By Mike Costanza
Legislation slowly making its way through Congress would give those suffering with metastatic breast cancer faster access to Social Security Disability Insurance and Medicare benefits. The Breast Cancer Coalition of Rochester has joined a host of other nonprofits to push for its passage.
Metastatic breast cancer results when breast cancer has spread beyond the breast and nearby lymph nodes to other parts of the body, most often the bones, lungs, liver or the brain.
An estimated 200,000 women and a much lower number of men in the US are living with MBC, the most advanced form of cancer. There is no cure for the disease, but treatment can extend life.
Right now, individuals who are fighting MBC and disabled must wait five months for their Social Security Disability Insurance benefits. Those receiving SSDI and younger than 65 must wait 24 months to receive Medicare coverage.
The Metastatic Breast Cancer Access to Care Act, versions of which are making their way through the US House and Senate, would waive both waiting periods.
Breast Cancer Coalition of Rochester executive director Christina Thompson spoke to In Good Health about the legislation. Her answers were edited for clarity and brevity.
Q. Why is the passage of the Metastatic Breast Cancer Access to Care Act so important?
A. The Breast Cancer Coalition’s advocacy committee has supported the Metastatic Breast Cancer Access to Care since it was first introduced by Rep. Peter King and Rep. Kathy Castor in June of 2018. MBC is a terminal disease with no known cure. Individuals with this diagnosis will be in treatment for the rest of their lives. Unfortunately, the five-year survival rate for MBC is about 33%. Congress has until the end of this year to pass the Metastatic Breast Cancer Access to Care Act or the bill will have to be re-introduced in the next congressional session in 2027.
Q. How might easier access to SSDI and Medicare benefits affect the lives of those suffering from metastatic breast cancer and their treatment?
A. When someone with MBC can no longer work, they may lose both their income and employer-sponsored health insurance. We know individuals who have faced bankruptcy while waiting for benefits and others who worked until they died because they could not afford to stop. Waiving SSDI and Medicare waiting periods would allow people living with MBC to access care without delay or the devastating financial burden of a lapse in coverage.
Q. Do the House and Senate bills have support?
A. As of this writing, the House bill has 262 cosponsors and the Senate bill seven cosponsors. There are fewer cosponsors in the Senate because senators must sign on in a bipartisan pair, one Democrat and one Republican, in what is known as the “Noah’s Ark” rule. We are appreciative that Sen. Kirsten Gillibrand of New York has signed on as a cosponsor. For the Metastatic Breast Cancer Access to Care Act to be signed into law, it must first pass in both the Senate and the House of Representatives. The Breast Cancer Coalition’s advocacy committee supports both versions of this legislation.
Q. The House bill is held up in the Ways and Means Committee. Why hasn’t it moved forward?
A. As of this writing, 30 members of the Ways and Means Committee or two-thirds of it have cosponsored the bill, demonstrating strong bipartisan support. However, Rep. Claudia Tenney (NY-24), whose district encompasses parts of the Finger Lakes region, the Southern Tier and up into the North Country, remains the only New York representative who has not signed on, aside from Minority Leader Hakeem Jeffries, who supports the bill but does not cosponsor legislation due to his leadership role. Rep. Tenney’s support for the Metastatic Breast Cancer Access to Care Act could help move this critical legislation to a floor vote.
Q. What is the Breast Cancer Coalition doing to advance the bill?
A. Our volunteer-led advocacy committee prioritizes grassroots advocacy, bringing together breast and gynecologic cancer survivor advocates, community members and coalition staff to discuss legislation affecting our community. Members are encouraged to engage their elected officials, write letters to the editor and share our advocacy efforts with their networks. Other organizations such as the National Breast Cancer Coalition and METAvivor also support the act.
Q. What can regular people do to encourage the passage of this bill?
A. Grassroots advocacy is a key component of this bill’s success. Reach out to your elected officials to show your support for this legislation. Talk with your colleagues, friends and loved ones about why this legislation matters. Time is running out.