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Sarah Russell Goddard, ’08, and 3L Sarah Kay have a lot in common. In addition to their IU McKinney connection, they both have a passion for healthcare advocacy, and the Leukemia and Lymphoma Society. They put all of that to work recently when they talked about their experiences with Congresswoman Susan Brooks, ’85, and representatives in the office of Senator Todd Young, ’06.

Russell (in the photo at left, above) began her legal career working as an ERISA attorney. She shifted her focus to healthcare and now works in compliance for Optum. She was treated for Hodgkin’s Lymphoma around the same time that Kay (in the photo at left) was being treated for acute myeloid leukemia. Russell has been in remission since October 2017, and Kay was able to return to her studies at IU McKinney in Fall 2019. Both wanted to put their healthcare experiences with the surprise medical bills they had to deal with in addition to their illnesses, and their legal training, to use for a good cause.

Even the most cautious of patients may be hit with a surprise medical bill. It most often happens when people must go to the emergency room. Emergency room patients have no control when they are treated by a physician or other medical provider who is out of their insurance network. Legislation is currently pending at the federal level, which is why Russell and Kay wanted to talk with their federal representatives. Both are hoping to generate interest in legislation at the state level, too.

The Leukemia and Lymphoma Society (LLS) was an invaluable resource for Russell and Kay as they coped with their illnesses.

Russell went through LLS to find a clinical trial when she relapsed after responding well to her initial treatment. She found out she had Hodgkin’s Lymphoma in 2016, about six weeks before her wedding date. Her doctor told her to cancel both the wedding and her honeymoon. Russell kept her plans in place and began chemotherapy the day after she returned from her honeymoon. She was cancer free for eight and a half months, when the disease returned. Russell ended up in a clinical trial of immunotherapy, which is far less damaging to the body than traditional chemotherapy. “I wanted to help others,” Russell said. “And I wanted to give my suffering some meaning.” Her clinical trial took place at IU Health in Indianapolis.

Kay was at work in the Tippecanoe Prosecutor’s Office after completing her final exam for her Professional Responsibility class in July 2017 when she learned the reason for her persistent headache was acute myeloid leukemia. LLS was a tremendous source of support for her family. “They were with me the entire time I was going through treatment,” Kay said. LLS was also a source of financial support, and information about the disease and resources available. “My father called them every day,” she said.

Kay saw on Twitter that LLS had an advocacy group and thought it would be a great way to give back to an organization that had done so much for her. The group put her in touch with Russell, who took part in the work on Capitol Hill in 2019. They worked together on the organization’s 2020 efforts to encourage support on legislation that would put an end to surprise medical bills, and cap the maximum that Americans would have to pay for prescription drug costs as part of Medicare Part D. They talked with representatives from Senator Young’s office, and got to talk with Congresswoman Brooks personally for a half hour. Brooks was receptive to their stories and offered encouragement regarding the legislation. Russell has also met with State Senator J.D. Ford to discuss how to introduce healthcare reform legislation in the Indiana General Assembly. There aren’t a lot of things happening at the state level regarding healthcare currently, the two noted. “But that doesn’t mean we can’t make things happen,” Russell said. “It makes me feel empowered to do this work.”

Kay agreed. “I found it rewarding and thrilling to share my story,” she said.