A Weekly Advocacy Message from Research!America: 5 by June 5

Dear Research Advocate:

Today, June 5, is a milestone in our Ask Your Candidates! (AYC!) voter education initiative. Today is the culmination of 5 by June 5, a nationwide push to encourage voters to ask their candidates about the priority of medical progress and encourage five others to do the same. There is still time for you to join us! Click here to send a message to the candidates running for House and Senate in your district. You can customize the message to include your personal reasons for supporting medical research or you can just click send on the message we’ve provided. In this case, it doesn’t just take a village, it takes a nation. Please help us reach voters in every state and every congressional district. Should accelerating medical progress be a higher national priority? If our future leaders understand that their answer to that question is truly important to Americans, perhaps they will enter office as research champions.

Last week, we shared a fact sheet about John Hudson Dilgen, a child with a debilitating and potentially deadly disease called Epidermolysis Bullosa. Medical research is about John. It is also about Carrie, a woman living with a severe form of Multiple Sclerosis. We hope you will find this fact sheet about Carrie useful in your advocacy. When we sent John’s story to Congress, the response was truly overwhelming. Carrie’s story will no doubt have the same impact.

Two articles, one in the Washington Post on June 1, and one in today’s New York Times, offer profound examples of the power of medical research. The Post article discusses accelerated approval of a new medicine that can extend life for a subset of patients with lung cancer, and the Times article describes DNA testing that led to the rapid diagnosis and successful treatment of a little boy whose life hung in the balance. Both of these stories involve precision or personalized medicine, a hallmark of modern medical progress. 

And whether highlighted or not, both of these stories raise issues about health care costs.  Medical progress does not come cheap, and the complex public policy issues that arise from that reality should not be minimized. But it is too easy to fall into the trap of treating the cost of saving a life and the inestimable value of saving a life separately, lambasting the price and lauding the progress. The fact is that medical progress creates new chances for Americans and others throughout the world, not just in the days or months that follow the discovery, but throughout time. And it is iterative. The progress we make today is the foundation for tomorrow’s advances.  Factor in the economic returns – the businesses, the jobs, the exports – and what is the value of medical progress? The price of progress is high. The value of progress is astounding.

In previous letters, we’ve mentioned the controversy in the House surrounding the “tap” funding mechanism. The threat lurking behind this controversy is not elimination of the tap, but elimination of the Agency for Healthcare Research and Quality (AHRQ) and the other agencies and programs currently funded by the tap. Friends of AHRQ and Friends of National Center for Health Statistics (NCHS) have banded together to create Mind the Tap, a campaign that explains what’s at stake should our nation lose these pivotal agencies. It is because AHRQ and NCHS are not headline grabbing that the Mind the Tap initiative is so important and your advocacy so crucial. A life-saving new treatment is tangible; the absence of a life-threatening medical error is not. Yet they both have the same impact.  Please help us fight for AHRQ, NCHS, and the other agencies and programs funded through the tap. Follow the conversation on social media by using the hashtag #MindTheTap.

This week’s letter was authored by Ellie Dehoney, Vice President of Policy and Advocacy at Research!America.


Ellie Dehoney

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