Past Issues
Summer 2005
DC Trip Patient
Quotes
Lisa Brandt
“The most memorable thing about our trip to Washington, DC, was meeting with my
senator, Norm Coleman (R-MN). He is very nice, down-to-earth, and cares about
people. He allowed us to take a picture with him and wished us good luck. I was
so nervous, but there was absolutely nothing to be nervous about. He became a
cosponsor!”
Rhonda Brooks
“The aide I was talking to seemed quite disinterested until I told her that my
kidneys were knocked out by ibuprofen. Only minutes earlier this woman had taken
ibuprofen. She almost broke her arm taking that travel-size packet out of her
pocket! While she’s trying to read the packet with her fingers shaking, I took
the opportunity to explain that one in nine Americans have kidney disease and
don’t know it, and this is an example of why they should be educated and why we
need this bill.”
Jennifer Castillo
“The sheer excitement of walking into our first visit made the trip worthwhile.
We were treated very well and welcomed as if we were old friends getting
together after a long absence. Representative Walter Jones (R-NC) was patient,
warm and understanding. Most surprisingly, he had done his homework and was not
only knowledgeable about the legislation, but had also visited a dialysis unit.
He was immediately engaged in the visit and empathetic about the existing and
future needs of patients. He agreed to sign on as a cosponsor that afternoon,
and did so as promised. It is especially exciting to realize I can be more
involved in a process that I frequently feel overwhelmed by and removed from.”
John Derrig
“All our senate and congress folks had young, smart, good people working in
their offices. Most were informed about our issues and wanted to take our views
to their senator/congressperson. OUR representatives are listening. And I now
know what is meant by ‘the halls of Congress,’ because by the end of the day it
had been a long walk!”
Shari Gilford
“The legislative aide for Senator Schumer (D-NY) expressed surprise to learn
that I not only did my own hemodialysis treatments at home, but had also become
a certified dialysis technician in New York State. I think she saw that patients
really do want to be involved.”
Amy Hackney
“The weKAN trip to DC was wonderful. As a patient I truly felt that I was
helping to make a difference in the lives of fellow patients. As a transplant
patient, I was excited to be healthy and able to lift my voice to help others. I
am very grateful to be a part of an organization that allows me the opportunity
as a patient to be heard.”
Terri Melvin
“As a kidney patient I have often been held back from ‘just doing’ because of a
feeling
of being less than adequate. This trip proved to me that that is no longer true.
Meeting congressmen and their aides gave me a feeling of ‘being someone’ very
capable and knowledgeable. I had such a feeling of empowerment. It gave me
peace. The icing on the cake was in knowing that we were making a difference in
peoples’ lives for the future, which only helped to validate my life a little
more. And for that I will be forever grateful.”
John Newmann
“The experience of fine, well-organized training, getting to know each other
better, and a very productive day of visits on Capitol Hill brought back
memories from over 20 years ago when I first began doing this. The big
difference: patients with little or no experience in lobbying worked very hard
beforehand, arranged their own visits, were well prepared, and accomplished so
much. RSN and weKAN showed how commitment, organization, and a light and joyful
approach make a huge difference. One congressional staff person told me:
‘Patients tell the truth – that’s why we listen to them.’”
Heather Powell
“Washington, DC, was a truly awesome experience. Talking with our
representatives about an issue that is so near and dear to one’s heart and
feeling like we were making a difference really leaves one feeling empowered. I
talked with the aide that works for Senator Pryor (D-AR). We had met before and
had toured a dialysis facility in Little Rock. This time, however, our meeting
hit a little closer to home – her doctor had told her that if she did not lose
weight, she was a prime candidate for diabetes. Our discussion turned toward
diabetes and high blood pressure, the leading causes of kidney disease. She
acknowledged the need for better education before dialysis becomes necessary, an
issue the bill addresses.”
Leigh Anne Tanzberger
“When Amy Hackney, my father, and I just happened to walk into the offices of
Representative Sessions and Representative Green of Texas to pitch the bill –
and then to find later that one of them had immediately signed on as a cosponsor
– was so powerful. We did not even have an appointment, but he signed on based
on the merits of the bill. Congratulations to everyone who was in DC, and to
Lori for planning the trip and believing in us all!”
The New Medicare Prescription Drug
Plan
It’s coming soon! Starting January 1, 2006, Medicare will be offering plans to
help you pay for prescription drugs. This is the Medicare Prescription Drug
Benefit, Part D, that you might have heard about.
The wheels start turning on November 15, 2005. Beginning
on that date, anyone covered by Medicare can join a Medicare prescription drug
plan. The wheels stop turning on May 15, 2006. After that date, you can still
join a plan but it will cost you more.
