The State of Sarcoma Advocacy

by

Deborah Buks

Public Relations Consultant

Houston, Texas

[Editor's Note: Deborah was diagnosed with an unidentified Sarcoma in April 2002 and has shown No Evidence of Disease since end of treatment in summer 2003. In addition to daily violin practice with her three- and five-year-old sons and running her business, she serves on the boards of directors of Sarcoma Foundation of America and SARC—the Sarcoma Alliance for Research through Collaboration.]

I was stunned when I learned the Sarcoma advocacy groups are, for all practical purposes, start-ups. They are all non-profit organizations founded within this decade and the most recent few years. When I was diagnosed, I was naïve. I just assumed there was a Sarcoma Society or similar organization that had been working on this issue for years.  I found no well-established organizations, like a Leukemia Society or American Heart Association, but I have gained the strong sense that the momentum in the Sarcoma community is accelerating as these relatively young groups define themselves and are beginning to reach both professional and patient communities.  Yet the lack of an organized, coordinated effort may delay our effectiveness.

So what is the state of Sarcoma advocacy in the U.S., and what are we advocating?

Two primary objectives consistently emerge among the many groups I found: 1) to fund research, relevant to both cause and cure, and 2) to educate and support the public—including patients, caregivers and the medical community.

And, who is active?

As is the case in any emerging industry, the field is quite fragmented.  At least half a dozen non-profit organizations have established themselves, mostly with complementary missions, though a great deal of redundancy exists: 

	Sarcoma Alliance. Formed in 1999 with a mission to bring information to patients and healthcare professionals, raises money for research through conferences and the web, and is perhaps best known for its Hand in Hand program which provides grants to patients seeking second medical opinions from Sarcoma centers.
	Sarcoma Foundation of America (SFA). Established in 2001, focuses its advocacy efforts on funding medical research through events, corporate sponsorships and individual efforts, as well as organizing lobbying efforts directed at obtaining equitable funding by NCI. Currently, NCI allocates only $5.7 million to Sarcoma, out of a total budget of $57 billion. The organization also has an active program to attract clinical investigators to Sarcoma research.
	Sarcoma Alliance for Research through Collaboration (SARC). SARC was newly created in 2004 by a handful of Sarcoma specialists to act as an advocate for sarcoma medical research and as an advocate for the conduct of clinical trials relating to possible treatments for sarcoma. It facilitates dialogue and collaboration among sarcoma researchers and clinicians, assists in the development and dissemination of protocols for clinical trials and information relating to sarcoma research and the results of clinical trials, administers research grants and funding for clinical trials, and acts as a primary resource for those treating sarcoma. SARC does not conduct clinical trials, though it intends to build a central web-accessible database of all Sarcoma clinical trials so physicians and patients have timely information in one place.
	Amschwand Sarcoma Cancer Foundation (ASCF). Formed in 2001, raises money for research and provides patient education and information. The organization created Shared Families, a network of homes in the Houston area where Sarcoma patients may stay when they come to M.D. Anderson, and has been instrumental in funding a new physician in the hospital’s Sarcoma clinic.
	Kristen Ann Carr Fund Sarcoma Forum. Has been very active and effective since 1993, having built a consistent series of events and an interested constituency that largely provides funding for efforts specific to Memorial Sloan Kettering, including a social worker, physician, teen/young adult center and numerous educational events, to name a few.
	The Liddy Shriver Sarcoma Initiative. Established late 2003, seeks to improve the quality of life for people with sarcoma by increasing awareness of sarcoma and the lack of young adults in cancer-based clinical trials and publishing the Electronic Sarcoma Update Newsletter (ESUN). The non-profit helps fund research by supporting organizations such as the Sarcoma Foundation of America and others that provide programs to directly support and help sarcoma patients.
	Northwest Sarcoma Foundation. Founded in 1996, is a non-profit organization committed to providing education and support to patients and families in the Pacific Northwest who are living with this cancer.  Its advocacy statement includes the promotion of accurate diagnosis, research and treatment options.
	Cure Our Children Foundation: Formed in 1998, hosts a remarkable library of links to resources on its webpage. This central repository of information assists parents, families and caregivers of children who have cancer and other life-threatening diseases. With a particular emphasis on Ewing's Sarcoma, the site covers a child's disease, current, new and developing treatments, and holistic and complementary treatment options, as well as directs readers to doctors, hospitals, pharmaceutical manufacturers and experts specializing in particular disease treatment.
	The Brian Morden Foundation. Formed in 2003 with goals to fund research toward a cure and better treatment, improve quality of life for patients at Children’s Hospital in Pittsburgh and fund college scholarships. The Brian Morden Foundation and the Liddy Shriver Sarcoma Initiative have recently joined forces to fund research on a vaccine being developed by University of Michigan Health System to treat recurrent/relapsed Ewing's Sarcoma.

