publication date: Apr. 6, 2018
Conversation with the Cancer Letter
Manocherian: We have been unapologetic in advocating for 10% annual increases to NIH
Founder and chairman, ACT for NIH
Restoring the NIH budget is the singular mission of ACT for NIH, said Jed Manocherian, founder and chairman of the nonprofit advocacy organization.
“In the halls of Congress, and the science community, NIH Restoration is now defined as the inflationary loss to the NIH budget since 2003,” said Manocherian, a real estate investor and developer whose company, Woodbranch Investments, holds property in New York and Texas. “Thankfully, over the last three years Congress has reduced the inflationary loss to 13 percent ($4.8 billion), and we hope Congress can race across the finish line in coming years, and complete restoration.
“Since we talk with almost everyone who determines annual NIH funding levels, we have a unique understanding of what is possible, and also the potential obstacles.”
Manocherian spoke with Matthew Ong, a reporter with The Cancer Letter.
How did you get involved in medical research funding?
I serve on the Board of Visitors for MD Anderson Cancer Center and our shared mission is “making cancer history.” Through this service, I learned about the enormous promise of biomedical science to ease human suffering. I also learned about the alarming erosion of federal support for the National Institutes of Health, the most important biomedical research agency in the world.
Between 2003 and 2015, NIH lost nearly 25 percent of its purchasing power, severely impacting the search for treatments and cures. In the best of times, one-in-three NIH research proposals were funded. When we began our campaign that rate had fallen to one-in-six, its lowest level in history.
In 2014, I founded ACT for NIH: Advancing Cures Today, a nonprofit advocacy organization with the singular mission to restore federal funding for biomedical research.
In 2016, NIH received its first meaningful increase in 13 years, and now the largest in 15 years since the doubling. What role did ACT for NIH play in that conversation?
Following 12 years of inflationary erosion, the downward spiral of NIH budgets has finally ended. The top Republicans and Democrats of the Labor, Health and Human Services Appropriations Subcommittees in the Senate and House have shown extraordinary commitment to NIH and have set a path to restoring the inflationary loss of the NIH budget.
In fact, when I first met Sen. [Roy] Blunt (R-MO) in 2014, he envisioned a doubling of the NIH budget in the next 10 years, and he is not alone. There is an ever increasing number of NIH congressional champions who understand the tremendous promise of science to enhance the health and wealth of our nation. Our role is simply to support their vision. We are part of a close community of advocacy groups and research institutions that have all contributed to the bipartisan groundswell of congressional support for NIH Restoration.
Of course, how difficult could it be to support [NIH Director] Dr. Francis Collins, who led the $3.8 billion NIH-funded Human Genome Project, which may be one of the most important scientific advancements in history, and has returned more than $1 trillion to our economy?
What was your role?
When we have an opportunity to meet with NIH congressional champions and leadership, we discuss our high hopes for NIH funding levels, but mostly we seek their guidance. We also meet with representatives and senators that we hope will become NIH congressional champions. Since we talk with almost everyone who determines annual NIH funding levels, we have a unique understanding of what is possible, and also the potential obstacles.
We have met with numerous legislators since 2014, and the bipartisan support for NIH Restoration is overwhelming, in fact unanimous! What is also unanimous is that every single member we have met shares their personal story of how disease has touched their lives. Touched is too delicate a word for members that have lost parents, spouses, and children through the ravages of disease.
What are you doing that’s different?
Mary Lasker said it best, “if you think research is expensive, try disease.” Disease is on an accelerating trajectory to bankrupt our economy. Alzheimer’s care and treatment alone will cost the federal government trillions over the next 10 years. Our nation must also maintain its preeminence in science and technology that is fueling a life sciences revolution and will drive our economy in the years and decades ahead.
NIH-funded research is the lifeblood of multi-billion industries that create hundreds of thousands of jobs and it is of critical importance to our economy. Most importantly, it is priceless to the millions of patients anxiously awaiting cures.
Our singular mission is NIH Restoration. In the halls of Congress, and the science community, NIH Restoration is now defined as the inflationary loss to the NIH budget since 2003. The benefit is that there is a specific numerical target. It is a moving target because every year you need to factor the previous year’s inflation. In 2015, the NIH budget had a nearly 25 percent, ($8.6 billion) inflationary loss.
Thankfully, over the last three years Congress has reduced the inflationary loss to 13 percent ($4.8 billion), and we hope Congress can race across the finish line in coming years, and complete restoration.
