Member Spotlight: A Cause Worth Fighting For

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Kim Neel of Alala

When a woman hears she has beaten breast cancer, her life should improve. The fight is over, she’s in the clear, it’s time for things to go back to normal. But, as everyone in the industry knows, that is simply not the case. Side effects of the treatment that saved her life can lead to conditions like lymphedema – a condition that can cause fibrosis, infection, pain, and impaired functioning of the affected body part. Kim Neel, cofounder of Alala, has made it her goal to help those women. 

Alala, located in Columbia, South Carolina, was established to help breast cancer survivors through education, support, and supplies. Both cofounders, Kim Neel and Sherry Norris, discovered they had lymphedema and have been advocates ever since. Their activism led them to become outspoken supporters for the Lymphedema Treatment Act (LTA). The LTA is a bill intended to undue Medicare changing their policy in 2010 to no longer reimburse for compression garments that would help women with lymphedema.

“I describe the LTA as an awareness act to get Medicare, and in turn Medicaid, to recognize and honor a lymphedema diagnosis,” said Kim. “These programs should cover prescribed and medically necessary garments to assist in the comfort and control of lymphedema. Sherry and I reached out statewide to form an advocacy group. When the LTA came along, it was a great way for us to have a focus.”

As a former congressional intern, Kim knows that passion alone won’t be able to make this bill a reality. It takes persistence. When she was diagnosed again with breast cancer in 2017, she was going door‐to‐door in Washington, D.C., with fellow advocates visiting with South Carolina and Tennessee representatives and senators.

“I’ll keep speaking and presenting anytime I can, including social media, in-person at gatherings, and showing up when my representative visits my town,” Kim remarked. “Congressman Joe Wilson became a co‐sponsor after we were in the ice cream line together at a local Independence Day parade. I’ve also been calling, calling, calling my senators and representatives. I’ve actually been blocked by one of my senators…so now I send emails to him.”

She has also done her fair share to bring other advocates on board. In fact, organizing was her first step when she heard about the LTA. To communicate the importance of the bill, she gathered signatures for petitions at support group meetings, at church, at the grocery store, and even with her customers.

“Alala publishes an annual list of South Carolina congressmen who are NOT onboard with the LTA,” said Kim. “That list goes into everyone’s bag as they check out. Our customers have called their senators and congressmen to the point that we were visited one day by Congressman James E. Clyburn’s deputy district director, who pledged support any way they could outside of a vote.”

Education has also been a key component of moving the bill forward. For instance, Kim sends a spreadsheet that shows providing compression garments could save Medicare $26 million in hospital costs in South Carolina alone. Outside of talking numbers, she also educates those looking to become advocates.

“First, you educate on what it is,” Kim suggested. “If you notice that their arm or leg is swollen, go from there. Women also need to keep calling their representatives. Don’t stop! Engage everyone you know who is looking for something to do; they just need a phone. Write a script to read, or better yet, use the LTA tool kit. Emails are good, too. You can also sign up with the LTA group.”

Kim added, “Face-to-face is best with your congressman. Check the website to find out when your representative will be visiting your hometown. Show up and speak up!”

She even had a piece of advice for women looking to champion their own causes, “Share pictures and don’t be afraid. If you talk about something you know, your passion and spark will come across to your audience. Remember, we’re all in this together on so many levels.”

To connect with Kim, you can email her at [email protected].

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