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Lifelines
of the NATIONAL ASSOCIATION OF CANCER PATIENTS
Vol. III, No. 1 û October 1998
Sidney Kimmel Cancer Center site of October 15 event
Health care consumer issues to be subject of free Town Hall Meeting
What are multi-disciplinary second opinions? Who needs them and how do they work.
What are the potential roadblocks to accessing the latest cancer treatments and new technologies and drugs. Who
decides?
How are research dollars allocated? Do funding decisions drive research, or vice versa?
What's going on in the political arena that will affect cancer patients?
These are just some of the consumer issues that will be discussed at a free Town Hall Meeting on Access to Quality
Cancer Care scheduled for October 15 at the Sidney Kimmel Cancer Center.
Sponsored by a consortium of patient support groups and others sharing interests in these issues, including the
National Association of Cancer Patients, the meeting is scheduled to begin at 6:30 p.m. and continue until 9:30
p. m. Early birds will be treated to a guided tour of the Cancer Center and a light supper beginning at 5:30 p.m.
Sandra Maas, health reporter for KFMB-TV, will moderate the program. Expert panelists will discuss the topics mentioned
above and much more, with plenty of time for questions and answers and one-on-one conversations throughout the
evening. The meeting is designed to help cancer patients make informed decisions about their health care. The meeting
brochure, which gives additional details about the speakers and the program is now available at most health care
centers in the San Diego area, or you can call (760) 598-7303 to obtain a copy.
Admission is free, but pre-registration is requested to help meeting organizers plan accommodations and refreshments.
Please mail or fax the registration form found on page 3 to the conference coordinator.
David Tarin welcomed to Scientific Advisory Board by John Mendelson
NACP's Scientific Advisory Board (SAB) gained another prestigious member when David Tarin, M.D., Ph.D., Director
of the University of California, San Diego Cancer Center was welcomed by SAB Chairman John Mendelson, M.D. Dr.
Mendelson is President of the
M.C. Anderson Cancer Center in Houston.
Dr. Tarin joins Sidney Salmon, M.D., William Hryniuk, M.D., Richard Anderson, M.D., and Ivor Royston, M.D. on
the Advisory Board. These distinguished scientists review the positions taken by NACP to make sure they are based
on sound scientific principles.
Lifelines is published by the National Association of Cancer Patients. Editor: Nicki
Hobson. (760) 598-8289
Survivorship conference projects messages of hope, information to help cancer patients
Richard and Annette Bloch were the keynote speakers at Cancer Survivorship: San Diego!, an educational symposium
held on May 2 for cancer patients, their families and health care providers. Attended by more than 300 people,
the symposium featured more than 30 speakers and panelists, and included a well-received breakout session conducted
entirely in Spanish.
The conference was sponsored by 22 San Diego-area cancer organizations, including NACP, and underwritten by a grant
from Amgen, Inc. It drew rave reviews in evaluations completed by those attending.
The Blochs told of their experiences when he was diagnosed with lung cancer nearly twenty years ago and told he
had only three months to live. Refusing to accept that prognosis, Bloch sought out treatment at a major comprehensive
cancer center and was cured. He is a co-founder of H & R Block, Inc., but has devoted most of his time since
his victory over cancer to helping other cancer patients.
The purpose of the conference was to connect individual cancer patients with sources of information and patient
support organizations, and to empower them to be an active participant in decisions about their own health care.
Prayer flag ceremony highlights NACP's support for Ward Valley
NACP has applied for and received a land use permit from the U.S Bureau of Land Management to erect flags on the
Mojave Desert site selected for a low-level radioactive waste disposal facility. The flags are intended to call
attention to the important role radioisotopes play in the diagnosis and treatment of cancer, and in the search
for a cure for all types of cancer.
The initial flag-raising ceremony was held at the Ward Valley site, located a mile south of Interstate 40 (Water
Road exit) 22 miles west of Needles, CA, on September 26. The ceremony represented a modern adaptation of an ancient
Tibetan tradition in which bright, colorful prayer flags are flown from rooftops and trees so that the winds can
pick up the prayers and carry them directly to Buddha. The ceremony symbolizes NACP's support for the disposal
project. Ward Valley has been licensed by the California Department of Health Services to dispose of low-level
radioactive waste that is a necessary byproduct of the use of radioisotopes in medicine and research. Construction
has been delayed because the federal government has refused to transfer title to the land to California.
"Project opponents have been very vocal in expressing their objections to the site, so we thought it was time
for supporters of this essential facility to speak out," said NACP president Daniel Negroni, a cancer survivor.
From The President
One of the most important things NACP members and the board of directors accomplished over the past year was
the establishment of The NACP Foundation. Why do we need both NACP and a Foundation?
It all goes back to the fact that when the National Association of Cancer Patients was founded in the early 1990's,
its purpose was to mount a grassroots political advocacy campaign on issues affecting cancer patients. There was
a recognition that many decisions that affect patient care are made in the political arena where science frequently
takes a back seat, and where patients had little if any input.
