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Our Medicare policy on anti-rejection medications is outdated and should be changed.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.