Advocate Spotlight: Health Reform

Diagnosed at age 3 with Myelodysplastic Syndrome (MDS), a form of leukemia that is incredibly rare in children, Madeline and Hannah Ritter are now 11 years old. With the help of their mom, these girls are becoming outspoken young advocates for childhood cancer and the importance of health care reform.

Their Story

The prematurely-born twins were diagnosed with the rare disease after the toddler Hannah was hospitalized for a fever-induced seizure. The twins had experienced health problems since birth but doctors had no reason to suspect MDS -- according to the Mayo Clinic, most people diagnosed with the disease are in their 70s or 80s. The girls were treated with chemotherapy and radiation therapy, along with a life-saving stem cell transplant from an anonymous donor in Germany.

Today, the Pennsylvania sixth graders are cancer-free and healthy, despite some lingering late effects from their treatment, which requires them to receive growth-hormone injections and some extra help in school. 

Health Care Battles

The Ritter family knew going into treatment that they would hit their insurance cap before treatment ended, particularly considering the high cost of a stem cell transplant. Fortunately for their family, a state program in Pennsylvania served as a secondary insurance and covered the rest of the treatment needs for the girls. The state program helped pay for follow-up appointments, transfusions, I.V. nutrition, anti-rejection medicines, and more. Meanwhile, as mom Stacie says, "we still had to pay for insurance for the rest of our family, which included our son, baby daughter, husband, and myself." Their monthly insurance bill was over $800 a month, which forced the family to file bankruptcy. 

The financial effects of the health insurance burden were felt beyond the confines of the Ritter family:  the employer of the twins' father Benjamin - who provides the family's primary insurance - was unable to re-sign the same insurance the following year because the Ritters had cost the insurance company too much money during the girls' treatment. The employer was forced to find a new insurance plan, which cost more and covered less -- not just for the Ritters but also for all of Benjamin's coworkers. Stacie says, "Everyone employed at this company is being punished with higher costs and less coverage because my kids got cancer."

Stacie and Benjamin are unable to afford the co-pays for the therapy recommended by the twins' doctors, and the insurance company has been denying coverage for the growth hormone therapy the girls need to physically catch up with their peers. "This is where insurance bureaucrats come between doctor and patient," says a frustrated Stacie. She adds: "I went through the proper steps for appeal and even contacted an attorney. The laws in place now clearly protect the insurance companies. And they will continue to protect them until we insist enough is enough!"

Taking Action

Stacie Ritter is an outspoken and passionate advocate for kids with cancer and their families. She speaks to the media, to Congress, to patient advocacy groups -- to anyone who will listen. She knows that she is fortunate to have healthy children today, despite the ongoing insurance battles, and she wants to help other families who face the same questions and fears. Recently, Stacie continued being a champion for families in need by helping to lead a health reform rally at City Hall in Philadelphia.

Now that her girls are preteens and are able to tell their story themselves, they're joining with their mom in her advocacy efforts. This summer, Stacie, Madeline, and Hannah traveled to Capitol Hill to tell their story to Members of Congress as part of an advocacy effort designed to increase research funding for childhood cancers.

The CCCA Comprehensive Principles of Health Care Reform reflect our recognition of the battles families like the Ritters face every day. You can be an advocate for health care reform by sharing Madeline and Hannah's story with your family and friends: