Search Results: 'advocacy' 2011 ASCO Abstracts

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Commentary: Accountable Care Organizations and Community Empowerment - — JAMA

Less apparent to the public during this period of historic change are the struggles occurring in US board rooms among hospital groups, specialty physicians, and primary care clinicians—debating quietly but intensely over how to form these ACOs, how to be accountable for care delivery, and how to divide anticipated savings derived from ACOs. However, in most of these settings, important constituencies—middle class and other working patients whose health and welfare are at stake—are not included in the discussions.......................The high and accelerating increases in the cost of health care and the limited roles of patients in decision making central to health and health care delivery are too real to ignore. Decision making by distal proxies such as elected legislators may no longer be enough to address the United States' mounting problems with health care, outcomes, and costs.

Annual Report Card on Cancer in Canada(TM) reveals canadians fighting cancer on two fronts: the disease and the system

Annual Report Card on Cancer in Canada(TM) reveals canadians fighting cancer on two fronts: the disease and the system Cancer Advocacy Coalition of Canada Provides New Insights into Current Cancer Landscape
Toronto, April 13, 2011 - The Cancer Advocacy Coalition of Canada (CACC) reveals in its 2010-2011 Report Card on Cancer in Canada that the current roadmap for cancer care in this country presents patients with numerous unnecessary barriers to accessing the care and support they need, from prevention programs, to timely diagnostics and access to treatment. At a time when they are at their weakest and most vulnerable, too often Canadian cancer patients are forced to fight not only their disease, but the healthcare system as whole, making an already complex and challenging journey even harder.....

For more information, or to view and download the 2010-2011 Report Card on Cancer in Canada, visit the CACC's website at www.canceradvocacy.ca.

Cancer-advocacy group slams barriers to treatment - The Globe and Mail

Note: includes media commentary regarding financial conflicts of interest, doctors' barriers in advocating for patients....

Engaging Champions in Public Health Policy, Programming, and Practice

SUMMARY: A “champion” is a “charismatic advocate of a belief, practice,
program, policy and/or technology.”1 It is a champion’s unique combination
of skills—passion, persistence, and persuasiveness—that distinguish him
or her from other advocates. A 2007 Cochrane review concluded that the
use of opinion leaders can successfully promote evidence-based practices.2
Engaging influential opinion leaders can be an effective advocacy approach
for advancing social, economic, political, or public health issues.

Disease Information from NORD, National Organization for Rare Disorders, Inc./Advocacy groups sign on

abstract: Policy and advocacy in the quest for effective translational breast care research.

From unwanted interference to indispensable partner - Masterpiece - Issues 35 - Articles - Cancer World - Education & knowledge through people & facts

From unwanted interference to indispensable partner

"Three years after taking up the presidency of Europe’s first international breast cancer coalition, Gloria Freilich faced her most embarrassing moment. It was 1997 and she had started to address a major meeting of oncologists in Lisbon, talking about her new organisation, designed by women for women, called Europa Donna. Then a doctor stood up and challenged her. What right did a layperson, he asked, have to address a thousand oncologists at a medical meeting?..."

media news: Symptoms have little value for early detection of ovarian cancer including editorial commentary

OCATS press release: June 18, 2009 Ovarian/Gyn Cancer Patient Advocates in Saskatchewan

REGINA, June 18, 2009 – Today OCATS learned that Dr. Maryam Al-Hayki, Gynecologic Oncologist for southern Sask has been contracted to provide gynecologic cancer care services for the women of Southern Saskatchewan, including chemotherapy. Many details are yet to be determined and the group of gynecologic cancer patients look forward to hearing more from the Minister of Health Don McMorris. The Ministry, SaskHealth, Sask Cancer Agency and the Health Regions all working towards the implementation of a proper Gynecologic Oncology Program for Saskatchewan, with a Unit each in Regina and Saskatoon, and now with this contract; we hope that all four of Saskatchewan’s gynecologic cancer specialists will be retained for a long time to come. With this progress it is also hopeful that additional gynecologic oncologists can be recruited.

A long time request of the OCATS group to meet with the Minister of Health, Don McMorris has now been scheduled for Monday, June 29th at 11:00 a.m. A Director of OCATS, Darlene Gray said, “we are so relieved to hear that a contract has been extended to Dr. Al-Hayki and we hope it is a contract that will keep her here for a long time. Hopefully, this will result in immediate oncologist availability for patients of all cancers. Patients also need to be assured that a proper gyne oncology program is established to ensure the retention of both Dr. Al-Hayki and Dr. Brydon in Regina and the two specialists in Saskatoon. We are pleased but still have many questions.”

The OCATS group expects to hear more at a meeting with all the stakeholders including SaskHealth, Sask Cancer Agency, the health regions and the women’s cancer specialists this coming week as soon as all the participants can meet. Ms. Gray said, “We are very much appreciative of this opportunity to hear about the program in full and also to provide our input, since all we have right now is a theory. Women need to know that all the resources and funding will be in place to ensure the gynecologic oncology Units in Regina and Saskatoon will have all specialists, support staff, technical and diagnostic testing and tools are in place. We hope to see a plan for trained or a training program for technicians to run the new ultrasounds, pathology and educational instruments and programs required for a true gynecologic oncology program.”