It is important to know that the upcoming drug plans are
not the same as the drug discount cards that you might currently have. The
discount cards were only a temporary measure until Medicare Part D kicked in,
and they will expire on May 15, 2006.
Confused? You’re not the only one. The most important
thing to remember is that you have to do something, and it would be to your
advantage to do it by May 15.
To help ease the confusion (or, possibly, to help add to it), Medicare will be
sending you a handbook in the mail this fall – Medicare & You 2006 – that will
list the Medicare prescription drug plans available in your area.
You also will be able to get free, personalized information at www.medicare.gov,
or by calling 1-800-MEDICARE (1-800-633-4227) to help you choose a plan that
best meets your needs. Your State Health Insurance Assistance Program (SHIP)
also can provide free, personalized counseling about the plans. Call
1-800-MEDICARE to get the telephone number of the SHIP nearest you.
Don’t forget to check with your healthcare team. They can help you choose the
plan that’s right for you.
More Frequent Dialysis
by John Derrig- weKAN Patient Activist
A new bill introduced in Congress by Rep. Jim McDermott
(D-WA) – the Kidney Patient More Frequent Dialysis Quality Act of 2005 – will
increase reimbursement for people who could benefit from more frequent dialysis
treaments.
If approved, this bill will allow the Medicare Program to
pay for up to five hemodialysis treatments per week for qualifying patients
either at home or in a facility, as well as payment for in-facility training for
more frequent hemodialysis. It requires the clinical judgment of a physician to
determine whether the individual is likely to achieve better clinical outcomes,
quality-of-life outcomes, or both from more frequent hemodialysis. Many patients
who dialyze more frequently experience a decrease in medications, a decrease in
hospital admissions, and an increase in overall health.
The bill also directs the Secretary of Health and Human
Services to periodically review and update quality standards for more frequent
hemodialysis, and to collect data and document savings in expenditures due to
the improved health of patients.
Write to your representative and ask him or her to
cosponsor HR 3096.
RSN Brings “Health, Happiness & Hope” to
the Windy City
Take a genuine desire for Health, an atmosphere of Happiness, and the power of
Hope, combine it with kidney patients and family members from around the
country, and you have the 2nd Annual Renal Support Network (RSN) National
Patient Meeting, to be held September 29 to October 1 in Chicago.
With “Health, Happiness & Hope” as the theme, the meeting
will emphasize the RSN tradition of patients helping patients. Speakers include
patients who have chosen to view kidney disease as an obstacle rather than a
deterrent. Some of the topics they will discuss include returning to work, being
a full-time parent while on dialysis, and how to nurture a positive attitude
when life is tough.
“An illness is too demanding when you don’t have hope,” emphasizes Lori
Hartwell, President and Founder of RSN. “Our mission is to help provide that
hope and help reassure these people that they are still of great value despite
having kidney disease.”
Healthcare professionals will also lead sessions on a
variety of topics including fad diets (from a renal perspective), connecting
with your physician, and new trends in transplantation. An informative panel
discussion by patients and professionals will explore various home dialysis
options now available.
This marks the second consecutive year that the RSN will be holding its annual
meeting side by side with the annual conference of the National Renal
Administrators Association (NRAA), making it the only concurrent national
gathering of kidney patients and professionals in the United States.
“Sometimes we lose sight of our common objective – quality
care in the dialysis facility and a quality life for the patient,” explains
Lori. “This meeting provides a nice crossover between the patient and healthcare
professional.”
Joint sessions with the NRAA will focus on topics of mutual interest, and the
NRAA vendor exhibit hall will be open to RSN attendees. Friday night
entertainment will feature Jamie Gilbert (a.k.a. Jamie-G), a renowned Canadian
magician who is currently on dialysis.
”Health, Happiness & Hope” will educate patients and
family members about chronic kidney disease (CKD), provide them with hope for a
better tomorrow, and inspire them to achieve their goals.
Echoing the sentiments of many of last year’s attendees,
one patient commented, “Saying goodbye was the hardest part. I had made many new
friends who are going through the same things as myself. I hope to stay in
touch, and see them all at the next meeting.”
Come to this year’s meeting and meet these inspiring
people yourself!
Success On Capitol Hill
by Shari Gilford-
weKan Patient Activist
The bright sun sparkled through the windows of the hotel meeting room where we
had gathered for breakfast. The shared sense of anticipation that permeated our
thoughts and conversations mirrored the sun’s exuberance. Excited chatter filled
the air.
