Inspiration

Most of my career has been about the institutional response to the HIV epidemic, but I started out as an oncologist. In 1981 — my first day as an oncologist at San Francisco General Hospital I encountered the General’s very first patient with Kaposi sarcoma, among the first AIDS cases in the city. Clinically, there was so little we could do at that point, so the emphasis was really on palliative care. Crazy barriers kept popping up, blocking a human-centered response:  visiting hours, who was recognized as family, rules about blankets from home, so many little rules that really snowballed to dehumanize caregivers and people who needed care. In 1983, we founded the world’s first outpatient full-service AIDS clinic, Ward 86, and the first inpatient ward for persons with AIDS, Ward 5B, and mostly led by the frustrations of the nurses, we were able re-examine all these rules from a human centered vantage. That experience really informed how I conducted patient advocacy in my career—it is not about one person—it is how policies affect thousands or millions, over and over.

Meanwhile, the biomedical response to the epidemic was fraught with policy pitfalls. When the AIDS virus was identified as a retrovirus, AZT (first developed as a possible cancer chemotherapy drug) was unshelved for clinical trials, but there was a loud pushback from the AIDS advocate community about the drug’s cost, side effects and limited clinical benefit. Largely led by the newly organized and potent activist community, revisions in the drug testing and approval process led to the FDA’s Fast-Track system in 1987—welcomed by me and the other clinical scientists involved in the early epidemic response. Hard to believe now that all that happened in just those few years, but the experience drove home to me the need to understand the policy landscape that affects care. Therefore, along with the “usual” activities expected of an academic UCSF physician, I participate actively in the broader set of communities in which medical care and research intersects with policies that promote health. Many of these activities have a connection to my work in HIV, but not all, and it seems increasingly important to engage in leadership, and leverage insights from differing perspectives.

Context

The emergence of the HIV epidemic in the early 1980’s was unprecedented. Responding to the epidemic challenged many of the processes that were in place at the time. We sought move research more expediently into clinical care, while maintaining a robust vetting system. Much of the advocacy work that I have undertaken has addressed these dual goals.

Strategy

As a health researcher, I have published extensively on HIV prevention and care, and that body of work has led to my status as expert. As a perceived expert, my voice is often lent to advisory bodies. As an editor and educator, I have worked to establish changes in how AIDS is defined and responded to. As a researcher, I have conducted work that has redefined standards of care, driving changes in how care is reimbursed.

Timeline

I was one of the first HIV investigators elected to the National Academy of Medicine (formerly the Institute of Medicine) in 1999, but have worked on Academy projects beginning in 1986. I served on the highly influential committee that year whose report, Confronting AIDS, recommended funding AIDS research at a high level but with funds from Congress separate from and noncompeting with those dedicated to other diseases. I chaired two later Academy committees addressing HIV issues and since 2010 have served on a Standing Committee (chaired by former UCSF professor Howard Goldman) advising the Social Security Administration on methods to improve the disability determination process. I chaired a spin-off consensus committee on revising the HIV disability listings and was gratified that our recommendations were accepted in new SSA policy. More recently, I chaired a consensus committee on the measurement of functional ability in the adult disability determination process and am now chairing a new committee to revise the disability determination process for children with cancer.

I have been continuously engaged in HIV treatment guidelines since 1996 serving on the panel for DHHS and another for the International AIDS Society-USA organization which has published updates every two years in JAMA, one of the most highly cited papers in that journal.

I have had leadership roles in several organizations. I founded IAS-USA, a non-profit HIV professional education organization in 1992, and continue to chair its Board of Directors. Now accredited as a CME provider, the organization supports a treatment guidelines process (see above) as well as conducting live CME update programs across the country and publishing a journal, Topics in HIV Medicine. I was a founding member and second President of the International AIDS Society and served as a founding member and President of the HIV Medicine Association of the Infectious Diseases Society of America. I was elected as a fellow of IDSA although trained not in Infectious Disease but rather Medical Oncology.

I have served as the co-editor in chief of the Journal of the Acquired Immune Deficiency Syndrome (JAIDS) since it launched in 1988. I also serve as the editor in chief of Infectious Disease News and of Current HIV/AIDS Reports.

Impacts

Institutional policy

• During the 1980’s while developing the first outpatient clinic and inpatient ward for persons with AIDS, we reviewed UC, UCSF, and DPH policies to determine whether they were aligned with facilitating patient health.
• 2010 examined UC, UCSF, and department policies for impediments to Global Health and submitted recommendations to the Executive Vice Chancellor
• I served previously on the Academic Planning and Budget committee of the Senate. I now serve as chair of that committee.
• I also am the Senate representative on the UCSF Space Committee.
• I was the co-founder of the UCSF Research Allocation Program (RAP) and serve as the chair of the RAP executive committee. RAP annually processes pilot grant proposals from across the University resulting in several millions of dollars, most too early career stage faculty members.

Professional policies and clinical practices (including definitions for reimbursement)

• As founder & board member of IAS-USA, and co-editor of JAIDS, and editor in chief of Infectious Disease News, I have developed & refined editorial policies which ultimately shape the discussion around HIV
• Founding member and second President of the International AIDS Society
• Founding member and President of HIV Medicine Association of the Infectious Diseases Society of America
• I was on a committee for AMA that worked on defining AIDS/ARC in the early years of the epidemic, and worked to define treatment (and therefore) standards as they have continuously evolved.

Local policies

• I was on a committee for DPH that worked on regulating the bathhouses in San Francisco, and nationally – took part in similar conversations with the CDC later on.

National policies

• Served on a committee, Confronting AIDS, in 1986, which recommended funding AIDS research at a high level with funds from Congress separate and non-competing with those dedicated to other diseases.
• I chaired two later IOM committees addressing HIV issues
• Since 2010 have served on a Standing Committee advising the Social Security Administration on methods to improve the disability determination process.
• Worked with various committees over the years addressing blood donation, who can and cannot donate

International policies

Within my functions as founder and board member of IAS-USA, I have facilitated convenings of many international conferences, including the AIDS and CROI conferences, and the CFAR international conferences focusing on LMIC. These conferences set the tone, and drive forward the conversation about the global response to the epidemic. While not explicitly policy setting, they heavily influence the aspirations of funding agencies, and provide the scientific forums to discuss and amplify the science that (hopefully!) guides policy.