Many of the organizations offer online support, chats, member lists and profiles. The Association of Cancer Online Resources (ACOR) hosts many cancer support groups and other lists related to treatment. There are seven lists for various types of Sarcomas with several thousand members. Discussions lead to help for treatments and many other areas of support.  These lists also encourage efforts for research funding and suggest those who can get involved in support of advocacy work.  Additionally, a multitude of Yahoo group lists exist for individual Sarcomas. 

Myriad events to raise funds for individuals to fund their treatment often produce heightened awareness as do the many local and regional fundraisers created by families and friends of Sarcoma patients, which run the gamut from sales of homemade jewelry and golf events, to trans-American cycling tours and hugfests. One of the better-known events, though created just a few years ago, is the Rein in Sarcoma fundraiser for Sarcoma research at University of Minnesota.  Additionally, many individuals have established funds in their physicians’ names at the Sarcoma centers where they’ve been treated, owing to the fact that contributions to those institutions earmarked by donors for Sarcoma departments never find their way past the hospitals’ general funds.

What are the current efforts of the medical community?

In addition to the appearance of Sarcoma experts at patient education conferences and in patient literature, in 2004 Dr. Karen Antman, of National Cancer Institute and then-president of American Association of Cancer Research, gave her keynote address on Sarcoma to the 20,000 investigators present in an effort to introduce them to the career opportunities associated with this wide-open field, and to attract their ideas for research applications. Sarcoma Foundation of America, which awarded four research grants in 2004, reported recently that it just received 21 applications from researchers newly interested in Sarcoma, almost double the number received the prior year.

Perhaps most notable, the National Cancer Institute in January 2004 published “A Roadmap for Sarcoma Research,” the report of the newly created Sarcoma Progress Review Group (PRG). This is perhaps the most significant milestone ever in the search for a Sarcoma cure.  Until 2000 when Sarcoma Foundation of America pressed for NCI to create a PRG for Sarcoma—the place where funding decisions are made within NCI—progress on the eradication of this disease had no forum for review. If the NCI weren’t even aware of Sarcoma issues, such as the lack of standardized treatment protocols, and the unique issues associated with childhood clinical trials, there was no possibility that Sarcoma funding would ever come up as a budget discussion,  nor any possibility that these issues would be addressed within the medical community at large. 

[Editor's Note: Excerpts from and a pointer to the complete Roadmap report are found in the April 2004 issue of ESUN.]

The 2004 report summarizes the expert guidance outlined by Sarcoma specialists, and sets priorities for improved delivery of care and research.  Lobbying for funding to implement the plan must follow in short order, as the appropriations decision will occur within the next few months. To that end, Sarcoma Foundation of America currently has a letter-writing campaign to members of the Congressional Appropriations Committee (templates and contacts available on their website, which will be followed by a telephone campaign to encourage Appropriations Committee members to respond to their constituents’ pleas for funding support as budgets are allocated in the next few months.

The Connective Tissue Oncology Society, formed in 1995, is an international group comprising physicians and scientists with a primary interest in the tumors of connective tissues. The goal of the society is to advance the care of patients with connective tissue tumors and to increase knowledge of all aspects of the biology of these tumors, including basic and clinical research. Included in the information sharing at the 2004 conference were presentations by Sarcoma Alliance, Sarcoma Foundation of America and Life Raft Group, whose advocacy efforts seemed to be genuine news to the medical professionals gathered there.

Now, what must happen next?

