March 19, 2010

When is ‘Life or Death’ Not a Cliché?

Sometimes the phrase “life or death” is not a cliché. Even more surprising than the words “you have cancer” were the words from the secretary when I tried to make a appointment for a second opinion: “You have no insurance.”

I left my job three weeks prior to my diagnosis to transition to a new workplace. COBRA would have carried my insurance through, but my former employer apparently forgot to submit the paperwork. I was 27, had a sudden pre-existing condition, and no health coverage. The government, insurance companies, my former employer – none of them were willing to pick up the tab for my cancer care.

I needed an operation to remove my thyroid and 30 tumors that were laced throughout my neck and shoulder. There were no healing candle lit baths, no journaling, no “you can fight this cancer” phone calls with friends, and no doctors visits during my first month of cancer. Instead I spent 40 hours a week on the phone with the national COBRAServe headquarters. When the phones were closed I spent my time strategizing back up plans. (Would I be able to fly to another country for care?)

I was raised in an extremely patriotic family of both democrats and republicans. The common theme was not about political parties, but about our love for a great country. But, when did this country go so wrong that I might actually die because nobody would cover me, a hardworking 20-something cancer patient?

I lied my butt off to the government and finally obtained insurance that allowed me to receive surgery. (I don’t recommend this to anyone. It was a horrible being wheeled into surgery knowing that my house of insurance cards could tumble at any minute.) Nine years later I am still living with thyroid cancer. I have had scans, more surgery and radioactive iodine treatments. I have likely spent more time on the phone arguing for coverage and fighting for insurance to pay my claims than I have spent in doctors’ offices.

Nothing has felt so important to me as the House of Representatives passing the healthcare reform bill on Sunday. But I’m not interested in fighting with teabaggers, nor in trying to prove the benefits of healthcare reform to people who don’t already see why it’s so necessary. Instead, I am writing this post to the majority of Americans, people who know health insurance reform is worth ten minutes of your time today and on Saturday. Put down your iPhone apps, your facebooking, your twittering, your blogging, and pick up the phone and call, call, call your congress person. Use this link to find the phone number of your representative and politely reiterate to them how important healthcare reform is and they should vote yes. I know our country can do better than where we are right now. I’m counting on you.


Please leave a comment letting me know you have called your congress person today and will do it again tomorrow! Please forward this post to others.

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Comment(s)

  1. Lori Hope Says:
    March 19th, 2010 at 5:14 PM

    Kairol, I just love you. Your heart, mind, soul. Your writing, of course. Your honesty (except that one time you lied about having insurance, ;-) – but as you say, it was life or death.)
    Thank you for making us all better people.
    Lori


  2. Pat Steer (Gaelen) Says:
    March 19th, 2010 at 9:18 PM

    I called. I will call tomorrow, too. Maybe even on Sunday. I spent Wednesday in D.C. lobbying, meeting with my senators and congressman’s health care aides and liaisons (who like secretaries, truly run the backstage world of the House and the Senate).

    The oldest non-congressperson I saw on Wednesday was *maybe* 30. My rep is a junior congressman, barely a year into his first term, considered a swing vote and pivotal and he’s been lobbied hard. Wednesday was the day after he publicly declared he’d be voting Yes. On Tuesday, his staff had to shut off the office phones after receiving over 600 calls in one hour – most from out of district, most critical of his choice. So much pressure on office staffers who are, mainly, young adults. So much power in their hands – but so much sacrifice to be part of this messy process of governance. I was glad I could tell them, in person, that I respected their efforts and how important their bosses’ Yes votes would be for real survivors, for real people (who, yes, vote.)

    So today, I didn’t just call to say ‘please vote yes.’
    For those who have declared (I called representatives in surrounding districts, too) and whose declaration is ‘yes,’ I called to say simply, thank you for moving this country forward.
    For everyone who calls to ask for a Yes, please call next week to say thanks, too.

    I hope with all my heart that Maira, Deidra, Alex, Kim and all of the other HLAs who have been overbooked and overrun this week get a chance, after Sunday, to get some rest. ‘Cause herculean as the effort will be to get to Sunday, it is only the first part of the storm.


  3. Joel Says:
    March 19th, 2010 at 10:38 PM

    I entirely agree, Kairol. As the spouse of a young adult cancer patient, I share your belief that getting health care reform passed is THE issue that we should all be focused on right now.

    Below are the names and D.C. phone numbers of key undecided members of Congress. Everyone should call their own Congressperson and each of these folks to urge them to vote yes on health care reform. Our Representatives have been getting flooded with industry-backed robo-calls and it would be good for them to hear from a wave of pro-reform folks, even if you do not live in their districts.

    Zack Space – Ohio (Zanesville, Dover, Chillicothe) – (202) 225-6265

    Marcy Kaptur – Ohio (Toledo) – (202) 225-4146

    Bill Foster – Illinois (Batavia, Dixon, Geneseo) – (202) 225-2976

    Kathy Dahlkemper – Pennsylvania (Erie) – (202) 225-5406

    Chris Carney – Pennsylvania (Clarks Summit, Shamokin, Williamsport) – (202) 225-3731

    Melissa Bean – Illinois (Schaumburg) – (202) 225-3711

    Steve Driehaus – Ohio (Cincinnati) – (202) 225-2216

    Jim Matheson – Utah (South Salt Lake, St. George, Price) – (202) 225-3011

    Stephen Lynch – Massachusetts (Brockton, Boston) – 202-225-8273

    Peter DeFazio – Oregon (Eugene, Roseburg, Coos Bay) – 202.225.6416

    Michael Arcuri – New York (Utica, Auburn, Cortland) – (202)225-3665

    Rick Boucher – Virginia (Abingdon, Pulaski, Big Stone Gap) – 202-225-3861

    Henry Cuellar – Texas (San Antonia, Laredo, Rio Grande City) – 202-225-1640

    John Tanner – Tennessee (Union City, Jackson, Millington) – 202-225-4714

    Glenn Nye – Virginia (Virginia Beach, Accomac) – (202) 225-4215

    Brian Baird – Washington (Vancouver, Olympia) – (202) 225-3536

    Dan Lipinski – Illinois (LaGrange, Oak Lawn, Chicago’s southwest side) – (202) 225 – 5701

    Joe Donnelly – Indiana (South Bend, LaPorte, Michigan City, Kokomo) – (202) 225-3915

    Marion Barry – Arkansas (Jonesboro, Cabot, Mountain Home) – (202) 225-4076

    Harry Teague – New Mexico (Hobbs, Las Cruces, Socorro, Los Lunas, Roswell) – (202) 225-2365

    Jerry Costello – Illinois (Carbondale, Belleville, E. St. Louis, Granite City, Chester) – (202) 225-5661

    John Barrow – Georgia (Savannah, Augusta, Vidalia, Milledgeville, Sandersville) – (202) 225-2823

    Nick Rahall – West Virginia (Beckley, Bluefield, Huntington, Logan) – (202) 225-3452

    Solomon Ortiz – Texas (Corpus Christi, Brownsville) – (202) 225-7742


  4. Kairol Rosenthal Says:
    March 19th, 2010 at 11:38 PM

    Joel, this call list is fantastic. I know what I’ll be doing tomorrow. Pat – thanks for going to the Capitol and doing the work that really, really matters!


  5. Steph Lawton Says:
    March 20th, 2010 at 6:25 AM

    Great list. I got diagnosed with thyroid cancer not that long before I turned 29 and got kicked off the COBRA of my mom’s great insurance I had used every single day of. A month before my birthday my boyfriend of two years, with whom I’d planned to register as a domestic partner to get on his health insurance, got overwhelmed by the whole thing and dumped me (also means I have nowhere to live in a few days… we were moving together too). I’m HIPAA eligible and I’m spending all of my time trying to get insurance in place and make sure I disclose everything I need to so I never ever give anyone an excuse to drop me, because I won’t be able to get group coverage for a long time at this point, and I am not insurable unless a company is forced by law to do so. I’m completely lost and overwhelmed and I just found out that before my mother died she was trying to get a few thousand dollars of dental work reimbursed. Wish I’d found that envelope two years ago. Kairol, your book is one of the three that I wish someone had handed me the day I got diagnosed (and will give anyone I know who is unlucky enough to join the club). I found out about my cancer in almost the exact same way you did, except I had gone in to get allergy testing done.


  6. Ed Arabas Says:
    March 20th, 2010 at 9:39 AM

    I just called Oregon Congressman Kurt Schrader’s office (published in this morning’s local paper as undecided, along with Rep DeFazio). The woman I spoke with was most pleasant, though I expect by the end of the day she will be very tired. I referenced my personal experience with cancer, and tied to the many people in his district (even with Oregon’s generous supplemental health insurance) that would be unable to afford standard-of-care cancer treatment.

    Thank you, Kairol, for pushing me to do the right thing.


