Companies and entire industries often hire high-priced lobbyists to sway lawmakers in Washington, but sometimes average folks walk the halls of Congress hoping to get legislation passed.

This week, one Milwaukee mom did just that.

What You Need To Know

  • The Metastatic Breast Cancer Access to Care Act would would waive the five-month waiting period for Social Security Disability Insurance (SSDI) and the 24-month waiting period for Medicare benefits for eligible individuals with metastatic breast cancer

  • In the 117th Congress, the legislation had 240 cosponsors from both parties in the House and 29 from both sides of the aisle in the Senate but didn't make it to either floor for a vote

  • In March, Sens. Chris Murphy, D-Conn., and Joni Ernst, R-Iowa reintroduced the legislation in the Senate while Reps. Andrew Garbarino, R-N.Y., and Kathy Castor, D-Fla., rolled out the bill in the House

“I literally get butterflies every time that I am on Capitol Hill,” Dana Johnson told Spectrum News. “[Talking to lawmakers] allows me to be able to just make certain that not only my voice is heard, but I’m speaking for the voiceless.”

Johnson was inspired by her mother, Judy Patterson, to take up advocacy work. After Patterson lost her battle to cancer in 2003, Johnson decided she would help give other women a fighting chance. 

“The news kind of hit hard for my brother, dad and I,” Johnson said. “And I say Google is my best friend because I googled ways to advocate, whether it be through a walk or through the things the National Breast Cancer Coalition (NBCC) is doing. And I’ve been doing it ever since.”

Johnson has been with the Wisconsin Breast Cancer Coalition (WBCC) for more than 15 years and has been working with the national chapter since 2019. She’s lobbied everywhere from Wisconsin’s state capital to the nation’s, sharing her mother’s story along the way.

“My mom was a passionate mother, sister, and friend and I just want to just make certain that we know that this disease is six degrees of separation,” Johnson said. “So someone that you know – whether it be your friend, your mother, your aunt, your cousin – is affected by this. And it’s not only affecting women but also men. We all need to understand that our voice needs to be heard.”

She’s also been elevating those voices through her podcast, The Pink Table Talk, since 2022. She says it’s a passion project she launched to give more people a seat at the table.

“It allows for people to be able to talk about their journeys, whether they were a caregiver, support person, a scientist or a nurse,” she said. “And it just, again, is another level of me being able to pay it forward regarding advocacy and keeping the word out there how important it is.”

Her lobbying days in Washington can be long, but Johnson is not doing the work alone. Bonnie Anderson and Kathleen Harris have a combined 60 years of experience in advocacy work for the organization. 

“I was diagnosed with breast cancer and I know quite a few women who have metastatic breast cancer and so, we have a bill that we’re trying to get past Congress and bring into law to help women who are diagnosed with metastatic breast cancer,” said Bonnie Anderson, a board member for NBCC. 

The three met with Wisconsin’s congressional delegation, seeking passage of the Metastatic Breast Cancer Access to Care Act. It would waive the months-long waiting periods that delay breast cancer patients from accessing Social Security Disability Insurance (SSDI) and medicare benefits.

“All too often some of those ladies are dead by then. So this bill is so, so awfully important,” Anderson said.

In the 117th Congress, the legislation had 240 cosponsors from both parties in the House and 29 from both sides of the aisle in the Senate. But the bill just didn’t have enough momentum to make it to either floor for a vote.

“I find that, for us, it can take up to five years [to get something done],” said Harris. “And we wish it would be much quicker than that. But for us, it’s not unusual. Is it frustrating? Yes, it is. Is it difficult? Yes it is.”

But not impossible. Sens. Chris Murphy, D-Conn., and Joni Ernst, R-Iowa just reintroduced the legislation in the Senate while Reps. Andrew Garbarino, R-N.Y., and Kathy Castor, D-Fla., rolled out the bill in the House. 

“Cancer patients diagnosed with metastatic breast cancer don’t have the luxury of time to wait for their SSDI and Medicare benefits – they need support now,” Sen. Murphy wrote in a statement.

With the legislation back on Washington’s radar, these citizen lobbyists vow they’ll be visible too. They plan to return in May to continue to push for a speedy consideration and passage of the bill until it becomes law. 

“If we can get more people who are not only like me, but you know, again, those friend associations to help with the cause and become advocates as well, that would be like the icing on the cake for me,” Johnson said.