The Finch and Pea

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.