Why We Need Health Reform – My Story


Yesterday my husband and I walked in from our mail box with two medical bills we were dreading. The neurologist wanted me to have an EEG after I experienced a possible seizure.  I told him we could not afford it.  Neither he nor the hospital could tell us how much this test they do every day would cost.   I looked at my savings, checking, and projected income and realized I could pay the bill.  It leaves me with five dollars until November.

I have been a person who exercises, does not smoke, does not drink, avoids processed foods, and only utilizes health care I can pay for.  We have health insurance.  One day I went for my yearly exam and my primary care doctor found something neurologically off.  After a year and a half of expensive tests, in April I was diagnosed with Multiple Sclerosis.  Now I have no other choice of health insurance than the one I had before my diagnosis.  The out of pocket costs for my health plan doubled with the new fiscal year.  I do not qualify for Medicaid.  I just received the updated rules for my health plan and I can hardly understand them.  This makes no sense.  I worked for a health insurance company so I should be able to understand the policy.

Going into this recent recession my husband and I had no debt except our mortgage.  In 2001 he was laid off.  We lost everything and had no health insurance for two years because Cobra was too expensive.

Our income has decreased and our health insurance premiums and out of pocket costs keep increasing.

I have family members who only care about protecting their Medicare.  I hear people say health care is a matter of personal responsibility.  What if you just can not afford all the costs?  What if you have a crippling, incurable illness through no fault of your own?

Do people really think they or someone they love will not be struck with some illness they can not afford?   Are people happy with the status quo of insurance plans becoming more and more limited and premiums and out of pocket costs climbing faster than income?

No one should have to feel sick walking to the mail box to see if it contains an unaffordable medical bill. No one should have to choose between the hospital or staying home because of the cost of needed care.  No one should have to skip doses or cut up medications because the pills are too expensive.

For me, the difference between people for and against reform is not political.  It’s simply that the opponents of reform haven’t had to deal with the reality of the health system for many families like mine.


  1. Why We Need Health Reform – My Story

    October 9, 2009 at 5:48 pm

    […] News Sources wrote an interesting post today onHere’s a quick excerptYesterday my husband and I walked in from our mail box with two medical bills we were dreading. The neurologist wanted me to have an EEG after I experienced a possible seizure. I told him we could not afford it. Neither he nor the hospital could tell us how much this test they do every day would cost. I looked at my savings, checking, and projected income and realized I could pay the bill. It leaves me with five dollars until November. I have been a person who exercises, does not smoke, d […]

  2. Adam L

    October 9, 2009 at 11:18 pm

    Well said, Alex.

  3. Charles Malone

    October 9, 2009 at 11:46 pm

    Thank you for sharing. Your painful story clearly reveals the horrors of having such a ramshackled health care policy in this country.

    May God be with you always,

  4. OrganicGeorge

    October 10, 2009 at 8:50 am

    I am that statistic.

    2003 upper middle class, my own company, wife successful writer

    2004 I’m diagnosed with cancer

    2005-2008 complications due to chemo I’m in and out of the hospital contantly

    2009 bankrupt and unemployed

  5. Kim Bradley

    October 10, 2009 at 1:39 pm

    Hi Alex,

    Like you, I was recently devasted by a diagnosis of MS. At 46, I have a healthy family and lifestyle (semi-vegetarian, non-smoker, drinker, etc.) and a productive career (lawyer). The big difference between us is that I am Canadian, and live in a country where our medical system, despite some gaping flaws, does not leave people to struggle alone with such heavy medical burdens.

    As I observe the ‘debate’ in the US about healthcare reform, I can only shake my head in wonder. It amazes me to hear critics of the Canadian system compare us to communist countries…do they realize that the largest communist country in the world, China, shares a crucial characteristic with the US in that neither country has a system of uniform healthcare coverage for its’ citizens. In China, as in the US, people with catastrophic diagnoses like yours and mine have to go into debt to get medical help if they don’t have adequate insurance. How many Americans are comfortable with that comparison?

    Although I’ve had to leave my job while I’m undergoing treatment for my MS (mitoxantrone chemotherapy) and so have lost part of my income, I don’t have to worry about medical bills or pharmacy costs. Our medical premium (which is income based) is $108 per month (which is the maximum payable) and provides full coverage for our family of 5. When I start on a new medication in January (probably interferon, which costs about $20,0000 a year) I will pay an annual deductible (again, income based, probably around $2000) and then my provincial health plan (BC Medical) will cover the rest. Of course, part of my federal income tax goes into our provincial health care plan too. However, I have had numerous MRI’s, consults with specialists, CAT/PET/MUGA scans and various treatments (IV steroids, chemotherapy) and my main out-of-pocket expenses have been for parking while at the hospital!

    You have my best wishes in your struggle against this awful disease. I wish there was something I could do to help in the larger struggle for healthcare reform in the US. Having gone through the experience I have this last year, I thank God that I’m Canadian…

    Kim Bradley

  6. Adam Searing

    October 10, 2009 at 2:19 pm

    We are going to get health reform – it’s not going to be perfect and will take a while to put in place, but in the end most people will have decent health coverage.

    The reasons we are moving forward are multiple, but a major one is because people like Alex have worked very hard to not only deal with their own problems but also communicate with everyone from politicians to the public about what reform means for our country as a whole.

    Thanks Alex!

  7. Emily Weinstein

    October 12, 2009 at 9:09 pm

    Thank you, Alex for your work on this. Your story is everyone’s just to differing degrees. Em

  8. Jane Filer

    October 18, 2009 at 11:13 am

    This is what is happening to so many people. I hope and pray this changes soon. I am paying $780.00 dollars per month for a $20,0000.00 deductable because I had thyroid surgery. I am afraid to go to the doctor because if I get sick again my husband will suffer on account of my health problems. Everyone knows what is going on in the medical industry is legal organized crime. You want protection, you pay as much as they can get out of you, you miss paying and get sick, god forbid, you might die. But here’s the kicker, I’m paying too much to subsidize the people who can’t pay. So I’m paying too much money for too little protection.
    Thanks everyone for listening and caring.

  9. joan vandermeer

    October 20, 2009 at 8:18 am

    this is a very thoughtful letter and i understand totally your situation…and so sorry to hear you have been dx with MS.
    I am lucky that i have health care that i can afford but also know many people who do not have what i have, but deserve it just as much as i do. I am so hopeful that a plan will pass that will not discrimate but will provide coverage for all Americans. Health Care is a right, not something that is just for certain groups.

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