No More Scarlet Letters

13 Oct

That’s it. No more hickey, man-hick or hickster to speak of. My hickman is out. And I have two measly stitches on my chest to prove it.

Without tubes coming out of my body, I’m back to the “I wonder why she’s bald?” stage I remember seven years ago. I’ve noticed some sympathy nods on the sidewalk replaced by the “I bet she really hates her parents” or “pink hair dying gone wrong?” wonderment.

I welcome the childish problems some now assume I have. Much better than assuming I had cancer three times. People think you should have the wisdom of a 60 year-old after experience like that. But all I want to talk about is what color wig best makes a Katy Perry costume and researching the weirdest Googled terms that have led internet surfers to my blog. By the way, they are, in no particular order:

  1. Who is the redhead in the 5 hour energy commercial
  2. I’ve done a lot of crazy things in my life but i’ve never stuck my head into a hornet’s nest before
  3. Can people get hurt doing too many belly smackers
  4. Can you sue someone for making fun of a redhead
  5. What to wear to outdoor beer festival
  6. Prince Harry chest
  7. Male jean shorts
  8. Playing dodgeball with one arm
  9. When you donate something is it spelled donator or donater
  10. How do I sell an iv pole in Massachusetts
  11. Fat man with jean shorts with suspenders
  12. Redneck brother
  13. Should I tell my anesthesiologist I’m redhead
  14. Nursing home nuns
  15. How to make an independent redhead love you

I think that pretty much sums me up. But now I’m seriously skeptical of you all. Good job, Google.

Unfortunately there are too many young adults who have to deal with way more grown-up problems after cancer treatment. I think these are the scariest problems of cancer – being uninsured or underinsured. I have been fortunate to have excellent medical insurance throughout all of my treatment (not to mention a social worker mom with a knack for navigating complicated programs), but I know compared to my peers I’m the exception.

When I was in Washington DC with the American Cancer Society Cancer Action Network (ACS CAN) a few weeks ago, I met a woman my age – let’s call her Amanda – in the most stressful of straits. She had just suffered through stomach cancer. But instead of moving past a disease that had already taken some of the best years of her young-twenties life, she had to worry about the thousands of dollars of medical debt looming over her future.

Young adults often worry about student loans, car payments, or (sadly) credit card debt. But imagine having racked up hundreds of thousands of dollars in medical debt that you acquired through no fault of your own, just so you could keep living. That’s all you have to show for it – something other people get for free. No college degree, no Ford Fusion, no spring break in Cancun.

When I was in college – before the Affordable Care Act (healthcare reform) was introduced – I was acutely aware that I needed to get a job – a good job – as soon as I graduated. Sure, the salary and professional advancement would be nice, but most of all I needed health insurance. Like other childhood cancer survivors, I already had thousands of medical dollars invested in me. I knew that no health insurer would ever take me if they had anything to say about it. The only path to insurance was employment, because that’s unfortunately how our system is set up now.

I had health insurance through my Dad’s plan throughout college so long as I remained a full-time student. No screwing around. But that same health insurance dropped me the day of my graduation. I never figured out how they knew.

It was December 2008, right at the onset of the economic freefall. The job I had secured since the summer before, the job for which I had studied, interned and volunteered so hard for throughout college, backed out from under me. I didn’t even care about the money, about being unemployed. All I could think about was my health insurance. Without it, I was defenseless against cancer.

Finding a job that would offer me benefits was less a battle to put my hard-earned degrees to work before my comparatively measly student loans kicked in than a battle for my future. By this time, I had two cancer diagnoses under my belt. Would a next one occur before I could secure insurance?

Thankfully, after a three-month internship, I landed a job in Washington DC. Things worked out for me. But that’s not true for a lot of young adults.

We have a system set up to help old people with cancer – Medicare – and young people for cancer – SCHIP – but we don’t have a system set up for young, childless adults with cancer. We pour millions into paying for the lifesaving treatment of those 65+ with cancer, but for young adults – those with a whole life ahead of them – we have nothing. When you consider a measure called Potential Years of Life Lost (PYLL) for young adults, this is unconscionable.

This was the case until the Affordable Care Act (ACA) was passed. Before ACA, a young adult with cancer with no private health insurance had few options. Most couldn’t get Medicaid, the government health insurance program for the really poor, because they didn’t meet two of the qualifying requirements.  You see, under the pre-ACA rules of Medicaid, you had to be really poor (income at 133% of the federal poverty level – that’s $14,484 a year for an individual or $29,726 for a family of four), and you had to be something else: a child, pregnant, over age 65, disabled, (if you had cancer and qualified as disabled, you were likely terminal), or have breast or cervical cancer (read here why these cancers – and only these cancers – are off the hook).

What’s missing from this group? Childless young adults.

Just out of college, Amanda was poor enough to be on Medicaid. But she didn’t have a second qualifier. She couldn’t get a job that offered health insurance, mostly because she was beginning treatment and was too sick to start working. She survived 10 months of chemotherapy, but today is shackled not only with tremendous medical debt, but also the scarlet letter of a pre-existing condition.

This is why ACA is a godsend for young cancer patients like Amanda and me, and why many laudable groups like ACS CAN support it too. It will keep what happened to Amanda from happening to others thanks to a few very important provisions:

  1. It allows anyone whose income is 133% of the federal poverty level to qualify for Medicaid. They don’t need two qualifiers to be on it. Unfortunately not all states opted into these new eligibility rules.
  2. It allows children to stay on their parents’ health plans until age 26.
  3. It restricts health insurers from denying me coverage because I have a “pre-existing” condition. (Note: This is made possible only through the “individual mandate.” Allowing all people with pre-existing conditions to have healthcare is only possible if everyone – including healthy people – have healthcare, too.)

If these first two provisions were true a few years ago, Amanda could put cancer treatment behind her and contribute to my Katy Perry wig poll, or perhaps spend hours daydreaming of a ridiculous Halloween costume of her own. Instead, she has way bigger problems on her mind.

When people talk about repealing healthcare reform, they risk taking away these protections for young cancer patients like me. That’s the last thing a twenty- or thirty- something with cancer should have to worry about.

To leave a comment,just click on “Comments” below this post. It will take you to a new page. Scroll to the bottom where it says “Leave a Reply.” Fill in your name, email address, and your comment in the boxes. When you’re finished, click “Post Comment.” It’s great to hear from you. 

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15 Responses to “No More Scarlet Letters”

  1. erika October 13, 2011 at 2:28 pm #

    amen, SISTER!
    I’m posting this to COLONTOWN!!!

  2. Tracy October 13, 2011 at 2:37 pm #

    Excellent post, Jenna. I’m thinking of you! This reminded me of the sad (but all too common in many ways) story of a woman who was a couple years behind me in high school…http://www.womenspress.com/main.asp?SectionID=1&SubSectionID=1&ArticleID=3394

    – Tracy

    • Jenna Langer October 13, 2011 at 6:12 pm #

      Thanks for sharing that, Tracy. They’re totally right that gov’t agencies that deal with healthcare issues are entirely understaffed and underfunded. Hopefully things will change.

  3. kimlopark October 13, 2011 at 2:42 pm #

    This is an amazing post! At first I thought, is this about me? I was at the ACSCAN lobby day and I met you in the elevator when they has a mixup with your room. I then sat in the 1st breakout session about the affordable care act 201 and I believe I saw you in there as well. Im 21 years old in remission from stomach cancer, just graduated from college, denied medicaid, uninsured, thousands of dollars in debt. Am I Amanda? Trying to find a job right now in on my bucket list. I have been unable to see my oncologist and GI doctor becuase I dont have insurance and finding a full time job that offers affordable insurance is what I’m oh so desperate for. I would love to connect with you more.

    • kimlopark October 13, 2011 at 2:44 pm #

      sorry…I forgot to finish. I never was able to relate to someone my age who was going through similar things as me.

      • Jenna Langer October 13, 2011 at 6:13 pm #

        Ha! You are totally Amanda! How did you find me? You really made an impression on me during that first breakout session. Would love to connect more too.

        • kimlopark October 13, 2011 at 7:16 pm #

          ACS CAN Virginia posted this on their facebook page today and once I clicked on it and read your about me I remembered seeing you. I will add you on facebook.

  4. Valerie Kolm October 13, 2011 at 3:08 pm #

    Oh girl this is so close to home! I am a college student, but an older one and was diagnosed with colon cancer at age 26 in my senior year. I couldn’t afford insurance to begin with and so I had none while going through the whole ordeal. I am so thankful for the American Care Act. I didn’t do anything to get cancer and don’t deserve to be punished for it! But the insurance companies still want to charge me like 850 to 1000 dollars a month which isn’t exactly allowing me to have insurance anyways.

    • Jenna Langer October 13, 2011 at 6:14 pm #

      I can’t imagine. I wish ACA would have come sooner for you. Thanks for your comment!

  5. LK October 13, 2011 at 3:19 pm #

    Well said, Jenna. I hope this post reaches many, many people.

  6. Sara Martin October 13, 2011 at 9:06 pm #

    Another thoughtful and well written post, my friend. While I’m am not a cancer survivor, I have experienced pre-existing condition concerns. It’s scary, and horrible, and no one — no matter what his/her age or condition — should have to worry about that. As a nation I hope we can fix these problems. Young people deserve so much more from this country. And I think you will help to make that happen. You go, Jenna!

  7. Dick Embacher October 13, 2011 at 9:21 pm #

    Wild Thing, you make my heart sing! God bless you Jenna Langer. You totally get it. You can advocate for people better than most anyone I know. You are a survivor. You are bright and articulate. You care about others. I truly hope you will run for public office one day, when it makes sense for you.
    Your writings inspire. Thanks

  8. Kat October 15, 2011 at 10:04 am #

    Thank you for educating me about the aca. I never considered this point of view and I appreciate learning about an issue that affects people my age!

  9. Chris October 15, 2011 at 2:06 pm #

    I don’t have cancer, but I do have a preexisting medical condition. I have a rare nerve disease that leaves me in constant pain- a form of neuropathy, with no treatment, no cure, which I got when I was 18. I was fortunate to be a student and able to stay on my parents insurance, but then had to go on the major risk (super expensive cobra) I was able to keep insurance, but WOW, the medical bills for anything that requires specialists, scans, tests, procedures (One day of testing was over $25,000 in bills) and I sympathize–I was so happy to have health care reform signed–now I’m married and happily on my husband’s insurance, because my job doesn’t offer insurance, and I’m still unable to work full time in a position that would offer insurance, realistically I probably never will be since there is no cure. What it boils down to is absolutely young adults who don’t fall into the qualifiers NEED to have access to insurance for many, many reasons. And I, with my RSD stand firmly behind ACA. Keep advocating for all of us who are childless young adults, please Jenna.
    All the best,
    Chris

Trackbacks/Pingbacks

  1. Good Riddance and Happy New Year « The Redhead Report - January 1, 2012

    […] list of committed donors, one of whom would donate to me when she was only 19. I had great health insurance, an accommodating employer, a cozy home in which to recover. My hair is now reddening and […]

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