Issue:  Vol. 48 / No. 7 / 15 February 2018

Inspirational medicine


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Voices in the Band: A Doctor, Her Patients, and How the Outlook on AIDS Care Changed from Doomed to Hopeful by Susan C. Ball (Cornell Univ. Press, $27.95)

"Bad enough that HIV was so untreatable and devastating; but for some, for many even, HIV existed as an addendum in a life that ached with need," writes Dr. Susan Ball in Voices in the Band, her remarkable memoir about being an internist for the last 23 years at the Center for Special Studies, a designated AIDS care center at New York Presbyterian Hospital. By using examples from her practice, Ball charts the evolution of HIV from a death sentence to a chronic, manageable disease, highlighting the dramatic changes in AIDS treatment throughout the 1990s.

What makes her account affecting is that her patients were often the poorest of the poor and the sickest of the sick. Many were gay men, but others were drug addicts, transvestites, transgender people, or wives and girlfriends of bisexual men who had infected them, plagued as much by bad choices as by a virus, such as the gay Stewart, with a fixation on any symptom, however minor; or Peaches, a crack addict rejecting any new drug treatments. One of Ball's insights is that while care and treatment for AIDS patients have changed, the disease and its sufferers have always been marginalized, with the disenfranchisement shifting today towards the indigent and people of color.

Ball says the patients are at the heart of her book, but the disease's effects on caregivers are a close second. Ball, a lesbian, interweaves bits of her own biography, as the wife of a gynecologist and mother of two boys, into the tales of patients, some of whom survive beyond 1996, the miracle year when the protease inhibitor-HAART cocktail revolutionized AIDS treatment. Many patients were snatched from death's door in a Lazarus-like resurrection. It had been the kind of world in 1992 where you could be away at a medical conference, and when you returned your first question would be, Which patients died?

Ball is effective in conveying the sense of exhilaration throughout the late 1990s as the cocktail drugs gave PWAs a life they didn't think they would have. "As I looked back at 15 years of death and no effective treatments to offer, the changes at first seemed like illusions, as if conjured by magic. I almost felt that at any moment the 'real' disease would rear up and devour my patients. But slowly I began to believe." She also sees that in the underserved population she assisted, the new drugs alone could not eliminate their circumstances, so the transformative impact was limited. The sense of isolation before and after 1996 did not change for many of those people she attended, because they did not want their family or friends to know they were infected with HIV.

The other huge issue was adherence to the effective therapy or taking doses exactly when prescribed, which in the early years could mean a dozen pills taken four times a day. Patients missed or skipped pills. The result of fluctuating drug levels was detectable virus loads that allowed the virus to become resistant to medications in the regimen. "AIDS was just one piece of a life clouded by misfortunes. Poverty, abuse, absent parents, drugs, violence, mental illness, poor education provided the permanent background for so many patients and their families. AIDS on top of this became just another surge of water in an unrelenting storm. Prescriptions can't heal a broken home, an abusive childhood, or 10 years in jail for drug possession." Ball is unable to make Patient X or Y into someone she or he is not.

The legacy of that early AIDS care was the multidisciplinary approach practiced at Ball's Center for Special Studies, based on the pioneering Ward 86 model at SF General Hospital, in which doctors, nurses, social workers and other caregivers worked together as a team to support patients to provide the best relief possible in spite of few treatment options, including pain management, symptom control, short-term problem-solving, and long-range planning for hospice care. This combined effort created a bond as well as a community between caregivers and cases as they fought a common enemy, which unfortunately dissipated once the HAART drugs became available. Still, the clinical lessons learned included the importance of listening to your patients.

Ball mourns the camaraderie (though not "the bad old days of HIV care"), likening it to a battlefield, with that shared sense of doing something brave as one sought to help patients. Yet she observes how routine HIV care has become, with "AIDS one symptom in a life of limited opportunities, unmet needs, and inequities." These patients would have fared far worse if not for the dedication and skill of such a great clinician and humanitarian. It is privilege to read her story and hear her voice, as well as those of her patients and fellow staff, in what is one of the seminal inspirational LGBT books of 2015.

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