  7. Kairol Rosenthal Says:
    March 20th, 2010 at 9:44 AM

    Ed – Thanks so much for making your phone call! These calls do make a difference. I’m also excited to see that Joel’s list posted above has made it to the homepage of many, many healthcare reform blogs – it’s hot stuff and tons of people are responding! I’m off to the far out suburbs of Chicago to a rally outside of Congress woman Bean’s office! These next 24 hours are exciting and hard ones. Thank you all for continuing to fuel my fire!

    kairol


  8. Robyn Grossman Says:
    March 20th, 2010 at 10:46 AM

    Even with Cobra, there are treatments and diagnostic tools not covered. The copays alone are extraordinary, especially when you’re not working in order to unergo treatments.


  9. Jody Schoger Says:
    March 20th, 2010 at 12:28 PM

    Kairol,
    I called Congressman Kevin Brady’s office yesterday. It was unfortunately and unintentionally hilarious.

    “You’re FOR health care reform,” the aide said, like, LADY ARE YOU CRAZY?” so I chatted on with him awhile.

    Eye opening. I can only do this when I’m in a good mood and my humor quotient is high. Otherwise I’d dissolve in a bucket of tears or start babbling.

    Keep up the good fight. We’ll do the same,

    Jody


  10. Karen Says:
    March 20th, 2010 at 12:38 PM

    Kairol, thanks so much for your post today. So many of us are hoping that the Health Care Reform bill passes and provides some much needed peace of mind to so many people who need care.

    I was diagnosed with rectal cancer in August 2009 on my last day at a job I’d been at for over 9 years. I’m currently paying $500 a month for COBRA, but because I live in Massachusetts, where we have access to affordable (and subsidized) health care and no pre-existing condition exclusions, I can now apply for subsidized insurance. I’m unemployed, so I’ll likely get my coverage for free with nearly no co-pays for doctor visits and medicines. And it would be pretty much the same plan (and the same insurance company) that I have now for $500 a month.

    I’d like to see everyone have access to this type of health insurance system. If I lived in any other state, I’d likely be going without health insurance when my COBRA runs out – I simply wouldn’t be able to afford the astronomical premiums that an insurance company would require because of my cancer diagnosis. That’s such a scary thought but I know that this is a reality for many people. One of my sister’s friends is 43 and has a rare and incurable cancer. She’s a single mom and does not have health insurance for herself. In honor of her, and everyone in the same situation, I made the call.

    I just picked up the phone and called Rep. Bill Delahunt’s office in DC. I spoke to a lovely woman who said that Rep. Delahunt is likely going to vote in favor of the bill, although he hadn’t made a final decision. She also told me that nearly everyone in Delahunt’s office supports this bill. I told her my story – 46yo unemployed, hefty COBRA payments and cancer – and she said “on behalf of everyone in Rep. Delahunt’s office, we wish you a full recovery.” She also said that she would inform Rep. Delahunt of my call. I also told her the story of my sister’s friend. These are the stories that need to be told.

    I’m an example of how this type of health insurance system is actually helping someone and that it can work. My sister’s friend is an example of all the people who are going without and who desperately need access to affordable care.

    Thank you again Kairol for bringing this to the front page today.

    Karen


  11. Ben Says:
    March 20th, 2010 at 3:48 PM

    Kairol,

    Your story just breaks my heart. Stage 4 Esophageal, here. I was “lucky” in that I had a pretty good idea what was going on before I was diagnosed. So, I gave away everything I owned, moved into the local homeless shelter, and then took a cab to the E.R. and got diagnosed there. I lived in that shelter for over a year while I went through chemo and rads. Until then, I had been working 60-80-hour weeks since about 1983. All by best towards your recovery.


  12. Jaime Says:
    March 20th, 2010 at 10:11 PM

    Kairol,
    I do love your writing, and I agree that healthcare reform is much needed in this country. However, I don’t like THIS healthcare reform bill being proposed. Step in the right direction? For some people, maybe. But I think it’s important to mention, like you mentioned in your writing about how you were raised in a family of both democrats and republicans and more importantly, a love for our country, to remember that even those of us against this health care bill still want reform. It’s not that we love the existing health care system; we’re just not sure this is the way to go. Too often one group is pitted against the other, instead of coming to a moderate position……


  13. Rebecca MacKenzie Says:
    March 20th, 2010 at 10:12 PM

    I have been behind the scenes doing my part!!! Thank you, Kairol for knowing the logical way to approach this. And thank you, Joel for being so proactive and posting such a great list!!

    We’re almost there, guys!!

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