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Pass The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act !

From the NKF:

On September 22nd, Representatives Burgess (R-TX), Kind (D-WI), Harper (R-MI), Meehan (R-PA), Herrerra Beutler (R-WA), Cooper (D-TN), Griffith (R-VA), and McDermott (D-WA) re-introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139).  H.R. 6139 will serve as a safety net by assisting kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new transplant.

Individuals with end-stage renal disease (ESRD), who require dialysis or a transplant to survive, are eligible for Medicare regardless of age or other disability.  If these ESRD patients remain on dialysis, there is no time limit on their Medicare eligibility.  However, despite quality of life benefits and the cost-effectiveness associated with transplantation compared to kidney dialysis, recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant.  As a result, they often face the challenge of finding affordable coverage that allows them to obtain medications required to maintain their new kidney.  If the transplanted kidney fails, they must return to dialysis and wait again in the hopes of receiving another transplant.  Both of these options are more costly and more detrimental to patient health than maintaining the new kidney.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would extend Medicare for immunosuppressive medications indefinitely, ensuring patients have access to these lifesaving medications.  Only immunosuppressive coverage would be extended and all other Medicare coverage would end 36 months post-transplant, as it does now.  The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include this benefit.  By supporting lifetime immunosuppressive coverage, Congress will help improve long-term transplant outcomes, reduce the number of kidney patients who require another transplant, and enable more patients to choose transplantation.

Please contact your Representatives and urge them to cosponsor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help transplant recipients keep access the medications they need to maintain their new kidney.


“Extending Medicare coverage of immunosuppressive drugs for kidney transplant recipients is a critical step to ensuring a patient’s best chance of success post-transplant.” – Kevin Longino, CEO of the National Kidney Foundation.”

Link to Petition :







Joe and me at Five Guys Hamburger in Munster 7212016tumblr_ocsoizlrpp1s6a4slo2_400


How does one normally become aware of  Polycystic Kidney Disease?  In my case, I became aware through my Father. I’m 62 now.  This is about the same age my Dad was when he first told me he had PKD.  He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.”  He went on, “let me put it this way, the doctors said I won’t live to be a hundred.”  In the years that followed he became dizzy, had difficulty standing and maintaining his balance.  In a very short time, he was on dialysis.  By 1983, he was gone.  He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana.  He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD.   I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.

One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes.  He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us.  They termed this, “Childhood PKD” and told the rest of us it was an aberration.

When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job.  Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains.  My PCP told me that my cysts were so large they could be seen on a plain x-ray.  So much for the environmental/childhood theories.  To say this came as a blow, was an understatement.  I watch my Dad die and I felt my future was cast in cement.

I did a lot of things wrong after that, but more importantly were the things I did that were right.  I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University.  I was put on a renal diet right way.  I was given high blood pressure medication.  I saw them every six months, where they did a urine test and a blood test on every visit.  I was able to put dialysis for a long time, over 30 years.  I was horribly frightened of dialysis because of what I saw when I sat with my Dad.  But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.

Others were not so lucky.  I became a kidney advocate and this is what I plan to do the rest of my life.  I like helping others , especially my friends with PKD!



On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.

For PKD Awareness Day, I want to remind everyone to get tested.  It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out.  Be PKD aware!

FDA’s Patient-Focused Drug Development Initiative Meeting

Great post, I’m in how about you?

Advocacy in Action

If you’ve received an organ transplant the Food and Drug Administration (FDA) wants to hear from you.  On September 27, 2016, FDA will hold its first to gain insight directly from patients about their experiences living with organ transplants and the medications they take to prevent organ rejection and manage related conditions.  This information will help FDA to consider issues important to patients when reviewing and considering approval of new therapies for transplant patients that may be developed in the future.  Input from these meetings will be incorporated into an official FDA report titled the Voice of the Patient.

If you are interested in participating live or via webcast here are the registration details: The public meeting will be held on September 27, 2016, from 9 a.m. to 5 p.m. Please register here for the meeting by September 20, 2016:

To keep up the momentum after the meeting, the National Kidney…

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