Research Advocacy: ThyCa and the 2007 AACR Scientist-Survivor Program: An Experience in Collaboration, Education, and Inspiration
By Joel Amromin, ThyCa Los Angeles Support Group Co-Facilitator and Board Member, ThyCa: Thyroid Cancer Survivors’ Association
For the last few years, I have represented ThyCa: Thyroid Cancer Survivors’ Association at a number of forums, ranging from local health fairs to the nternational Conference of the American Thyroid Association.
At those functions, I worked in our booth, distributing ThyCa literature, answering questions from physicians and patients, and fielding requests for more information. So I was ready to answer the call when asked if I would represent ThyCa in the Scientist-Survivor Program (SSP) at the Annual Meeting of the American Association for Cancer Research (AACR), which was being held in Los Angeles in April 2007.
Several weeks later, I began receiving requests for a bio, a photograph, answers to a detailed questionnaire, etc. I also received an extensive prerequisite reading list that included one book (Genome by Matt Ridley) and several journal articles.
I learned that I was not just working a booth, but that I was going to be a delegate to the AACR Scientist-Survivor Program® (SSP) at the AACR Annual Meeting. My first reaction was, “What have I gotten myself into?!” My second reaction, after looking at the AACR web site was, “This looks fascinating!” So I harnessed some volunteers to staff our exhibit booth at the AACR meeting and got ready for the five days of Scientist/Survivor Program meetings.
AACR and SSP Background
The AACR Annual Meeting is an opportunity for clinical and laboratory cancer researchers to get together and present papers on their work. The papers range from initial theoretical presentations to detailed results of clinical trials. There were about 6,000 such papers presented in the five days. There were also thousands of posters describing the work of various researchers.
The Annual Meeting is an opportunity for the researchers to exchange ideas and data in the rapidly changing field of cancer detections, prevention, and treatment. The meeting also celebrated the 100th anniversary of the AACR. (In 2009, they will celebrate the 100th AACR Annual Meeting.)
The SSP, now in its ninth year, is held concurrently with the AACR Annual Meeting. The approximately 40 SSP attendees represented patient advocates, survivors, and support groups from wide ranges of cancer types, group types (support, advocacy, etc.), and locations, including representatives from Uganda, Israel, and South Africa.
Active participation in the program provided a wealth of opportunities:
- Learning about the latest cancer research advances by attending both AACR technical presentations and special presentations to the SSP attendees.
- Learning from each other through informal discussions and moderated forums. A special SSP dining room and headquarters guaranteed that we would have ample opportunity to talk.
- Learning about and contributing opinions to government meetings on medical privacy issues.
- Obtaining access to the extensive AACR online library of cancer research publications for our respective organizations.
For the remainder of this article, I’ll highlight just some of things at the meeting that were especially significant to me. I’ll also touch on one disappointment.
A Better Understanding of What This Thing Called “Cancer” Is
We thyroid cancer patients are generally pretty good at learning about our disease, getting the right diagnostics and treatments, and managing our relatively simple (for most of us) follow-on testing.
But do we really understand what cancer is? Our cancer seems so different from many others. So what makes it cancer, just like the others?
One of the articles we read in preparation for the conference (“The Hallmarks of Cancer,” Hanshan and Weinberg, Cell, volume 100, 57-70, Jan. 7, 2000) described six traits exhibited by all cancers:
- evading programmed cell death (apoptosis)
- ability to generate their own growth signals
- insensitivity to anti-growth signals
- sustained development of abnormal vasculature (angiogenesis)
- ability to replicate without limit
- tissue invasion and metastasis
That’s a pretty straightforward list. Keeping such a list in mind as we study thyroid cancer and go to our own conferences can help organize the wealth of information we absorb. It can also help us see how information regarding other cancers can apply to our own cancer.
An Analysis of Advocacy and Survivorship
In an excellent presentation to the SSP attendees, Jane Perlmutter, an independent cancer advocate, described five types of cancer advocacy:
- Outreach and Education
ThyCa is involved in all five of these areas to greater or lesser degrees. Ms. Permutter’s presentation presented a good framework and some good resources that I will be presenting to the ThyCa Board.
CR is an extremely well-researched, written, edited, and illustrated quarterly journal published by the AACR for “the rest of us.” The magazine, now just over a year old is “about people and progress in cancer.” The CR mission statement says, in part, that “CR will provide a forum for sharing essential, evidence-based information and perspectives on cancer research, advocacy and survivorship.”
The magazine includes technical articles written (and beautifully illustrated) for non-technical people, information about volunteering, stories of well-known (e.g., Frank Zappa) and unknown cancer survivors, cancer and minorities, care giving, and many other topics.
While thyroid cancer, because of its rarity, may not make the magazine headlines soon (but it might), the information in the magazine is very relevant to us. All cancer survivors should have a chance to examine this journal and, if desired, subscribe. I will be subscribing and will show the magazine to our local membership. I would like to see stacks of these at our next ThyCa International Conference. For more information about CR, visit http://www.crmagazine.org.
The representatives to the SSP ranged from small local support groups to large international cancer research funding groups. Between those extremes were groups that advocate for specific demographic groups, specific cancers, and specific geographic areas. They operated on shoestrings and huge institutional budgets.
We each had the opportunity to present our organization to the group. We also had plenty of opportunity to socialize. In the process, discussions were started and relationships were built. I personally learned some things about management of the organization that I could bring back to my discussions as a member of the ThyCa Board of Directors. I learned about new opportunities for communicating with rural areas, which I also passed on to others.
Excellent Technical Sessions
In addition to the highly technical sessions held for the researchers, we had a number of sessions where the top researchers came to us. They brought news of some of the latest research and other information. They presented it in terms we could all understand.
All the presentations were exciting and enlightening, but the real eye-popper for me was a presentation by Jean-Pierre Issa, MD from the M.D. Anderson Cancer Center in Houston. He talked about epigenetics, which studies the portions of the DNA that aren’t genes. It also studies structures within the cell that enable DNA to direct protein synthesis.
It turns out that various problems in these epigenetic structures may be a key to the development of cancer and, therefore, can be exploited to help fight cancer. In fact, many cancers may have half a dozen gene mutations, but dozens of epigenetic mutations.
Dr. Issa said we have mapped the human genome; now the buzzword is mapping of the human epigenome. I’ve recommended to our Chair that this topic and, possibly, Dr. Issa be included in our next International Conference.
A Disappointment… Somewhat
The AACR conference included over 6,000 papers and, to my rough estimate, about 12,000 poster presentations. Of those, I found only one poster and no presentations that dealt with thyroid cancer, even in the poster sections on endocrinology and head and neck cancer. I skimmed most of the presentation lists, and might have missed one, but there was definitely a shortage of interest in thyroid cancer, despite its increasing frequency. That’s not to say that much of the work about other cancers couldn’t also apply to thyroid cancer.
However, based upon my observations, I think that we as a thyroid cancer advocacy organization should try to raise the visibility of thyroid cancer research at the AACR level. We aren’t doing the research and can’t present the papers, but we can talk to those who are about submitting more papers to the AACR.
Because of the excellent relationships we have built with the thyroid cancer research community, we should be in a good position to undertake this effort. In the long run, it brings thyroid cancer research into close contact with other cancer research, which hopefully would benefit both. It also brings more visibility to thyroid cancer research, which might make it easier for researchers to raise funds.
The 2007 AACR Scientist«Survivor Program will stay with me for a long time. I would like to see ThyCa participating in next year’s program, which will be in San Diego, California.
I believe, especially after attending this meeting, that we can learn exciting things from areas outside thyroid cancer research that may someday also help the fight against thyroid cancer.
That’s one of the things that excited me about Dr. Issa’s presentation on epigenetics. New epigenetic treatments are targeting circulating tumors such as leukemia. But work has already started on applying the concepts to solid tumors. Learning about such topics is inspiring and presents a new vision of the future.
Finally, I’ve started bringing CR magazines to our local support group meetings. If I had to highlight one thing that can bring the world of cancer patients and cancer research together outside the context of the AACR SSP meeting, itself, it would have to be the magazine.
If the cutting-edge technical information presented in non-technical terms stimulates just one layman to have some out-of-right-field idea that might lead to progress, all the effort poured into the magazine will have paid off.
If just one volunteer learns how to raise money for research, provide direct patient support, or do something else to accelerate the fight against cancer or improve the well-being of cancer survivors, all the effort poured into the magazine will have paid off.
If just one survivor sees a ray of hope that enables her to live a meaningful and productive life despite cancer, all the effort poured into the magazine will have paid off.