We have been unapologetic in advocating for 10 percent annual increases to the NIH budget. We believe this is the appropriate level to restore NIH and also fund highly-merited research. Our sense is that Congress would like to embrace this level, but it is constrained by the necessity to work within its annual budget.
Who did you hire? And who are some of the other players you work closely with?
Former longtime appropriations committee staffer Mike Stephens was instrumental in launching our effort. Pat White, former associate director for legislative policy and analysis at NIH, is president and runs the operations, and our staff in D.C. is exceptional.
We enlisted FasterCures founder Michael Milken, Nobel Laureate Dr. David Baltimore, and Past President of MD Anderson, Dr. Ron DePinho as the first members of our Advisory Committee, which has grown to 13 members.
We also have alliances with countless advocacy organizations and research institutions such as FasterCures, Milken Institute, Friends of Cancer Research, the Parker Foundation, Ad Hoc Group, United for Medical Research, Lasker Foundation, Research!America, and the Alzheimer’s Association.
With proposals for a 22 to 27 percent cut from the White House, and no more than $1.1 billion and $2 billion in the congressional appropriations bills, how did advocates for NIH secure $3 billion for fiscal year 2018—at very short notice?
On March 16, 2017, the White House released the so-called “skinny budget,” which called for across-the-board budget cuts to nearly all agencies. However, Congress controls the budget, and both parties are committed and working together to restore NIH.
In the president’s inaugural address, he said he would like to “free the earth from the miseries of disease.” The president’s words inspired hope for patients and in the science community, and it would be wonderful if the president would join Congress in making this dream a reality.
The intention of both the House and Senate was to increase the NIH budget by $2 billion for FY18 if they could. Meaning, if there was a budget deal and not a yearlong continuing resolution, and they could agree on where to find the funds within the LHHS budget.
What most members also realized very early on is that there was a strong likelihood that we would increase the federal budget for both defense and non-defense, but it was unclear at what level. What we have been doing for almost a year is to advocate for an increase in excess of $2 billion, if the increase in the non-defense discretionary budget, and more specifically, the increase in the LHHS budget provided that opportunity.
When the final increase in non-discretionary spending and the budget allocation for LHHS were released, it was at a higher level than most had anticipated, and we had high hopes that NIH would fare well. So did Chairman Tom Cole (R-OK) who said, “Let’s just put it this way: I think the people in NIH are going to be very happy,” he said, adding for emphasis: “I just said very happy, not just happy.”
At the end of every year’s budget negotiations there is a flurry of activity, and “horse trading” which takes place among a small contingent of House and Senate chairs, ranking members and leadership. Our role throughout the year is to make the case to everyone that determines NIH funding levels to prioritize NIH, especially during the final negotiations.
What worked right?
The answer is simple, the incredibly compassionate and talented NIH congressional champions, including appropriators Sen. Roy Blunt (R-MO), Sen. Patty Murray (D-WA), Congressman Tom Cole, and Congresswoman Rosa DeLauro (D-CT), who have always understood and championed this cause, and continue to work together on a bipartisan basis for our nation and for all of humanity.
When we think about the most important people in history for the advancement of science and medical research, we think of Jonas Salk and Alexander Fleming, and we should also include living legends [NIAID Director] Tony Fauci and Francis Collins.
But let us not neglect to include the great political leaders that have unleashed thousands of brilliant young scientists to pursue their dreams of research that will lead to transformative treatments and cures for the most intractable diseases and conditions.
What’s the outlook in Washington for NIH funding over the next few years?
In one word, excellent!
Congress has elevated NIH Restoration as a bipartisan national priority, and seized this historic opportunity to reaffirm our nation’s preeminence in science and technology. This renewed Congressional investment in NIH comes at a time when scientific and technological capabilities make this the greatest time in history to find remarkable scientific advances that aid understanding, treatment, prevention, and cures for thousands of diseases and conditions.
The overall budget level is set for FY19, and appropriators are already considering NIH levels for next year. Sens. Arlen Specter and Tom Harkin and Congressman John Porter led the doubling of the NIH budget over five years, 1999-2003. Then, 12 years of inflationary erosion caused the biomedical research crisis and historically low grant success rates.
NIH Restoration started in FY16, and could potentially also be completed in five years, by FY21. This would be one of the greatest legacies of any Congress in history, and in the history of scientific advancement.I cannot think of anything that could be more impactful to improve the human condition.
In the years ahead, there will be less misery and suffering, death and sorrow, for hundreds of millions across the globe ravaged by ALL the dreaded diseases.
ACT for NIH will continue our efforts working with the science community and with Congress on a shared mission to end pain and suffering through science. There are too many patients to be patient.