This day – Tuesday, June 14, 2005 – marked the culmination
of months of preparation. Today, 20 kidney patients, some joined by family and
friends, would make a difference on Capitol Hill. Our mission: to convince our
senators and representatives to become cosponsors of the Kidney Care Quality and
Improvement Act of 2005.
Arriving on Capitol Hill in small groups, we braved the
sweltering heat for a moment before entering the Senate and House buildings.
Armed with information packets, gifts, and our knowledge (none of which set off
any alarms when we passed through security), we courageously navigated the long,
high-ceilinged hallways. The marble floors echoed with our footsteps. This was
unfamiliar territory for many of us, but we walked confidently. We were well
prepared.
One of the goals of Lori Hartwell, a kidney patient
herself and the Founder/President of the Renal Support Network, is to equip
patients to advocate for themselves and their fellow patients. She formed weKAN
– Wellness and Education Kidney Advocacy Network – to meet this goal. A
cross-section of weKAN members were about to leave their mark on Capitol Hill.
weKAN “patient activists” learn how to become leaders in the kidney community
through monthly conference calls, educational events, involvement in their local
area, and relationships with other self-motivated kidney patients across the
United States.
“I view the patients in weKAN as leaders, and as future
leaders,” Lori explains. “Some of them have been successful at taking charge of
their own healthcare for 20 or 30 years. But it’s no longer about advocating
only for their own care, it’s about advocating for others. It’s about patients
helping patients. That’s what sets us apart from other organizations.”
Our preparation began several months prior to our arrival
in Washington, DC. During monthly conference calls we learned how to contact our
elected officials and set up face-to-face meetings. A sample script helped us
organize what to say. We practiced how to introduce ourselves, tell our story,
stay focused on our message, and intelligently articulate the main points of the
bill. The results of this excellent training would soon be determined.
Though we did visit with some senators and
representatives, the majority of our appointments were with congressional aides
specializing in health legislation. Young and intelligent, these aides were
eager to hear our stories and understand how the Kidney Care Quality and
Improvement Act of 2005 would help us personally.
One key aspect of the bill would guarantee an annual
increase to the amount paid by Medicare for each dialysis treatment – the
Medicare composite rate. To underline the importance of this aspect of the bill,
many of us stated, “I’m living proof that the Medicare program works!” (See a
summary of the bill on page 6.)
By the end of that busy Tuesday, 20 kidney patients, representing 16 states,
completed a total of 55 appointments. We met in cramped offices, large
conference rooms, hallways, and at a table in a noisy cafeteria (while munching
on popcorn). The relaxed atmosphere coupled with the genuine interest of those
to whom we spoke strengthened our confidence in ourselves and in our message.
Many weKAN members had never previously contacted an
elected official. “They discovered how to step out of their comfort zone for the
benefit of others,” Lori stated proudly.
The results? Eight
members of Congress became cosponsors of the bill that day. At least 20 other
members of Congress or their aides expressed greater interest in cosponsoring
the bill – which was a feat in itself, we were told. The Washington lobbyists
who were aware of our visits emphasized their amazement at our accomplishments.
Our energy, professionalism, and unusual degree of success had greatly exceeded
their expectations! We made a difference!
Author’s Biography
Shari Gilford was diagnosed with kidney disease in 1977 at age
eleven. While she awaits a third transplant, she does her own hemodialysis
treatments overnight in her home. She pioneered a newsletter for her local
dialysis clinic and was also trained as a dialysis technician.
Summer Diet Tips from a
Pro
by Leigh Anne Tanzberger- weKAN Patient Activist
As a dialysis patient growing up in New Orleans (“Fat City”) – where all people
do is eat, drink, and go to restaurants – I have learned a few “tricks of the
trade” over the past 20 years because, I must confess, I am no different than
anybody else . . . I love to eat out!
When I go to a restaurant, I always ask for my drink with
extra ice. The ice takes up space, so there is less liquid to drink. I also use
my straw to drink more slowly. I put the straw in my drink, plug the top of the
straw with my finger, and then drink the little bit of liquid inside the straw.
Depending on what I order, I ask for no added salt. You
will still get some sodium when you eat in a restaurant, but by eliminating any
added salt you can at least decrease your total sodium intake.
Although I really like to eat out, I usually limit it to
once a week. If you eat out more often, find places that will give you some good
low-sodium options, and remember which menu items would be best to choose.
Some other tricks I’ve learned:
- I stay away from potato chips, Cheetos, nuts, and
other salty snacks because they make me more thirsty. And when I drink too
much, the fluid I retain causes my next dialysis session to be harder on my
body.
- I do not ADD salt to my food at all! If I want some
added flavor, I use spices. Be creative and experiment with new flavors.
