Wednesday, August 19, 2009

Advocacy: healthcare reform

A letter to my representatives:

Request: Healthcare reform that provides a real safety net (a government option)

“…the moral test of Government is how that Government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.”
—Hubert H. Humphrey

Greetings from the shadows.

After living with an incurable, debilitating disease (multiple sclerosis) for 28 years, I offer these opinions from my wheelchair:

  • Quality healthcare should be available to everyone, even people with health problems.
    (Insurers should not be able to deny coverage for pre-existing conditions or discontinue coverage after a potentially-expensive diagnosis.)

  • Quality healthcare should be affordable

    (Non-elective medical expenses should be no more than 20% of a family's monthly income. When they are, the government should help families pay.)

  • Quality healthcare includes home health: care attendants who provide help with activities of daily living for those unable to do them.

  • Healthcare case managers* should help doctors and patients coordinate care and find the most cost-effective solutions.

  • Reward people for good health habits, but don't punish them for bad luck.

    (I have never smoked or been drunk, high, or overweight, but I am sick.)

[* I am aware that care coordination has not fared well in some studies, but having specialists and GPs work together with a long-term treatment plan (which mine don't) makes so much economic and medical sense to me!]

How it is for me now:

My husband lifts me out of bed and into my wheelchair (insurance helped pay for it) and then from my wheelchair to the toilet, where I pee and dress. He lifts me back into the chair. We each go to work. I drive our handicap-accessible van (we paid out-of-pocket). One of us takes our 11-year-old to her day camp. At about six o'clock, we all meet back at home and my husband helps me to the bathroom again. I sit in wet “disposable underwear” (adult diapers) in my wheelchair for 6 to 8 hours each day (depending on how my neurologically-challenged bladder is doing). We can't afford to hire anyone to help me to the bathroom during the day. (Home health agencies have two or four hour minimums.) Insurance will not help us because they do not pay for “custodial care.” A nurse involved with my care is concerned that I will develop pressure sores.

With our two incomes—and spending about $1,000 a month on our high-deductible insurance plan—we make ends meet.

What I fear:

The company that employs my husband is for sale. It is possible the buyer will take the intellectual property (patents) and close the company. No health insurance. The “disease modifying drug” (Avonex) I take costs over $2,200 per month. I would discontinue that. I am due for a refill to my baclofen ITB pump (spasticity medication) in January. That will probably cost $600. If I skip that, I will be in constant pain.

I don't spend much time on the fear road. It gets too big too fast. What happens if my husband has a medical emergency? We don't have any backup for him. What happens when I am no longer able to work? Apparently, even if one does get approved for disability benefits, it takes a couple years before any benefits are received. How will we get by?

What I hope:

I imagine a world where my case manager helps me sort through medical options the various specialists are recommending by weighing expense against long-term outcomes. I dream of getting some help so that my husband doesn't have to do everything (and can start saying yes to travel requests by his employer). I long for a life where everyone in the US can rely on a healthcare safety net that allows access to the care we need.

Being able to count on having healthcare, I could refocus my energies on raising my child and contributing to my community, rather than wondering if I am too much of a burden on my family.


  • A "government option" should be a part of any healthcare reform passed by Congress.

  • In order to insure all Americans, I would support a plan which increases taxes for middle and upper income families. (That includes mine… we make about $110,000 a year.)

  • Healthcare “rationing” doesn't worry me. I would welcome being told a surgery or medication would not be an option because it wasn't cost effective in the “big picture.” [I am on the wrong side of this argument, according to most disability advocates.]

  • End-of-life counseling makes sense to me, as long as final decisions are kept between individuals and their doctors and suicide is not made attractive through failures in care.

A healthcare system driven by “market forces” leaves the most vulnerable of us behind. Please do what you can to make quality health care available to all Americans.

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