I provided consultation for five patients who are newly positive for HIV in the last two weeks, and it was a depressing experience. Three of them had a very low CD4 count (<50) indicating that they have had the infection for a while. Dr. Carlos del Rio and other HIV experts believe that “Any HIV diagnosis with a CD4<100 is a sentinel event.” Occurrence of infections in previously uninfected individuals reflects high risk behaviors and transmission in our communities, and diagnosis at an advanced stage indicates that our public health infrastructure and our prevention programs need to be stronger. My consultation experience made me re-read a book that I enjoyed reading last year, ‘Positive’ by Dr. Michael Saag, an infectious diseases physician and a prominent HIV/ AIDS researcher.
This blogpost is a book review and a plug for better healthcare. The book is his life story, which is mostly a story of how the HIV epidemic played out in the US, particularly in the deep South, and a view of the US healthcare system from the trenches of academic medicine. Dr. Saag believes that his work is his calling, his ‘beshert’, a Yiddish word for destiny and a feeling by the one who experiences it that something special is going on. He connects his multiple identities, i.e., being Jewish, an American, a passionate movie-watcher, a sleuth, a dreamer, and an infectious diseases physician, that shape his approach to life and work. The book is dedicated “for those we might have saved yesterday, if only we’d have more knowledge. And for those we could have saved today, if only we’d had more courage”.
Inspired by the events of June 5, 1981 when the CDC reported eight cases of unusual opportunistic infections in gay men, his career took a path that connected patient care, bench research with some wonderful collaborators, clinic administration, and political advocacy. His work is so integrated into his life that he almost sneaks a vial of HIV infected blood en route to the lab, into their home freezer. He starts a clinic at University of Alabama at Birmingham where he builds his academic career with the support of his department chair who tells him, “Just try not to run into the red”. The 1917 clinic (based on street number where it is located, to minimize stigma, just like Amelia court clinic in Dallas) is established with a five-fold mission – patient care, social services support, medical provider education, community outreach and research. The staff in the clinic are bound by professional commitment as they provide care to their patients, support each other emotionally and socially, attend funerals and go through a roller coaster of emotions as the story of HIV epidemic unfolds over the years. Cyndie, a Christianity-to-Judaism-convert nurse rabbi, bursts into tears when Dr. Saag hugs her because no one else hugged her since her diagnosis of HIV infection.
A large part of the book is a memoir of mundane yet extraordinary details of their work for HIV patients in the clinic, how he and his collaborators made important scientific discoveries, and how his work was affected by politics and the pharmaceutical industry; as well as the important milestones in HIV medicine, like Ryan White care act of 1990, Elizabeth Glaser’s speech to the Democratic National Convention in 1992 and the formation of Elizabeth Glaser Pediatric AIDS Foundation, naming of David Ho as the Time magazine Man of the Year in 1996, and the unveiling of President George W. Bush’s PEPFAR program that invested $44 billion in >100 countries to improve care for patients with HIV.
The most poignant part of the book is this question that he tries to answer for himself. “Since we had solved the big scientific questions about treating HIV, why wasn’t the process of providing treatment getting easier? Here’s the answer I came up with, one that I found maddening. My life in HIV medicine was getting harder not because we didn’t have the science; increasingly, we did. Life was getting harder and more complicated because The System wasn’t our friend.” To say that much of the second half of the book is a rant is an understatement. And then there is a sense of hope. “Who can change The System? We can. But we need to stop yelling at each other and start listening to the facts. The facts are our friends. They show us where we are, how we got here, and how we can get out.” “The System that is failing will be reformed through the ordinary agents of truthfulness, common sense, courage and human dignity. And, if necessary, magic.”