Dear Mr. Romney…

I try not to take politics personally, but when I hear you say that sick people can pursue care in the ER, what I hear you say is “I do not care to know the reality of the sick in the United States.” When you say that your replacement for Obamacare will cover those with preexisting conditions, you routinely fail to mention that those who have not had continuous coverage (ie. those who were not dropped from their plan due to their condition) would still be unable to get coverage.

I may have cognitive impairment, long-term chemobrain, but I’m not stupid.

Now, you did a good job here in Massachusetts with MassHealth. I have friends who are alive today solely because MassHealth got them into treatment for breast, colon, and blood cancers when they were diagnosed in their 20s or 30s. In fact, I am quite disappointed in the way that you run away from perhaps the one laudable deed you did while governor of my state.  But every day, I hear stories from friends in the young adult illness community who live in Georgia, Nebraska, Oklahoma, and others who do not have access to such resources. They struggle every day, worrying more about whether a life of poverty induced by high medical bills is worth the fight against cancer. Unfortunately, chemo, radiation, and dialysis are not administered in the ER. The ER doctor wastes hundreds of dollars of hospital money (money that you say goes toward relieving the burden of low income patients) for the most expensive oncology or nephrology referral ever – one that will likely never be followed through. Today, I looked in my significant other’s eyes and told him that depending on what happens in the election, we might never be able to leave Massachusetts. Our combined pre-exisiting conditions in our 20s would make it impossible to get health insurance in other states if Obamacare was to be repealed.

It wakes me up at night in a panic. You see, I was uninsured for many months between college graduation and getting my first, benefits-paying job. And just 4 months into that job, I woke up to lumps on my body that would send me down a journey I never anticipated to find myself on. I will never be sure why my applications for health insurance were denied in the uninsured period. It might have been my weight, my history of PCOS, or the bladder condition that resolved itself when I was a child. It doesn’t matter why I was denied coverage, what matters is that I was barred access to any form of insurance because of pre-existing conditions at 22 years old. Had I woken up with a swollen underarm just a few months earlier, I would have filed for bankruptcy before I was even 24 years old and the taxpayers would have been on the hook for hundreds of thousands of dollars of medical debt. Even if I paid $500 a month (almost a quarter of my current take home income), it would take 42 years just to pay for my treatment, absent of the follow-up care that is necessary to continue being a contributing member of society. Each round of scans costs more than a new compact car.

In America, you can be anything with hard work – I so much want to believe it. I grew up living that dream, from going to my perfect college with an almost-full tuition merit scholarship of more than my hometown’s average income, to moving across the country to work at a fulfilling but thoroughly entry-level job while planning responsibly for my future. The day I was diagnosed with cancer, I had absolutely no debt and several thousand dollars in savings. Not bad for someone who had just celebrated her 23rd birthday. 6 months of chemo, even with insurance and working full time, drained my resources completely. This August marked my first year of remission and I have not even begun to recover financially or climb out of debt. I can’t dwell on what might have been in the alternate reality where I did not find a job with benefits before my diagnosis because that is someone else’s reality, and it’s horrifying.

The moment that you are diagnosed with a serious illness in this country, you lose a significant amount of freedom – and it’s not all related to the illness.

When I began writing this blog, I hesitated in using my real name. It was important for me to be authentic in order to not only help my community understand what I was going through, but also to serve as a guide to those who find themselves on this bramble covered road in the future. On the other hand, my name offers the opportunity for  potential employers in the future to cast me off not because they are worried about my health impacting my ability to produce, but because my cancer history will raise their insurance premiums. In 2014, Obamacare will allow me to consider working in environments that might not have the stellar HMO plan my large current employer offers. I could work in a small nonprofit, a start-up, or even start my own business and create more skilled jobs: all things I cannot do today because I would lose my health insurance. If you repeal Obamacare, can you promise that I will be able to find an insurance company that will affordably cover me with a recent cancer history? Even if there is a gap in coverage?

Your healthcare proposal emphasizes higher deductible-lower premium policies. For those of us with long-term followup care or chronic conditions, we will cap out the deductible every year. That still leaves a huge gap between those who qualify for Medicaid (an already restrictive program that you plan to slash, negatively impacting not only the low-income, but the disabled and a disproportionate number of children as well) and those who can afford $6000 a year (a figure you have cited as a cap for out of pocket costs in these programs) plus premiums plus medications. I fall in that gap not because I am lazy, unambitious, or a poor worker but because I am 24 and just 2 years into my career with compensation to match.
Mitt, can you imagine how embarrassing it is to explain how my fear of poverty due to my disease is stronger than my fear of dying from it to my friends in the UK and Canada? Both countries spend significantly less on healthcare costs because of their national healthcare systems (only the Marshall Islands, one of the most remote places on Earth, spends a higher percentage of their GDP on healthcare than we do), while enjoying a higher life-expectancy. Friends in the Hodgkin’s community in these countries often had better care in their hospitals because their medical decisions were not tempered by fear of cost, fights with insurance companies, postponing or stretching out follow up visits to reduce number of copays, or general stress because of finances. You praised Israel’s low cost, highly-regulated healthcare system. Why does Israel deserve a better system than we do?

I leave you with a quote by playwright Doug Wright. While he is referring to GBLTQ rights (about which you are also firmly in the wrong), the same sentiment holds true for those of us with tenuous access to affordable health care.

“I wish my moderate Republican friends would simply be honest. They all say they’re voting for Romney because of his economic policies (tenuous and ill-formed as they are), and that they disagree with him on gay rights. Fine. Then look me in the eye, speak with a level clear voice, and say, ‘My taxes and take-home pay mean more than your fundamental civil rights, the sanctity of your marriage, your right to visit an ailing spouse in the hospital, your dignity as a citizen of this country, your healthcare, your right to inherit, the mental welfare and emotional well-being of your youth, and your very personhood.’

It’s like voting for George Wallace during the Civil Rights movements, and apologizing for his racism. You’re still complicit. You’re still perpetuating anti-gay legislation and cultural homophobia. You don’t get to walk away clean, because you say you ‘disagree’ with your candidate on these issues.”

All that the millions of people with pre-existing conditions that range from asthma to terminal cancer want is the dignity to work, produce, and live through and with our illnesses without fear of being bankrupted because we could not find insurance coverage. Your disregard for a population that you of all people should be able to empathize with due to your wife’s health struggles will not go unnoticed.

Posted in News, Politics, Rants, Survivorship
2 comments on “Dear Mr. Romney…
  1. Allie

    This is a really beautiful and moving post. Your struggling with cancer is an inspiration to me!

    I think what you are pointing out so well is that whatever our political views, we should never forget the human cost behind the policies. There are no easy answers in regard to health care, but it is clearly tragic and unacceptable for young people who are diagnosed with an illness to lose all of their savings and go through bankruptcy to getthe care they need to survive. That is clearly wrong!

    You are amazing!

  2. Jane says:

    I have a daughter that is 30 yrs. old. She is mildly mentally retarded and has been disabled since birth. She LOVES LIFE< and a family that stand's behind 110 %. She also in ESRF. She had her first transplant when she was 9 yrs. old, lived 12 WONDERFUL yrs with this GIFT. In 2003 she lost the graft and was placed on Dialysis. Her only FULL sibling donated a kidney to her in 2004, the kidney never got Blood flow so it never functioned, So she has now been 9.5 yrs on dialysis. She worked for many yrs. after high school and LOVED it, but time on dialysis has take a toll on her little body, but never her spirit !!! We have hope she will get the chance for THE GIFT OF LIFE again but with anti bodies 100% and 0+ it's a wait. My worry is as her aging Mother and her aging father, what is going to happen to her Medicare and Medicaid if Rommey is elected and if Obama remains.. I am one of those un decided voters and just worry what will happen to her if Dialysis is cut. We do her at home Pertioneal dialysis,, so stressed I am leaning towards Obama. Thanks

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