- Frozen grapes are a very refreshing treat that will
help quench your thirst.
- I really enjoy Popsicles on hot days. Each Popsicle
stick (the singles, not the doubles) is only 1 to 2 ounces of fluid.
- Another idea is to fill an ice cube tray with your
favorite drink – iced tea, lemonade, Kool-Aid, or Crystal Lite if you’re
diabetic. You can then suck on one of these flavored ice cubes to quench
your thirst rather than drinking a full glass of liquid.
- Other dialysis patients I’ve known over the years
recommend sucking on some hard candy. Sour balls, Lifesavers, or sugarless
hard candy can help quench your thirst.
- My personal trick, however, is to drink a small “ICEE”.
Since it’s frozen, you are drinking only about half the amount of fluid that
you think.
- Finally, if nothing else works, sucking on a lemon
wedge will always quench your thirst!
Use my “tricks of the trade” and enjoy these hot summer
months without being too restrictive. Experiment with creative ideas and share
them with your fellow dialysis patients!
Author’s
Biography
Leigh Anne
Tanzberger began dialysis in 1978. A transplant she received in 1981 failed
four years later since the disease she has is reoccurring. Since 1985 she has
performed various modalities of dialysis. In 1993 she earned a degree in
Management and Marketing from Rutgers University – School of Business. Among
other accomplishments, she has served as president of the New Orleans Kidney
Patient Association. Since moving to Texas, she became the first patient to be
invited to sit on the Board of Directors of the Texas Renal Coalition.
Talking With Congress
– It’s Not Really That Scary
Most of us probably think of members of the U.S. Senate and House of
Representatives as being out of reach. After all, they are very important
people, responsible for passing the laws that govern this land.
As it turns out, members of Congress have great respect
for the “everyday” person who approaches them. And when that person is a patient
– whose very life may hang in the balance of pending legislation – even more
respect is paid. This became clear when 20 weKAN “patient activists” and family
members recently visited Washington, DC.
The weKAN members – who arranged each meeting themselves –
were there to gain cosponsors for the bipartisan Kidney Care Quality and
Improvement Act of 2005 (see sidebar). Perhaps as important as gaining
cosponsors to the bill, the patients made a personal connection with their
elected officials.
Members of Congress serve at the pleasure of their
constituents, and they want to know your concerns. For that reason, it is
important that you contact them regarding the Kidney Care Quality and
Improvement Act of 2005 and ask them to cosponsor this bill.
The Renal Support Network (RSN) has made this easy. Simply
go to www.renalnetwork.org, and click on “Act Now! - Kidney Care Quality and
Improvement Act of 2005.”
You will be led through “Easy Steps to Have Your Voice Be
Heard,” consisting of a summary of the bill, identification of your elected
officials, ways to contact them in both Washington, DC, and your home state, and
a series of sample letters and scripts for phoning, writing, or scheduling
visits. If you do not have Internet access, please contact RSN at (818) 543-0896
and we will provide you with any information or materials you may need.
A great time to contact your representative and senators
in your home state is during August, when Congress takes a recess. Always
remember, you are the key to helping lawmakers understand the realities of
kidney disease. You are, in fact, the expert.
The
“Cookie Lady”
by Dawn Dungan, weKAN Patient Activist
How many cookies does it take to get from Hawaii to Denver, the site of last
year’s annual Renal Support Network (RSN) National Patient Meeting? To find out
the answer, we asked Marsha Hatakeyama, the official “cookie lady” and fellow
member of weKAN.
Marsha lives in Kailua-Kona, Hawaii, and is a full-time
single mom of two girls – Jennifer (9 years old) and Ashlynn (13 years old). She
is a kidney-pancreas transplant recipient. While the pancreas transplant was
successful, the kidney rejected and Marsha had to go back on dialysis.
It was during a dialysis treatment in August 2004 that she
first heard about RSN’s National Patient Meeting (held last September). Lori
Hartwell, president of RSN, had visited Marsha’s dialysis unit while on
vacation. Nearing the end of her visit, Lori met Marsha and handed her a
brochure about the meeting. Marsha recounts, “We talked about it for a little
while and I said to Lori, ‘I don’t know how I’m going to get there, but I’m
going.’”
Marsha kept in touch with Lori by telephone and e-mail
about the upcoming patient meeting. These conversations fueled her determination
to somehow get to Denver. She shared with friends and family members her desire
to attend the conference, which prompted a family friend to generously donate
her personal frequent flyer miles to Marsha.
Marsha still needed money for other costs such as the
registration fee, hotel reservation, and food. “Unless a bundle of money fell
from the sky, my trip just wasn’t going to happen because of the time frame,”
Marsha said with a laugh. “I knew I had to do something.”
That was when the cookie idea was born. Marsha’s mom likes
to bake cookies, so Marsha asked if she would help bake cookies to raise money
for the trip. With a time frame of only two weeks before she needed the money,
Marsha, along with her two daughters and her mom, baked cookies, cookies, and
more cookies!
“We started at 6 o’clock in the morning on Saturday and we
baked, cooled, and packaged cookies until 1 o’clock in the morning on Sunday
both weekends in a row,” Marsha reported.
They made chocolate chip, shortbread, peanut butter,
oatmeal raisin, and oatmeal chocolate chip cookies. They sold the cookies by the
dozen to family members, friends, and kidney patients.
One fellow patient who doesn’t bake anymore bought 25
dozen and gave them away as gifts. Another bought eight dozen and put them in
the freezer for when her grandchildren visited.
Marsha and her family baked 125 dozen cookies each weekend
for a grand total of 250 dozen cookies baked and sold! So, how many cookies does
it take to get from Hawaii to Denver? 3,000! That’s a lot of cookies!
So, was it worth all the effort? Marsha quickly replied, “Oh, definitely! I will
be baking my cookies again this year. I will start in the summer so I don’t have
to cram all that baking into two weekends. That was a lot of work.”
Marsha added excitedly, “I look forward to being there every year. I’m just
hoping it will be in Hawaii one year.” So do we, Marsha.
And with her perseverance, determination, and enthusiasm,
who knows?
Author’s Biography
Dawn Dungan is a kidney transplant patient. Her 20 years of experience with
kidney disease influences her work as the patient activist coordinator for
weKAN. She has a degree in English and does freelance writing. As a public
speaker, she focuses on kidney disease, diabetes, and death/dying. She and her
husband live in Billings, MT.
weKAN and We Did!
by Lori Hartwell, weKAN President
One of my favorite Chinese proverbs is, “Tell me and I’ll forget, show me and I
may remember, but involve me and I’ll understand.” This quote is a roadmap to
patient involvement.
Mapping out the plan for weKAN “patient activists” to
visit Capitol Hill was a first-time experience for Renal Support Network (RSN).
Knowing it was imperative to involve these intelligent patients in the process,
RSN scheduled interactive conference calls to provide a forum for questions and
input. The training materials created from this information would help patients
become successful as effective spokespersons and advocates on behalf of fellow
kidney patients.
The goal was simple – for each patient to make a personal connection with his or
her elected officials and to enjoy the experience. In addition, we aimed to give
the patients the tools they needed to succeed in advocating for the Kidney Care
Quality and Improvement Act of 2005 on Capitol Hill. Ultimately, we wanted more
members of Congress to cosponsor the bill.
Scheduling an appointment and meeting with members of the
U.S. Congress can be intimidating to most, but long-term kidney patients already
have the skills to be effective advocates. After all, they have had to learn how
to be persistent when talking to busy doctors, or when navigating complex
insurance issues.
The weKAN patient activists are a very special group of individuals; many of
them took time off from work or left their families to make the trek to DC. They
are a volunteer “sales force.”
As I reflect back on my days as a sales manager, I
remember how imperative it was that I believe in and understand my product.
Otherwise, the results could be disastrous. After a difficult sales meeting I
would feel defeated, upset that I had not done my best.
It was also imperative that I involve the customer – in
this case, the elected official. Real-life demonstrations generate interest. One
of the patient activists on peritoneal dialysis explained that there is a
special solution in her peritoneal cavity, and she was dialyzing at that moment.
Another patient activist showed her dialysis access, a fistula, and informed the
legislator that this was her “lifeline.”
At the time of this printing, the Kidney Care Quality and
Improvement Act of 2005 has 90 cosponsors in the House of Representatives and 11
cosponsors in the Senate. If you want to learn more about H.R. 1298 and S. 635,
keep reading this issue of Live & Give! For more information, visit our website
at www.renalnetwork.org.
I encourage you to get to know your elected officials so
that they can understand the needs of kidney patients by learning about you. If
you would like to contact them, either in writing or in person, and need
assistance, give us a call. We would be delighted to help you!
Since I began with a quote, it seems appropriate for me to
end with a poem that epitomizes our organizational philosophy:
Did is a word of achievement
Won’t is a word of retreat
Might is a word of bereavement
Can’t is a word of defeat
Ought is a word of duty
Try is a word each hour
Will is a word of beauty
Can is a word of power
– Anonymous
Chronically Yours,
Lori Hartwell
President and Founder of Renal Support Network
