TRIO National 
Member E-News  
February 2020
Inspiring transplant news for :  
              
"The miracle of your being alive 
calls for celebration every day!"
 
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And yes, this is what life after transplant is all about!
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click on DLA hearts above to learn more . . .
 
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Enjoy this February action filled issue to learn more about:
  • living the inspired life every day  (Snoopy above)
  • February 14th: 'Donor Day 2020' (hearts above) 
  • reducing your Rx expenses in 2020 (part 2)
  • CareDx support for patients (our sponsor)
  • Honor the Gift campaign exciting update (calling for ACTION)
  • Living organ donor gives life twice!
  • "When Death Becomes Life" book author's NPR audio interview
  • HHS seeking patient speakers (immediate opportunity!)
  • New heart transplant method in US test (hope for many)
     
  • New liver & intestinal organ transplant system went into effect Feb 4th (click here to read UNOS announcement)
     
  • UNOS public comment now open thru Mar 24th
    (click here to link to that UNOS page)
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Sincerely,  
TRIO president
      GleasonJim@aol.com
(609) 877-4493
Reducing your out-of-pocket Rx expenses
- part 2 of a money saving series

(credit to Daniel Klein, Pres & CEO of the PAN Foundation)
Expensive weekly ritual

 Editor note: Even if you have insurance, our meds can be a challenging expense.  But there are ways to lessen that as seen by the advice below.  Recently I was picking up an Rx for my wife at the local drug store with a co-pay of $45.  The friendly pharmacist looked into the co-pay of their own store's discount card and instead of using our insurance  applied their retail med card insurance with a co-pay of just $10!  As Lorrinda advised in our last issue, it pays to ask and be proactive. 

The following was a 6-pont tip sheet shared by the PAN Foundation that may help you save money in this new year.

 1. Talk to your doctor or pharmacist
     Your healthcare team can help you find ways to manage your out-of-pocket costs. Skipping doses of medication or failing to fill prescriptions because they're too expensive can make your treatment less effective. Doctors, pharmacists and other healthcare providers often have access to drug samples, coupons and information about organizations that can help you get the medication that you need at a price you can afford. While it can be hard to discuss your finances with your healthcare team, being clear about what you can afford can help them tailor your treatment plan effectively.

2. Ask your doctor if a generic drug is available
Generic drugs can be a great way to reduce your out-of-pocket prescription costs. Many name-brand drugs that are used to treat common conditions have a generic equivalent that is significantly cheaper, especially if the name-brand medication is an older drug. Generic drugs are safe and effective and are rigorously tested by the FDA to ensure that they are just as good as the brand name versions.

3. Start using FundFinder
Sign up for FundFinder (Fundfinder.panfoundation.org). FundFinder is a free web-based app developed by the PAN Foundation that connects you with a charitable patient assistance foundation that can help pay the out-of-pocket costs for your prescription medications. Rather than having to monitor multiple charitable patient assistance foundations to see if they're offering funding, FundFinder checks for you and alerts you through email or text when the financial help that you need is available at PAN or another charitable foundation.

4. Shop around and use coupons
If your medication is more than you can afford at your usual pharmacy, check with other pharmacies in your area to compare out-of-pocket costs. For those with commercial insurance, don't forget to ask your doctor or pharmacist if there are any coupons or money-saving offers available for your prescription.

5. Learn more about assistance from your state
Many states offer pharmaceutical assistance programs or other health programs to help pay for the out-of-pocket costs of prescription medications. Contact your state's department of health to find out about any assistance programs that are available and if you qualify. Your state's health department can also guide you to other state and charitable resources that can help you access your medication.

6. Review your Medicare coverage options
If you have health coverage through Medicare, make sure that your plan meets your health and financial needs. There may be other options that will help you better manage your out-of-pocket drug costs. Find out from an expert if your current plan includes the prescription drug coverage that you need and how to search for a new drug plan if it doesn't. You may also be eligible for other Medicare programs-like a Low-Income Subsidy or Extra Help-that can lower your out-of-pocket costs.

