Apologies to NBCC and our audience but somehow the summaries of other NBCC meetings has been lost from the site.
The First International Breast Cancer Advocacy Conference, March 1997 held in Brussels, Belgium
sponsored by the National Breast Cancer Coalition:
The first exciting thing that happened to me was seeing the comet on Wednesday evening/morning over the Atlantic Ocean. It looked like a giant yellowish spotlight in the beautiful star-filled sky.
Upon arriving, Peggy L. and I along with Mary Joan S. of the Long Island Breast Cancer Coalition rushed out to tour Brussels. We saw beautiful old and new architecture, lots of shops and restaurants but no sun.
The conference officially started with an evening reception. We all 'worked' the room meeting as many women from other countries as possible. It was absolutely thrilling to do that.
I asked them all what the state of medical treatment was and if costs were covered by the government or private insurance companies. Not surprisingly, most countries had government coverage for the most part. A woman from Peru told me that although there was no coverage there, the costs of treatment were very cheap.
In Scotland and Germany treatment included homeopathic methods. Norway and Sweden had 'alternative' treatments covered fully. Norwegian women were also offered a lymphedema prevention program of massage. In Holland private insurance was the norm. In Cameroon and Guyana there was simply no access to treatments, no oncologists or equipment available.
Jamaica too had very little available treatment. Italy offered a national health program with mammography covered every other year for women aged 50-69. Several speakers ended up mentioning that age group. It seemed that older women's needs might be ignored. This is something to explore further. There are so many issues.
From the opening talks-obstacles to access include
education, low social and legal status, cultural and religious beliefs, distance and poor transportation,
cost, quality and appropriateness of health serv.
Ways to influence the research agenda include:
asking for something specific,defining goals,
finding allies,using your strengths
An Italian speaker on the drug approval process reported that very few companies control the marketplace and that the main focus of their efforts was to avoid doing harm, with the concept that innovation was not so important or valued in the marketplace. It is not even critical for the drug to be all that useful as long as it can compare well to standard therapies.
He stated that the main driving force in drug approval is market pressures. There is a need for drugs to be approved more and more quickly. Therefore public opinion and expectations could be very important to the process. He felt that taxol and other new drugs had fallen into this process and that therefore their effectiveness had been overstated. (not good news for us) He said 10-65% of all trials failed using 4000 subjects. He stated that there with 44-87 human studies done 3-14 showed substantial evidence. He felt that a full 25,000 human subjects were 'wasted' in the way they were used.
He also said that drugs could be approved with a 'surrogate' end point-like reduction of tumor but no cure. (define cure) He pointed to the massive effort to produce osteoporosis drugs even though there was no substantial indication of benefit the drugs could be approved on some evidence of fracture improvement. He said the U.S., U.K., German and Japan basically controlled 60-65% of the marketplace. There is no drug control in Latin America.
Another speaker mentioned that Poland has the highest cancer rates in their industrialized areas and lowest near the eastern border with the least industry. There are 600 oncologists in Poland. Their physicians get 6 days of training in oncology. There are 2 accelerators in the country with 170 mammography machines but many are old models(higher radiation exposure). He also said pharmaceutical companies are running single drug studies in Poland.
A workshop run by Lyne Swinburne(Australia) and Martine Picart, MD(Belgium) discussed the International Research Process: How are decisions made?
Dr. Picart is head of the European Organization for Research and Treatment of Cancer(EORTC) which works with more than 360 research institutions both multinational and multidisciplinary. She said their function is to disseminate knowledge and has four branches:
treatment;research;prevention research; and education & training
Many of the studies she quoted from were very similar to American studies and they do not seem to be breaking any new ground. She was challenged on several points including a discussion of mastectomy vs lumpectomy with radiation-the ten year out study indicated no difference in survival(as in the U.S. study) She had stated that lumpectomy alone was much worse survival.
There was no arm for lumpectomy alone, which in the U.S. study, a copy of which was in our loose-leaf binders, indicated similar survival albeit with many more recurrences.
There is a French and an Israeli study on sentinel node dissection rather than full axillary dissection, an exciting new concept that may save women much trouble and greatly reduce the (lifetime) risk of lymphedema. The EORTC has published a manual for breast cancer.
A talk by Patricia Ganz,PhD discussed pyschosocial issues. She stressed that patient type is NOT associated with risk of cancer. Women who were pressured to make a decision too soon experienced a more lasting anger at their treatment. Women with early reconstruction had better adjustment(subject to discussion in my mind). Some studies show that chemo slightly increased survival in late stage bc.
She also mentioned that in her experience, lumpectomy seemed to show more lymphedema than mastectomy patients.
A group of researchers, doctors consumers who review published and unpublished papers on a worldwide basis and publish an electronic newsletter. A breast cancer group is forming now. They are seeking consumer advocates to participate. Identify relevant studies, prioritize reviews, critically appraise reviews, fundraise, disseminate and implement the results of the review process. For information contact:
Ms. Davina Ghersi
The University of Sydney
NHMRC Clinical Trials Centre
Locked bag 77
Camperdown NSW Australia 22050
Tel:61 2 582 5000
F61 2 585 1863 e-mail firstname.lastname@example.org
Overall, sharing information and speaking with the incredibly brave and intelligent women who attended was the best part of the experience.
Held in Washington, DC
Avastin: Letter to Dr. Von Eschenbach (head of FDA)
By Jane Baker Segelken, Advocate
Advocate's Role in Research Part II (includes footnotes)
References for An Advocate's Role in Research
Appendix I for An Advocate's Role in Research
Appendix II An Advocate's Role in Research
In both 2007 and 2008 Ann Fonfa, founder and president of The Annie Appleseed Project has delivered two workshop talks "Updates in Natural Strategies for Cancer".
The moderator in both 2007 and 2008 was Jessica Henderson, PhD. Dr. Henderson brought students from her college to the meeting. Their youthful energy and enthusiasm inspired many of the long-time advocates at the meeting.
The other presenter was a nurse, Debra Barton, RN, PhD, who has been involved in complementary and alternative cancer therapies for a long-time. She is a member of the Society for Integrative Oncology. Her presentations were very well received by the audience at each of the two workshops.
Both in 2007 and 2008, the two workships (delivered back to back the first year and on two different days in 2008), were very well-attended. In fact they may have had the most participants of any of the breakout sessions.
Photo from left, Debra Barton, RN, PhD, Ann F, Jessica Henderson, PhD, speaking in 2008
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