Round-the-Clock Infusions Don’t Keep Patient Advocate from Raising Awareness
Bettemarie is a young woman living outside of Philadelphia who is passionate about driving change. From helping three to five year-olds as a pediatric occupational therapist to coaching gymnastics and volunteer work, she has a history of putting her talents to work for others.
Today, Bettemarie focuses much of her energy on advocacy to raise awareness of gastrointestinal disorders, the understanding of people living with conditions similar to hers and the importance of having access to home infusion care. She says, “My life depends on being connected to an IV 24 hours a day, seven days a week, for life-sustaining infusions. The ability to infuse at home and travel with my IV, rather than being stuck in a hospital or nursing home, means I have greater independence. It’s allowed me to go to college, work as an occupational therapist and buy my own house.”
Bettemarie was diagnosed with Mitochondrial disorder and Dysautonomia. These conditions affect the body’s cell and organ function, as well as automatic tasks, such as regulating blood pressure, breathing, digestion and body temperature. For more than 25 years, Bettemarie has relied on continuous infusions of parenteral nutrition (PN), saline and pain medication to help manage the effects of her conditions.
PN is an intravenous (IV) nutrition therapy which may include a balance of protein, carbohydrates, lipids (fats), electrolytes, vitamins and trace elements for patients who cannot ingest food orally or enterally (tube-fed) to meet all their nutritional needs. Baxter offers a broad PN product portfolio and also offers automated compounding systems for pharmacists to prepare customized PN solutions.
Hearing others’ stories is why I advocate. I want to improve the lives of those who require home infusion therapy. Change takes a village but we can make change happen if we work together.
Bettemarie, parenteral nutrition patient
Bettemarie has brought her and others’ stories to Washington, D.C. to advocate for changes to federal law. Among her current priorities, Bettemarie has taken on the task of raising awareness on Capitol Hill that home infusions often aren’t fully covered by Medicare due to a gap in coverage between Medicare Part B and Part D. Professional services and supplies associated with home IV infusions of saline, chemotherapy, intravenous immunoglobulin (IVIG), antibiotics and certain other medications are not completely covered when infused in the home but are when provided in a medical facility.
“For someone like me who requires continuous infusions, this gap means I would be forced to move into a nursing home to receive my treatment even though I’m completely able to live in my own home otherwise,” says Bettemarie.
Fighting for her and others facing a similar situation, Bettemarie held meetings with several legislative offices to raise awareness of a pending bill – the Medicare Home Infusion Site of Care Act of 2015– that would address the gap. She also started an online petition to help government officials understand how many are affected by the issue. So far, the petition has more than 73,000 signatures.
She also raises awareness as a member of the public policy committee for the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) and has lobbied with the United Mitochondrial Disease Foundation (UMDF), Gastroparesis Patient Association for Cures and Treatment, Inc. (G-Pact) and the Oley Foundation. Bettemarie has also testified at public meetings with the U.S. Food and Drug Administration (FDA) to raise awareness of gastrointestinal disorders.