TRIO National 
Member E-News  
June 2019

TRIO Maryland chapter hosts another huge educational conference
We asked YOU that challenging question: 
"Do you think . . ."
(see May's 1-question survey response results below) 
Six Protected Classes advocacy success report below . . . 
See what one person can do to support TRIO's mission
using GoFundMe - and you can help
with your donation and sharing her appeal with your own family and network - $3k+ and rising
Note: GFM tally doesn't show the additional $2k raised outside that platform 
go to Katherine Egan's GoFundMe campaign 
Click on image to see full story
PTC (Post-transplant Cancer) Site progress 
  (click on to see latest updates,
especially in the PTLD page with its new downloadable TRIO Fact Sheet and clinical trial information)
TRIO president
(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
for their pioneering work for the transplant patient"

Click above to learn more . . .

Summer's coming:
"Time to focus 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
"What do YOU think?" May survey results
In our May TRIO E-News article about the UK legislation changing their country's organ donor registration process to an 'Opt out' one, we asked about 1,000 readers to complete this one question survey:

"Do you think organ donation will ever be the "Opt-out" standard in the US? (that you will be considered an organ donor unless you specifically register to NOT be an organ donor - vs. today's Opt-in rule)"
  Based on those survey responses, we saw . . .

A TRIO Public Policy advocacy update:   
TRIO supported Part D successful drug fight   
The Fight to Protect Your Prescription Drug Programs
In follow up to last month's TRIO Public Policy committee report describing in detail this issue, we are happy to celebrate this latest update announcing  the campaign's success.   
TRIO was one of over 60 groups joined together in this coalition named 'Partnership for Part D Access' with committee leaders Rodger Goodacre and Ira Cooperman and others traveling for meetings with legislators, write-in campaigns from TRIO members and chapters across the country, among other initiatives.
The CAN (Cancer Action Network) did a great job of summarizing the campaign and its results in their  letter dated May 31st, so rather than try to repeat its words, click below to read that report.
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.  
Help honor the gift of life by protecting kidney transplants.
Learn more and sign the pledge (<-- click here for more details) 
Don't miss these recent news articles . . . 

A year in a hospital bed is a "success" while dying after 11 months is failure.
By Daniela J. Lamas
Dr. Lamas is a pulmonary and critical care physician
Learn more with these Quick Links. . .
Liver policy reverted to DSA-based model
UNOS liver policy explained
TRIO Texas chapter building transplant house

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