Making health marketplace subsidies permanent will mean the world to families like mine

Five years ago, I believed I was healthy and was working as an executive for a small digital marketing firm. Within one month, everything changed: I was diagnosed with melanoma — skin cancer — our firm was forced to downsize, and I found myself unemployed, uninsured and at the beginning of a terrifying and expensive health journey.

At that time and since then, the Affordable Care Act, or ACA, saved my life and helped secure my family’s future. Medicaid expansion in Alaska, made possible through the ACA, bridged my insurance gap until I was able to start my own small business and buy coverage through the ACA Marketplace — coverage I could still access, despite my pre-existing condition, because of protections enshrined in the ACA.

Thanks to this ACA Marketplace insurance, I received high-quality care that led to a diagnosis of my underlying condition — Hereditary Leiomyoma and Renal Cell Cancer,or HLRCC syndrome. Many live long, happy, productive lives with this disease, but it’s not inexpensive. HLRCC can cause very aggressive kidney tumors that spread quickly and uncontrollably if left unchecked. HLRCC patients have to undergo yearly blood tests and MRIs to check their kidneys. Skipping a year leaves us vulnerable to one of the most aggressive cancers out there.

Beyond the primary concern of kidney cancer, this genetic syndrome tends to cause irregular cell growth throughout the body. Since my diagnosis, I’ve had three expensive and serious surgeries to remove pre-cancerous tumors.

Still, I am lucky. I’m lucky to have coverage. I’m lucky to have awareness on how to access resources and doctors who have worked with me through my health complications. I’m lucky my two young boys, both of whom had a 50% chance to get the syndrome, tested negative.

But all of this did come at a cost. Dealing with chronic and potentially fatal illness is mentally, physically and financially stressful. While I was grateful for the marketplace insurance and could not have survived without it, my individual plan, for just myself, was $750 a month with a $6,500 deductible. Combined with nearly annual surgeries and copays, my out-of-pocket health care costs were upwards of $30,000 a year. These costs are daunting when you’re raising two small boys, running your own business, and living through a statewide economic downturn and global pandemic. Add onto this the relentless attempts by some members of Congress to eliminate the ACA, and my family’s future stood on tenuous ground.

Right now, we’re in a good place. This month, the U.S. Supreme Court ruled against a lawsuit brought by far-right attorneys general seeking to overturn the ACA, so we know that the ACA is here to stay. At the same time, President Joe Biden’s American Rescue Plan finally provided some financial assistance through new subsidies to lower the cost coverage. My $750 monthly premium was reduced to $40 a month and my $6,500 deductible was reduced to $1,500. This was a huge benefit to my family, and I know it must be the same for millions of other Americans. But this relief will expire after two years unless Congress acts to make these subsidies permanent by passing President Biden’s American Families Plan.

Absent Congressional action, my family and many others in Alaska and across the country will go back to juggling impossible medical costs and asking those difficult questions: Can my family afford the care that we need to be healthy?

Amber Lee lives in Anchorage, Alaska with her two sons, Tristan, 14, and Finnegan, 13. She is a marketing and communication consultant for businesses, nonprofit groups and political campaigns.

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