A Case In Point
My Circumstances
Until age 37 my health was normal. Today I suffer from a progressive neuromuscular disease that remains undiagnosed after ten years. The condition includes muscle wasting, peripheral neuropathy, severe osteoporosis, and skin lesions consistent with Sarcoidosis.
My condition makes it impossible to be transported safely. After being seriously and permanently hurt on 3 of my last 5 doctor visits, I recognized that I could no longer function as an outpatient. I am not a candidate for hospitalization or a nursing home, which would make my situation worse. Long story short: due to the unusual nature of my neuromuscular symptoms, my house is customized in ways that would not be provided in an institutional setting. And of course with no diagnosis of my underlying condition, a hospital has nothing to offer.
Does this sound right to you?
Because I am 48 years old, the many programs available to the elderly are unavailable to me. Because the only visiting physicians group serving Delaware County PA takes only Medicare, I am without access to primary care. Although I am receiving social security disability, they impose a 2-year waiting period before activating the Medicare benefit. I have made numerous calls to assorted agencies and doctors' offices trying to obtain a visiting primary care doctor without success.
No specialist will assist either by coming to my home or reviewing my records/films. Mobile phlebotomy (having blood drawn in the home) and home x-rays are two services that are available to me. A review of my records might, for example, suggest repeating certain diagnostic blood work that has not been done recently.
Pain is a major symptom. Having tried basically the entire list of less powerful pain medications with no relief, I was in the process of trials with opioid medications before I became housebound. All physicians I was seeing, both in PA and earlier at Georgetown University Hospital in DC, agreed that I was an excellent candidate for such medication, with no history of substance abuse or dependence. My 23-year career as a school counselor ended only a year and a half ago.
As a housebound patient, no doctor will prescribe these drugs for me. Doctors will not even allow a close family member carrying my identification papers to pick up a prescription for me out of fear of losing their licenses.
Because a doctor must call in a new order for each incident, and due to nursing agency confusion over insurance matters, it has taken periods of several days to two weeks to get a visiting nurse to my home in order to receive antibiotics for each of three recurrent infections of my foot, ankle, and lower leg. Due to poor leg circulation, the result of these delays has been permanent swelling of the right foot and increased pain in the sole of that foot, forcing me to lie down an additional 3 to 4 hours each day.
My past experiences with our health care system include having my HMO terminate coverage over the objections of my doctors for the one benefit that was helping me at that time. One of the doctors was a leading authority on the rare disease with which I was misdiagnosed at the time. I was forced to resign my position and seek employment elsewhere to obtain new insurance.
Before leaving my home state to accept new employment, I was one of several individuals invited by New Hampshire Citizens Alliance in 1999 to tell my "HMO horror story" to the state legislature in support of reform legislation.
I can't leave the house and doubt anyone can help me in the face of a health care industry with more systemic problems than I have. But if anyone wishes to again provide me with the opportunity to participate in speaking out against the indifference of our present health care system to the health of United States citizens, I will be happy to take it.
