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Our Medicare policy on anti-rejection medications is outdated and should be changed.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 6^th, 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 9^th 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.

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

Candid Discussions About Diabetes and Kidney Health

Hurricane Florence and dialysis patients: Why AKF is concerned

What is ARPKD?

Normal kidney vs. polycystic kidney

Are you Kidney Smart? ( Episode #37 )

Help Mary Ashley : Her Story

5th Annual Kidney Patient Summit

From the NKF on SB 1156

May 10, 2018
Senator Ricardo Lara
Senate Committee on Appropriations State Capitol
Sacramento, CA 95814

Re: SB 1156 Health care service plans: 3rd-party payments

Dear Senator Lara,

The National Kidney Foundation is very concerned about SB 1156, which would single out and limit people with end-stage renal disease’s (ESRD) ability to receive charitable assistance to help pay for health insurance. The National Kidney Foundation is the largest, most comprehensive and longstanding, patient centric organization dedicated to the awareness, prevention and treatment of kidney disease in the US. While we do not provide premium assistance to help kidney patients pay for health insurance coverage nor do we counsel patients on the type of coverage they should choose, we do provide factual information and tools to help patients learn about their options and make informed decisions that best serve their unique needs.
We also provide education and resources to kidney health care professionals about health insurance options for ESRD patients.

Unless, significantly modified we believe SB 1156 will result in patients having fewer options for comprehensive, affordable health insurance, and in some cases face substantially increased health care costs. SB 1156 should not single out ESRD patients and limit their ability to receive charitable assistance. To determine Medicare eligibility for ESRD patients an application for Medicare would have to be submitted.

Therefore Section 1 (c) (B), which requires an entity providing charitable premium assistance to annually certify whether a recipient is eligible for Medicare would effectively be forcing all ESRD patients to apply for Medicare. Passage of the Medicare ESRD program in 1972 was a lifesaving change in health policy for Americans with permanent kidney failure. Prior to the benefit most people with kidney failure died having never received dialysis treatment. For those who are eligible, Medicare continues to be the coverage that most ESRD patients choose today.

However, there are many reasons for which a patient may prefer private insurance coverage, including coverage offered through Covered California. Examples of these reasons are:

• the inability to obtain a Medigap policy
• lower costs of private coverage because of caps on out-of-pocket expenses for combined medical services and prescription drugs and the ability to benefit from family coverage and family caps

• access to practitioners that do not accept Medicare (including many mental health practitioners)

• access to benefits that are not covered by Medicare (vision, transportation, hearing aids, etc.)

For most patients with private group health plans, the group health plan remains their primary coverage for the first 30 months of Medicare eligibility due to Medicare Secondary Payer (MSP) rules. Once the 30-month Coordination of Benefits (COB) window closes, Medicare becomes primary and the group health plan secondary.1

However, ESRD patients are not required to enroll in Medicare. Medicare benefits begin upon enrollment.2

The MSP policy for a guaranteed 30-month coordination of benefits period, where private insurance remains primary for ESRD patients, only applies to group health plans. For patients with individual health plans who enroll in Medicare, Medicare is primary the day their Medicare coverage begins.3

Some individual health plans do not pay out benefits secondary to Medicare. Prior to the Affordable Care Act (ACA), very few patients could even enroll in individual health plans if they had ESRD because of pre-existing condition exclusions. The Center for Medicare & Medicaid Services (CMS) has indicated that people who are under 65, not receiving disability benefits, and are enrolled in ACA compliant individual coverage may maintain that coverage.
1 Medicare Secondary Payer Manual, Ch. 1, Section 10.1 (Rev. 87, 08-03-12) 2 Sec. 226A of the Social Security Act; 42 U.S.C. 426-1; 42 C.F.R. § 406.13(c). 3https://www.cms.gov/Medicare/Coordination-of-Benefits-and-Recovery/Coordination-of-Benefits-and-Recovery-Overview/End-Stage-Renal-Disease-ESRD/ESRD.html.

For ESRD patients who enroll in Medicare, coverage generally starts after three months of receiving in-center hemodialysis. For home dialysis patients Medicare coverage starts during the first month they start dialysis and for transplant recipients Medicare

This option is available even if they are diagnosed with ESRD.4 In addition, kidney transplantation and dialysis are essential health benefits and the ACA risk adjustment model includes ESRD to help offset the added costs that health plans will have related to the care of ESRD patients.

Selecting benchmark plans and providing risk adjustment payments are policy decisions that were designed to protect high cost patients with special needs from discrimination via denying benefits or attempting to exclude them from coverage as well as to help insurers balance their risk pools to be able to afford to serve high cost patients.

While Medicare may be the best option for many patients, others may face difficultly affording the health care services they need because California specifically excludes ESRD patients who are under age 65 from enrolling in Medigap coverage. This means that those Medicare beneficiaries who are not dually eligible for MediCal are subject to paying for all Medicare premiums and deductibles in addition to a 20% coinsurance for each dialysis treatment, out-patient office visit, testing, outpatient procedures, immunosuppressive medications, and non-ESRD related injectable medications.

On average a dialysis patient can incur approximately $7,000 or more annually in out-of-pocket expenses just on coinsurance alone for dialysis.5 In addition, Medicare does not cover benefits that patients may have under private insurance and Medicare Advantage plans are not available as an option for dialysis patients unless they were already enrolled in MA before progressing to ESRD, receiving retiree benefits under an MA plan and are grandfathered into that specific plan, or enrolled in a Special Needs Plan (SNP). SB 1156 Should not create a process that delays payment of insurance premiums placing patients at risk of denied or terminated coverage.

Section 1 (c) (3)(A) states that an entity providing charitable assistance must notify the health plan and the Department of Insurance 60 days before a charitable premium payment is made. This could cause a delay of payment which may cause an insurer to terminate coverage or a gap in insurance coverage for the patient. This provision should remove the contingency of notification before a payment is made. SB 1156 should not penalize patients and allow them to be exposed to catastrophic medical bills

Section 1 (d) penalizes the patient for any violations made by the third-party providing charitable assistance. By requiring that provider payments from the insurer are limited to the Medicare reimbursement rates in the face of a violation, patients are being put at risk of being billed charges for healthcare services that are more than that amount.

4 Frequently Asked Questions Regarding Medicare and the Marketplace August 1, 2014, updated April 28, 2016. 5 Methodology: Assumes Medicare reimbursement rate of $230.39 per dialysis treatment (2016 final unadjusted base rate) and that the patient receives 156 treatments per year in an out-patient dialysis facility.

The National Kidney Foundation calls on the Senate to put the rights and interests of ESRD patients first. The Appropriations committee should oppose or further amend SB 1156 to address each of these concerns. ESRD patients should be able to choose among all insurance options available to Californians regardless of whether their financial situation requires them to receive charitable premium assistance.

Sincerely,

Chad Iseman Region
Vice President
Pier Mero ne Executive Director,
Serving the West
15490 Ventura B
Sherman Oaks, CA 91403 |
818lvd 438 .
Ste. 210 8854
| www.kidney.org

PKD ON THE MOUNTAIN

Medicaid work requirements could be disastrous for chronic disease patients and caregivers

Medicaid work requirements could be disastrous for chronic disease patients and caregivers

  

Medicaid work requirements could be disastrous for chronic disease patients and caregivers

Medicaid makes it possible for many low-income people to afford health care they otherwise couldn’t pay for, often because they’re struggling to maintain full-time work, whether from being pregnant, elderly, sick or disabled. Many chronic disease patients who are unable to work or only work part-time because of their condition fall below their state’s designated income level, making them eligible to receive health care coverage through Medicaid.

Unfortunately, the Centers for Medicare and Medicaid Services (CMS), part of the federal department of Health and Human Services, issued a guidance document in January announcing that states would be allowed to institute work requirements for non-elderly, non-pregnant Medicaid beneficiaries. Several states, including Indiana and Kentucky, have already began requesting waivers allowing them to issue these requirements.

This poses grave consequences for patients and caregivers who rely on Medicaid and for the states implementing these changes. Here are three reasons why work requirements are unnecessary and bad for Americans.

1. Most Medicaid recipients are already working if they are able to.

The Kaiser Family Foundation reported that six in 10 adults receiving Medicaid are already working either full or part-time. Those who aren’t working are unable to for reasons such as illness, disability or their role as a caregiver.

One mother in Texas who relies on Medicaid recently explained the challenges of raising her two autistic boys, who require significant help and have unpredictable outbursts that make it difficult to keep a job.

“Even jobs I’ve taken under an explicit understanding of my situation have been tough to keep,” Trish Florence explained in an article on Vox. “It would only take a few weeks of teacher phone calls and leaving work to handle a meltdown before the disapproving looks and casual critical comments started. As much as a manager may understand my unique needs, many businesses find it hard to function without reliable employees. My situation renders me unreliable, through no fault of my own, and so I become essentially unemployable.”

For people like Florence, imposing work requirements would likely cause them to lose access to their health care coverage, making it impossible to meet their families’ essential needs.

