Real story #3: Too expensive to stay alive?
Part three of our four-part Real Stories series; read more in our 2017 community report
When Amber Lee was diagnosed last fall with a very rare genetic condition that can lead to aggressive kidney cancer, one of her first thoughts was if she would have insurance coverage to help cover the cost of care.
“It’s not a cheap disease to have. Without insurance, it would be impossible to manage,” says Amber, who must get MRIs of her kidneys regularly to monitor for cancerous growths that could quickly spread if not caught early. Currently, the Affordable Care Act (ACA) ensures that Amber can’t be denied health insurance coverage because of pre-existing conditions like this.
Amber is one of many Alaskans who would be profoundly impacted by the repeal of the ACA. She’s also one of many Alaskans speaking up to protect the ACA through Protect Our Care Alaska, a coalition of individuals, organizations and businesses.
“People and groups came together to protect the Affordable Care Act from repeal. It is still being threatened constantly,” Amber says. “The issue impacts everyone, and we are aligned with how important it is to get Congress to do the right thing.”
“Health care is a critical tool to help prevent child abuse and neglect,” explains Trevor Storrs, ACT’s executive director. “Health care reduces stress on our most vulnerable families who are already struggling due to poverty, and inability to access services. Health care gives parents access to services to address their own trauma, provides preventive services, ensures children remain healthy physically and mentally, and minimizes the fiscal stress and impact on the family.”
For Amber, the importance of protecting the ACA goes beyond just her own health.
“The disease I have is genetic, so my kids could have it,” says Amber, who has two sons, ages 9 and 11. “If they are tested for the genetic condition and have it, they could be denied coverage for the rest of their lives.”
“There is already so much stress with the disease, and then on top of it, I have to worry about if I have insurance coverage and if I can pay for it. I make a decent salary, but it could get to a point where I can’t pay to care for myself. And for my kids, they could go through their entire lives without coverage. It is very stressful,” Amber shares.
“It gets to a point where you have to ask yourself, ‘Is it too expensive to keep myself alive?’”
“People talk about this like it is a political issue. But it’s about people’s lives,” Amber stresses. “Repealing the ACA means less coverage, less protection and more expense. It’s important for people to understand it.”
Amber strongly encourages other Alaskans to get involved in efforts to protect the ACA. “All these voices together send a strong message. We are not one special interest group. We are the majority of Alaska,” she says “Our voices are powerful.”