Giving Mastectomy Patients Choices
A new campaign and bill pushes Medicare to fund custom breast prostheses.
- By David Kopf, Leila McNeill
- Oct 01, 2018
It’s Breast Cancer Awareness month, and Medicare has a problem when it comes to mastectomy patients: it’s not funding breast prostheses that many of those patients need. So a new public awareness campaign is working to drive legislation that will ensure Medicare funds those items.
The problem isn’t a small one. The American Cancer Society estimates that 252,710 new cases of invasive breast cancer in women and 63,410 cases of in situ breast carcinoma in women will have been diagnosed in 2017, once the year’s data is fully compiled. And when it comes to treating those patients, researchers examining National Cancer Institute data report that the number of women who underwent bilateral mastectomy (both breasts) increased from 3.9 percent in 2002 to 12.7 percent in 2012, and the rate of unilateral mastectomy (one breast) dropped from 35.8 percent to 28.9 percent.
So there is a sizable population of women who might need custom breast prosthetics, but Medicare does are not consider them eligible; it only covers off-the-shelf breast prostheses. That’s a problem because it limits patient choice, according to Nikki Jensen, vice president of Essentially Women, the women’s health service organization that is a division of VGM Group.
“For some women, the contour of their chest wall may not allow for a good fit with a flat back, off-the-shelf prostheses,” she explains. “Also, if they had one breast removed and they’re trying to match the profile of their existing breast, an off the shelf prostheses may simply just not be available to match their remaining breast. … skin tone is a really big factor. Off-the-shelf prostheses are usually in one tone. … If you’re a woman who has a concave area and you’re trying to fit a flat-backed mastectomy prosthesis in a mastectomy bra, the women that we talked to would explain to us that it moves when they move. So when they walk into a room they’re very self-conscious.
“Conversely, with that when it comes to a custom breast prostheses, there are literally dozens of skin tones that the patient can match to closest to their skin tone,” she Jensen. “Then as it’s custom scanned to their chest wall, it’s custom fit like a puzzle piece to match their chest wall contours.”
The point of frustration became clear when many of Essentially Women’s 575 member companies brought the issue to the fore.
“It’s an injustice to women,” Jensen says. “And the very emotional and sensitive discussions and conversations that they have with the patients that they see every day, they see this as definitely a frustrating point.
Problematic Policy Interpretation
More vexingly, there’s already a HCPCS code, L8035, and a fee schedule for custom breast prostheses, which were established by Medicare since 1999, according to Jensen.
The problem likely comes down to interpretation. When Jensen and her colleagues talk to physicians, patients and breast cancer support organizations, they all reference the Women’s Health and Cancer Rights Act of 1998, which states that if a health insurance company covered mastectomy surgery that they would also be required reconstruction and breast prostheses. So, there are private insurance and health programs that do fund custom breast prostheses.
However, when Medicare interpreted the Act, it went with the least costly option, which was off-the-shelf prostheses, contending that a custom breast prosthesis did not increase functionality. Additionally, Medicare hasn’t since reviewed its position or the solutions currently available.
“I think that when the Women’s Health and Care Act was issued, custom prostheses for breast cancer patients weren’t really available,” Jensen explains. “Now we fast forward to 2018, we have a lot more technology available to us, and quite frankly, we can do better.”
Make Me Whole Again
That starts with raising the issue’s profile via a public awareness campaign. Jensen says Essentially Women interviewed breast cancer patients to learn more about their experiences, including their experience with off-the-shelf and custom breast prostheses.
“What we learned from them is that after everything they’ve been through, with diagnosis and treatment and then getting onto that survivorship side of things and moving forward, they just wanted to feel like themselves again and feel whole,” Jensen says. “And so we named the campaign Make Me Whole Again.”
The campaign, found online at makemewholeagain.com, aims to ensure that women can choose the option that works best for them, whether that is custom or off-the-shelf.
“Whether that’s reconstruction, off the shelf prostheses or a custom breast prostheses, we think they should be able to choose what best meets their needs,” Jensen says. “And so on that landing page, we have all the information they need as far as background.”
Additionally, users can fill out a contact form where they can share their story or share their support that goes to the people for quality care organization.
And soon that website will include information regarding legislation Essentially Women and VGM Government Relations are working to introduce into Congress. Jensen explains that while Medicare does have the latitude to make a regulatory change, meetings with Medicare over summer have led Essentially Women and VGM Government Relations to conclude that the legislative route might be the better course.
To that end, the two organizations traveled to Washington, D.C. last month to talk to lawmakers about introducing a bill that would amend Section 1861(s)(8) of the Social Security Act to allow Medicare to reimburse for custom breast prostheses. In fact, the legislative language for House and Senate versions has already been drafted by Rep. Rod Blum (R-Iowa) and Sen. Tammy Duckworth (D-Ill.) respectively, according to Tom Powers, director of VGM Government Relations.
Now the hunt is on for Congressional champions to back the bill (hopefully bi-partisan leads who are both women), and then building support for the bill.
“With both the House and Senate back in session, at least for a short period, it’s our hope that both sides would drop the bill relatively soon,” Powers says, “so that we can start doing our job in terms of messaging out in October, during Breast Cancer Awareness Month.”
In the meantime, Jensen says providers and patients can start to get involved by following the Make Me Whole Again campaign on Facebook, Twitter, and the web page.
“They can fill out the information or the contact form and let us know what they’re interested in,” she says. “And as we have the bill introduced and new information, we can send them information for them to go back to the site and take action to send emails and messaging directly to their members of Congress.”
This article originally appeared in the October 2018 issue of HME Business.
David Kopf is the Publisher HME Business, DME Pharmacy and Mobility Management magazines. He was Executive Editor of HME Business and DME Pharmacy from 2008 to 2023. Follow him on LinkedIn at linkedin.com/in/dkopf/ and on Twitter at @postacutenews.
Leila McNeill is a former associate editor for HME Business and Mobility Management.