NKF Takes Action in Congress and Makes a Difference!

Capital Kidney Connection, Vol. 9, Issue 3

NKF Takes Action in Congress
and Makes a Difference!

As the 110th Congress comes to a close, we can point to several victories in 2008, thanks to the 6000 volunteers who contacted Congress and made their voices heard. Since launching the Take Action Network in April 2007, we have sent over 15,000 messages to 521 offices—an amazing 97 percent of House and Senate offices heard from people touched by kidney disease!

NKF Public Policy Victories in 2008:

* Pre-Dialysis Education Benefit: A top priority of the NKF, we were successful in passing a new Medicare benefit, which provides up to six educational sessions to help patients learn about dialysis and transplant options, manage kidney disease and adjust to the new lifestyle.
* Other Dialysis Issues: Increased Medicare reimbursement in 2009 and 2010, and an annual update for dialysis providers in future years to account for inflation; early screening and primary care team education about chronic kidney disease (CKD).
* Dialysis Technician Training and Certification: Provided through the new Conditions of Coverage regulations from Medicare.

Related Victories that Help Kidney Patients:

* Gift of Life Congressional Medal for Organ Donors: Provides a congressional medal to honor the Gift of Life made by living donors or the family of deceased donors. Medals may be made available to past donors in the future.
* Increased FDA Funding: Helped secure more funding for food inspections and testing, making the food supply safer for kidney patients, vulnerable populations and the general public.
* Genetic Information Nondiscrimination Act (GINA): Prohibits health insurers from canceling or denying coverage or increasing premiums based on a genetic predisposition to a specific disease. It also bars employers from using genetic information to hire, fire, promote or make any other employment-related decisions.
* Americans with Disability Act (ADA) Amendments: Restores the original intent of the ADA to protect people with a disability and provide reasonable accommodation.

Looking Forward to 2009

When Congress reconvenes in January 2009, it will need to reintroduce any legislation from the previous congressional session that did not pass. New legislation, such as health care reforms, will also be introduced. President-Elect Obama intends to move forward with a health care agenda focusing on prevention and access to care. Already, key Senate leaders have begun developing a framework for reform. We must be ready to respond with the needs of people with kidney disease. In addition to more general health care issues, the NKF will focus on public policy priorities that touch people with kidney disease or organ transplants.

NKF Public Policy Priorities for the 111th Congress:

* Extend Coverage for Immunosuppressive Drugs: Kidney transplant patients have access to Medicare for 36 months post-transplant, but then must rely on private insurance or other means to cover antirejection medications if age or disability makes them ineligible for Medicare. We want to extend coverage for these drugs for the life of the transplant, so that no one loses a transplant because they cannot afford medication.
* Build the Chronic Kidney Disease Program at the Centers for Disease Control: The CDC has initiated pilots in four locations in 2008, and we want to expand these programs, which test high-risk populations for CKD and help primary care teams work with patients in the early stages of kidney disease.
* Improve Access to Early Transplantation: This includes removing barriers to early transplantation referral, increasing living donation and improving the health of CKD patients before transplantation.
* Increase Funding for Kidney-related Research. Funding through the National Institutes of Health supports much of the core research on the treatment and causes of kidney disease.
* Build the Congressional Kidney Caucus. A group of like-minded Members of Congress working together to support kidney patients and legislation.

We will accomplish this and more with the help of the NKF’s People Like Us patient empowerment movement. Whether through e-mails from the Take Action Network, stories in the media or meetings with Members of Congress and other decision makers, we can all help raise the concerns of those touched with kidney disease. We need your help and look forward to working with you in the coming year!
The Road to Advocacy
by Don Brzezinski

(adapted from the NKF of Wisconsin’s Connections,
Summer 2008)

Who would have known that a condition called chronic kidney disease (CKD) could change a person’s life? Here I was at 62, semi-retired, working part-time and at the prime of my life, when during a hospital stay, I learned my kidneys were failing. I was told I had a condition called chronic kidney disease. Diabetes and hypertension were the culprits.

After my hospital discharge, I met with a nephrologist. My visit contained so much information. I remember the nephrologist saying, “You should not use your left arm for any blood withdrawals or blood pressure readings” and some talk about a fistula thing. I thought I was loosing my mind, not my kidneys.

As my CKD progressed, my nephrologist and I began talking about the treatment options available to me when my kidneys failed. My wife and I were encouraged to attend an informational class on CKD and the options for treatment.

To my surprise, I was not the only one attending. A lot of people were there, all patients and their families who have been impacted by this disease. I was not alone.

After the class, my wife and I decided that if I needed to start treatment, in-center hemodialysis was the choice for me. At this point, treatment was so far away that it didn’t even seem real. The following month, I had my first fistula placed. The plan: the fistula would develop in a year or so and then treatment would begin.

Still feeling good, feeling strong and that nothing was wrong with me, I met with my cardiologist. Some medication changes had to be made, but in order to do so, dialysis treatments would have to begin. Who would have guessed that a medication was going to force me to start treatment? The cardiologist felt that this was the “perfect” time to start my hemodialysis since I was still steeling good and had some kidney function. I thought to myself, what good was feeling good and strong going to do me now that my life was over? I thought dialysis was going to take everything away from me. I was wrong.

The day I was scheduled to begin treatments is the day I will never forget: October 26, 2006. My fistula was not fully developed, and we had to come up with another plan of action. Initiation of treatment was critical to my health. It was determined that a catheter would be placed, while attempting another fistula. The second fistula was also unsuccessful, and after a few months, the dialysis team and I began discussing a third fistula. Understanding the importance of a fistula over the catheter, I was willing to try again. I was hoping that the third time was a charm, but it too was unsuccessful. With each disappointment, I found myself losing hope and feeling more depressed.

