Lew Barnes, 62, eases back into the wicker chair, sipping coffee in the frigid morning wind, and informs me matter-of-factly about how the new government will soon be leaving him to die.
Barnes, a surfboard maker and former businessman from Crescent Beach, is now in the fifteenth year of his bout with Leukemia. When he was first diagnosed back in 2002, doctors generously estimated that he had ten years to live; but thanks to four rounds of chemotherapy, he is still alive and well, talking to me here today beneath the oaks at Harry’s Café.
This, however, is by no means the end of his struggle with cancer. Surviving the disease has come at a costly price: paying for such expensive treatments meant losing $700,000 over ten years- nearly his entire net worth- draining both his bank account and his day-to-day energy.
Barnes has borne the full brunt of America’s convoluted health care system, his insurance company having abandoned him immediately after his first treatment. “I was no longer a profitable customer to them,” he says. “I didn’t even know they could do that.”
The next two sets of chemo, alas, had to paid for out of his own pocket.
When he received his fourth round in 2012- a new treatment that utilized pills instead of an IV – the Affordable Care Act, instated by Obama in 2010, covered the hefty medical bills when he was incapable of doing so himself. In his words, it was a “breath of fresh air.”
But now that Congress is hell-bent on dismantling the ACA- widely known as Obamacare- Barnes faces the possibility of losing the federal support that he will need for the next bout of chemo- that will keep him alive, in essence.
“They’re trying to completely throw out the system without creating a solution for people like me,” he laments. “They’re trying to save a few bucks at the expense of people like me.”
After a years-long political siege, November’s election of a majority of Republicans to the House and Senate has tipped the scale in the congressional battle against Obamacare.
Detractors of the program, mostly conservatives, argue that the program was inefficiently bureaucratic and that eliminating it will allow people to individually purchase their own health insurance- that its benefit to a minority of Americans, who could afford exorbitantly priced but lifesaving medical treatments, isn’t worth the damage to the majority, who were collectively forced to pay more for their health premiums.
Supporters say it gives low-income people access to lifesaving treatment that would normally be out of their price-range. Many, including Barnes, can attest that it has kept them alive in situations that would’ve likely killed them.
Against the corrosive drift of widespread public indifference, voices like Lew have been fighting to insert their stories into the national dialogue about Obamacare. Since the movement to remove the program began, Lew has become active in local politics; just recently, he gave a pained speech about his journey before a sprawling crowd at the St. Augustine branch of the National Women’s March.
“It’s not right,” he tells me. “So I’m not going to go own without a fight.”
Lew concedes that Obamacare had its flaws. “But instead of trashing the program,” he says, “fix it!”
Considering the gravity of his predicament, Lew is an astonishingly stoic man. He speaks with a relaxed optimism, and seems more interested in discussing his former exploits as a captain chartering sailboats in the Bahamas and Cuba than weeping dejectedly over the current political situation.
He doesn’t know what the future holds for him. Instead, he focuses on his immediate plans, like expanding his business building wooden surfboards. Anything past that is beyond his control, not worth worrying too much about.
Before we leave the café, I ask if he has any final reflections on his cancer, his treatment- his life, his fate.
“What happened to me could happen to anyone,” he responds, matter-of-factly as usual. “I was healthy before my diagnosis: I was a gym rat, had an active lifestyle.
“You never know what could happen.” He takes a last, tentative sip of coffee. “You never know.”