2. Work requirements don’t comply with Medicaid’s rules.

According to Families USA, requiring Medicaid beneficiaries to work is illegal.

For one, the secretary of Health and Human Services may be able to waive certain Medicaid requirements, but they are not able to create all new criteria, such as a requirement for recipients to work.

In addition, Families USA noted that the work requirements could implicate civil rights protections under the Americans with Disabilities Act. There are other problems as well.

“Work requirements would increase the ranks of the uninsured and hurt Medicaid enrollees’ ability to work, rather than promote work,” Families USA wrote.

3. Work requirements won’t move Medicaid recipients out of poverty.

One of the main drivers behind the federal government’s guidance is the intention that work requirements will move patients out of poverty.

Yet, an examination of the effectiveness of work requirements in the Temporary Assistance for Needy Families program (TANF) found “the large majority of individuals subject to work requirements remained poor, and some became poorer.”

The TANF study also found that many people who were able to find work were often unable to hold stable employment. For chronic disease patients, this would also be a concern, as the toll of treatment and many daily activities make it difficult to be a successful employee.

While it seems obvious to patients that this policy would have disastrous consequences for Medicaid recipients, our nation’s policy makers need to hear from you. Join the Chronic Disease Coalition as we continue to fight for patients’ access to coverage that works best for them.

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Tags: Medicaid, Patient rights

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Read Patient Stories from The Mighty

  

  

Kidney 4 Doc

This is my new friend, Candie (Doc) Gagne. Her full name is Gitthaline Candie Mulligan Gagne.  She is a Certified Surgical Technologist at UPMC Mikeesport Hospital and Retired Navy Hospital Corpsman, Certified Surgical Technologist.

In December of 2016, Candie broke her ankle and had to have surgery.  By February 12, 2017, she was found unreponsive, with a high creatine level. She had emergency dialysis for the next several weeks and inconclusive kidney biopsy.  Her kidneys did not respond to conservative treatment and she was declared ESRD.

She had a catheter placed and on April 4th, started dialysis. By July 3rd, she was placed on the transplant list. She is also a caretaker for her husband, who suffers from service related partial paralysis of the left leg, A-Fib, CHF, and stage 4 Kidney Failure.

She is listed at the University of Pittsburgh Medical Center (UPMC).  She is an O blood type, but the UPMC recognizes Paired Donation, so any blood type can donate on her behalf. 

To test to donate for Candie you can contact:
1. Her Living Donor Coordinator, Angela Barber at barberas@upm.com or 412-647-5489.

2. Her Administrative Coordinator, is Laurie L. Tub, Administrative Coordinator, UPMC Transplant Services, tubbll@upmc.edu,
412-647-3476 Phone, 412-692-4154 Fax.

3. Nanci McCombs
UPMC Waitlist Transplant Coordinator
‭(412) 432-3050‬
‭(412) 647-5070‬ fax

Please like and share Candi's page, and if you can, share your spare with this Veteran and Life- Saver!

https://m.facebook.com/Kidney4Doc-991655550972880/

Link for donor form at UPMC:  https://livingdonorreg.upmc.com/

Book Review: MORE THAN A CONQUEROR LEGACY

MORE THAN A CONQUEROR LEGACY

A BOOK BY BILL HAHN

REVIEWED BY JAMES MYERS

Available at Amazon.com: https://www.amazon.com/dp/1546992391

ISBN-13: 978-1546992394

ISBN-10: 1546992391

I recently had the great pleasure of reading a book by my good friend and colleague, Bill Hahn. Spiritual, emotional, personal, revealing, this is a good read, even if you are not interested in kidney/organ donation. This book is about one man’s journey from life-altering loss, to near death, to rebirth and making the journey a blessing to others. In his Forward to the book, Congressman Posey’s message says it best: Despite all odds that Hahn encounters, Bill is a tireless advocate for organ donation, and just from his tone, you realize that the Surfpro is a guy that get things done; a bottom line overachiever.

Bill takes great care in telling us his story. This book with its spiritual confessions, videos, poem and even music tells the story in detailed, heartfelt honesty and precision. This is a story about a professional surfer, fit, healthy, competitive, who suffers from kidney failure and subsequent loss. Bill’s pro surfing career was cut short by diabetes. He has been a diabetes warrior for the last 26 years.

During that time period, Bill that he has overcome much in his journey; total blindness, comas, seizures, heart attacks and cancer.

It is in the Christian way that he responds to the drastic changes in his life that makes this book special. Imagine one day your ripping up waves in Florida, and 26 years later you’re in the hospital getting a fistula installed and placed on dialysis due to diabetes followed quickly by End Stage Renal Disease.

