NORTH YARMOUTH — I have been seriously ill for over three years. All the appointments, hospital stays, long drives to visit specialists and excruciating procedures come with idle time – in waiting rooms, on exam tables, hooked up to machines. It’s given me time to really consider what it means to leave our world and community better for our kids. I think a lot about my son, Kasch, who suffers from a stomach disease called gastroparesis.
I’ve had time to think about these things because I am still alive. I am still alive because of Obamacare.
Myxofibrosarcoma is a rare cancer that forms in connective tissue. It attacked my elbow, then my lungs, and then my lymphatic system. I’ve compared receiving my diagnosis to a car wreck because of the way it turned my life on its head – but living with this disease has been more like a car wreck that happens over and over again every day.
To date, I’ve had nine surgeries and 55 radiation treatments. That’s impossibly expensive care to receive in our county. But because of the Affordable Care Act, there’s a chance my legacy will not be bankruptcy.
I am a small-business owner by trade, a photographer. Like 21 million other Americans, I gained access to better health care through the ACA marketplace. If the vicious attacks on our health care continue, people from all walks of life will suffer. Some may even die.
My son is an adult now, and there’s one thing I know I can still do for him: I can still fight for his right to health coverage.
I had to roll my eyes when I saw Sen. Susan Collins’ April 1 letter to Attorney General William Barr chastising the Justice Department for not defending the ACA. Barr’s announcement would not be a threat if Collins had not voted to pack the Supreme Court with justices hostile to the ACA. When Collins voted to confirm Neil Gorsuch and Brett Kavanaugh, she did so knowing that they’d likely join the other powerful individuals and corporations working to chip away at the progress we’ve made on health care.
Collins’ chastising Barr for doing exactly what she empowered him to do is, in my eyes, a cynical pre-election ploy to protect herself from the blowback for her own votes that threaten the lives of Mainers like me. It’s like throwing your child into the lion’s den and then yelling at the lion for eating him.
I’ve already been alive over three times longer than is usually expected for people with my diagnosis. I simply don’t have the time to wait for Susan Collins to keep her promise to work across party lines to improve health care for anyone – not for me, not for you and not for our children.
And still, I have hope. The recent shake-up in the U.S. House of Representatives has breathed new life into our Congress. It’s showing signs of progress and momentum on health care.
These leaders are moving the conversation from saving the ACA to further protecting the 133 million of us who have pre-existing conditions. Maybe they will reduce premiums and out-of-pocket costs for all of us. Instead of turning back the clock, they’re working to strengthen the ACA and move toward universal health care that protects everyone, whether we run a Fortune 500 company or a small business. No matter our income or where we were born, and no matter whether we’re white, black or brown, we all deserve access to health care.
I hope our Congress will hear the cries of people like me who are willing to fight for our future while fighting cancer. I want a future where someone who is sick doesn’t have to think twice about getting the care they need. And where entrepreneurs – even those with pre-existing conditions – have the the safety net necessary to take a risk and start their businesses.
On the really tough days, I think about being back in my studio – without the cancer. I dream about being able to move through my workday with my sole focus being delivering the best to my clients. I hope to see the day where I don’t have to worry about health care – not the cost, not the quality, not its future.
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