Monday, February 25, 2019

Early Detection and Treatment Saved My Life

Advocacy in Action

Early Detection and Treatment Saved My Life


 nkf _advocacy

1 year ago

By Jim Myers, Transplant Recipient and Kidney Advocacy Committee advocate

My name is James Myers and I’m a polycystic kidney disease (PKD) patient.  PKD is an inherited form of chronic kidney disease where liquid filled cysts form on one’s kidneys.  Most often it leads to high blood pressure, abdominal pain, and then kidney failure.




I was diagnosed at the age of 25, almost 40 years ago.  PKD runs in my family.  I’ve lost five members of my family to PKD, including my Dad.  When he passed away in 1983, I was tested.  On a simple x-ray, they were able to detect the large cysts on both of my kidneys.  This came as a blow to me, then a young practicing attorney. I was referred to Indiana University Health in Indianapolis.  They put me on high blood pressure medication, on a renal diet, and took blood and urine from me every six months.

Because I was tested and treated early in my life, I was able to postpone having to be on dialysis for 23 years, until the age of 58.  My dialysis was also easier on me than many of my clinic-mates and I was transplanted in four years – shorter than the average time in Indiana.

The fact that I was diagnosed and treated early on in my life has made a huge difference! The fact that my family doctor knew to make a quick referral to a nephrologist made a huge difference.  Their team approach to my case saved my life.  This is what H.R. 3867 is all about. This legislation would help doctors detect kidney disease earlier, when something can be done to slow the progression of the disease and improve the lives of patients.

My case shows that the early detection and treatment of kidney disease can prolong and improve a kidney patient’s life.  I’m living proof of that.  Please support the early detection and treatment legislation proposed by the National Kidney Foundation by sending your legislators a letter asking that they become a co-sponsor. By getting Congress to pass this law, we can save many more lives!


https://www.google.com/url?sa=i&source=web&cd=&ved=2ahUKEwj0p9766NXgAhWLyIMKHeUFBgoQzPwBegQIARAC&url=https%3A%2F%2Fnkfadvocacy.wordpress.com%2F2018%2F01%2F16%2Fearly-detection-and-treatment-saved-my-life%2F&psig=AOvVaw04-sBdKDEkbLynnC6miQXd&ust=1551147524366304

Voices of PKD: Jim Myers, kidney advocate



ADVOCACY, VOICES OF PKD

Voices of PKD: Jim Myers, kidney advocate




Jim Myers

My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond, Ind. My mother and father ran a couple of grocery stores in my hometown, Cedar Lake, Ind. My dad was afflicted with polycystic kidney disease. On his side of the family, four other people died from PKD. I’ve lost five members of my family to PKD.

I was diagnosed with PKD when I was 25 years old. I went into my local hospital with what I thought were chest pains. From a simple x-ray, my family doctor was able to diagnose that I had multiple, visible cysts on my kidneys. He immediately referred me to nephrologists at Indiana University in Indianapolis for care and treatment. Under the guidance of Dr. Hellman, I learned that PKD was hereditary and had no cure, but the growth of the cysts could be slowed and controlled by high blood pressuremedication and a renal diet. As a practicing lawyer and later a college professor, this frightened me at the time, so I tried very hard to follow the protocol and make all my follow up visits. I was able to stay off dialysis until the age of 58. Then I was on dialysis for four years before receiving a transplant in 2016. I nicknamed my kidney Woody, after my dad. Woodrow is a family name, and it has been every Jim’s middle name since my grandfather and continues today through my son.




Jim on the day of his transplant, with his son Jim and daughter-in-law Monica

Like all PKD, patients, I have had my ups and downs. I had days where I passed kidney stones uncontrollably, I have had anemia, cysts burst and back pain so bad I could not move. Until 2018, I had been hospitalized at a minimum twice a year with PKD-related complications. I was no longer able to continue in my profession. I lost my marriage and my home. Initially, I was very angry, bordering on rage. I watched my father die, and I was certain that this was my fate.

While I was on dialysis, I noticed that although I drove myself to and from treatments, most of my other clinic mates came to the center by ambulance and were moved to their chairs by gurney, wheelchairs, walkers or canes. At almost the same time, Central Management Services for Medicare began to send out notices of cuts to funds for dialysis centers. Cuts could mean some devastating things for myself and my clinic friends: loss of nurses, technicians, social workers and a close place to dialyze. I thought someone should do something. These people were too sick to fight back. I was one of the healthier guys, and with my background as trial lawyer, I slowly came to the conclusion that at least in our clinic, it would have to be me. This is how my kidney advocacy began.




Jim speaking with Todd Young, U.S. Senator of Indiana, in Washington, D.C.

I started a petition on change.org. I became very active on social media. I wrote over 100 letters to the editor on the subject and I joined as many major local and national kidney advocacy groups as I could, including the PKD Foundation. I wrote articles and blogs. I contacted my local and national politicians. I spoke to any group that would have me. I worked with other organizations and people to learn how to fight against political challenges leveled against the kidney community, which I continue to do to this very day. I have been very fortunate to have won awards for my advocacy.

I continue to be very active on social media. I post kidney-related matters almost every day on Facebook, Twitter, Instagram and Tumblr. I reach approximately 100,000 people every month. I run 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites. I have lectured on the subject of using social media to advocate for our fellow kidney patients to many large groups and kidney organizations.




Jim speaking at the 2018 AAKP Annual Convention in St. Petersburg about using Facebook to advocate for kidney disease

The advice that I would give to other PKD advocates is to play to your strengths. Use what you do best to raise awareness for PKD/kidney disease. If you speak well, write well, are musically inclined, research well, run a kidney related business well or any other talent you do well, that is your best avenue to produce great results for your advocacy. Use your gifts to help others. I’m a full time kidney advocate now. It is a decision that I do not regret. I highly recommend it. Questions? Don’t hesitate to contact me. My friends call me Uncle Jim.

https://pkdcure.org/blog/voices-pkd-jim-myers-kidney-advocate/

Q&A with CDC Ambassador James Myers




Q&A with CDC Ambassador James Myers

9.27.18




Nearly 40 years ago James Myers was diagnosed with polycystic kidney disease (PKD), which is an inherited form of kidney disease. Because Myers was tested early, he was able to postpone dialysis for 23 years and received a kidney transplant only four years after that.

An Indiana native and attorney, Myers has spent his life engaging in advocacy work on behalf of kidney patients and others living with chronic diseases. Read more about Myers’ passion for advocacy in our interview.

Q: Why did you first become involved in advocacy work?

A: I was in my first year of dialysis in 2012 when the Centers for Medicare and Medicaid Services had threatened to cut services to dialysis centers. This meant that we could lose support staff, nurses, dialysis techs, social workers and dieticians. The people I took dialysis with were very ill, often coming to the center by ambulance, on a gurney or crutches, in walkers and wheelchairs. For all practical purposes they were helpless.

I was an old trial lawyer, a plaintiff’s lawyer, and I did not look over injured people – I helped them. At that moment, I decided I was the only one in that room that could really help them and I accepted my responsibility. I put a petition up on Change.org, l wrote to newspapers, I did interviews, I wrote articles, I joined many kidney organizations and I became active on social media. I learned that I am a kidney advocate and I love fighting for others when they can’t.

Q: When did you first begin experiencing chronic disease symptoms and how did you feel after receiving your initial diagnosis?

A: I’ve lost five members of my family to PKD, including my father. I began experiencing issues after he passed in 1983. I was diagnosed at the age of 25 by a simple X-ray, and at the time, I was a practicing attorney with a wife and a child. Because of my experience with my dad, this news came as a horrible blow to me. My dad died after having battled congestive heart failure, uremic poisoning and dementia, which were all secondary to PKD. I felt that I would die soon.

Q: What inspires you?

A: I’m inspired by my fellow advocates, who lift my spirits every single day. I’m inspired by my fellow kidney patients who fight and never give up. Joy comes to me every time someone receives a transplant. My friends on social media inspire me with their continued efforts to raise awareness. The organizations and their members that I belong to bring me renewed vigor and positive reinforcement. I am learning so much from my fellow advocates within the Chronic Disease Coalition – their perseverance is an inspiration to me.

Q: What is one piece of advice you would offer to others who are battling a chronic disease?

A: Never ever give up, and advocate for others. Next to raising my son, this is the most fulfilling and meaningful thing I’ve ever done. If you are able, help your fellow patients. I live by this motto I have seen on a Facebook meme: “I’m a Kidney Patient the rest of my life, but I still have brain and I still have my voice. Therefore, it is my DUTY to advocate for those who cannot advocate for themselves the rest of my life.”

Q: What is the importance of support groups, both in-person and online? How can newly diagnosed patients find a support group near them?

A: It is very, very important! When I was first diagnosed, I felt very alone, and I think other people feel that way as well. The support groups made me recognize that there were others like me who had battled the disease longer. This gave me hope and others as well. Additionally, support groups can teach you how to more effectively manage your disease and what you can do to make life better. If you need advice or a resource for information, members in support groups can help.