Time passes, once, twice he is called for a new kidney, only to be turned away. But the third time, Bill gets THE CALL!

In Bill's own words,

"My first CALL I said NO. The reality that some had passed hit me as I needed both a kidney and pancreas transplant. By the second CALL I realized God has a plan for each of us so I said YES but the organs had been compromised and my gift of life was put on hold. Call number three was the miracale. GODS PLAN."

His New Year’s Miracle came at the age of 52, and he became a Kidney/Pancreas Warrior, advocating in God’s name and his donors name. He is reborn, transplanted, given back to us. 9 years and counting, Bill has been given new life. He calls this his New Year’s Eve Miracle, a gift from God. Prayers answered, Bill has become a world class Kidney/Organ Donation Advocate. He has done much to honor his New Gift of Life, Including:

• The Annual Footprints in the Sand Kidney Walk for the National Kidney Foundation of Florida;

• The Starfish Donor Mom Tribute Dinner;

• Helping Dialysis Patients Understand They are not Alone;

• Inspiration for Those That Have Just Received a Donated Organ;

• Establishing May 13th as Florida Living Donor Day;

• Building Sand Castles of Hope with pediatric kids and families;

• Writing the Song, Surfer’s Story, Now in the Library of Congress;

• Bill’s Mother and Father are responsible for the Dedication of the Hahn House Museum in Wisconsin, Bill continues to protect that legacy;

• Bill’s Mom and Dad are responsible for the Dedication of the Great Sauk State Trial and having it placed on the National Registry of Historic places, Bill continues to protect that legacy

• Bill is responsible for the creation of Life River Walk to be completed in 2018, that is adjacent to the Hahn House.

Bill has dedicated his life to others. This book, much like the man, is an amazing testament to his determination, hard work and faith. It is sensitive and inciteful. Just check out all the You Tube videos that go with each and every chapter of this book. Prayers, music, interviews, poems, and live events, showing the heart and soul of this Christian Kidney/Organ Donation Advocate. The strength, selflessness and sensitivity to the needs of others are the essence of Bill Hahn.

Bill teaches us,

"Godspeed to all those waiting. Gods grace to all who receive the Call."

This book is a vivid reflection of this great man.

Patient rights, third-party payments and the CMS Request for Information

Patient rights, third-party payments and the CMS Request for Information

FOR IMMEDIATE RELEASE
Statement from LaVarne A. Burton, American Kidney Fund President and Chief Executive Officer
ROCKVILLE, Maryland (August 19, 2016) -- The August 18 Request for Information from CMS with regard to possible inappropriate efforts by providers of dialysis services to steer patients eligible for Medicare and Medicaid into marketplace insurance plans paid for by third parties raises two critically important but distinct issues:

• First is the legitimate concern expressed by CMS of possible inappropriate steering of patients into insurance marketplace plans. We believe it should always be the patients’ choice to select the insurance plans that best meet their health care needs—and patients need to be fully aware of the pros and cons of each insurance option.
• But second, it is critically important to emphasize that people with disabilities in general—and with end-stage renal disease (ESRD) in particular—should not be broadly excluded as a class from the insurance marketplace if they are unable to afford their health insurance premiums.

