Mr. Speaker, I want to bring to my colleagues' attention an October 10, 2006 article in the Wall Street Journal by Amy Dockser Marcus, entitled ``Advocacy Overload?'' The article reviews the current state of disease-funding advocacy, and…
Mr. Speaker, I want to bring to my colleagues' attention an October 10, 2006 article in the Wall Street Journal by Amy Dockser Marcus, entitled ``Advocacy Overload?'' The article reviews the current state of disease-funding advocacy, and specifically cites the efforts of the Princeton-based Melanoma Research Foundation to coordinate the advocacy activities of a wide variety of melanoma organizations. In the past year, MRF has worked to organize a coalition of these groups in order to develop a coordinated message to Congress and the National Institutes of Health. The goal of this ``One Voice'' for melanoma research is to develop a common agenda, focused on securing the additional resources to fund the research into better treatments and cures for melanoma.
The Melanoma Research Foundation (MRF) was founded 10 years ago and has become the leading research foundation for melanoma. The Foundation has worked closely with the research and medical communities encourage dialogue and education about melanoma through their research congresses; participated in National Cancer Institute initiatives; organized the first steps of a melanoma coalition for advocacy; and hosts an interactive website for patients and caregivers. Their three part mission--supporting basic and translational research, education of patients and caregivers, and advocating for the melanoma community--is funded primarily through community fundraisers across the United States organized and managed by MRF volunteers. Other primary sources include memorial donations, individual gifts, and unrestricted grants from pharmaceuticals.
The need for a coordinated attack on melanoma is more critical now than ever before. Here are some of the facts about melanoma: It's the fastest growing cancer currently in the U.S.; It's the most common cancer in young adults aged 20 to 30; For women, age 25 to 30, melanoma is the primary cause of cancer death; For women, age 30 to 35, it's the second leading cause of cancer death, after breast cancer.
One of the primary causes of melanoma is UV exposure, most of which comes from too much time in the sun. Melanoma is survivable, if diagnosed early. When a superficial melanoma is found and diagnosed early, the 5 year survival rate is 100 percent. But at the opposite end, when the melanoma advanced to what's called Stage IV, when it's disseminated to major organs, the 5 year survival rate drops as low as 7 percent. Yet, despite these figures and the growing incidence of melanoma, no significant advances in medical therapies (or survival) for patients with advanced melanoma has occurred in the past 30 years.
Clearly, there's a great need for public awareness of the dangers of overexposure to the sun. There's also a need for increased research in identifying the causes and potential cures for melanoma. Once again, I commend the good work of the Melanoma Research Foundation in bringing greater public awareness to this disease, and advocating for more
public and private sector funding for melanoma research.
[From the Wall Street Journal, Oct. 10, 2006]
Advocacy Overload?
Activists Seek to Unify Efforts Of Groups Targeting Diseases; A Brain-
Tumor Collaborative
(By Amy Dockser Marcus)
At the national Brain Tumor Foundation, executive director
Rob Tufel has a standard reply for well-meaning families and
patients who want to set up a patient-advocacy group:
``Please don't start another organization.''
There are 141 patient-advocacy groups that cover brain
tumors, according to Mr. Tufel, while 43,000 people in the
U.S. are diagnosed every year with primary brain tumors,
benign or malignant. That's roughly one group for every 305
new patients. ``It just doesn't make sense from the point of
view of funding, or from the point of view of patients and
families,'' who must sort through the numerous organizations
and Web sites for information, Mr. Tufel says. ``Competition
is good because it keeps us on our toes, but at some point .
. . it becomes ineffective.''
Competition is an issue that many patient-advocacy groups
wrestle with as they struggle to raise funds for research,
attract greater interest in their diseases, and speed up the
search for a cure. Increasingly, advocates are asking: When
it comes to a disease like cancer, is it possible to set a
common agenda and speak with a unified voice?
Now some groups have begun to debate whether the large
number of organizations may be hindering as much as helping
in their efforts. Many diseases--including AIDS, autism and
Parkinson's disease--have more than one group that lobbies
Congress for more funding and reaches out to patients and
families. With cancer, in particular, there has been an
explosion in the number of foundations and advocacy groups in
recent years, as the Internet allows patients to connect with
one another more easily. It's particularly true in rarer
cancers such as brain tumors or melanoma, where the ratio of
the number of groups to the number of people who actually get
the disease is especially high. There are an estimated 40
groups in the U.S. for melanoma--a disease that will see
about 62,190 new cases and 7,910 deaths in 2006, according to
the American Cancer Society.
Many of these groups wind up competing with each other for
the same donors and the same researchers to sit on their
boards. There is the chance that groups will duplicate one
another's efforts, wasting resources by offering the same
programming or services. And busy legislators find themselves
uncertain about what the greatest need is for patients
because each group emphasizes different issues or aspects of
the disease.
There is also recognition that as cancer research
increasingly focuses on using costly, cutting-edge technology
to identify genes and cellular changes as an avenue to
new treatments, progress is going to take huge sums of
money that small patient-advocacy groups are unlikely to
be able to raise on their own.
Advocacy groups need to ask, ``Couldn't we better leverage
some of these resources that you're all spending?'' says
Paula Kim, whose Translating Research Across Communities
consulting group in Green Cove Springs, Fla., and Fallbrook,
Calif., works with patient advocates. Many times, groups end
up ``recreating the wheel'' in doing very similar work, she
says.
