Amy Farber Advances the Cause of Social Medicine as an Academic and a Patient
Jon Leavitt & Amy Farber 3/1/06

Most of the work of the faculty and staff of the Department of Social Medicine is intended to help people who are not in a position to help themselves. They may live in a place where healthcare is hard to access or hard to afford, suffer from a disease that has failed to capture the attention of governments and medical researchers, or be uninformed about health risks and prevention techniques. They lack the funds, connections, and access--never mind the medical expertise--needed to direct resources towards the best possible treatment of their conditions.

But what happens when someone with access and information, an insider in a prestigious medical community, falls into one of these at-risk groups? We are finding out: Amy Farber, Research Fellow in the Division of Medical Ethics, has been diagnosed with lymphangioleiomyomatosis, or LAM--a rare, progressive lung disease that only affects women, and is ultimately fatal. There is no treatment for the disease. Since the disease is rare, it is challenging to raise funds and promote research. As a result, Amy is learning firsthand what it is like to be one of the people for whom she advocates. Thanks to her efforts and those of her husband, Michael Nurok (an Instructor in the DSM), sufferers of LAM are experiencing the benefit of having one of their own working to build awareness and spur research from inside Harvard's medical community. This unique development promises to bring greater attention to the plight of people with LAM and other rare diseases, and to shed light on the ethical and economic issues that arise when balancing resources for medical concerns that have global implications with those that are equally pressing for smaller populations.

The original diagnosis was less than a year ago, but Amy and Michael have already done a great deal to support research that may yield treatments for LAM and related diseases. The following is Amy's summary of her efforts to fight the disease:

• I have met with legislators and lobbyists to advocate for increased funding for fatal women's diseases without treatment. Researchers believe that the sex-link in LAM is even stronger than that in breast cancer or lupus. LAM involves the same TSC1/TSC2 gene defect and the same molecular pathway as many cancers. I have worked to have LAM included in U.S. Senate appropriations language in an effort to increase NIH and DOD funding for research.
• My husband Michael and my efforts are also focused on galvanizing scientists in the Boston area and beyond. Applying social science methodologies to the basic and clinical science research setting, we have brought together researchers across disciplines, leaders in fields relevant to the disease, on a monthly basis. Participating in the monthly multi-disciplinary seminar series at Harvard Medical School are highly-regarded researchers in disciplines relevant to LAM. The seminar series provides a forum for these Boston-based scientists and visiting presenters from throughout the country, to pool and present new data, identify gaps in research, recruit young researchers to the field and brainstorm novel therapeutic approaches to the disease (http://www.bostonlamtscresearch.org/).
• Our efforts have led to another very important meeting. On December 3rd, 10 hand-selected scientists, half of them leaders in LAM research, and the other half widely recognized as leaders in developing effective treatments for disease, gathered at Harvard Medical School to define and prioritize a set of collaborative research projects, the goal being to find a treatment for LAM in the shortest possible time.
• We are now in the process of founding an organization dedicated to expediting the pace of translational research on LAM through funding high-impact research identified through small meetings we arrange throught our role as think tank/convener. Working to think inside and outside the box about accelerating the pace of LAM research, our mission is to identify and fund research projects that will most likely lead to a treatment for LAM and in doing so promote understanding and treatment of other diseases, including prostate cancer, breast cancer, melanoma and atherosclerosis.