Finding them is easy – Google it, check on social media or ask an experienced friend for help. You will be surprised just how many people and sources can help and how many groups are available to you by simply making a phone call or pushing a button. Groups like this may be in your neighborhood, or as close as your smartphone.

https://chronicdiseasecoalition.org/qa-with-cdc-ambassador-james-myers/3

Saturday, October 6, 2018

WE NEED A NEW MEDICARE POLICY ON IMMUNOSUPPRESSANT MEDICATIONS FOR KIDNEY PATIENTS



WE NEED A NEW MEDICARE POLICY ON IMMUNOSUPPRESSANT MEDICATIONS FOR KIDNEY PATIENTS





Our Medicare policy on anti-rejection medications is outdated and should be changed. Currently, for 36 months after transplant, Medicare picks up the high costs of immunosuppressant medications.  After that point, if you are under the age of 65, you must either have independent/supplementary insurance to pick up that coverage or you must pick up the expense out of pocket.  Since the costs for this medication is extremely expensive, ranging in the thousands of dollars every month, many people try to stretch their meds, not taking the prescribed dosage or forgoing the medications altogether.  The result is that the patient may lose his/her new kidney and end up on the only other renal replacement therapy, dialysis.  That patient may also die. 



According to a December 6th, 2017 article in the Washington Post,



“Kidney transplants are universally acknowledged as the best treatment for kidney failure. Compared with remaining on dialysis, transplant recipients live longer, have better quality of life, are more likely to raise a family, have fewer symptoms and incur far fewer health-care costs.

After a successful transplant, keeping the kidney functional requires lifelong use of immunosuppressive medications, which prevent the recipient's body from rejecting the new organ. These medications provide excellent value for money since they allow the patient and society to reap the benefits of kidney transplantation.

As researchers from Canada, we've studied health care for those affected by kidney disease in the United States and other developed nations. Since 1972, Medicare has provided coverage to patients with kidney failure, regardless of age or disability status. However, while there is no time limit for dialysis patients, kidney transplant recipients who are not otherwise eligible for Medicare lose their coverage 36 months after they receive their transplant — leaving many unable to pay for immunosuppressive medications. Without access to these medications, patients eventually lose their transplants and require dialysis treatment instead.[i]”



There are some very good reasons both economically and practically to change the Medicare coverage policy to cover the costs of these meds for the life of the kidney transplant.  Economically, the costs of covering the costs of anti-rejection medications for life makes sense:



·        Kidney Disease is the 9th leading killer in the US;

·        73 million 1 in 3 American adults is currently at risk for developing kidney disease;

·        30 million 1 in 9 American adults is estimated to have chronic kidney disease (CKD), although most don’t know;

·        Over 3 million (11%) of Medicare beneficiaries have a diagnosis of CKD, but not kidney failure and many more are estimated to have the disease, but are undiagnosed;

·        703,243 Americans have irreversible kidney failure, or end-stage renal disease (ESRD), and require dialysis or a kidney transplant to survive;

·        495,433 ESRD patients receive dialysis at least 3 times per week to replace kidney function;

·        207,810 Americans live with a functioning kidney transplant;

·        99,567 People with ESRD died in 2015;

·        19,848 Americans received a kidney transplant in 2017;

·        95,466 Americans were on the kidney transplant waiting list as of January 22, 2018;

·        71% of new ESRD patients apply for Medicare;

·        $98 billion Annual Medicare costs to care for people with all stages of CKD, including kidney failure;

·        $93,064 Annual Medicare spending on a dialysis patient, per-year;

·        $36,389 Annual Medicare spending on a transplant recipient;

·        $2,794 Medicare Part B spending on immunosuppressive drugs, per year transplant patient[ii].

In other words, as a matter of costs alone, it is much less expensive to keep people transplanted, then it is to put them back on dialysis, which Medicare pays for the rest of the dialysis patients’ lives.

According to the Post,



“Since 1972, Medicare has provided coverage to patients with kidney failure, regardless of age or disability status. However, while there is no time limit for dialysis patients, kidney transplant recipients who are not otherwise eligible for Medicare lose their coverage 36 months after they receive their transplant — leaving many unable to pay for immunosuppressive medications. Without access to these medications, patients eventually lose their transplants and require dialysis treatment instead.



This 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 in allowing this situation to exist. All other wealthy nations recognize the benefits of immunosuppressive medications and cover their costs for patients with functioning kidney transplants.



Funding these medications would save hundreds of millions of dollars annually in direct medical costs. Between 2008 and 2012, the most recent data available, the average annual Medicare cost for a transplant recipient was $22,000 compared with $47,000 for a dialysis patient. But those costs are much higher — at $84,000 — for patients who suffered transplant failure and had to return to dialysis. And if you look at only the patients who died after a transplant failure, average costs skyrocket — to $201,000.[iii]”



There is also the humane, ethical, practical issue that must be dealt with:



“Failing to provide lifelong coverage also dishonors the gift of life made by thousands of kidney donors each year, since denying such access means that some of these gifts will be in vain. We estimate that in the past five years, 7,700 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 funding for immunosuppressive medications had been secured.

