Here is a lightly edited version of a letter I wrote in April, two days before the first night in my car, and almost two months before passage of the referenced act.
TO: Senator Griffin, Representative Gowan, Representative Stevens and Governor Brewer
FROM: A constituent from southeastern Arizona
RE: Health care legislation
DATE: April 22, 2013
Dear Legislators and Governor:
I understand that some members of the state legislature are currently researching the potential impacts and outcomes of the Patient Protection Affordable Care Act. I want to share my medical and economic status, to add to your consideration.
I am a former member of what we vaguely call the “upper middle class:” an excellent education (B.A. plus two years in graduate school), a career in service (first journalism and then not-for-profit management, fundraising, marketing, training and consulting), and a lifelong dream of owning a home – a goal I had the privilege of assuming would happen, given my socio-economic status.
My health began to decline at age 30, when a car accident and back injury sparked chronic pain that remained after the acute injury healed. But I was energetic and determined to heal, stayed physically active while adjusting my exercise regime to the new reality, and advanced my career more in that decade than any other. I aspired to becoming executive director of a larger agency (having been ED at two small ones) and looked forward to aging well. I had health insurance through my jobs and was able to afford the medical care I needed.
At age 40 the fatigue hit. I was working a demanding job that involved regular 50+ hour weeks and a lot of national travel. I performed well, but I had only enough energy for my job. At the end of the day that was it – no energy for socializing or fun. That was fine; I was functioning and keeping a job I loved despite social isolation. A middle aged woman complaining of fatigue, however, does not get a lot of attention. Doctors adjusted hormones, but never did any other kind of work-up. I had knee surgery and again recovered well – thanks to health insurance covering the surgery and physical therapy and follow-up.
Over the next few years other things I’d never paid much attention to started increasing in frequency and severity: Mood swings, mysterious little jerks, pin-prick pains that started combining with the jerks, and strange pains and bruising in my calves that I eventually correlated with eating gluten. I quit gluten. I hadn’t had alcohol or sugar or sweeteners of any kind for many years. I exercised regularly and was toned and in great shape.
But despite my healthy living, the fatigue continued to worsen. I had started a solo consulting business, permitting me to work my own schedule, and loved it. But travel had become so challenging that I was not in good shape to work with the clients once I arrived. By my mid-40s I was no longer able to make appointments with friends or clients, as I could not predict how I would feel at appointment time. Always I asked: What the heck is wrong with me? What is happening? Tell me what to do, I’ll do it, I just want to be healthy again!
The consulting practice suffered. I had to let my insurance lapse – and the only reason I had insurance at that point, as a small self-employed practice, was thanks to the Arizona state insurance program for small businesses. But I had to stop working. I found myself without insurance, and going through my other resources. After savings were gone, I cashed out the investments that remained after the market crashes. When that was gone I cashed out three of my four IRAs. (Stay tuned, that remaining IRA is central to my current story, making me ineligible for AHCCCHS and any other public benefits.)
I hit a mental health crisis and visited a mental health agency. I had been paying for a private psychiatrist after the insurance stopped but could no longer afford to do so. Thank God for the Arizona program(s) that now provide me with free psychiatric medications and med checks (despite budget cuts that made me ineligible for a case worker and other programs). Thank you, if you voted for that. You saved my life. The mood swings would have claimed my life by now – I’d be a statistic in the suicide counts without that state program.
If I remember correctly, I’ve now been without insurance for about five years. (I am 53.) During that time the “strange” “health issues” that I couldn’t explain began to affect my functioning. The jerks make me make mistakes with the mouse when on the computer. The jerks and pin pricks went from a few times a year in my 20s to several times a day. My memory crashed. My once-sharp mind starting missing things, lapsing in embarrassing ways. The leg pains … oh god, they scare me. Once recently I woke up in an agony of pain – like a band of pain wrapped around my hips and covering every inch of leg and foot. It took me a couple hours to get out of bed and move around. Aspirin did nothing.
A few months earlier I’d gone to a local doctor, paying a $50 cash fee, to get things documented for my disability claim. (It was denied, including on appeal. No insurance = inadequate medical records = no chance at being approved for disability.) I reported the latest symptoms to the doctor. He wanted to send me out for an MRI and a neurological checkup to see if I have multiple sclerosis.
I didn’t have insurance. I couldn’t, and can’t, find out if I have MS. In the meantime, I started reading about MS and was alarmed at what I found: All of the “mystery” symptoms (including unexplained falls over several years) are on the lists of MS symptoms. And I learned that as a single childless adult my health benefits were limited in Arizona.
I saw the doctor again recently for the leg pains. He could do nothing but tell me again that I should get an MRI and neurological workup.
How many years do I have to go without a proper diagnosis and treatment? If you approve extending AHCCCHS eligibility up to 133% of the federal poverty level, I have a chance.
Then again, maybe not. My income (I now do telephone psychic readings, which lets me sign on to take calls when I feel able, and not when I’m not) is under the ACCCHS guidelines. BUT I still have that IRA, which counts as an asset, which is more than $2,000 since my father bought it for me when I was 21.
That retirement CD was taken out in the early 1980s when IRAs were new and things hadn’t been standardized. I tried to cash it out when I cashed out the others, but the bank said that there is a 50% or 100% penalty for doing so (depending on who I talked to). It will pay out a lot of money in six years, so I’m keeping it.
Do I have to suffer from MS without treatment or a solid diagnosis for the six years until I’m 59 because I have an IRA? Is it good public policy to encourage people to cash out their IRAs? It seems better public policy to exempt IRAs (or all long-term assets that involve penalty for cashing out) from AHCCCHS/federal health benefit eligibility requirements. Then, when the IRA pays out, eligibility ends.
In the meantime, I have foreclosed on my home. I moved out February 12 with ruined credit (it used to be stellar). With that and weak income, no one will rent to me despite having good local references, even if I could afford any rent at all, which I can’t. Seeing this coming, I’ve looked for two years for a caretaker position exchanging housing for work, with no luck.
Bless the friend who is letting me stay with her rent-free, but that is only temporary. I am neither tough enough nor healthy enough to be homeless. I have no family to speak of. The health conditions contributed to social isolation, so I do not have much of a network from which to seek help.
I never thought I’d be in this position. Having that faith was a benefit of my socio-economic position. Turns out, hard work and intelligence are NOT enough to survive.
Even if the assets test doesn’t change (although I hear it is decades past revision), my intent is that this letter improve your understanding of the impact that multiple and complicated health conditions can have on a person’s ability to earn a living, and the need for public health insurance to help people like me access medical care. I’m taking advantage of an increasingly rare clear hour (i.e. cognitively) to write this.
Complex and difficult-to-diagnose conditions cannot be treated by emergency room doctors, nor can they provide the long-term and cross-disciplinary care I need. (Orthopedic, psychiatric, internal medicine, neurology for starters.) And paying $50 to see a doctor on a cash basis doesn’t help much without being able to pay for the MRI and specialist followup.
PLEASE vote for the proposed extension to 133% of FPL for AHCCCS. And please also add to the agenda, if it’s not already on it, exempting IRAs from the assets test, and increasing the assets test’s ceiling.
P.S. I do not know if President Obama’s health care program has changed the Medicaid assets test. It’s been too complicated for me to research.