We agree with CMS that everything that can be done, should be done to prevent steering. But we do not agree that charitable assistance for the payment of insurance premiums is the problem—many low-income, chronically ill patients (many of whom are disabled) depend on charities to help pay for many of their expenses, including health care expenses. Cutting off this assistance at the behest of insurers would be particularly callous and would harm some of our nation’s most vulnerable people.
For 45 years, the American Kidney Fund (AKF) has provided charitable assistance to low-income dialysis patients to help them pay health care costs, including the insurance they need to access lifesaving care: Medicare Part B, Medigap, commercial, COBRA, employer group health and, since the passage of the Affordable Care Act, insurance marketplace policies, though they represent a small fraction of our patient assistance—just 6,400 of the nearly 80,000 people we currently help.
CMS has made very clear in the past that ESRD patients who are eligible for Medicare may enroll in the Marketplace, so long as they choose not to enroll in Medicare. When CMS provided this option for ESRD patients to enroll in the Marketplace, its intent could not have been to effectively exclude any ESRD patients who could not personally afford the cost of premiums. Even with subsidies, premiums can be prohibitively expensive for the population we serve—a population that is overwhelmingly unable to work because of their medical condition. AKF has always been a safety net for our nation’s low-income dialysis patients, and under the ACA, our premium assistance makes Marketplace plans an option for low-income ESRD patients who are fighting for their lives.
Some have asked why an ESRD patient who is eligible for Medicare would choose a Marketplace plan in the first place. Choice of insurance is a personal matter, but the reasons are many. First and foremost, Medicare alone is not enough to cover medical costs for people living with ESRD. A supplemental plan is necessary to cover the 20 percent out-of-pocket costs that have no lifetime cap under Medicare. In about half the states, insurers are not required to offer Medigap to ESRD patients under age 65, and ESRD patients in all states are prohibited by law from enrolling in Medicare Advantage plans which provide comprehensive coverage. For these patients, a Marketplace plan may very well be the best option to cap out-of-pocket costs and to achieve effective coordination of care. In other cases, even if Medigap is available, a patient may choose a Marketplace plan because Medicare does not offer family coverage, or because the person seeks better access to transplantation, or because the physician network offered under the Marketplace allows the person to continue seeing the same doctors they saw before they became ill. The reasons are many and cannot be distilled down into a black-and-white declaration that people with ESRD belong on Medicare.
For us, the patient is always the focus, and the effect on patients is what we care about—not insurance companies or dialysis providers, and not CMS—but the people those institutions are meant to serve. All ESRD patients must have access to the care they need to stay alive. The goals of preventing steering—with which we agree—and preserving choice for low-income patients are not mutually exclusive.
For nearly 20 years we have continuously reviewed our program to ensure that our guardrails protect its integrity. That’s even more important in the changing health care landscape. We look forward to working with CMS to assess whether there is inappropriate activity and if there is, how to best bring it to a halt. At the same time, this must occur without penalizing low-income ESRD patients by cutting off their access to an insurance option that, in some cases, may be their best choice.

MORE THAN A CONQUEROR LEGACY: BOOK REVIEW

 

 

 

 

 

 

 

 

 

MORE THAN A CONQUEROR LEGACY

A BOOK BY BILL HAUN

REVIEWED BY JAMES MYERS

 

ISBN-13: 978-1546992394

ISBN-10: 1546992391

 

          I recently had the great pleasure of reading a book by my good friend and colleague, Bill Hahn.  Spiritual, emotional, personal, revealing, this is a good read, even if you are not interested in kidney/organ donation.  This book is about one man’s journey from life-altering loss, to near death, to rebirth and making the journey a blessing to others.  In his Forward to the book, Congressman Posey’s message says it best:  Despite all odds that Hahn encounters, Bill is a tireless advocate for organ donation, and just from his tone, you realize that the Surfpro is a guy that get things done; a bottom line overachiever.

         

          Bill takes great care in telling us his story.  This book with its spiritual confessions, videos, poem and even music tells the story in detailed, heartfelt honesty and precision.  This is a story about a professional surfer, fit, healthy, competitive, who suffers from kidney failure and subsequent loss.  It is in the Christian way that he responds to the drastic changes in his life that makes this book special.  Imagine one day your ripping up waves in Florida, and days later you’re in the hospital getting a fistula installed and placed on dialysis due to diabetes followed quickly by End Stage Renal Disease.  

 

          Time passes, once, twice he is called for a new kidney, only to be turned away.  But the third time, Bill gets THE CALL! He is reborn, transplanted, given back to us. 9 years and counting, Bill has been given new life.  He calls this his New Year’s Eve Miracle, a gift from God.  This blessing reminds Bill that he has overcome much in his journey; total blindness, comas, seizures, heart attacks and cancer. Prayers answered, Bill has become a world class Kidney/Organ Donation Advocate.  He has done much to honor his New Gift of Life, Including:

·        The Annual Footprints in the Sand Kidney Walk for the National Kidney Foundation of Florida;

 

·        The Starfish Donor Mom Tribute Dinner;

 

·        Helping Dialysis Patients Understand They are not Alone;

 

·        Inspiration for Those That Have Just Received a Donated Organ;

 

·        Establishing May 13^th as Florida Living Donor Day;

 

·        Writing the Song, Surfer’s Story, Now in the Library of Congress;

 

·        Responsible for the Dedication of the Hahn House Museum in Wisconsin;

 

·        Responsible for the Dedication of the Great Sauk State Trial and Life River Walk to be completed in 2018.

 

Bill has dedicated his life to others.  This book, much like the man, is an amazing testament to his determination, hard work and faith. It is sensitive and inciteful.  Just check out all the You Tube videos that go with each and every chapter of this book. Prayers, music, interviews, poems, and live events, showing the heart and soul of this Christian Kidney/Organ Donation Advocate. The strength, selflessness and sensitivity to the needs of others are the essence of Bill Hahn. This book is a vivid reflection of this great man.