THE LONG RUN: Part 3

House and Home.

  Gym friends at a fundraiser organized for Kristin's benefit.   "Essentially, [because of cancer] I have to crowdfund my life, which is pretty insane," she says. 

Gym friends at a fundraiser organized for Kristin's benefit. "Essentially, [because of cancer] I have to crowdfund my life, which is pretty insane," she says. 

We interrupt this 5-part biography to bring you a political message.

Or is it?

Lately, the political feels intensely personal for many of us. And I can’t think of a clearer example of this than Kristin McQueen, who is waiting to see whether Congress will rob her of the health care coverage that keeps her alive.

Kristin has been living with cancer for nearly 14 years now. She also grapples with 7 other chronic conditions that, ironically, are the result of advanced treatments used to save her life.

Though she bravely steps onto the track to take part in a marathon or triathlon several times a year – each time raising thousands of dollars for the American Cancer Society – Kristin is powerless to pay for the medical care she needs without the insurance she can barely afford.

Bitten by COBRA premiums.

Even before she considers the impact of Trumpcare – which would make her virtually uninsurable – Kristin says it’s a struggle to get adequate medical coverage.

For her, the core issue is not being able to work full-time as a physical therapist, a career she prepared for with determination and hope.

In the last year, she’s only been able to work a few hours. Unexplained weight loss, severe insomnia and the pain of trigeminal neuralgia have robbed her of the stamina, upper-body strength and balance it takes to work with patients.

“I’ve undergone 6 surgeries in the past 14 months, each with long periods of recovery, so that’s a factor too,” she says.

For every paycheck that doesn’t show up, there’s a pile of bills that must somehow be paid. Student loans that accrued while she earned her doctorate of physical therapy. Rent. Utilities. And her mammoth insurance premiums.

Kristin’s employer has helped her maintain coverage through COBRA, a federal health insurance program designed for those whose employment status changes.

Employees covered under COBRA must not only pay their personal share of insurance costs, but also the share their employers previously paid. The total tab is often stunningly expensive.

“When I switched to COBRA last January, my coverage stayed the same but my premiums quintupled,” Kristin confirms. “The copays add up fast. It’s $50 every time I see the doc, which is typically 2 to 3 times a week. If I need to visit the emergency room for pain control, it’s $250 just to start.”

Coverage for care received – even when pre-approved – is also not guaranteed, as Kristin has discovered over and over again. A recent trip to the Mayo Clinic left her with a $7,000 tab for a PET scan the insurance company now says was not medically necessary, even though it was an integral part of the specialists’ efforts to find out why Kristin can’t sleep or maintain a healthy weight.

  Kristin's mom, Diane McQueen, helps her deal with dozens of doctors, hospitals and clinics and wrangles with insurers when claims don't get paid. "It's like a stressful, part-time job she does on top of her full-time job," Kristin says. 

Kristin's mom, Diane McQueen, helps her deal with dozens of doctors, hospitals and clinics and wrangles with insurers when claims don't get paid. "It's like a stressful, part-time job she does on top of her full-time job," Kristin says. 

When cancer becomes a financial death sentence.

People often ask Kristin how she manages without a steady income. “Essentially, I have to crowdfund my life,” she says, “which is pretty insane.”

Friends and family launched a GoFundMe campaign that has brought in $35,000 over the last 2 years. It’s a godsend, Kristin acknowledges – and she’s humbled by the generosity that hundreds of donors have shown her. “I don’t know what I’d do without their kindness.”

Still, as her medical expenses continue to climb, she’s draining her savings account just to stay afloat.

“So imagine how I feel, watching Congress in effect say that people like me have no right to health care at all.”

In some ways, it feels like déjà vu. She recalls a statement made by senior leaders of the American Cancer Society in 2009, when legislation leading to the Affordable Care Act was in play.

“They pointed out that a cure no one can afford is like having no cure at all,” she says. “That’s a truth I find even more painful to think about right now.

“Is the advanced medicine that saved my life, and the lives of millions of others just like me, going to be reserved for the lucky few who happen to have coverage at the moment they’re diagnosed?

“What about the 15 million of us living with cancer right now? How do President Trump and our legislators expect us to pay for the care we ALREADY can’t afford?”

We both fall silent as Kristin’s questions hang in the air. There are no clear answers. Only frustration, uncertainty and the realization that there’s serious work ahead.

Keeping her eyes on the prize.

Kristin and her mother, Diane McQueen, who works tirelessly to help her manage medical claims, and her sister Jenny, who serves as a loving anchor in her life, are enraged by Congress’s actions. So are the friends she calls Team McQueen – a close-knit posse offering constant encouragement and support for her life as a survivor and endurance athlete.

“Don’t get me wrong here. I know the Affordable Care Act was far from perfect,” Kristin reflects. “It wasn’t simple OR affordable for lots of people! But the provision that said insurance companies could not use preexisting conditions to block people like me from getting coverage was absolutely crucial. Without a health care plan of some kind, my life does not work on any level.”

As painful as this realization might be, Kristin refuses to give in to anxiety. Her eyes are squarely focused on the goals right in front of her.

She’s close to reaching a long-dreamed-of milestone: $200,000 raised to help ACS fund the research, education and patient support that creates hope for cancer survivors worldwide. She’s signed up for several endurance events this year and hopes to hit her mark before summer’s end.

And while her main concern is helping those with cancer, she acknowledges that millions of others are feeling extreme stress as they wait to see what political leaders will do.

“Hey – if you’ve got MS, asthma, heart problems, diabetes, just about any serious condition – you’re basically screwed!” she says, letting go that gentle laugh that eases the anguish we both feel, if only for a moment.

  Receiving ACS's Heart of a Champion award in 2011  . Though a self-described introvert, Kristin gladly speaks whenever she is given the chance to advocate for cancer survivors. 

Receiving ACS's Heart of a Champion award in 2011. Though a self-described introvert, Kristin gladly speaks whenever she is given the chance to advocate for cancer survivors. 

Together, millions of chronically ill people and their allies are the force Kristin believes will come together to demand better of the U.S. Senate in the weeks ahead. She is counting on friends, family and colleagues to call their legislators and support the efforts of ACS CAN, the advocacy affiliate of the American Cancer Society, which has launched an extensive #KeepUsCovered campaign, including this online petition.

She has no choice but to believe that, working in concert, we can turn things around. In fact, her life pretty much depends on it.

Please take time to learn more about the legislation heading for the U.S. Senate right now and take action to keep Kristin and millions of others covered. And if you'd like to do something personal for Kristin, check out this offer. 

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