Different strategies are being tried in order to organize
the patient-advocacy community. Some advocacy groups for
major cancers, such as breast cancer and prostate cancer,
have formed coalitions that have been effective in lobbying
on common issues. Others end up merging; two separate
lymphoma patient-advocacy groups decided to join forces and
create one organization instead, the Lymphoma Research
Foundation. ``One Voice Against Cancer'' is a coalition of
many public health groups that lobbies Congress for more
federal funding for cancer research. Eight brain-tumor
foundations, including Mr. Tufel's group in San Francisco,
formed the Brain Tumor Funders' Collaborative to pool money
to fund large projects. Earlier this year, they announced
their first joint funding initiative, giving grants of $2
million to each of three scientific projects.
Not all smaller groups see the proliferation of foundations
as a problem that needs fixing. Many advocates started their
work because they lost someone to the disease, and want to
focus on highly personal goals or local projects. Small
groups also sometimes worry about having to divert too much
of their meager funds to big projects. ``I don't agree with
the idea that there are too many melanoma groups,'' says
Colette Coyne, who founded the Colette Coyne Melanoma
Awareness Campaign in New York with her husband, Patrick,
after their daughter died of melanoma. ``Many work in their
community. I think it is a healing thing for people to create
a foundation when they have lost someone.''
The Coynes concentrate their efforts in New York, where
they live. They have helped promote shade coverings in
playgrounds and helped push through tough legislation
regarding the use of tanning salons by minors. But they rely
mainly on volunteers and raise around $50,000 through a
yearly walk and dinner dance. ``I'd be concerned about being
committed to large amounts of money for a coalition when
we're never very sure what our income will be,'' says Ms.
Coyne. Nonetheless, Ms. Coyne says she believes a coalition
is necessary, and she wants to find a way for her group to
join.
It is within the melanoma community that one of the most
interesting and important debates is going on regarding
advocacy groups, amid growing attention to the disease.
Steven A. Rosenberg recently announced that he and other
National Cancer Institute scientists genetically engineered
advanced melanoma patients' own white cells to recognize and
attack their cancer cells. In a report published about 15 of
the patients, two of the patients saw their disease regress.
Translational Genomics Research Institute in Phoenix and the
H. Lee Moffitt Cancer Center and Research Institute in Tampa,
Fla., are working together to create a kind of map of the
human melanoma genome for researchers. These are the kinds of
projects that a coalition of melanoma advocacy groups could
help by lobbying for more federal funding and generating
greater public awareness about the projects and the need
for support.
Nineteen different melanoma groups came together in
Bethesda, Md., in late March for a meeting planned by the
Melanoma Research Foundation in order to debate whether they
should form a ``One Voice Melanoma'' coalition to increase
the impact of the community on a federal level. At the
melanoma coalition meeting, one of the key speakers was
Connie Mack, who was the U.S. senator from Florida from 1989-
2001, and is a melanoma survivor. Sen. Mack, who now serves
as chairman of the board of the Moffitt center, told the
patient representatives that their organizations could do
much more, especially on Capitol Hill, if they joined
together. ``Our challenge is to see that our voice is
heard,'' he told the advocates, ``but the only way that this
will occur is if we speak with one voice.''
In an interview later, Sen. Mack said that the individual
organizations were all doing important work, but that members
of Congress and officials at the NCI were constantly meeting
with patient advocates, including melanoma groups with
different ideas and requests. Congress has limited resources
available to give these groups, says Sen. Mack, and without a
common agenda, ``funding levels haven't achieved the level
where they can accomplish anything of significance.''
Linda Pilkington, a melanoma survivor who is executive
director of the Melanoma Research Foundation in Princeton,
N.J., says that the coalition talks had already made a
difference. In the wake of the meeting, the groups agreed on
some common goals. While discussion about the coalition's
structure and mission continue, as a result of the group's
discussion, the Melanoma Research Foundation was able to work
with a lobbyist and Ms. Kim to craft language that was
included in the current Senate Labor, Health and Human
Services, and Education appropriations report for fiscal
2007. It calls on the National Cancer Institute to convene a
group of patients and researchers to develop a five-year
strategic plan for melanoma research, including focusing on
the issue of how to speed up the development of new
therapies.
The effort hasn't been easy. ``Putting groups together is
like having your children work together,'' says Valerie
Guild, president of the Charlie Guild Melanoma Foundation in
Richmond, Calf., and part of the steering committee working
on the melanoma coalition. It seems to make sense because
they're all siblings, ``but try to get someone to decide what
movie to go to on a Sunday night.'' Despite the challenges, a
coalition can work, says Ms. Guild, who started her group in
2004 after her daughter died of melanoma. ``Everybody really
wants to get to the same place at the end of it all--a
treatment for the disease.''
Ms. Kim, the consultant, who is helping the melanoma groups
create a coalition, says there are a number of models that
can help small or financially strapped organizations
contribute to a coalition. Among them: sliding-scale dues
based on the size of a group's budget, or a program for
helping coalition members raise additional funds. Ms. Kim--
who herself co-founded an advocacy group called the
Pancreatic Cancer Action Network in 1999 after her father
died of pancreatic cancer--argues that ``for rare diseases,
coalitions are vital. It's a lot harder to make noise when
there are not a lot of people to advocate for you. It's
harder to get people on the bandwagon.''