Your Voice Matters! Help Change Medicare with the Let Her Decide Campaign

Home Blog Your Voice Matters! Help Change Medicare with the Let Her Decide Campaign

By Krystal Brown, Insurance Coordinator at Dignity Products

In October we received an Essentially Women email newsletter detailing Senator Duckworth’s visit to Second Act Mastectomy Boutique in Chicago. The gathering of breast cancer survivors and supporters was an inspiration. After reading the article I went and asked my boss, the owner of Dignity Products, Ondrea Meredith if she would like to host an event for the Breast Cancer Patient Equity Act. Ondrea was excited about the idea, so we reached out to Nikki Jensen at Essentially Women. Nikki helped us create an encouraging invitation email to our members of Congress and Senate.  

A week later we received an email from Mike Fenley, NW Region Field Representative with Senator Burr’s office. Mike advised he could join us on behalf of the Senator. 

On Monday, December 2nd 2019, the ladies of Dignity were honored to host breast cancer survivors, EW’s Nikki Jensen, and Mike Fenley. We gathered together to discuss the importance of the Breast Cancer Patient Equity Act.  

Mr. Fenley was very knowledgeable about the bill and its place in the legislative process. Mike was straight forward in his attempts to help us get this bill passed. Five minutes into the meeting he tells us that 99% of the time, Senator Burr will not sign onto a bill unless his committee is voting for it. I have to admit I was a bit shocked and dismayed. But Mike had not joined us to crush our hopes; he just wanted us to know the reality. His goal was clear, that he believed in the bill and wanted to put us on the path to making it happen.  

Our breast cancer survivors were gracious enough to share their stories. One of our ladies described how she loved the Custom Form because it fit her chest wall perfectly; it stayed in place and helped her feel balanced. Another one of our ladies, a 28 year breast cancer survivor, shared that she has been using an off-the-shelf silicone since her mastectomy. At the beginning this form worked for her. However, over the years her chest wall has become concave and now the off-the-shelf silicone prosthesis slides around in her bra and she has to make constant adjustments. As a Medicare recipient she will have to continue to use the off-the-shelf prosthesis unless she wants to pay thousands of dollars for a product Medicare should be covering.  

Mr. Fenley listened attentively to the personal stories of our survivors. We discussed the importance of having options after breast surgery, including off-the-shelf silicone, custom silicone and reconstruction. Mike was aware that reconstruction costs a significant amount more than custom breast prosthesis. He said to us it’s a “no brainer” that custom forms should be covered. However, there is a process in the Senate, an evaluation of cost and need. Mike explained that the Congressional Budget Office (CBO) actually calculates the expected cost for each bill. That information is forwarded to the Finance Committee (which Senator Burr is a part of). As of Monday CBO has not determined an expected cost. This is hindering the advancement of the bill. 

What we need to do: According to Mike, the Breast Cancer Patient Act needs more attention before the government will take action. His best advice is to reach out to your state’s Senate and Congress members by email and share your personal story. He emphasized the personalized letter is important. A letter that is generic or looks exactly like the last letter is not as impactful as someone who shares their own experience and the importance of having options, such as the custom breast prosthesis.  

Essentially Women has already created a great website for information and even a link to contact your government representatives. If you want to see this bill passed for yourself or for a loved one, we implore you to take action. Go to LetHerDecide.org and click on “Take Action Now”, type in your zip code and share your unique story. The more voices that are heard, the better chance we have to make a difference! 

1 comment

  • Gayle Morden | Feb 22nd 2020 @ 2:57 PM

    It makes absolutely no sense to not cover the prosthesis; the "off the shelf" silicone prosthesis does not match the woman's breast, is hot and is heavy - and doesn't even resemble a breast. No two breasts are alike. There is no awareness of this injustice unless you have a personal experience. The public isn't aware of this. I think there should be a class lawsuit because this is discrimination as it is the only fabricated prosthesis not covered by Medicare.

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