Publisher's Note by Dan E. Weisburd (former NAMI executive)
"What does it take to make you wake up, Dan?" A voice broke into my sleep. I sat up startled. The clock read, 3:15 A.M. "Why hasn't David had a physical?" Was I asking myself? Where had I been? My eldest son has had schizophrenia for 19 years--as many years as he hasn't had it. Do I remember getting him a physical? No. "Where have you been, Dan?" the now exasperated voice demanded. It sounded somewhat like my stern, long-dead father, or maybe it was my internal scolding severest critic--myself. "You'd know full well if David had a physical. He'd have told you. And you'd know the results! You've let him down again, guy. You're just another negligent know-it-all fraud of a family member telling the world he deserves better, and how much you love him!"
It was 10 A.M. before I could reach Martha Long, the director at The Village ISA in Long Beach, the excellent psychosocial rehabilitation program I'd helped to conceptualize, and where my son was now a member. "No, we don't routinely get them physicals, Dan," she answered apologetically. "I'll be happy to pay for a simple Lipid panel, if there's no budget for it," I said. "He eats lots of Chinese food--grease and sugar--loves steaks, and burgers and cheese-- and we both know he rarely gets any real exercise." She agreed to get David an appointment for a blood draw, because, after all, he probably had my genes and I've had a heart attack, five bypasses and three heart surgeries. Given David's life style and genetic inheritance, he could be courting disaster at age 39.
"He is doing well at his job. And he has a lot of friends, here, He seems much happier." She ended on that optimistic note, and I knew it was true. David was thriving on the life the Village staff had helped him attain. He was committed to recovery.
A couple weeks later I got what would be only the first of many reports. Cholesterol 300. Triglycerides 700. Terrible! Outrageous! Much worse than my readings when I'd had my heart attack. "What does the doctor say about that?" I asked. "They'll test him again in three months," answered his personal service coordinator. "What kind of doctoring is that? That's not good enough," I replied and asked for an immediate retest, "And have someone be sure David's done the necessary overnight fast. That alone could skew the results." "Yes, sir," said the voice at the other end.
The retest gave even worse results followed by the same lame "...retest in three months" reply. I had done a little research of my own between the two tests. It seems that the marvelous new atypical medications significantly elevate both cholesterol and triglycerides in most patients who take them. David was on high levels of both Clozaril and Zyprexa. With our family history he could be destined for coronary disaster--especially as a two-pack a day inhaling smoker whose rumbling cough is frightening to witness. Why hadn't his psychiatrist of eight years warned us?
I brought David home, and took him to his mother's internist, Gilbert Ross, an old family friend, who agreed to be David's principal physician, if David agreed to do what he prescribed. David said, yes. Ross would offer his services pro bono because he didn't want to do the MediCal (Medicaid) paper work, and he knew that if I paid (as a third party) it might be used by the bureaucracy to jeopardize David's SSI and MediCal eligibility.
David's blood work came back from Ross' lab worse than ever, and this time I had been the fasting enforcer. Because of David's profile, Dr. Ross prescribed large daily doses of Lipitor, checked with MediCal and of course they refused to pay for it, so he gave David all the samples he had, and we began a six-week test. At the end of six weeks David's readings were normal! Cholesterol down from 320 to 184. Triglycerides down from 700-plus to 130! Ross wrote the paperwork, and now MediCal had to pay for the costly Lipitor. But what about all the others who are lucky enough to get the new breakthrough atypical antipsychotics? Who would advocate for them?
I called some top people at Los Angeles County Mental Health. No one wanted to reply for the record. Off the record I learned they knew of the problem, and that few if any clients got physicals. Who will pay was the question. And if they got physicals, given their below poverty level lifestyles, medical problems were bound to surface. Who will pay for the needed medical care? It was a question of reimbursement--plain and simple. "Has this non-productive population been written off as expendable? Are they, in reality, putting aside politically correct rhetoric, discard people?" I didn't expect an answer. And I got none.
As we read this issue about wellness we would do well to remember that treatment works and that recovery is possible, but never for a moment must we forget that enlightened social policy and dollars to do the job is what will make what is needed available. And, how do we get that? # # # We gratefully acknowledge the efforts of our co-editors Dede Ranahan, Diane Vines, Suzane Wilbur, and Ed Diksa who brought in a majority of our authors.
Dan, if you read your words at this post, please get your son a REAL physical - not one which supports erroneous medical theories upheld by the the pharmaceutical industry and paid for in human lives.
The 29 testable, verifiable and correctable causes of schizophrenia are listed here.
You will find information on drug withdrawal in our Links column.
And we wish you both the best of luck!