Monday, April 06, 2009

An old friend's fight.

April 5, Ava.

My friend Lisa lives in Republic, a small town near Springfield, Missouri, an hour away from here. The last time we saw each other was fourteen years ago. I drove along deserted Ozarks roads to visit her and her partner today (the church parking lots were full.)
Lisa was diagnosed with multiple sclerosis last year after a doctor's visit to treat what she thought was a tendinitis.
She later realized she had had MS symptoms since her early twenties: tingling sensations in her limbs, difficulty swallowing sometimes, piercing pain to one side of the head, all misdiagnosed, telltale dots that nobody knew enough to connect. Because the disease was detected so late in her life, she says, it is now more difficult to slow its progression.
Lisa has had to quit her job. On bad days she has trouble moving around and cannot walk without a cane, and is sometimes in excruciating pain. Simple tasks become overwhelming even on good days. But she is the same as back when she was my boss at the annual photojournalism contest held at the University of Missouri-Columbia, when we worked together bent over slides for hours on end; she's funny and quick and warm, and so is Carol, her partner of many years.
They told me the story of Lisa's struggling with MS, and also that new drugs that are able to stop the disease, not just slow it down, are available in Europe but remain without the reach of MS patients in the U.S. for lack of FDA approval, despite having been proven safe and effective. The talk show host Montel, who has MS, goes to Europe regularly to get treatment, they told me. He's wealthy and can afford it but for the majority of MS patients, like Lisa, stopping the progress of MS' debilitating symptoms remains unattainable. Lisa and Carol think it's all part of a conspiracy by the pharmaceutical companies to keep the MS patients' community milking cow going, making lots of money for their labs.
The wanted to come see the show but Lisa started feeling pain in her shins and they had to relent.
Maybe next year, she said.
How will she fare next year if she doesn't get the drugs she needs?

Carol (seated) and Lisa at the kitchen table.

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