I am pleased to share the following guest blog from Amy Wilhite, an ACS CAN volunteer from Marblehead, Ohio, caregiver to her a cancer survivor daughter, Taylor, and courageous advocate for access to meaningful healthcare for cancer patients and survivors. This afternoon, Amy joined Secretary of Health and Human Services Kathleen Sebelius to discuss the ACA's critical patient protections and the importance of obtaining coverage by the end of open enrollment March 31. Today's call represents just the latest effort by the Wilhite family to raise awareness about the importance of dependable and comprehensive access to care for cancer patients and survivors. The Wilhites shared Taylor's story in the report, Spending to Survive: Cancer Patients Confront Holes in the Health Care System, jointly released in 2009 by the American Cancer Society and Kaiser Family Foundation. Amy and Taylor also joined others featured in the report for a patient lobby in Washington, D.C. during the health care reform debate, sharing their personal stories and urging their lawmakers to enact legislation that would improve the health care system for families affected by cancer and other chronic diseases.
My family and I know first-hand that new protections like the ban on arbitrary limits are making a difference for families affected by cancer and other chronic diseases across this country. In 2007, my then 8-year-old daughter, Taylor, was diagnosed with acute myeloid leukemia. Taylor endured three rounds of chemotherapy, a bone marrow transplant, and at one point was taking 23 pills a day, along with many intravenous medicines. Watching your child battle for her life is terrifying. But when the hospital told us out of the blue to contact the insurance company because Taylor was about to hit her lifetime limit on coverage, it created a whole new layer of stress. For years, we had to pick and choose which doctor's appointments, tests and treatments we would put off or delay so we wouldn't exhaust Taylor's coverage. Taylor wasn't even a teenager yet, and she was on the verge of being uninsurable. Thankfully, Congress and the President heard stories like ours and passed a law that includes hundreds of provisions that protect cancer patients and survivors like Taylor, as well as others with chronic diseases. Taylor's cancer is in remission, but like a lot of patients in her position, she needs a lot of follow-up care, and will for years to come. Thanks to the ban on dollar limits on coverage, a huge weight has been lifted because I won't have to make the heartbreaking choice: to pay for the follow-up care Taylor needs to lead an active and fulfilling life, or to save our money for future health issues, for college, or one day, her wedding. The law also allows Taylor to stay on our family plan until she's 26, so she can focus on school and not worry about how to pay her medical bills. Once she's old enough to buy a health plan for herself, the ACA ensures she won't be denied coverage or charged higher premiums because she had cancer when she was 8 years old. Thanks to the ACA, any plan Taylor buys will have to cover essential benefits needed to treat and survive a disease such as cancer. The law also means I can get my annual mammogram, and others can get recommended prevention like a colonoscopy at no cost to us. Living in northern Ohio, we are no stranger to those who question the benefits of the law. But my family won't shy away when someone is misinformed or says something negative. Taylor's siblings -- even my 3-year-old -- are quick to ask, So, you don't want Taylor to have coverage? When you put it that way, most people agree she shouldn't be locked out of the health care system through no fault of her own. Some people say, We just don't want to be told what we have to do. And to that I say, We didn't want to be told what Taylor couldn't do. The ACA gives us choices we never had before choices of coverage, choices of care, and choices of giving Taylor the opportunity to lead the life she all other children deserve to have. I'm not the most outspoken person. But, I'm passionate about my family, our health and our financial security. And this law helps to protect all three. I will continue to share our story with whomever will hear it and I encourage others who are focused on their family's well-being to do the same.
The true costs of cancer are heavy, they are deep, and they are ultimately unaffordable for many, a challenge further exacerbated by this year’s COVID-19 pandemic and spotlighted by the upcoming Supreme Court case challenging the Affordable Care Act.