As I entered the cold, blindingly bright infusion room 20 years ago to begin chemotherapy for my stage IV cancer, I was admittedly a little scared, and shaking a bit. But I was resolute. I was ready to begin the fight of my life.
When the nurse injected me with the red liquid that looked like Kool-Aid but would give me horrible nausea and severe, flu-like symptoms throughout my six-month regimen, I gained a sense of calm.
It surprised the nurse and even me.
That inner peace came, I think, from simply knowing that the medicine would work, and that not only did my family, friends and doctors have my back, so did my country, strange as it sounds.
As the toxic liquid entered my veins, I thought to myself, “I’m blessed. Unlike so many poor people around the world, I live in a nation where folks generally have access to decent health care.”
Like so many cancer patients with whom I spoke before I started my treatment, I believed the system was set up for me to win. There was still compassion in politics, and the middle-class safety net was intact: as a self-employed journalist and author, I received health insurance through my wife’s employer. In theory, that could be taken away, but her job seemed reasonably secure — and more important, we felt that if worst came to worst, the richest country in the world wasn’t going to let me die.
Even in my darkest, most feverish cancer-induced nightmares over the last two decades, I never thought that to survive I’d be forced to fight the bad cells in my body and uncaring politicians.
But here I am. On the brink of just that.
Thanks to pols who have no apparent understanding of the needs of cancer patients I may soon be without health insurance as a result of my whopping pre-existing condition.
But the last grant for the research my wife coordinates at a major university is approaching. She’ll then seek to transition or the job will be over.
If that happens, I’ll be without health insurance for the first time since becoming a cancer patient in late 1996.
And millions of cancer patients across the nation are in this same leaky boat.
The American Health Care Act (AHCA), also known as Trumpcare, which was passed by the House to supplant Obamacare and is now being considered by the Senate, will sink us.
It will have a devastating impact on America’s cancer community.
Rep. Tim Ryan,D-Ohio, said recently that if AHCA becomes law, more than a quarter million people in his district alone who have pre-existing conditions will see higher insurance rates.
Among other things, the bill would create a mechanism in which people like me with pre-existing conditions could be charged considerably more for their coverage, and fewer health services will be covered.
As someone who’s written about both politics and health care throughout my journalism career, I know how corrupt both games can get. But I’m a relentlessly positive person. I believe that’s a big reason why I’m still alive. I was told when I was first diagnosed with cancer that I would be lucky to live three to five years.
But my optimistic nature will be seriously challenged if this bill passes. Our president as well as the conservative House Republicans are not working to protect our interests. This is not paranoia, and it is not partisan. It’s just a fact.
Rep. Mo Brooks, R-Ala., recently showed the House’s hand when he told CNN that people with cancer and other expensive conditions should “contribute more to the insurance pool” to offset the cost “to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy.”
When I was diagnosed with cancer, I was 35, a multisport athlete and a nonsmoker who had a very healthy diet and lifestyle.
Here in San Diego County, Rep. Darrell Issa was a key vote in the effort to pass AHCA. When a reporter asked him before the vote what was his position on the bill, he said it was “none of your business.”
That’s the attitude we have to overcome. Trump insists those with pre-existing conditions don’t have to worry about having our coverage cut or become prohibitively expensive.
But that’s just not true.
Here’s what could really happen to literally tens of millions of cancer patients if this health care bill passes and makes it to Trump’s desk.
Among other things, this bill gives states the freedom to deny insurance to anyone with a pre-existing condition by putting us into so-called high-risk pools, which are the equivalent of swimming with sharks.
Thanks to the MacArthur Amendment, insurers would be allowed to increase premiums for people with pre-existing conditions as they become part of a high-risk pool.
People thrown into these pools could see their premiums go up by tens of thousands of dollars a year, up to $142,650 a year, according to the Center for American Progress, a liberal advocacy group.
This practice, which punishes those of us who are sick or have been sick and rewards those who are healthy, is currently disallowed by the Affordable Care Act.
“Allowing patients to be charged more for coverage based on their health status risks making pre-existing condition protections virtually meaningless,” Chris Hansen, president of the American Cancer Society Cancer Action Network (ACS CAN), said in a statement the day the bill was passed.
Hansen noted that while current law needs improvement, “focusing on lower premiums for healthy people at the expense of the millions of Americans with pre-existing health conditions, including more than 16 million cancer survivors, is wrong.”
He added that the bill enables payers to pick and choose their customers and leave patients with serious conditions like cancer with few if any affordable insurance options.
“High-risk pools have not historically been an adequate safety net,” Hansen said. “These programs have been unsustainable and underfunded.”
So I’ve got all this to look forward to if the bill makes it to the Oval Office, where Trump is likely to sign a law that in its current form is a disaster for cancer patients and millions of other Americans who are not healthy, young or rich.
Like so many Americans, I briefly was won over by Trump’s rogue, no-bull style of politicking, until I sensed that his actions were betraying his egalitarian rhetoric.
Anyone who still believes that our president is a man of the people should study what this bill does.
And then you should take another look at the glee with which Trump and the congressional cronies celebrated its passage in the House.
My guess is that like me, millions of cancer patients and survivors slept a little less soundly that night, and have ever since.
Even the moderate Republicans in the Senate who say this bill needs to be thrown out and re-done aren’t enough to assuage my fears. It’s still anyone’s guess what this legislation will look like if and when it makes its way to Trump’s desk.
Will Washington ultimately do what’s right? The prospect of that outcome remains wobbly.
Meanwhile, my reality remains: There are cancerous lymph nodes in my abdomen. They’ve been there for several years and they’re not growing, so for now my doctor and I have agreed not do any treatment.
The not-so-good news is that I’m dealing with chronic, massive physical pain — and have been for 15 years. That pain is exacerbated by the uncertainty over the future of health care and whether I will be able to get insurance.
If I can’t, my fate is anyone’s guess.
Jamie Reno is an author, journalist and global cancer-patient advocate living in San Diego.
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