Darlene was clear in stating that, “This has been a stressful time for the volunteers in our group and a very worrisome time for patients needing chemotherapy and other treatment, as it has been for the doctors and administrators. We are relieved, happy and a bit shell shocked. It’s comforting, for all I’m sure, to know that the specialists can go back to the business of treating patients. We want to thank the Ministry and all the bureaucracies involved for doing the right thing for women in Saskatchewan, current and future patients. We feel that once the administrators understood how urgent and critical the gynecologic cancer situation in Saskatchewan was, everyone moved very quickly to put a solution together. We hope to make our gratitude known at these upcoming meetings. Still, we feel that a patient’s experience must be included in the process and we look forward to providing that to the Minister of Health personally on June 29th, and to the team in the upcoming week. This is a wonderful beginning.”

For more information contact Darlene Gray in Regina at 306-775-1848, cell 529-3199 or in Fort San at 306-332-3957, or darlenegray@sasktel.net

Let Me In!

power point presentation: Let Me In!

access link below:

www.scribd.com/doc/13044110/Ovarian-Cancer-Let-Me-In

Ovarian Cancer: Let Me In!

Publish at Scribd or explore others: Health & Medicine Presentations & Slid cancer public

NO RESPONSE BY DECISION-MAKERS - sad! Ovarian Advocate - Caelyx for British Columbia Ovarian Cancer Women - funding vs life

FYI - Re: http://www.ovarianadvocate.ca/



February 17th, 2007


Sandi Pniauskas
117 Glen Hill Drive
Whitby, Ontario, Canada
L1N6Z8

Dear Madam/Sirs;

Re: Funding Caelyx for Treatment of Recurrent Ovarian Cancer in British
Columbia

I am writing to appeal to you to ensure that Caelyx is funded as a
treatment for recurrent ovarian cancer, or as deemed necessary, through
patient/physician decision-making. I do this because I have compassion,
understanding and intimate knowledge of the issues which ovarian cancer
women, their families and their friends face. From the initial
pre-surgery consultations to the last breath our ovarian cancer women
take. Research for decades is proof positive that ovarian cancer is the
most lethal of all gynecologic cancers. And yet, how far have we
actually progressed? 'Lethal' today is still the word used to describe
ovarian cancer. And yet, with our lack of decision-making, we actually
in fact consider our ovarian cancer women to be dispensable. They
deserve every chance and in light of extensive research, which you have
already received, the underlying issue of lack of actual access is not
comprehensible to me. I don't believe that I need to educate you on the
evidence-based research which provides sufficient criteria for simply
funding this chemotherapy for ovarian cancer women - today.

Further, it is irresponsible to confuse the economies of providing
Caelyx to ovarian cancer women in need. Confusion -  because it is with
the hopes of remission or extension of life which no economies can ever
truly value in concrete terms.  Further, recent reports indicate that
B.C.'s coffers are flush with funds. It therefore is a matter of
morality and quite simply the ability of the decision-makers to actually
make this decision.

Let us not continue to make mistakes of the past. The disparities in
access to either life-saving or life-extending therapies across
Provinces are well known. As a matter of fact, in the late 1990's,
Canadian ovarian cancer women experienced the very same issue between
Quebec and Ontario. Taxol was accessible to ovarian cancer women in
Quebec, and not in Ontario. It seems we have not yet learned our lessons
and are repeating the same mistakes but at the sacrifice of the valuable
women in our lives. The obvious lesson is that ovarian cancer does not
care where you live, but your survival does. How sad, in fact, that
while Health Care Ministers, Provincially and at the Federal level
discuss these issues, we simply are unable to recognize the deaths - the
actual realities while we wait for decisions. This is not acceptable and
our ovarian cancer women cannot wait. More importantly, the system which
you represent, has failed these women. It is a moral issue and only a
moral issue which stands in the way of ovarian cancer women in British
Columbia having access to this particularly effective chemotherapy.

Since my ovarian cancer diagnosis in 1999, I have been in the very
fortunate situation of surviving. But this survival comes at a price. It
is and has been typically a short term friendship, but one of value,
which words defy. It is and has been their absolute strength and will to
live and, yes, to suffer in silence, that alone deserves our respect by
doing the 'right thing'. You have the ability to give my ovarian cancer
women friends in British Columbia the will and the ability to improve
their life. This is a 'gift' through really a few strokes of the pen.
You can fund Caelyx for our ovarian cancer women in British Columbia. We
cannot wait, we should not have to wait.



Thank you.

Sincerely,

Sandi Pniauskas
email: sandipn@sympatico.ca

Ovarian Cancer Advocate

Ovarian Cancer Advocate

"This webpage has been established by a group of women diagnosed with ovarian cancer in British Columbia. "