Yeonwoo Lebovitz: On science policy and science advocacy: Interview with Dr. Heidi Marchand

The PhD/Postdoc blog series features scientists at different stages of career development as they explore and plan for their next steps. Over the course of six months, Yeonwoo Lebovitz, Anthony Franchni, Megan Duffy, and Celia Fernandez will give monthly updates on their progress. Check back every Wednesday for new posts.

Current position: PhD student in Translational Biology, Medicine, and Health
Program start date: August 2014
Institution: Virginia Tech

As I interviewed scientists working in areas related to science policy, a persistent question that kept cropping up in my mind was, “How is this different from science advocacy?” Indeed, I often see the term “advocacy” in close proximity to “science policy,” as science policy frequently encompasses the advocacy of scientific evidence. While I could appreciate that there was a clear difference in semantics between the two terms, I personally found that the line blurred upon closer examination.

I posed this question to both Dr. Libby Barksdale, Science Policy Analyst at FASEB, and Dr. Elizabeth Stulberg, Agricultural Science Fellow at USDA, and was impressed when neither scientist hesitated in answering. Dr. Barksdale delineated science policy from science advocacy based on the level of emphasis placed on “means” as opposed to the “end.” That is, science policy is more focused on the means of reaching a particular end result in mind, whereas science advocacy is more focused on the end result that may be achieved through multiple means (e.g., additional funding, position statement). For Dr. Barksdale, whose work falls under the science policy end of the spectrum, the “means” include analyzing federal guidance proposals for the purpose of informing policies to be less onerous to scientists.

Dr. Stulberg’s response reflected these themes as well:

Science policy is the combination of straight-up scientific research combined with the reality of politics and economics. For example, some might argue that it would be terrific for the environment if we completely stopped burning fossil fuels everywhere, stopped raising livestock, stopped farming, etc. However, others would counter that the economy would go into a tailspin and everyone would starve. Science policy supports the evidence-based decision-making that factors in all of these elements. Science advocacy also uses scientific evidence to support a position, but it does not necessarily make an effort to factor in the realities of politics and economics. [USDA Office of Chief Scientist] is neither a policy-making nor an advocacy shop. We don’t focus on the politics—our objective is to help make sure that policy decisions made by people who do have to factor in all of these things have the best available scientific information at their fingertips.

My takeaway here was that the line between science policy and science advocacy is not that blurry after all. Confusion is nevertheless understandable when there is considerable overlap between the two; that is, when public policy think tanks occasionally advocate for specific policies based on their research findings or when advocacy organizations submit public comments to inform policymaking decisions. In particular, the intersection between science policy and advocacy made me think of disease-specific nonprofit organizations, such as Cystic Fibrosis Foundation and ALS Association, that have demonstrated great fluency in “policy” to promote their causes.

To learn more about how patient advocacy groups merge policy and advocacy, I reached out to a friend and former work colleague, Heidi Marchand, PharmD. She is the Assistant Commissioner in FDA’s Office of Health and Constituent Affairs (OHCA), which means that she and her staff serve as liaisons between FDA and its constituents, including patient advocacy groups, health professionals, industry, and consumers.

Dr. Marchand described three activities of policy engagement by patient advocacy groups—two relate to drug discovery and development and the third to reimbursement in which FDA is not involved. These are: 1) to highlight certain areas of research need; 2) to involve patients more directly in the therapeutic development process; and 3) to endorse reimbursement policies that reduce the financial and/or regulatory burden of specific therapeutics, devices, or procedures. The means of reaching these goals vary widely and could involve advocating a particular type of drug development process so that evidence of effectiveness is included in the label, which may then lead to consideration for third-party reimbursement. Other actions may include demanding legislative action on a research funding bill, or even recommending endpoints for a clinical trial that would be relevant for the targeted patient population.

Dr. Marchand specifically mentioned rare disease patient advocacy organizations, such as Global Genes and Every Life Foundation, as demonstrating sophisticated initiatives to raise awareness of rare disorders to policymakers and to educate patients and advocates on policy. In terms of advocacy efforts, Dr. Marchand stated that rare disease groups outshine some chronic disease groups with their organizational power. For example, as several rare diseases can be traced to single gene mutations, patient advocacy groups were able to rapidly mobilize efforts following the announcement of the Precision Medicine Initiative to bolster resources for continued rare diseases research, improved clinical trial designs, and leverage orphan drug development provisions.

The successful engagement of patient advocacy groups in science policy and therapeutics development can translate to better patient recruitment and enrollment for clinical trials, resource efficiencies, and faster regulatory development programs for new therapeutics. Many companies in the biopharmaceutical industry now maintain special offices/contacts for patient advocacy and outreach, which is a critical and almost expected interaction that Dr. Marchand sees as an ongoing part of overall treatment and diagnosis development.

Fellow NIH-BEST blogger, Megan Duffy, previously posted an interview with a scientist at Parkinson’s Disease Foundation. I, too, have noticed many PhDs working in such organizations, especially as research program officers to ensure scientific merit of research proposals. Now I would argue that biomedical PhDs fit in public policy and advocacy offices as well, as scientists are natural advocates for their area of study and the people affected by their research. In the end, it’s reassuring to know that biomedical PhDs, who are passionate about science policy, can find fulfilling work in advocacy organizations and private industry in addition to the public sector.

Special thanks to Dr. Marchand for the interview and for sharing her unique observations as a liaison between policy and advocacy.

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