Clearly, a spirit of possibility is moving through our unique community and giving rise to our voices. Yet we are at a juncture I believe, where we must mature into a cohesive, directed singular voice. That is not to say that multiple organizations with distinct and complementary missions should not remain, but the strong must survive while the smaller, emerging organizations will produce far greater result by funneling their energies and funds into established organizations—rather than reinventing 501(c)(3) applications, legal and accounting fees, websites, phone lines, PO boxes, paid staffers, etc. If those of us with an interest in Sarcoma continue to propagate more organizations, we risk overwhelming those who most need our guidance and effort. Too many sites, too many coffers, too much un-verified information causes people to simply “turn off” rather than muster the energy to work through this maze.  Given the great need for information and funding, we must create a forum for collaboration and organize our limited resources for the most impact.

Unlike other interest groups whose numbers are greater, we must be prepared that we may have only ourselves to produce our results. Our small numbers (50,000 a year living with Sarcoma either showing No Evidence of Disease or in treatment) make us a minor consideration for corporate or foundation giving, a fact that will always affect our advocacy strategies. To reach our goals, we cannot afford the luxury of duplicated efforts, or anything less than a concerted professional effort. We will have to raise our money from those who know and care about us, speak to our own elected leaders, and approach the media ourselves. 

We must all do our best to be involved at some level, even if it is just to be present as registered members of these advocacy organizations. Otherwise, funding sources look on our websites and see our own constituents are not interested enough to even register, much less work for the cause, and there are far too many deserving organizations with active participation to warrant their goodwill dollars. Privacy laws and our geographic spread present significant barriers to our ability to identify each other and organize our effort, so we must voluntarily show ourselves, and encourage all those in our waiting rooms to do the same.

We must each take some small piece of the whole, and own it as our own responsibility in the matter. A brave heart and a determined mind will advance us further than professional know-how or higher education degrees.  We each have something meaningful to contribute.

We must educate our families, friends and business associates how to direct funds to Sarcoma-specific organizations that are demonstrating success. This year I will give the opening remarks as a survivor for the local American Cancer Society Relay for Life (an easily duplicated gig to create awareness, by the way), and yet, it will pain me to know that none of the thousands of dollars raised there will benefit one of our own.

We must partner with each other to gain efficiencies, following the good example of the Liddy Shriver Sarcoma Initiative’s efforts to support Sarcoma Foundation of America and work jointly with Brian Morden Foundation. 

We must have an extremely well-prepared and well-orchestrated plan to garner equitable government funding.  One successful model used by other health interest groups is that of a triad approach, including a congressional champion, a major celebrity and the field’s most respected subject expert.  For example, when a hearing impairment advocacy group successfully garnered congressional support, they enlisted Ray Charles, whose blindness magnified the import of the sense of hearing to one’s life experience. His appearance before Congress, of course, invited full member attendance, and gave audience to the real messenger—the subject expert. This effort, which was planned and executed over years to ensure its absolute readiness, was made possible because the organization tapped an influential legislator with a close interest in their cause to be their champion.

We must lobby for standards of care for Sarcoma patients so that healthcare professionals who unwittingly delay our proper diagnosis, are provided guidelines by the medical establishment. 

One Sarcoma specialist I spoke with said the number of Sarcoma malpractice suits is on the rise. The legal avenue is not open to all, though, depending on the circumstances of each case and state laws that limit justice, and without a professional standard of care, judges have no official point of reference. 

Meanwhile, there are efforts being made by Sarcoma experts, such as one physician in Arizona, to speak and publish in venues mainstream practitioners frequent. Such champions deserve our support, and we must look for others willing to educate their peers outside Sarcoma circles as well.

We must complement these ground forces with an air attack through mass media. Support from individuals and organizations, including the government, will be more forthcoming when we take a public stand for ourselves, and enlist the voices of the mass media to reach key decision-makers. A number of us with public relations and journalism experience are actively in conversation with major media outlets to further this initiative.

We must not forget our children. As a community, we must help build a bridge between the adult and pediatric Sarcoma professionals. We must not leave parents and youngsters to surmount the medical community politics and interests alone. We must take a stand for them, and make their unique issues, such as clinical trial participation, a core message from the Sarcoma community.

The collective achievements made by people who’ve never laid eyes on one another are not to be underestimated.  So much has been done by so few in so little time. To these steadfast among us, I say thank you, on behalf of us all.  And for what we will be able to accomplish working collaboratively, I say onward, charge!

V2N2 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative