CommonSense Blog

Path for ‘Cures’ Act Needs Patient, Physician Stories

By Gary Karr | Jul 30, 2015

Something unusual happened in Congress in early July — an overwhelming bipartisan approval for a health care bill. But despite the 344-77 vote for the 21st Century Cures Act, the increasingly vocal opposition from oft-quoted critics of pharmaceutical, biotech and device companies should be taken as a warning sign for advocates who want to see this measure become law.

The bill is designed to boost drug discovery and help get patients with rare diseases additional access to treatments and cures, mostly through various reforms of the FDA approval process as well as additional funding for the National Institutes of Health.  (The Regulatory Affairs Professional Society has done a terrific explainer for those who want to dive into the deep details.)

More than 700 groups, from the Alzheimer’s Association to the American Society for Clinical Oncology, to patient-focused rare disease groups to companies and trade associations in the pharmaceutical, biotech and devices spaces, support the Cures bill. That support has shown up in traditional spaces such as Capitol Hill visits, as well as digital campaigns on Facebook and Twitter (#Path2Cures, #Cures2015.)

As it should be, the focus of these efforts has been on the benefits for patients with challenging diseases. Even rank-and-file House members have gotten into the act, such as in this short video from Rep. Reid Ribble (R-WI).

The critics emerge

Yet now with the bill headed to the Senate, that kind of organized support may be even more important. Media-friendly experts such as Rita Redberg, editor of JAMA Internal Medicine, and cardiologist Steve Nissen of the Cleveland Clinic, are being quoted in articles criticizing the Cures bill. The New York Times’s editorial board, often taking cues from the opposition groups, criticized the legislation last week, though it stopped short of saying the entire effort should be scrapped.

The challenge now for those who want to see the bill through the Senate – in addition to trying to avoid big arguments about petty differences as the process unfolds — is to continue to emphasize the real world impact the bill would make. Patients who could benefit from expanded access to “compassionate use” of drugs should be front and center. Groups who want to see “patient experience data” folded into regulatory decisions – because different patients may have different risk tolerances – should be talking more often. And, to reflect the widespread backing for increased research funding that is in the Cures bill (nearly $9 billion extra for the National Institutes of Health over the next five years), scientific experts should be explaining over and over the need for new discovery.

Where are the physicians?

A quick review of our MDigitalLife database—a validated list of U.S. doctors with digital footprints—suggests that physicians aren’t out in droves driving the conversation. That means some of the most trusted voices on the subject of medicine haven’t been heard from yet, and doctors could yet shape this debate. Communicators trying to line up new wrinkles for the continuing campaign to pass the Cures bill should consider engaging with physicians. As our colleague Greg Matthews has written, physicians are not only active on social media, they often influence news coverage.

Conversation about the Cures bill seems likely to spike again in mid-September, when a hearing or hearings could be held in Senate committees. We’ll continue to monitor and look for new and old voices influencing the debate as action develops over the fall. Senate leaders have signaled that they will write their own version of a Cures bill, which could extend the discussion about this legislation until early 2016.

Reporters covering the legislative process will likely focus on the lobbying effort and the political clout of the industries backing the bill. This makes the real world stories – and the use of paid, earned, shared and owned content online – even more important for a successful campaign in the months ahead. The next treatment or cure could be dependent on it.

By Gary Karr and Brian Reid