With the support of my wife, family and dialysis team, I was able to overcome all of my disappointments and focus on the positives of treatment: my life. Over the past several weeks, the third fistula has been working (with the help of some minor surgical procedures) and going strong. It has been 14 months since the placement of my catheter—what a relief to have it finally removed.

I have been on dialysis now for two years. During this time, I still continue to be active with my disease. I have built wonderful relations with my dialysis team and often rely on them for encouragement. With their support and guidance, I keep strong. I continue to work part-time for the funeral home. My job is not work but a service: to be there for others in their time of need, like people were there for me.

No one can truly understand the magnitude of this disease. A special thanks to the dialysis team who continues to give me wonderful care and support.

My journey with CKD is one that has and will forever impact my life; however, none of this would be possible without the love and support from my wife, my best friend. She has stood by me through all the appointments and “disappointments.” She is my rock, and I could not imagine going through this with anyone else but her. It is because of her that I am able to continue my life with dialysis.
Coffee House Conversations

The National Kidney Foundation is offering a series of FREE monthly interactive telephone discussions called Coffee House ConversationsTM to educate and empower individuals affected by chronic kidney disease (CKD), transplantation and donation to be their own best advocate.

Leading the discussions will be a panel of patient and professional experts, speaking on various topics related to CKD, dialysis, as well as organ and tissue transplantation and donation. Presentations will be given in an interactive format, where participants are encouraged to ask questions. For more information on this or future Coffee House Conversations, or to register for this FREE telephone conversation, please call 888.JOIN.NKF!
Congressional Kidney Caucus

As the nation moves into a new congressional term, the National Kidney Foundation (NKF) is strengthening bipartisan support on Capitol Hill by growing membership of the Congressional Kidney Caucus. Established in 2002 to bring together U.S. Representatives to share information and join forces in the fight against kidney disease, the caucus hosts briefings and receptions with groups like the NKF. Currently, it consists of 56 members; we hope to increase that number to at least 100 next year.

At the simplest level, a congressional caucus is a group of members who meet and sponsor events to pursue a common legislative priority. An estimated 26 million American adults have some form of chronic kidney disease (CKD). That equates to about 75,000 constituents in every congressional district. Being that it can affect the entire family, the number of constituents touched by CKD is even higher.

Goals of the Congressional Kidney Caucus:

* Increase awareness in Congress concerning: the impact of kidney disease and its complications on the health and well-being of the American people; opportunities to stem the epidemic of kidney disease in this country, and the need for resources to realize those opportunities; the urgent need for research funding to improve our understanding of the causes and the potential for improvements in the prevention and management of this debilitating disease; the successes and challenges of Medicare's End Stage Renal Disease Program for dialysis patients and transplant recipients.
* Position itself as an advocate for individuals suffering from kidney disease.
* Identify possibilities for addressing kidney disease through public health and other relevant legislation.
* Encourage appropriate federal departments and agencies to play a coordinated role in the response to the epidemic of kidney disease.
* Educate Members of Congress and their staff about kidney disease and its complications.
* Increase awareness of the need for early identification of kidney disease.

Annual Kidney Walks Create Action Steps

Walkers register and learn more about the People Like Us Take Action Network, while they warm up for the NKF Serving Greater New York Kidney Walk.

Cooling temperatures and turning leaves signal the season for the National Kidney Foundation’s (NKF) annual Kidney Walks has arrived. The NKF hosts more than 60 walks throughout the country to inspire community, share experiences and bring awareness to chronic kidney disease (CKD). Walks and other national events are great opportunities for patients, family, friends and businesses to come together to support the millions of Americans with CKD, as well as providing new ways to get involved in the fight against CKD.

Recently, the walks have shown a growing presence of groups like People Like Us and legislative advocacy activities. At the NKF Serving Greater New York’s Kidney Walk in October, the Government Relations Office and Constituent Services Department teamed up to spread the word about NKF’s advocacy opportunities.

A few reasons to walk and become an advocate with the NKF:

* 26 million American adults are living with chronic kidney disease. This is a 30 percent increase over the last decade.
* Millions of Americans are unaware of their condition. Early detection is essential in treating and preventing CKD.
* Nearly 100,000 Americans are currently awaiting a transplant of some kind, including nearly 78,000 waiting for a kidney. Every day 18 people on the organ transplant waiting list die. The NKF is working to change these numbers.
* The NKF offers support services, educational initiatives and materials to more than 26 million American adults with CKD and the 355,000 on dialysis. The NKF has also reached out to those at risk with free screenings to promote early detection.

The People Like Us Take Action Network

In 2008, the National Kidney Foundation’s People Like Us patient advocacy movement continued to grow in strength, numbers, momentum and action. Advocates played a pivotal role in convincing Congress to support increased benefits to the Medicare End Stage Renal Disease Program, which were included in a broad Medicare bill enacted in July 2008. This new law provides education to patients prior to beginning renal replacement therapy so that they are better prepared and informed of options before they begin treatment.

Since the launch of People Like Us in 2005, we have:

* Identified legislative advocates in every congressional district who are willing to send messages to Congress on key kidney issues.
* In 2008 alone, sent over 7,600 messages to Congress and had constituent meetings with more than 150 offices.
* Trained more than 300 People Like Us members to be congressional advocates.
* Participated in numerous congressional briefings and press events to educate staff and the media about the challenges and opportunities facing kidney patients and their families. Below is a summary of the effectiveness and progress of the People Like Us Take Action Network, launched in April 2007.

Registered Advocates on the People Like Us Take Action Network:
People Registered as of January 1, 2008: 3,211
People Registered as of April 1, 2008: 3,428
People Registered as of August 1, 2008: 4,964
People Registered as of December 1, 2008: 6,694

To learn more and join People Like Us, please visit www.kidney.org/patients/plu