Living with an illness is stressful enough without the added worries about how to afford the out-of-pocket costs for your medication. You can learn more about patient assistance charities like PAN and the ways you can get help paying for your prescription medical treatments at panfoundation.org.

click here to link to PAN (that's Patient Access Network Foundation)
"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 . . .
TRIO is asking for your support 
 
"The Comprehensive Immunosuppressive Drug Coverage for Kidney Patients Act has been introduced in the House of Representatives!"

Finally in 2020: It's time to ensure Medicare coverage of immunosuppressive drugs for kidney transplant patients beyond the current 36 month coverage.

ACT NOW: 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 to gain passage of this important legislation.
'He's Family Now': Organ Donor Gives The Gift Of Life -
Twice
 
"Literally next to becoming a dad, the best thing I've ever done, best thing that's ever happened to me," he said.

       Organ donation is the gift of life for many desperately ill people, including Fred Howe of Dyker Heights, who was saved by a stranger. Howe's liver donor, Joe Gilvary, is one of the few who've given the gift of life - not once, but twice. But he still doesn't think of himself as a hero.

click image to view video story

Gilvary, who lives in Maryland, wasn't even a registered organ donor when he read a desperate plea for a kidney in an online prayer group. He was so moved, he offered one of his to the stranger in Brooklyn - Fred Howe, who was suffering from kidney disease and running out of time.

Just a year after donating his kidney, Gilvary gave part of his liver to an infant in Ohio - Brittany Kutscher's daughter, Katelyn - who was struggling to survive."I just thought that it was amazing that a person would do that for somebody they don't even know," said Kutscher.
"When Death Becomes Life"
An NPR interview with the author/surgeon, Joshua Mezrich 
 
 Having recently enjoyed a new book by this abdominal transplant surgeon, I was pleasantly surprised to hear him being interviewed on NPR's "Fresh Air" radio program.

 
 When Death Becomes Life is a thrilling look at how science advances on a grand scale to improve human lives. Mezrich examines more than one hundred years of remarkable medical breakthroughs, connecting this fascinating history with the inspiring and heartbreaking stories of his transplant patients.   


DDIR: Deceased Donor Intervention Research
Seeking patient speakers for upcoming virtual meeting


computer-work-group.jpg
DDIR is on the agenda of the HHS Secretary's Advisory Committee on Human Research Protection ( SACHRP). They're  currently seeking transplant recipients who would be willing to share their experiences, particularly looking for recipients who can speak to the informed consent aspect of their experience, and describe what they were told about the transplant procedure both during their time on the waiting list as well as later at the hospital. If these persons received an organ in recent years that had been part of a research intervention, all the better.
 
SACHRP's subcommittees have an upcoming meeting February 11-12, held virtually through WebEx. Speakers would log into the meeting, and give a brief (10-15 min) description of their personal transplant experience, including how and when they learned about the risks of the procedure, and the informed consent process.
 
If interested, please contact and mention TRIO:
Julia G. Gorey, J.D.
Office for Human Research Protections (OHRP)
Office of the Secretary, DHHS
(240) 453-8141 office
'Donation after cardiac death': New heart transplant method being tested for the first time in the U.S.

More than 250,000 people in the U.S. are currently at the end stages of heart failure, up to 15% of whom are in desperate need of a transplant. A new method of "reanimating" donor hearts from those who have died from cardiac failure is currently being tested in the U.S., and may soon ease that burden.

     As part of the procedure that has been used for recovery of other organ types, known as "donation after cardiac death," or DCD transplants, organs are retrieved from those who have died because their heart stopped - either naturally or because physicians discontinued life support. Now with hearts that work is made possible by a machine that allows the heart to not only be perfused with warm blood after it has been removed from the donor, keeping the heart functional and "alive" enough to be transported and transplanted several hours after retrieval, but also allows surgeons to assess the heart's functionality in a way that wasn't previously possible.

     Last month, a team at Duke University was the first in the U.S. to perform the procedure in an adult as part of a multicenter clinical trial. And just last week, Massachusetts General Hospital in Boston and the University of Wisconsin in Madison, which are also a part of the trial, reported their first such transplant.

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