An Open Letter to Senator Roy Blunt: Save Medical Research By Voting No on the BCRA

Dear Senator Blunt,

I am a geneticist in St. Louis, one of your constitutents, and I urge you to vote no on the Senate’s Better Care Reconciliation Act. This act would not only make health care coverage unaffordable for 22 million Americans, as the CBO has estimated, but it would also sabotage medical progress itself through its impact on health care coverage for the millions of people with pre-existing conditions.

Here’s how this would happen. One of the main goals of biomedical scientists like myself is to use advances in genetics to make medical care more effective and less expensive. As we make progress, a growing number of young, seemingly healthy people will discover that they have a genetic risk for a serious disease. In terms of medical care, this is a good thing, because such people can often get treatment before serious symptoms develop.

However, one consequence of early testing to prevent disease is that a seemingly healthy person is suddenly labeled as someone with a pre-existing condition. Without robust insurance protections, those people are doomed to a lifetime of unaffordable health costs. Under the Senate plan, which allows states to waive the requirement that insurance companies cover a broad range of essential health benefits, people at risk for a genetic disease would face a terrible choice: Risk your affordable health coverage by getting a test that may save your life, or skip the test and hope you don’t get sick.

For example, consider a teenager who knows that a sometimes fatal genetic heart condition, such as Long QT syndrome, runs in her family. A genetic test, together with a few other medical tests, will tell her if she has the condition. If the tests are positive, she’ll begin taking a drug that will dramatically lower her risk of dying. But she would also, as someone with a diagnosis of a serious disease, be excluded from affordable health insurance for the rest of her life, if the Senate plan is enacted into law. This disincentive to seek early care harms not only those with genetic diseases, but also all of us, by making genetic medicine more difficult to develop and implement, and thereby undermining medical progress.

Senator, you have consistently been a strong supporter of medical research, and I and my Missouri colleagues are grateful for your support. We urge you to show your support for medical research again by voting no on the Better Care Reconciliation Act.

Sincerely,

Michael White, Ph.D.

Science for the People: Science and the Canadian Federal Election

sftp-square-fistonly-whitebgThis week  Science for the People is talking about politics, and the prospects for pro-science politicians, parties and voters in Canada. We’ll spend the hour with panelists Katie Gibbs, Executive Director of Evidence for Democracy, science librarian John Dupuis, journalist Mike De Souza, and former Canadian government scientist Steven Campana, for an in-depth discussion about the treatment of science by the current Canadian government, and what’s at stake for science in the upcoming federal election.

Don’t forget to support the Science for the People Patreon Campaign to keep the sciencey goodness flowing toward your ear holes.

*Josh provides research help to Science for the People and is, therefore, completely biased.

Science for the People: Fact Checking Elections

sftp-square-fistonly-whitebgThis week we’re back at the intersection of science and politics, comparing economic data to partisan talking points and polling predictions to election results. We’ll talk to Jim Stanford, economist at Unifor, about his report “Rhetoric & Reality: Evaluating Canada’s Economic Record Under the Harper Government.” And we’ll speak to pollster and consultant Donna Dasko about the science and art of polling in Canadian federal elections.

Finally, don’t forget to support the Science for the People Patreon Campaign to keep the sciencey goodness flowing toward your ear holes.

Science for The People: Science & Politics

sftpThis week Science for The People is talking about science and evidence in the political process. They talk to Dan Kahan, Professor of Law and Professor of Psychology at Yale Law School, about the Cultural Cognition Project, which studies group values and perceptions of risk in science communication. They also speak to Shane Trimmer, Executive Director of Franklin’s List, about their work to elect pro-science candidates. Biologist Katie Gibbs returns with an update on Evidence for Democracy, which advocates for the transparent use of evidence in Canadian government policy.

If reading is more your thing, check out “I’ll Trade You an Evolutionary Theory for Your Creationism” or “For Sale: 1 Vote, Price ‘Science’ or Best Offer” (posted at Culture of Science) for a Finch & Pea-esque take on some of the topics raised in this episode of Science for The People.

*Josh provides research help to Science for The People and is, therefore, a completely biased and cooperative member of the team. He does, however, insists on capitalizing the show name as he sees fit.

Science in the “national interest”

LS
Representative Lamar Smith supports legislation to make NSF ensure each grantee is pursuing science in the national interest. Image courtesy of Wikipedia.

A particularly concerning piece of legislation is making its way around the House of Representatives. This bill would require that the National Science Foundation (NSF) justify each grant it awards with respect to its contributions to protect the “national interest”. Earlier in the year, a similar bill was proposed with an extremely limited definition of what would meet “national interest” criteria. While the current bill has expanded its definition of national interest to include economic competitiveness, health and welfare, scientific literacy, partnerships between academia and industry, promotion of scientific progress and national defense, legislation like this should be getting all scientists up in arms.

Predicting which avenues of science will lead to major breakthroughs in health or energy is almost impossible. This bill would severely limit early exploratory work that has yet to prove it is in the national interest. This political interference in the operation of the scientific enterprise  is a very dangerous door to open. Decisions of what is in the national interest can very quickly become influenced by party politics and the interests of lobbyists. While it is important that NSF funds good proposals of sound science, requiring immediate association with national interest will lead to exaggerated claims by scientists and the exclusion of some of the future’s greatest breakthroughs.

Whether you are a scientist or not, reach out to your representative and let them know how this qualifier will negatively affect the scientific enterprise in the United States. If you don’t know who your representative is, you can find that information here.

%d bloggers like this: