An estimated 168,000 Americans live with metastatic breast cancer. While treatments exist, there is no cure. And with average five-year survival rates at just 29%, time is a privilege many living with MBC do not have.
Intensive, immediate treatment can be a gamechanger. But too often, financial and systemic challenges create barriers to accessing desperately needed care.
Those newly diagnosed with metastatic disease often face an onslaught of symptoms that make it difficult to work. Without income, they must turn to safety net programs such as Medicare and Social Security Disability Insurance (SSDI). Under current regulations, they must complete a five-month waiting period before receiving SSDI, and a 24-month waiting period for receiving Medicare benefits.
For some, these waiting periods mean never receiving the benefits for which they would qualify. For others, it may mean making a difficult choice to delay recommended courses of treatment; potentially leading to disease progressions that endanger health outcomes and quality of life.
A bill now with Congress could change all that. Introduced in May 2021 by a bipartisan group of legislators, The Metastatic Breast Cancer Access to Care Act (H.R.3183/S.1312) would immediately waive burdensome waiting periods for SSDI and Medicare for people living with MBC, allowing them to maintain vital medical care and support.
While the legislation has yet to be passed, supporters of the bill are determined to get the job done. As the end of the 117th Congress approaches, congressional leadership must act on the MBC Access to Care Act by the end of the year, or the process will need to start over again with the incoming 118th Congress.
Advocating for Congress to take action for MBC care
Patient advocate and Alliance member Lesley Glenn is one of many supporters working to influence legislators to take action on this issue. Lesley has been meeting with members of Congress for years to share her personal story, and ask legislators to advance the MBC Access to Care Act. Strictly speaking, the concept is not a novel one – legislators have already passed similar bills to remove waiting periods for benefits for people living with end-stage renal disease, and for those living with ALS.
“We need to push Congress and get them to move on it,” Lesley emphasizes. “You’re asking people to wait when they’re living with an incurable disease, and they might not even make it through the waiting period. And that’s the reality of it. Give them the help now.”
It’s a call that has been taken up by the Susan G. Komen Center for Public Policy, which featured a campaign to advance the MBC Access to Care Act at the organization’s spring Advocacy Summit.
Through the campaign, a letter of support from organizations representing the breast cancer community will be delivered to House and Senate leaders on Metastatic Breast Cancer Awareness Day, October 13, to urge legislators to advance the issue.
The campaign also has a web page where individual supporters can add their name and address to send a pre-drafted letter via email to their Members of Congress, asking them to co-sponsor the MBC Access to Care Act.
“This Breast Cancer Awareness Month, we’re urging our entire community to take this simple action that can make a real difference for people living with metastatic breast cancer,” says Laurie Campbell, Executive Director of the MBC Alliance. “No one should have to wait for the care they need, and together we can make an impact.”
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