James Myers (Uncle Jim)

My name is James Myers. I live in Hammond, IN. I am an ESRD & PKD patient. I was lucky enough to have a transplant on April 27th, 2016. I write to you today to tell you my story, as well as, my experiences with polycystic kidney disease. At the age of 25, I went into the hospital with chest pain. From a simple x-ray, and was diagnosed with PKD.

I have lost 5 members of my family to PKD, including my Dad. Because of my family's history, I was immediately referred to Dr. Hellman, a nephrologist at Indiana University Health. He immediately put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every 6 months and took my medicine. I did the best I could do to stay on the kidney diet. There is no cure for PKD, and at that time there was very little they could do for me.

I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were colored by my impending death, or so I thought. It was a factor in a failed marriage, a legal career being cut short, and two professorships at two different colleges lost. I loved being with the kids.

Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012. I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a 4 year stretch on lifealysis. My schedule was 3 days a week, 4 hours per session.

I was very, very angry when I first went on dialysis. After watching my Dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My Dad passed after a short 5 yrs on dialysis, and I felt I was on the same life path as him. My days were numbered. I observed that many of my clinicmates came to the center by ambulance, were brought in on a gurney, walker or wheelchair.

One of my dearest friends, Maureen O'Brien, looked after me. Forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward 2 MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Every step along the way she had to argue and fight with healthcare officials. She had 3 transplants. She provided encouragement and a bright, vivid smile. She provided a light on my path.

I began to understand my role. I made a conscious choice. I wanted to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinicmates who could not advocate for themselves. I did not like the way the dialysis clinics, the government and the care staff pushed around or neglected my fellow Kidney Patients. The last straw for me was when they began to push for the cutting of funds to dialysis patients and clinics. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if i did not accept this responsibility, maybe no one else would.

I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. I spoke frequently. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my Dad & Maureen would be proud of me.

I feel it is my responsibility to lift spirits, so I rarely talk about personal issues anymore. It is my hope to inspire others to likewise advocate for our fellow Kidney Patients. The point of this Kidney Story is to raise hopeand to thank all of you that advocate for Kidney Patients.

PKD affects approximately 600, 000 Americans and 12.5 million people worldwide. It is one of the most inherited diseases on the planet. Polycystic Kidney Disease is more common than Cystic Fibrosis, Sickle Cell Anemia, Muscular Dystrophy, Hemophilia, Downs Syndrome, Hodgkins Disease combined. PKD is one of the four leading causes of Kidney Failure. It costs the federal government in excess of $2 Billion annually in Medicare and Medicaid costs for dialysis, transportation and related treatment. There is no cure. Please consider donating to the PKD Foundation.

Sincerely,

James Myers

2019 Advocate of the Year for the NKF

BOD and Ambassador for the AAKP

Ambassador for the Chronic Disease Coalition

Ambassador for the NKF of Indiana

Ambassador for the American Kidney Fund

Ambassador for the PKD Foundation

Ambassador for the DPC

#MoreThanKidneys

Home Guest Blogger

WHY WE NEED THE IMMUNOSUPPRESSION LAW

The Hope

January 30, 2020

The views here are those of the author and not necessarily those of The Hope or its sponsor Kibow® Biotech.

Written By: James Myers

CURRENT STATE OF THE LAW

The current law is governed by Title XVIII of the Social Security Act To Provide for Extended Months of Medicare Coverage of Immunosuppressive Drugs for Kidney Transplant Patients (H12297).[i] Medicare Part B covers these medications under very limited conditions.[ii] What Medicare Part B does not pay for is covered by Medicare Part D.[iii] The catch is if you’re entitled to Medicare because of your ESRD, your Medicare coverage ends after 36 months.[iv]Medicare will pay for your transplant drugs with no time if you were already entitled to Medicare because of age or disability before you were ESRD or you became Medicare eligible because of your age or disability after getting a transplant that was paid for by Medicare or private insurance that paid primarily to your Medicare Part A (Hospital Insurance) coverage in a Medicare-certified establishment.[v]

In plain English, unless you are Medicare-aged (65) or Medicare-disabled (something besides ESRD), the coverage for these critical medications stop 36 months after your kidney transplant![vi]

THE RUB

The problem is regardless of your Medicare status, a kidney transplant recipient has no choice, but to take immunosuppressant drugs for the life of their kidney transplant. The risk is your body rejecting your transplanted kidney, resulting in dialysis or death.[vii] When Medicare ends payments after 36 months for people who are too young or not disabled before they are declared ESRD, many kidney transplant recipients struggle to find affordable coverage. Some people are denied, while others refuse to seek a transplant for this reason. They simply cannot afford a transplant after the 36-month period ends.[viii] If a transplant recipient loses the kidney, they will have to go back on the waiting list for a kidney transplant and/or go back on dialysis.[ix]

THE COST ISSUE

There is a cost issue involved with the failure of a kidney after the 36 months expires. At a hearing of the House Energy and Commerce Committee, NKF Board Member, Dr. Matthew Cooper spelled out this issue:

“As a transplant surgeon for nearly 20 years, I have witnessed firsthand the impact of this shortsighted policy…Patients struggle to pay for the immunosuppressive drugs needed to maintain the health of their transplant when their Medicare coverage ends, especially lower income patients who lack group health insurance or do not qualify for Medicaid or other assistance. These financial pressures might force a patient into rationing their immunosuppressive drugs or foregoing them altogether, either of which almost absolutely results in graft failure.[x]”He further discussed that the cost of dialysis to Medicare per patient/per year is about $86,000. Medicare covers 100% of these costs for the dialysis life of the patient. Each transplant averages about $110,000. At the same time, Immunosuppressive drug costs just cost $2,300 per patient/per year, that is not covered by Medicare after 36 months for the people who do not qualify for coverage. He estimated that if Medicare would provide immunosuppressive drug treatment for life, an estimated $300 million would be saved in the first 10 years.[xi]

He told the Committee that H.R. 5534 will reduce graft loss, reduce the demand for another transplant, enable more patients to seek a first transplant, and protect the taxpayers from inefficient and wasteful expense. “As a taxpayer, it is doubly frustrating that Medicare will pay for dialysis and for the first and second transplant but will not pay for the medications needed to maintain and preserve the first transplant.[xii]”

Members of the Committee commented on the absurdity of the current policy during the hearing. Promises were made to move the bill quickly. Subcommittee Chair and Co-Sponsor of the bill, Anna Eshoo commented, “This bill will move. It just makes sense.”[xiii]

CONCLUSION

According to the NKF, nearly 95,000 people are on the waiting list for a kidney.[xiv] In 2017, nearly 3600 people died that were on that list without receiving a kidney transplant.[xv] The struggle to afford immunosuppression medications for kidney transplant recipients is unnecessary. The cost to continue Medicare coverage for all kidney transplant patients for the life of their kidney transplant will actually save money. The elimination of the 36-month rule will save lives, kidneys and money. It will encourage people to donate as opposed to discouraging kidney donation.

Dr. Gill said it best: “The policy is irrational, since Medicare has already paid for the kidney transplant and will pay to treat the patient with dialysis-despite its markedly higher cost-when the transplanted kidney fails…Our research has shown the United States stands alone…All other wealthy nations recognize the benefits of immunosuppressive medications and cover their costs for patients with functioning kidney transplants.[xvi]

It is impossible to justify continued inaction: The problem and its solution are both straightforward. The machinery required to fund, prescribe and delivery immunosuppressive medications is in place. All that is needed is the political will to pass legislation and allow U.S. patients to benefit.”[xvii]

As Kidney Advocates, we have been fighting to pass some version of this bill since 2011.[xviii] Now is THE time!

Follow this link to request your Congressman to sponsor H.R. 5534, exercising our political will for the Immunosuppression Bill to pass: https://advocacy.kidney.org/action-view/?sl=immunosuppressive-drug-alert

If this topic was interesting to you, read James other article “Why The Living Donor Act Is Important”

Sponsored By: Kibow® Biotech

From The Author James Myers

To learn more about James follow this link

My name is James Myers. I live in Hammond, Indiana. I graduated from Valparaiso University Law School and I have 2 MBA’s in Business and Healthcare Administration. Polycystic Kidney Disease runs in my family. I’ve lost 5 members of my family to PKD, including my Father. I have PKD. I was fortunate. Because of my family’s history, I was diagnosed at the age of 25, and was able to put off dialysis until the age of 58. I was on dialysis for 4 years and was transplanted on April 27th, 2016. I named my new kidney Woody. Woodrow is a family name, so I did this to honor my father and my grandfather.

*My advocate nickname is Uncle Jim. If you have a kidney question or issue you need help with, please do not hesitate to contact me at* kidneystories@hotmail.com. I thank the NKF for all the opportunities they have given to me.

ENDNOTES

[i] Title XVIII of the Social Security Act To Provide for Extended Months of Medicare Coverage of Immunosuppressive Drugs for Kidney Transplant Patients (H12297).

[ii] Prescription Drugs (Outpatient) https:// www.medicare.gov/coverage/prescription-drugs-outpatient (2019) (Transplant/Immunosuppressive Drugs)(Only if Medicare Paid for the Transplant).

[iii] Id.

[iv] Id.

[v] Id.

[vi] Id. , Congressional Hearing Held on the Comprehensive Immunosuppressive Drug Coverage for the Coverage for the Kidney Transplant Patients Act of 2019, https://www.google.com/amp/s/nkfadvocacy.blog/2020/01/09/congressiional-hearing-held-on-the-comprehensive-immunosuppressive-drug-coverage-for-kidney-transplant-patients-act-of-2019-h-r-5534/amp/ (January 9, 2020); Dr Cooper’s Testimony, https://nkf.egnyte.com/dl/pfc8TtWWCj (January 8, 2020); NKF’s Statement for the Record, https://nkf.egnyte.com/dl/Nf0D50B9Mk (January 8, 2020); Hearing Congressional Hearing National Kidney Foundation’s Dr. Matthew Cooper to Testify Before Congress, Congress Must Pass H.R. 5534 to extend immunosuppressive drug coverage, https://www.kidney.org/news/national-kidney-foundation-dr-matthew-cooper-to-testify-congress (Jan 8, 2020); NKF Applauds New Immunosuppressive Drug Coverage Legislation to Help Save Transplant Patients From Organ Rejection, https://www.kidney.org/news/nkf-applauds-new-immunosuppressive-drug-coverage-legislation-to-help-save-transplant-patients (January 6, 2020);

See Also: “Hear Bobbie’s Story on Why Transplant Patients Need Drug Coverage Now”, https:// youtu.be/37xSeUICFOc (2019); Immunosuppressants, https://www.kidney.org/atoz/content/immuno(2014); Medicare Policy on Antirejection Drugs Imperils Kidney Transplants, https://www.statnews.com/2020/01/08/medicare-policy-antirejection-drugs-imperils-kidney-transplants (January 8, 2020); NKF Leave Behind Infographic, Extending Medicare Coverage for Immunosuppressive Medication, 08-41-7476_BBJ (2019).

[vii] Id., Life After Transplant-Rejection prevention and healthy tips, https://www.kidneyfund.org/kidney-disease/kidney-failure/treatment-of-kidney-failure/kidney-transplant/life-after-transplant/(2020) ([without antirejection medication] “Your immune system, which protects your body from germs and harmful cells, recognizes your new kidney as a foreign tissue, and may try to reject it.”); Cleveland Clinic, Kidney Transplant Rejection, https:// my.clevelandclinic.org/health/articles/21134-kidney-transplant-rejection(May 20, 2019) Tushla, Lara, When A Transplant Fails, https://www.kidney.org/transplantation/transaction/TC/summer09/TCsm09_TransplantFails(2009).

See Also: Tonelli, Marcello & Gill, John, Our Medicare Policy for Kidney Transplants Is Totally Irrational, www.washingtonpost.com%2Fopinions%2Four-medicare-policy-for-kidney-transplants-is-totally-irrational%2F2017%2F12%2F06%Fecda8828-d9ec-11e7-b859-fb0995360725_story.html&psig=AOvVaw2rkc7sr3UsANE1nio-IrRM&ust=1559162459862631 (2019)(“We estimate that in the past five years, 7700 patients have needlessly lost their kidney transplants, 900 patients have prematurely died and Medicare has squandered nearly $1 billion in health-care costs that could have been averted if only immunosuppressive medications had been secured.”)

