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Mobilizing to defend biomedical research investments and scientific integrity as essential for public health, safety, and well-being

By Kenyon Farrow and Mike Frick

One of the more memorable moments of resistance to the Trump administration’s and GOP-controlled Congress’ plan to repeal the Affordable Care Act (ACA) took place on February 9, 2017 in Murfreesboro, Tennessee, at a town hall meeting organized by Republican Representative Diane Black. Jessi Bohon, one of Representative Black’s constituents, rose and gave a powerful defense of the ACA and the idea of expanding Medicaid to all by reminding Black that healthcare is about uniting the sick and the healthy to lift up everyone in their moment of need. Bohon located her comment in her Christian faith, but it just as easily could have been spoken by a human-rights activist articulating the right of everyone to the highest attainable standard of health, or by a health economist explaining why insurance schemes must include both sick and healthy to stay solvent. Bohon’s testimony was powerful because its logic transcended concerns about healthcare to raise bigger questions of what we owe to each other and what obligations our government owes to us.

The fight to save the ACA is fundamentally about preserving and expanding healthcare access. But the threat of ACA repeal is deeply entangled in debates about the role of government in biomedical research that advances healthcare and informs public health. Do people who see their government attempting to take away their access to healthcare have any reasonable expectation to benefit from government-funded research? Can people without assured healthcare be mobilized to defend medical research as being indispensable to health? Is it easy to imagine a constituent such as Jessi Bohon rising at a town hall meeting and articulating a similarly impassioned, clear-eyed defense of federal funding for research?

That the answer to these questions is likely ‘no’ reveals how advocacy for biomedical research is not well connected to broad-based social justice movements fighting for access to healthcare, housing, a clean environment, and safe working conditions. The result is a public that feels disconnected from science despite the innumerable ways good science improves their everyday life and underpins their good health. This disconnect has to end for research advocates to have any hope of defending scientific research under Trump’s presidency.

Most health research advocacy is focused at the federal level, and on federal funding in particular. One of the interesting things about the politics in Washington under the Trump administration and the GOP-controlled Congress is that advocates for research have taken solace in the feeling that biomedical research remains a rare area of bipartisan support. This theory has been put to the test by Trump’s March 16th “skinny” budget proposal, which included a $5.8 billion (20%) cut to the U.S. National Institutes of Health (NIH). Advocates will need to mobilize to hold the common ground that Democrats and Republicans have found on NIH funding in the past. But biomedical research is more than NIH funding, and research advocates must be prepared to fight for more than money. More insidious threats to the research required to end the HIV, tuberculosis (TB), and hepatitis C virus (HCV) epidemics are likely to come from Trump administration policies that weaken publicly funded research or harm the ecosystem in which good science happens. Elements of this ecosystem include civil, political, economic, social, and cultural rights, such as academic freedom, the right to seek and impart information, freedom of movement, the university tenure system, and evidence-based review and regulation of research results.

Barely two months into Trump’s presidency, all of these elements have come under attack. One of the very first actions the Trump administration took after the inauguration was to muzzle what information could come out of key agencies responsible for research and regulatory functions, including Health & Human Services (HHS), the Environmental Protection Agency, and the Department of Agriculture. Specifically, these agencies were barred from releasing any public-facing documents, communicating with other public officials, or posting on their official social media channels, among other actions. The ability to communicate freely is central to science’s public mission, and these orders, although described by some observers as standard for an incoming administration, have raised fears about whether the new administration will respect government scientists’ right to seek and impart information. For example, since the Trump administration has demonstrated its intent to undermine the Affordable Care Act (and has an HHS Secretary in place who’s also committed to its demise), any research or reports showing benefits of ACA components not favored by the administration or the GOP in Congress may be prevented from publication.

Trump has also taken aim at systems designed to support the impartial, outside review of research in the public interest. In his first address to Congress on February 28th, 2017, President Trump spoke to the need to cure rare diseases, but what he really presented was a policy agenda that will undermine the regulatory authority of the Food and Drug Administration (FDA) (see “The New War on Drugs” by Horn and Madoori in this issue of TAGline for how the FDA may suffer under Trump). During his address, Trump told the story of Megan Crowley, a 20-year-old woman who suffers from a rare disease and whose father started a biotech firm to help find a cure for her condition. The television cameras focused in on Crowley, who was in the audience and is wheelchair bound. This was a classic bait and switch technique; instead of announcing a plan to create new NIH research funds to study rare diseases, Trump used Crowley’s illness to play on the sympathies of the American public to propose policies that will weaken public accountability over medical science by stripping the FDA of its regulatory power. In the long run, such a move could erode public trust in science if drugs that haven’t met rigorous review standards harm patients.

President Trump’s initial executive order banning immigrants from an arbitrary list of seven countries with large Muslim populations took aim at another right that is central to science: freedom of movement. The order prevented several researchers from entering the U.S. to conduct work and attend conferences and other meetings. Importantly, the lawsuit that reversed the January 27th executive order, University of Washington v. President Donald J. Trump, cited both students and researchers who had been provided visas, but were not allowed entry into the country, as the issue that gave the states standing to file the lawsuit; the states successfully argued that the teaching and research missions of their public universities were harmed by the order. Undeterred by massive protests and this court decision that blocked the initial order, the Trump administration has issued a new executive order that, despite allowing current visa holders in six predominantly Muslim countries to enter or re-enter the U.S., will still affect the ability of scientists to travel to this country.

In biomedical research, clinical trials often have to occur in multiple countries, with research teams that include people from around the world. Freedom of movement is essential for enabling international collaboration in science and is a necessary ingredient for building a diverse scientific labor force. The labor rights of researchers have come under attack in other ways. There have been attempts to end the university tenure system in three states with GOP-controlled legislatures (Iowa, Missouri, and Wisconsin), with more likely to follow. If academic professors lose the protections of tenured positions, the potential for research to become even more politicized becomes much higher. They may be subject to the whims of the administration, board of directors, or even student groups, and could be fired for studying things that are unpopular or controversial. Researchers may be dis-incentivized to study rare diseases that affect small numbers of people or stigmatized groups (people of color, sex workers, drug users, LGBT, etc.).

Current threats to the academic freedom afforded by the tenure system, tightening immigration to the U.S., and the undermining of federal agencies’ ability to communicate with the public and use their authority to regulate industry and protect the public interest constitute just some of the looming threats to research under the GOP-led Congress. Activists who are concerned about the future of scientific research and its ability to help save lives and solve major global health pandemics will need to connect the fight for funding to other social justice issues, such as labor, immigration, and de-regulation of big business, to engage and mobilize the public. This will require forging new alliances, taking the fight to new arenas of action, and developing a fuller appreciation for the multiple ways that research can come under attack.

Treatment Action Group is working on this front. We are working with our national and local efforts to fight the gutting of the ACA. We are still organizing to build local strategies to end HIV and HCV as epidemics nationwide. We will be actively opposing all efforts to strip the FDA of the authority to protect the public from drugs approved with shoddy evidence. We are also very strongly advocating for continued support for HIV, TB, and HCV funding at the Centers for Disease Control and Prevention, NIH, the President’s Emergency Plan for AIDS Relief, and the U.S. Agency for International Development, and for those efforts to remain free of the politics of bigotry and ideology that are not supported by evidence.

We are doing this work firm in our belief that research policy is human rights policy, and with the understanding that policies that attack human rights also undermine research by weakening the social ecosystem in which it takes place.

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