Even more frustrating, a legislative remedy — commonly known as "the immunosuppression bill" — is already available. Lawmakers first proposed the bill in 2011, but it has repeatedly stalled.

This bill would allow Medicare-eligible kidney transplant recipients to receive life-saving immunosuppressive medications for as long as their transplant continues to function. Ironically, failure to pass this bill into law during the Obama administration may in part be due to its bipartisan support, which gave little political advantage to passing it.

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



In other words, people die because of losing their meds and subsequently their transplanted kidneys and there is a remedy in place that common sense dictates should pass the Congress and resolve the issue.  Most of the major kidney advocacy organizations I’m affiliated with have given up temporarily on this legislation.  This vital issue to kidney patients remains unresolved.







[i] Our Medicare policy for kidney transplants is totally irrational, Marcello Tonelli
John Gil, Washington Post, dated December 6, 2017.

[ii]Figures are from the National Kidney Foundation, Overview of the Kidney Disease Population, https://www.kidney.org/news/newsroom/factsheets/CKD-A-Growing-Problem, Feb 2018.  Their sources include: United States Renal Data System, Centers for Disease Control and Prevention, National Institute of Health, United Network of Organ Sharing and Organ Procurement and Transplantation Network, CDC National Center for Health Statistics, Division of Vital Statistics.

[iii] Our Medicare policy for kidney transplants is totally irrational, Marcello Tonelli
John Gil, Washington Post, dated December 6, 2017.

[iv] Id.


Q & A with CDC Ambassador James Myers

Q&A with CDC Ambassador James Myers

9.27.18




Nearly 40 years ago James Myers was diagnosed with polycystic kidney disease (PKD), which is an inherited form of kidney disease. Because Myers was tested early, he was able to postpone dialysis for 23 years and received a kidney transplant only four years after that.

An Indiana native and attorney, Myers has spent his life engaging in advocacy work on behalf of kidney patients and others living with chronic diseases. Read more about Myers’ passion for advocacy in our interview.

Q: Why did you first become involved in advocacy work?

A: I was in my first year of dialysis in 2012 when the Centers for Medicare and Medicaid Services had threatened to cut services to dialysis centers. This meant that we could lose support staff, nurses, dialysis techs, social workers and dieticians. The people I took dialysis with were very ill, often coming to the center by ambulance, on a gurney or crutches, in walkers and wheelchairs. For all practical purposes they were helpless.

I was an old trial lawyer, a plaintiff’s lawyer, and I did not look over injured people – I helped them. At that moment, I decided I was the only one in that room that could really help them and I accepted my responsibility. I put a petition up on Change.org, l wrote to newspapers, I did interviews, I wrote articles, I joined many kidney organizations and I became active on social media. I learned that I am a kidney advocate and I love fighting for others when they can’t.

Q: When did you first begin experiencing chronic disease symptoms and how did you feel after receiving your initial diagnosis?

A: I’ve lost five members of my family to PKD, including my father. I began experiencing issues after he passed in 1983. I was diagnosed at the age of 25 by a simple X-ray, and at the time, I was a practicing attorney with a wife and a child. Because of my experience with my dad, this news came as a horrible blow to me. My dad died after having battled congestive heart failure, uremic poisoning and dementia, which were all secondary to PKD. I felt that I would die soon.

Q: What inspires you?

A: I’m inspired by my fellow advocates, who lift my spirits every single day. I’m inspired by my fellow kidney patients who fight and never give up. Joy comes to me every time someone receives a transplant. My friends on social media inspire me with their continued efforts to raise awareness. The organizations and their members that I belong to bring me renewed vigor and positive reinforcement. I am learning so much from my fellow advocates within the Chronic Disease Coalition – their perseverance is an inspiration to me.

Q: What is one piece of advice you would offer to others who are battling a chronic disease?

A: Never ever give up, and advocate for others. Next to raising my son, this is the most fulfilling and meaningful thing I’ve ever done. If you are able, help your fellow patients. I live by this motto I have seen on a Facebook meme: “I’m a Kidney Patient the rest of my life, but I still have brain and I still have my voice. Therefore, it is my DUTY to advocate for those who cannot advocate for themselves the rest of my life.”

Q: What is the importance of support groups, both in-person and online? How can newly diagnosed patients find a support group near them?

A: It is very, very important! When I was first diagnosed, I felt very alone, and I think other people feel that way as well. The support groups made me recognize that there were others like me who had battled the disease longer. This gave me hope and others as well. Additionally, support groups can teach you how to more effectively manage your disease and what you can do to make life better. If you need advice or a resource for information, members in support groups can help.

Finding them is easy – Google it, check on social media or ask an experienced friend for help. You will be surprised just how many people and sources can help and how many groups are available to you by simply making a phone call or pushing a button. Groups like this may be in your neighborhood, or as close as your smartphone.