[viii] Myers, James, Pre-Transplant Deposits, Can You Afford A Kidney Transplant? , https://kidneystoriesonblogger.blogspot.com/2019/10/pre-transpant-deposits-can-you-afford.html?m=1(October 14, 2019)

[ix] Congressional Hearing Held on the Comprehensive Immunosuppressive Drug Coverage for the Coverage for the Kidney Transplant Patients Act of 2019, https://www.google.com/amp/s/nkfadvocacy.blog/2020/01/09/congressiional-hearing-held-on-the-comprehensive-immunosuppressive-drug-coverage-for-kidney-transplant-patients-act-of-2019-h-r-5534/amp/ (January 9, 2020); Dr Cooper’s Testimony, https://nkf.egnyte.com/dl/pfc8TtWWCj (January 8, 2020); NKF’s Statement for the Record, https://nkf.egnyte.com/dl/Nf0D50B9Mk (January 8, 2020); Hearing Congressional Hearing National Kidney Foundation’s Dr. Matthew Cooper to Testify Before Congress, Congress Must Pass H.R. 5534 to extend immunosuppressive drug coverage, https://www.kidney.org/news/national-kidney-foundation-dr-matthew-cooper-to-testify-congress (Jan 8, 2020); NKF Applauds New Immunosuppressive Drug Coverage Legislation to Help Save Transplant Patients From Organ Rejection, https://www.kidney.org/news/nkf-applauds-new-immunosuppressive-drug-coverage-legislation-to-help-save-transplant-patients (January 6, 2020);

See Generally: H.R. 5534-Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019, https://www.congress.gov/bill/116th-congress/house-bill/5534/all-action?overview=closed&KWICView=false (2019-2020); Life After Transplant-Rejection prevention and healthy tips, https://www.kidneyfund.org/kidney-disease/kidney-failure/treatment-of-kidney-failure/kidney-transplant/life-after-transplant/(2020) ([without antirejection medication] “Your immune system, which protects your body from germs and harmful cells, recognizes your new kidney as a foreign tissue, and may try to reject it.”); Cleveland Clinic, Kidney Transplant Rejection, https:// my.clevelandclinic.org/health/articles/21134-kidney-transplant-rejection(May 20, 2019) Tushla, Lara, When A Transplant Fails, https://www.kidney.org/transplantation/transaction/TC/summer09/TCsm09_TransplantFails(2009).

[x] Congressional Hearing Held on the Comprehensive Immunosuppressive Drug Coverage for the Coverage for the Kidney Transplant Patients Act of 2019, https://www.google.com/amp/s/nkfadvocacy.blog/2020/01/09/congressiional-hearing-held-on-the-comprehensive-immunosuppressive-drug-coverage-for-kidney-transplant-patients-act-of-2019-h-r-5534/amp/ (January 9, 2020); Dr Cooper’s Testimony, https://nkf.egnyte.com/dl/pfc8TtWWCj (January 8, 2020); NKF’s Statement for the Record, https://nkf.egnyte.com/dl/Nf0D50B9Mk (January 8, 2020); Hearing Congressional Hearing National Kidney Foundation’s Dr. Matthew Cooper to Testify Before Congress, Congress Must Pass H.R. 5534 to extend immunosuppressive drug coverage, https://www.kidney.org/news/national-kidney-foundation-dr-matthew-cooper-to-testify-congress (Jan 8, 2020); NKF Applauds New Immunosuppressive Drug Coverage Legislation to Help Save Transplant Patients From Organ Rejection, https://www.kidney.org/news/nkf-applauds-new-immunosuppressive-drug-coverage-legislation-to-help-save-transplant-patients (January 6, 2020);

[xi] Id.

[xii] Id.

[xiii] Id., Congressional Hearing Held on the Comprehensive Immunosuppressive Drug Coverage for the Coverage for the Kidney Transplant Patients Act of 2019, https://www.google.com/amp/s/nkfadvocacy.blog/2020/01/09/congressiional-hearing-held-on-the-comprehensive-immunosuppressive-drug-coverage-for-kidney-transplant-patients-act-of-2019-h-r-5534/amp/ (January 9, 2020).

[xiv] NKF Leave Behind Infographic, Extending Medicare Coverage for Immunosuppressive Medication, 08-41-7476_BBJ (2019).

[xv] Id.

[xvi] Tonelli, Marcello & Gill, John, Our Medicare Policy for Kidney Transplants Is Totally Irrational, www.washingtonpost.com%2Fopinions%2Four-medicare-policy-for-kidney-transplants-is-totally-irrational%2F2017%2F12%2F06%Fecda8828-d9ec-11e7-b859-fb0995360725_story.html&psig=AOvVaw2rkc7sr3UsANE1nio-IrRM&ust=1559162459862631 (2019).

[xvii] Id.

[xviii] Id.