5k+ to date 
Note: GFM tally doesn't show the additional $2k raised outside that platform 
go to Katherine Egan's GoFundMe campaign  
and join me in pushing her over the top
and helping TRIO!
"Thanks so much, Katherine!" 
Click on image to see full story
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PTC (Post-transplant Cancer) Site progress 
  (click on http://TRIOwebPTC.org to see latest updates,
especially in the PTLD page with its new downloadable TRIO Fact Sheet and clinical trial information)
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TRIO president
            GleasonJim@aol.com
(609) 877-4493
Celebrating my 25th year with a VERY successful heart transplant
thanks to Roberto Cuebas,
my heart donor:
    
"TRIO thanks CareDx for their years of supporting TRIO
both locally and at the national level
and
for their pioneering work for the transplant patient"

. . . and see their sponsorship for the 'Honor the Gift' campaign in the later article below . . .

Click above to learn more . . .

Summer's is now here:
"Time to repeat this advice on skin cancer prevention . . ."
- National Cancer Institute (NIH) best practices:

   
 
The sun, sunlamps, and tanning booths all give off ultraviolet (UV) radiation . Exposure to UV radiation causes early aging of the skin and skin damage that can lead to skin cancer.

People of all ages and skin tones should limit the amount of time they spend in the sun, especially between mid-morning and late afternoon, and avoid other sources of UV radiation, such as tanning beds. It is important to keep in mind that UV radiation is reflected by sand, water, snow, and ice and can go through windshields and windows. Even though skin cancer is more common among people with a light skin tone, people of all skin tones can develop skin cancer, including those with dark skin.

Follow these tips to protect your skin from sunlight:
  • Wear a hat with a wide brim all around that shades your face, neck, and ears. Baseball caps and some sun visors protect only parts of your skin.
  • Wear sunglasses that block UV radiation to protect the skin around your eyes.
  • Wear long sleeves and long pants. Tightly woven, dark fabrics are best. Some fabrics are rated with an ultraviolet protection factor (UPF). The higher the rating, the greater the protection from sunlight.
  • Use sunscreen products with a sun protection factor (SPF) of at least 15. (Some doctors suggest using a product with an SPF of at least 30.) Apply the product's recommended amount to uncovered skin 30 minutes before going outside, and apply again every two hours or after swimming or sweating.
Keep in mind that the sun's rays...
  • are strongest between 10:00 a.m. and 4:00 p.m.
  • can go through light clothing, windshields, windows, and clouds
  • are reflected by sand, water, snow, ice, and pavement
TRIO newest board member shares her inspiring story
 
It took nearly three months to get back to work. Once she was back, her coworkers made comments on how forgetful she was. Unbeknownst to Lorrinda, she had elevated concentrations of ammonia in the brain, also called hepatic encephalopathy, which can lead to different neurological symptoms. Several months after returning to work she was in the hospital with pneumonia and was advised that she had liver cancer.  
 
Lorrinda lived most of her life with no health concerns. After living out of state for twenty-two years, she moved back to Oklahoma. After eight months of moving she was not feeling well and eventually went to the emergency room, where she was diagnosed with pancreatitis and end stage liver disease.
   
It took nearly three months to get back to work. Once she was back, her coworkers made comments on how forgetful she was. Unbeknownst to Lorrinda, she had elevated concentrations of ammonia in the brain, also called hepatic encephalopathy, which can lead to different neurological symptoms. Several months after returning to work she was in the hospital with pneumonia and was advised that she had liver cancer.     Click here to continue reading her full story . . .
 
 Adapted from an article
by Life Share,
the Oklahoma OPO  

 

TRIO Transplant Presentation Library gets a face-lift

a new downloadable full index with live links to all 100+ videos



click above to view the whole program

For more, link to the full library here
TRIO Public Policy advocacy update:   
     
Click below to download the 2-page report which features updates on our coalition work with these three groups:
 
 
  • THE PARTNERSHIP FOR PART D ACCESS:
    The Partnership scored a major victory on behalf of recipients covered by Medicare Part D prescription drug plans. . .
     
  • NASH/NAFLD: . . . stands for Non-Alcoholic Steato Hepatitis/Non-Alcoholic Fatty Liver Disease.   Earlier this year, the NASH ALLIANCE (nashalliance.org) was formed as
    a coalition of clinical experts, patients and life sciences innovators focused on educating policymakers and the public  . . .
     
  • NATIONAL LIVING DONOR ASSISTANCE CENTER (NLDAC)/LIVING DONOR PROTECTION ACT (LDPA): A coalition of individuals has been developing action plans to improve support for living donors. Led by Josh Morrison, from WaitListZero, and the Nobel winning economist Al Roth, from Stamford, this coalition is lobbying Congress to show that living donation truly works in combating the UNOS kidney waiting list . . .
     

     As always, we hope that your chapter members will continue to take an interest in legislative activities. Please contact either Rodger Goodacre, TRIO Board Member, or Ike Copperman, from Transplant Support Organization, for further information
     
Another TRIO supported advocacy issue . . .  
Reject Coverage Limits on Kidney Transplant Care 
 
 
 
Medicare's 3-year coverage limit on immunosuppressive medications costs transplant patients their lives and Medicare millions.    
 
Updates from the Honor the Gift Coalition 
 
 
There has been tremendous momentum for extending immunosuppressive coverage for kidney transplant patients over the last several months. We believe this could be the year that the legislation is finally passed once and for all.
 
  • In April, the Honor the Gift campaign and members of the kidney transplant community met with the White House and the Office of Management and Budget to discuss the Administration's need to support the gift of kidney donation.
 
  • In May, the Department of Health and Human Services released two reports that showed significant savings for extending immunosuppressive medication coverage. The CMS Office of the Actuary estimates that providing lifetime coverage for immunosuppressive medications will save the program $300 million over ten years, while the Office of the Assistant Secretary for Strategy and Planning estimates the policy would save more than $73 million within the same period. By their own analysis, HHS now confirmed what this community has long understood-ensuring access to immunosuppressive medications saves lives and saves Medicare money.
  • The reintroduction of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act is imminent. Last week, representatives from the Honor of the Gift campaign, its partners, and other members of the kidney transplant community met with congressional champions to discuss the timing of the bill's introduction and the strategy for getting this legislation passed. We are confident that the bill will be introduced in the coming weeks.
 Once the bill is introduced, we'll reach out to let you know how you can contact your members of Congress and ask them to support the legislation and #HonorTheGift of kidney donation. Stay tuned for more information
 
Learn more and sign the pledge (<-- click here for more details) 
Don't miss these recent news articles . . . 
 




 
 
 
 
Because Waters had chosen to be an organ donor, a special "honor walk" ceremony was scheduled for early this morning prior to the procedure. "It is requested that as many shipmates as possible join forces to honor a fellow Coastie and show support to the family," the military wrote.
 
 
 
Learn more with these Quick Links. . .
Stay Connected with TRIO on-line at http://TRIOweb.org or http://TRIOwebPTC.org and: