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RESEARCH
The Leukemia &
Lymphoma Society Launches Quality of Life
Research Initiative
READ MORE
LLS and Forma
Therapeutics Enter Collaboration to Bring New
Therapies to Patients Faster
READ MORE
LLS Funded Researcher
Janet Rowley, MD, Receives Presidential Medal of
Freedom READ
MORE
Q&A with Nicola
Camp, Ph.D., Department of Biomedical
Informatics, University of Utah School of
Medicine READ
MORE | |
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PATIENT
SERVICES
Ohio Nurse Leads Successful Book
Club
Volunteer Chris Krall,
RN, BSN, OCN, Runs Cancer Survivors Book
Club
READ
MORE
September is Leukemia,
Lymphoma and Myeloma Awareness
Month
READ MORE
New LLS
Online Support Groups READ MORE
New Co-Pay Assistance
Online Application
READ
MORE
New Online
Blood Cancer Resource Directory
READ MORE
Upcoming
Teleconferences
READ
MORE
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FUNDRAISING
UPDATES
Team In Training (TNT)
will be offering some exciting new venues for
its spring season
READ MORE
Peter Howson Honors
Nephew's Battle with Leukemia by Sailing in The
Leukemia Cup Regatta
READ MORE
Students Join Fight
Against Blood Cancer
READ MORE
ADVOCACY
Comprehensive Cancer
Care Needed Now
READ MORE
FROM THE
LLS BLOG READ MORE
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 The Leukemia &
Lymphoma Society Launches Quality of Life
Research Initiative
The cure
rates for many cancers have improved
dramatically over the past decades, but
the harsh reality is that too many cancer
survivors suffer serious side-effects of their
curative treatments. Toxic side-effects can
occur months or years after the treatments are
finished, sometimes as chronic conditions,
sometimes life-threatening, but always
unacceptably reducing a patient's quality of
life.
While waiting for ongoing research
to discover new safe and effective drugs, what
patients need now is for current therapies to be
made less harmful without sacrificing their
effectiveness. We know this can happen because
careful research has made it happen for children
diagnosed with acute lymphocytic leukemia.
High-dose radiation treatments, once thought
critical to cures, have been eliminated for most
children, individualized as needed based on
sensitive prognostic tests. Cognitive deficits
and other once common side-effects have been
significantly reduced and survival rates have
actually increased, to nearly 90%, due in part
to reduced toxicities. In another example, a
treatment that functions as an antidote can
safely reduce the risk of heart damage caused by
a class of drugs commonly used in pediatric
cancer treatments, without reducing the curative
power of those treatments.
If we could
reduce the long-term and late effects of the
rest of today's effective therapies, more cancer
patients, of all ages, could live full lives. In
a new initiative, The Leukemia & Lymphoma
Society (LLS) will invest in research designed
to discover the biological mechanisms that cause
late effects, and to develop and test measures
to prevent or at least significantly reduce
toxicities. Only then will today's treatments be
fully available to all of the patients who need
them.
Anna T. Meadows, M.D., medical
director of the Cancer Survivorship and Living
Well After Cancer Program at the Children's
Hospital of Philadelphia, is helping to lead
LLS's effort. Meadows is an internationally
recognized pioneer in late effects research; she
helped quantify the serious consequences of
high-dose radiation and eliminate it from
curative treatments for most children with
leukemia and lymphoma.
Back to
the top
 The Leukemia & Lymphoma
Society and Forma Therapeutics Enter
Collaboration to Bring New Therapies to Patients
Faster
The Leukemia & Lymphoma
Society (LLS) and Forma Therapeutics are
partnering to accelerate LLS's pipeline of
research projects entering late pre-clinical
development.
The collaboration will
begin with a selection of ten small molecule
candidates, discovered by LLS grant-funded
academic researchers, deemed to have the most
promise of advancing to clinical trial in the
shortest period of time. Forma will use its
proprietary Computational Solvent (CS) Mapping
technology to aid in structure based drug design
with expert computer modeling, screening and
medicinal chemistry competence to optimize and
prioritize molecules that LLS and its partners
may take to the clinic.
The
partnership between LLS and Forma is the latest
in LLS's Therapy Acceleration Program, which is
taking a results-oriented approach, partnering
directly with biotechnology companies to move
promising therapies more quickly along the FDA
drug approval critical path.
"With its
sophisticated technology suite and internal
expertise to expeditiously accelerate the
development of novel therapies, Forma is an
ideal partner to help LLS achieve its mission,"
said John Walter, LLS's chief executive
officer.
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the top
Janet Rowley, M.D., A
Researcher Funded by The Leukemia & Lymphoma
Society, Receives Presidential
 Medal of
Freedom
The Leukemia &
Lymphoma Society (LLS) congratulates Janet Davis
Rowley, M.D., of University of Chicago, a
pioneer in demonstrating that cancer is a
genetic disease, for being awarded the 2009
Presidential Medal of Freedom. President Barack
Obama awarded the Medals of Freedom, the
nation's highest civilian honor, to Rowley and
15 others at a ceremony Aug. 12,
2009.
Dr. Rowley was recognized for her
discoveries of recurring chromosomal
abnormalities in leukemias and lymphomas -
findings that have revolutionized how cancer is
understood and treated. Since 1984, LLS has
awarded Dr. Rowley's lab eight grants, including
the current Translational Research Program (TRP)
grant, effective through 2011. The current
funding is supporting her work developing a tool
to more precisely diagnose genetic subtypes of
acute myelogenous leukemia (AML) so that more
appropriate individualized treatment can be
applied to patients.
Dr. Rowley's
earlier work helped to establish that cancer is
a genetic disease, demonstrating that mutations
in critical genes lead to specific forms of
leukemia and lymphoma. Her discoveries helped
lay the groundwork for the development of
targeted and individualized therapy for patients
with cancer. In 1973, Dr. Rowley showed that the
Philadelphia Chromosome associated with chronic
myelogenous leukemia (CML) was an abnormal
translocation of two chromosomes. Her discovery
was a key step in the eventual discovery of
Gleevec, a targeted therapy for CML patients.
Rowley, 84, is the Blum-Riese
Distinguished Service Professor of Medicine,
Molecular Genetics and Cell Biology and Human
Genetics at the University of Chicago.
"Dr. Rowley's work during her exemplary
career has had a major impact on the treatment
and on the lives of patients with leukemia,"
said John Walter, LLS president and CEO. "LLS is
extremely proud of playing a role in supporting
a researcher of her caliber and we laud this
recognition of her significant
achievements."
First established in 1945,
the Medal recognizes "an especially meritorious
contribution to the security or national
interests of the United States, world peace,
cultural or other significant public or private
endeavors."
Back to the
top
 Q&A: Nicola J.
Camp, Ph.D.
Nicola J. Camp, Ph.D., Department of
Biomedical Informatics, University of Utah
School of Medicine. Dr. Camp, recipient of an
LLS Translational Research Program grant, is
studying the genetic dissection of myeloma.
What is
the biomedical problem/issue that you are trying
to resolve?
Myeloma is the second
most common blood cancer. By studying families,
we have learned that mutations in material
passed from parent to child are likely to be
part of myeloma, along with mutations that occur
as myeloma cases evolve. If the familial
mutations (genetic risk variants) could be
found, they could be used to help identify
people at high-risk for myeloma, choose best
treatments for individual patients and
eventually lead to more effective treatments
that target the abnormalities. There are two
major obstacles: First, there are many mutations
to find (not just one); Second, myeloma cases
are quite variable - for example, some patients
live long after diagnosis while others do not.
What's
novel or innovative about your approach?
In our study, we are using a genetic
technique called genomewide association (GWA) to
address the first obstacle. This involves a
systematic search of the entire human "genome"
(all genes) to look for myeloma risk variants
and is the current state-of-the-art for
uncovering common risk variants (occur in the
general population at rates of 5% or more) in
complex diseases like myeloma. Very simply, the
approach involves the comparison of genetic
material from individuals with myeloma to the
genetic material of individuals without the
disease to see which genetic variants appear
more often in myeloma cases, and therefore could
be involved in the disease process.
To
be successful, we must also be able to group
myeloma cases that share the same genetic
mutations. But since we don't know what the
mutations are yet, this is a chicken-and-egg
problem. To overcome this, we determine which
genes are active in each patient's myeloma
cells. This is called gene-expression (G-E)
profiling and can identify which genes have been
'turned up' and which genes have been 'turned
down' in the cancer cells relative to normal
cells. We assume that myeloma cases with similar
G-E profiles will also be similar in their
inherited genetic changes.
Our previous
work already showed that G-E profiles are the
best available predictors of good vs. poor
survival for myeloma patients. We will use the
G-E results in our GWA search to look for
genetic risk variants for myeloma and also
variants that may be involved in survival. We
are the first to use both types of genetic data
to search for myeloma risk variants.
How will
your work one day help patients?
Mutations that predict a high myeloma
risk have the potential to be helpful for early
detection and diagnosis. Genetic variants that
can differentiate between myeloma subgroups may
have value for risk stratification and treatment
management. Furthermore, knowledge of these
genetic variants may also lead to avenues for
new therapeutic targets. In particular, genetic
changes that recognize those patients likely to
have poor survival will be of specific interest,
as these will provide new avenues to explore for
more effective therapies that are desperately
needed for this high-risk patient
population.
Are you close to
clinical trials?
We hope to identify
genetic variants that will be useful for
developing novel therapeutics. Clinical trials
of such novel therapies will be a natural
outcome of this three year project.
What other projects
are you excited about and believe will benefit
patients?
The GWA used in this
project for multiple myeloma is useful for
identifying 'common' genetic risk variants that
usually produce very low risk alone, but
high-risk can occur if many such common risk
variants are present. Our research of familial
clustering of genetic variants suggests that
some of these may be common across multiple
types of hematological malignancies, in
particular, multiple myeloma, chronic
lymphocytic leukemia (CLL) and Non-Hodgkin
lymphoma. In Utah, we have access to a unique
and powerful database called the Utah Population
Database (UPDB), that contains 11 generations of
genealogy data and cancer diagnoses back to the
1960s. Using this resource, we have identified
high-risk, large, extended families with an
excess of CLL and will use these to search for
rare variants involved in CLL. We hope to pursue
this design for our myeloma studies too. Risk
variants identified in high risk families are
likely to have immediate clinical impact for
genetic counseling of family members and also
may provide opportunities for new therapeutic
targets and provide insight regarding the
relationship between different hematological
malignancies.
What are some of your
hobbies and non-research interests?
I
was brought up in Britain and inherited a keen
love of gardening from my parents. After a busy
week, I like nothing better than to be out in
the garden and later relax with my family in our
beautiful yard. I also am very fond of European
travel and European pastries -croissant,
Mmmmm!
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Ohio
Nurse Leads Successful Cancer Survivor Book
Club 
When Mike Uscio, the patient
services manager of the Central Ohio Chapter of
The Leukemia & Lymphoma Society (LLS),
needed somebody to lead a combination book
club/support group for cancer survivors,
Christine Krall, RN, BSN, OCN, of Ohio State
University, stepped up. Krall, who has been a
nurse at OSU's James Cancer Hospital for 13
years, already had a connection with LLS through
Team In Training (TNT), having signed up to
train for a marathon in Alaska in 2002.
Distraught after losing a patient she had been
close to she was seeking a way to honor his
battle. Krall stuck with TNT, eventually
becoming a walk coach. She even met her husband
through TNT while training for that first
marathon!
"I got much more out of the
experience than the 26.2 miles and $6,300 I put
in," recalls Krall. "I got blisters, friends
that I still keep in touch with, and a
husband!"
Today the Cancer
Survivor's Book Club led by Krall is the
chapter's most well attended support group,
averaging between 25-30 participants over the
past two years, with a 90% retention rate. Krall
even developed a poster presentation and
presented the information at the 34th Annual
Oncology Nursing Society Congress Conference in
San Antonio, TX, this past April. Her abstract,
entitled Interdisciplinary
Book Club: An Innovative Approach to Provide
Support to Cancer Survivors, was selected
from over 350 submissions by over 300 cancer
centers across the United States. It was about
the success of the book club but also about the
importance of partnering nursing and social work
together to better meet survivor
needs.
"Chris's dedication
has made the Book Club an absolute success,"
says Uscio. "Patient evaluations speak highly of
Chris's commitment, compassion and subject
knowledge. She truly has a pulse on what our
blood cancer survivors need."
She
describes the book club as a mix of cancer and
non-cancer related books, fiction and
nonfiction. "We have read survivor
biographies, humor books, and inspirational
books. I think the group works because it is so
eclectic, male and female of all ages and races.
They really look forward to seeing each other
monthly and discussing the
book."
Besides her participation
with the Book Club, Chris serves on Central
Ohio's patient services committee. She also
formed a Light The Night® Walk team for her
unit at the hospital.
In June Central Ohio Chapter Executive
Director Phil Tanner and Uscio honored Krall
with a Certificate of Appreciation, in
recognition of outstanding service in
support of patient
services.
Krall is one great
example of how to volunteer with LLS. Here
is more information about
volunteering
Find
a Support Group Near You
Start
your own club with these
books
The selection
of books and other resources provided in our
reading list includes entries on a wide range of
subjects. This list has been created for
patients and families impacted by blood cancers
and the helping professionals who work with
them.
Back to the top
September Is Leukemia, Lymphoma
and Myeloma Awareness Month
Remarkable
progress has been made in treating patients with
blood cancers. Sixty years ago there were few
effective treatments for children or adults with
blood cancer and the rate of survival was very
low. Today, nearly 90 percent of children with
acute leukemia and nearly 80 percent of children
and adults with Hodgkin lymphoma are cured.
Improved therapies and stem cell transplantation
have dramatically improved survival rates for
many blood cancers, and even patients with
diseases resistant to treatment, such as
myeloma, are benefiting from new drugs that are
increasing the rate and duration of remissions.
Yet, nearly 913,000 people in the United
States currently have some form of blood cancer.
Every ten minutes someone dies from a blood
cancer and more than 53,000 will die from one
this year.
The Leukemia & Lymphoma
Society (LLS) is a beacon of help and guidance
to those touched by blood cancer and each
September LLS observes Leukemia, Lymphoma and
Myeloma Awareness Month, to shed light on these
diseases and let the public know that there are
resources available for blood cancer patients
and their families.
"Awareness Month is
an opportunity to increase the public's
understanding of blood cancers and encourage
people to support the funding of research to
find cures and education programs to help
patients have the best possible outcomes
throughout their cancer experience," says Hildy
Dillon, LLS senior vice president of patient
services.
Through its patient services
programs, LLS offers a comprehensive array of
education and support services to blood cancer
patients and their families. There are family
support groups, patient education workshops
featuring health experts, and First Connection -
a peer-to-peer support program that matches
newly diagnosed patients with trained volunteer
survivors. A back to school program help
children treated for cancer transition back to
school. LLS also provides financial assistance
to patients with significant financial need and
an insurance co-pay assistance
program.
LLS's web site - www.LLS.org is the
definitive resource for information about blood
cancers and its Information Resource Center
(IRC) is a call center staffed by master's level
social workers, nurses and health educators who
provide information, support and resources to
patients and their families and caregivers. IRC
information specialists are available at (800)
955-4572, Monday through Friday, 9 a.m. to 6
p.m. ET.
More
information about where to turn for
help
Newly Diagnosed
People who have
recently received a diagnosis of a blood cancer
often have questions about the disease, the
prognosis and the treatments available. It is
important to learn about the disease, but also
to learn about insurance coverage, healthcare
facilities and how to obtain support. Specific
questions may also be answered by information
specialists at The Leukemia & Lymphoma
Society's Information Resource
Center. The center is
open every business day, 9 a.m. to 6 p.m. ET, at
(800) 955-4572.
Cancer Facts: Leukemia, Lymphoma,
Myeloma & Myelodysplastic Syndromes:
Populations at Risk (PS82)
Take Action: Make your voice
heard! Communicate with
legislators about issues
that affect blood cancer patients, family
members or caregivers; Represent blood cancer
patients among local healthcare coalitions; Help
bring media attention to impending
issues.
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the top
New
Online
Support Groups
The Leukemia & Lymphoma
Society's (LLS) free online support groups
offered in partnership with The Wellness
Community (TWC) are now open for registration.
Two LLS groups - "Lymphoma" and "All Blood
Cancers" are specifically for blood cancer
survivors. Additional online support groups for
cancer survivors, caregivers and a bereavement
group, offered by TWC are also open to blood
cancer patients and caregivers, offering options
for many days and times. These weekly groups are
password-protected and are facilitated by
trained professionals.
For additional
information and to register, visit www.LLS.org/onlinesupport.
Back to
the top
 New Co-Pay Assistance Program
Online Application for
Patients
The Leukemia
& Lymphoma Society Co-Pay Assistance program
is pleased to announce a new tool to help
patients submit online applications
quickly and easily. The Co-Pay Assistance
program provides financial assistance for health
insurance payments and blood cancer treatment
co-pay obligations to qualified patients. For
more information, visit www.LLS.org/copay or call (877) 557-2672.
Co-Pay
Assistance Program Broadens Funding
Qualified patients with chronic
myelogenous leukemia and myeloma can now receive
up to $5,000 in assistance from LLS' Co-Pay Assistance
Program. The aid helps offset
prescription drug co-pays and other
insurance-related expenses according to disease
diagnosis. For more information, www.LLS.org/copay or call (877) 557-2672.
Back to
the top
New Online Blood Cancer
Resource Directory 
The Leukemia
& Lymphoma Society (LLS) is proud to
announce the launch of a new Web tool that can
help identify resources for patients, caregivers
and healthcare professionals. The Blood Cancer Resource
Directory offers an
extensive collection of organizations that
provide a variety of programs and services. The
Directory is a user-friendly way to quickly
identify resources that can provide support,
financial assistance, disease information and so
much more. We are pleased to offer this
important tool to further assist patients,
caregivers and health care professionals who are
seeking resources surrounding blood cancers.
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Upcoming Telephone
Education Programs
CML: What Every Newly Diagnosed
Patient Needs to Know
Date: September
15, 2009
Time: 12 pm to
1 pm Eastern
This program will feature Jorge
Cortes, M.D., Professor of Medicine, Chief, CML
Section, Department of Leukemia, The University
of Texas, M.D. Anderson Cancer Center, Houston,
TX.
Emerging Therapies in NHL:
Understanding Your Options
Date:
September 22, 2009
Time: 12:00
p.m. to 1:30 p.m. Eastern
This program will
feature Andrew D. Zelenetz, M.D., Ph.D, Chief,
Lymphoma Service, Division of
Hematology/Oncology, Department of Medicine,
Memorial Sloan-Kettering Cancer Center, New
York, NY.
NEW
OPTION
You now have the option of
listening to the program from your computer
(webcast). When you register for the program,
you will be asked if you want to participate by
phone or via webcast. If you choose webcast, you
will be sent an e-mail providing you with a URL
link for you to click on the day of the
program.
To learn more about these
programs click here.
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New Spring Offerings for
TNT!
Team In Training (TNT) will be offering
some exciting new venues for its spring
season.
The inaugural Rock 'n' Roll Mardi
Gras Marathon and Half Marathon will take place
in New Orleans on Feb. 28, 2010, giving runners
and walkers an opportunity to enjoy the unique
culture, Creole cuisine and music of the "Big
Easy," while also having the satisfaction of
taking on the physical challenge and raising
critical funds for blood cancer research and
patient services. As with all events in the
"Rock 'n' Roll" series, live bands will perform
at every mile of the race.
TNT
participants can also chose to participate in
Disney's Princess Half Marathon Weekend on March
7, 2010. This half marathon will bring women of
all ages together to participate in a magical
event designed just for them. The Disney
princesses are the inspiration for the weekend's
events, with a focus on the attributes each
princess possesses: commitment, courage,
determination, fantasy, perseverance and
strength. The route will take participants from
the Epcot Center parking lot through the Magic
Kingdom Park, Tomorrowland and Cinderella
Castle. Disney's Fit for a Princess Expo, on
March 5-6, will be a two-day celebration of
women, focused on health and fitness, and
including celebrity runner appearances, seminars
on training, racing and nutrition.
And
who doesn't love Paris in springtime? Every year
in April, 35,000 runners fill the streets of
Paris in the annual Marathon de Paris. This
year's will take place on April 11, 2010.
Throughout the marathon runners get a good view
of the magnificent city and some of its famous
sites. The course begins in front of the Arch de
Triumph and continues down the broad Champs
Elysées. Other landmarks passed along the route
include the Eiffel Tower, Notre Dame Cathedral
and Place de la Bastille. Much of the course
runs along the banks of the Seine River.
To learn more visit www.teamintraining.org or call 1-800-482-TEAM.
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Washington,
D.C. Man Sails to Honor Nephew's Battle
with Leukemia
 The Leukemia Cup Regatta 2009 season is
still going strong, with Regattas taking place
across the country.
For the National Capital Area
(NCA) Chapter, Peter Howson, 41, is preparing to
sail in honor of his nephew, Andrew, a leukemia
survivor. Andrew was actually born with leukemia
and diagnosed at two months old. As an infant he
endured treatments including chemotherapy and a
bone marrow transplant. Now, thanks to research,
Andrew, 8-years-old, is in remission.
To
celebrate Andrew's 5th year in remission in
2006, Howson sailed in The Leukemia Cup Regatta
in Alexandria, VA, and raised $11,000 to support
The Leukemia & Lymphoma Society's (LLS)
blood cancer research and patient services
initiatives. Peter has now met that goal three
years in a row, having raised more than $33,000
to help find cures.
"Sailing in The Leukemia Cup
Regatta is the highlight of my sailing season,"
says Howson. "It's always great to see the
community come together to support something
that's so close to my heart. Having Andrew
participate as an honorary skipper is always fun
since it means I get to have my brother sail
with me. Over the years this has become a family
affair with Andrew's grandparents, uncles, aunts
and cousins, etc. being a part of the event.
It's always a sobering reminder to look back on
the days when Andrew was sick, but being able to
do something that helps those who are living
through the experience now is a great
counterpoint to the memory of those dark
days."
Loree Lipstein, Regatta campaign
manager for the NCA chapter, anticipates about
150 boats at The Leukemia Cup Regatta on
September 12, 2009 at the Washington Sailing
Marina in Alexandria. NCA with a goal of raising
approximately $170,000.
Regatta season
continues around the country through late
October. Top fundraisers get the opportunity to
participate in the Fantasy Sail with The
Leukemia Cup Regatta National Chairman and
sailing great Gary Jobson. The Fantasy Sail is
taking place this year in San Francisco October
16-18.
For more information about The
Leukemia Cup Regatta 2009 series, please call
888.HELP.LLS or visit www.leukemiacup.org.
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top
 Students Join the Fight Against Blood
Cancer
Thanks to
research, nearly 90% of children with acute
leukemia are now cured. But there still is a
long way to go. Leukemia affects more children
than any other cancer, so The Leukemia &
Lymphoma Society's School & YouthSM Programs provide a
meaningful way for kids to help
kids.
Each spring thousands of students
across the country learn about the value of
community service while raising money to help
find cures for leukemia, lymphoma and myeloma.
Top fundraising classrooms may win pizza parties
and other prizes.
During the 2008-09
school year, students across the country raised
approximately $19 million by collecting spare
change to help fund cancer research and provide
services to patients and their
families.
"It's inspiring to see young
people volunteer and really care about helping
others," said Kristy Lysik, national director of
S&Y. "It's a program that is truly
meaningful because kids learn that their efforts
really make a difference."
School &
Youth Programs include:
Pennies
for Patients®: Value-building
program for elementary and secondary
schools. Students collect funds, starting
with their own spare change, used to support the
research and patient services programs of LLS.
The program takes place during a three week
period in February or March.
Olive
Garden's Pasta for Pennies: Similar to
Pennies for
Patients, this program is sponsored by
Olive Garden Restaurant. Students collect
spare change, and the class raising the most
money in each school receives a pasta party
courtesy of Olive Garden. Olive Garden also
hosts kickoff luncheons for representatives of
participating schools in each city and provides
marketing support and materials for the
program.
HOP
for Leukemia & LymphomaSM: Pre-schoolers
and early elementary school students raise money
based on the number of hops they are able to
execute in a given time period. Available in a
limited number of markets.
The
Trish Greene Back to School Program for Children
with Cancer helps children return to
school and other activities once their
treatments are over.
For more information
on the School & Youth Programs, or to learn
how to register your school,
visit
www.schoolandyouth.org
.
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Comprehensive Cancer
Care Needed Now
As Congress prepares to return to
Washington from their August recess, the debate
on health care reform in America has taken
center stage. And regardless of your personal
views on the proper way to fix a broken system,
one absolute truth remains: for cancer patients,
there simply is not an adequate "system of
care."
With more than 12 million
Americans living with cancer - including an
estimated 912,938 people currently battling
leukemia, lymphoma and myeloma - patients need a
comprehensive care plan that spans the entire
course of their treatment, including
survivorship. Cancer care begins with diagnosis
and continues past remission. Care plans need to
constantly evolve with each stage of treatment,
and must be tailored to each individual patient;
yet cancer patients rarely receive any kind of
written or electronic plan for their cancer
care.
To that end, the Comprehensive
Cancer Care Improvement Act (CCCIA) has been
introduced in Congress and seeks to coordinate
active treatment and ensure a smooth transition
from that treatment to survivorship care and
follow-up by establishing a new Medicare service
for cancer care planning. It would also
authorize model programs for delivery of
coordinated cancer care, including initiatives
targeting the medically
underserved.
Despite advances in cancer
care and detection, flaws in the system of
cancer care persist and have left many survivors
unsure about how to cope with short-term and
long-term effects of cancer treatment. The CCCIA
addresses these gaps and is consistent with
recommendations of the Institute of Medicine
regarding initiatives to enhance cancer care
quality.
The best news is that as a blood
cancer patient advocate, you can help address
these needs. Please visit The Leukemia &
Lymphoma Society's Legislative Action Center and
send
a letter to your representative urging their support of the
Comprehensive Cancer Care Improvement Act.
Don't just wait for Congress to decide how best
to reform the health care system. Take a moment
and help improve health care for cancer patients
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