. . .alas, a Faustian bargain:

The year was 1982 and I had just written, Families in Pain after inheriting the care-giving responsibilities for my brother from our late parents. He suffered with schizophrenia. I was at the annual NAMI conference in Washington, D.C., pitching this book, when a tenacious, passionate and indefatigable advocate named Muriel Shepherd invited me to breakfast with others from New York.

The purpose of the invitation was to organize a state chapter - there were many locals -- of the fastest growing grassroots advocacy movement in the nation. Since its founding in 1979, NAMI would stop at nothing less than demanding research and services for people with mental illness. The mission was clear, the need was indisputable, the citizen armies were gathering troops. I signed on.

I was the youngster of the breakfast meeting, in my early thirties; hearing the stories of parents in their sixties and seventies broke my heart. Is this what I would face, watching my brother go from crisis to crisis, in and out of hospitals, hoping his treatment included a medicine that worked? Over bagels, we discussed what needed to be done. High on the list was new drugs.

Until then the pharmaceutical industry treated schizophrenia and depression as candidates for "orphan drugs." No market, they thought, no profits in developing drugs for mental illness. Clozaril, the controversial drug made by Sandoz, was making its way through law suits and testing and not generally available in America, though widely used successfully throughout the rest of the world. In short, there was a paucity of what we now call the second-generation drugs.

Many of the children of NAMI founders were the poster-children of the revolving door. With government spending thirty times greater for cancer than for research about schizophrenia, a fact often repeated by then director of NIMH, Dr. Herbert Pardes, families were facing an abyss. They turned to pharmaceutical companies, begging them to do something. Even then, estimates of the economic and family burden for these illnesses were staggering.

When the state and local chapters, the FDA, other advocacy and research groups turned to drug companies for help, they did so out of desperation. Now we wonder if it was a Faustian bargain.

We should have known that you don't get something for nothing. In the 1980s, however, pharmaceutical companies seemed to be responding to the cries of distraught parents. It is now apparent that pharma would later move into the driver's seat by co-opting the very need they were harnessed to help.

We are seeing how psychiatry (and other specialties) have allowed pharma to dictate business decisions and profits for patient care. There is a long list of prominent psychiatrists and researchers whose income grew working in darkened halls with pharma in the last decade. Doctors who allowed ghost writers to use their names for industry-crafted journal articles, others repping for pharma in so-called educational meetings -- for which they were handsomely reimbursed -- over lunches and dinners. Professional meetings at which pharma sponsored seminars tipped to promoting their own drugs. And the early seduction of psychiatric residents, still in training, to become camp followers. These, and more, have been brought to light by congressional probes and courageous doctors who were once attracted, later repelled, by the process of such an unholy alliance.

My eyes glaze over at the billions of dollars of profit from second-generation anti-psychotic meds along with the deceptive practices underwriting this gain. I join others in disgust at the deliberate contrivances of withholding vital information necessary for decisions about what medicines do and don't do. I am appalled that the life-threatening side effects are producing a shorter life-span of 25 years for people with a mental illness. I am horrified by the manipulation of the FDA to expand the life of a patent by slightly changing a drug from short to long-lasting, or applying for an additional use application. And I am enormously saddened by the loss of every person, some by suicide, others by the side effects, still others by the failure to combine therapies allowing the pill (or a cocktail) to become the only strategy helping people return to a community where they may live fully in rehab or recovery.

Of these outrages, there can be no doubt. The complicity of the drug companies in cover-ups, by withholding key information, are now the subject of so many law suits. Of note are also the number of people who have sought alternatives to the commercial drug industry, eschewing medications altogether. For many it is working fine. And for those for whom drugs are not part of a successful regimen, the contempt of the disclosures about advocacy organizations, the psychiatric profession, and perceived indifference only grows. But not all are able to survive or thrive without the help of medication. My brother is one such person.

That NAMI, and other advocacy organizations working to improve awareness and treatments for mental illnesses, are now caught up in this speaks volumes about a failure of public and private funding to improve treatments for mental illness. And about a shortsighted leadership that didn't, perhaps couldn't, fill the financial needs to fulfill their missions in other ways.

Wouldn't it be nice if there were no need for NAMI, NARSAD, or MHA? And wouldn't it also be nice if, as did some, all local chapters of NAMI returned checks from pharmaceutical companies because they didn't trust the motivation - or want a closer relationship. But, alas, they didn't and now they are being held accountable. One wonders if this would still be the case had drug companies paid more attention to science than to profits.

My active involvement in NAMI ended about two decades ago. And it saddens me to see how the intentions, motivation, energy and passion that produced this organization are now under question. Yes, drugs were sought by families of the most difficult to treat people when little else helped. The exploitation of this need has, alas, tarnished reputations, and with them the credibility of groups for whom solving the intractable problems of mental illness remain as much of a personal tragedy as they do a public health imperative.

I take no pleasure in reporting the breach of confidence, the appearances of conflicts-of-interest, and the embarrassment to the organizations that failed to see how their pursuits to help people with a mental illness have brought us here. My hunch is that if they were to do it all over, it might have taken a different course.