TRIO National 
Member E-News  
May 2019


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Again we ask YOU another challenging question: 
"Do you think . . ."
(see May's 1-question survey in the Opt-out article below) 
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New Year's Day 2020
Rose Parade Donate Life Float image 
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Will you happen to be in Texas May 17th?
See TRIO Central Texas amazing Amy's House
groundbreaking event invitation below
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TRIO welcomes a long time friend and now new sponsor in advertising support by CareDx - be sure to click through their monthly ad below to say thanks and learn more about what this great company is doing to help heart, kidney and now liver transplant survivors      
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Please welcome our new TRIO board members:
  (click on each photo to view their bios)
 
Lorrinda Gray- Davis (Oklahoma)
 
Pati Hughes-Fudge (SanFrancisco)
 
    
 
 
 
 
 
 
 
                                          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"

Click above to learn more . . .

How's this for a TRIO chapter project:
"Where there's a dream and personal passion,
there's a way . . ."
-
John & Margaret Henderson

New opt-out law considers all adults in England organ donors
 
In the spring of 2020, all adults in England will become organ donors, according to a new law.   On March 15, Organ Donation (Deemed Consent) Bill 2017-19 was granted Royal Assent and became law. Also known as the "opt-out bill" and Max and Keira's Law, the legislation means that all adults living in England are organ donors unless they record a decision to opt-out.
 
The law does exclude people in certain groups from the automatic opt-in. Those under the age of 18 are excluded, for example, as are those who have been in England for less than 12 months. The law also excludes individuals who "lack the capacity to understand the change" from automatically opting in.   
 
"What do YOU think?"
click above to take the survey
 
Share your opinion on whether you feel the US would ever  go with this default 'Opt-out' rule by clicking on the graphic or linking below to this simple one question survey:
 
 Come back to see the survey results in our June issue. 
  
About Max and Keira's Law
The new law is dubbed "Max and Keira's Law" after 10-year-old heart recipient, Max Johnson, and his young donor, Keira Ball. The donor was just 9 when she died in a car accident; doctors used her organs to save four lives. Max Johnson, who was hospitalized with heart failure following a viral infection, received Keira's heart.
 

To read the full article . . .
CLICK HERE

A TRIO Public Policy update:   
Part D drug fight continues with TRIO support  
 
The Fight to Protect Your Prescription Drug Programs
 
 
Every day, tens-of-thousands of organ transplant recipients rely upon their Medicare drug benefit. For us, immunosuppressants are necessary to help prevent rejection of the organ transplant and avoid other medical complications.
 
Because patients with organ transplants react differently to different immunosuppressants, access to the full range of effective medications is a crucial component of successful treatment and recovery. Fortunately, Medicare's "Six Protected Class" policy has long stood as a guarantee to patients that their access to all available medications would never be in doubt.
 
The Background
During implementation of the Medicare Modernization Act (MMA), which created the Medicare Part D drug program in 2003, CMS (at the urging of Congress) issued guidance directing Medicare drug plans to cover " all or substantially all " medications for patients with organ transplants, mental illness, epilepsy, Parkinson's Disease, lupus, cancer, and HIV.
CMS created this policy to safeguard access to lifesaving medications for vulnerable Medicare beneficiaries who rely on these classes of prescription drugs to protect them from potential medical challenges associated with any interruption or change of therapy. This means that a Medicare beneficiary on innunosuppresants, for example, can expect to get the exact treatment his or her doctor prescribes when going to the pharmacy - without having to worry about whether or not it's covered by a prescription drug plan.
 
Over the years, there have been challenges to this policy from various advisory groups and others who believe that this unencumbered access substantially increases the costs to the Part D system. Time after time, these challenges have been refuted by independent studies. Not only is there very little, if any, increase to Part D prescription drug costs, it is anticipated that there would be substantially more costs incurred by the patient in lab tests, doctor visits, hospitalizations, and in the case of transplant recipients, the threat of organ rejection.
 
The Fight
For a number of years, a tireless association of patient advocacy groups that represent the six protected classes, as well as a leading Washington group of professionals, have fought to keep this policy in effect.
 
The association is called The Partnership for Part D Access ( www.partdpartnership.org ). Together, this leading coalition of patient advocacy organizations has arranged meetings in Washington D. C. with congressional leaders and encouraged them to make sure CMS knows that any changes to the six protected class policy are not welcome.
 
The Threat
Unfortunately,the voices for change continue to make noise. Under the guise of reducing prescription drug costs, there are ongoing efforts in the legislative and executive branches to substantially weaken the protected classes.
 
The Partnership continues to create effective strategies to counteract these voices. Visits to Congressional staffers and Members of Congress, letters to CMS and HHS officials, and effective and important public relations and social media campaigns have kept the efforts in front of the public. Grassroots efforts with letter-writing campaigns from patients have also played a major role in making sure that key members of Congress keep the pressure on CMS to abandon proposed changes to the policy.
 
TRIO's Public Policy chair:
Rodger Goodacre
From TRIO's point of view, Rodger Goodacre and Ike Copperman, from our sister group, Transplant Support Organization, located in Westchester County, New York, continue to keep us informed about the activities needed to maintain these protections for transplant recipients. Both Rodger and Ike have been involved in the congressional visits, the letter-writing, and the conference calls arranged by The Partnership.
 
For May, 2019, The Partnership is mounting a series of congressional visits to legislators when they return to their home offices. Please contact Rodger ( rodger.goodacre@gmail.com ) or Ike Copperman ( irajay2004@gmail.com ) for more details on participating in this campaign to visit legislators.
Did you miss these recent news articles?

University of Maryland's Schools of Medicine and Engineering First to Use Unmanned Aircraft to Successfully Deliver Kidney for Transplant at University of Maryland Medical Center 
University of Maryland Unmanned Aircraft Used to Complete Kidney Transplant
click image to watch awesome video of this historic flight: University of Maryland Unmanned Aircraft Used to Complete Kidney Transplant
 
 
  See these and many others that post on the TRIO website's 
 NEWS section, updated almost daily  
Quick Links
Doctor is now the patient, and blogs her transplant experience
Liver Allocation issue
Want to observe heart transplant surgery?

Stay Connected with TRIO on-line at http://TRIOweb.org or http://TRIOwebPTC.org and: