publication date: Mar. 17, 2017

Conversation with the Cancer Letter

Ellen Sigal: This is not a grasstops issue anymore, this is really grassroots

Ellen SigalOver decades, Ellen Sigal has emerged as a Washington insider in oncology, someone who has the ability to convene key players in academia, industry and government.

Her work at Friends of Cancer Research is now largely focused on FDA. Last year, Sigal, chair and founder of Friends, worked the Beau Biden Cancer Moonshot and the 21st Century Cures Act to consolidate the FDA oncology portfolio into a single cancer center at the agency (The Cancer Letter, July 1, 2016).

Sigal said cancer groups must adopt aggressive advocacy tactics in response to Trump’s budget proposal.

Ryan Hohman 2“I think this is going back to the advocacy of what we used to see with the HIV community and the breast cancer community in the early days,” Sigal said to The Cancer Letter.

Sigal and Ryan Hohman, vice president of public affairs at Friends, spoke with Matthew Ong, a reporter with The Cancer Letter.


Matthew Ong:

What came to mind when you saw the budget proposal?

Ellen Sigal:

Dismayed, deeply disappointed. Those were words that came to my mind. That was really my immediate reaction.



Does this proposal have political legs in Congress?


I think, traditionally, the president’s budget sets a tone but does not always translate into policy.

Everyone knows there is bipartisan support for the NIH and the FDA, but this does set a deeper tone and deeper discord that what we’ve had before, and it is very concerning, and I think the biggest issue for me is the impact on patients and on public health and the devastation this will cause.

We’re in a very promising area where we just came off the elation of the 21st Century Cures and bipartisan efforts to really focus on research and promising immunotherapies, the moonshot, personalized medicine, the BRAIN Initiative, and all these things—and after two-and-a-half years of hard work, the Cures Act was an enormous victory.

And then, all of a sudden, to see this? It’s just deflating.



What would the impact be on patients and public health if these drastic cuts were made?


This is for patients who are living and who need help every single day. The ramification of this for patients, for people who will be deeply impacted, are really draconian, because right now, the science is breathtaking, but we have a huge amount of work to do. We’re not finished.

We’re just starting to understand precision medicine and immunotherapy and all these clinical trials that are going to make a difference, and we finally, after years and years of low budgets, finally got to some equilibrium and to some incentive to really increase the funding.

Now, all of a sudden, this just sends a very ominous message. It shows you something about values, values for patients, and values for people who are suffering.

And, the impact will be devastating, because it will cost more money. Research, we know, saves money ultimately. The great advocate Mary Lasker once said, “If you think research is expensive, try disease.”



Why did the White House propose doubling of the user fees? I’m not sure I quite understand the justification for the move.

Ryan Hohman:

I don’t think anyone quite understands this.

The White House budget references it as $2 billion in 2018 and $1 billion in 2017. User fees, in the latest agreement, are $1.9 billion, so arguing to reopen the user fee agreement, for $100 million—is the president saying then that he will reduce FDA’s budget by $100 million and make up for it with that extra user fee money?

You almost can’t react to it; it’s so unclear. It shows a baseline misunderstanding—or not understanding—of how the FDA functions.


And also, at the moment, the White House proposal didn’t touch the FDA budget, but we don’t know what that means.

You know, after the elation of Cures, after the victory, after we all worked together—all diseases—and worked for years, bipartisan effort by everyone, and to get this right on the heels of such a victory for health and patients and science, it makes no sense. It’s just draconian and hard to understand or to grasp.

I think the community is going to have to get out there—and I mean community centers and the academic centers—this is not a grasstops issue anymore, this is really grassroots.

Congress needs to understand what this really means in their communities.



What are your next steps?


We want clarity on the FDA and understanding what the White House means, because the budget proposal is going to be interpreted in different ways.

What President Trump did with NIH is tone-deaf politically, because the impact it has at the congressional level, at the Senate level—a cut of almost 20 percent—is going to impact all districts.

We’ll obviously work with ACS, ASCO, AACR, but I think what their power is going to be not only—like Ellen said, she’s exactly right, the grassroots issue—get on the Internet, get on Twitter, get people to call the Hill. It’s also going to be the cancer center directors saying to their members of Congress, “What the hell, do you understand what this is going to do to the economy of our local district?”

Fifty days in, with health care on shaky ground, and [HHS] Secretary Tom Price’s being tested so early on, these numbers add uncertainty for our community.


I just think there’s nobody there that has an appreciation, candidly, at the White House, who is passionate about these issues, or understands biomedical research.

We’ve seen budget cuts and we’ve seen decreases and we’ve seen people that feel that NIH or FDA is not efficient, but we’ve never seen anything like this.

This is wanton disregard for medicine and public health.

But, again, I want to stress, the impact of this won’t only be felt in academic institutions. Patients will feel the impact and that’s whom I care about.



Any closing remarks?


This is a different world, different administration. We have to use better tactics. This is not marching 20 physicians or 20 researchers to the Hill. Those are not the tactics.

I think this is going back to the advocacy of what we used to see with the HIV community and the breast cancer community in the early days.

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