So it seemed important to establish a patients' advocacy group to be a part of this political process, to make
sure that the voices of patients and their families are heard. Our positions are always reviewed by our scientific
advisory committee to make sure that we never stray from good science.
Now, brace yourself for the legalese: In order to comply with laws governing our political activities, NACP was
organized under Section 501 ( c ) 4 of the Internal Revenue Service Code. This designation means that while the
organization is non-profit and tax-exempt, contributions made to NACP are not tax-deductible for the donor. 501
( c) 4 organizations can lobby, make political contributions and conduct a wide range of political activities without
penalty.
However, the board of directors soon recognized that it is equally important for a science-based organization to
conduct educational programs and provide accurate information about cancer to the public.
The board subsequently decided that carrying out these educational programs could be done most appropriately by
a separate educational foundation. Based on that rationale, The NACP Foundation was incorporated in 1997 and received
certification under Section 501 ( c ) 3 of the Internal Revenue Service Code this year. Just like a 501( c ) 4
organization, a 501 ( c ) 3 organization is also non-profit and tax-exempt. The major differences, however, are
that contributions to the Foundation are tax-deductible to the contributor, and only very limited political activities
may be undertaken by the Foundation.
The important practical impact is that having 501 ( c ) 3 status makes The NACP Foundation eligible for financial
grants to carry on its educational programs that would not otherwise be available.
In a nutshell, the two NACP organizations are complementary: The National Association of Cancer Patients is focused
on active participants in the political arena to make sure that important decisions affecting cancer patients are
based on sound science, not political considerations.
The NACP Foundation, on the other hand, is dedicated to educational activities that inform and empower cancer patients
and their families to be full participants in health care decisions affecting them.
I believe this is a good balance, and will result in the broadest range of benefits for cancer patients. After
all, that's what we are all about.
-Dan Negroni, President
Join NACP, get involved
The membership of the National Association of Cancer Patients is made up primarily of cancer patients, the families
and friends of cancer patients, and physicians involved in the daily care of cancer patients or in cancer research.
It is open to anyone sharing the goals of NACP.
The more people willing to get involved, the more influence we will have in shaping political outcomes that affect
cancer patients. If you are willing to help out, especially when a policy decision is being made, we need you!
Please consider becoming a member of NACP. Call (760) 598-8289 for information and a membership application.
Lobbying for Cancer Research
by James Berkovec, Ph.D., NACP Legislative Chair
Someday a cure for cancer will be found. Just how quickly it happens will depend on how aggressively and effectively
we work to reach this goal. In recent years, the cancer research community has been finding improved therapies
and treatments regularly. For some types of cancer, just a few, the improved therapy comes very close to being
a cure. As a result, some people who ten years ago were doomed to die of cancer can now be saved and return to
a normal life.
Although these developments are enormously important in improving the lives of today's cancer patients and those
not yet afflicted or diagnosed, they are unlikely to provide the basis for a cure for cancer.
But there is hope on another front: Medical biologists have been busy developing basic knowledge about the biology
of cells and cancer. Many of their discoveries have the potential for being the basis for a cancer cure, or leading
to knowledge that will be the basis for a cancer cure-but putting this basic information to work in medical procedures
and therapies takes a lot of time, a lot of effort, and a lot of money.
While this emerging information puts us on the verge of finding a cure, we still need to aggressively pursue the
goal of a cure. There is a lot of basic biological knowledge to be exploited and we need to devote enough research
funds to get a cure for cancer at t he earliest possible point in time.
We also need to be sure that effective research tools remain available to researchers. The use of animals and radioisotopes,
for example, has been and will continue to be very important in cancer research. We can't allow those tools to
be taken away from researchers by irrational societal constraints on their use.
That's where the National Association of Cancer Patients, its members and all cancer advocacy organizations come
in. That's where lobbying comes in. That's where The March in Washington and across the country on September 26
comes in. We need to be sure that our government officials all recognize that there is an historic opportunity
in front of us that we can exploit by increasing the funding for cancer research now, and that we expect them to
double the cancer research budget over the next 5 years.
The March
NACP actively supported THE MARCH: Coming Together to Conquer Cancer which culminated on September 26 with hundreds
of thousands of cancer patients and their families from across the nation gathered on the Mall in Washington, D.C.
The March is a grassroots campaign to educate the American people about cancer and the devastating impact it has
on individuals, families and on society. Chaired by General Normal Schwarzkopf (U.S. Army, ret), the national event
focused on development of responsible public policies on cancer.
Several NACP members participated in the Washington event, including founding director Bill Otterson. NACP member
(and founder of The Thrivers' Network) Dani Grady did more than her part to call attention to the need to devote
more resources to the battle against cancer: She spent 70 days traversing the national on a bicycle, holding news
conferences and town meetings along the way to stir up support.
Individuals and organizations unable to participate in the Washington MARCH organized local events on September
26, linking them to the national effort. Hundreds of local events took place, including NACP's prayer flag ceremony
at Ward Valley.
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