IBC Awareness Day Enacted
Posted on 12. Jan, 2023 by ibcneco1 in News
January 12, 2023
Inflammatory Breast Cancer Awareness Day established in Massachusetts
Governor Charlie Baker signed the bill into law on his final day in office
BOSTON (January 12, 2023) — The legislature last week approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC).
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Many women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
“Having a dedicated day to educate and increase awareness about this disease will do so much to offer hope and support for patients and help encourage more research,” said Susan Asci, of Whitman, a 22-year IBC survivor and founder of IBC-New England Region Inc., the charitable non-profit organization that initiated the proposal. “Receiving a cancer diagnosis is devastating. When you have a rare disease that has not been widely studied, it can make the diagnosis even more challenging and isolating. Often patients and their families have never heard of IBC.”
“I am so pleased that the legislature approved the bill and Governor Baker made it a permanent day in Massachusetts,” said Jim Brett, president of The New England Council and a founding board member of IBC-New England. Jim is a long-time supporter of resources and education for patients with IBC. “It has been inspiring to be part of this group of friends, providers, and caring professionals trying to make a difference for patients with IBC. One thing is clear: Hope is a powerful force, especially for people fighting a serious illness. And this Awareness Day is an important tool is sharing information and building hope.”
Representative Sean Garballey (Arlington), who is a board member of IBC-New England, sponsored the bill in the House and led the effort to advance it.
“I am honored to be part of this effort to help people who have been suffering from this disease. Having an awareness day is important in the fight against cancer. Setting aside this day is an opportunity to shine a light on this health issue and educate people more about this disease,” Sean Garballey said. “It’s an opportunity for advocates and health care providers to educate and inform. Information is an important part of quality health care.”
Symptoms of IBC are atypical and there is not generally a lump present. The cancer is virtually undetectable with standard mammography. Instead, most patients see a rapid onset of swelling and skin changes. Patients need to seek treatment as soon as possible. Often the disease is diagnosed at an advanced stage.
Funding research for rare cancers can be challenging. Less than 10% of clinical trials nationally include women with IBC. In New England, there are several cancer centers that are working to change the landscape for research. Dana Farber, for example, has a dedicated IBC program and is leading several clinical trials.
There are also more opportunities for peer support for patients and networking in the region. In 2001, Asci formed a networking group for women with IBC in the Boston area. Dana Farber also has a support group that provides education for IBC patients.
The awareness day provides an opportunity for providers, cancer centers, and patient organizations to hold educational events for the public, patients and their families. These activities may include presenting and distributing information about IBC, services, and resources.
“It will mean so much to patients with IBC, and their families and caregivers, to know that more people are looking at this disease, talking about it, and trying to understand it,” Asci added. “Knowledge is power. And the more we share, the more people we can help.”
For more information about IBC New England, and this effort, see the organization’s website, ibc-ne.com or call Susan Asci at 781-447-0848.
See the link to State House website for passage of the bill:
https://malegislature.gov/Laws/SessionLaws/Acts/2022/Chapter359(Note: the headline reads the first Tuesday, but the actual date is the second Tuesday, as reflected in the body of the text)