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Nov./Dec.
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CommonHell: A prescription for frustration Humor by Sharon Wachsler 
Two world events have been garnering a great deal of media attention this year: Okay, this is not entirely an analogous comparison inasmuch as there has been a virtual media blackout regarding my health care. Granted I have not held press conferences nor even published an anonymous apocryphal Internet legend about it, but still -- the public has a right to know. Thus, I am embarking on an in-depth exposé: How long can it take for one savvy disabled woman to procure prescription and personal care services? Can it possibly take as long as it takes a U.S. president to wage war? The answer might give you a headache. Background: 1999-2001 Evidence surfaces of congenital disabilities and cancer among Iraqi children resulting from U.S. use of depleted uranium missiles during the first Gulf War; the U.S. bombs Iraq's air-defense network; Iraq refuses compliance with UN inspectors, and I develop almost daily severe migraines. Some people -- who do not have migraines -- suggest taking an aspirin. Taking an aspirin for a migraine is like trying to pound a nail into a board with a dandelion. So I start taking a prescription narcotic -- a pain medication that's supposed to be a blast for people who are not in agonizing pain. This is hard for me to relate to, since when I take it, my fun level rises to trying not to puke. Thus, I ask my doctor to instead prescribe some migraine-specific drugs in a class called "triptans," and I start taking the cheapest triptan, Zomig. Nine Zomig pills costs $154. That's over $17 per pill. So, when I have a migraine I try to decide, "Is it bad enough that it's worth gambling $17 that this will help? Or should I just sell the narcotics to street junkies so I can afford more Zomig?" Did I mention that because I am on Medicare I have to pay out of pocket for Zomig plus the many other drugs I take? (Medicare is run on the sound principle that elderly and disabled people rarely, if ever, need prescription drugs. Medicare also fails to cover my medical oxygen. After all, if we let elderly and disabled people breathe, everyone will want to.) Reconnaissance Begins Late summer 2002: Iraq invites UN chief weapons inspector to Baghdad, and In desperate need of personal care assistant (PCA) and prescription coverage, I apply for CommonHealth, which is part of MassHealth, the Massachusetts form of Medicaid. The MassHealth application comes with a "Member Booklet" that provides no information, yet manages to be confusing and contradictory. I call to ask which services are covered. The man I speak to doesn't know anything beyond what's printed in the booklet, which, he tells me, is designed to be comprehensible to a person with a seventh-grade education. Seeking Authorization Autumn 2002: On September 19, President Bush asks Congress to authorize the use of force against Iraq; within twenty-two days Congress complies, and Confused as to how CommonHealth eligibility works, I speak to another MassHealth representative; she tells me that I automatically qualify for CommonHealth because anyone disabled is eligible -- and being on SSDI is proof of disability. Further, if I can show that I work 40 hours or more per month, my deductible will be waived. She tells me to send my 1040 and Schedule C tax forms as evidence of my home business. Encouraged, I fill out the application and have my PCA, Laurel (whom I pay out-of-pocket because Medicare does not cover PCAs), photocopy my SSDI approval notice and my 1040 and Schedule C tax forms, and highlight the "business income" lines. Just in case, I also attach a letter explaining that I am disabled, receiving SSDI, and working from home. Mixed Messages December 2002: President Bush tells a reporter, "[The U.S.] government will continue to lead the world toward more peace. You said we're headed to war in Iraq -- I don't know why you say that. I'm the person who gets to decide, not you," and I receive a hefty packet from MassHealth asking me to "fill out the enclosed Disability Supplement." In boldface it declares, "If you do not return the form to us within 60 days we will not consider you to be disabled." The Supplement consists of a lengthy medical questionnaire, and medical release forms and contact information for every doctor I've seen in the last ten years. I fill it out, adding helpful hints such as, "Please note that I have been receiving SSDI since 1996 and am therefore considered disabled by the federal government." Tensions Escalate January 2003: Headlines proclaim: "War on Iraq now looks most probable" (Bangkok Post) and "Britain urges U.S. to delay war until autumn" (The Telegraph), and I receive a notice from MassHealth informing me that I have been denied CommonHealth -- unless I am able to spend down a $8574 deductible within the next six months. I take comfort that it is not actually me, Sharon Wachsler, who is denied; it is a Sharon whose last name is spelled "Wachster." When I call MassHealth I am told the reason for my denial is that I am not working. I explain that I am working as a freelance writer. The MassHealth representative tells me to send a letter explaining that I work from home with my 1040 and Schedule C tax forms. I tell him I already did that. He says MassHealth has no record of my documents nor my claim that I am working. I also ask if he would mind correcting the spelling of my name. He happily takes care of that administrative error. I have Laurel (whom I pay out-of-pocket because Medicare doesn't cover PCAs) photocopy these materials again and mail them registered, return receipt requested. I also include a lengthy letter explaining each enclosed document. I sign off, "I expect a response indicating that I have been approved for CommonHealth based on the facts that (1) I am