Waiting and hoping for a miracle

Kelly and me in the Green Room of the Ed Shultz Show on MSNBC.

I have hoped for miracles before. Sometimes I’ve been disappointed, like when I could do nothing for my son as I watched him get sicker and sicker.

Then there’s my friend, Kelly Cuvar, who has had a rare form of cancer for 13 years. Pretty much everything about her is a miracle. Knowing her has made me believe miracles are possible.

Kelly has never been in remission. She is from Ohio (from John Boehner’s district, of all places), but she lives in New York, where she is able to get care for her disease.

But, she says, worrying about health care has caused her more angst than her cancer. What if she loses Medicaid? What if she had to find care on her own for some reason? What if the Supreme Court overturns the Affordable Care Act and Paul Ryan gets his way on Medicaid and Medicare?

Kelly and I don’t talk as often as I would like — we tend to keep up on Facebook and via e-mails these days. She’s pretty upbeat most days. Often, she’s downright irreverent. She has a right to be.

Kelly has said time and again that dealing with our broken health care system is more difficult than dealing with cancer. In most other countries, she wouldn’t have to worry about whether she would be thrown to the curb. In most other countries, she would get care. Period, end of discussion.

In the US, however, she never knows whether the doctor she’s seeing will stop accepting Medicaid, forcing her to find another doctor who will. Her well-being depends on which way the political, and lately, judicial, winds will blow.

Every decision she makes about her life revolves around her health care. It determines whether she’ll marry (she can’t now), where she’ll live, whether she can work (she can’t) … Just about every decision most of us make without thinking, Kelly has to make with an eye to whether it will affect her health care. Worrying about her care causes her more distress than her illness, Kelly says.

Kelly and I were fellow travelers along the road to getting the Affordable Care Act passed. We met in Washington, DC, when we both went there for rallies and lobbying. I carried my picture of Mike; Kelly carried her cane. We realized very quickly that we share a similar twisted sense of humor and the guts to speak truth to power.

When the ACA passed, Kelly and I were on the phone to each other, laughing and crying.

Sure, the law didn’t give us everything we wanted, but it was a start and we vowed to continue working to improve the system. We had won a battle, but there would be more and we knew it then. We would work for a public option, for the ability to buy into Medicare. Someday, insurance companies will have competition and people will be able to gain access to the care they need.

We didn’t believe we might have to start from scratch, though, and if the Supreme Court overturns the law, we’re back to Square One.

Kelly has cancer and I’ll turn 60 later this year. Neither of us has unlimited time. But neither of us is willing to give up, either.

No matter what the Supreme Court decides, Kelly and I will keep advocating for access to quality care for all Americans. Getting sick shouldn’t mean having to choose between bankruptcy and death.

If the ACA is upheld, Kelly will be able to buy insurance in 2014, as will others who have had cancer, diabetes, high blood pressure, depression, acne … all the things the free market has used to deny insurance coverage to people. We will be able to go to the doctor with the assurance that our needs will be met.

Some 20 million people will remain uninsured, however, and Kelly and I will continue to fight for improvements to the system. We may get tired because she’s sick and I’m old, but we won’t quit. I assure you, we’re in this for the whole race.

It may take a miracle, but Kelly and I have seen miracles; we believe in them.

 

 

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