disabled (receiving SSDI), and (2) I am self-employed, working over 40 hours per month." Just in case, I include this postscript: "Please correct the misspelling of my name in your file. My last name is Wachsler. You have it spelled with a 'T' where there should be an 'L.'" Battle Looms Late January 2003: Bush is furious that a European peace initiative is intended to delay the U.S. timetable for war, and I receive a MassHealth card, indicating that Sharon Wachster has been approved and that my premium amount will be $46. Whoopee! I call and ask that they correct the spelling of my name. That evening I learn that our Republican governor, Mitt Romney, who vowed not to cut any "necessary services" has decided to cut MassHealth coverage for dental, chiropractic, eye care, prostheses, and hearing aids. Romney also announces a raise in the copay amount for MassHealth prescriptions and doctor's visits. Despite these cuts I am glad to finally be on MassHealth -- for the prescription coverage. A few days later I hear a report that Bush has announced that any state that abolishes "optional" Medicaid services, such as coverage for durable medical equipment, mental health services, and prescriptions, will receive a bonus of $3.25 billion from the federal government in 2004. On the Brink? February 2003: The U.S. strikes a deal with Turkey: a billion-dollar aid package in exchange for allowing U.S. troops to be deployed there for a war against Iraq, and I receive a letter stating that MassHealth will be increasing my premium based on my income as it compares to the federal poverty level (FPL). Enclosed are various charts that tells me how much my premium could be, depending on what percentage I am above the FPL. However, the FPL is not included. I guess that is the kind of thing we should all have memorized. "You will get a notice in mid February 2003," the letter taunts, "that tells you what your new monthly premium will be." Two weeks later I receive a notice telling me that my premium amount has almost doubled -- to $88. When Will It End? March 2003: Bush gives the UN a 24-hour ultimatum to enforce its demands for immediate Iraqi disarmament and continues to press Congress for a budget of $1 billion per day for the Pentagon, and I receive another notice: "You recently received a letter that told you what the new CommonHealth Premium amount will be," it opens. "Your premium was calculated incorrectly." The correct premium amount turns out to be $57.20. Remember when I was told that their materials were supposed to be readable for someone with a seventh-grade education? I've got a BA. I've taken calculus. If their system is so complicated that neither I nor they can figure it out, what seventh grader can? Costs Mount April 2003: The Pentagon estimates the cost of the Iraq War and occupation for six months at $85 billion; with the money offered to Turkey, the cost is over $100 billion, and Part-way through my application process for the PCA program, my advocate mentions that working people with disabilities might be cut from MassHealth. I call MassHealth for details. The woman I speak to says she knows of no such cuts, adding that when these changes occur, people receive a notice about it telling them they no longer have coverage. I do not find this comforting. Victory? May 2003: Bush declares "Victory" in Iraq on May 2, and On May 5, I receive a letter outlining the additional cuts the House wants to make to MassHealth. These include redefining eligibility for PCA coverage, cost caps for medical services for disabled adults who are not on SSI, redefining disability, cutting health services for children with special medical needs, and limiting a consumer's prescription coverage to seven medications. (I am currently on ten prescriptions.) On May 9, I am approved for personal care assistance services. Dubious Decisions June 2003: Evidence mounts that reports of Iraq's "weapons of mass destruction" were fabricated; and Since I usually take several pills for each migraine, my neurologist decides to switch me to a longer-lasting medication in hopes that it will cut down on the number of pills I take. However, I'm informed MassHealth won't cover the prescription because it costs more than Zomig. Limiting Humanitarian Aid July 2003: Secretary of Defense, Donald Rumsfeld, announces that the cost per month of maintaining forces in Iraq (not including reconstruction or humanitarian aid) will double to almost $3 billion; and My pharmacy refuses to refill my Zomig prescription. They say I can only get six Zomig pills per month. I am irritated at their mistake; I can go through six Zomig in three days. My prescription is for nine at a time and I had been refilling it as needed. The head pharmacist explains that MassHealth has altered its policies: there are tighter restrictions on which brands and how many pills are covered -- regardless of what a doctor prescribes -- for various conditions, including migraines and blood pressure. I take comfort in knowing that the worst that can happen if someone doesn't take enough blood pressure medication is that he'll stroke out and die. More Bombs Drop August 2003: Attacks against American and British forces continue in Iraq, and My neurologist fills out paperwork for an override; MassHealth agrees to pay for twelve Zomig per month. Meanwhile, MassHealth has decided to implement asset limits that will (1) go into effect the last week of August and (2) kick me off the program. However, due to pressure from disability rights advocates, MassHealth agrees to postpone the asset limit until February. It's almost like waiting for a bomb to go off. But who knows? A lot can happen in six months. Sharon Wachsler is an activist, cartoonist and humorist. Read her humor column at http://www.AbilityMaine.org/Sharon.html WHAT DO YOU THINK of what you've just read? Send us an email.
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